Spectrum Life Magazine Summer 2023 Issue from Autism Empowerment

L ightly-weighted for an extra sense of security and stability, the TwiddleNathan helps youngsters find that “just-right zone” for maintaining attention and appropriate behavior for tasks and activities. Crafted from cozy, durable fabrics and plush fleece, the Nathan features high-grade fidgets attached with ribbon loops that snap, to enable switching around and personalizing fidgets for variety’s sake, training purposes, or the child’s own preferences.

Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.

ADVOCATES AS PARENTS – PARENTS AS ADVOCATES

FEATURED SECTIONS RECREATION

4

7 15 18 26 20

From the Publisher

7 Years of Spectrum Life - You are appreciated!

Connections for our Community Outreach updates from AE Program Director John Krejcha.

ADVOCACy

Advocates as Parents - Parents as Advocates Supporting children in their educational journey.

Navigating with Niko A case for paid parent support workers.

LIFESPAN

Dating Tips for Autistic Teens and Young Adults

Becoming more comfortable and confident.

#AskingAutistics with Lyric Rivera

Do you rhythmically stim? Do you stim with music?

A Day in the Life of Karen Krejcha

Autistic advocate, devoted to family, former professional bowler, and person of faith.

Ask Spectrum Life / Navigating with Niko Niko Boskovic answers questions about OCD and inclusive employment.

Upcoming Autism Empowerment Activities Connection. Compassion. Community.

35

7 31 49

5 12 40 46 54 29

Joel Suzuki’s Swan Song Brian Tashima’s epic sci-fi/fantasy book series about an autistic hero in a land of music and magic comes to a thrilling conclusion... or does it?

EDUCATION

College Choices for Students on the Autism Spectrum

Finding the right place for you.

Creating More Equitable Spaces: Part Two Creating clear learning targets for each student to succeed.

HEALTH

44

+ WELLNESS

Building Confidence In and Outside of the Gym

You CAN do difficult things!

#AskingAutistics with Lyric Rivera

The myth that “Real Autistics Can’t Camouflage”.

THERAPy

Do You Mask?

Exploring the many faces of masking.

Autism and a Changing Sensory System

As needs change over time, Be Kind.

Welcome to the Summer 2023 edition of Spectrum Life Magazine!

Hello friends! This is our first issue back since Fall 2022. My husband John and I are currently experiencing a challenging season in our lives. Serious family health issues that began last fall carried into 2023 and required us to take time off from Autism Empowerment.

We’re now back and ecstatic to be serving you again! Thanks for your kindness and grace! This issue features a new column, Connections for our Community (page 5), and a new columnist, Niko Boskovic, who answers questions about OCD and inclusive employment in our Ask Spectrum Life/Navigating with Niko feature (page 26).

Our cover story highlights educational advocacy tips: Advocates as Parents and Parents as Advocates (page 7). Clear learning targets are discussed in Creating More Equitable Spaces (page 40). A Case for Paid Parent Support Workers (page 12) should be open and shut.

Lyric Rivera is back #AskingAutistics about Rhythmic Stimming (page 18) and dispelling the myth that “Real Autistics Can’t Camouflage” (page 46). Dr. Anson Service explores the many faces of masking in Do You Mask? (page 49) and Judy Endow reminds us sensory needs change over time in Autism and a Changing Sensory System (page 54).

As we head into summer, many teens and young adults are seeking connections. Dating Tips for Autistic Teens and Young Adults (page 15) and Building Confidence In and Outside of the Gym (page 44) provide support. College Choices for Students on the Autism Spectrum (page 35) provides options, and Joel Suzuki’s Swan Song (page 31) provides an epic read.

This issue celebrates our 7th anniversary of Spectrum Life and the 12th anniversary of Autism Empowerment. If you’ve ever been curious about what nonprofit life looks like behind the scenes (and what pro sport I played in the ‘90s), see A Day in the Life of Karen Krejcha (page 20).

Thanks for reading and being an Ambassador for Acceptance of All Abilities. Wherever you identify in your autism or autistic journey, we’re here to meet you along the way with acceptance and grace for the road ahead!

SpectrumLife SpectrumLife

SUMMER 2023 | VOLUME 13, ISSUE 1

SPECTRUM LIFE MAGAZINE TM

A program of Autism Empowerment TM

Karen Krejcha, Autism Empowerment, Publisher

Dave Born, Graphic Designer

Editorial Advisory Board:

Aaron Blackwelder

Amy Donaldson, Ph.D, CCC-SLP

Laurie Drapela, Ph.D

John Krejcha

Tara O’Gorman, MSW

Anson Service, Psy.D, LMHC

Brian Tashima

Mailing address: Autism Empowerment

P. O. Box 871676

Vancouver, WA 98687 (360) 852-8369

www.AutismEmpowerment.org

spectrumlife@autismempowerment.org

Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within Autism and Neurodiverse communities.

Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment.

© 2023 All rights reserved.

ON OUR COVER

Karen Krejcha

Executive Director & Co-Founder:

Editor: Spectrum Life Magazine™

Autism Empowerment™

Susana Ramirez and her son Kevin Burns are an advocacy and selfdetermination success story! Learn tips from her and other moms in Advocates as ParentsParents as Advocates. (page 7)

Photo courtesy of Jim Wilson

Connections for our Community

Hello there, my name is John Krejcha and I serve as Program Director for Autism Empowerment. In order to better communicate with the people that we serve, we have started this new quarterly update to share behind-the-scenes updates.

We are excited to be back with this issue of Spectrum Life Magazine. Over the past seven months, my wife Karen and I have taken some family leave to take care of several challenges with extended family issues. I know many of you have reached out to us personally. It is wonderful to see how our community has shown their love for us during these challenging times. Thank you for all of your grace!

We hope you enjoy all the great content in this issue. But don’t stop here! Please check our www.SpectrumLife.org website where you will find all past issues and blog posts for Spectrum Life and our sister publication Zoom Autism Magazine. You’ll also find regular columns from Lyric Rivera: #AskingAutistics and Niko Boskovic: Navigating with Niko

Autism Empowerment celebrated our 12th Anniversary of serving youth, adults and families within autistic and neurodiverse communities on June 3rd, 2023. As an autistic and neurodivergent-led nonprofit organization, we are committed to providing our community with resources and information to enrich, inspire, and empower, while at the same time promoting a culture of Autism Acceptance!

For those seeking a deeper connection, Autism Empowerment board member, parent and all-around great human Shasti McLaughlin hosts a monthly AWEtism We Embrace Support Group gathering on the third Tuesday of most months via Zoom. AWE is a meeting for autistic and non-autistic adults to learn from one another. Parents, family, and friends are welcome.

We are currently in the process of reimagining the way that we provide the people we serve with meaningful content, support, and resources. We have big aspirations for easyto-navigate powerful websites, an amazing resource library, an up-to-date resource directory, and fresh regular content through blogging, vlogging, and podcasting.

Alas, these all take big resources (time, skills and dollars) and we have learned, particularly in the past year, that although our intentions are awesome, our implementation is a work in progress. Thanks for your patience as we partner with you to navigate this together.

We are excited to let you know we will be re-launching our Autism Empowerment Podcast this coming fall. We are currently working on topics and if you have something that you would like to address, please feel free to reach out to me with your suggestions at spectrumlife@autismempowerment.org.

During the next few months, you may also see us more around the Portland metro area. On July 9th, 2023 we will be at the Vancouver Autism Moms annual picnic, and on September 7th, we will be at Pioneer Square at The Standard Volunteer Expo seeking skilled volunteers.

Please feel free to reach out to me with any questions about our programs and remember:

Johnny “Konnections” Krejcha is co-founder of Autism Empowerment and serves as Program Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is co-host of the Autism Empowerment Podcast

John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family who is not on the autism spectrum, he is dyslexic and identifies as a neurodivergent and loving ally.

Photo courtesy of Marlou Julian

Advocates as ParentsParents as Advocates Supporting Children in their Educational Journey

By Diane Wiscarson, Susana Ramirez, Sarah McPartland, Marlou Julian, and Amy Dorlon

Diane Wiscarson has been a long-time advocate for children experiencing learning differences, at first as a parent. After graduating from law school, Diane’s experience as a parent translated into a lifelong passion of advocacy for other children, and the creation of Wiscarson Law.

experiences that assisted them in becoming advocates for other children, even though they have children with different disabilities, previous professions, and life experiences. They quickly realized that all of the experiences were quite similar.

Over the years, as the law firm has grown, several people with their own experiences have joined the team to help support even more families. This month, Diane asked some of the parents to share their knowledge and tips for readers to learn from others who carry the role as advocates for their own children and are also part of the team at Wiscarson Law.

As parents, Susana, Sarah, Marlou, and Amy began working on this article, and quickly realized that their parent “hat” was immediately on top of their advocate’s role when writing. Each tapped into their personal

Each experienced similar barriers and obstacles to assist their children in acquiring a meaningful education. How can that be? It is because regardless of the disability, the Individualized Education Plan (IEP) process is the same.

It starts with the law, which requires school districts to identify children with disabilities who need special education services. What is important to note is that the Individualized Family Service Plan (IFSP), the IEP, or the 504 Plan will progress with each child as their social, emotional, behavioral, and academic education develops over time.

Continued on page 8

Advocates as Parents—Parents as Advocates, continued from page 7

Special education is not a “location” or a “service” but rather a collection of information, instruction, accommodations, and other supports to assist each child in attaining an appropriate education.

Meet the Parents

Marlou: I am the mom of three wonderful children, one of which is quadriplegic, non-verbal, has cerebral palsy, requires full assistance from an able adult, feeding pump dependency, and has a tracheostomy where breathing needs to be monitored. With all of these different needs, I also support him in acquiring an education. When advocating for Nathan, I had to put my own needs and wants aside. I had to advocate for the wants and needs of Nathan. Parents know their child best.

We as parents know their personality, what works, what doesn’t work, what they enjoy, and the challenges they have. As parents, we add our hopes, dreams, and wishes for Nathan. My husband and I created a two-page Person Centered Plan or an “About Me”, which has followed Nathan since kindergarten. This “About Me” consists of his strengths, hopes, dreams, expectations, what works, and what doesn’t. We’ve also created a one-page document, “Nathan’s Communication with Body Language: What I do, What it means, and How to respond.”

The one thing I had to learn, and am still learning, is to take the emotion out when advocating for Nathan. I had to look at Nathan as a client. That was, and still is, the most difficult thing to do. Parents who have a child with a disability wear many hats and it is EXHAUSTING!

First and foremost, we are parents who want everything for our child. We also learn to be physical therapists, occupational therapists, special education teachers, speech and language therapists, nurses, dieticians, communication specialists, technology experts, personal assistants, and more in supporting our son and the school in understanding our child so he can access his education. But every minute spent for Nathan is a valuable opportunity for me as a mom.

Susana: I feel very fortunate for the gift of three sons. Each one of them has shaped my lens of the world and has made me a better person that I could ever be without them. As a former ballerina from Mexico City, I see advocacy as an intricate dance. The discipline I learned in ballet prepared the stage for what was to come when I realized one of my sons had a developmental disability.

The barriers in front of me appeared to be insurmountable at the time. English being my second language, people making assumptions about me based on my ethnicity and accent, and having to learn another language besides conversational English; special education legal terminology is a second language!

Luckily, I had studied law in Mexico City and always had a sense of justice. But what propelled me to learn everything I could was the love of my child and all the possibilities I saw in him, regardless of what the special education system (and others) called “very significant deficits”.

Fast forward a few decades and today my son lives in a home of his own – his forever home – with Supported Living services, which was my vision and my dream. I purchased this home for him, so he would never be kicked out of a group home and could live independently from me, as I know he wanted.

He has a job at the county courthouse with the support of a job coach. He is a taxpayer, as I remember parent advocates say, “my child will be a taxpayer” and today I believe that with the right support, everyone, no matter the disability, can do something and have a self-determined life like all of us.

Today my son is so happy because he knows he is a valued and contributing member of his community. And he tells me: “You have your house and I have mine, you have your job and I have mine, you have your life and I have mine.” That is all that I worked for since he was a baby. Have a vision, a plan, work the plan, and it can be done.

Continued on next page

Photo courtesy of Marlou Julian

Photo courtesy of Jim Wilson

Sarah: As a parent, and as an educator, I felt I had a good perspective on how to support children in the educational system. Now that I have had eight years of experience of supporting my children with different abilities within the educational system, experiencing anxiety and feelings of helplessness, I realized I wasn’t as prepared as I thought.

I remember going to a parent’s night when my child was six, and someone from the district read a poem “Welcome to Holland” which talked about a mom’s perspective of what it is like to have a child with disabilities. I thought to myself, “Wow, we are going to be okay as this person from the district understands.” I quickly learned that was not the case as every educator is human, being human comes with biases, and biases create lack of understanding.

I quickly learned that I was as important as the educators attending the IEP team meetings. After all, I was the one who had attended thousands of hours of therapy, implemented the strategies, assisted in supporting positive coping strategies, co-regulated to model positive strategies, and read all the books to learn about the disability and its impact on the brain and my child. I learned I am one voice of a team that also needs to be heard.

I also realized one must give themselves grace, compassion, understanding, and know we are in this together. The child is depending on the adults to work together in navigating the education system, which is often opposite of how their brain sees the world.

Every child needs places to belong, opportunities for peer connections, all while acquiring their education leading them to successful work opportunities when they are adults. The IEP is a major part of assisting the child in reaching this end goal during their journey within the public educational system.

Amy: I have a wonderful, high-energy child! Although I could share multiple perspectives, I want to share about co-parenting at an IEP meeting.

One suggestion – clarify which parent has the educational and medical decision-making rights in the divorce decree. Typically, the decision-making rights are not stated in joint custody cases. Chances are, if you are going through a divorce, there are differences in parenting styles and educational decisions.

The parent with decision-making authority in the decree has the final say if the parents disagree on something IEP related. One example is who would sign a consent form for an evaluation.

Divorce impacts all children, and for children who struggle with transitions and emotional regulation, the impact is even more. For example, my child had some behaviors, which increased during the divorce process and are still continuing. This has required new approaches through mediation and therapies. It is important to communicate with the school team about these changes in the family structure and also to collect information from the school about how new approaches are helping (or not) at school.

Divorce is a major transition that can also impact a child’s ability to access their education. The IEP may need to be amended or updated with different services and/or accommodations. Perhaps a behavior plan, health management plan, or a safety plan will need to be implemented.

A trusted adult at school for the child is SO important. I sometimes hear that parents are hesitant to share what they are going through because they don’t want the school to know about the home struggles. However, the school has people that are trained to help your child but cannot if they do not know what is going on. Some staff members have gone through a divorce as well – having that shared experience is similar to having the shared experience of parenting a child with a disability.

Continued on page 10

IEP meetings are often emotional, but having to see your ex-spouse at a meeting can make the meeting even more emotional. I recommend bringing an advocate (or even just a friend) to the first few meetings after the divorce just so you have someone else who can help take notes.

Remember to keep the focus solely on your child. Going through divorce helped me understand other families that are going through the same thing and how it can impact any child’s education; especially those impacted by disabilities.

General Tips from Parents / Advocates

These general tips and strategies are a compilation from all of us, for all IEP meetings, and then a few specifics for various age levels of schooling.

• Generally, if your child has an IFSP, your child can transition to an IEP. The IEP team is required to meet prior to the expiration of the IFSP. This happens when a child transitions from early intervention services/early childhood special education to school-age services.

• Parents are essential members of the IEP team as they know their child the best and are the only expert on the child (aside from the child themselves) who attends the IEP meeting.

• Evaluations guide IEP goals and can impact placement of the child at all grade levels.

• Evaluations must occur every three years, but you can ask for an evaluation at any time, and especially ask when children are struggling, or changing programs, schools, or districts.

• If your child has disability-related behaviors, a Functional Behavior Assessment (FBA) can help develop a behavior support plan to assist your child in learning coping strategies to navigate school so they can access their learning all day long, every day.

• Put all school documentation (IEP, Behavior Intervention Plan (BIP), FBA, Report Cards, Progress Reports, important emails) in a binder that is organized and easily accessible.

• Monitor progress on IEP goals to ensure the goals are changing and growing with your child.

• The Procedural Safeguards are your best friend. Read them from beginning to end, end to beginning, up and down, in and out. Procedural Safeguards describe what districts must do, and your remedies when your child’s needs are not being addressed appropriately.

• When writing goals for an IEP, incorporate the strengths of your child within the goals. This is important because the IEP is not to be used to change the child’s disability but rather to support the child during the educational process.

• Data collected should have a direct correlation to the IEP goals.

• The IEP team should always presume competence and growth for a child, not just low expectations.

• When you hear legal advice from someone who is not an attorney, make sure you verify the information before believing or acting upon that advice.

Elementary School IEP Tips:

• Always start with the Least Restrictive Environment (LRE) possible in kindergarten.

• Start building a collaborative working partnership with the school team – teachers, administrators, and other building staff.

• Monitor progress on IEP goals and objectives to ensure IEP goals and objectives are changing and growing with your child.

Middle School IEP Tips:

• Review accommodations to ensure they are still meeting the needs of your middle schooler, as many procedures are different in middle school than in elementary school. Ask specific questions about who is responsible for making sure accommodations are implemented by each and every one of your child’s teachers.

• Organizational skills are often overlooked and undersupported, leading to lack of success within assignment completion, time management, and organization. Frequently, these lagging skills already exist at elementary school, but become more obvious and hindering in middle school due to more transitions and many more adults with whom a student has to interact.

High School / Secondary Transition IEP Tips:

• There are different types of diplomas; and this also varies from state to state, so make sure you understand the differences and specifically document diploma choices for your child within the IEP.

• At age 16, secondary transition planning and goals start regardless of diploma type. The transition section of the IEP is often overlooked or treated skimpily but is a required and important part of the IEP.

In a lot of ways, each of our parents/advocates have had different journeys with their children. Fundamentally though, their journeys have all been the same – each involve supporting children to gain an education at their own pace and abilities.

Through sharing a snippet of our journeys, our hope is parents will walk away from this article knowing they are not alone.

Continued on next page

Advocates as Parents—Parents as Advocates, continued from page 10

About the authors:

Diane’s passion for special education law stems from her own frustrating experience with the IEP process. Diane is the parent of three boys, one of whom required an IEP through all of his years in public school. While attending law school, Diane was also trying to figure out how to get her son’s educational needs met, with little success. After learning from a law professor that there were laws and legally defined educational rights, Diane knew she would spend her legal career helping families with disability-related needs. www.WiscarsonLaw.com

Originally from the island of Oahu-Hawaii, Marlou moved to Oregon with her husband and three boys in 2013. She studied at the University of Hawaii-West Oahu earning her B.A. in Business. She also earned her AAS Degree in Paralegal from Portland Community College, graduating with highest honors, and was inducted in the LEX Honor Society for Paralegals. Marlou’s interest in special education law came from her experiences advocating for her son who receives special education services in the public school system.

Susana is first, mother to her three sons, one a young man with autism. Originally from Mexico City, she immigrated to the San Francisco Bay Area to join a ballet troupe. After years of being a ballerina, her life changed direction when her son Kevin was born 36 years ago — becoming his long-life advocate, even though she didn’t know it at that time. Since then, Susana has dedicated her career as a community organizer and advocate for the fundamental right to an education for children with disabilities. Susana worked at Disability Rights Oregon as a Special Education Advocate for the last eighteen years, prior to joining Wiscarson Law in January 2020 to continue providing guidance to families in the role of advocate.

Sarah is a former elementary school teacher and reading specialist by trade. She is also a parent of two children who have needed advocacy support since they entered kindergarten. Her advocacy work has focused on generating collaborative conversations around a variety of disabilities (Autism, anxiety, dysgraphia, ADHD, depression, trauma in a school setting) to develop a working IEP to support the child in succeeding within a system.

Amy is originally from New Mexico and has lived in Oregon for several years. She has one child, who is her “North Star.” Amy’s passion for helping families comes from being a parent of a child impacted by disability which can be rewarding while at the same time, complex and challenging. Amy believes in and advocates for inclusion with proper supports within the educational system. Her goal is to educate families and districts on the many aspects of disability. Amy plans on continuing her education so that she can continue to advocate for families in a greater capacity.

Diane Wiscarson

Marlou Julian

Sarah McPartland

Amy Zajac

Susana Ramirez

Photos courtesy of Wendy Mayo

Navigating withNik o

By Niko Boskovic

I recently heard a news story about the situation facing many families that have someone who relies on someone else for support whether that’s at work, at school, in the community, or at home.

Being someone who relies on others in all these places, it is really interesting to get another perspective on this work. I know issues can always arise with individual workers, but the biggest challenge facing families right now is having no pool of available support workers in the first place. I’m sure a lot of people are also looking for providers who can support their child’s unique needs, especially in the autism community, and that makes the pool of available people even smaller.

In my opinion, nothing would make more sense than if parents could be paid to be their child’s care provider. I speak from experience: when I was little, my parents both worked. They had to because the therapy I was getting at home wasn’t covered by insurance, and I was getting a LOT of therapy!

But somehow, my mom managed to find a part-time job that she could do from home. It meant that in her spare time, she could oversee the people they had hired to do Applied Behavior Analysis (ABA) with me. This overlapped with her work time, and when you consider that my sister had just been born, it made my mom incredibly stressed out. And frankly, if we consider that she was also new to the world of disability and had a huge learning curve, she was having a lot of trouble managing it all.

Fast forward to my 18th birthday, and suddenly I was an adult. I transitioned to adult Developmental Disability (DD) services and became a consumer of the adult system. I’m not sure why there’s a distinction, because in all ways, my days looked the same.

The only thing that changed was that now my mom was able to be paid to spend time with me. This meant that she could free up her week a little bit to be free from the work emails, and we got to spend time doing fun things. Her demeanor changed in that she seemed way less stressed out, and we enjoyed each other’s company more. In all ways, it has become so much calmer in our household.

Perhaps there are critics who don’t agree with the idea of paying parents to support their children, and that this is somehow the beginning of a new social entitlement program. Yet the state of Oregon made this a reality for some families of young disabled children, so at some point during the COVID pandemic, it realized some families were really struggling and made this employment program temporarily available.

In any case, it doesn’t seem like families have any choice but to do what they can to make ends meet while caring for someone with high support needs. Paying them a fair wage for supporting their

A Case for Paid Parent Support Workers

family members is good for business because it creates a pool of potential support workers who might eventually move into the professional healthcare field, special education, and policy work. Nursing homes are also potential sites for such folks.

Having paid parent support workers could also be a great way to bring in disability rights and advocacy training which could include all sorts of opportunities to change the way disability is incorporated into daily life; speakers who are disabled to lead workshops; and the consideration of ableism and how it impacts families depending on their life experiences.

There are many varieties of disability, but caregiving will always be one-on-one. And as people age, their level of support may become more specialized, so there will always be a need for care professionals.

By that point, it’s an added bonus to be able to pull from a pool of people who have been brought up in believing that disability is a natural by-product of being human. I do believe that we could have a huge impact on the way we live as disabled Oregonians by paying parents to be support workers for their young children.

Editor’s note: Unfortunately most states do not currently have a paid family caregiver policy for parents of disabled children under 18 but advocates and lawmakers in many states including Oregon are working on making a change. To learn more about this topic, see:

https://bit.ly/paidparentcaregivers

This blog is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine by Niko Boskovic called Navigating with Niko. To read more of Niko’s writings, visit www.spectrumlife.org/navigatingwithniko.

Niko Boskovic is a 21-year-old autistic adult from North Portland, Oregon who uses a letterboard to communicate, advocate and share his passions and ideas. He graduated in 2019 with an Oregon high school diploma and currently takes classes at Portland Community College in writing and history. Niko is passionate about poetry, nature, family, and disability justice and is very pleased to be able to share his thoughts and experiences with youth, adults and families in autism communities through his monthly blog at Autism Empowerment and Spectrum Life, Navigating with Niko.

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Christopher Robin

Dating Tips for Autistic Teens and Young Adults

Becoming more Comfortable and Confident

By Mara McLoughlin, IRL Social Skills

Countless articles advise non-autistic individuals on how to date an autistic person. However, few exist that help autistic and neurodivergent people navigate dating an allistic (or non-autistic) person. This article on dating tips for autistic teens and adults was written by the team of #actuallyautistic educators and coaches at IRL Social Skills.

NOTE: This article was written for neurodivergent teens, young adults, and adults who are just starting to date or have difficulty dating. We recommend parents review these tips with their autistic, neurodivergent, or socially anxious children to help support a safe and positive dating experience.

1.

Asking someone on a date.

Asking someone out on a date can be the most challenging part of dating for socially struggling individuals — regardless of age. It leaves you open to rejection, and the person you ask could feel embarrassed. Some basic social skill practices will help you approach this part of dating more confidently.

First, set the scene: Choose the right place and time to ask someone out. Pick a quiet place where no one else can hear you. This will give you both some privacy and can go a long way to establishing a level of comfort in your communication.

Start the conversation by trading information about your shared interests, e.g., music, dogs, or anime. Then, you can ask your would-be date if they would join you for an activity based on your common interest. “Would you like to see a show/walk our dogs/go to the anime show with me?” is a closed-ended question that will likely result in a yes, no, or maybe answer.

Assuming they say yes, you can ask follow-up questions to nail down the particulars of the date. You can ask those questions right then and there or plan to get in touch by phone or text to figure out the details of your date.

2.

Choosing the right place.

Your first meeting with this person should be simple and public, like grabbing a cup of coffee at a cafe or getting some ice cream and going for a walk. Keep it short and sweet when you’re first getting to know someone. This allows you to figure out if this is the kind of person with whom you want to spend more time. Going to a public place for your initial meeting or first few dates is a good practice to adopt for your own personal safety. This applies whether you’re the person who’s being asked out or the one doing the asking.

Picking the right place is also vital for individuals with sensory processing difficulties. If you get overwhelmed by too much noise, let your date know you prefer a quiet place to become acquainted. On the other hand, if you like highly energetic environments, see if your date is comfortable going to an arcade, a busy cafe, or a concert — but save these more stimulating activities for follow-up dates.

3. Connecting over common interests.

Common interests are a solid foundation for any type of friendship — romantic or not. People who share a neurotype tend to gravitate toward each other, so you may want to connect over shared interests. For example, you may both love to dance, see live music, or watch movies.

“Parents: It’s important not to make assumptions about whether your child is dating, or whom they’re dating, or how it’s going. If your child struggles with social interactions with others, dating is bound to be more scary and difficult for them. Talk to your child openly about romantic relationships and dating as everyday conversation and if it’s too awkward, consider working with a social coach to get past the difficulty.”

— IRL Social Skills founder, Mara McLoughlin

4. Taking safety precautions when meeting someone new.

Your safety is paramount when dating. If the person you’re going out with isn’t someone you know well or have ever met before, arrange to meet in a public place the first time you connect with them.

If you feel unsafe on a date at any time, try to get near other people who can help you. Pay attention to the warning signs in your gut and on your skin. Don’t take rides with people you don’t know, even if you’ve met them once or twice. Consider using a rideshare app for transportation; it is a much safer option until you get to know someone.

Always tell a friend, social support, or parent when you’re going out to meet someone. Tell them what you’ll be doing and where and when you’ll be back. If you’re having a good time and stay out later, let your support person know so they don’t worry.

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Dating Tips for Autistic Teens and Young Adults, continued from page 15

5. Making an excellent first impression.

You only get one chance to make a first impression. Successful dating requires paying attention to your hygiene and appearance, regardless of who you’re dating.

You should be comfortable on a date and put extra effort in to make a good impression. Questions to consider as you prepare for your date:

3 Are my clothes clean and appropriate for the event?

3 Is my hair washed and combed?

3 Did I put on deodorant?

3 Did I brush my teeth so that my breath is fresh?

Checking these off as you prepare for your date will go a long way toward making a great impression.

6. Letting your social skills shine.

The absolute best way to get to know others is by asking questions. Thoughtful and curious questions show the other person you’re interested in learning more about them. When your date shares something about themselves, ask follow-up questions to bring out more information. People generally enjoy talking about themselves and the things that they’re interested in.

You’ll also want to answer your own questions, in case your date doesn’t ask you. This way, you have a two-way conversation while allowing the other person to get to know you.

Actively listening, asking questions, and paying attention are all social skills that can be learned and practiced to make your dating efforts more comfortable, confident, and successful.

FUN FACT: If you need help with these essential social skills, our Skills Academy Workshops can help!

7.

Paying attention without sustained eye contact.

Sustained eye contact can dysregulate some autistic people. However, it’s also a nonverbal way to communicate. Making eye contact with your date shows them you’re interested in them.

However, if making eye contact is difficult for you, tell your date so they know not to take it personally. You can always look at their mouth, forehead, or eyebrows if the intensity of eye contact is too uncomfortable. Practice with some friends you trust or with a family member.

8.

Going with the flow.

People run late, have bad days at school or work, and cancel plans at the last minute. This doesn’t mean that your date has lost interest in you. Unexpected things come up that are out of the people’s control. It isn’t always about you.

Try to be understanding and assume the best. If it becomes a recurring pattern, ask yourself whether you’re okay with your date’s behavior or if you would rather see someone more reliable. You get to choose who gets to spend time with you.

9. Exploring physical intimacy.

Physical intimacy is one of the key differences between a romantic relationship and a friendship. Dating is not an assurance of physical affection or sex. People arrive at a point of readiness at different times—or never at all. Getting — or granting — consent is crucial before you make or respond to any moves toward intimacy.

Give your date nonverbal clues that you find them attractive and interesting. Turning your body toward them, nodding, and smiling as they speak are all great ways to show interest. As you become more familiar and comfortable, you might progress to subtle physical intimacy, like touching your date’s arm or moving to sit closer together, shoulder to shoulder. Even these sorts of subtle physical contact may require consent.

Advancing to more intimate displays of affection, like holding hands, hugging, kissing, and (maybe) sex DEFINITELY requires consent. If the other person wants to engage in intimacy, they will be more than happy to say yes! If not, you’ll be glad you asked first rather than have them move away or recoil.

Every relationship moves at a different pace regarding physical intimacy; ask your date directly if they are comfortable and interested in physical intimacy before you initiate it. Similarly, if you’re asked to get more intimate, clearly state what you’re comfortable with and when. You don’t owe more of an explanation. No is a complete sentence.

HOT TIP: Consent is not automatically granted, even though it may have been in the past. Consent may be withdrawn at any time for any reason...and should be respected, even if it’s uncomfortable or frustrating. Before advancing intimacy, always check in with your date or partner.

10. Handling rejection.

There’s a 50% chance that the person you ask out on a date won’t say yes. Rejection is a normal part of dating; it happens to everyone, and it often hurts to be turned down. If you’re rejected by a would-be date, shift the conversation back to your shared interests to help you both avoid embarrassment or discomfort.

If someone rejects you, don’t ask why. This can set you up for unnecessary emotional pain. Because you share a common interest, you may be able to cultivate a meaningful friendship with this person. We can always have more trustworthy and kind people in our support network — in our circle of real friends.

Dating while neurodivergent can be intimidating, discouraging, and a grand adventure! The excitement of dating can be enjoyable, but it can also be draining, particularly for anxious, shy, or socially awkward individuals. Check in with your body and nervous system after your date for clues about what it felt like to be with this person (interoception). Do you feel tense, or do you feel relaxed? You may find that you need time alone after a date to decompress and reset your nervous system (self-regulation).

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Dating Tips for Autistic Teens and Young Adults, continued from page 16

As with most social interactions, it takes patience to become comfortable and confident. Practicing these tips with friends or a family member will go a long way toward helping you navigate the complexities of dating.

For more support:

At IRL Social Skills, we help teens and young adults master social skills for every situation — including dating. We believe everyone deserves safe, healthy and rewarding intimate relationships. Need help with these essential social skills? Our Skills Academy Workshops can help.

Website: https://www.irlsocialskills.com

Facebook: https://www.facebook.com/irlsocialskills

Mara McLoughlin, MS, CCC-SLP is the founder and CEO of IRL Social Skills. IRL supports autistic and other neurodivergent teens and young adults by providing relational and communication skills, coaching to take them through middle school, high school, college, and beyond. Mara currently serves on the Oregon Commission for Autism as an #actuallyautistic and passionate advocate for inclusivity.

Do You Engage with Rhythmic Stimming?

By Lyric Rivera, NeuroDivergent Rebel

I am Autistic, and stimming is a big part of my Autistic experience of the world. I like to stim rhythmically with music, humming, singing, dancing, chanting, spinning, and flowing with the beats of my favorite tunes.

What is stimming, exactly? Well... in the medical context, stimming is defined by WebMD as: “self-stimulating behaviors,” precisely “repetitive motions” that may be used to “help cope with emotions.”

Stimming is something that EVERY human does to some degree and is something that many non-humans also do: tigers pacing in the zoo, for example, but Autistic and NeuroDivergent people stim a lot more.

In humans, some examples of stimming include: chewing, clicking your pen, tapping your fingers, rocking, pacing, jumping, spinning, humming, chewing and punching.

Stimming can be both conscious and subconscious. When we stim consciously and are aware of our stimming and the impacts our stims can have on us, our stims can become a tool we can use to bring our energy levels up or down.

We stim for many reasons, but mainly because doing so is natural for many of us. We stim because doing so can feel good, relieve pressure, or help us to be calm in a chaotic world, and soothe ourselves when we’re feeling overwhelmed or uncomfortable if there’s too much unpleasant sensory input around us.

In contrast to the conscious types of stims, subconscious stims (the stims we may not realize we’re doing) can be an outward expression of our natural Autistic body language.

Think rocking, pacing, chewing on our fingernails, twiddling our hair, things many of us do without awareness. These are things that many of us do pretty naturally when we feel anxious, have too much energy in our bodies, or are uncomfortable.

My stimming has a purpose and is tied heavily to who I am. If someone knows enough about what my different stims mean, it can tell onlookers a lot about what’s going on inside my mind: energy in, energy out. If I’m excited, happy, scared, angry, sad, tense, or feeling any intense emotion, it can be seen in my stims.

Our body language is natural and reflects how we’re feeling. Asking Autistic people to change, stifle, or hide our involuntary stims is like asking us to hide or change and tone down our body language, feelings, emotional, and sensory experiences.

Vocal stimming with the mouth, lips, diaphragm, and vocal cords can include humming, singing, grunting, repeating

words or sounds, and making other noises. Since I was very young, perhaps before I could speak, music has always been one of my main stims, especially vocally with music.

I was the teenager that was always walking around and always had headphones on and had my music with me everywhere I went, and now as an adult, I still have my music with me everywhere I go.

My first cassette was a green plastic tape filled with Christmas songs. When I was young, I would listen to the tape on repeat, over and over again, memorizing every word and note so I could recall them

for later singing when I wasn’t permitted to carry my tape player in public or to school.

Music, for me, is an essential regulation tool that has been a constant friend for most of my life and is tied into both my conscious and subconscious stims. I’ve instinctively been drawn to music since I was very young, long before learning I was Autistic.

If I am feeling overwhelmed, stressed, too amped up, or have too much energy in my body, I can put on a slow, calm, relaxing, or happy song, and it can help slow and cheer me up or slow me down because I am very easily influenced by things I am listening to.

Similarly, if I ever need more energy for something and I’m struggling to get my energy up, I am often able to use music. I can put on some happy, energetic, uplifting music if I’m feeling slow, and that can bring my energy level up.

Do you stim with music? Do you stim by humming, singing, dancing, or listening to music? Do you hear the same song on repeat?

This month’s question (that I asked Twitter): #ActuallyAutistic #AskingAutistics & #NeuroDivergent People: is music your main stim too???

Do YOU stim with music/engage with #RhythmicStimming???

Responses from #ActuallyAutistic Twitter:

(Editor’s note: Out of respect to #ActuallyAutistic contributors

Continued on next page

and Twitter styling, tweets have been shared as submitted and are a sampling of many responses. To search #ActuallyAutistic on Twitter, visit: https://bit.ly/askingautisticstwitter)

As a kid, singing was my stim!!!!! I love having music in the background. My NT Dad and I always believe that life should have a soundtrack. #ActuallyAutistic –Nora

Morales

Yes, I do a lot! I listen to songs I love in the moment over and over again until I move on to another set of songs. I mainly do this a lot when drawing. – Lindsey

Williams

I spoke on a similar thread about beat counts, tapping rhythms and playing the drums. I also play songs over & over again, especially if the song has certain notes and key changes. I stop and restart songs around those notes. I’m heavy into lofi/chill and slowed + reverb music.

– Lukizzy Moton, @Lukizzymoton

Yes it is and yes I do! – Anonymous

yes! my dad put headphones on me when i was little and i was immediately so excited about it! i grew up listening to amazing music like stevie wonder, whitney houston and celine dion, so music has always fascinated me, i love to stim when i sing, too. – Rebecca Murter, @rebeccamurter

#ActuallyAutistic Music is absolutely one of my stims. I use certain songs to sing to to calm down. I use certain ones to focus. All around it is a great way to stim and refocus myself.

– Iset, @IsetBouncyBear

I used to play a lot of music, nowadays just some line/tune pops in my head+ I just sing. It is very relaxing. I also listen to pink noise, though I have an air ventilation system in my house which makes a constant noise therefore I rather like to sing than play music.

– Tamara van Baalen, 46, NL (Netherlands)

I love loud music. I am learning my proprioception and tactile senses are under stimulated. I think the effect the vibrations have on my body helps this. – @ProprioFlo

I sing or whistle, tap or bob my feet along to the rhythm, play the drums on my bike handels etc. I’ve made many playlists, all depending on the mood/vibe of the songs, and

use them to alter my mood or stress level. Special interest, main stim and a life saver. #RythmicStimming – Linn

Music has always been a big part of my life. I need to make more time for it as an adult as I miss it. – Anonymous

It is and always has been. I always thought it was “silly” to get literally traumatized by my parents telling me over and over again to stop singing. Now I know why it hurts so bad and so deep. – Ravena Nunes

It’s my special interest forever probably. – Kai

To join in the conversation, here is the link to the original tweet: https://twitter.com/NeuroRebel/status/1571345381614559233

Reference:

1. WebMD. (2021). What is Stimming and what does it have to do with autism? https://bit.ly/stimmingandautism

This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Rivera. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics

Lyric Rivera is an autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other, and fosters collective understanding of the Autistic experience. www.neurodivergentrebel.com

A Day in the Life of Karen Krejcha

An Autistic Advocate, Nonprofit Founder and Former Professional Bowler devoted to Faith, Family, and Service.

By Jenny Bristol, Illustrations by Rebecca Burgess

Karen Krejcha is a multi-faceted autistic woman who, along with her husband John, has been running Autism Empowerment for the past 12 years. By creating an autistic and neurodivergent-led nonprofit organization, Karen and John, together with a team of dedicated, valuable volunteers, have been able to help countless families and individuals. Karen works at home, alongside John, where they both thrive and mutually support each other.

Karen grew up as a gifted child, easily excelling in some areas but struggling in others. As with most autistic people, she had her own mixture of often-typical autistic traits, and muddled through as well as she could. And as is often the pattern for autistic women, Karen was not diagnosed until mid-life, after her children were diagnosed.

Discovering her interest in bowling at a young age, Karen kept at it and took the passion all the way to the Pro Bowling circuit. Now, she spends a lot of her free time learning new things, helping others, and practicing her faith. She has a considerable list of other interests as well, including listening to music, being in nature, and doing puzzles. Karen’s path to self-understanding hasn’t been a straight line, but it’s clear that she has now found the way.

What does a typical work day look like for you (or, if there isn’t a typical day, describe one that is representative of your life)?

Hi Jenny! Thanks for asking! Although I definitely appreciate a good routine and vehemently oppose sudden noisy jolts (phones ringing, doorbells buzzing, neighbors power washing), my work days over the past year have been very inconsistent due to a variety of personal family health issues and emergencies

And if I’m being truthful in my analysis (which is really the point, right?), my typical work days post-COVID look quite a bit different than my days pre-COVID, particularly when it comes to the type of work I’m doing with Autism Empowerment and our various nonprofit programs like Spectrum Life Magazine

So, I’ll answer this in a couple ways. I’m going to share what is representative of my professional life today but before doing so, I’m going fill in a bit of backstory about Autism Empowerment and what my days looked like pre-pandemic.

My husband John and I co-founded Autism Empowerment (AE) as a 501(c)3 nonprofit organization in Vancouver, Washington, in June 2011. From September 1998 until January 2014, we also owned an online collectibles business called Count Your Beans, so, when we started learning the ins

and outs of the nonprofit world, we were used to working in the same home office for long hours without going bonkers.

We’re both neurodivergent. I’m autistic with ADHD and he has dyslexia and probably ADHD too. For many couples, working together and being under the same roof for so long would be a major challenge, but John is my best friend, the father of my children, and the person I love doing life with.

My job title at Autism Empowerment is Executive Director. It was essential to us that AE was an autistic and neurodivergent-led organization and that we also included parent perspectives in our board makeup. Everyone on our Board of Directors and in key leadership roles is autistic, neurodivergent, or a close family member of someone who is on the autism spectrum.

For most of the past 12 years, we have done the administrative part of our jobs from our home office. This includes a wide range of things like emails, phone calls, website design, social media, blogging, podcasting, Spectrum Life Magazine, program development, consulting, research, fundraising, board responsibilities, and a lot of paperwork! There were a few years in the middle where we also had office space where people could come meet us, but this decreased our productivity time.

Pre-pandemic, our physical programs were held at various places in local communities, including a key partnership for hosting support groups and service activities at Stephen’s Place, a loving adult care community home in Vancouver for adults with intellectual and developmental disabilities. Although many of our programs like Spectrum Life Magazine serve Washington, Oregon and throughout the United States, our in-person programs focused on youth, adults, and families in the Southwest Washington and Portland, Oregon metro area.

Pre-pandemic, the kinds of tasks which would take me out of my home office and into the community included:

• Participating in AE’s nonprofit programs and services. This included monthly support groups, social clubs, and service activities with our Autism Serves Kids Care Club volunteering program.

• Disability advocacy and coalition work at a local, state, and national level.

• Training for individuals, families, businesses, nonprofits, and service providers.

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• Exhibiting at resource fairs and speaking at conventions.

• Networking with other nonprofits, funders, and business professionals.

• Special events including fundraisers, an annual picnic, and, for four years, our Easter Egg Hunt for Acceptance of All Abilities, a fun event with a resource fair, over 60 community partners, 250 volunteers, and over 1,400 attendees.

During the pandemic, our in-person programming shut down since the places we held our groups and events were closed to the public. I also became sick with COVID-19 in March 2020. Three years later, I still have Long COVID effects.

Post-pandemic, although we still have special events and specialized consulting and training projects we work on, aside from my administrative tasks mentioned above, my other typical daily activity focuses on these areas:

• Advocacy for the underserved (autism, disabilities, and various intersectionalities).

• Serving as a positive community connector, bridge builder and autistic resource.

• Creating, sharing, and highlighting educational and inspirational content through various platforms (Spectrum Life Magazine, Zoom Autism Magazine, Autism Empowerment Podcast, YouTube, blogging, social media).

• Research and program development.

We regularly convey two messages: “Wherever you identify in your autism or autistic journey, Autism Empowerment is here to meet you along the way with acceptance, enrichment, inspiration and empowerment for the road ahead.” and “We all have gifts and strengths to share. Everybody can be an Ambassador for Acceptance of All Abilities.”

What hobbies or interests do you have outside of your work?

This calendar year, my husband John has been spending half the year in California and half here in Washington as we prepare to help my parents move to a senior living community five minutes from where we live.

When John is at home, aside from parenting stuff, we enjoy walking, working out together, doing different Bible studies, and having Friday family movie night in the living room with our kids, cat, and home theater popcorn machine.

We also watch TV in bed every night before going to sleep, usually around 1 - 2 am. We’re big fans of Survivor, having watched every season, and also love murder mystery series, particularly those on BBC. It’s a fun escape and allows us to test our sleuthing skills, point out plot mistakes, and plan the mystery book series we will write together soon.

I have always been a voracious reader. Murder mysteries are my favorite form of fiction, then thriller and suspense, science fiction and fantasy. Regarding non-fiction, I like reading about religion, spirituality, social sciences, self-help, entrepreneurship, business, tech, health, and wellness. I love learning, and if I

ever splurge on a room in my dream home, it will be one with a magnificent library!

I like doing research online too and enjoy teaching myself new things. When I was in elementary school, I (along with many other fans of Nancy Drew, the Hardy Boys, and The Three Investigators) wanted to be a private detective. I think that passion has stuck with me because I have a talent for finding and curating information about people and businesses, and deep diving into whatever my special interest is at the time.

This recently led me to start a consulting company called Spectrum of Voices, LLC, which includes autism and disability consulting, freelance writing, public speaking, training, voice over work, sensitivity reading, product testing, and other passions I want to eventually throw into the mix.

Other passions include writing (poetry, fiction, and non-fiction), singing, philanthropy, GeoGuessr, word games, puzzles, nature walks, and spending quality time with my husband, kids, fish, and feisty cat Zula.

How does being autistic help or hinder your work or hobbies?

When I’m passionate about a hobby or work project, I can often get into a zone of hyperfocus where I can be dialed in on that thing for hours on end. My analytical and creative sides help me with the quality and quantity of my work. If I’m truly very interested in something, I’m able to absorb and retain large quantities of information quickly. It becomes very enjoyable.

That said, I can get so lost in my thoughts and passions that l lose track of time and forget to notice my surroundings. I often lose track of time online jumping from one article, video, or website to the next. I’m the kind of person who literally has 15 browser tabs open at any given point in time. (Correction: I just counted and it’s 22.) Click, click, click!

The open browser tabs are actually a decent analogy for how it feels like my brain works late at night when I’m trying to sleep. I have all these boxes open in my head, each representing a different topic or segment of my life that is vying for attention. Instead of just thinking about one thing, and opening and shutting one box at a time, my brain tends to want to leave all my boxes open so that I can make connections, see patterns, and analyze all the day’s events.

What kinds of changes or accommodations do you make in your life to allow you to be successful?

I am most productive workwise when working from home and setting my own hours. I can wear the clothes that I want, listen to music I like, and enjoy the antics of my sweet cat Zula as she chews my desk calendar and walks across my keyboard in an attempt to show her dominance as alpha female.

My husband and I have nontraditional roles around the house. He does the cooking and most of the cleaning and, because I have a lot of sensory issues with smell, taste, and texture, this works out great. I handle our finances and this plays well to my analytical side.

I learned over the years that I have workaholic tendencies and difficulty detaching from work. Although my altruistic

intentions may be good, when I have not had healthy balance in my life, it has been a recipe for disaster. Working fewer hours is a change I have been focusing on for many years.

Nowadays, I define being successful

acknowledging and accepting where I’m currently at, giving grace and forgiveness to myself for my mistakes, and taking daily positive steps to work toward a well-balanced thriving life.

For me, this includes making consistent time for my priorities, including a strong personal relationship with the Lord; prayer; healthy relationships with my husband, children, and parents; regular exercise; meaningful service through Autism Empowerment; lifelong learning; cheerful giving; and pursuing my hobbies and interests.

Have you experienced discrimination or bullying because of your autism or autistic traits?

Yes as a kid, yes as a teen, yes as an adult, even to this day.

Some of the most hurtful judgment, harassment, and discrimination I’ve experienced regarding my autistic traits has come from adults, including those in positions of trust. I wasn’t officially diagnosed on the autism spectrum (originally as Asperger syndrome) until after my kids were diagnosed at ages 2 and 9 and I was in my early 40s.

In my youth and young adulthood, many of my traits were labeled as social awkwardness, giftedness, pickiness, or weirdness, much of which I eventually learned to socially mask as an effort to protect myself and fit in. In middle school and high school, I got involved with acting in musicals and community theater. Since memorizing scripts came naturally, I not only learned my parts in the plays but rehearsals gave me the opportunity to study how other teens would interact so I could learn to not draw negative attention to myself.

Teasing and bullying from kids can be very hurtful and confusing. Teens can be super mean, particularly if they think calling out your differences will gain them social status. My suicidal ideations started in 9th grade. As a perfectionist, I was my own biggest bully, beating myself up mentally if I didn’t score perfect on a test, telling myself I wasn’t good enough, I was fat, I was ugly, I was (fill in the blank). Whatever slight someone would throw my way, I would double down with my own self-devaluation.

After feeling rejected and alone, I attempted suicide my sophomore year by swallowing a bottle full of acetaminophen pills. After a short time, I freaked out and I told my parents who rushed me to the hospital where I was told that I would need to have my stomach pumped. That scared me more than the thought of dying so I lied and said that I made up the attempt because I was depressed and wanted attention. Only the Lord knows why I did not get sick from downing a bottle of pills, but it was a huge blessing. I started counseling the following week.

I was picked on and teased as a youth and young adult for a variety of reasons including shyness, oversharing, clumsiness, disorganization, being a teacher’s pet, being clueless about fashion sense, missing social cues, and obsessing on certain topics. The most painful thing I was picked on was regarding my weight and eating habits.

Although being overweight isn’t an autistic trait, being a selective eater is quite common for kids and young adults on the spectrum. Many of us end up battling lifelong eating disorders. Mine started when I was in preschool.

As a kid, I would eat very few foods. I was an only child and I was adopted, and my parents, bless their hearts, couldn’t understand why I was such a picky eater and didn’t want to try new foods like other kids. The truth was I had all sorts of sensory issues and aversions to a lot of different food smells, tastes, and textures. Trying to force me to eat something was not going to work. My food needed to be plain and it needed to be separated. Dry Cocoa Puffs cereal was my daily breakfast. Peanut butter sandwiches (no jelly) were my lunch. Dinner was often macaroni and cheese or a plain hamburger or hot dog. NO condiments, even to this day. No sodas because of the fizz.

Other kids noticed this and found it odd, particularly in the school lunchroom or during class snack time where we were all supposed to share the same group snack which was 90% of the time something I disliked.

I also drew negative attention to myself for some of my autistic giftings and strengths. I was a precocious child who learned to spell, read, memorize, and do math facts at a very early age. This put me above grade level academically and throughout school, I often participated in pull-out programs that took me away from my classmates. Kids knew who was in the Mentally Gifted Minors program and who wasn’t, and I always felt compassion for my classmates with dyslexia and other learning disabilities who were held back.

In the early 1970s, a neighbor whose son I went to kindergarten with gave me an IQ test. I liked tests and I liked to please adults so I was happy to hear that I had done exceptionally well. Eventually that led to more tests where I was identified as being gifted in pattern recognition and I got to meet “important” adults who were strangely excited about this. They would ask me lots of weird questions trying to figure out how my brain worked. They wanted to know if I could predict the future.

I was pulled out for “special studies” at Stanford University that had me take more fun tests and “play games” that had to do with reading other people’s minds. They talked a lot at the time about Extra Sensory Perception (ESP) and even tried to see if I was telekinetic and could bend spoons with my mind. (I couldn’t but I sure did practice at home afterward!) As a reward for each testing session, I would come home with free books. It seemed like a pretty sweet deal.

For many years I forgot about this but decades later when I was looking through some of my old school stuff my parents had kept, I found notes about the IQ test and it brought back intense flashbacks. I wonder how many other gifted children tested back in those days would later be diagnosed autistic. I wonder if any of them were able to bend spoons.

If you could go back in time, what would you tell your younger, undiagnosed self (as a child, teen, or young adult)?

This is fascinating. If I did go back in time and give my younger, undiagnosed self advice, it would have changed my life trajectory and I wouldn’t be writing this answer.

Continued on page 24

So many of the struggles and challenges I went through made me into the person I am today. Indeed, some of my best life lessons have come from learning to work through and overcome adversity.

But just for fun, and assuming the time continuum wouldn’t change, there are a couple things I would like to say to my younger self. I could fill a book, but here is a start.

1) You are a beautiful child of God. When you worry that you’re not enough or that you have to be perfect, remember that when God created the universe, He decided the universe was not complete without you in it. He loves you, faults and all, and chose your parents to adopt you. He wants to have a personal relationship with you throughout your life. And the great thing is that you can talk to him any time of day or night and he’ll always listen to your joys, fears, questions, or sorrows. Trust in God.

2) When you get to college and after a dance, some guy asks you to come back to his room to look at his record collection, that’s not what he’s really meaning. He wants to make out and isn’t going to understand why you’re pissed he only has three records.

What kinds of activities give you mental or emotional energy? What kinds sap your energy?

Activities that give mental or emotional energy: Bible study. Prayer. Walks in nature. Listening to music. Singing. Learning. Doing kind acts.

Activities that sap my energy: Spending time on social media. Trying to keep up with the latest news in autism and disabilities communities. Witnessing dysfunction and infighting among autistic groups, parent groups, and nonprofits.

What is a misconception about autistic people that you would like to dispel?

One of the big ones is the misconception that autistic people do not have empathy for others. In actuality, many autistic people feel very deep empathy, sympathy, and tremendous compassion for people who are going through difficult circumstances.

Sometimes this can be to the point that it is so overwhelming and painful that an autistic person might freeze, stim, or do something else to block out the intense feelings. They may be sensing positive or negative energy coming from other people in a room and get overloaded.

Other times a perceived lack of empathy may be the challenge that an autistic person is having in making sense of a neurotypical person’s social signals. For example, subtle shifts in body language, facial expressions, word choices, and tone of voice may lead to incorrect interpretations, particularly if an autistic individual does not know the other person well enough to pick up a pattern.

Empathy is a two-way street, and both autistic and non-autistic people face challenges in seeing the world from each other’s points of view. Unfortunately, it’s usually the autistic person that gets the negative check against them for misunderstanding.

How did you cope with the high pressure of being a professional bowler? Were there aspects of it that were well suited to being autistic, and some that made it more of a challenge?

I started bowling when I was in early elementary school. It was a sport I enjoyed throughout my life, and I happened to be fairly decent. I bowled collegiately, internationally, and in a lot of regional tournaments. Then in 1996, I decided to take the leap and go professional. I joined the Ladies Pro Bowlers Tour, which later became the Women’s Pro Bowlers Association.

Joining the tour full-time was a dream I’d had since my teenage years, but it was still a very difficult decision. I married John in 1992 and although we didn’t yet have children, touring took me away from home for 6-8 weeks at a time, multiple times per year.

We lived in California then, and I worked as the Regional Manager for a technical employment firm in the Silicon Valley. The money was good, and I was going from job stability and an upwardly mobile career to an unknown income. So I put a lot of unrealistic pressure on myself to do extremely well right away.

Women’s sports, particularly bowling, do not have big tournament prize funds. It cost about $1,000 a week to be out there with food, hotel, and entry fees, so if I didn’t make the cut one week, I had to hope I did really well the next. For me, there was a deep learning curve to tour life that went well beyond the lanes.

Naturally, I didn’t know I was autistic then, but my neurology came in handy regarding condition analytics, perseverance, and hyperfocus. I also didn’t mind driving across the country by myself from one tour stop to the next. However, in retrospect, my naivety and trusting nature did not set off the appropriate warning flags they should have when I stayed in rather seedy places to save money.

My main challenges were social dynamics. I didn’t understand the rules for how to break into the social circles of other pros.

Continued on next page

So, except for the first year when I had roommates, I hung out alone or with fans I met during the week.

Also, when I first started, I didn’t have a sponsor or coach, so I had to figure out my own equipment. On tour, different bowling company reps gave out free balls and shoes. If they thought you had potential or liked you, they would give you equipment for free, but you had to advocate for yourself and strike up a conversation. Being introverted and socially anxious, this was super tough for me. However, it was more difficult to be competitive without the right professional equipment for the touring lane conditions.

Ironically, I did do great socially with many fans. Maybe it was because they were pre-dispositioned to like and respect us because we were pros. We usually traveled to a different town and state each week, and before the main event, we would have meet-and-greets and connect with fans during Pro-Ams (fun tournaments where pros and amateurs compete together). The kids were my favorites; taking pictures and signing autographs was fun.

Although I only fit in with some of the other pros, I always tried to be friendly and appreciative for the opportunity to compete. That earned me respect and acceptance, and even though I never won any major events, my game improved, and I received a nomination for the Robby Sportsmanship Award in my second year. I also began to find my groove and found a sponsor with one of the ball companies.

As far as coping with the pressure, missing John eventually got to me. I was proud that I had gone for my childhood dream and traveled most of the country alone, but I realized there were more important dreams ahead. John and I wanted to start a family, so I left tour in late 1998 and we had our first baby a year later.

What are your favorite aspects of running a magazine?

Fun fact: I initially wasn’t sure how well the magazine would be received, so I asked for my husband and son Ryan to pose in our backyard while I took pictures for our first cover. It was a summer issue, and with Father’s Day coming up, our cover feature was “Dads Helping Dads.” My logic was if the magazine flubbed, at least the grandparents would have a cool keepsake!

Fortunately, all worked out, and here we are today! This issue marks our 7th year of publishing! We are proud of being an autistic-led publication with plenty of neurodiverse voices throughout our pages.

As Editor and Publisher, what I love most is giving opportunities for a diverse range of people to share their stories and see their words published for thousands to read. We actively feature neurologically, ethnically, financially, spiritually, and geographically diverse people of all ability levels.

All our media programs focus on positive and uplifting content, while still providing a platform to advocate respectfully for the real issues and challenges that autistic people and their families face. We will always have meaningful content because there are always essential stories to share!

What are the best ways for people to connect with you?

As my information regularly updates, Linktree is the best place to consistently find my personal and professional social media, email and website contact links.

Linktree: https://linktr.ee/karenkrejcha

LinkedIn: https://www.linkedin.com/in/karenkrejcha

Twitter: https://twitter.com/ambassadorforae

I do receive a lot of work and personal emails and currently have an assistant that helps to screen. If you don’t mind this, you can reach me at karen@autismempowerment.org and please allow some time for a response.

Is there anything else you’d like to share?

Yes! I consider it an honor to have the opportunity to share and be vulnerable with our Spectrum Life readers. If there is anything I can share about my life experience that might help someone else, I am happy to do so.

In my original interview questions, there was a section on advice and words of wisdom that I had for youth and adults on the spectrum, as well as parents and family members. Due to space constraints, that portion of this interview will be in a special extended interview and upcoming Autism Empowerment podcast: https://www.spectrumlife.org/blog/adayinthelifeofkarenkrejcha

Jenny Bristol is a Gen-Xer who was diagnosed autistic at age 45 and has been having a series of lightbulb moments ever since, finally understanding her entire existence. She is an autistic advocate, freelance writer and author of several books, Editor-in-Chief of the geeky parenting blog GeekMom.com, and parent to two incredible autistic adults. She works hard to promote the social model of autism rather than the medical model, encouraging people to understand that a child’s behavior is a form of communication and a reflection of their inner struggle, not something to be punished. Visit www.JennyBristol.com

Rebecca Burgess is a comic artist and illustrator working in the UK, creating award winning published and small press work. Along with drawing comics for their day job, Rebecca also loves drawing webcomics in their free time. Being autistic, they are particularly passionate about bringing more autistic characters into comics and stories! Outside of drawing comics and cuddling their cat, Rebecca also loves playing RPGs with friends, going on deep dives into history and growing vegetables in their humble Bristol garden. Visit www.rebeccaburgess.co.uk

Ask Spectrum Life

Niko's goal is to shed light on the realities of being nonspeaking. He is excited to share his experiences and is passionate about advocating for the potential of nonspeaking autistics. Niko is very interested in hearing from other nonspeaking autistic people and their parents.

Navigating with Niko blog: https://www.spectrumlife.org/navigatingwithniko.

Facebook: https://www.facebook.com/nikoboskovicPDX/

Dear Niko: I am a [provider], and one of the children I see is really struggling with Obsessive Compulsive Disorder (OCD). Before he can spell with me there is a ritual he has to complete that can take 5 minutes. I have read before that you struggle with OCD. Do you have any tips for us?

Niko: I have a lot of rituals. I have them on my own, with individual people, and in public places that I go to frequently. I think we all have rituals which we rely on to predict the way some part of our day will go.

For instance, I get up and prepare my bedroom in a certain way before I go upstairs for breakfast. I eat the same thing for breakfast (a bagel with cream cheese, a sliced apple, scrambled eggs with soyrizo and jalapenos, and a cup of coffee with cream) and then brush my teeth.

Afterwards we go for our drive which takes us on a circuit around NE Portland, Oregon. When we get home, I put my iPod on and we walk the dog on one of two routes depending on the day. This is followed by lunch and then we usually read or write for a few hours, after which my mom goes to prepare dinner while I hang out in her office.

Having a predictable routine is so comforting to me because I can store up energy for when things have to be more flexible. Sometimes I may find that the predictability is keeping my OCD in check and I have less anxious moments.

Other times I can be open to new activities if I get my daily drive and walk done early and I’m prepped ahead of time. (My mom usually tells me a day in advance of appointments or other obligations coming that week and gives me a reminder the morning of, and this system works for us.) Perhaps it could be less structured or reliant on a car, but it works for us.

There used to be a time when my mom was unsure about letting me do the rituals I liked because she was unsure about whether it was healthy to do them. For example, she knows that stimming is good, and I’m never stopped from doing that.

Navigating with Niko

However, sometimes my OCD can be mistaken for stimming, and then it’s like I can’t stop or I feel really anxious. That’s been the main difference between stimming and OCD behaviors: if the action makes you feel better and you walk away feeling more balanced, then it’s likely a stim that’s regulating your well-being. If what you want to do feels like you HAVE to do it, but once you do, you feel ashamed or anxious, it’s probably OCD and maladaptive to your well-being.

I don’t know whether the person you’re working with is doing that five-minute ritual as an OCD behavior or what, but what does that matter? In the bigger picture, what’s his spelling like? Does he need some kind of warm-up exercises to ready his body? I think sometimes professionals forget that we *all* do things to prepare ourselves for big activities. Like, I will have to complete a certain number of steps in the office before I can transition to dinner. This is an OCD ritual for me, but in the bigger picture, it’s just something I like to do and it doesn’t affect anyone.

People being understanding of my need for predictability has been a gamechanger because I have their support to take care of myself. I’m not made to feel like something is wrong with me for wanting to go on the same car ride every day. No one cares, and my mom will get me up early to do it on the days when I have other obligations. I am wholly supported in my regulation, and as a result, I need less of it some days.

So the answer to your question is rather simple: would you be willing to spend those five minutes being present and supportive of your young nonspeaker, or would you rather focus your attention on changing a behavior that may or may not be affecting his communication?

This is not a fixed answer, and the response depends on the reasons why your speller is doing his ritual. I would urge you to consider the reasons why you’re asking too - is it because you’re worried about “wasting time” on a ritual?

I’ll remind you that time passes differently for autistic people, and an activity that regulates their mental well-being should always be encouraged! This will show your understanding

Continued on page 27

In this issue, Spectrum Life columnist Niko Boskovic answers reader questions from his unique perspective as a nonspeaking autistic advocate who uses a letterboard to communicate.

and respect for the ways our brains are wired and will help your relationship because we will feel seen.

And who doesn’t want to be seen, really seen, by others in a relationship regardless of whether that’s a professional relationship or one with a family member? It will come back to you in countless ways.

Dear Niko: What does an inclusive workplace look like for you?

That’s something I wish I knew more about! I have little job experience to compare to, but I know what I DON’T want: anything segregated away from the general public or part of a subminimum wage program. The good news is that sheltered workshops (where one would typically find subminimum wage programs) have been phased out in Oregon. There has been a push for supportive employment services, especially for people like me who are considered to have “high support needs.”

The thing is, there is such a gap between the needs of families and adults who rely on Personal Support Workers (PSW)

I also worry that it’s going to be hard to get back into a workday with people who will expect a base rate of productivity from me. This is centered on the standard of a 40-hour work week with few opportunities for rewarding work that includes creativity and input. So many constraints come from trying to meet neurotypical standards while working when you operate on a different wavelength.

I can tell you that I would love to find a job that’s in my neighborhood where I could work in a small company behind the scenes so that I don’t have to interact with the public.

It would be a mix of manual labor and creativity; where my silence would be accepted and my spelling expected; it would feel like a second home at times. I would like to be intellectually challenged and be an active contributor to the discussions about whatever is the pressing issue at the moment.

Somehow it would be an easy situation for everyone, not just me, because my accommodations would be enjoyed by others, much like curb cuts benefit everyone, not just people who rely on wheelchairs for mobility.

services and the professionals available, that we’re in a state of crisis staffing-wise. Families have taken the brunt of it, and after three years of living with Covid, we are worse off than ever. I’m not talking only about employment supports, but also in terms of school and healthcare and our collective disability identity. Therefore, it’s really challenging to theorize on what would make a workplace more inclusive.

I want to mention that it would be wonderful to include people who have a bit more experience being a disabled employee in this discussion because I feel a little lost at the moment. I haven’t worked for over three years due to the pandemic and its detrimental effect on the professional caregivers available to support me.

If this sounds inclusive, then ask yourself, “Would I like to work there?” If the answer is “Yes, but...” or no, then what would an inclusive workplace look like for you?

I think that’s how we should approach inclusion with people first and foremost. In other words, there needs to be some introspection as to where one places oneself in regards to the full inclusion of disabled people in society.

Inclusion might be the goal for your child or client, but do YOU believe that disabled people should be fully included in the community?

Continued on page 28

Photos courtesy of Loreta Boskovic

You may wonder at the question, but it’s pretty scary how many of us hold outdated views about people with Intellectual/Developmental Disabilities (I/DD) and to what level they belong in public. There may be a lack of experience on their part because they haven’t been exposed to disabled people firsthand or in a positive light.

There is also a lack of positive disabled narratives in the media which shrinks representation down to curated stories. In other words, people don’t know what they don’t know, and our individualistic society doesn’t really care unless there is some personal connection or gain.

Inclusion is more than being at a job where the majority of employees are not disabled. Just like general education is not automatically inclusive, having a position in a workplace doesn’t mean you’re automatically included. It’s a natural part of life, yet we shrink from disabled people out of naivete and prejudice. When there is accountability for one’s own self, it changes the narrative and shifts responsibility for change onto more shoulders.

That’s a wonderful thing too because real change won’t happen without the support of allies like family members, co-workers, friends, and professionals who see the benefits of including everyone in society, not just some disabled people.

Niko Boskovic is a 21-year-old autistic adult from North Portland, Oregon who uses a letterboard to communicate, advocate and share his passions and ideas. He graduated in 2019 with an Oregon high school diploma and currently takes classes at Portland Community College in writing and history. Niko is passionate about poetry, nature, family, and disability justice and is very pleased to be able to share his thoughts and experiences with youth, adults and families in autism communities through his monthly blog at Autism Empowerment and Spectrum Life, Navigating with Niko. Facebook: @NikoBoskovicPDX

IT’S A SUMMER OF REIMAGINATION!

PODCAST PROGRAMMING

Autism Empowerment Podcast

We’re back again this FALL! (Hooray!)

Wherever you identify in your autism or autistic journey, Autism Empowerment is here to meet you along the way with acceptance, enrichment, inspiration, and empowerment for the road ahead.

Episodes, Trailer, Show Notes, and Transcripts at: www.AutismEmpowermentPodcast.org

Autism Empowerment

www.AutismEmpowerment.org/donate

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• Autism Empowerment Cares

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Subscribe on Apple Podcasts, Spotify, Google Podcasts or wherever you listen to your favorite shows.

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Due to circumstances beyond our control, Autism Empowerment will not be hosting our annual summer picnic in 2023. See you in 2024!

However, come say hi as we will be exhibiting at the Vancouver Autism Moms Autism Family Picnic & Resource Fair. Contact melissad722@msn.com or 360-901-0492 for details.

Saturday, July 9th, 2023 11 am - 3 pm

Marine Park, 4500 Columbia Way, Vancouver, WA 98661

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INCLUSIVE WAyS TO HAVE FUN

Photo courtesy of Brian Tashima

Joel Suzuki’s Swan Song

By Karen Krejcha

Brian Tashima’s epic sci-fi/fantasy book series about an autistic hero in a land of music and magic comes to a thrilling conclusion... or does it?

For the past 12 years, author, musician, philanthropist, and content creator, Brian Tashima has been captivating and entertaining teens and adults with his award-winning Joel Suzuki Series. When we last checked in, Brian had celebrated 10 years of Joel Suzuki with the recent release of his fifth novel.

Since that time, Volume Six: Dance of the Darkeye was released in 2022 and the most epic mind-bending tale to date (in this reader’s opinion) is set to launch in July 2023. Spectrum Life Magazine shares the exciting details in this exclusive interview.

Hi Brian! It is great to be connecting with you again! For our readers who are meeting you for the first time, please share a little about yourself.

Hello! I’m a content creator producing various types of media, including novels, music, screenplays, comics, podcasts, and more. I’m originally from Hawaii but have been living in the Pacific Northwest – specifically, Vancouver, Washington –since 2000.

What is your personal relationship with autistic and neurodivergent communities?

I have immediate family members who identify as autistic, including my son. Also, having been actively involved with the autistic and neurodivergent communities for a long time now, I have many friends and associates who are either on the autism spectrum or are related to someone who is.

You have been a Board Member at Autism Empowerment for many years. How did you originally connect?

Before Autism Empowerment was founded, the oldest child of the organization’s founders and my son were classmates in grade school, so it was through them that we first met. Then when Autism Empowerment started up, I received an invitation to become a Board Member, which I happily accepted. And later, when Spectrum Life Magazine became a program of Autism Empowerment, my role as a Board Member and my background in writing gave me the opportunity to be on the magazine’s Editorial Advisory Board. I’m proud and honored to be a part of the organization and I look forward to many more years of serving.

That leads me to your young adult fantasy and science fiction writing. Please tell us about the Joel Suzuki Series and its progression.

Joel Suzuki is a series of young adult novels about an autistic teenage boy who travels to Spectraland, an island on another world where his autism allows him to perform magic. It’s geared for an audience of around 13-18 years old, but I think that anyone who is a fan of fantasy and science fiction would enjoy it.

Please share a couple highlights from each of the first five books in the series.

The first book, Secret of the Songshell, is when Joel makes his initial trip to Spectraland. There, he meets another autistic teenager, Felicity Smith, and together they embark on an adventure to locate a powerful lost artifact so they can save both Spectraland and Earth.

In the second book, Mystery of the Moonfire, Joel and Felicity return to Spectraland, where many years have passed, to help an old friend with a crisis that threatens all life on the island. They’re also introduced to a host of new characters, which leads to the start of a love triangle.

https://www.spectrumlife.org/blog/a-literary-hero-for-allabilities-53

The third book, Legend of the Loudstone, sees Joel and Felicity venture beyond Spectraland’s borders to a mysterious continent across the ocean in order to capture a dangerous group of escaped convicts. They’re accompanied by some of their friends from the island, causing the love triangle to grow more complicated.

https://www.spectrumlife.org/blog/a-journey-of-musicand-magic-the-joel-suzuki-series-50

Continued on page 32

In the fourth book, Fable of the Fatewave, Joel learns of his destiny as the “chosen one” and has to travel back in time to save his mentor while not ruining the present time in the process.

https://www.spectrumlife.org/blog/a-new-joel-suzukinovel-just-in-time

Then in the fifth book, Ballad of the Bluerock, Joel finds himself stuck on Earth with no way to return to Spectraland, which he must do in order to fulfill his destiny and save all of existence.

https://www.spectrumlife.org/blog/ballad-of-thebluerock-611

Each book has its own self-contained story with a beginning, middle, and end. But together they form one larger, continuous arc, so reading them in order would be the best way to enjoy the series.

Multiple characters in your series identify as on the autism spectrum. Tell us a bit about the major players and your inspiration behind creating them.

The story’s two main protagonists, Joel and Felicity, are both on the spectrum. The primary antagonist—whose identity I won’t reveal, to avoid spoiling it for anyone who hasn’t started reading the series yet—is, as well. The idea behind having both the good and bad guys identity as autistic was to show that being on the spectrum shouldn’t pigeonhole you one way or another—you can be good, bad, or somewhere in between, just like anyone else. Regardless of ability, we’re all people.

Why do you believe it’s important for young people to have literary heroes they can respect or relate to?

I think that if young people can identify with the heroes of the books they read or the movies they watch, it inspires and empowers them and helps build their sense of

self-esteem. They can point to these characters and think, “Hey, they’re just like me.” I’ve always been a big supporter of representation in media, so when I started writing the first Joel Suzuki book at the request of my son, I wanted to make sure I gave him and other kids like him a fictional role model they could see themselves in.

On the converse, the primary antagonist is a pretty evil egodriven person. What responsibility do authors have for making sure the characters they write don’t correlate being evil with autistic neurology?

A big responsibility, definitely. I would recommend that any author writing autistic characters employ a sensitivity reader – someone who reads a draft of a manuscript and checks for stereotypes, bias, etc. – to make sure they’re portraying their characters in an accurate and respectful manner. As for the primary antagonist in the Joel Suzuki series, I tried to make sure that his evilness arose from his personality, not his neurology, and I took every opportunity to contrast him with the protagonists.

Tell us about Volume Six: Dance of the Darkeye.

Dance of the Darkeye is the story of how Joel, after finally returning to Spectraland, attempts to “level up” in order to defeat the main villain. Of course, because things are never easy, to accomplish this he and Felicity are forced to take a hazardous journey across alternate realities, putting their lives in jeopardy every step of the way.

While you might be able to read any of the first five books as a standalone and sort of understand what is happening, with this book we’re getting close to the end and things are moving fast, so you probably need to be caught up with the whole series in order to follow along.

The series gets more complex over time. How does Volume Six differ from Volume Five and lead into Volume Seven?

Volume Five, which takes place almost entirely on Earth, is sort of the palate cleanser before we jump into a wild ride to the finish line that starts with Volume Six, where you have multiple timelines, superhero teams, alien invasions, and more. Then things get even more surreal with Volume Seven. I consider Volumes Six and Seven to be two parts of one story, unlike the first five books.

I’m really excited for people to read Volume Seven. What a wild mind-bending ride! Not for the faint of heart. Do you have a title and release date yet?

I do! It’s called Vision of the Virtuoso, and I’m planning on releasing it in July 2023, around the 11th anniversary of the first book’s release.

How would you describe this book to readers?

Dark, weird, and epic. There are sections of it that read like an anthology, and also parts that probably qualify as experimental fiction. It’s also the first book in the series to contain a content warning. There isn’t anything too extreme, but there are moments that are a little more intense than anything in the previous six books.

At one point there were cameo appearances or mentions from many past characters. It was a fun and awesome tribute to the series. How did you keep track of all the character arcs and storylines over the past 12 years?

A lot of it is in my head, but I also re-read the first six books all the way through prior to finishing the draft of the seventh, just to refresh myself and make sure I wasn’t contradicting anything. And then I leafed through them once more when writing a particular scene near the end of Volume Seven where over a hundred previous characters all show up at once.

What are the themes of Volume Seven, and the series as a whole?

Acceptance is the main theme of the overall series. And then each individual book is about what I consider to be a form of acceptance: gratitude, confidence, love, fate, belief, trust, and forgiveness, which is the theme of Volume Seven and is also an integral part of the plot itself.

Are there any fun, “behind-the-scenes” facts about Volume Seven, and perhaps Volume Six as well, that you’d like to share?

While I was working on Volume Six, my editor for the first five books had to move on due to other commitments, so she recommended a replacement who, along with being a terrific editor, just so happened to be autistic, which I thought was pretty cool.

Is Volume Seven really the end of the Joel Suzuki Series?

It’s the end of the main story. I have ideas for an additional four volumes, but they would be more like “post-adventures,” or possibly prequels. I’m not sure if they’ll ever get written, but that’s not a decision I’m making right now, and at the very least I’m going to be taking a break for a while.

How do you feel about the main story arc coming to an end?

I’m happy to have finished it, and it was surreal to be writing certain scenes that I’d had in my head for over a decade. There’s also a sense of grief, because I’d been living with these characters constantly all these years, and now it’s like, “okay, see ya!” So whatever break I do end up taking might be short-lived.

Now that the main series is complete, which were your favorite books to write and why?

Tough question! I enjoyed writing each book, because I love these characters and these stories and putting all these ideas down on paper. That said, writing is a long, challenging process that takes a lot of energy, so I would say that maybe this latest one was my favorite, because it came together quickly, almost like it was writing itself.

What are you going to do now with all your “spare” time? Any new projects, like possibly Joel Suzuki spinoffs or any new series with neurodivergent characters?

I have ideas for some short stories set in the same universe that would feature characters other than Joel during time periods that the books kind of glossed over. I also have a feature film script that has Joel’s cousin April, a minor character in the series, as the lead. She’s not on the spectrum, but there is a character who is, and he plays an important role in the story.

As for other new projects, my band Second Player Score is releasing our fourth album, titled 4-D, this summer. We’re also a multimedia production team that will be co-producing a short film with Autism Empowerment tentatively titled Hold My Beer that is meant to hopefully be the pilot episode of a scripted series. It’s a drama-comedy about an autistic young adult who, after receiving a tough-love ultimatum from their parents, discovers that beer is their special interest and decides that their life’s goal is to open their own brewpub. So all of that will keep me busy.

Where can readers find your books, your blog and all things Joel Suzuki and Brian Tashima?

Info on Joel Suzuki, including links to where the books can be purchased, are at https://www.joelsuzuki.com/

My blog can be found at https://briantashima.blogspot.com/

Also, https://secondplayerscore.com/ has more details about Second Player Score, our music, and our various multimedia projects.

Spellbinding Karen Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 30 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.

College Choices for Students on the Autism Spectrum Finding the Right Place for You

by Laurie A. Drapela, Ph.D

Imagine yourself a teenager with autism. High school days are nearing an end and one of the most significant transitions in your life is coming up very soon – the end of state-mandated compulsory education. Nearly all high school students greet this transition with relief, joy, and a little bit of trepidation. As a teen on the autism spectrum, you may ask yourself the same question as your neurotypical peers: what next?

Several decades ago, very few persons on the autism spectrum attended institutions of higher education, be it community college, trade school, or a four-year college or university. Autistics earning graduate or professional degrees — like doctoral or law degrees — were rarer still.

(Editor’s note: Although it was rarer for people to hear about autistic people attending college, part of the reason was because many autistic people attending were doing so undiagnosed and with no academic accommodations. They were not openly on the spectrum. As awareness about the autism spectrum and the Asperger syndrome phenotype increased in the mid-1990s - 2010s, many older adults who had already completed or left schooling started getting diagnosed for the first time.)

As the prevalence of autism increased through the 1990s and into the 21st century, the quality of social supports for persons on the spectrum also increased as did the acceptance of autistic people in society. As autistics successfully completed high school curriculums, researchers noted that they enrolled in higher education curriculums at lower rates than persons with other disabilities (Longtin, 2014; Petcu, Zhang, & Li, 2021).

Adjustments during the first year of university were also more difficult for autistic students, relative to neurotypical students and students with ADHD (Baczewski et al., 2022). In response, persons with autism, their families, university support personnel, and faculty worked to incorporate neurodiversity into campus life and culture, bringing new energies to college campuses. Such efforts have culminated in the term “Autism Friendly University” (Sweeney et al., 2018).

Students on the spectrum answering the “what next” question with higher education in mind now have more choices to consider when planning their futures than in years past. The following paragraphs describe the types of interventions incorporating autism knowledge into university life in ways that enrich higher education for campus communities.

Specific search tools and campus interventions will be highlighted in hopes that students with autism may look for similar approaches at colleges and universities in their geographic area.

Finding the Right Place for You:

Helpful Guides Identify Campuses Practicing Neuro-Inclusion

Persons on the spectrum looking for the best higher education fit to their needs, desires, talents, and energies will find several tools at their disposal.

College Autism Network (CAN)

https://collegeautismnetwork.org/

The College Autism Network (CAN) is a clearinghouse of colleges and universities incorporating autism education and supports into classrooms, dormitories, student life, and student governance. The site provides detailed information on Autism-Specific College Support Programs (ASPs) among institutions across the United States.

The programs range from two-year associates style degrees to post-graduate programs assisting autistic Masters and Doctoral students. In order to appear on CAN’s ASP list, the institution offers “a comprehensive academic and social college-based support program designed specifically for autistic students currently enrolled at a college or university” (CAN, n.d., n.p.).

Typically, ASPs include 1) testing and class activities accommodations; 2) curriculum planning accommodations; 3) tutoring services; 4) specialized assistance with orientation and transitions; 5) parent involvement; 6) social skills assistance; 7) life skills supports; 8) mental health supports; and 9) peer mentors (Nachman et al., 2022, pp. 863-864). CAN staff verified aspects of institutions’ services for students with autism via email correspondence with lead representatives of said programs.

The CAN database allows users to craft their lists of autism-friendly institutions of higher education by region of the country (U.S. only), public/private/non-profit status, and specific practices integrating persons with autism into campus life – from testing accommodations to peer mentors.

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College Choices for Students on the Autism Spectrum, continued from page 35

Their published report identified 47 total programs representing a little more than 2% of institutions of higher education in the United States Public institutions were about twice as likely as private institutions to support ASPs and the Mid-East region offered a disproportionately high proportion of these programs. (New England-based colleges and universities offered the least.) On the American west coast, colleges and universities offering ASPs were mostly located in California.

Another unlikely guide to U.S.-based colleges and universities integrating neurodiversity into higher education comes from Dublin City University. Published in 2018, Sweeney and colleagues provide specific examples of U.S.-based institutions of higher education with devoted resources integrating persons on the spectrum into campus life and learning.

Two highlighted campuses are in the Pacific Northwest: Portland State University, Portland, OR

Portland State University’s Disability Resource Center provides institutional support for students on the autism spectrum (e.g., accommodations) but there are also opportunities to participate in autism training and research led by faculty – some of whom are on the spectrum.

https://www.pdx.edu/disability-resource-center/

The School of Social Work’s Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) emphasizes partnering with autistic adults (and adults with autism) to better understand concerns associated with accessing health care, aging, and living in general. Using an approach known as Community-Based Participatory Research, persons with autism articulate their perspectives on what effective health care outreach looks like from their perspective.

Bellevue College, Bellevue, WA

Bellevue College’s Center for Career Connections administers the Neurodiversity Navigators, where students on the spectrum are supported in the classroom and on campus. They learn self-advocacy skills applicable to classrooms and their larger lives. One area of emphasis is Science Technology Engineering and Mathematics (STEM).

https://www.bellevuecollege.edu/autismspectrumnavigators/ The Disabled Students Navigating STEM curriculum is implemented in cohort groups allowing for supportive social networks studying these fields to grow over time, as students move through classes in the curriculum together.

If the campus of interest provides residential facilities, what kinds of accommodations exist for autistic students?

Many residential campuses offer “Living and Learning Centers” (LLCs) that group students together based on shared interests and needs.

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One example is Texas A&M University’s ACHIEVE https://aggieachieve.tamu.edu/about/, a transition curriculum focusing on persons with intellectual disabilities who have completed high school and are ready for college.

Finally, campuses under serious consideration by an autistic student and their families should receive a campus visit.

This is important for all students, but especially persons on the spectrum. Campus visits provide real world information beyond brochures and websites, relaying critically important information.

Coursework, internship opportunities, and extracurricular activities integrating neurodiversity ideals and practices into campus life provide opportunities for autistic students to successfully transition to this next stage of early adulthood.

For students on the spectrum who may not have access to these colleges and universities, exploring state and local campuses practicing autism inclusion for both social and intellectual activities is essential.

Bear in mind, most colleges and universities provide access to 504 Plans — that is Section 504 of the federal Rehabilitation Act of 1973 — available through their student services divisions.

Students on the spectrum looking for neuro-inclusive higher education opportunities — ones that focus on explicitly including autistics in campus life through support groups or other dedicated services — may start at the student services division of their desired college or university to explore their options.

Are there services specifically for students with autism or other intellectual disabilities (so-called “invisible disabilities”) or does the student services unit conceive as disability accommodation from a purely physical standpoint?

An example of neuro-inclusion at a non-residential campus comes from Clark College in Vancouver, WA. Clark offers an Autism Spectrum Success Group through the Counseling and Health Center.

https://bit.ly/clarkdissupport College clinical staff facilitate the group and provide opportunities for students on the spectrum to receive support while attending courses. The group also provides students with autism opportunities to advocate for themselves by seeking input on how to enhance the campus for persons on the spectrum.

Students partaking in the Autism Spectrum Success Group suggested a sensory room be created on campus to promote self-regulation for autistic students. Such an addition is currently underway at the campus.

Of note: a similar space to accommodate people needing a sensory break was added to Portland International Airport in January 2022.

For example, autistics with sensory issues or other co-occurring conditions should tour the living arrangements (dormitories, dining halls) and classrooms where they will spend much of their time. Receiving guided tours of these facilities in smaller groups may be a possibility, with the optimal tours incorporating specific areas of campus and specific personnel designated to assist first-year students on the spectrum with their transitions to college life.

CONgRATULATIONS you’ve been accepted! Your exciting journey is just beginning.

Your first year of higher education is unlike any other — this is true for all students. Living a neurodiverse life on campus may entail different first-year transition journeys among neuroatypical students.

The importance of mentors and need for community among autistic students are common refrains throughout the research and advocacy literature, but how are neurodivergent people in their late teens and early twenties supposed to accomplish this?

Autism Goes to College (AGC) -

https://www.autismgoestocollege.org

Enter Autism Goes to College, an allpurpose user-friendly resource that dives deep into the college experience for persons on the spectrum and their advocates. The site provides advocacy and support from students on the spectrum who narrate podcasts on how to adjust to college, to socially engage other people, to navigate the anxieties that go along with such a momentous transition, and how to advocate for themselves with neurotypical others.

AGC began as a documentary film released in 2019 following a cohort of five autistic students transitioning to their chosen institutions of higher education.

Each student is profiled on the AGC website providing a range of experiences, triumphs, letdowns, and self-discoveries that flesh out the full human experience of major life transitions from a neurodivergent perspective.

https://www.autismgoestocollege.org/student-stories

“The Fabulous Five,” as they are described on the student profile page, integrate social, romantic, intellectual, and career aspects of their lives as they graduate and live as free and full people. Over the past three years, the site builds from these five students to include podcasts of other autistic students’ journeys.

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For example, James T. describes his dream to attend a Historically Black College and University (HBCU) (Podcast Episode 10, ‘Plan B’). Once there, it just wasn’t the right fit for him – he describes the social environment (and the dorm scene) as difficult to navigate. He transferred to the University of Missouri-St.Louis where he felt more comfortable and established himself on social and academic fronts. Most importantly, he shares his ‘lessons learned’ on how to advocate for himself regarding institutional accommodations.

His story is a critically important lesson for all persons transitioning to college life: If the fit isn’t right, move to another higher-education institution that fits better.

A good accompaniment to the Autism Goes to College site comes from the Autistic Self-Advocacy Network (ASAN).

Navigating College, A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults (2013) describes many aspects of higher education engaged by persons on the autism spectrum.

With a forward written by Ari Ne’eman (appointed to the National Disability Council by President Barack Obama and founder of ASAN), autistic authors engage such topics as accommodations, self-advocacy with professors, mental health, residence life, and social life.

https://bit.ly/navcollege

Above all......PERSIST!

The recipe for success in higher education at every level is persistence. Success in this context is 10% inspiration and 90% perspiration. This is true of all human endeavors journeyed upon by all persons, neurotypical and neuroatypical alike.

For students on the spectrum, allies from all walks of life will emerge as college educations advance. Enter higher education with social supports, a loving community, a sharp mind, and a dry wit, and add to these qualities as you, the student with autism, enrich the communities of others in turn.

As a last request from the parent of a college-bound teenager with autism directly to autistic students who are reading this, please find a way to document your journey and share it with other autistics headed to institutions of higher education all over the world.

The journeys I’ve highlighted here are not the full story on autism and college engagement. Your narrative, blog, podcast, or video clips are part of the tapestry future college-bound autistics need to put themselves forward.

References:

1. Autism Goes to College — https://www.autismgoestocollege.org/

2. Autistic Self-Advocacy Network [ASAN] (2013). Navigating college: A handbook on self-advocacy written for autistic students from autistic students. Washington, DC. https://autisticadvocacy.org/resources/books/navigating-college/

3. Baczewski, L., Pizzano, M., Kasari, C., & Sturm, A. (2022). Adjustment across the first college year: A matched comparison of Autistic, Attention-Deficit/Hyperactivity Disorder, and neurotypical students. Autism in Adulthood, 4, 1, 12-21.

4. College Autism Network and CAN Autism-Specific College Support Programs — https://collegeautismnetwork.org and https://can.softr.app/about

5. Nachman, B.R., McDermott, C.T., & Cox, B.E. (2022). Brief report: Autism-specific college support programs: Differences across geography and institutional type. Journal of Autism and Developmental Disorders, 52 (2), 863-870.

6. Steinmetz, C. (2023, May 9th). Making change through community-based participatory research. https://bit.ly/psumakingchange

7. Sweeney, M. R., Teresa, B., Katie, Q., & Adam, H. (2018). Living with autism as a university student at Dublin City University: Developing an autism friendly university. Dublin, IR: Dublin City University. https://bit.ly/autismfriendlyreport

8. U.S. Department of Health and Human Services (2006, June). Your rights under Section 504 of the Rehabilitation Act. https://bit.ly/section504rights

Laurie A. Drapela, Ph.D. works as an Associate Professor of Criminal Justice at Washington State University Vancouver while raising a high school child with autism and spending time with her family. Dr. Drapela’s research areas include juvenile justice, therapeutic specialty court programs, and intersections of behavioral health, mental health, and criminal justice. She volunteers with autism advocacy organizations in the Vancouver community and has recently authored a book with two colleagues comparing autism and juvenile justice policy between Canada and the United States.

Creating More Equitable S paces Clear Learning Targets

By Aaron Blackwelder

This article is Part Two in a four-part series on Creating More Equitable Spaces. Part One, A Sense of Belonging for All Students can be found at:

https://www.spectrumlife.org/blog/creating-more-equitable-spaces

Equity starts with a teacher’s assessment practice. How a teacher assesses students can either challenge and motivate or diminish student learning and engagement. The first step to establishing more equitable assessment practices is to consider what students are learning in a lesson, unit, or course. When a teacher explicitly communicates the learning outcomes, students know what they are learning, thus allowing them to better navigate the course.

This article will share how to establish clear learning targets and how doing so can create more equitable learning environments for all students to learn and grow—including students with learning disabilities such as autism.

What are learning targets?

Learning targets are the outcomes students will be able to do by the end of a lesson, unit, or course. They are important for teachers because they help to ensure that students are learning what they are supposed to be learning. Clear learning targets also help students to stay focused and motivated, as they know what they are working towards.

There are a few key things to keep in mind when writing learning targets:

• They should be specific and measurable. This means that they should be clear about what students will be able to do, and how their success will be measured.

• They should be aligned with the curriculum. Learning targets should be based on the standards that students are expected to meet.

• They should be challenging but achievable. Learning targets should be set high enough to challenge students, but they should also be achievable with effort.

• They should be shared with students. Students should be aware of what they are expected to learn so that they can set their own goals and track their progress.

Here are some examples of clear learning targets:

• By the end of this lesson, students will be able to define the term “photosynthesis.”

• By the end of this unit, students will be able to solve a quadratic equation.

• By the end of this course, students will be able to write a persuasive essay.

Clear learning targets are an essential part of effective teaching. By taking the time to write clear and specific learning targets, teachers can help their students to learn more effectively.

How to

establish clear learning targets:

Establishing clear learning targets is an essential step in good lesson planning. First, a teacher needs to ask themselves, “What are the one or two things I want my students to learn?” It is important to keep it simple. The fewer the learning targets, the easier it is to teach and measure student learning.

Here are some tips that a teacher can follow to establish clear learning targets:

• Start with the end in mind. Before planning a lesson, take some time to think about what it is students will be able to do by the end of it. What knowledge, skills, or understanding will they gain?

• Make sure the learning targets are aligned with the standards students are expected to meet. The learning targets must be appropriate for the student’s age and ability.

• Make the learning targets specific and measurable. Learning targets should be specific to what students will be able to do, and how their success will be measured. For example, instead of saying “Students will learn about photosynthesis,” say “Students will be able to define ‘photosynthesis’ and explain its process.”

• Make the learning targets challenging and achievable. Learning targets should be set high enough to challenge students, but should also be achievable with effort. If the learning targets are too easy, students will not be challenged, and if they are too difficult, students will get discouraged.

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• Share the learning targets with students. Students should be aware of what they are expected to learn so that they can set their own goals and track their progress. Learning targets can be shared by writing them on the board, posting them on a website, or including them in handouts.

What impact do clear learning targets make?

When teachers establish clear learning targets, several positive things happen for students

• Students are more likely to be engaged in learning, as they know what they are working towards.

• Students are more likely to achieve their learning goals, as they have a clear understanding of what is expected of them.

• Students are more likely to retain the information they learn, as they are actively engaged in the learning process.

• Students are more likely to transfer their learning to new situations, as they have a deeper understanding of the concepts they are learning.

• Students are more likely to develop positive attitudes toward learning, as they see themselves as successful learners.

Overall, clear learning targets can help to create more equity in education. It ensures all students have the same opportunities to learn and succeed.

When teachers have clear learning targets, they can plan their lessons accordingly and provide students with the unique and individual support students need to be successful. Ensuring that all students have the same learning opportunities and clear learning targets can help close the achievement gap and create spaces where all students can succeed.

How can clear learning targets support students with autism?

Establishing clear learning targets supports the learning of all learners. However, for students with learning disabilities, such as autism, clear learning targets offers opportunities to thrive and succeed.

Here are some ways clear learning targets help support autistic students:

• Increased engagement and motivation. When students know what they are expected to learn, they are more likely to be engaged in the learning process. This is especially true for students with autism, who may have difficulty understanding abstract concepts or following instructions. Clear learning targets can help students focus their attention and stay on task.

• Improved self-regulation. Students with autism often struggle with self-regulation, which can make it difficult for them to stay on task and complete assignments. Clear learning targets can help students develop self-monitoring skills by providing them with a way to track their progress and identify areas where they need additional support.

• Reduced anxiety and stress. When students are unsure of what is expected of them, they may feel anxious or stressed. Clear learning targets can help reduce anxiety and stress by providing students with a sense of predictability and control. This can make it easier for them to focus on the learning process and achieve their goals.

• Enhanced communication skills. Students with autism often have difficulty communicating their thoughts and feelings. Clear learning targets can help students develop communication skills by providing them with a way to share their understanding of the material. This can help students feel more confident and engaged in the learning process.

• Improved academic achievement. Clear learning targets can help students with autism achieve academic success by providing them with a clear roadmap. When students know what they are expected to learn and how they will be assessed, they are likelier to put in the effort to achieve their goals.

Overall, clear learning targets can be a valuable tool for supporting autistic students. By providing students with a clear understanding of the material and how they will be assessed, clear learning targets can help students increase their engagement, motivation, self-regulation, communication skills, and academic achievement.

Aaron Blackwelder is a Digital Learning Coach in the Vancouver Public School District and coaches high school golf in Southwest Washington. He is the co-founder of Teachers Going Gradeless, and an educational contributor to Spectrum Life Magazine. Aaron has been a Washington State English Teachers Fellow, was nominated for Washington State Teacher of the Year in 2019, and is a five-time golf coach of the year. Aaron is a husband and father of two boys on the autism spectrum, who inspire him to become the teacher who meets the needs of all students. Visit www.Teachersgoinggradeless.com

Photo courtesy of Mary Rebekah Moore Photography

“Autism can’t define me, I define autism.”

Dr. Kerry MAgro

Building Confidence In and Outside of the Gym

You can do difficult things!

By Ryan Lockard, CSCS, CSPS

Specialty Athletic Training was founded in June 2012 to provide access to professional fitness services to the disability community. Our programming is relationship-driven with the purpose of creating a fun and inclusive environment where everyone feels safe and welcomed.

Lewis & Clark College is home to our Portland, Oregon location and is where we first began building our Specialty Athletic Training community. I played football at L&C during my college years and was part of the coaching staff at the time. I spoke with the athletic director to discuss my vision and he was very supportive and encouraging. We continue to train at L&C and it has been our home base throughout all our years.

As word spread about what we were doing, interest in our program grew outside of the SW Portland community. We soon had people traveling from Vancouver, Washington

and other communities in the Portland Metro area to access services. This led to us expanding to Vancouver in 2016, where we now have our own location in the Orchards area. We have since expanded to serve the Central Oregon community by training out of Boss Sports Performance, as well as our most recent expansion to Eugene, Oregon at CrossFit Evviva.

This piece was written to encourage and support people who want to improve their physical health but are anxious about athletic training and wonder whether a gym is right for them.

What process do you use to help beginning or nervous gym-goers feel confident working out?

The first thing that we do is have a phone conversation to start the relationship-building process. We discuss not only goals and struggles, but your general interests as well. Our goal is to have each person feel comfortable with us before they even step foot in one of our locations.

Getting a tour of the facility is the next step of our process. If you are a new gym-goer or nervous about starting, try and get a tour during a less busy time in the gym. During your initial phone call, ask when the busiest times are for the gym, and avoid those when scheduling your tour.

Hiring a coach that you trust and enjoy working with is vital to your progress. They will be able to provide you with a structured program to reach your goals, as well as hold you accountable. It can be difficult to get started, and having a personal coach will help you stay consistent, especially during the tough times in your fitness journey.

What benefits of exercise carry over outside of the gym that improve confidence?

The best part of my job is hearing stories about how fitness has changed a client’s self-confidence outside of the gym. With a consistent fitness program, you will see results in the gym. Most importantly, you will see an increase in your quality of life. Being able to do things that you were unable to, or thought you were unable to do, before you began training will become the norm.

My favorite story was hearing a mom’s story about her son getting on and off the school bus independently for the first time after he began training with us. This is the perfect example of how gaining strength and confidence carries over to daily life. Her son began seeing improvements in other areas of his daily life as well. The confidence he gained while training was the start of a positive snowball effect in this individual and family’s life.

What about wardrobe? What do you wear to feel confident but not hinder your workout?

I recommend wearing what you feel comfortable in, that also coincides with the rules of the gym that you’re going to. Many gyms will require closed-toe shoes for safety, not allow denim (it can be hard on the equipment), and require you to wear clothing at all times. The last one seems obvious, but it can be common for males to lift shirtless at certain gyms or studios (mainly CrossFit boxes).

We understand that our clients may have sensory needs or other accommodations when it comes to clothing. Although we prefer them to wear closed-toe shoes, it is not required at our locations, and we make exercise selection modifications as necessary. You will find me working out in sweatpants, a t-shirt, a hoodie, and a pair of running shoes.

Goal-setting tips? Any particular apps you like for recordkeeping or tracking progress?

For all of our 1:1 clients, we use an app called Trainerize. It allows us to track progress and has a great positive reinforcement system built in. If you are looking to track nutrition, I highly suggest MyFitnessPal. It is free and allows for easy tracking and customization as needed to meet your goals.

How do you recommend avoiding the comparison trap so people can still feel good while they’re striving for improved health?

Our society deeply struggles with the comparison trap, so don’t feel alone! Everyone posts their “perfect” lives and bodies on social media, but tend to leave out their struggles. I’m a huge fan of the fitness influencers that show their

bodies in not flattering poses and lighting, highlighting that they are not “perfect”.

Consistency is key. Remember that everyone struggles with daily motivation, but it is important for you to show up.

Your fitness journey is exactly that, YOUR fitness journey. Everyone starts somewhere and that first step can be the most difficult. You CAN do difficult things and getting in a fitness routine becomes one of the most positive addictions that you will experience.

I also encourage people not to connect their success based on the number on the scale. That number can become stagnant but doesn’t mean that you’re not seeing positive results. Pay close attention to how your clothes are fitting, your daily mood, and your energy levels.

Another motivating factor is that your health also directly impacts your loved ones’ lives. According to the Centers for Disease Control and Prevention (CDC), over 40% of American adults are obese and individuals with disabilities are 57% more likely to be obese compared to their peers. The numbers posted are from the year 2020 (pre-pandemic) and it is safe to assume that the numbers have skyrocketed even more after our sedentary lifestyles during the lockdowns. Obesity puts you at a predisposed risk of stroke, type 2 diabetes, and heart disease; the three leading causes of preventable premature death.

Any time that I am lacking the motivation to exercise, I think about my wife (Mary) and my two boys (Rory and Tatum). I want to do everything in my power to increase their quality of life. My staying active and healthy plays a huge role in that.

Ryan Lockard is the Founder and CEO of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon that specializes in fitness programs for children and adults with disabilities. He is a Certified Strength and Conditioning Specialist (NCSA), Certified Special Populations Specialist (NSCA), and currently serves on the board of directors for the Autism Society of America. He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.

Photos courtesy of Mary Rebekah Moore Photography

#AskingAutistics The Myth that “Real Autistics Can’t Camouflage”

By Lyric Rivera, NeuroDivergent Rebel

Content Warning: Suicide and discussion of Autistic Mental Health Crisis

Growing up, not knowing I was Autistic, I learned to camouflage not just my weaknesses and struggles but anything that made me stand out, even the things that made me happy, my joy, excitement, and passions.

After years of having my needs dismissed by people who assumed my mind was just like theirs, I stopped speaking up for what I needed and retreated inwardly. I kept my problems and worries to myself and everyone at a safe enough distance, not allowing anyone into my world.

Being able to camouflage and blend in can help avoid abuse and bullying. It may also be the only way that some Autistic and other NeuroDivergent people can survive in a world that is not designed for, and is often dangerous to us.

Many of us learn to blend in as a survival skill. We’re not trying to trick anyone; we are trying to stay alive. At the same time, many of us are losing our lives.

Actual comment left on one of my social media posts: “Real autistics can’t hide their autistic traits - if you can camouflage, you are not really autistic.”

I wish I were surprised by this nonsense, but almost nothing surprises me these days.

The thing a lot of people don’t understand about Autism is how much of the Autistic experience can be invisible for a multitude of reasons.

I didn’t find out I was Autistic until I was already an adult because much of my Autistic experience is internalized and, therefore, invisible.

I have spent more time on earth not knowing my Autistic brain than understanding it. I grew up learning to emulate non-Autistic people, using them as the “baseline model” of human success (as many people do).

NeuroDiversity is a way to talk about the often-invisible brain diversities that impact how we communicate, process information, and interact with people and the world around us.

Because this world can be hostile and unkind to those who are noticeably different, many Autistic and other NeuroDivergent people learn to camouflage their NeuroDivergent traits to blend in with those around them.

My Autism diagnosis came at the low point of a mental health crisis. After years of desperately comparing myself to, and holding myself to the expectations of non-Autistic people around me, thinking I was one of them (but an inferior, defective model), my sense of self-worth was at an all-time low.

I had been giving my best at work, but my NeuroDivergent weaknesses kept showing through and coming up as negative marks on my performance reviews.

My best was all I had, but my employer kept telling me that it wasn’t enough and that they expected even more from me, but I didn’t know how to do or be what they wanted me to be.

My ability to camouflage my weaknesses was waning as my mental and physical health began to fail.

Despite my visibly deteriorating health (dramatic weight loss and frequent callouts for sick days), I was expected to perform at the same level I had been performing at when I was first hired and not completely ill from burnout.

The ability to camouflage came at a high cost, destroying my physical and mental health. Additionally, it isolated me by preventing people from getting to know “the real me” since I was pouring my energy into presenting the most “socially acceptable” version of myself to the world.

Looking around me at the life I had constructed because I thought it was what was expected. I felt trapped and hopeless,

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#Asking Autistics, continued from page 46

realizing that I was on track for a life I now knew was not sustainable and that I had lost almost all desire to live.

Being diagnosed Autistic at 29 was a wake-up call that saved my life, stopping the darkness that had taken over me. It was like a crack over the head, resetting my worldview and priorities.

The diagnosis helped me to realize the life and path I had been on up to that point was not sustainable, and changes would have to happen if I were going to continue this life on earth.

If we pretend Autistic camouflaging isn’t real, we ignore the VERY REAL traumas and struggles frequently associated with hiding one’s Autistic traits.

Additionally, these assumptions that “all autism is visible” also ignore all of the hard work and coping skills that an Autistic person has worked to acquire throughout their lives so that they could become the person they are today.

This is why I typed out recently on a Twitter post to ask my community their thoughts on this comment that was SO WRONG I was at a loss of words for a few weeks:

I ask: One of the worst Autism myths I’ve seen online is: “Real autistics can’t hide their autistic traits - if you can camouflage, you are not really autistic” - this one’s so wrong I don’t know where to start.

#ActuallyAutistic #AskingAutistics: What would you say about this one?

Responses from #ActuallyAutistic Twitter:

(Editor’s note: Out of respect to #ActuallyAutistic contributors and Twitter styling, tweets have been shared as submitted and are a sampling of many responses. To search #ActuallyAutistic on Twitter, visit: https://bit.ly/askingautisticstwitter)

Self Dx Autie (Tiff) – I’d say...nothing, the people who say that are clearly so misinformed that the chances of them engaging in good faith would be slim. Would rather preserve spoons for those who would engage in conversation in good faith.

Anonymous – I find this to be an absolute lie because I had to mask in order to survive for as long as i can remember and I became so “good” at it that most people don’t think I’m autistic.

Preethi Srinivasan, @omahazeeyaa – As someone who’s lived their whole life masking, this feels really hurtful :(

Lucas – “if you can camouflage, you are not really autistic” Well, if anyone says something like this, they’re really missing the obvious fact that if I have the need to mask something, then it must be autistic traits, right? Otherwise, what would I be masking then?

Angel Kershaw, @angelkershawartist – I’ve masked all my life out of abject fear of being bullied or excluded. It’s the “you’re a bit different, so we’ll single you out” and “you’re too normal, you can’t be Autistic” dilemma. Lots have said “oh we never knew”. We’re good at hiding in plain sight #ActuallyAutistic

Joely Williams, a multi world and nationally awarded, international motivational speaker and autistic autism author, from My Autistic Wings Autism advocacy. MyAutisticWings.co.uk– I find this hard cus I do agree with you Lyric - it’s a harmful generalizing statement-yet personally, I was DX at 2 & couldn’t mask cus of my Autism cus I couldn’t process the abuse gaslighting to change myself to camouflage/ mask sub/consciously. Autism is still so misunderstood.

Amaranthe, @IMissCarrie, chai-elemental.ghost.io – That’s so entirely wrong it physically hurts. A huge chunk of Autistic people can and do camouflage (although not all of us).

Cary Narveson – Masking drained me so much but same time I’m still unlearning it so I can stim and be more myself before I was forced to survive.

Fallon Binns, @crippedcommie – They only think we can’t be autistic BECAUSE we mask so well.

To join in the conversation, here is the link to the original tweet: https://twitter.com/NeuroRebel/status/1630352284679798785

This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Rivera. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics

Lyric Rivera is an autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other, and fosters collective understanding of the Autistic experience. www.neurodivergentrebel.com

Do You Mask?

Exploring the Many Faces of Masking

By Dr. Anson Service, Psy.D., LMHC aka Neurodivergent Doctor

Do you like Halloween? No, I am not talking about the movie with Mike Myers. Fun fact: There is a clinician named Mike Myers in Vancouver, Washington who is one of our therapists at my psychological office... I‘m not kidding. Wow, only three sentences into this article and I have already gone off track. Let’s try this again.

Halloween began with the customs of the Celtic-speaking countries. Under the light of large bonfires, they wore facemasks, makeup, and costumes with the idea that this would protect them from bad spirits and ghosts on All Hallows Eve. We wear a different type of mask today, but for some of the same reasons, metaphorically.

Masking, also known as camouflaging or compensating, is to change the way we appear, physically and behaviorally, and will look different for different people. If you mask, you may do it to fit in, to conform to the expectations of others, to draw attention to yourself, or to avoid drawing attention to yourself. Sometimes masking can be used to conceal a negative emotion, like anxiety, irritability, or anger, or it may conceal excitement.

Masking can include making eye contact, copying the gestures of other people or from movies, learning how to make facial expressions that are socially appropriate for the situation such as “fake smiling”, relying on scripted or memorized phrases, or having conversation topics already prepared for an interaction.

Unfortunately for many people, masking also includes trying to suppress stimming, secretly suffering through sensory situations that you are hypersensitive to, and even changing the way we think about people and situations. But overall, masking is really about social survival, emotional survival, and physical survival

Even though the concept of masking is ancient, the term masking is only about 50 years old and is thought to be first introduced by Paul Eckman and Wallace Friesen to describe the act of concealing disgust.

Yes, you read that correctly. It is a label that describes the act of hiding disgust. Wow! Think about that in your life. Maybe disgust isn’t the right word for you, but the word disgust is a powerful word that evokes strong feelings of discomfort. This is why many of us mask. To avoid discomfort.

Hull and colleagues posited the idea that there are three stages to masking: Motivation, Masking, and Consequences.

The first stage, Motivation, is described as recognizing when it might be important to appear more neurotypical, more... normal. It could include trying to make a certain first impression on a date or in a social situation or to keep a job.

The second stage of masking is.... Masking, which might include matching other people’s behaviors or tone of voice, accent, looking relaxed, appearing calm, cool, and collected on the outside but on the inside they may be freaking out, and they may closely observe others to quickly learn what is and is not acceptable behavior.

The third stage is Consequences. I have had far too many consequences as a result of my masking behavior, especially as a teen, where I watched the behavior of others, tried to imitate them in my own way, but in true AuDHD fashion, sometimes went a little too far and did not execute the behavior as others expected. This sometimes resulted in people being upset with me, disappointed, or worst of all, they sometimes didn’t say anything, which left me feeling like something was not quite right.

Continued on page 50

Because I could not figure out what these people were meaning, I concluded that I was the one who was not quite right

Learning To Mask

Humans learn to mask early on. As infants, we quickly learn that certain behaviors, such as crying, cooing, and making faces get us what we want, even if we don’t know why that behavior gets us that thing. It just does.

If a young child farts, everybody laughs and the child looks around at the adults and discovers that their flatulent relief created a desirable outcome. However, a 12 to 30-year-old person will get a different reaction from others.

As children, we learn how to dress, do our hair, and bathe, even when we don’t want to. Yet, for some, even these acts of self-care can be a form of masking.

But are we just faking it? I believe not. When we mask, I believe we are still ourselves, but we are bending our behavior to fit a situation. We all behave differently in different situations to have the most favorable outcome, or for some, the least painful outcome.

We act differently around our friends when out on a Friday night than we do when visiting Grandma at Easter. Both versions of your behavior are still you. Still, we all usually try to behave appropriate to the situation, i.e., we do not fart over the age of 12 around certain people.

I believe masking can become more confusing when a person may genuinely be having a good time while masking. But they must follow through with additional insights to understand the role of masking in their lives.

Do they find themselves completely exhausted afterward (which can be one of the consequences of masking)? Do health consequences arise from chronic masking? Can their masking be considered impulsive and dangerous?

Did it lead to risky behaviors, such as health, sexual, or financial predicaments? Were they taken advantage of by “friends” who may have manipulated them? These things tend to be more difficult to navigate through when a person also has a fun time while masking.

Illustrated by Emily @21andsensory

Sometimes our masking includes changing the way we think about people and situations. Sometimes we have our own expectations that cause us to mask. Sometimes, sadly, we are not happy with ourselves and we can even mask for ourselves.

We might be too caught up in the idea of what we need to do, who we need to be, how we need to talk, what kind of house we need to live in, etc., just to live up to our own expectations. We can’t always make masking solely about trying to fit in with others because of the expectations of others. We must manage our own expectations as well.

How Do You Mask?

I usually like to blend in and hide in public. I prefer sunglasses because of light sensitivity, and it helps me feel like I am able to hide my eyes so people don’t look me in the eyes. Sometimes smiling is physically and mentally exhausting. I often naturally have what is called “flat affect”, a neutral facial expression. Sometimes my smile is real and authentic, and sometimes it is just masking.

For some, masking is spending more than they can afford or flaunting money or possessions because they want others to think a certain way about them. They might feel safer if they feel like they can portray themselves as something else, such as powerful, angry, mean, meek, or shy.

They may act less intelligent than others to avoid standing out. They may act fearful and insecure because in the past that has resulted in them getting out of certain obligations, such as public speaking.

People may mask by name-dropping or joking too much or at the wrong time. They may use their perceived power or authority, possibly religious or business, over others to bully others because they’re afraid.

While these are things most people do to one degree or another, I believe the largest difference between neurotypical masking and autistic masking is that autistic masking has a much greater risk of negative effects. Additionally, they may have less control over it.

Many autistic individuals I speak with around the world admit that it is simply exhausting, but they do it daily, mostly around others. Unfortunately, autism is not well understood by the general public, and sometimes autistic people mask to conceal their autism.

This world is still not completely safe for autistic individuals. Some feel, myself included, if they do not mask, they will end up getting hurt in one way or another. Masking might help someone avoid being bullied, harassed, or something else that hurts autistic people and causes pain and suffering.

What are the Concerns with Masking?

One of the most serious effects of masking, in my opinion, is the risk of feeling fraudulent. Some feel as if they are betraying who they really are. Cognitive dissonance (which can happen with masking) is when we are feeling mental discomfort by having two or more conflicting attitudes, beliefs, or values.

Many have lived their entire lives hiding autistic traits, without support, and without the understanding that they deserved all of these years. Masking is also correlated with increased stress, anxiety, and exhaustion levels compared with those who do not mask as often, according to a 2016 and 2019 study.

Additionally, when someone is constantly under pressure, feeling stress and anxiety, depression often ensues. Another study found that more masking was correlated with higher rates of depression and feeling unaccepted by their peers.

Autistic burnout can result from constant masking. In fact, one study of a group of students suggested that a lifetime of masking has been correlated with higher rates of suicidal ideation. While this is just one group, it is worth taking note of and must be taken seriously.

Are There Benefits to Masking?

Many autistic individuals have built a life around masking, and some versions of masking can be beneficial. I am genuinely a personable human, but it is not necessarily easy for me. I like most people and the ADHD part of me likes being around some people. But being personable was a learned skillset.

Some autistic people succeed in their professional lives because of masking. However, many have entered into relationships using their masked version of themselves and are afraid that if they unmask completely, they may not be able to keep their partner, friendships, or job.

One person I spoke with said that when she started her new job, she decided the type of person she needed to act like to get ahead in that company, and it worked. As a result, she has been highly successful, whereas she previously struggled to hold any job for very long. She cited her autistic ability to mask as the reason for her success.

But I also believe the most powerful reason people tend to mask is because masking may help millions of neurodivergent people feel like they belong and fit in. Good or bad... that is just the way it is, and having a sense of belonging is one of the most powerful motivators we know of.

If you have not seen my video on masking found on YouTube (search Neurodivergent Doctor), please do. In that video,

Continued on page 52

1

I explain this in greater detail and offer insight into my own life. I have failed to mask effectively in many situations.

What happens when a person fails? They are told they aren’t trying hard enough or are failing on purpose. They are often labeled as lazy, a bad person, stupid, disordered, or unworthy. I have felt it, and so many others have too.

Someday I hope that we all live in a world where we feel okay being the most comfortable version of ourselves. We mask because we don’t feel okay honoring our own autism. If we can feel like we are unconditionally okay to accommodate our own needs and ways, meaning our presence and existence matters, and we have a right to be here, saying what we say, doing what we do, stims and all, maybe we can drop the harmful masks bit by bit.

We have been cut down over a lifetime and parts of us have been cut out or added in to live up to the expectations of others and the world, and I hope that need decreases for you beginning today.

Give yourself love, compassion, and permission, but understand most people cannot stop masking all at once and some masking should be kept. Like everything, it is a process, and everyone is different.

Here are a few things that I feel have helped me with masking.

1. First, I think back to my childhood and I write down the ways in which I masked as a child. When did I first notice myself masking and what was the circumstance? Why did I mask at that time? What was the outcome? This exercise helps me bring perspective to my life and how I understand my own history. It can help me be more compassionate for my childhood self and can foster self-forgiveness and self-acceptance.

2. Ask yourself who put the idea in your head that you can’t be the most comfortable version of yourself? What is the source? Is it a trusted person? Challenge it in your mind.

3. I may ask a trusted friend to help me be more comfortable. I can explain what masking is and give a specific example of something I have found myself doing in their presence and why I want to stop that behavior and be more ... me. This might be a little tricky, and it is not an opportunity for shaming, but rather an opportunity to see if they are supportive in a change.

4. Finding a therapist to help through this process can be beneficial. It is vital we find therapists that really get autism. They must understand it better than what they learned in school or from a few online sources or experiences. I am still learning something new about autism every day, even after more than 20,000 hours of experience in this field and over a thousand autism assessments. I feel like we are just beginning to get it. Maybe you can find an autistic therapist. There are many out there.

5. Celebrate being you. Oscar Wilde wrote, “Be yourself; everyone else is already taken.” Everyone is different but you may be especially different, and that is great.

The way you communicate is okay, whether it is by an electronic device, your vocal chords, signing, or other forms of self-expression. All of it has a role in our world, and it is an important role.

You may have ideas, interests, and behaviors that are incredible, or they may be things you simply find internally satisfying, even if nobody else really sees them. And that is okay. It is all part of a giant interconnectedness where nothing goes on without having an effect on everything else.

Make a list of the way you do things that you find interesting and you may find that asking someone else what they find interesting about you provides some additional insights as well.

6. Find your people. It is important that you find others whom you can find camaraderie with. Find others who have had similar experiences. There are online groups available and you may be lucky enough to find a local support group for autistic individuals.

I love the saying, “Birds of a feather flock together”. To me, this means neurodivergent people tend to attract other neurodivergent people into their lives.

7. Finally, keep writing. Write down the ways in which you have discovered you mask, why you do it, if it serves a purpose, and if you should continue to mask in those circumstances. You cannot address what you cannot identify.

I hope this article helps you in your neurodiverse universe.

Resources and References:

1. Neurodivergent Doctor at YouTube: https://youtu.be/7qV6veLx8BA

2. Dr. Anson Service: Psych Doctor helps you spot masking and what to do about it: https://youtu.be/7qV6veLx8BA

3. Study citations and reference material for this article are available at: https://www.spectrumlife.org/blog/do-you-mask

Dr. Anson Service is a licensed mental health counselor, and part of a team that assesses individuals for autism, ADHD, and more at Adventure Psychological Services. Dr. Service has written for various magazines and authored several books and is happy to further educate others on autism and other areas of neurodiversity. He and his wife have raised three young men and are now raising their dog named Luna. www.NeurodivergentDoctor.com

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Autism and a Changing Sensory System As needs change over time, Be Kind.

By Judy Endow, MSW, LCSW

One of the challenges of autism is sensory system difference. These differences are so prevalent that they are part of the diagnostic criteria for Autism (American Psychiatric Association, 2013).

This difference comes into play because an autistic neurology typically doesn’t automatically regulate sensory information. This can happen in a variety of ways and accounts for the sensory difference variation we see among autistic people.

Sensory information from the world around us is taken in, processed, stored, and retrieved by all human beings. In those of us with autism, there can be differences in any, some, or all of these areas. This often translates to mean our sensory systems are “on edge” pretty much all the time (Endow, 2013, 2011, 2009, 2006).

To live more comfortably in a world that is not set up with our sensory needs in mind, we must learn to bring intentional regulation to our sensory system because our body does not do that for us automatically.

For youngsters, this means an Occupational Therapy (OT) Sensory Evaluation is often done with the results of recommendations for a sensory diet. What is on an individual’s sensory diet plan are those activities, if engaged in, that will help to manually regulate that person’s sensory system. Most older autistic adults have not ever had a formal sensory evaluation, but over time have figured out what sensory regulation modalities serve them best.

Something about autistic sensory difference that I do not see addressed in the literature is the fact that sensory system needs change over time. This is important for many reasons. Here are a few to keep in mind:

1. When youngsters get sensory evaluations that result in sensory diet recommendations that are actively utilized in daily life, they become better regulated This results in more engagement, increased learning, and a happier child. However, over time, implementing the very same sensory regulating strategies doesn’t keep on delivering the same results. This is because the sensory system needs change over time (Endow, 2011).

For example, of the seven items on Madison’s sensory diet in second grade, only two of those items serve her needs in third grade. Because five of the sensory regulation choices no longer worked for Madison, she didn’t want to engage in those activities. However, she didn’t have the words or the communication ability to explain why she would push the “no” button on her talker.

When I went in to consult, the staff expressed frustration because Madison was clearly dysregulated and yet, she refused to do her sensory diet, pushing “no” on her talker when offered choices.

Once the staff understood that Madison’s sensory needs had changed, rather than being stuck blaming her for her lack of cooperation, they got an updated sensory evaluation.

With the new sensory regulation strategies matched to her changing sensory system, Madison became more regulated and once again began making academic progress.

2. It is important for autistic adults to be aware of the fact that their sensory needs will likely change over time. When you think of it, it makes sense because all human beings experience this. When you are autistic and have a very sensitive system that does not often regulate automatically, you need to be aware of this possibility and watch for the changes.

For example, Justin (age 52) was in the habit of taking two half-hour daily walks, keeping his TV volume level at nine,

and having three hours each evening with no auditory input. This plan served Justin well for almost three years. By age 55 he found that he had to increase the TV volume to 11 in order to hear it clearly and only needed one hour each evening with no auditory input. He continued taking two half-hour walks each day.

Then, at age 56, taking walks became troublesome to Justin because his fluidity in movement had become more problematic. After trying several strategies, Justin discovered that going back to three hours each evening with no auditory input along with listening to a music track of nature sounds that had a definite beat, allowed him to sync his walking to the beat. Thus, he was able to continue his two half-hour walks each day without experiencing the movement glitches.

3. Regardless of age, all autistics need to be kind to themselves when their sensory system changes. It isn’t easy because sensory differences, whether overload, not enough input, distorted input, or a processing, storing or retrieving difference – all of it winds up affecting the way we behave.

I haven’t yet met an autistic that hasn’t, at some point in their life, been blamed for bad behavior. We can see behavior. We can’t always see what is causing the behavior.

Whenever someone has a history of being blamed for bad behavior, they learn to blame themselves whenever their behavior changes – even when the behavior change is a direct result of sensory system difficulties.

When we see the behavior before we recognize the sensory system change, we cannot connect the cause and effect dots. For many of us, the learned pattern is to blame ourselves for our bad behavior. Anytime we attribute character flaw or blame to behavior, we get stuck in problem-solving.

In the above example, I started seeing Justin because he was having problems at work. He worked in an office and had started throwing office supplies. At first, he threw paper clips across his desk, then pens, and finally, when he threw a coffee cup that broke something, his job coach called me in. Justin’s job was on the line.

It took some time, but in the end, we all learned that Justin’s throwing was helping his movement stay fluid, and the nature music soundtrack helped his movement difficulties both at work and during his daily walks at home.

If the change in Justin’s sensory system with the resulting change in sensory diet hadn’t been discovered, the outcome could have been very different. Justin could have been fired from his job and his life would have become smaller without work.

In addition, he would have eventually needed to cut out going for walks as that movement became less fluid. Clearly, the movement support needed to be in place.

So, whether you are working with an autistic or are an autistic, please know that sensory system needs change over time. Often, your first clue that this has happened will be seen by a change in behavior. Whenever behavior changes, the number one rule I have is to BE KIND

When people are unkind to autistics, they tend to assign negative intentionally to the autistic for the behavior and then blame the autistic.

When autistics are unkind to themselves, they tend to blame themselves, assign character flaws (which are permanent and unchangeable) and over time become depressed over something that is nothing more than a symptom of their dysregulated sensory system.

Whenever you are unkind in response to behavior – either to an autistic or to yourself (if you are the autistic) – you don’t do anyone any favors.

Unkindness, blaming, assigned, or taken on character flaws all lead to getting stuck in solving problem situations. Sensory system needs change over time. Know this; count on this.

Your first clue will likely be something in the behavior arena. When behavior happens, BE KIND. Whether the behavior is sensory-related or not, it is most expedient to interface our best selves with solutions and positive regard for fellow human beings rather than being defeated by our own unkindness.

References:

1. American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Washington, DC: Author.

2. Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.

3. Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.

4. Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.

5. Endow, J. (2011). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.

This article was originally published for Ollibean and also appears on Judy Endow’s blog, Aspects of Autism Translated at www.judyendow.com.

Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving can be purchased at www.judyendow.com.