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a NOTE TO START THE SCHOOL YEAR
FEATURED SECTIONS ADVOCACY
Caetextia: The Topsy-Turvy World of Autism Stories from the Spectrum: Alex S. Allen. Autism and Meaningful Employment Transition programs and first jobs.
HEALTH + WELLNESS
It Takes A Village Local autism conference brings a community together.
Ask the Personal Trainer Ryan Lockard answers questions about Health and Wellness.
Ask Spectrum Life Questions focus on suicide support and help at Halloween.
Sucking It Up to Pass as Non-Autistic All people should have access to a meaningful life.
Gaming Across the Generations Board Games, Card Games, Video Games, Oh My! Instruments Ballet Academy The art of dance transcends all ages and abilities.
Dogs for Better Lives Autism Assistance Dogs help local families.
Spectrum Life Resource Directory Spectrum Life helps you find autism-friendly service providers.
Upcoming Autism Empowerment Events Support Groups, Social Clubs and Special Events.
Autism and Psychiatric Diagnoses Does your clinician have experience with autistic neurology?
A Note to Start the School Year A positive way for students and teachers to connect. My Child is Being Picked On – What Should I Do? A parent’s guide to bullying from a legal lens.
FROM THE PUBLISHER
m a g a z i n e
FALL 2018 | VOLUME 7, ISSUE 3 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer
Welcome to the Fall 2018 issue of Spectrum Life Magazine! At the time I write this, my husband and I are looking forward to our sons starting school. We’ve greatly enjoyed family time during the summer but there is something about the back-to-school routine that brings our neurodiverse family a sense of hope, stability, security and improved productivity. To help you and the students in your life get off to a positive start, our cover story this issue features insight from a high school teacher and autism support group leader with two teenage sons on the spectrum. See A Note to Start the School Year on page 28. Each issue we highlight at least one group or organization that serves the autism community in a unique and positive way. This time we chose two: Instruments Ballet Academy and Dogs for Better Lives. We also interviewed Beth Hammer from Washington Autism Alliance and Advocacy who coordinated the It Takes A Village autism conference held earlier this summer. When curating articles for Spectrum Life Magazine and our website, we try to offer a combination of educational, inspirational and meaningful content. Often the topics covered are about serious and timely issues like My Child is Being Picked On, What Should I Do? (page 30), Autism and Meaningful Employment (page 10), or suicidal ideation: Ask Spectrum Life (page 14). One thing I respect about our contributing writers who are autistic is that they willingly make themselves vulnerable sharing of themselves in order to help others. A special thanks this issue goes out to new contributor, Alex S. Allen and longtime contributor, Judy Endow. I’d also like to extend a warm welcome to our newest Editorial Advisory Board Member, Laurie Drapela, Ph.D.
Editorial Advisory Board: Amy Donaldson, Ph.D., CCC-SLP Laurie Drapela, Ph.D John Krejcha Tara O’Gorman, MSW Heather Parrott Brian Tashima Mailing address: Autism Empowerment P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org firstname.lastname@example.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 the Autism and Asperger community. 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. © 2018 All rights reserved.
ON OUR COVER
On a lighter note, the Portland Retro Gaming Expo is coming to town October 19th - 21st. For gaming enthusiasts of all ages, check out Gaming Across the Generations.
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™
This issue’s cover photo ties into many featured stories, including A Note to Start the School Year by Aaron Blackwelder. See our cover story on page 28.
advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
IN THIS SECTION Caetextia: The Topsy-Turvy World of Autism........................................8 Autism and Meaningful Employment..................................................... 10
Free Resources... for Parents and Caregivers of Children with Autism from Seattle Children’s Autism Center
The world of autism spectrum disorders is constantly changing and we at Seattle Children’s Autism Center are eager to share with parents and caregivers the latest therapies, research, news and tips for families.
1. The Autism Blog
theautismblog.seattlechildrens.org We provide information that may be helpful for raising a child with autism. Posts are written by physicians, nurses, psychologists, and family resource staff who are knowledgeable about the diagnosis and the latest in treatments and therapies are primary contributors to the blog. Topics range from selecting a summer camp to sibling support to new research findings to our perspective on the latest news and information about autism.
2. Autism 101
Available in-person at Seattle Children’s or by teleconference Autism 101 is a 90-minute presentation providing information and support for parents and families of children recently diagnosed with an autism spectrum disorder (ASD). Topics include up-to-date, evidence-based information about ASD, behaviors associated with autism, autism prevalence, treatments available and resources for families.
3. Autism 200 Series
Available in-person at Seattle Children’s or by teleconference. Watch past lectures on our website. Autism 200 is a series of 90-minute classes for parents and caregivers of children with autism who wish to better understand autism spectrum disorder. Classes are taught by faculty from Seattle Children’s and the University of Washington and other community providers. Topics include transition to adulthood, early intervention and school support. Each class includes time for questions.
Learn more or register at seattlechildrens.org/autism or by calling 206-987-8080. For information related to setting up a teleconferencing site for the Autism 101 or 200 series in your community, contact James Mancini at email@example.com or 206-987-3481.
Caetextia: STORIES from the SPECTRUM Autism from an Autistic perspective
By Alex S. Allen The world is full of problems. From sorting out weekly plans to coordinating a date with someone you met at the supermarket to going to a convention for your favorite TV show, no matter who you are or what your interests and personality are, you’ve got problems. Dealing with life’s many problems comes with some unique challenges for those on the autism spectrum. Caetextia (from the Latin word caecus, meaning “blind” and contextus, meaning “context”) is a term coined by Joe Griffin and Ivan Tyrrell in 2007. As an autistic man in his twenties, I feel qualified to share how this abstract symptom can affect the daily lives of those on the spectrum. There is more than one way to approach a problem, and any given moment of any given day, chances are you are dealing with a handful at any given time. Most of these, your brain will happily take, sort, and file away neatly for you without you even noticing. At the supermarket and trying to find the best apples on the display? Browsing the web and parsing a news feed loaded with information? Cooking dinner and managing three appliances at once? These are all examples of tasks that primarily use what is called Bayesian, or top-down processing. These tasks are typically far more difficult and overwhelming for those of us on the spectrum. When approaching a problem, you can start at the top or the bottom. Starting at the top means seeing the final, whole picture and deducing what pieces and bits come together to form it. Starting at the bottom means taking all of the bits and pieces of information and constructing the big picture, like sorting the world into boxes you connect like Lego® bricks into your understanding of the world. Most of the time, top-down processing is less accurate but far faster and less strenuous on the brain. Bottom-up is far more accurate but slower and takes more conscious effort. What happens when a brain can’t utilize the shortcuts of top-down thinking? Well, you get autism. You get a brain that struggles to deal with the hundreds of rapid-fire cues in every face-toface social situation. You get a brain that gets overworked when dealing with the thousands of colors, noises, smells, and objects in a supermarket. You get a brain that lacks coordination, is overwhelmed easily, and seeks structure in its environment to reduce the number of processes it has to keep going at all times.
Reality has become louder. Every feeling, every experience, only has one channel to go through. Like a computer with a thousand browser tabs open, it slows down and maybe even overheats. An “autistic meltdown” is that person’s attempt to save themselves from a painful situation, not a grab at attention or to disrespect those around them. I still remember many a time I ran away from my parents in crowded malls or curled up into a ball in the middle of class because I was overwhelmed with the sensory experiences of the room. Of course, those around me did not understand my situation and their anger towards me in the moment only made the situation worse. Mood regulation too is affected, with every feeling faced by the autistic person so much bigger in their own mind even when others look to the situation to find them overreacting. Complex feelings can become messy and painful, often becoming a related symptom called alexithymia, where the ability to communicate and relate such feelings is just as muddled for the autistic person as trying to sort out the sounds in a crowded room. I once cried for a half an hour after a dance class in college because there was just too much going on emotionally for me to sort it out in a calmer way. At the same time, I also cried for half an hour upon discovering a dear friend had died, the emotions coming in a huge burst and dissipating far more quickly than grief normally allows. That’s not to say these emotional experiences were wrong or invalid, merely that they deviate so greatly from what is generally accepted as an emotional response to a situation, either way too emotional or not enough. Caetextia presents itself as the various strengths associated with autism as well. When all you can effectively do is bottom-up processing, you tend to get very good at it. And systemizing tasks, tasks that involve putting information into boxes and moving it around, is a prime example of bottom-up thinking many autistic people excel at. Examples include processing huge lists of information, reading dozens of articles on your favorite topics in one evening, even tackling a huge load of technical work with minimal breaks and extreme focus. It goes to show that a different mode of thinking isn’t a broken one, just one with a different set of needs. And when those needs are met, the autistic individual, or any neurodivergent person, can flourish in their environment just like anyone else. And even for those whose strengths are not in extreme systemizing tasks, those who instead can piece together art or music or games or stories, this Continued on next page
Caetextia, continued from page 8
unique mode of thinking is a strength to be nurtured and utilized, not written off as an incorrect way of doing things. Perhaps if we as a society were more willing to let there be more than one way of approaching the problems we all face, there wouldn’t be as many people struggling to cope with our society. The world is a topsy-turvy, chaotic and messy place. Navigating life’s struggles is a challenge for everyone, more so for those whose ability to make sense of the messy world is impaired. But as I’ve seen, through friends and family that have made changes in their behavior and lives to help me thrive, autism can be accounted for and adapted to. Because at the end of the day, most of disability is living in a world not built for your needs. There’s more than one way to tackle any problem, so maybe a little creativity could go a long way to a world that’s built for everyone, and I think everyone deserves a world that has a place for them.
Maybe that’s just because I think in boxes.
References: Caetextia: Understanding Context Blindness, https://www.caetextia.com/ Valerian Chambon, Chlöé Farrer, Elisabeth Pacherie, Pierre O. Jacquet, Marion Leboyer, Tiziana Zalla: Reduced sensitivity to social priors during action prediction in adults with autism spectrum disorders, Cognition, Volume 160, March 2017, Pages 17-26, ISSN 0010-0277, https://doi.org/10.1016/j.cognition.2016.12.005 Elizabeth Pellicano, David Burr: When the world becomes ‘too real’: a Bayesian explanation of autistic perception, Trends in Cognitive Sciences, Volume 16, Issue 10, October 2012, Pages 504-510, ISSN 1364-6613, https://doi.org/10.1016/j.tics.2012.08.009 Colin J. Palmer, Rebecca P. Lawson, Jakob Hohwy: Bayesian approaches to autism: Towards volatility, action, and behavior, Psychological Bulletin, Vol 143(5), May 2017, 521-542 Alex Allen is an autistic graduate of the University of Portland with a Bachelors in Psychology. He has been speaking on Autism and Autism Advocacy for years, presenting at university events and teaching local educators about the importance of acceptance and accommodation. He aspires to be a voice for neurodivergency and help make the world a little kinder and weirder every day.
Autism and Meaningful Employment
Transition Programs and First Jobs
By Judy Endow Autism is a developmental delay. This is particularly important when it comes to our youth who are at the age that typical youth graduate from high school and launch into their adult life. Typically developing youth are ready to go off to college or become employed in a full-time job upon high school graduation. For a few, this happens immediately upon high school graduation, but for most it takes another process where they work a job, attend higher education, and move away from the family home – either all at once or a little at a time so that over the next few years the high school graduates find their starting place in the big wide world. For our youth with autism, because of the developmental delay, that launching takes different trajectories. For some, attending high school as a special education student in the age 18 - 21-year-old category allows for further skill development and potential job placement. This is great if the job placement is looked at as a first job. We have all had our first jobs where we learned all about the world of work – about things such as being on time, arriving at work ready to engage in the job, managing our personal and social lives outside of work hours, how to fit in and have conversation with the various groups of people (co-workers versus the boss) along with all the other numerous learning experiences our first job afforded us. What I see happen all too often with our 18 - 21-year-old special education students who remain in high school and who are supported in their first job is that first job is thought of as the end of the story. What should be a first job experience often comes with an assumption that it is a lifelong job placement. This is wrong on ever so many levels. Just think back to your first job and consider how rewarding and fulfilling it would be if someone else decided that would be your job for life. Another problem our students with autism face is they are most often put into job programs along with other students with developmental delays without consideration of their cognitive ability. This matters. For developmental delays other than autism, cognitive ability (as measured by intelligence scores) is typically lower than average. Individuals with autism may have less than normal intelligence scores, but they are just as likely to have normal and even above normal intelligence. And yet, because of autism, they also have a significant developmental delay. Shredding paper, wiping down tables in fast food places, or other similar jobs might be a good first job, but will not likely be a satisfying lifelong job for someone of normal or above normal intelligence. Because our job programs for students with developmental delays are geared towards those who also have significantly decreased cognitive abilities, the programs are often poor matches for students with autism.
The developmental delay in autism also looks different across adulthood than it does for those with intellectual disability. People with autism get their diagnosis due to differences in social, sensory and communication areas. These delays in childhood often show improvement in individuals across the lifespan. This is different than intellectual disability where IQ is fixed and does not improve over the lifespan. Autism is a developmental delay. It is not stagnation! Youth and young adults with autism continue to make gains over the lifespan. To improve across the lifespan, the areas affected by autism – social, sensory and communication – are the areas that need to be addressed in transition programming for our youth with autism. All the employment and independent living skills need to be taught with this in mind. I co-authored the book The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment to address some of the areas our youth with autism need in order to be successful. References: Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting assnd Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing. This article was originally published on 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. Judy can be reached through her website, www.judyendow.com. www.spectrumsmagazine.org
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IN THIS SECTION Ask Spectrum Life.............................................................................................. 14 “Sucking It Up” To Pass as Non-Autistic................................................... 18
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Ask Spectrum Life Autism Resources for our Community
Each issue, Spectrum Life Editor and content curator, Karen Krejcha answers frequently asked questions about autism-related resources across the lifespan for our community.
Dear Spectrum Life: My son is an adult on the autism spectrum who struggles with depression and suicidal ideations. He has called suicide hotlines but tells me they don’t understand. I’m afraid of losing him. Do you have any autistic insight? ~ Desperate Mom
Dear Desperate Mom, I don’t know your son and the particulars of what he is going through but the fact that he has confided in you about his suicidal ideations and has tried to call suicide hotlines, suggests that he cares about you, is reaching out for help and is trying to find a way to live. That’s essential to hold onto. Some part of him wants to live. I also want to place importance on the fact that you wrote asking for autistic insight. That shows a strong level of love and respect for your son. In a world where he feels misunderstood, you’re trying to “get him.” Keep showing each other that love.
I’m writing this to you from the lens of an autistic adult who has a comorbidity of depression. As co-founder of Autism Empowerment and Editor at Spectrum Life Magazine, I have the opportunity to interface with many autistic adults, families and professionals in the autism community, however the autism spectrum is vast and I am only one representative. Also, I am not a medical or mental health professional, so what I write in this response should not be constituted as medical advice. If you have not done so already, try looking for a mental health professional who has experience treating adults with autistic neurology. Judy Endow, MSW, LCSW writes more about this in her article, Autism and Psychiatric Diagnoses on page 42. It may also be helpful for your son to connect with other autistic adults, be it online or in person. Many of us have depression as a comorbidity and it’s powerful having peer connections who share similar experiences and neurological traits. Although it’s true that a hotline volunteer might not “get us” and it can be extremely frustrating to have a bad experience, remember it isn’t the same with every volunteer and we are worth more. Keep trying.
Continued on next page www.spectrumlife.org www.spectrumsmagazine.org
Ask Spectrum Life, continued from page 14 For readers that are new to the term, having suicidal ideations is another way of saying having suicidal thoughts. It can include thinking about, fantasizing about or planning suicide but not following through on the actual act. It is common for autistic people to hyperfocus on a hobby or special topic of interest. Unfortunately, this perseveration can also happen with topics that are negative. For example, I love music and I’m the kind of person that tends to play the same song over and over again on an endless loop when I’m alone. If it’s an upbeat song and I’m exercising or it’s jazz and I’m working, there is no issue. However, if I were to listen to a very dark song when I was depressed and listen to it on loop, it could be very triggering of negative thoughts and feelings. If you see your son getting stuck in a negative loop, you might try “changing the music” by redirecting conversation (or very literally, the music itself) to something he prefers talking about or listening to when in a more positive state of mind. Health and fitness expert, Ryan Lockard answers a reader’s question in Ask the Personal Trainer on page 36 about how to encourage exercise when their loved one on the spectrum is feeling depressed. From first-hand experience, I can say that getting myself out of the home for a walk when I’m feeling down has been incredibly helpful in stabilizing my mood and reducing suicidal thoughts. People on the autism spectrum have a tendency to get ourselves caught in loops on visualizations, thoughts, sounds and sensory experiences. Some of these loops, cycles or stims might be attempts at self-regulation, however, when feeling depressed, the choices we make are not always healthy and take on a form of trying to escape from reality. This can lead to addiction and other self-destructive behavior such as self-harm, alcoholism, eating disorders, taking drugs and overspending. Many of the adults I have spoken to have found comfort through strengthening their personal relationship with God (or their Higher Power). In an article for Psych Central, Therese J. Borchard wrote about different ways faith helps depression. Of particular interest was a research study which examined relationships between belief in God and treatment outcomes. I’ll include a link to the article in our references section. Others I have spoken with have found support in 12-Step programs with a spiritual component such as Suicide Anonymous. With September being Suicide Prevention Awareness Month, there will a lot of mental health organizations stepping up to provide resources, awareness, and support. This may cause mixed and triggering feelings for loved ones who struggle with depression or suicidal thoughts. Similar to Autism Awareness Month (which we prefer to call Autism Acceptance Month), awareness campaigns about issues which are still often stigmatizing can make some people feel as if a giant spotlight is shining right on them but no-one really understands their situation. So please be careful, and thank you for listening to and validating your loved one’s thoughts and feelings.
References: NATIONAL American Foundation for Suicide Prevention - https://afsp.org Crisis Text Line - Text HOME to 741741 for free 24/7 crisis support in the United States - https://www.crisistextline.org/ National Suicide Prevention Lifeline – Call 800-273-TALK (8255). For deaf or hard-of-hearing, contact via TTY at 800-799-4889. https://suicidepreventionlifeline.org/ If you or someone you know is in crisis—whether they are considering suicide or not—please call the toll-free lifeline to speak with a trained crisis counselor 24/7. If you prefer, online chat is also available. The National Suicide Prevention Lifeline connects you with a crisis center in the Lifeline network closest to your location. Your call is confidential and free. National Association of Mental Illness (NAMI) - 800-950-6264 www.nami.org or text NAMI to 741741 Connect with a trained crisis counselor to receive free, 24/7 crisis support via text message. The NAMI HelpLine is a free service that provides information, referrals and support to people living with a mental health condition, family members and caregivers, mental health providers and the public. Project Hope and Beyond - http://community.projecthopeandbeyond.com/ Project Hope and Beyond is a program of Psych Central Community Connection, a nonprofit run by Psych Central, the Internet’s largest and oldest independent mental health social network. It is an online community for persons with unrelenting depression and anxiety, as well as their families and friends who want to better understand them. Its purpose is to offer support and hope to people whose conditions are lasting or difficult to treat, those who often fall through the cracks of today’s healthcare system. Psych Central - Borchard, Theresa J. - How Faith Helps Depression https://psychcentral.com/blog/how-faith-helps-depression/ Suicide Anonymous - http://suicideanonymous.net Suicide Anonymous is a fellowship in which we share our experience, strength, and hope with each other that we may solve our common problem and help others recover from suicidal preoccupation. The only qualification for membership is a desire to stop living out a pattern of suicidal ideation and behavior.
REGIONAL Spectrum Life Resource Directory from Autism Empowerment https://www.spectrumlife.org/categories Detailed listings for community support groups, agencies, professionals and service providers serving the autism community in Oregon and Washington. OR - Mental Health Association of Oregon - https://www.mhaoforegon.org An inclusive peer-run organization committed to promoting self-directed recovery and wellness for all individuals. OR - NAMI Oregon - https://namior.org Mental health education, support, advocacy and community for those who have mental health challenges as well as their family and loved ones. WA - Mothers of the Mentally Ill - http://bit.ly/MOMIWA Mothers of the Mentally Ill (MOMI) is an organization of parents and other family members advocating in Washington State for improved care for loved ones suffering from Serious Mental Illness (SMI) WA - NAMI Southwest Washington - https://namiswwa.org Mental health education, support, advocacy and community for those who have mental health challenges as well as their family and loved ones. WA - Southwest Washington Crisis Hotline - (800) 626-8137 | TTY (866) 835-2755 Behavioral health crisis services are available 24 hours a day, seven days a week.
Continued on page 17
Ask Spectrum Life, continued from page 15
Dear Spectrum Life:
If your child denies a handout, don’t fret. Just thank the household, give them a “Happy Halloween” and move onto the next house.
My daughter is five-years-old. We’d like to try trick-or-treating on Halloween. Any suggestions?
Choosing a costume.
Noah Dolinajec wrote a blog a few years ago for the Spectrums Magazine website (now at SpectrumLife.org) called Simple Strategies for an Autism-Friendly Halloween. Here is what he shared: As the leaves begin to change and the days become shorter, one holiday that many children look forward to is Halloween. It can be a joyous event where children are allowed to express themselves through costume, collecting candy and enjoying the fantasies of their young molding minds. However, for a child with autism, Halloween can pose some uncomfortable issues. With all the sensory inputs that the event brings, it can feel overwhelming—for children on the spectrum as well as neurotypicals. If your child is comfortable enough to attempt trick-or-treating in your neighborhood, here are some tips to help create a fun and enjoyable night: Practice at home. Children with autism can find it stressful to approach homes they don’t know, and then knock on the door and be greeted by new faces. One strategy is to help your child practice trick-or-treating. Practice some simple role-playing where your child knocks either on an interior door or at your front door and you answer, prompting their “Trick or Treat!” A little practice can have huge results on your child’s comfort level. If you know your neighbors and they’re willing to help role play, bring your child to knock on their doors in the days leading up to Halloween. Those few practice knocks can give your child the confidence to approach new and uncomfortable situations on Halloween night. Special sign or lanyard. Sometimes practice might not lead to perfect—and that’s okay! And when your child is put under pressure to greet a strange face on the actual night of Halloween, he or she might not have the words or comfort to respond. Families can also alert neighbors that a child has special needs by labeling their child’s candy bucket or creating a sign to wear on a lanyard: “Hello! I may not have the words to say ‘Trick or Treat’ but I am trying. Thank you for understanding and Happy Halloween!” Candy alternatives. Moms and dads rejoice…right? Maybe. Prepare neighbors you know that your child has special needs and that it would be helpful if they had other options available other than candy. While it’s expected that some neighbors won’t oblige, some will be more than happy to have candy alternatives to hand out, such as small toys, crackers or other options available.
Costume preparation can be an inspiring time and an activity to do together. It allows your child to use their imagination, be creative and perhaps honor a favorite character. It can be exhilarating…and a little frightening. Unfamiliar outfits and costumes can bring discomfort to those with autism or sensory sensitivities. However, there are definitely ways to help your child feel engaged with the holiday. You can include comfort items or even keep costumes very simple. If your child wanders, be sure to include glow sticks, a blinking bike light or other reflective clothing to help keep your child in sight. Start with a familiar piece of clothing that your child is comfortable in and build on it to create a unique costume, mimic a favorite character or continue using an old costume that your child has become attached to. Another idea is to simply dress your child in a fun Halloween themed shirt or sweatshirt. The goal is to keep the child happy, safe and comfortable to allow them the choice of what feels best to them. Forcing a child with autism into a costume for holiday involvement isn’t going to be good for anyone. Last but not least: don’t worry! The final reminder for Halloween prep is to take a deep breath and not have set expectations. A few things are for sure: there will be a lot of sensory input, there might be some change of heart throughout the night and not every approached household will have an appropriate response to your family. If your child has a meltdown or becomes upset, don’t overreact or push your child’s boundaries. Redirection or heading home for some quiet time may be required. Unpredictable outcomes are common when raising a child with autism, and if you run into issues that prevent fun for everyone, then head home! Whatever the night holds, make sure fun and participation are accommodating to your child’s needs. It’s always great to try new things and presume competence with your child. You never know what activities will help a child learn and try new things and create memories.
“Sucking It Up” To Pass as Non-Autistic My Ticket to the Table By Judy Endow
It is a lot of work to look non-autistic, and yet, looking non-autistic is the ticket to sit at many tables. It is not right, and yet, I choose to expend a great deal of energy inhibiting my autistic ways for the sake of sitting at some of society’s tables. Employment is one such table. Just like all other adults, I need to pay the monthly bills, buy groceries, have transportation, etc. This all poses quite the conundrum for me.
I am in my late 50’s. I have lived my life differently than the younger autistic activists and the autistic children of today. I spent some of my growing up years in an institution. Autism was not a diagnosis given out back then. Instead, I had several other labels. My institution employed behavior modification. I learned to “suck it up” to purchase my ticket to freedom – discharge from a state mental institution. If I had to do it again – yes, I would
I spent most of my life to trying to figure out the world around me – to fit myself into it in such a way as to feel more comfortable, raise my children, remain employed and have a few good friends. This all has come at a high personal cost. In many areas of life, I have to literally “suck it up” and be someone I am not just to have a ticket to participate.
choose to “suck it up” and be someone I wasn’t because the ticket I needed to buy was important enough to me to be able to purchase.
As a young adult, I failed at my first attempt to get a college degree. For three years, I was successful at “sucking it up” and acting non-autistic enough (even though I hadn’t Continued on next page www.spectrumsmagazine.org
“Sucking It Up”, continued from page 18
yet heard of autism) – acting as a stranger to myself, roleplaying somebody I wasn’t. It worked for almost three years. I learned that even though I could act as somebody I wasn’t every school day for three years, that being the person I was for one instance could undo all of the three years. If I had to do it again – yes, I would choose to “suck it up” and be someone I wasn’t because the ticket I wanted to buy was important enough to me to try my hardest to purchase. As an older adult, I succeeded at my next attempt to get a college degree. By that time, I had almost 20 more years of “sucking it up” practice on my side. Even so, I knew there was a personal limit on how long I could “suck it up” – hiding my autistic self so others would allow me to make it through college. Thus, I sped through college as fast as I could go, cramming in as much as possible in the shortest time. I did a four-year undergrad program in three years and a two-year graduate program in one calendar year (a fall, winter and summer semester). Academics were no problem. The way I came off to other people was a problem. Therefore, the less I was around one group of people the better off I was in terms of not drawing attention to myself and in not alienating professors and fellow students. If I had to do it again – yes, I would choose to “suck it up” and be someone I wasn’t because the ticket I wanted to buy was important enough to me to try my hardest to purchase. In my work life, I was able to “suck it up” and be someone I wasn’t so as to maintain employment to provide for my children. It was exhausting. And yet, if I had to do it again – yes, I would choose to “suck it up” and be someone I wasn’t because the ticket I wanted to buy was important enough to me to try my hardest to purchase. I wanted the freedom to parent my own children without someone deciding I was not able to do so. And believe me, I had more than my share of those someone’s in my life due to one child’s needs. One of those people who had power over me said as long as I maintained my job I would be seen as fit to parent my children. So, yes – a thousand times over I would again “suck it up” – to be someone I wasn’t for the sake of keeping my ticket to parent my children. They are now all grown living their own happy and fulfilled lives. “Sucking it up” was entirely worth it to me. Today I am fortunate enough to support myself by running my own business. This sounds fancy and highfalutin, but in reality, it means that I need to be in charge of my own schedule. I have figured out how to string together enough different kinds of work (consulting, writing, art, speaking) that I am able to maintain an income sufficient to pay the bills and live my life. The deal breaker is I must schedule my work in a way to provide me with alternate time at home (writing, art and preparing for speaking) and time away from home (consulting and speaking along with the travel involved). Even so, this still means that when hired to consult and to speak I must employ a certain degree of “sucking it up” in order to get people to value my work enough to hire me. I continue on in this manner because I enjoy my work, my travel and in general, my life as it is today. On occasion, younger autistic adults fault me for “sucking it up” and being someone I am not. I know this because they tell me so. There is a term I have recently learned called “passing.”
I am told that when I am “sucking it up,” I am “passing.” It means I have learned to act as a phony – a sort of pretense at being non-autistic. In reality, for me, it means that when I am in employment situations I expend a great deal of energy to inhibit my natural self. This is necessary to me in order to support myself. Do I like it? No. Even so, I am glad I am able to “pass” when I need to because it has made my life better than when I couldn’t “pass” in that my income is more stable now than then. Many argue that all people have to do this “sucking it up” to some extent. After all, we cannot just act however we wish when we are in public. I agree. However, autistics have to do this to such a greater extent that it prohibits many of us from being employed because we simply cannot “suck it up” long enough each day to be gainfully employed. For me, it means I must pay strict attention to how I schedule my life. I must employ sensory regulating activities and much quiet time in order to be in shape to be able to “suck it up” when I go out the door to work away from home. I think my life is the best it can be at this point in time. I hope the lives of younger autistics have broadened possibilities as we go forward into the future. I hope more autistics are able to be the person they are, utilizing the supports and accommodations they need, without society insisting they hide their very essence at every turn. I look forward to autistics having everyday lives with things so many take for granted – going to school, being part of the community, having meaningful jobs with living wages along with meaningful relationships. This is the stuff of a satisfying life. All people should have access without society’s requirement of “sucking it up” before a ticket is extended by the majority to those of us in marginalized groups. This article was originally written and published for Ollibean.com on March 20, 2014. It also appears on 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. Judy can be reached through her website, www.judyendow.com.
recreation INCLUSIVE WAYS TO HAVE FUN
IN THIS SECTION Gaming Across the Generations...................................................... 22 Instruments Ballet Academy............................................................ 24
Classical Ballet ages 3 -18 Contemporary and Jazz ages 8 & up Adult open ballet Equipped to give the next generation confidence, passion and discipline Special needs classes available for all abilities
Register in advance at: www.instrumentsacademy.com or call 971.413.2730 19077 S Beavercreek Road Oregon City
Gaming Across the Generations Board Games, Card Games, Video Games, Oh My! By Game-O-Rama Mama People of all ages and abilities enjoy different forms of gaming, whether it be board games, card games, Bingo, video games, party games or other games of skill and chance. From role-playing games (RPG) like Dungeons and Dragons (D&D), to Minecraft, to having a Mario Kart race on the Wii to getting together with other enthusiasts in the community for a Pokémon GO event, gaming is a recreational activity enjoyed by hundreds of millions of people in the United States and around the world. Gaming provides an opportunity for social interaction among youth and adults and is a great way to connect with others who have similar interests. One wonderful thing about the Portland/Vancouver metro area is there are many options to connect with gamers of all ages, be it through a school, library or MeetUp.com. Spectrum Life Magazine has put together some resources to help connect people to activities that might be enjoyable for you or your family. This is not all-inclusive but a start to help you see many of the great opportunities out there. Please let us know if we’ve missed any of your favorites! To confirm or check for changes in schedule, please consult each group’s website or contact the email listed for the most up-to-date information. Autism or Disability-Related: Youth, Teens, and Families AE Tween and Teen Social Club 3rd Saturday of most months, 6:00 pm - 9:00 pm Northwest Gospel Church, 305 NE 192nd Ave Vancouver, WA 98684 (360) 601-4678 email@example.com http://bit.ly/aetweenteen Hosted by Autism Empowerment, this group is geared toward youth 11 - 19 on the autism spectrum. The cost to attend is $10.00 per month per family plus a snack to share. Pizza and drinks are included. This group is designed for the youth to interact independently. Mentors are available to assist when needed. Parents stay on-site and a separate Autism Empowerment Parent Autism Support Group runs from 6:30 - 8:30 pm. Life Works Retro Gaming Nights 906 New York Street, Longview, WA 98632 (360) 577-9093 x2233 email: firstname.lastname@example.org https://www.lifeworkswa.org Starting in Spring 2018, Life Works began hosting a weekly Friday retrogaming night. The 1st and 3rd Fridays each
month are for adults and children 16 and up, while the 2nd and 4th days of the month are for children under the age of 16. Feel free to contact us with questions! We have Atari, Nintendo NES, Nintendo SNES, Sega Genesis, n64, Gamecube, Xbox, and Playstation systems hooked up with games to play, in addition to board games. This is an autism spectrum friendly event that is designed to help kids and adults on the spectrum meet and socialize with others over a shared hobby. Oregon Family Support Network Game Night 4th Friday of each month (except Nov. and Dec) 6:30 pm - 9:30 pm Oregon Family Support Network Office, 909 NE 30th Ave Portland, OR 97232 (503)784-3004, email@example.com $5.00 per family plus bring a snack to share. This is for youth and young adults with developmental, mental health and other special needs and their families to have access to social and recreational opportunities. West Linn Game Club 2nd Friday of each month, 6:30 pm - 10:00 pm West Linn Lutheran Church, 20390 Willamette Drive West Linn, OR 97068 www.pdxaspergers.org/game_club Hosted by Portland Aspergers Network (PAN) and is for the whole family. The cost to attend is $10.00 per family plus bringing a snack to share. During game night there is also a Teen Club from ages 13 to young adult. Local schools, libraries and community centers also regularly host gaming opportunities for youth and families. Youth and Adults Microsoft Store, 300 SW Yamhill St., Portland, OR 97204 (503) 265-1400 www.microsoft.com/en-us/store/locations/or/portland/ pioneer-place/store-40 Variety of gaming tournaments each month. Contact them for more information. Pigsquad (Portland Indie Game Squad) https://pigsquad.com/calendar The Portland Indie Game Squad is a 501(c)3 organization dedicated to supporting the health and continued expansion Continued on next page www.spectrumsmagazine.org
Gaming Across The Generations, continued from page 22 of game developer and enthusiast communities in Portland, the Pacific Northwest, and online. We provide events, resources, and networking activities for art and technology creatives. They offer a number of events each month at different locations. Mostly Adult The following businesses have adult gaming groups on a variety of days and times. Some do have youth groups, so please feel free to check out the calendars as well and contact them to see what the appropriate ages might be. Cloud Cap Games, 1226 SE Lexington St., Portland, OR 97202, (503) 505-9344 www.cloudgame.com
Rainy Day Games, 18105 SW Tualatin Valley Highway Aloha, OR 97003, (503) 642-4100 www.rainy-day-games.com Other events every day with a wide range of gaming, Magic, Star Wars, Pokemon, D&D and more. The Portland Game Store, 922 N. Killingsworth Street Portland, OR 97217, (503) 289-6373 www.theportlandgamestore.com Friday night Magic as well as a wide range of events throughout the week.
Monthly Friday night game nights, Pokemon League as well as Dungeons & Dragons (D&D) and Magic parties each Saturday as well as other events each month. Dice Age Games, 5107 E. Fourth Plain Blvd #105 Vancouver, WA 98661, (360) 772-8967 www.diceagegames.com/events Monthly role-playing games on different days, Friday night Board Game night, Friday night Magic the Gathering and Pokemon League each Sunday. Epic Gaming, 17185 SE McLoughlin Blvd, Ste. E. Milwaukie, OR 97267, (503) 850-4756 www.epicgaming.tcgplayerpro.com Offers a wide range of events and gaming daily including, Magic, Yu-Gi-Oh!, Pokémon, D&D and more. Geeks & Games, 1656 C Beavercreek Rd. Oregon City, OR 97045, (503) 650-5008 www.ocgreeksandgames.com
Game Conventions, Events and Meet-Ups
Offers events daily with a wide range of gaming including Magic, Pokémon, D&D and more.
This area also has gaming conventions and events throughout the year. Here are ones coming to our area soon.
Guardian Games, 345 SE Taylor Street, Portland, OR 97214, (503) 238-4000 www.ggportland.com
Minecraft STEM Night at BESThq Friday, September 21st from 6:00 pm - 8:00 pm 12745 SW Beaverdam Road, Beaverton, OR 97005
Every day of the week they offer a variety of events focusing on many types of role-playing games.
Join the BESThq community for a fun FREE night full of building with Minecraft and STEM! No background in STEM or Minecraft is needed. We’re connecting STEM professionals and friends to “build together.” FREE dinner snacks and beverage. All are welcome, family friendly! Those under 18 must be accompanied by an adult and may be photographed. For more information - info@BESThq.net
Mystic Realm Games, 14313 NE 20th Ave, Ste. A104 Vancouver, WA 98686, (360) 797-5739 www.mythicrealmgames.com Monthly role-playing games on different days. Friday nights are Magic night and they also have a Girl Gamer Meetup each Tuesday. They also offer escape rooms at their Vancouver Mall location. Other World’s Games and Comics, 6350 SW Capitol Hwy Portland, OR 97239, (503) 244-0290 www.otherworldsgames.com Each Thursday is Board Game night and Sunday afternoon is Magic. Other events throughout the month.
Portland Retro Gaming Expo Friday, October 19th - Saturday, October 21st Oregon Convention Center 777 NE MLK Jr. Blvd., Portland, OR 97232 www.retrogamingexpo.com 2018 will mark the 13th annual Portland Retro Gaming Expo. PRGE is a locally-produced event celebrating the Continued on page 27 www.spectrumlife.org www.spectrumsmagazine.org
Instruments Ballet Academy The Art of Dance Transcends… By John Krejcha
Photo courtesy of Instruments Ballet Academy
In our search for new and unique programs that support the autism and disability community, Spectrum Life Magazine recently learned of a ballet program and academy in the Portland metro area that provides a wholesome and encouraging environment for children and adults to learn how to dance. We spoke with Cindi Miller, the Academy Director of Instruments Ballet Academy about their programs and philosophy so we could share how they were “on pointe” with our community. Tell us about the background of Instruments Ballet Academy. Instruments Ballet Academy opened in September 2017 in Oregon City after years of dreaming and planning. Our youngest daughter, Rebekah Atkins is a professional ballet dancer as well as the Founder and Artistic Director of Instruments Ballet Company. We felt during the birthing stages of the company that an academy would be a great launching pad which would provide studio class and rehearsal space as well as teaching and mentoring opportunities. What is the difference between Instruments Ballet Academy and Instruments Ballet Company? Instruments Ballet Company is a Christian performing group dedicated to sharing the good news of salvation through dance. They are a talented and dedicated group of dancers. We are fortunate to have our very own company in residence. This association provides young professional dancers as mentors for our students. They also make up a large portion of our teaching staff, many of whom have traveled the world sharing their faith. What kind of classes do you offer and what ages do you serve? Instruments Ballet Academy is a place where the truly committed and talented are fine tuned to the task ahead, be it recreational or professional dance. It is also a place where kids with physical, emotional and mental differences and difficulties can forge ahead to safe, fun and inspiring movement and musical expression. Our classes accommodate students from two-and-a-halfyears-old through adulthood. Ballet is foundational for all styles of dance so that is our priority, although we do offer classes in Jazz and Contemporary.
If you are looking for a wholesome, encouraging environment for your child to learn how to dance, then look no further. We want to bring a quality of dance education that’s never been seen in the south Portland area. Not only do we offer quality dance instruction at an affordable rate, in a brand new state of the art studio, we strive to provide a safe space for children, teens and adults from all walks of life to learn the principles of rhythm, movement, and expression. This includes students with special needs or other disabilities. We integrate our classes as much as possible so that every child has a rich experience and builds positive relationships with their classmates and teachers. We also offer ‘Dancing Fun’ classes for students with special needs beginning at age seven. We are sensitive to individual student preferences regarding clothing, lighting, music and levels of ability. Parents are encouraged to assist if needed. These classes are offered at a low drop-in rate with no requirement to sign up for the whole term. Come as you are able. We welcome you with open arms. Is there a typical class structure or are they all customized? Ballet classes traditionally begin with stretching or barre work, followed with across the floor, centerwork and reverence, which closes the class. Length of classes range from 30 minutes for our littles to two hours for our advanced students. Continued on next page
Instruments Ballet Academy, continued from page 24 How would somebody get started to determine what would be best for them? Our new students always have the opportunity of taking their first class for free. Afterwards, the instructor can place the student appropriately. Tuition is based on the length of class beginning at $45 a month for 30 minutes once a week, up to $325 a month for unlimited weekly classes. Our annual family registration is $35 then $25 for returning families. Do you have a personal connection to someone on the autism spectrum? We have an autistic bipolar grandson, Tyler. I have always believed great and ordinary things for his future. Last year in middle school, he was an integral member of the city football team and recently he got his first TriMet card. Do you have any stories to share of current students with disabilities? Special needs kids are awesome and deserve to have the same opportunities as all children. Our hearts are full when we witness the joy our classes bring to our students. We currently have a young dancer at our studio who is legally blind. However, her father has mainstreamed her into so many activities. She loves her ballet class time, attending twice per week. In addition, there is a teen girl with cerebral palsy who takes our ‘Dancing Fun’ class. Her mother assists so she can dance without the aid of her leg braces. She especially enjoys ‘holding her tiara’ on her head. The movements in class help to strengthen and stretch her limbs.
What else would you like Spectrum Life readers to know? Instruments Ballet Academy is here to inspire the next generation of leaders with the confidence, passion, and discipline they will need to succeed in every area of their lives. We believe your kids are capable of great things. The art of dance transcends language, culture, class and disability to enable participants understanding and expression. Children and people of all ages can come alongside each other to experience this beautiful communication of the soul, truly a gift from God. Seeing children share in this activity not only enriches their lives but the lives of all who participate with them. We have so much to learn from the community of dancers. Why? Because God gifts each person uniquely, according to His plan for them. We are all winners when we join. So, help me welcome the divinely gifted, in whatever area that giftedness lies. Additional details can be found on our website, www.instrumentsballetacademy.com and we invite Spectrum Life Magazine readers to join us at our Instruments Ballet Academy Facebook page for all the latest news.
Where are you located? Instruments Ballet Academy is located in Oregon City within the Berry Hill Shopping Center. The address is 19077 S. Beavercreek Road, Oregon City, OR 97045. We have a ground level location that offers wheelchair accessibility and is user-friendly for people with different kinds of disabilities. Our phone numbers are (503) 303-4615 or (971) 413-2730. We can also be reached through email us at: firstname.lastname@example.org. What do you see for the future of Instruments Ballet Academy? Having just opened in September 2017, our inaugural year brought lots of growth and some growing pains. Our end of the year recital, A Day At The Park, was sold out and we are already considering more than one Christmas show to accommodate the family and friends of our students. We recently completed our 2018 Summer Camp lineup with classes this past July and August. The Fall Quarter classes beginning Sept 10th will increase to six days a week. All in all, it has been a wonderful beginning and we cannot wait to see what the new year and future brings.
John “Tiara” Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing sons, Justin and Ryan. While John is the only one in his family who is not on the autism spectrum, he is also neurodiverse. www.spectrumlife.org www.spectrumsmagazine.org
education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
IN THIS SECTION A Note to Start the School Year ....................................................... 28 My Child is Being Picked On â€“ What Should I Do?................... 30
Gaming Across The Generations, continued from page 23 colorful history of console, computer and arcade gaming. In addition to workshops, exhibits and vendor tables, we have a massive arcade. All of the coin-operated games are set to free play for the weekend. Please join us for this fun, educational and family-friendly event! Autism Empowerment Social & Gaming Event FREE! Saturday, October 27th from 11:00 am - 3:00 pm Orenco Presbyterian Church 6420 NE Oelrich St. Hillsboro, OR 97124 For information, email: email@example.com or call (503) 330-4789 This is a family-friendly Boy Scout Eagle Project by Zachary Parrott to show where kids and adults can learn about autism, and have fun while doing it! We will have board games, video games and socialization. Food and drink are provided. MeetUp.com also lists over a dozen gaming groups in the Southwest Washington and Portland metro area. Whether you’re looking to play cards, role play or live stream, there are gaming groups available and although not advertised as autism-specific, many do have neurodiverse members. Do you have a gaming resource or event you would like to see in the online resource directory at our Spectrum Life Magazine website? Please email SpectrumLife@autismempowerment.org and visit www.SpectrumLife.org to see current resources!
Spectrum Life Magazine Reader Survey & Contest We’d love to get your feedback on our FALL 2018 issue! What did you like about this issue? • Which articles did you read? How can we improve? Answer our quick online survey by November 15th, 2018 and be entered to win a surprise package worth over $50! https://www.surveymonkey.com/r/slmFall2018
A Note to Start the School Year Getting Off to a Positive Start By Aaron Blackwelder
The start of a new school year arouses many feelings. Anxiety, excitement, curiosity, nostalgia, to name a few. The start of a new school year also signifies a milestone in the life of the child: a new grade level, new students, and new curriculum. There are so many new experiences to anticipate, which can be overwhelming. One thing most students can expect is to meet new teachers. New teachers mean learning new rules, procedures, and personalities. This can be stressful for any child, especially for children on the spectrum. The start of a new school year is also stressful for teachers. Besides all the other duties, teachers are expected to learn about their new students. Though teachers are provided student Individualized Education Programs (IEPs) prior to the start of the year, it is difficult for teachers to fully prepare for each new student with an IEP. As a classroom teacher, I am overwhelmed with challenges that always come with the start of a new year. I have to learn new school policies and procedures. I have to review curriculum and plan lessons. Often, I have to learn new curriculum as it changes and sometimes I’m assigned classes I have not previously taught. I have to make copies and set up my classroom. On top of that, I need to review IEPs and familiarize myself with accommodations and modifications. Because of all the new information, it takes quite a while before I know each of my IEP students. Two years ago, I had one IEP student who I got to know quickly. He sent me an email prior to the start of the year that let me know who he was, his interests, what were his struggles, and suggestions as to how to help him when he is struggling. Not only that, but he included a picture of himself in the email. This was powerful. The student let me know he struggled with reading but loved to write creatively. Because he shared this information with me I was able to consider what accommodations I could make as we started novel units and offer more fictional writing assignments as opportunities to demonstrate learning. This quick note made it possible for me to get to know this young man and plan how I can teach to his strengths and weaknesses. I know children have a spectrum of strengths and weaknesses that depend upon their age and their cognitive development. So, when having a child write an email to a teacher take the following into consideration:
3 What is my child’s ability to express him/herself in writing? 3 Would they prefer typing or handwriting the note? 3 Are they able to sit for an extended period to write? 3 How much help will they need? Parents know their child best and can help support better than anyone. However, I would encourage that we give our children as much control over their learning as possible. The more control the child has over the message, the more authentic it will be for the teacher to get to know them. In my family, we started a tradition last year of having both of my boys send similar emails to their teachers. When I approached my boys about writing an email, I made it a conversation. I let them know that their teachers would have over one hundred students the next year and it would take a while for them to know their struggles and what they can do to help them. I told them about the boy who wrote the email to me last year and how powerful it was. I asked them what they felt was important for their teachers to know about them. Finally, I asked them if they would like to write an email to their teachers. Ultimately, they were quite willing to do it. One of the greatest temptations for parents is to take over the task. I warn against this. If your child does not want to write then don’t force it. You are welcome to write an email yourself. If they want to share certain things you feel are not necessary or do not want to share certain things you feel are necessary, again, don’t force it. It is good to help your child revise and edit the note, but don’t make it your note. Of course, if your child needs more assistance, please do so. Just be sure to give your child control over the message. And if the school year has already started, I still recommend having your child write the message. This note will communicate the child’s needs better than any IEP can. As a teacher, I would welcome a note like this anytime during the year as it would give me a much better perspective of the child. Lastly, I would encourage that the parent is copied in the email. This will keep the parent in the loop and part of the conversation as the teacher replies. And as the school year progresses, encourage your child to continue to drop notes to the teacher explaining what the teacher is doing well or discuss concepts where the child may be struggling.
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A Note to Start the School Year, continued from page 28 Aidan’s email:
Hi. I’m your new student. I have autism. I don’t like talking about it.
Hi, I am 15 years old, and I live with my Mom, Dad, My brother, and my dog. Here are a few things that interest me. I love to sketch, draw, and create made up characters. Pokemon also interests me because I am a huge fan. My favorite T.V shows are Impractical Jokers, Cake Wars, and The Simpsons. I’m a little bit nervous about high school for several reasons
I’m happy to be your new student. Maybe you had my brother, and I’m nothing like him. For your information, I can get frustrated easily. When I do get frustrated I let you know and I may excuse myself by asking you. If you notice me getting frustrated it is ok to tell me to go take a break. Just because I’m gone, I still want to do my school work. I do karate, I have a pug puppy, I’ve been in a magazine for, well, my pug, and the newspaper for catching the biggest fish at a fishing derby. I struggle with humanities and writing in general and, also, I have a hard time spelling. I enjoy doing math and art because they’re my favorite subjects. I hope to see you soon.
• • • •
Meeting new kids Meeting my new teachers Wondering who will be my new friend How hard the work is on a scale of 1-10
So yeah, those are the few reasons why I’m a little bit nervous about this new school. The thing that you may or may not know about me is that I have autism, but here is the thing I don’t like talking about my autism (a bit of a side note) or about my personal stuff. Though if you know or not know what autism is I’ll tell you. You see autism is a special spectrum that makes our work brains different but in an odd way it causes me to think differently, it works differently, and even helps my movement differently. If I get frustrated I usually will take a break and calm myself down. Sometimes I just need to get up and walk around the classroom or walk around the campus. This helps to calm down. I hope I get to see you and the other kids from different schools. See you on the 30th.
Aaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He is married and the father of two boys with autism who have shaped him as an educator. He is passionate about creating learning environments for all students. In his free time, he writes his blog, “Thinking 101” where he shares his ideas about education. Visit mrblackwelder.wordpress.com.
Photo courtesy of Bell Studios
I believe the purpose of education is to teach students how to learn and help prepare them for their future. Allowing our children to advocate for themselves is one of the greatest lessons we can offer them. Encouraging self-advocacy early will help our children take ownership of their education and face challenges that will arise throughout their lives.
My Child is Being Picked On – What Should I Do? A Parent’s Guide to Bullying By Diane Wiscarson and Taylar Vajda, Wiscarson Law Long gone are the days of tolerating bullying as “character building” or “kids being kids.” Bullying can have serious long-term consequences on a child’s education and well-being – ask any parent. Thus, it’s important that every effort be made to create a safe environment at school. This is especially important for children with special needs who can be vulnerable targets at school, and may not understand that a situation is harmful. They may also not know how, or be able, to ask for help. Parents need to know when and how to advocate for their child. Bullying and harassment often goes unreported, or the school is unresponsive. Parents can play a big role in advocating for their children when incidents happen. Parents of children with special needs have a right to know what’s happening to their children at school, and what to do when conduct crosses a line.
What is Bullying? Bullying and Harassment People use the word “bullying” in everyday conversations, but it actually has a specific meaning in the law. Bullying or harassment is conduct severe or pervasive enough to limit a student’s ability to participate in school. This can include physical behavior like violence or psychological aggression like making threats. Harassment also includes cyberbullying, or bullying done through technology. Cyberbullying can include texts, emails, social media exchanges, and more. Harassment does not need to be directed at a specific child or involve repeated incidents. For example, a student was found to be harassed after a one-time incident where peers addressed him as “Radio” (in reference to the movie) in his school yearbook. While bullying can occur in a variety of relationships, the focus here is student-on-student bullying.
was mocked for his ADHD and not allowed to participate in class field trips, was a victim of disability-based harassment. If bullying based on a student’s disability creates a hostile environment for that student to learn in, then it counts as disability-based harassment. Hostile Environment What is a “hostile environment?” This is when bullying prevents the student from benefiting from participating in school. If the conduct is so severe or pervasive that it limits the student’s ability to participate in school activities, the harassment has created a hostile environment. Factors that might make an environment hostile include the type of bullying, the relationship between the bully and the victim, and/or how often the student is being bullied.
What should I do if my child is being bullied? Parents are frequently the first to recognize that their child is being bullied. Be vocal! No instance of bullying is too small, or too unimportant, to mention. You know your child better than anyone else. If your child has an issue with bullying at school, it is important that you notify school staff, including administrators. The type or amount of bullying does not matter. Any bullying should be discussed with your child and reported immediately. Make sure you’re exhausting your efforts by bringing up your concerns at Individualized Education Program (IEP) meetings and any other documented means. For instance, send an email to school staff, and copy the Special Education Director. Explain that you believe your child is being bullied, and tell the school what is going on.
Do your best to be clear and specific about what is happening. When reporting concerns of harassment to the school, parents should report as soon as possible, be specific, make their reports in writing, and request a 504/IEP meeting if necessary.
Bullying because of a disability can be especially traumatic. Disability-based harassment can take many forms – such as name-calling, threats, or humiliation – but it all centers on the student’s disability. Basically, if your child is picked on because of their disability, that is disability-based harassment. To illustrate, a student who
Any 504/IEP meeting should address three things. First, address whether the student’s needs have changed due to the harassment. Second, the team should talk about whether the student’s services have been affected by the harassment. Finally, the teams should consider and decide if additional or different services are needed for the student.
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A Parent’s Guide to Bullying, continued from page 30
What does the school need to do if my child is being bullied? Must have notice School districts must respond to harassment that they know about or should know about. You don’t have to use specific words like “harassment” or “disability” to inform the school that bullying has happened. For example, in one case, the courts decided that although parents didn’t mention their child’s disability when complaining about name-calling, the district should have still done something about the parents’ complaint. Must respond reasonably Once the school knows that disability-based harassment might have happened, the school must address the problem and prevent it from happening again. The school’s steps taken must be “reasonable.” A reasonable response might include interviewing students and staff, separating the harasser and the victim, taking disciplinary action against the harasser, offering counseling, and/or training staff. The school’s action must be to stop the bullying and hostile environment for the student. Must provide a FAPE School districts must offer every student a free appropriate public education (FAPE). Bullying can affect a student’s access to a FAPE. If a student is no longer benefiting from school because of bullying, that student is being denied a FAPE. Schools must look at the effect bullying has on a student and whether the student’s needs have changed due to bullying. For students who have an IEP or 504 Plan, the school should schedule a 504 or IEP meeting. Harassment can affect a student in many ways, including changes in grades or academics, emotional or behavioral outbursts, school or work refusal, or an increase in absences. Any of these changed behaviors should prompt a district to hold an IEP/504 meeting.
When to call a lawyer? If you feel the school district is not responding to you, you may want to call an attorney. An attorney can discuss a variety of options, including filing various types of complaints, both within and outside of your local school district. Options vary in time, cost, and remedies. There is no “one size fits all” solution to issues of bullying. It will depend on the individual circumstances and facts of the case. However, a lawyer can help parents recognize their options and recommend the best course of action. If bullying is an issue for your child, take action immediately to stop the bullying and limit long-term effects on your child. Let the school know that you have concerns, and make sure they respond. If you have exhausted your efforts, and the school isn’t responding in an effective manner, consider contacting a special education lawyer. No child should ever feel unsafe or unwelcome at school, and every child deserves an education free from bullying.
Wiscarson Law was founded in 2001 by Diane Wiscarson, who earned her J.D. at Lewis & Clark Law School in 1996. Wiscarson Law has since shepherded thousands of Oregon and Washington families through the region’s public schools and educational service districts on behalf of their special needs children. Taylar Vajda is currently a clerk with Wiscarson Law and is pursuing her J.D. at the University of Oregon School of Law. For more information call 503.727.0202, or go to wiscarsonlawpc.com.
health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
IN THIS SECTION It Takes A Village ...............................................................................33 Ask The Personal Trainer.................................................................. 36
HEALTH + WELLNESS
Let Us Help You Connect with Yours
By Karen Krejcha “It takes a village to raise a child” is a phrase that first gained popularity in the United States in the 1990s and is commonly used today. Many people believe the saying has roots in African villages and originated as an African proverb whereas others have found similarities in Native American culture. A primary idea behind the proverb is that a child is not raised by one person or family alone. Each child is part of a bigger community (their “village”) where many different kinds of people interact to help keep that child healthy, safe and educated. When communities work together to confront the social challenges that they are facing, there is a better opportunity for village members to thrive. Local advocate Beth Hammer knows that raising a child with exceptional needs is no small task but she has a lot of tools in her arsenal to help families. Spectrum Life Magazine recently connected with Beth to talk about the It Takes A Village Conference she recently coordinated on behalf of Washington Autism Alliance and Advocacy in June 2018. Tell us a little about yourself and your relationship with the autism community. I have lived in Vancouver, Washington my entire life. Over my career, I have spent many years working in disability services, first as a Job Coach/Job Developer and most recently as the Regional Outreach and Advocacy Coordinator for Washington Autism Alliance and Advocacy (WAAA). I come from a family with a history of social service. My stepmother was a teacher at the Washington State School for the Deaf for 44 years and my dad was a teacher for 25 years, so maybe it’s part of my DNA? I have two nephews on the spectrum which makes my work with WAAA personal. One nephew did not receive a diagnosis until he was in his late teens and was not provided with the early intervention tools that can be so beneficial. As a result, he has struggled his entire life, has been incarcerated and experiences drug addiction and homelessness. Watching his struggles gives me the drive to help families navigate through the complicated systems they find themselves in and assist them in finding the appropriate services for their children. I firmly believe it takes a village to
raise a child, and that village needs to be especially large and strong when that child has special needs. What is Washington Autism Alliance & Advocacy (WAAA)? WAAA is a personal advocate and legislative champion for children and adults with autism spectrum disorder (ASD). WAAA started in 2007 out of necessity by a mother whose children with ASD had been denied autism-related health insurance and the special education support they desperately needed. At the time, there were only four members, each who had children with autism and wanted to fight for their right to autism health benefits. Led by Arzu Forough, WAAA began a grassroots campaign to find and enlist the help of other families with autistic children in every ZIP code across the state. Three years and 800 members later, WAAA successfully achieved health care coverage for all of them through Washington state insurance. We also had several other wins for individuals covered by private insurers. Our efforts have helped more than 12,000 Washington residents secure autism coverage to pay for vital therapies that might otherwise cost a family $25,000 to $50,000 per year. WAAA gained not-for-profit status in 2012. Today we provide Insurance, Family Resource and Education Navigation support to an average of 3,000 member families a year in every county throughout Washington. We continue to lobby for social change and improved public policies on behalf of children and adults with autism. We are a mighty but very small team of fierce advocates. Since WAAA is headquartered in King County, it was somewhat unfamiliar to many in Southwest Washington until you came on board. When did you join WAAA? I started with WAAA in September 2016 and was charged with finding out what resources were available in Southwest Washington, where the gaps were and where WAAA might help to fill those gaps, especially in regards to insurance benefits and access to Applied Behavioral Analysis (ABA) therapy. When talking with families, it was obvious that they were hungry for information, resources and assistance in navigating this winding and complicated road they are traveling. Continued on page 34 www.spectrumlife.org www.spectrumsmagazine.org
It Takes A Village, continued from page 33 You recently coordinated and hosted the It Takes A Village Autism Conference at Clark College on June 9th, 2018. Who was it geared toward? We wanted to reach a wide audience with our first conference. We have tremendous support and advocacy groups in this area along with top-notch service providers. Our goal was to bring them together through the format of a local conference where we could present families with a wide range of options and hopefully some they weren’t aware of. What were the goals and objectives of the conference? Geared toward families, we hoped to have something for everyone. For example, one goal was to provide content interesting to those with little ones and families new to an autism diagnosis. We also wanted to support adults on the spectrum looking for information and networking. Additionally, we wanted families to have an opportunity to network with each other and have a better understanding of what services are available in our area. By providing an opportunity to meet various vendors, including individuals who experience disabilities running their own businesses, we wanted to provide hope. While WAAA has autism in its name, we aim to assist any family with autism or other developmental disabilities. A village is comprised of many ages and abilities and we want our village welcoming to all. How was the conference day organized? This conference was a one-day event held from 9:00 a.m. - 3:00 p.m. at Clark College. As Master of Ceremonies, I offered opening remarks and moderated our closing panel discussion. WAAA’s founder and CEO, Arzu Forough also spoke to the audience, introducing them to the work that WAAA does throughout the state. She was especially impressed by the sense of community in Southwest Washington, the obvious desire to work in collaboration with each other. She also liked the diversity of our vendors and that while the topics were serious, there were fun elements as well. Our keynote speaker was autistic self-advocate Ivanova Smith who spoke on “True Autism Acceptance” and powerfully shared some of her personal history with our audience. After the keynote, attendees had the option of participating in breakout sessions held in nearby classrooms. Each session was 50 minutes and the transition between was 10 minutes. We had 15 speakers throughout four different breakout sessions. One lesson learned was slightly shorter sessions and slightly longer transition time! We used Gaiser Hall (the main hall at Clark College) to set up the vendors, which I think worked great. With 40 vendors participating from throughout Washington and Oregon, there was plenty of room and it helped create a
spirit of togetherness and allowed for great networking opportunities between the vendors. I liked that our entertainment and panel discussion was on the main stage in Gaiser Hall, kind of acting like the town square of our village! The 2019 It Takes a Village conference will include more activities in our “town square.” The day concluded with a panel discussion featuring three male and two female adults on the autism spectrum answering a wide range of questions about their life experiences. Which breakout sessions seemed to generate the most interest? I think they were all very well received; the sessions around legal issues were especially appreciated by parents. I heard from several people that they wished they had been able to attend more sessions. We had 15 presentations and hope to have around 24 in 2019 and will again provide a wide range of subjects. Additionally, I think the panel of adults on the spectrum was especially hopeful, seeing adults who are leading full, complete and happy lives, something that may seem out of reach right now to many parents of younger children. How would you describe the demographics of the people who attended? I would say the majority of attendees were those with younger children. Breakout sessions around Individualized Education Programs (IEPs) and ABA were especially well attended by those with grade school children. However, there was also a great response to topics like Guardianship and Creating a Full Life, indicating there were families with kids approaching adulthood. Please share a favorite moment from the event. Wow, there were many. I enjoyed the giant dog that Autism Anchoring Dogs shared with us. I mean, who doesn’t love a huge fluffy dog! All of the stage entertainers were awesome. I don’t know that I can identify one particular moment, but loved the whole atmosphere of camaraderie and community. You mentioned during the planning stages of the conference that it was imperative you include the voice of the autistic community at the event. How did you do this? If you’re going to be talking about someone, that someone should have a voice. I thank you and others for your guidance in helping me to shape that important element. Several of our breakout sessions were led by individuals on the spectrum. Our panel discussion included five autistic adults speaking to their experiences. Our entertainers on stage were individuals with autism and other developmental disabilities. We also had vendors who experience a wide range of disabilities. Continued on next page
It Takes A Village, continued from page 34
I think our wonderful keynote speaker who was able to share her experience of growing up on the spectrum was especially powerful. I hope we achieved our goal to include autistic community voices in every part of the event. Next year I hope to engage even more individuals with autism and other disabilities in the planning process and all the way through the event. Does WAAA host this type of conference in other parts of the state? No, this was our inaugural event! We do host other workshops for parents and professionals around the state in regards to Special Education Law and Health Law and are available to provide training to agency staff. What were some of the biggest challenges in planning the conference? Oh, that list is a long one! The biggest challenge was probably the timeline. I didn’t start the planning process until late February, early March which gave me a very small window of time to pull things together. I sincerely appreciate the parents and professionals who allowed me to pick their brains and who provided great insight into what was important to have present at the conference. I also can’t thank my family enough for putting up with me and giving up their Saturday to volunteer. I am thrilled to have an entire year to plan the next one! Any changes for the 2019 conference?
I will be working with parents over the next several months to start formulating the breakout schedule. All of the sessions were well attended, so there may be some repeats. We are looking at the possibility of adding additional sessions bringing a total to 24. Keeping with the idea of It Takes a Village, we want to offer a broad range of trainings on different topics. I hope to have the Adults on the Spectrum panel discussion as well; I think that was especially interesting. I hope to expand the stage entertainment in 2019, so I will be looking for those talented folks out there! I am also contemplating an art gallery/show of some kind to highlight the talented artists in our community, but that is very much a work in progress and I am open to suggestions! How can Spectrum Life Magazine readers reach you and WAAA if they want more information about your organization and the services you provide? Anyone interested in volunteering in the planning of the 2019 It Takes a Village conference, please contact me. I want to hear your voice! Website: www.washingtonautismadvocacy.org Phone: 360.514.8365 Email: firstname.lastname@example.org
I want to keep the diversity of vendors; I think that was one thing that made this conference a little different than many others. If we use the same venue, we have an opportunity to add another 15 - 20 vendors.
Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and content curator for the Spectrum Life website. Karen’s writing has been featured in Been There, Done That, Try This: An Aspie’s Guide to Life on Earth (Jessica Kingsley Publishers, 2014) and Chicken Soup for the Soul: Raising Kids on the Spectrum: 101 Inspirational Stories for Parents of Children with Autism and Asperger’s (2013). Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two sons, Justin and Ryan. She has been married to John for over 25 years and is devoted to promoting a culture of acceptance and empowerment within the autism community. www.spectrumlife.org www.spectrumsmagazine.org
HEALTH + WELLNESS
Ask the Personal Trainer Your Fitness Questions Answered By Ryan Lockard, CSCS, CFNS
Question: In addition to being autistic, my loved one also has challenges with stress and depression and finds it hard to be active or leave the house when feeling down. How can I help encourage exercise? Are there some exercises which are better than others for helping reduce stress or negative feelings? Answer: First, it is important to assure them that they are not alone. According to 2015 statistics from the World Health Organization, roughly 300 million people suffer from depression.
following a plant-based diet? Or that it takes approximately 2,500 gallons of water to produce just one pound of beef? There are several health and environmental reasons why people choose to follow a plant-based diet. However, there are several things that your diet may be missing once you make the switch to becoming vegetarian. Most people only plan to cut out the meat in their diet but forget to plan the rest of their dietary intake. Here is a list of nutrients that are often low or missing in a plant-based diet: 1. Vitamin B12 - It aids in forming neurotransmitters and helps maintain healthy nerve cells and red blood cells but is found in primarily meat products. As a vegetarian or vegan, look at eating foods that are fortified with B12 or supplementing it.
Depression can make you feel isolated and alone, so it is important to stress that this is a mental health issue that millions of others are battling across the world as well. Make sure to seek help from your medical professional to get the care that your loved one needs.
2. Calcium - This is the most common mineral in the human body. It helps with nerve impulse transmission, muscle contraction, hormone secretion, and forming your teeth and bones. Outside of dairy products, calcium can be found in tofu, nuts, legumes, and fortified non-dairy beverages. Some compounds, eaten in a large amount following a plant-based diet, can hinder its absorption.
When battling a mental health disorder, exercise is a common part of the treatment plan. Studies have shown that exercise can help reduce levels of stress, anxiety, and depression; as well as improve mood, self-confidence, and self-esteem. However, there is still much to be discovered and researched in this area.
3. Iodine - Aids in the formation of T3 and T4, two hormones that help increase your body’s metabolic rate. Vegetarian diets tend to have a large amount of soy-based foods, which can compromise thyroid function. Make sure to use iodized salt or supplementation.
The studies that have shown the positive effect of physical activity commonly use aerobic exercise. I would encourage you to find something that you and your loved one could do together. This doesn’t have to mean going to the gym together and taking a spin class with loud music, which can be fun but can also be intimidating for many (not to mention sensory overload). I encourage our clients to take family walks, hikes or bike rides together. This gives you time to enjoy each other’s company and helps facilitate other healthy habits as well.
4. Omega-3 Fatty Acids - Found primarily in fish, it should come as no surprise that an individual following a plant-based diet may be deficient in Omega-3 fatty acids, which are crucial for your body’s overall ability to function. Instead of using a fish oil supplement, look for one that is algae-based in order to prevent chronic disease and help with body composition management.
Getting out of the house due to lack of motivation is often a hurdle that needs to be overcome. The daily family activities should help increase mood and motivation, but you should also create an action plan with your loved one for when they start to feel down. This could be as simple as removing themselves from their current situation and going for a 5-10 minute walk or doing an in-home exercise routine. Whatever it may be, it is easier to follow a plan if it’s already in place than to try and figure out something when the situation arises, which often amplifies their anxiety or depression. Every person is unique and has their own interests and ability levels. Help your loved one find what works for them. And above all, help them remember that they are not alone. Question: I’ve been thinking about becoming a vegetarian. Anything that I need to be aware of? Answer: Did you know that 70% of Americans suffer from ailments related to their diet, which can be improved from
5. Vitamin D - Found in very few foods, sunshine is the best source of receiving adequate amounts of Vitamin D. If you live in a place where the sun goes into hibernation during the winter months, supplementation is crucial. Have a question you’d like answered? Email: Ryan@specialtyathletictraining.com or email@example.com. You may see your question featured in a future issue and on the SpectrumLife.org website! Ryan Lockard is the founder and head trainer of Specialty Athletic Training, a personal training company located in Portland, OR and Vancouver, WA, that specializes in fitness programs for children and adults with special needs. He is a Certified Strength and Conditioning Specialist (NCSA) and Certified Fitness Nutrition Specialist (ISSA). He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.
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Photo courtesy of Mary Rebekah Moore
In each issue of Spectrum Life Magazine, Health and Wellness expert, Ryan Lockard answers reader questions about health, fitness, nutrition and athletic training for youth and adults on the autism spectrum. Additional questions are answered at our SpectrumLife.org website blog.
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Photo courtesy of Dogs for Better Lives
THERAPEUTIC OPTIONS AND RESOURCES
IN THIS SECTION Dogs for Better Lives........................................................................................40 Autism and Psychiatric Diagnoses ...........................................................42 Spectrum Life Resource Directory ...........................................................44 Upcoming Autism Empowerment Events.............................................46
Your Chance for a Better Life
Although it is something she did on a regular basis, Susan was again anticipating feelings of stress and anxiety. When your child has autism, the weekly trip to the grocery store is no small task. However, this week it wouldn’t just be Susan and her son, Luke. Chance, an Autism Assistance Dog, would be with them
as well. Chance has been trained to act as an anchor in the event that Luke bolts, yet he is so much more than that. With Chance by his side, Luke feels more calm and confident. Simply put, with Chance’s help, the shopping trip was better. Life is better. Call to learn how an Autism Assistance Dog can help you.
Serving Oregon and Southwest Washington www.dogsforbetterlives.org
Dogs for Better Lives
Autism Assistance Dogs help local families By John Krejcha Morris Frank and his seeing eye dog Buddy made history in 1928 as the first guide dog team in the United States. In 1996, the first dogs trained specifically to support individuals on the autism spectrum started to appear. In 2016, Dogs for Better Lives (DBL), formerly known as Dogs for the Deaf, started placing Autism Assistance Dogs in Southern Oregon. The program has continued to expand and currently, DBL is placing Autism Assistance Dogs with qualified clients throughout Oregon and Southwest Washington. Recently, Spectrum Life Magazine interviewed Anjanette Wright, Client Service Representative for Dogs for Better Lives to learn more about their organization, their Autism Assistance Dogs, and how families can apply for placement and support.
Tell us the history behind Dogs for Better Lives. Dogs for Better Lives is an award-winning national 501(c)3 nonprofit organization, founded in 1977 by the late Roy G. Kabat. Roy worked with exotic and domestic animals for movies and television and had a small traveling circus. After retiring to the Applegate Valley in southern Oregon, he was contacted by the American Humane Association and their headquarters in Denver, Colorado. A deaf woman in Minnesota had owned a dog that trained itself to let her know when sounds were occurring in her home. As she lost more of her hearing, her dog alerted her to more and more sounds. After her beloved dog died, the woman realized how much she had come to depend on the dog and began a search for someone to train a new dog for her. The American Humane Association initiated experimental work trying to train dogs to help people who were deaf, and they contacted Roy for advice. After spending two weeks in Denver, Roy returned to Oregon and began Dogs for the Deaf. Our first location was outside Jacksonville, Oregon, and then we moved in 1989 to our current 40-acre site at the base of lower Table Rock in Central Point, Oregon. In 2017, Dogs for the Deaf was renamed Dogs for Better Lives to better reflect the types of Assistance Dogs we offer. Do you have a personal connection to someone on the autism spectrum? I have two grandchildren and one nephew who are on the autism spectrum. I raised my grandchildren for three
years until their mother was prepared to take full responsibility. I also supplied childcare for my nephew from birth through the age of five. These children have not only deeply blessed my life but have been a key piece in my ability to work with the clients I do since I am better able to identify with them. What inspired Dogs for Better Lives to create a program serving the autism community? We all know the statistics when it comes to Autism Spectrum Disorder. As an Assistance Dog organization, we realized just as Roy did 40 years ago that we were equipped to meet some of the needs of a child on the spectrum and their family’s needs as well. We have a top-notch training department with a highly skilled staff of certified trainers. In addition, we have a donor base that believes in the mission of Dogs for Better Lives. Our commitment to the Autism Assistance Dog program compelled us to build a new 18,900 square foot, second training facility with 40 kennels and room for four more trainers. Tell us about the Autism Assistance Dogs and what they are trained for. Dogs for Better Lives trains Autism Assistance Dogs for children and families living with autism. This program is geared towards successfully integrating children with autism into daily routines. Autism Assistance Dogs often have a calming effect on the child, increasing the child’s willingness and ability to communicate. Autism Assistance Dogs are trained to act as an anchor, providing a stabilizing force to keep the child out of traffic, bodies of water, and other dangerous situations. They can help to improve social skills and may reduce undesirable behaviors common to children on the autism spectrum. In addition, our Autism Assistance Dogs are trained to work with the parent/guardian and/or caregiver of the child with autism. When the “team” goes out in public, the child with autism is tethered at the wrist to the dog. If the child bolts, the Autism Assistance Dog is trained to sit, thus allowing the handler the ability to protect the child from danger. The handler can also cue the Autism Assistance Dog to sit, allowing the handler the ability to focus on a task that requires them to take their attention off the child. The Autism Assistance Dog is a trained working animal, not a pet. The training program is based on rewarding or playing with the dog every time they work. Consistent practice, patience, and praise are necessary for the dog to succeed. Please remember that our dogs are not trained to be guard dogs. They are friendly, stable dogs that help people with different challenges and provide companionship only. What are some of the benefits of an Autism Assistance Dog? The benefits of an Autism Assistance Dog for a child with Autism Spectrum Disorder include but are not limited to the following:
Dogs for Better Lives, continued from page 40 • Autism Assistance Dogs are trained to apply deep pressure. • Autism Assistance Dogs act as an anchor to reduce or slow a child’s ability to bolt. • Autism Assistance Dogs are a companion solely dedicated to the child. • Autism Assistance Dogs have a calming effect on the child. • Autism Assistance Dogs help the child with the bonding process. The benefits of an Autism Assistance Dog for a caregiver of a child with Autism Spectrum Disorder include but are not limited to the following: • Autism Assistance Dogs bring public awareness. • Autism Assistance Dogs act as an anchor allowing the caregiver to react faster. • Autism Assistance Dogs can have a calming effect on the caregiver. What age range of clients do you place Autism Assistance Dogs with? We accept applications for children with a medical diagnosis of Autism Spectrum Disorder from the ages of 4 to 11-years-old. Autism Assistance Dogs are placed with children from the ages of 5 to 12-years-old. Dogs for Better Lives does not place Autism Assistance Dogs with adults. For an adult seeking an Autism Assistance Dog, we recommend consulting our governing body, Assistance Dogs International at www.assistancedogsinternational.org. Where do you place Autism Assistance Dogs? Currently, Dogs for Better Lives only places our Autism Assistance Dogs in Oregon and in Southwest Washington. We will be gradually expanding this program to incorporate the west coast and will expand from there. The results of this expansion will be that Dogs for Better Lives will place Autism Assistance Dogs nationally, as our Hearing Dog and Program Assistance Dogs are currently placed. What is the application process to request an Autism Assistance Dog? There are several steps to apply for an Autism Assistance Dog, and the first one is to reach out to our Client Services Representative at email@example.com or by calling 541-826-9220. A potential client must meet these basic requirements first: • Child must have a documented Autism Spectrum Disorder diagnosis. • Child’s age at time of application submission: 4 to 11 years old. • Child’s age at time of Autism Dog placement: 5 to 12 years old (maximum).
• Ability to practice obedience and manners with Autism Assistance Dog daily. • Ability to always deal patiently and positively with your Autism Assistance Dog, as well as providing supervised exercise and play time. • Ability to attend and pay for obedience classes and/or hire a private trainer. Once these questions have been resolved, we will walk the potential client through the rest of the application process. What is the cost for services? There is a $50 nonrefundable application fee and a $500 refundable Good Faith Deposit. This deposit can be refunded one year after an Autism Assistance Dog has been placed in the home, and all contractual agreements have been met. The only other costs involved are the care of the dog which includes quality food, vet care, toys and lots of love. Do you have any family anecdotes to share? One success story is Liam and his dog, Dumas. His family shares, “To wake Liam up in the morning, Dumas runs in and jumps and sits on him. Liam laughs and gives him a hug. When Liam gets on the school bus, he says, ‘Dumas sad. Bye Dumas.’ Then when he gets home, he shouts ‘Liam’s dog Dumas’ and then they play with each other. Dumas brings confidence.” On the Dogs for Better Lives website, there is a video about Parker and his Autism Assistance Dog, Ian. Parker was born typically developing. He was meeting all of his developmental milestones. He said “ball”, “mama”, dada” and all those things and then at 15 months old, things changed. Our video shows more how Autism Assistance Dog, Ian, changed Parker’s life forever. What else is important for Spectrum Life Magazine readers to know? I am delighted with the growth of our Autism Assistance Dog program; it is one of the few programs financially accessible for families. I understand firsthand when dealing with Autism Spectrum Disorder, not only is time divided, but so are a family’s funds. I come to work excited each day to know that I am part of an organization that understands these very facts and has a donor base that understands how many people just one Autism Assistance Dog can help. The true reality of the Autism Assistance Dog program is that it does not just change the lives of those holding the leash; it ripples out to the rest of the family, the teachers, the friends, and helps the public to understand and respect those who live with Autism Spectrum Disorder. To visit our website and get more information, please visit www.dogsforbetterlives.org.
• No other dogs in the home. • Child must not have fear of dogs. • Child must not have aggressive/violent behaviors towards others. • Home must have fenced yard (a common use area will not qualify). www.spectrumlife.org www.spectrumsmagazine.org
Autism and Psychiatric Diagnoses Does Your Clinician Understand Autistic Neurology? By Judy Endow, MSW, LCSW At different times during my growing up and even during my adult years, autism wasn’t something people knew much about. I often came in front of mental health professionals. It is important to know that if you go to a mental health professional or take your child to a mental health professional, in all probability you will walk out with a diagnosis of a mental health condition as found in the DSM-5 – otherwise known as the Diagnostic and Statistical Manual of Mental Health Disorders. In my adult life, I obtained a master’s degree in social work. I did clinical work diagnosing and treating people in psychiatric settings. Eventually, I limited my practice to autism. When I worked as a clinician, to give a diagnosis, a checklist description of a particular diagnosis needed to be fulfilled by the patient in order to diagnose a patient with a particular label. Even if I didn’t know for sure if the patient met the criteria for a particular diagnosis, I would need to write in a provisional or working diagnosis for the patient’s medical records. This was necessary for the clinic to be able to receive reimbursement from the medical insurance company. Therefore, when a person receives services from a mental health clinic, that person will wind up with a mental health diagnosis, whether they are told that diagnosis or not, and it will be in their medical records.
Both her teacher and her assistant assured Tywanika that molten space daggers were not real. They were trying to be helpful, but their words did not negate Tywanika’s experience. It was more helpful to gather information from Tywanika about these molten space daggers as she was well able to answer questions. She revealed that the molten space daggers lived in the swing chains and only speared her eyes in the afternoon. What looked like a possible psychiatric problem turned out to be something much different! The molten space daggers phenomena first started on the Monday after the springtime change where clocks are moved ahead an hour. This made Tywanika’s recess time coincide with the sun at a slightly different level in the sky. As the sun rays bounced off the metal chains of the swing, Tywanika’s sensitive sensory system noticed the difference in a way to cause her experience to be that of molten space daggers being thrust into her eyes.
Have you or your child sought out the help of a mental health professional? If so, it may be wise to find out if the particular provider you see has experience working with people who have an autism neurology. This is because what can appear to be a psychiatric symptom can sometimes be more accurately described as a function of autistic thinking. The distinction is important because it drives treatment. Example: Hallucinations need to be treated. Thinking in pictures does not. When a person with autism reports their experience are you quick to negate it only because your own neurology informs you differently? You may not be able to share the experience of an autistic because your own neurology is set up differently, but that doesn’t mean the autistic experience is any less real than your experience! It only means it is different. Case Example: Tywanika, a second grader, was most upset because the swing she loved to use on the playground was shooting molten space daggers into her eyes. The swing only did this during afternoon recess. The swing did not shoot these molten space daggers during morning or lunch recess.
When Tywanika was taken out to the swings an hour earlier and an hour later in the afternoon the problem did not occur. Tywanika could then understand what was happening. It was only a few weeks until the sun had shifted enough that the bright reflection off the swing chains was no longer problematic. NOTE: The above case example is excerpted from my book, Painted Words: Aspects of Autism Translated (Endow, 2013). I take the time to explain this because while I was growing up I have received mental health diagnoses that were not accurate even though I met the criteria to receive each of the diagnoses at the time they were given. For example, when I was a teen, I was asked Continued on next page www.spectrumsmagazine.org
Autism and Psychiatric Diagnoses, continued from page 42 if I heard voices that others don’t hear, etc. The answers to all these questions were “yes.” Because of my autism neurology, even though I hadn’t yet been diagnosed with autism, my sense of sight and sense of hearing delivered much more detailed information to me than was typically experienced by the majority of people. This was a function of my autism neurology rather than indications of schizophrenia. Thus, treatment for schizophrenia was not at all successful. (Endow, 2009)
References: Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press. Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
In conclusion, an autistic person, just like any person, can have comorbid diagnoses. My point in this writing isn’t to negate that reality, but rather to caution that we need mental health diagnosticians and therapy providers who understand autism neurology so as to prevent the errors of assigning unwarranted clinical symptomology when it does not exist. To avoid this, clinicians need to understand the autistic style of thinking along with how our sensory system operates when we take in, process, store and retrieve information from the world around us. The selves we bring to interface with the world around us run on a different operating system. Thinking visually or hearing robustly in an autistic does not, in and of itself, equate to hallucinatory phenomena. We need clinicians who can tease out aspects of the autistic way of being and interfacing with the world from psychiatric symptomology. This is quite important because we can treat psychiatric symptomology such as hallucinations, but it is unnecessary and dangerous to label and to treat the autistic way of being as if it were a psychiatric symptom.
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. Judy can be reached through her website, www.judyendow.com.
PEDIATRIC THERAPY CENTER Supporting Children With Developmental Needs • Occupational Therapy • Physical Therapy • Speech Therapy • Groups & Camps
1815 NW 169th Place • Beaverton www.BOLDPediatrictherapy.com www.spectrumlife.org www.spectrumsmagazine.org
Spectrum Life Magazine serves youth, adults, and families in the autism community. We seek to partner with nonprofit organizations, businesses, support groups, educators and professionals from a variety of fields who desire to support our community in a meaningful way. If you are an autism-friendly provider who desires to connect with new clients, we can help you make those connections through directory listings, advertising and sponsorship opportunities. Please contact John Krejcha, Program Director at firstname.lastname@example.org or call (360) 852-8369. Spectrum Life Magazine and Autism Empowerment do not endorse, promote or guarantee the services or outcome of any one provider or type of therapy.
We currently list over 1,200 autism-friendly service providers from Oregon, Washington and throughout the United States. Some of the directory categories where you are able to search for providers in your region include: Adult Services Advocacy Assessment and Diagnosis Autism-Friendly Businesses Camps Caregiving Chiropractic Dentists Educational Support Employment Assistance Financial Planning Government Agencies Housing Legal Medical Professionals Psychiatrists/Psychologists Recreation Safety Schools Special Needs Trusts Sports and Fitness Support Groups Therapy and Interventions Transportation Travel The SpectrumLife.org website launched in March 2018 and is a continual work in progress. In order for our directory to become stronger and better known, we invite community members to share this valuable resource with their colleagues, friends and family members. Letâ€™s work together to build our community stronger! Thank you for your support! To learn more about our Spectrum Life Resource Directory, please visit and bookmark www.SpectrumLife.org. If you have a resource youâ€™d like to see added, please contact us at email@example.com or through our website.
And THAT ’S WHAT MAKES US dIFFEREnT
Our job is to make your family’s day to day life easier and help your child thrive. We provide center-based ABA and Speech Therapy services to children with autism and other special needs. Because many children with autism have difficulty using words, our collaborative approach of both ABA and Speech Therapy addresses both problem behaviors and communication. Although we provide most of our services at our center, we are passionate about addressing problem behaviors that may be occurring in the child’s home. That is why we offer home coaching sessions to help parents with daily challenges
1509 SW Sunset Blvd # 1A • Portland, OR 97239 (503) 927-1179 • www.lindegardtherapy.com
and ensure that progress made at our center generalizes to the home environment.
ABA and Speech Therapy center-based services for ages 0 to 5 We accept various forms of insurance including OHP www.spectrumsmagazine.org
Upcoming Events • www.AutismEmpowerment.org For a full listing of additional events and gatherings in our community, visit www.SpectrumLife.org and www.AutismEmpowerment.org
MONTHLY - Last Saturday
Thursday, September 20th Give More 24! Online Day of Giving 12:00 am - 11:59 pm
Regal My Way Matinee Sensory Movie 10:30 am showtime, doors open at 10:00 am 7800 NE Fourth Plain Blvd. Vancouver, WA 98662
Give More 24 is an annual day of online giving! Please donate to Autism Empowerment and support Spectrum Life Magazine. For 24 hours, your giving goes further with matching funds and prize pool opportunities! THANKS! www.givemore24.org/organizations/autism-empowerment
OCTOBER Saturday, October 25th Southwest Washington Candidates Forum 6:00 pm - 8:30 pm Clark College - Gaiser Hall 1933 Fort Vancouver Way, Vancouver, WA 98663 Hosted by Clark County Disability Coalition. Come hear local candidates share positions about topics important to the disability community. Free. Saturday, October 27th Autism Empowerment Social and Gaming Event 11:00 am - 3:00 pm Orenco Presbyterian Church 6420 NE Oelrich St., Hillsboro, OR 97124 Email: firstname.lastname@example.org or call 503-330-4789 This is a Boy Scout Eagle Project by Zachary Parrott where kids and adults can learn about autism, and have fun. Free food and drink are provided.
Autism Empowerment and Spectrum Life Magazine appreciate your support: http://bit.ly/aedonate
Call 844-462-7342 ext 433 in advance for movie that will be showing. September 29th, October 27th and November 24th Autism Empowerment offers Support Groups, Social Clubs, Game Nights and Volunteer Service opportunities. Please see our website for dates/times and Facebook group page links. Ongoing Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Neurodiverse & NT) • G.I.R.L.S. Group (Adolescence) • Parents of Tweens/Teens Support Group Ongoing Social Groups: • SW WA Tween and Teen Social Club (11 - 19) Ongoing Service & Volunteerism: • Autism “Rocks” - Rock painting, hiding and collecting (All ages) • Autism Serves Kids Care Club (8 - 18) • Autism Serves - Volunteerism for all ages Connect with us online! /SpectrumLifeMagazine /AutismEmpowerment @SpectrumLifeMag @AutismEmpowermt AutismSpectrumLife
As one of the few schools in Oregon devoted to students with learning differences and the only one focused exclusively on the critical middle school years, Bridges offers its students small class sizes, differentiated instruction, and a safe place to learn and grow. Learn about our unique academic Lea program, our admissions process and important admission deadlines at our Open House on Saturday, October 20, 2018, 10-11AM. You can ďŹ nd us in the heart of downtown Portland at 2510 SW First Avenue, 97201. BridgesMS.org | 503-688-2922
Admission inquiries for the 2019/ 2020 academic year are now being accepted at BridgesMS.org. Space is limited. Preference given to 5th grade applicants. www.spectrumsmagazine.org
As an Independent Apartment Community (IAC), Stephenâ€™s Place offers positive living options for adults with developmental disabilities. fo With forty-one modern apartments, our focus is on community; empowering and enabling each resident to be a productive contributing member of their community.
Call or email us to schedule a tour (360) 984-3600
email@example.com 501 SE Ellsworth Road, Vancouver, WA 98664
Apartment rent is inclusive of all meals, supportive services, nursing & ADL assistance and programming including: Job Skills Training, Placement & Coaching Life Skills Training Ho Horticultural Therapy Group Fitness Classes & Yoga Arts & Crafts Movie Nights Sporting Events Group Outings to Local Attractions Transportation Services We also offer a Day Program to people who live outside of the Stephenâ€™s Place community, but would like to build peer relationships
Learn more about us @ www.stephensplace.org
and participate in activities.
Our Fall 2018 Issue feature articles include: A Note to Start the School Year • Caetextia: The Topsy-Turvy World of Autism • Autism and Mean...
Published on Sep 13, 2018
Our Fall 2018 Issue feature articles include: A Note to Start the School Year • Caetextia: The Topsy-Turvy World of Autism • Autism and Mean...