A GUIDE FOR FAMILIES SUPPORTING INDIVIDUALS WITH DISABILITIES
LIFE AS A LATE-DIAGNOSED AUTISTIC WOMAN
WHAT IF I’M NOT READY TO DATE?
PREPARING YOUR CHILD FOR EMERGENCY HOSPITAL VISITS
PLANNING FOR TODAY & TOMORROW
INCLUDING CHILDREN IN DECISIONS THAT MATTER
SocialMedia Safety
1. Who is going to take care of your child after you are gone and where will they live?
2. How much will that care cost and how are you going to pay for that care?
3. Do you have a special needs trust and do you know how much money you will need in it? How are you going to fund it? How are the funding instruments taxed when you die?
4. What government benefits are available to your child and how do you apply for them?
5. What is the Medicaid waiver and how do you apply for it?
6. How will you communicate your plan to family members?
14 SURVIVOR 48 RUNNER-UP EVA ERICKSON DEMONSTRATES STRENGTHS OF THE AUTISTIC POPULATION
Miriam Edelman, MPA, MSSW
When Eva Erickson became the first openly autistic contestant of the Survivor television series, her success helped boost public understanding of autism.
26 CHANGING SAM’S WORLD BY PLANNING FOR TOMORROW
Gina Mitchell
A mom shares the story of her autistic son and how she has supported him to become the Executive Director of the nonprofit, Autism Rocks and Rolls Corporation.
OUR COVER STORIES
SAFETY GOALS WITH NICOLE
PLANNING FOR TOMORROW: A GUIDE FOR FAMILIES SUPPORTING INDIVIDUALS WITH DISABILITIES
Nicole Moehring
This guide offers essential steps to help ensure your loved one is protected, empowered, and able to live a secure and fulfilling life today and always.
10 IN THE PROCESS: WAYS TO INCLUDE CHILDREN IN DECISIONS THAT MATTER
Rose Adams, OTD, OTR/L
Learn why asking children for their opinion matters and lets them know that their voice has value.
18 TIPS FOR KEEPING EXCEPTIONAL CHILDREN SAFE ON SOCIAL MEDIA
Karen Kaplan, MS
A special educator shares her top tips to help children become better social media users and to stay safe online.
22 JENNIFER'S JAM MY LIFE AS A LATE-DIAGNOSED AUTISTIC WOMAN
Jennifer McAvoy, MEd
An educator explains how she came to learn she is autistic later in life, despite earning multiple degrees and working in the special needs community.
24
EXCEPTIONAL ADVICE FROM MESHELL PREPARING YOUR SPECIAL NEEDS CHILD FOR EMERGENCY HOSPITAL VISITS
Meshell Baylor, MHS
A trip to the emergency room is never fun, but ensuring your exceptional child receives the medical help they need is the most important thing a parent can do.
30 THE BENEFITS OF ADDING A STUDENT PROFILE TO YOUR IEP
Priya Pasumarthy
An overview of how a student profile outlining a learner’s overall progress, academic growth, strengths, supports, interests, achievements, and goals can be attached to key documents.
33 EXCEPTIONAL BOOKS
30-MINUTE LESSONS FOR SMALL GROUP OR CLASSROOM INSTRUCTION
Ginger Healy and Ashley Wright
Learn about an engaging tool that helps students thrive amidst unique family dynamics, such as navigating divorce, single-parenthood, foster care, kinship care, or parental incarceration.
35 REFLECTIONS DOUBLE DIGITS
Bailey Carmack
A proud and loving mom shares a poem about a milestone moment in the life of her exceptional son.
36 THE FRIENDSHIP & DATING DUO WHAT IF I’M NOT READY TO DATE YET? WHY THAT’S NOT A PROBLEM – AND WHAT TO DO INSTEAD
Jeremy and Ilana Hamburgh
Our resident relationship duo explains how friendships use many of the same skills as romantic relationships, and there is no need to rush into dating.
40 THE BENEFITS OF MUSIC FOR THE EXCEPTIONAL CHILD
Meshell Baylor, MHS
A look at how music can be therapeutic to the mind, body, and soul, while also improving children’s cognitive abilities and functioning.
42 SUPERHEROES AND VILLAINS: NATHAN’S STORY
Jennifer McAvoy MEd
A special educator recalls an encounter with a child that left a lasting mark on her heart many years later.
46 ALL THINGS OT SENSORY SHOWDOWN: A FUN WAY TO PREPARE FOR A NEW SENSORY EXPERIENCE
Laura Ryan, OTD, OTR/L
Let’s consider how to prepare for a new sensory experience if you are someone with sensory selectiveness.
48 EMBRACING AUTISM IN CHURCHES: A JOURNEY OF FAITH, GROWTH, AND INCLUSION
Sydney Roberts, MA
An adult on the spectrum shares how finding a community that truly welcomes her as her full self has positively impacted her life.
52 NATURE NOTES THE COLOR WHEEL: A COLORFUL WAY FOR OUTDOOR ENGAGEMENT
Karilyn Rollo, OTD, OTR/L
An overview of the Color Wheel scavenger hunt as a creative activity for structured outdoor play and learning.
56 PARENTING THROUGH THE FOG: EMOTIONAL SURVIVAL TIPS AFTER AN AUTISM DIAGNOSIS
Alyece Smith
A parent shares tips for processing the news and moving forward with hope after your child receives a diagnosis of autism.
60 KATE MAKES IT GREAT TOP ADVICE ON IMPLEMENTING REWARDS, POTTY TRAINING, AND MANAGING SENSORY ISSUES
Kate C. Wilde
A collection of answers to your parenting questions from our resident Q&A columnist.
63 EXCEPTIONAL TOOLS & PRODUCTS PLANNING A VACATION JUST GOT EASIER FOR FAMILIES WHO NEED ACCESSIBILITY
Lorraine Woodward
Learn how short-term rental platform Vrbo has teamed up with Becoming rentABLE, a startup that exclusively lists accessible short-term rentals.
64 MOM GUILT AND MISUNDERSTANDING: THE TOLL OF STIGMA ON MOTHERS OF AUTISTIC TODDLERS
By Tamar Varnai, MA, BCBA, LBA Stigma does not only apply to autistic children, but also to their caretakers. This article examines the impact of stigma on mothers’ mental health.
67 LIFE WITH ASPERGERS CELEBRATIONS AND ME: MANAGING THE HOLIDAYS WITH AUTISM
Julie Day
A writer with Asperger’s reflects on the Holidays of her childhood and offers advice for families to consider over the festive season.
69 REFLECTIONS THE JOURNEY
Gary Shulman, MS Ed
A special educator shares a poem that reflects on the journey of raising a child with exceptional needs.
70 FINANCIAL FOCUS VALUABLE FAQS ABOUT GUARDIANSHIP
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
A financial planner explains Guardianship, presenting different levels that may be needed to protect someone with special needs.
EXCEPTIONAL NEEDS TODAY
Exceptional Needs
Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future.
exceptionalneedstoday.com
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Amy KD Tobik, BA
Founder | CEO Lone Heron Publishing, LLC
Magazine Staff
Editor-in-Chief: Amy KD Tobik, BA
Copy Editor: Emily Ansell Elfer, BA Digital Marketing Coordinator & Social Media: Dione Sabella, MS Graphic Designer: Annie Rutherford, BA IT & Digital Solutions Specialist: Jared Cochran
Professional Consultants
Jeanetta Bryant
Dr. Stephanie C. Holmes, BCCC J. Edwards Holt
Dr. Ronald I. Malcolm, EdD
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Ron Sandison, M Div Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
Exceptional Needs Today is a bimonthly publication produced by Lone Heron Publishing.
Disclaimer: Advertised businesses and products are not endorsed or guaranteed by Exceptional Needs Today, it’s writers or employees. Always follow medical advice from your physician.
From the Editor’s Desk
Planning for Today & Tomorrow
When Exceptional Needs Today was launched five years ago, our goal was to raise awareness, foster acceptance, and promote inclusion for all people. We were determined to reach a broad audience by giving a voice to all: self-advocates, doctors, educators, families, and caregivers. Today, we are proud to be an award-winning magazine featuring a vast collection of writers, including many self-advocates.
No matter what your diagnosis is, life can feel overwhelming at times. Often, there are too many decisions to be made, such as selecting suitable therapies, obtaining solid educational services, and securing a lifetime of support. Sometimes, daily or weekly planning can become demanding and a little confusing.
In this issue, autism advocate Alyece Smith, parent of a neurodiverse child, explains she feels much the same way.. In her piece, Parenting Through the Fog: Emotional Survival Tips After an Autism Diagnosis, she shares her tips for processing and moving forward after a child receives a diagnosis. She encourages families to let themselves feel everything: to cry and grieve while giving themselves grace. As a business coach, autism advocate, and founder of Caiden’s Corner, Alyece provides valuable tips for individuals with a wide range of diagnoses.
While we all know securing an Individualized Education Program (IEP) during a student’s school year is necessary, Priya Pasumarthy says there is an additional piece that must be included: a student profile. To improve academic growth, read her article, The Benefits of Adding a Student Profile to Your IEP, for an overview of how a student profile can make a significant difference. This profile should highlight a learner’s overall progress, academic growth, strengths, supports, interests, achievements, and goals, and can be attached to key documents. As an educator, Priya notes that the student profile can play a crucial role in promoting motivation, ultimately leading to selfdetermination and autonomy.
Have you struggled to find the right life partner? Jeremy and Ilana Hamburgh, friendship and dating coaches who support autistic and neurodiverse adults in building community, forming friendships, starting to date, and creating meaningful relationships, have written a piece titled What If I’m Not Ready to Date Yet? Why That’s Not a Problem – And What to Do Instead. The relationship duo explains that friendships involve many of the same skills as romantic relationships, and there's no need to rush into dating. The couple encourages building friendships, expanding one's mental library, and developing confidence before entering a romantic relationship. That way, Jeremy and Ilana say, you’ll know who you are, what you want, and what kind of relationship you’re working toward.
While planning for today with a diagnosis can be challenging, planning for tomorrow can feel overwhelming at times.
As a mother of a child with disabilities, Nicole Moehring understands how emotional and overwhelming it can feel to plan. But she also knows how critical it is. Be sure to read her article Planning for Tomorrow: A Comprehensive Guide for Families Supporting Individuals with Disabilities. Her daughter, who is neurotypical and a brave survivor of sexual assault, and her son, who faces challenges from Fragile X Syndrome and autism and has endured repeated instances of sexual abuse and exploitation, are featured on this month’s cover. Nicole recently published Evan and Gillian Say, a series of books and educational resources covering body safety, social skills, and other safety topics designed for people with cognitive, developmental, and intellectual disabilities. Nicole says planning for tomorrow is about creating a future that reflects your loved one’s identity, ensures stability, and offers dignity. It is more than protection, she says, it’s a promise of empowerment and love.
You won’t want to miss Gina Mitchell’s piece, Changing Sam’s World by Planning for Tomorrow. As an autism mother, Gina shares the story of her son and how she has supported him in becoming the Executive Director of the nonprofit, Autism Rocks and Rolls Corporation.
Some additional titles this month include: Survivor 48 Runner Up Eva Erickson Demonstrates Strengths of the Autistic Population, Managing the Holidays with Autism, Tips for Keeping Exceptional Children Safe on Social Media, Preparing Your Special Needs Child for Emergency Hospital Visits, Sensory Showdown: A Fun Way to Prepare for a New Sensory Experience, Embracing Autism in Churches: A Journey of Faith, Growth, and Inclusion, My Life as a Late-
Diagnosed Autistic Woman, Top Advice on Implementing Rewards, Potty Training, and Managing Sensory Issues, plus, so much more.
As always, we thank our contributors, advertisers, and subscribers who continue to support and play an integral part in our magazine. Let's continue to work together to raise awareness, foster acceptance, and promote inclusion.
Best,
Amy KD Tobik
Editor-in-Chief, Exceptional Needs Today
Publisher,
Lone Heron Publishing
We were determined to reach a broad audience by giving a voice to all: self-advocates, doctors, educators, families, and caregivers.
SAFETY GOALS WITH NICOLE
REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY
Planning for Tomorrow: A Guide for Families Supporting Individuals with Disabilities
By Nicole Moehring
For families of individuals with disabilities, planning for the future isn’t just a responsible task; it’s a profound act of love and protection. The needs of a child, sibling, or loved one with a disability extend far beyond daily care. Their long-term quality of life, financial stability, and legal protection must all be thoughtfully considered, especially as parents and guardians age.
As a mother of a child with disabilities, I understand how emotional and overwhelming it can feel to plan. But I also know how critical it is. This guide reflects both my professional experience and my journey as a parent, offering essential steps to help ensure your loved one is protected, empowered, and able to live a secure and fulfilling life today and always.
1. Create a vision for the future
Start by imagining what a meaningful life looks like for your loved one. Where will they live? What kind of support will they need? Who will be part of their care circle? Think about their preferences, dreams, and goals. Include them in these discussions whenever possible—their voice should always be central. A clear, documented vision gently guides the rest of your planning.
2. Identify future caregivers and advocates
If you’re no longer able to care for your loved one, who will? Important steps include:
• Legal Guardianship: Appoint someone who understands your child’s needs and values.
• Power of Attorney (POA): Designate trusted individuals to manage medical and financial decisions if needed.
• Circle of Support: Build a team of siblings, friends, extended family, or professionals who can step in during times of transition.
Have open conversations with these individuals and ensure they’re willing and prepared to take on these roles.
3. Secure financial stability
Financial planning ensures your loved one is cared for without risking their eligibility for government benefits:
• Special Needs Trust (SNT): Allows for funds to support your loved one without affecting SSI (Supplemental Security Income) or Medicaid.
• ABLE Accounts: Tax-advantaged savings accounts for individuals with disabilities that won’t impact benefits up to certain limits.
• Life insurance: A policy can fund a trust or supplement future care costs.
• Letter of Intent: Not legally binding, but essential. It outlines your loved one’s routines, medical needs, preferences, and personal details to guide future caregivers.
Work with a financial advisor or attorney experienced in disability planning to build a secure strategy.
4. Explore housing and living options
Plan for where your loved one will live, considering safety, independence, and happiness:
• Group homes or supported living: These offer varying degrees of independence and support.
• Living with family: Consider whether this is sustainable long-term and what the backup plan is.
• Independent living with support: For those with higher independence but who still need assistance.
Explore local resources early, as housing and services often have long waitlists.
5. Focus on education, employment, and purpose
A fulfilling life includes opportunities to grow, contribute, and connect:
• IEPs and Transition Plans: Start early to prepare for education and job skills after high school.
• Employment services: Look for local agencies that offer job coaching, training, or supported employment.
• Community engagement: Help your loved one build friendships and explore hobbies, advocacy, or volunteer opportunities.
A life filled with connection and purpose is just as vital as physical care.
6. Review and update regularly
Plans must evolve as your loved one grows and life circumstances change.
• Review guardianship, POAs (Power of Attorney), and trusts regularly.
• Update financial and housing plans as needed.
• Refresh the Letter of Intent with new routines, medications, or preferences.
• Communicate changes with the entire care team to ensure continuity.
Final thoughts
Planning for tomorrow is about creating a future that reflects your loved one’s identity, ensures stability, and offers dignity. It is more than protection; it’s a promise of empowerment and love.
Families who plan with intention today provide the most meaningful gift of all: peace of mind and a well-supported life for someone they love deeply.
• Individual Service Plan (ISP): A personalized plan that outlines needed services, supports, and life goals to help the individual live as independently and meaningfully as possible.
Nicole Moehring’s daughter and son, who has autism and Fragile X Syndrome, were both victims of sexual abuse. As a mother suffering through this unbelievable nightmare, Nicole witnessed extreme differences in the justice system in terms of how her daughter was believed and treated so well and how her son was not. In addition, she recognized the distinct differences in recovery, trying to find support and resources. Nicole and her daughter Maci founded Voices of Change 2018 (VOC18), a nonprofit organization, to begin making much-needed change for children with disabilities and their families.
VOC18 is a disability-led national organization piloting our groundbreaking programs in Ohio. Their mission is to reduce the risk of abuse, neglect, and exploitation of children with disabilities. By sharing their lived experiences and through collaborations with law enforcement, mental health, medical professionals, and other similar organizations, they are building a foundation of advocacy, awareness, education, resources, and support for children with disabilities and their families.
Nicole is an author of the “Evan and Gillian Say” series of books and educational resources that cover body safety, social skills, and other topics tailored for individuals with disabilities.
Follow VOC18 on Facebook, Instagram, LinkedIn, and Pinterest: Voices of Change2018
In the Process: Ways to Include Children in Decisions that Matter
By Rose Adams, OTD, OTR/L
Have you ever made plans for a child without them? Well, if you are a parent or someone who cares for young or maybe not-so-young children, the answer is probably, “Yes.” Not to say that there is anything wrong with making decisions for your child without them, but have you wondered what the experience might be like if they were a part of the process? Let’s examine that.
Backstory
As we approached the summer months, we received a packet of summer camp programs that were being offered
in our local school district. In the past, my husband and I would pre-decide which camps we would like to have our twin boys enroll in, and then we would see if they were interested in attending. This year, we took a different approach.
In our home district in upstate New York, numerous shortterm camps are offered throughout the summer, providing children with a variety of activities to choose from. I run a few through my practice as well. I decided to print the long multi-page listing of summer camps and asked our now, almost fifth graders, to select which camp programs
they would be interested in attending. They both decided to cross out the ones that they were not interested in with “red” crayons and mark the ones they were interested in attending in “yellow.” It turns out that they had good ideas and provided us with their reasons for highlighting certain camps and not others. It was interesting to see their choices and hear their perspectives.
Perspective sharing and supporting voice are topics that resonate with me. In previous articles in Exceptional Needs Today, I wrote about promoting voice, giving children the power to choose, and promoting inclusion among children as partners in shared decisions (Adams, 2023; Adams, 2022). In this article, I would like to share three ways that you can include children in decisions that matter. The first is to plan with them, the second is to ask for their input or opinion, and the third is to gather feedback.
Plan
When thinking about decisions that include or directly involve children, consider planning with them. Let them know what you’re thinking, not what you have already decided. When they help you plan the activity or event, you give them an opportunity to be heard (Adams 2023; Adams, 2022; Adams & Levy, 2017). You are inviting them to be a part of the process. They just might have some good ideas or insight that you may not have thought of. Can you think of ways that you can incorporate children in planning a new or upcoming activity?
Ask
Asking children for their opinion lets them know that their voice matters (Adams 2022). It tells them that what they have to say has value and it means something. There may be different ways to get children’s input. Consider their individual differences, strengths, and unique ways of communicating (Adams & Levy, 2017) and meet them where they are. Get ready to hear endless possibilities! You may want to break the asking up into a few short moments or over several days. We don’t want the asking to feel like a task or burden to them. Instead, the asking should feel more like an opportunity to share their input.
Here's an example. Our boys have been taking music lessons for over a year. David plays the drums and Joseph plays piano. I noticed that they started to experience what I call, rehearsal or lesson fatigue. It became a drag getting them out of the house to attend their music lessons. So, I asked them if they wanted to stop music for a while and do something else instead. They both eagerly said, “Yes.” The boys wanted to be involved in more physical activities this summer and return to music lessons in the fall.
David is now interested in soccer, and Joseph wants to give basketball a try. But before we signed off, David participated in his third drum recital and performed wonderfully. Joseph decided to sit this recital out, as he didn’t feel ready. If you want tips on how to help your child or children in your care conquer anxiety before musical performances, check out my Recital Ready article in issue 18 of Exceptional Needs Today (Adams, 2024).
Feedback
Lastly, we want to give children the opportunity to provide feedback. Not only after the event but also throughout the process. Feedback is another way to promote voice (Adams 2022), especially when considering decisions that involve them. But here’s the thing, when we give children an opportunity to be a part of the process when making decisions, we need to be prepared to receive their unique perspectives and feedback; no matter how it comes (Adams, 2022).
Recently, I was working on a door sign at the computer for my new administrative office. Yes, we’re moving on up! My practice is expanding to meet the needs of more children and their families. My son David happened to be walking by and said, “Mom, what are you working on?” I told him that I was working on a sign for my door. As I was preparing to send my sign to the cart to purchase it, he said, “I don’t like that font.” I asked him, “Why not?” I mean, I liked it, I thought it looked great. He said it looked too small and
would be hard to see at a distance. So, I showed him the available fonts that the company offered for my sign. He found one he liked and gave me a choice between two options. I ended up choosing the one that he liked best, and guess what? When my sign came in, he was right. It looked perfect and was easily visible from a distance. Thanks David! I’m glad I accepted his feedback regardless of how I felt about it in the moment. Can you think of a time when you encouraged feedback? How did that go?
Takeaway
When we plan or make decisions with children, we have an opportunity to receive a unique perspective. With that perspective comes feedback; honest feedback, holds value, and reflects their voice in the process. Take a moment to consider how you can include a child today in the process of making decisions that matter.
References
Adams, R. (2024, October). Recital ready: Helping children conquer anxiety before musical performances. Exceptional Needs Today, 18, 64-66. https:// issuu.com/exceptionalneedstoday/docs/issue_18_final_pages
Adams, R. (2023, March). Parents as partners: Promoting collaboration between home and school. Exceptional Needs Today, 12, 10-13. https:// issuu.com/exceptionalneedstoday/docs/ent_issue_12_final
Adams, R. (2022, July). Giving kids a voice: Promoting early self-advocacy among children with disabilities. Exceptional Needs Today, 9, 18-21. https://issuu.com/exceptionalneedstoday/docs/ent_issue_9
Adams, R.C., & Levy, S. E. (2017). Shared decision-making and children with disabilities: Pathways to consensus. Pediatrics, 139 (6), https://doi. org/10.1542/peds.2017-0956
Rose Adams, OTD, OTR/L, is an occupational therapy practitioner with a clinical focus in pediatrics. She works with children and families of children on the autism spectrum, multiple disabilities, and other neurodiverse needs. Dr. Adams has worked in schools, private practice settings, and community-based programs. She is the executive director at Changing Lives Occupational Therapy, P.C., and currently works as a consultant for a local school district in New York. Dr. Adams is a graduate of Boston University’s Post Professional Occupational Therapy Doctorate (PP-OTD) program. Her doctoral project focused on using song-based interventions to support young children with autism and related disabilities participating in school-based occupations. When she is not working, she enjoys writing, baking, singing, and sharing time exploring the outdoors with her school-aged twin boys.
Survivor 48 Runner-Up Eva Erickson Demonstrates Strengths of the Autistic Population
By Miriam Edelman, MPA, MSSW
Eva Erickson, who is 24 years old, became the first openly autistic contestant of the long-running Survivor television series in early 2025. Her success on Survivor shows how everyone can benefit when autistic people are accepted.
Psychology Today reports that watching members of minority groups on television can decrease prejudice. According to a study on Group Processes & Intergroup Relations, “entertainment” methods were more effective in reducing negative bias than traditional prejudice-reduction techniques, which had no effect. Autism-related television shows, in particular, can improve public perception about
autism. A study reported that, compared to viewing a speech about autism, watching one episode of The Good Doctor about an autistic doctor led to “more accurate knowledge, more positive characteristics associated with autism spectrum disorder (ASD), fewer negative characteristics associated with ASD, and a greater desire to learn more about ASD.”
In May 2000, Survivor premiered in the U.S. In this TV show, contestants compete in groups and then individually. Players vote each other out, many times lying to and betraying others, including close allies. In a People magazine article from 2017, Stephen Fishbach, the runner
up on Survivor: Tocantins, wrote: “You can never “trust” somebody 100% in Survivor. It’s a zero-sum game for a million dollars. But you can trust many people to act in their perceived best interest.” Thus, it may be very difficult to find others who will always be loyal.
Eva’s participation in Survivor
Minnesota-native Eva received an autism diagnosis at age one. She thinks that beginning hockey at six years old was beneficial. She graduated from Georgia Tech, where she was the first female to play on the school’s men’s hockey team. She won in her team’s Survivor drinking game. She is now a PhD student at the Brown University School of Engineering.
According to Survivor Executive Producer and host Jeff Probst, Eva was not chosen for Survivor because she is autistic. As he said, “[w]e put Eva on because we liked Eva as a person who happened to have autism, not because she had autism.”
Eva succeeded on Survivor, winning an immunity challenge and earning multiple advantages. Advantages included a hidden immunity idol, Safety Without Power, and an individual immunity challenge advantage. She did not need the first two advantages. Eva played her immunity idol on herself at the last tribal council she could. As she did not receive any votes, her idol may not have helped her. According to Survivingtribal.com, She did not even play Safety Without Power because securing the safety of her team was more important than getting her own safety.
Eva was helped by her strong alliance with her initial Lagi tribemate Joe, a 45-year old fire captain. In the game, Joe valued loyalty and trust. Joe’s initial talking about being a father led Eva to disclose her autism to him and to tell him how he could help her.
On the show, Eva also seemed to have autism-related issues. Sometimes, she gets extremely overstimulated and loses control. In each televised struggle, her competition helped her, showing the community assisting autistic people.
In the episode after a tribe swap put Eva and Joe on separate tribes, Eva struggled with a table maze, the last part of an immunity competition. She knew that if she failed, someone from her tribe would be voted out. She had trouble navigating a ball through the maze, getting stressed. However, she persevered and kept her group from losing. Her team congratulated her, she cried, and her team tried to comfort her as Joe watched from the side. Although tribes are usually separated, Jeff allowed Joe to help Eva. Joe used Eva’s technique to calm her, exposing their alliance with the potential of hurting their games. According to Autisticana.
org, many viewers were touched, with some writing: “Eva and Joe give me hope for the world” and “My kids are watching. I’d want someone to treat my daughter that way.”
After calming down, Eva disclosed her autism to every remaining contestant. She said: "I've never viewed my autism as a roadblock to success. It's not something to work around. It's just part of who I am. There's nothing bad about it." She added: "Everyone who has autism should not be ashamed to ask for help and ashamed to receive it."
The other Survivor players accepted Eva. Fans of Survivor would know that some Survivor 48 players acted in exceptionally supportive ways to Eva. As Eva said in a midseason interview with ew.com, “Everybody cared about me and they respected me enough to learn my story, and it was the best response I've ever received.” This reaction contrasts to other times in her life, when no one understood her and some even threatened to call the police.
Eva made it far through her social game, creating gamebenefiting relationships. Going on all but one of the chosen food rewards probably lifted Eva’s spirits and sustained her.
To make the final tribal council, Eva was forced to compete in a do-or-die fire-making challenge. Although Eva had practiced fire-making before going on Survivor, she got stressed while preparing for the challenge. According to an ew.com post-game interview, Survivor did not show Eva’s most severe autism-related reactions while preparing for the fire competition. Survivor showed her breaking down and crying, but did not show her stimming, scratching herself, or rocking in a ball on the ground. Eva said: “I was almost disappointed this wasn't shown because I know it's important for people with autism to see me in that state.” Eva got help from competitors but declined Joe’s and Kyl’s offer of their spots in the final tribal council.
During the fire competition, Eva made a fire. However, her fire got smaller, causing Eva to panic. Survivor’s three remaining contestants, including Kamilla (her opponent in the fire competition), supported Eva. Eva got a fire going again and won.
In the final tribal council, although Survivor has only one winner, Joe and Eva said they would not disparage each other. Ultimately, Eva was the runner-up to Kyl, earning two votes.
Positive feedback from the public about Eva includes:
• "I say this without reservation as an autistic person: Eva was the best autistic representation in television history. Because she is a real person, flaws and all. She’s not some scripted savant on a police or medical
drama who can solve the case every week with her autistic super brain."
• "As an autistic person myself, Eva was the representation I didn’t know I needed. It was so inspiring to see her up there competing and WINNING in the middle of meltdowns and doing so well in the game despite having a disability that pretty significantly impacts [the] ability to play Survivor. She gave me confidence in myself, knowledge that I can do hard things. I am forever grateful to her for competing this season and sharing her story with the world."
• "It meant so much to me as a single mom to an autistic son. The meltdowns… made me want to save clips to show family members so they could understand what it’s like."
The importance of awareness
Although Eva did not go on Survivor to talk about autism, she recognized, in a post-game interview, the importance of her platform to help autistic people:
“If anyone can connect to part of my story, or can see themselves, see their child, it helps them learn and grow and understand autism better. It helps the community. The world has a lot of misconceptions about autism right now, and it is so important for people like me to share my story so that we can clear those up and help open this conversation and recognize that autism is not something wrong with you, but it is something that is special and unique, and it makes you who you are. It might give you
challenges that are different than other people, but it also gives you strength. And I am so glad that I get to use my platform to spread this message.”
Eva’s appearance on Survivor seems to have benefited the autistic community. As she said in a post-show ew.com interview, “Having just an infinite amount of messages from kids, from adults, from parents of kids with autism, so many people that are now recognizing how special and amazing they are for their autism instead of seeing it as a bad thing in their life.”
Eva and many of her competitors continue their relationships, participating in multiple group chats and meeting each other’s relatives. In a parade.com post-game interview, Joe said: “She [Eva] will always be a part of my life and my family's life. I love that girl, and I always will.” In another such ew.com interview, Eva said: “Very soon I'll get to meet his [Joe’s] kids and that it's just the first of many, many times that we will have together because we are bonded for life.”
Summing up
Survivor 48 exposes some fans to autism. Through the show, they can see that autism is something not horrible. When they see an autistic person in real life, they can be accepting.
Eva’s success on Survivor highlights the benefits of accepting autistic people. Autistic individuals can thrive when given a chance and truly accepted for who they are. The community also benefits. Survivor 48 is a microcosm of the better world that could exist by being inclusive of autistic people.
References
Benutty, John. “‘Survivor 48’ finale recap: Did Eva, Joe, Kamilla, Kyle, or Mitch win the $1 million prize?” Gold Derby, 2025. https://www.goldderby.com/article/2025/ survivor-48-finale-recap-eva-joe-kamilla-kyle-mitch-win/. Accessed 10 June, 2025.
Bloom, Mike. “‘Survivor 48’ Finalist Joe Hunter Reacts to His Surprising Loss: ‘It All Falls on Me’ (Exclusive): The fire captain also gets into the fan response to his pursuit of playing a loyal, group-based game.” Parade, 2025. https://parade.com/ tv/joe-hunter-survivor-48-runner-up-finale-interview. Accessed 10 June, 2025.
Bloom, Mike. “‘Survivor 48’ Runner-Up Eva Erickson Reveals Her Firemaking Autism ‘Episode’ Was Actually ‘Much, Much Worse’ (Exclusive): The runner-up also says she expected the jury votes to be tied at the final Tribal Council.” Parade, 2025. https://parade.com/tv/eva-erickson-survivor-48-runner-up-finale-interview. Accessed 10 June, 2025.
Caruso, Nick. “Survivor 48 Finale Recap: And the Winner Is…” TV Line, 2025. https://tvline.com/recaps/survivor-48-finale-recap-kyle-wins-1235452272/. Accessed 10 June, 2025.
“CBS'S SURVIVOR - SEASON 48 CONTESTANT PARTNERING WITH MINNESOTA SPECIAL HOCKEY.” Minnesota Special Holiday, 2025. https://www. mnspecialhockey.org/survivor48eva. Accessed 10 June, 2025.
“Eva: As a father in an Autistic family, thank you.” reddit, 2025. https://www.reddit. com/r/survivor/comments/1kvut8a/eva_as_a_father_in_an_autistic_family_ thank_you/. Accessed 10 June, 2025.
“Eva Confides To Joe About Her Autism | Survivor 48.” YouTube, 2025. https:// www.youtube.com/watch?v=4Dye4V71l3s. Accessed 11 June, 2025.
Ferguson, Carolyn. “Survivor Season 48 Might Be The Most Honest Reflection Of Modern Masculinity Yet: A game that was once about back-stabbing and blindsides has changed yet again.” EVIE Magazine, 2025. https://www. eviemagazine.com/post/survivor-season-48-might-be-the-most-honestreflection-of-modern-masculinity-yet. Accessed 10 June, 2025.
Fishbach, Stephen. “Stephen Fishbach's 'Survivor' Blog: Why You Can Never 'Trust' Somebody 100 Percent in the Game.” Parade, 2017. https://people.com/ tv/survivor-why-you-can-never-trust-somebody-100-percent/. Accessed 10 June, 2025.
Hasnain, Samawiyah. “Who was eliminated from Survivor season 48 after the tribe swap? Details explored.” Soapcentral, 2025. https://www.soapcentral.com/ shows/who-eliminated-survivor-season-48-tribe-swap-details-explored. Accessed 10 June, 2025.
James, Beth. “Surviving and thriving.” Brown University School of Engineering, 2025. https://engineering.brown.edu/news/2025-02-25/erickson-survivor Accessed 10 June, 2025.
Jern, Ph.D., Alan. “Why TV Is One of the Most Influential Forms of Pop Culture: What we watch on the screen shapes our attitudes and values. Psychology Today, 2021. https://www.psychologytoday.com/us/blog/overthinking-tv/202105/whytv-is-one-of-the-most-influential-forms-of-pop-culture?msockid=2bfee900558367 cd3b6dfaff5481661a. Accessed 10 June, 2025.
Murrar, Sohad, and Brauer, Markus. “Entertainment-education effectively reduces prejudice.” Group Process & Intergroup Relations, vol. 29(7), 2018, pp. 1053-1077. Sage, https://www.ispu.org/wp-content/uploads/2020/04/MurrarBrauer2018.pdf Nelson, Elise and Shilliday, Beth. “Who Is Joe Hunter? Meet the Survivor Season
48 Contestant: His Age, Job and More. In Touch Weekly, 2025. https://www. intouchweekly.com/posts/who-is-joe-hunter-meet-the-survivor-season-48contestant/. Accessed 10 June, 2025.
Olin, Bryce. “Eva Erickson explains her Final Six strategy in Survivor 48: 'It should be pretty cut and dry': Eva Erickson is aiming to take her alliance to the Final Four by picking off Mitch Guerra and Kamilla Karthigesu in Survivor 48.” Surviving Tribal, 2025. https://survivingtribal.com/eva-erickson-explains-final-six-strategysurvivor-48. Accessed 10 June, 2025.
“On Fire with Jeff Probst Podcast: State Your Case | Survivor 48 Episode #13 Finale.” YouTube, 2025. https://www.youtube.com/watch?v=ENqffWgkQOs. Accessed 10 June, 2025.
Raihala, Ross. “Eagan native Eva Erickson talks about competing on ‘Survivor,’ revealing autism: She applied to be on the show to impress her ‘Survivor’-loving boyfriend.” Pioneer Press, 2025. https://www.twincities.com/2025/05/22/eagannative-eva-erickson-talks-about-competing-on-survivor-revealing-autism/ Accessed 10 June, 2025.
Ross, Dalton. “'He is my superhero': Eva and Joe go deep in exclusive Survivor 48 joint interview: "She will always be with me in my family — always, no matter what." Entertainment Weekly, 2025. https://ew.com/eva-joe-survivor-48-exclusivejoint-interview-he-is-my-superhero-11704014. Accessed 10 June, 2025.
Ross, Dalton. “Survivor 48 star Eva Erickson says finale autism episode was much worse than what was shown on TV: "I was stimming, I was scratching myself, I was on the ground rocking in a ball, and I was almost disappointed this wasn't shown because I know it's important for people with autism to see me in that state."” Entertainment Weekly, 2025. https://ew.com/survivor-48-eva-erickson-finaleautism-episode-interview-11739635. Accessed 10 June, 2025.
Russian, Ale and Pomarico, N. “Where Can I Watch Survivor? A Complete Guide to Streaming the Competition Series Ahead of the Season 48 Finale: The 'Survivor 48' season finale airs on May 21.” Parade, 2025. https://people.com/survivor-whereto-watch-11738569. Accessed 10 June, 2025.
Scottweisbrot1317. “Eva Erickson from Survivor 48 as she told the Story about her Autism.” autisticana, 2025. https://autisticana.org/2025/05/01/eva-erickson-fromsurvivor-48-as-she-told-the-story-about-her-autism/. Accessed 10 June, 2025.
Shilliday, Beth. “Why Did Star Give Eva Her Immunity Idol on ‘Survivor’ 48? Fan Theories and Speculation.” In Touch Weekly, 2025. https://www.intouchweekly. com/posts/why-did-star-give-eva-her-immunity-idol-on-survivor-48-fan-theories/ Accessed 10 June, 2025.
Stern, Stephanie C. & Barnes, Jennifer L. “Brief Report: Does Watching The Good Doctor Affect Knowledge of and Attitudes Toward Autism?” Journal of Autism and Developmental Disorders, vo. 49, 02 February 2019, pp. 2581-2588. Springer Nature, https://link.springer.com/article/10.1007/s10803-019-03911-7
“Survivor 48 Finale: | Final Tribal Council | Part 1.” YouTube, 2025. https://www. youtube.com/watch?v=g6l-cgF5-Fk. Accessed 10 June, 2025.
“Survivor 48 - Jeff Probst Gets Emotional as Eva Opens Up.” YouTube, 2025. https://www.youtube.com/watch?v=CbgXyK9CHZ0. Accessed 10 June, 2025.
“'Survivor': Joe & Eva EMOTIONALLY Reflect On Scene That Had Jeff Probst In Tears.” YouTube, 2025. https://www.youtube.com/watch?v=yt722WGF4t8 Accessed 10 June, 2025.
“Survivor 48 Finale: Kamilla & Eva Practice Fire-Making | Day 25.” YouTube, 2025. https://www.youtube.com/watch?v=SB8guNVeZdI. Accessed 10 June, 2025.
Worthy, Giovanna. “How one mistake could cost Survivor 48's Eva Erickson $1 million: Will Safety Without Power prove to be a blessing or a curse?” Surviving Tribal, 2025. https://survivingtribal.com/how-one-mistake-could-cost-survivor-48eva-erickson-1-million. Accessed 10 June, 2025.
Miriam Edelman, MPA, MSSW, is a Washington, D.C.,-based policy professional. Her experience includes policy work for both the Senate and House of Representatives. Miriam’s undergraduate degree is from Barnard College, Columbia University, with majors in political science and urban studies and a concentration in history. She has a master’s in public administration from Cornell University, where she was inducted into Pi Alpha, the national honorary society for public administration, and was awarded the Cornell-wide Distinguished Leadership Award. She also has a master’s of science in social work (focusing on policy) from Columbia University. She is a commissioner on the DC Commission on Persons with Disabilities. Miriam aims to continue her career in public service. She is especially interested in democracy, civic education, District of Columbia autonomy, diversity, health policy, women’s issues, and disabilities. LINKEDIN https://www.linkedin.com/in/miriamgedelman
Tips for Keeping Exceptional Children Safe on Social Media
By Karen Kaplan, MS
Just the other day, I was enjoying a conversation with a friend who opened my eyes to how social media can lead to tragedy for parents.
His story
Two days after Christmas in 2020, a friend of mine lost his son. His son died at age 17 due to fentanyl poisoning. My friend said his son was a great student, loved to run track, and enjoyed playing musical instruments. It appears that he and some friends thought they were buying some Percocet pills through social media to help manage pain, but they were counterfeit and contained illicit fentanyl. Later, they found out there was no Percocet in the pills at all.
Sadly, after watching a Christmas film with family, his son went to bed and died alone in his room. My friend found him, and despite every emergency intervention tried, he could not be brought back. My friend was distraught and continues to live with this tremendous loss.
Fentanyl is lethal in amounts as small as two or three grains of salt and is up to 50 times stronger than heroin and 100 times stronger than morphine.
Technology is pervasive in our lives and benefits typical children and those with neurodiversity in many ways. But social media apps also introduce the risk of cyberbullying, exposure to inappropriate
material, access to interactions with online predators, and exploitation because of revealing too much personal information. These are concepts that children, teens, and adults who are neurotypical or neurodiverse may have difficulty understanding.
So, what can parents do?
• Foster a safe place with children where anything can be addressed in a respectful way, and teach them that almost all problems have a solution.
• Teach children not to share personal information on social media and explain what that includes.
• Learn how to best use parental controls to block harmful content.
• Start early to set time limits for screen time. Help children become better social media users by using the “Grandma rule.” In other words, do not post anything on social media your grandmother would not like. Also do not believe everything you read. To post anything, there should be two mandatory requirements to your posts:
• Be truthful
• Be kind
• Empower children to use blocking and reporting tools.
• Tell them to keep posts private for people they know only and check privacy settings frequently with them.
• Teach them to be careful about what is shared online.
• Teach them to avoid adding strangers to their friend lists.
• Forbid a cellphone or other devices in their bedroom after bedtime. Predators know this is when teens are most vulnerable and reachable.
• Remind them that online posts may stay posted for years.
• Stay aware and respectful while monitoring your children’s online activity.
Signs your child’s social media use might be causing problems:
• It interferes with their daily routines and commitments, such as school, work, friendships, and extracurricular activities.
• They might often choose social media over in-person social interactions.
• They may not ask anyone if the information they see online is correct.
• It might prevent them from getting at least eight hours of quality sleep each night.
• It could prevent them from engaging in regular physical activity.
• They may keep using social media even when they express a desire to stop.
• They could experience cravings to check social media.
• They may lie or use deception to spend time online.
Help children become better social media users by using the “Grandma rule.” In other words, do not post anything on social media your grandmother would not like.
Additional tips and knowledge:
Online safety may be an issue for students with disabilities. Students may unknowingly communicate with dangerous people who want to abuse their trust and cause them harm. Social media is part of the only industry that is unregulated and doesn’t need a license to operate. Social media is also part of the only industry that has a federal statute that shields it from civil and criminal liability. This statute is called the Communications Decency Act, statute 230c.
Children’s privacy can be compromised, and predators exploit this unique open market without fear of accountability. The student may give out information without realizing the danger. Someone may pretend to be their "friend" on social media and gain access to private information like their address, passwords, social security number, etc.
Some students may become addicted to social media, which can be bad for schoolwork, family life, and in-person social interaction.
While communication skills can be improved through social media, students who use social media too much may lose the in-person communication skills they need to use in their community, school, or work. They may forget to get real research and information from real people.
The individual may post inappropriate content like pornography, threats, or misinformation that could get them in trouble, including being banned from social media or reported to law enforcement.
Remember, cyberbullying is a real danger, too. According to a study by the Ruderman Family Foundation of 24,000 Boston area high school students, students with disabilities are almost twice as likely to be victims and more than oneand-a-half times more likely to be perpetrators of social media cyberbullying than students without disabilities. More than 20% of students with disabilities reported being victims of cyberbullying. Cyberbullying can lead to depression as well.
SAFETY STRATEGIES
The individual may deliberately or unknowingly bully others through hurtful messages or photos. In addition to depression, individuals who are cyberbullied may exhibit other physical symptoms like anxiety, headaches, stomachaches, fatigue, changed eating habits, poor grades, poor concentration, and loneliness.
What can you do?
• Keep an open line of communication with about what they are doing. Teach them to check and re-check information.
• Perhaps keep the computer in the family room or other public space where you can monitor online activities.
• Have them share their online ID and passwords as a condition of using social media, but to never share that information with anyone else.
• Help them understand what is ok to share online, including types of posts and pictures.
• Again, remind them that, once something is online, it is often there forever, and what they think are private posts can become public.
• Tell them to be careful to not to hurt others, and to be kind, helpful, and accepting of others.
• Consider parental controls on the devices they use so you can track their activities. One content monitoring program is called Bark. To learn more details, visit: https://www.bark.us/
• Make sure they have opportunities to interact in person so they can improve their social skills.
• You may also need to understand how the sites they choose work, their features, and options for privacy.
• Remember to be alert to signs that your child is being cyberbullied or is bullying someone else, and take appropriate action.
• Teach them that items bought online may be fake,
dangerous, not labeled truthfully, and could cause a fatality.
Final wisdom from my friend:
“We can choose to use our pain to build a fortress, to hide from the world, or we can use our pain to be a fuel for change.” My friend is fuel for change. He is often asked to speak to students and cadets to build awareness. He gladly accepts those invitations, knowing that he might just be able to save a life.
My friend also hands out cards labeled "One Pill Can Kill." These cards can fit in a wallet and have a list of emergency resources on the back:
• Crisis Hotline: Text 741741 for 24/7 help
• Crisis Chat: Crisischat.org
• Suicide Crisis Line: Dial 988 or 800-852-8336
• Say Something: Saysomething.net or Dial 844-572-9669
• Domestic Violence Hotline: Dial 714-935-7956
Consider making cards for your son or daughter to remind them of the dangers of medications and the potential for exploitation by others. You might post them on the refrigerator or bulletin board in their room
References
Online safety for teens and adults with autism: sarrc-online-safetymanual_3-e.pdf
Learning Disabilities, Autism & Internet Safety: Internet-Safety-web-2016.pdf
Stephen’s Place: 5 Internet Safety Tips to Protect Your Child with Special Needs
Bradley Ramsey, MS. Drug Education and Awareness. Amazon.com
Bradley Ramsey, MS. Teen Drug Education and Awareness Program. 9781515177012: Amazon.com
Super Gretchen. What Are Drugs? (A Drug-Free Kids Book): Super, Gretchen, Sims, Blanche: 9780816723645: Amazon.com
Paris Stephanie. Straight Talk: Drugs and Alcohol (TIME FOR KIDS® Nonfiction Readers): 9781433348594: Amazon.com
Karen Kaplan, MS, is a native San Franciscan. She completed her bachelor’s and master’s degrees in speech pathology and audiology at Arizona State University, Tempe, Arizona. She minored in special education and obtained her speech therapist and special education credentials in California. Karen worked as a speech therapist for schools for 20 years before opening her own residential and education program for students with autism. She worked in credential programs at Sacramento State University as well as UC Davis and spent 20 years directing private schools for those with autism and similar learning challenges.
Karen founded a non-profit, Offerings, which helps cultures globally to understand those with developmental challenges. For seven years, she founded and facilitated an autism lecture series and resource fair in Northern California. Karen still facilitates an annual Autism Awesomeness event. She is currently consulting and helping families, schools, and centers for children, teens, and adults. Karen has authored three books: Reach Me Teach Me: A Public School Program for the Autistic Child; A Handbook for Teachers and Administrators, On the Yellow Brick Road: My Search for Home and Hope for the Child with Autism, and Typewriting to Heaven…and Back: Conversations with My Dad on Death, Afterlife and Living (which is not about autism but about having important conversations with those we love).
�� karenkaplanasd.com
HJENNIFER'S JAM
My Life as a Late-Diagnosed Autistic Woman
By Jennifer McAvoy, MEd
ow does a woman, a professional, with multiple degrees, one day learn she is autistic? To add another layer to this narrative, this professional has nearly 25 years of experience providing support services to individuals with autism. Her degrees are all centered on education and behavior analysis. So, how does someone with this wealth of experience not have the self-awareness to identify herself as autistic? The answer, of course, is autism. There are many aspects of autism that I have learned about as an autistic person, but I did not fully comprehend them as a graduate student in applied behavior analysis and education. Included in this list is the hard fact that my body and I have a serious communication breakdown. Hunger? I am not aware until starvation is on the horizon. Thirsty? I realize when my teeth stick to my lips from the desert-like conditions in my mouth. Tired? I get no sleep until I reach exhaustion. Need to use the bathroom? I am not aware of the need until it becomes urgent. Learning concepts like “poor interoceptive awareness” doesn’t seem to really capture elements like the “hanger” I experience after not eating for lengthy periods. It is alarming how terrible one can begin to feel when basic survival needs are just not on one's radar.
What I find so ironic (in a way) is that what I fail to sense about my internal world, I can definitely pick up on in my external environment. I can provide in-depth reports about the flooring in various businesses I frequent. I even have a mental list of what shoes can be worn to what locations based on floor-to-shoe compatibility. I have a personal rating system for the sensory load (or overload) of the local establishments I frequent (or avoid).
Here’s a little irony again: my ability to notice such detail in external environments completely fails me in social settings. The subtitles I notice in the physical environment, I miss
entirely in body language and facial expressions. It is as if I am wearing finely tuned glasses for the physical setting, and foggy goggles for the social one. This has created a huge social barrier that has led to a lifelong struggle with making and maintaining friendships.
Perhaps all healing journeys begin with an unmasking and a call to love oneself. I am starting mine there.
How did the woman with a floor-to-shoe compatibility equation not get diagnosed? While it is clear that selfawareness was a significant factor, there is also the notion that autism presents differently across genders. As a female born in 1979, at the time of my childhood, there was not much awareness among the medical community of the different presentations of autism in boys vs. girls. As I aged, I began to mimic others and their applications of social norms. This mimicking of social norms is often referred to as “masking.” I engaged in behaviors I found irrelevant, solely because I didn't want to stand out from the crowd. This masking aided me in blending in (a bit). However, it prevented others from understanding I was struggling.
There were signs, but they were misinterpreted due to the limited understanding of the medical community at the time. I was a “weird kid.” I used to do this thing where I would crawl around the house and rub my nose on the carpet. This was around age six. I hated shopping malls and movie theaters, and I would often protest going. In school, during the passing period, I would often panic, even have meltdowns, and cry.
I prefer my food to lack color, white food feels better. Long live the pierogi. Nothing with syrup, ever as a kid. I hated breakfast. I drank carnation instant breakfast milk and ate toast every day for years because breakfast was my enemy. As previously stated, there were signs.
Becoming “Rain Girl”
I would describe my youth as turbulent, but wonderful. I have the gift of an exceptional family. They could not be expected to understand what the scientific and medical communities had not yet come to understand. I will say my mother was the first to identify my autism, although at the time it was not understood. The first time my family became aware of autism was thanks to Hollywood and the movie Rain Man. This portrayal of autism covers a very narrow piece of the spectrum, but in the 1990s it became a lot of people’s introduction to what autism can look like. In the movie, Dustin Hoffman’s savant character amazes his brother with skills in math and memorization, but the nature of his disability creates barriers to using his skills in a functional way.
Not long after Rain Man was released, my family moved to Arizona. We were house hunting, and my mom was getting the directions horribly confused. She would want to go back to a certain neighborhood, but misremember the specifics and navigate poorly. I was getting silently frustrated until I got loudly frustrated. At one point, I asked, “Mom, are you trying to get back to the house with the fruit wallpaper?” She was. I directed her there flawlessly, through the Phoenix suburbs, to the model home we had viewed early that week (with hideous fruit wallpaper). After demonstrating this navigational skill with the entire metro area we house hunted in, my mom started to call me “Rain Girl.” I was 15 years old at the time; I would not be diagnosed as autistic for another 30 years.
Females with autism present differently compared to males with autism. This is referenced in several pieces of literature, but as I understand it, there are still a lot of gaps in our understanding of gender differences in autism. In large part, this could be attributed to the lack of females in scientific studies. The scientific community, in my opinion, is finally starting to prioritize filling in those gaps in understanding, and in doing so, I was led to my diagnosis.
As a professional in support services, it has not been uncommon for me to read research articles. The Journal
of Applied Behavior Analysis is a personal favorite. It was within this publication that I stumbled upon an article titled “The Experiences of Late-diagnosed Women with Autism Spectrum Conditions; An Investigation of the Female Autism Phenotype.” As a point of reference, this article was published in July 2016. This information was largely unavailable during my childhood and adolescence, when diagnosis is most common. However, the moment I read the article, I knew I was on the autism spectrum. It took some time, but I scheduled a diagnostic assessment. I walked away from that assessment with an enhanced understanding of myself as an autistic adult.
Looking forward
Where does this leave late-diagnosed individuals like myself? For me, it means I am healing. Healing from a lifetime of misunderstanding. That is a lot to take on, but I know I am fully capable. The first step has been learning that the “masking” doesn't have to be 100% of the time. There may be times when blending in is an advantage, but there are also times when I am now learning to stand out. To be weird. To proclaim my oddness as a loved characteristic. Perhaps all healing journeys begin with an unmasking and a call to love oneself. I am starting mine there.
After spending nearly 25 years in the field of support services, I have met some amazing individuals. These individuals have been faced with barriers that words fail to describe. Yet they have triumphed. For many years, I worked to teach needed skills to others. Now in my own learning journey, I look to my former students for their expertise. For more than two decades I have worked with some of the best role models around. I’m pretty lucky.
Jennifer McAvoy, MEd, earned a Master’s Degree in Education from Arizona State University. She has also obtained a graduate-level certificate in Positive Behavior Support from Northern Arizona University. She has spent more than 20 years working to support individuals with unique needs. She has worked as a classroom teacher, behavioral consultant, and clinical liaison. Currently, Jennifer works to assist in the oversight of behavior treatment planning in her home state.
ADVICE FROM MESHELL Preparing Your Special Needs Child for Emergency Hospital Visits
By Meshell Baylor, MHS
S"A
hospital is a place where hope is born.”
eeing your wonderful child sick or hurt is never easy. An exceptional child may find it difficult to express that they are in a state of discomfort or that their stomach hurts. Your parent intuition tells you it is time to take them to the hospital as soon as you suspect they are not acting like their usual, energetic self. You immediately get your child dressed and head to the nearest ER (emergency room).
When you are a parent or caregiver with a special needs child, numerous things can be triggering for a child going to the emergency hospital, such as the following:
• Lighting: Children with specific needs may become glare-sensitive due to the intense lighting in the hospital.
• Noise: In an emergency room, the sound of crying children, people in pain, nurses yelling out patient names, and the intercom paging the doctors over the speaker can be deafening.
• Temperature: The child may find the hospital's temperature too hot or too cold and may be uncomfortable.
• Seating: For a special needs child who dislikes tactile or touch, being crammed into a small seat in a hospital with other people sitting so close may be triggering.
• Long Wait: A child who struggles to remain motionless for extended periods may find it difficult to wait a long time to see the doctor and be treated.
• Check Vital Signs: Exceptional children may find it uncomfortable to be touched or have their temperature taken, blood work, or find going into a CAT scan or MRI machine challenging.
According to the American Academy of Pediatrics, 9.5% of children with developmental disabilities have more frequent visits to the emergency department than their neurotypical peers. This can be due to contributing chronic health factors such as asthma, bronchitis, and other illnesses. As caretakers, we must advocate for our children and their individualized rights to good healthcare treatment when entering a hospital or urgent care facility.
A trip to the emergency room is never fun, but ensuring your exceptional child receives the medical help they need is the most important thing that any caring parent can do.
Keeping your child attentive during a hospital visit may be challenging, so here are some tips for bringing your exceptional child into the hospital.
• Prepare: Prepare your child for a hospital visit and let them know that seeing a doctor is a good thing. Assure them that the nurses and staff are there to help them feel better.
• Note the symptoms: Make sure to jot down your child's symptoms and inform the doctor what their behavior is like when the child is not sick so they will comprehend the change in behavior due to sickness.
• Inform staff: When visiting the hospital or even urgent care, inform staff that your exceptional child has a disability. I write in bold on the top of the hospital paperwork when asked what the reason for my doctor's visit is. I place an ATTN Note: THIS CHILD IS SPECIAL NEEDS. This is to notify staff in case your child does not want to interact with them or needs redirection when taking vitals or meeting with the doctor. You can also ask if the staff has some expertise in working with individuals with disabilities. Some staff members are inclined to answer.
• Bring “goodies”: Emergency visits can take hours, and it can be long before your child's name is called. It is best that you bring your child's favorite play items, such as coloring books, iPads, cell phones, snacks, their favorite teddy bear, or blanket, to make the transition of the wait much smoother.
• Find a quiet place: Hospitals can be loud, filled with extreme lighting, and people sitting close to each other. For a child with exceptional needs, this can be overwhelming. Find a space in the emergency department that is available to hear your child's
name being called, but spaced away from noise and distractions that may trigger the child to have a meltdown. If you cannot find a quiet place, bring sensory headphones to tune out the noise.
• Secure support: Bring support for the child's emergency visit. If you have a supportive care system, ask a friend, family member, or close loved one to accompany you to the hospital for emotional support. It can be challenging when a child must undergo medical checks.
A trip to the emergency room is never fun, but ensuring your exceptional child receives the medical help they need is the most important thing that any caring parent can do. We understand that emergency visits can be time-consuming, but taking steps like ensuring your child's comfort, informing staff, or asking if they are familiar with autism or working with children with disabilities can significantly enhance the visit's accommodations for your child. By the end of the emergency visit, you and your child can go home, rest, and spend the next few days focusing on recovery and family time.
Meshell Baylor, MHS, is a mother of four children—two of whom are on the autism spectrum. She serves her community as a social worker and advocate in the Los Angeles area. She has a Bachelor’s degree in human services from Springfield College and a Master of Science degree in human and social services. Meshell continues volunteering and giving within her local area while serving the special needs community.
�� Center for Autism and Developmental Disabilities
Changing Sam’s World By Planning for Tomorrow
By Gina Mitchell
Iwill be honest here. When my son Sam was diagnosed with autism when he was four, the words and actions that swirled in my head were ones that went beyond confusion. I felt anger and a sense of unfairness. I asked what I’d done wrong, I cried, and I eventually succumbed to curling into a fetal position in my bed.
This was 19 years ago, and I now realize that I was not upset that my son had autism; I was upset that my life would not work out as I had planned. It is selfish, maybe, but I hope it is understandable. The frustration then morphed from “my life is now altered,” to “OUR life is now altered, and how will the world look at my son?” As time went on, I realized and understood that Sam was Sam. I was okay with that and knew that he could be successful. It was disheartening that the world doubted his potential, a doubt that persists today.
Looking at tomorrow became bigger than raising Sam to survive without me or getting him a job: Autism Rocks and Rolls was born when Sam’s voice needed a platform.
Today, Sam is a college graduate, a TEDX speaker, and the Executive Director of Autism Rocks and Rolls Corporation, a 501c3 nonprofit that works to destigmatize autism. This did not happen overnight, and boy, did it take a village.
As Sam grew up, I continued to witness the world treating him like he “couldn’t” instead of seeing his abilities through his autism. I was in the constant mode of planning Sam’s tomorrow and the day after that and the day after that, and so on. How could I help Sam fit into a world full of boxes and checklists that he often didn't fit into? This world was not built for Sam and others like him, but what could we do to change this?
Changing Sam’s world
Firstly, I learned and eventually became familiar with the laws regarding compliance, IEP (Individualized Education Plan) construction and execution, and my rights (and his) as a parent of an individual with special needs. Granted, I am an educator. However, we live in a world with YouTube, Facebook groups, and ChatGPT. It's not hard to educate yourself on any topic you're interested in. I asked questions at meetings, called one when I felt the need (because it is our right to do that), and understood the IEP as a legal document that HAD to be followed.
When Sam was in high school, I guided every meeting to answer the question, “What is Sam doing now in high school that is helping him transition into adulthood?” or “What is being done to work with Sam to find out what his career options are?” I required that educators meet him where he was, not where they thought he should be. I also stayed on top of how he was being supported socially and emotionally, not just academically, but also outside of school. Were his needs being met at home, at extra-curricular activities, or even with other family members?
Secondly, I paid attention. I noticed all the quirky things Sam did and said, and I ignored nothing. Yes, when he
turned six and became very interested in WWE wrestling, we may have had to set a timer to limit how long he could talk about it, but I never ignored his passion or any that followed thereafter. I supported him and viewed his passions as outlets or skills, rather than obsessions or fixations. I knew he was just practicing for future endeavors. I am so grateful I did because, to see where he is now, I have to ask myself, what if I hadn’t?
Lastly, I transitioned from protector to partner (well, I would still protect Sam to the ends of the earth, but that is a given). I handed him the reins, as hard as that has been. I supported him when he wanted to start a podcast about autism. I have watched him drown in his own mistakes, knowing that what he was doing was wrong after not heeding advice, and I have taught him to speak up, every single time. I instilled in him the knowledge that I am not going to be here forever and that there will be a tomorrow without me. He has to be ready for that, and I am not going to always be here to fight the bad guy. He needs to understand this and learn to do it himself. As a parent, you have to do this if your child is going to be successful tomorrow and every day after that.
Looking at tomorrow became bigger than raising Sam to survive without me or getting him a job: Autism Rocks and Rolls was born when Sam’s voice needed a platform. He wanted to be the voice of those who did not have one and wanted to be seen as a human being with skills. When that became his fight, it became my fight too. This fight has led to the mission that those with autism are not broken and do not need to be fixed. Sam does not want pity for embracing who he is and who he is growing into. Autism Rocks and Rolls Corporation is bigger than Sam Mitchell now, although the roots of where we come from, $70 in a PayPal account in our basement, are essential and remain at the forefront. We are now two podcasts, curriculum, training, and event planning deep. I went from a parent to a founder, but have always had the same thing in mind: how will I help Sam continue to grow as a person and now, a successful human being?
Here is what I encourage all parents of children and adult children on the autism spectrum to remember:
• Start preparing for the future early (and I mean when they come out of the womb!)
• Educate yourself on what YOUR children need, not somebody else’s. We are all only experts in our own story.
• Always advocate for your children and adult children (in and out of school) and never stop. Transition from being their sole advocate to encouraging them to be their own advocate. The world we live in is not an easy one to become a part of. Walk with them, not in front of or
behind them. Don’t control them, collaborate with them.
• Let them lead and encourage them to follow their interests. At the same time, as a parent, you follow their interests and pay attention. Listen to them but require them to listen to reason too. They don’t know everything, but neither do you.
• Prepare a world for your children without you in it.
• Work on surrounding them with those who believe they are worthy and capable.
• Don’t be hard on yourself. You are not the perfect parent. You won't win Parent of the Year awards every day. It's hard, but deeply worth it.
Today, I sat outside the door while Sam called the gentleman who sent him an email about a potential job interview. I wanted to come into the room, tell him what to say, and control the situation for him. I could have, but it would not have been the right thing to do. You need to show them the way, but also let them mess up. Encourage them, but allow them to use their voices and make their own decisions. Lastly, let them do it. Sam was not conducting that conversation perfectly. However, I knew at that moment, he had got this. One day, I will not be on the other side of the door. I have to work toward that tomorrow, when I will not be here.
Gina Mitchell has been her son Sam's number one fan since birth, but especially since Sam has spread his wings and shown the world what he's got. She is currently a teacher of 8th grade students and has a Bachelor's degree in English/Social Studies Education, a Master's degree in Education, and a Gifted and Talented Education degree. Gina has been a teacher for 20 years and still is. However, her second job is working at Autism Rocks and Rolls Corporation with Sam. When Sam's life mission became helping others, it became hers too. Gina's ultimate goal is to help Sam with his NonProfit and advocacy work full-time. Her favorite pastimes are listening to crime and detective podcasts, music and crazy dancing with her family and students, leisurely swimming, reading books, traveling, meeting new people, playing with her cats, and shopping for bargains.
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✉ info@autismrocksandrolls.com
Autism Advocacy Interrupted is more than a book it’s a wake-up call for anyone who cares about the autism community.
In today’s advocacy landscape, families often face a storm of competing voices: infighting, ego-driven agendas, and fragmented messages that do little to meet real needs. Jeanetta Bryant, both a mother and seasoned advocate, has lived through the confusion, frustration, and heartbreak this division causes. With unflinching honesty and compassion, she lifts the veil on the hidden fractures in the movement, introducing four distinct advocate types Revolutionists, Trailblazers, Mavericks, and Disruptors.
Through these portraits, Bryant invites readers to examine who they follow, why their message matters, and whether the noise is helping or hurting the very people we claim to serve. She challenges us to trade division for unity, volume for vision, and personal agendas for purpose.
This is not a call to choose sides it’s a rallying cry to rebuild the foundation of autism advocacy so that dignity, wellbeing, and future opportunity for those on the spectrum come first.
If you’re ready to reflect, engage, and make a difference, Autism Advocacy Interrupted will give you the insight, courage, and clarity to be part of lasting change.
The Benefits of Adding a Student Profile to Your IEP
By Priya Pasumarthy
Astudent profile is an outline that covers the student’s overall progress, academic growth, strengths, supports or services in place, interests, achievements, short-term and long-term goals, which can be attached to the student's Individualized Education Program (IEP), 504 plan, or other relevant documents. It can be either brief or detailed. Maintaining a student profile at all times in special education can yield many benefits. A student profile can be used by any student (neurotypical and neurodivergent) at school through university, and can be modified or adapted as needed to fit the requirements or circumstances, education, financial/estimates, or other planning. It also promotes motivation in students, leading to self-determination, while also fostering autonomy.
What should be included in a student profile to yield benefits? A student's profile can include a brief introduction (add pictures, seals, or artworks), the student's strengths/ achievements versus areas of growth, the services or supports needed, and their short-term and long-term goals. One needs to ensure that the template is created in such a way that it covers the core questions, including: who it is about, their strengths, successes or achievements, areas of opportunity, supports or services in place, long-term goals, and how to achieve them. It can also be drafted in creative ways that are strength-based, ambitious, and well-planned.
Let’s review a simple template below:
A student's profile can include a student's basic introduction (add pictures, seals, or artworks), the student's strengths/achievements vs areas of growth, what services or supports are needed, and their short/and long-term goals.
One can revise and revisit the template to update progress, add service hours, and other such information. It must be noted that a student profile is more or less comparable to a compass (the functioning of a compass). It assists in setting the direction of a student’s overall journey from education
through employment. Once the student profile is in the IEP, things start to fall in place, yielding clarity.
Summing up
Adding a student profile to an IEP offers a multitude of benefits. It is simple and easy to develop a student profile. While writing a student profile, it needs to be stitched in such a way that it covers the core questions about the individual, is ambitious, and well-planned. It can be used by parents, teachers, and by students themselves, and it can be revised and revisited with progress updates. It can also be modified or adapted to meet the individual’s specific requirements and circumstances. A student profile is somewhat comparable to a compass in that it helps set directions and further assists with both planning and financial/estimation aspects. Student profiles can transform the 2D aspects of IEPs into a functioning system. They can play a vital role in promoting motivation, leading to self-
Priya Pasumarthy is an educator, health care provider and the author of Halloween At Luke’s (2019) and Our Little Promise (2022).
30-MINUTE LESSONS FOR SMALL GROUPS OR CLASSROOM INSTRUCTION
By Ginger Healy and Ashley Wright
Are you looking for an engaging tool to help students thrive amidst unique family dynamics?
This workbook will equip you with everything you need to do just that! Teach crucial social-emotional skills in thirtyminute lessons for small group instruction in grades 2-9. It’s flexible, adaptable, and requires minimal prep time – no extra materials required!
Recognizing the increasingly diverse landscape of childhood, this curriculum offers crucial support for young people navigating divorce, single-parenthood, foster care, kinship care, or parental incarceration. Often, these students may feel isolated or internalize family changes, mistakenly believing they are somehow to blame. This group aims to provide a consistent space where they can feel seen, supported, and not alone in their experiences, while learning that external family circumstances are not a reflection of their worth.
Inside, you’ll find:
• 10-12 Complete Lessons with ASCA® standards
• Comprehensive Action Plan
• Permission and Completion Letters to send to caregivers
• Attendance Logs
• Pre- and Post-Assessments for Program Effectiveness
• Results Report to share with interested parties
Topics include self-awareness, emotional resilience, communication, and conflict resolution. Through reflective exercises, role-playing, and self-affirmation practices, participants will build confidence, enhance their sense of self, and learn how to navigate challenges while setting goals for personal growth and future success. This workbook’s strategic design allows students to empathize, connect with others, and translate their new knowledge into practice. Use 30-Minute Groups: Navigating Family Dynamics workbook to help empower students to understand their value, navigate challenges, and build a strong sense of self, regardless of their family structure!
Ginger Healy, LCSW, is the Director of Programs at the Attachment & Trauma Network and co-host of the *Regulated and Relational* podcast. With over 25 years of experience in trauma and attachment, she’s worked as a child abuse investigator, hospital social worker, school therapist, and international adoption supervisor. A nationally recognized speaker and author, Ginger trains educators and caregivers in trauma-informed, brain-based strategies that support emotional regulation, resilience, and connection. She is the author of *Regulation and Co-Regulation* and *Managing Big Emotions,” with more titles forthcoming. A mother of four, Ginger’s personal journey parenting children with developmental trauma and neurodivergence brings deep empathy and authenticity to her work.
Named a 2022 American School Counselor of the Year Finalist, Ashley Wright is a dedicated school counselor, licensed professional counselor, and national speaker. She continues to empower students and educators to build resilience, embrace diversity, and foster strong relationships—creating hope and lasting impact throughout schools and communities.
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REFLECTIONS
REFLECTIONS Double Digits
By Bailey Carmack
In just a few short months, he enters a new era away from the single digits that seem to fit him so much better
Double digits— but how?
Will he no longer be “little” now? I can’t help but wonder if 10 will just feel the same as the first 9.
People ask his age when they see his smile, his stroller, his peculiarities Usually, they smile back, though I can see the unspoken questions.
But single digits are more acceptable, conceivable, admissible when you are so very different and delayed.
Double digits are coming in just a few short months. Soon to follow: puberty, and middle school, and with them a whole host of challenges that I try not to drown in.
He doesn’t know, or care, or worry, but I do
And my fear is that the world does, too; Or perhaps it doesn’t care enough? that it will judge or shun or turn a blind eye against the sweetest little double digit guy.
Bailey Carmack is a mom, wife, and special education teacher living in the DFW area. She and her husband, Will, have two kids, 11-year-old Nell and nine-year-old Liam. When Liam was 10 months old, they found out that he has a rare chromosome abnormality called 18 p deletion and had no idea what his future might look like. Now, at age nine, Liam’s diagnosis shows itself in multiple ways, including being non-verbal, intellectually disabled, and severe ADHD. Despite the challenges their family has, Bailey, Will, and Nell love caring for Liam and teaching others about him, as well as what it’s like to be in his life, to help raise awareness and garner support for families like theirs.
THE FRIENDSHIP & DATING DUO
What If I’m Not Ready to Date Yet?
Why That’s Not a Problem – And What to Do Instead
By Jeremy and Ilana Hamburgh
For the first 10 years of my career, I built a name for myself as the go-to dating coach for autistic adults. Then things changed.
More and more adults started getting autism diagnoses at the same time that more and more adults started identifying themselves simply as neurodivergent. We welcomed them all into our program, Social Life 360.
As our program expanded, more clients wanted to focus on building friendships and finding a community first, rather than dating. We welcomed that, too, because ultimately, there are great people out there who are just not ready to date yet, and that’s okay.
If you’re feeling pressure to put yourself out there but something inside you says “not yet,” Ilana and I want you to know that you’re not broken, behind, or giving up. You might just be self-aware.
In our work coaching autistic and neurodivergent adults, we’ve seen how powerful it can be to “press pause” on dating as part of their social strategy. Some people know they aren’t ready to pursue a romantic relationship yet. Others suspect they might be ready, but they’re not quite sure how to start. Either way, it’s not a sign of failure.
Because here’s what we’ve found time and time again in our coaching practice: There’s a lot you can do to move your social life forward, even if you’re not ready for dating yet.
Romantic relationships aren’t separate from every other kind of relationship. Rather, they’re a deeper version of the same skills you use to build friendship.
The real reasons you might not feel ready
There’s no single reason why someone might be hesitant to start dating. Here are some of the most common reasons we hear:
• You’ve been rejected before, and you’re scared of going through that again.
• You’ve never dated, and it feels overwhelming to start.
• You’re still working on your confidence or your conversation skills.
• You feel pressure from parents or peers, but not much personal motivation.
• You’ve spent more time feeling “different” than feeling “desirable,” and that’s made romance feel out of reach.
• You’re not sure you’re ready for the commitment that a romantic relationship requires.
All of those are completely and totally valid. And none of them disqualify you from eventually finding love. It just means you might need a little more support, a little more strategy, and a little more time.
Why pushing yourself too soon can backfire
Sometimes, people try to force themselves to date because they think it’s what they should be doing. Maybe their parents are anxious, as everyone gets older. Maybe they feel behind compared to their siblings or colleagues. Maybe they think dating will “fix” their loneliness.
But starting to date before you’re truly ready can lead to a string of discouraging experiences, from uncomfortable conversations to unmet expectations to feeling like you're always trying to be someone you’re not. And when that happens, it’s easy to walk away thinking, “I should give up because dating isn’t for me.”
We’ve found that the clients who are most successful in starting romantic relationships are the ones who feel ready to “dive” into the dating process.
So, what is readiness?
Readiness isn’t about suddenly waking up one day with more confidence or getting some kind of magical makeover. It’s not about having a job, a better job, losing weight, or buying new clothes. And it’s certainly not about “fixing” yourself (because you’re not broken to begin with). Instead, readiness comes from two things:
1. You’ve shown yourself you can build and maintain friendships.
Romantic relationships aren’t separate from every other kind of relationship. Rather, they’re a deeper version of the same skills you use to build friendship. Listening, sharing, planning, working through misunderstandings, letting people know they matter: these are both friendship and relationship skills. So, if you’ve started to build friendships that feel fulfilling, you’re developing exactly the “muscles” that you need for dating, too.
2. You have some clarity and motivation about who you want in your life.
Thousands of people have watched the free training on our website, and the first step tends to resonate with most people: Know who you’re looking for. You don’t need to know exactly who your ideal partner is, but it
helps to know the kind of connection you’re looking for, what your values are, and whether now is the right time to actively seek it. Once you know that, we can reverse engineer a strategy to help you get there.
So, are you ready to start dating? If you’re not quite sure you’re ready yet, here are a few ways to get closer:
Build friendships first
Friendship is not a consolation prize. In our opinion, friendships are some of the most fulfilling relationships you can have. And they also happen to be great training for the kind of romantic relationships you may want in the future.
When you build friendships, you learn how to open up, how to be consistent, and how to recover from awkward moments. You learn how to listen, how to express yourself, and how to show someone they matter. All of those skills are what make romantic relationships thrive.
Grow your mental library
If you’ve ever felt unsure of what to say or how to start a conversation, or how to keep it going, you’re not alone. It’s very, very common.
One strategy we use with our clients in Social Life 360 is building what we call a “Mental Library” – a collection of great questions, answers, and stories that can help you navigate social moments with more ease and create connections with more spark.
Start paying attention to the stories you enjoy telling, the questions you’re curious about, and the things that “light you up” when someone else shares them. These aren’t just conversation tools; they’re connection tools that belong in your Mental Library.
Practice making yourself known
Being vulnerable and letting people see the genuine you can be scary for most of us. But it’s also essential for building a romantic connection.
Practice with people you trust by sharing something small and personal. Then, see how it feels.
Now, try it again. This time with something slightly deeper. Notice how people respond to you. You don’t need to share everything with everyone. However, the more you get used to making yourself known and letting yourself be seen, the easier dating will feel when the time is right.
Quiet down your “Inner Critic”
One of the most important changes you can make is to stop thinking of “not dating yet” as a sign of failure. Try replacing the negative self-talk, which we call your “Inner Critic,” with more empowering beliefs:
• “I’m behind” can be “I’m building the skills that will make dating better when I’m ready.”
• “No one would want me” can be “I’m learning what kind of connection I want and how to offer it.”
• “I should be dating” can be “I get to choose when and how I pursue relationships.”
This isn’t about false positivity, it’s about honest empowerment that shifts your perspective to what’s possible.
You’re not behind. You’re building something real
Dating will be there when you’re ready. But right now, you might be doing some of the most important work of your life: learning how to connect deeply, show up authentically, and trust yourself in the process.
When you do feel ready, you’ll be able to date with clarity, with skills, and with confidence because you’ll know who you are, what you want, and what kind of relationship you’re working toward. You’re not stuck. You’re preparing. Please let us know how we can assist you.
Jeremy and Ilana Hamburgh are friendship and dating coaches who empower autistic and neurodivergent adults to find community, form friendships, start dating, and build meaningful relationships. With Ilana's 16 years of experience as a special education teacher in New York City and Jeremy's 15 years as a social coach, their clients benefit from their depth of knowledge and an unparalleled sense of compassion.
Their cutting-edge program, Social Life 360, teaches clients how to meet new people in new places with more confidence by decoding social situations for their clients in an innovative way: They break down the complexities of social and dating strategies into formulas, diagrams, checklists, and step-by-step processes that are more intuitive for people with neurodivergent minds.
The Social Life 360 program also provides its clients with a warm, inclusive, and vibrant online community of other clients and graduates from all across the United States, and different corners of the world, so clients feel embraced on their social journey from day one.
Parents can schedule a complimentary family Strategy Session here. Autistic and neurodivergent adults can schedule a complimentary family Strategy Session here.
The Benefits of Music for the Exceptional Child
By Meshell Baylor, MHS
M"Music
gives a soul to the universe, wings to the mind, flight to the imagination, and life to everything.” – Plato
usic is an arrangement of various sounds to create harmony, melody, or tune using expressive content. Music tells a story and at the same time soothes the soul. Whether music reminds us of a childhood memory from the past, a particular feeling through a hard time, or when you're just in the mood for some good fun. Music can be therapeutic to the mind, body, and soul. According to the Department of biological and physical science, music can also improve and enhance an individual's cognitive abilities and functioning.
When you're a parent of an exceptional needs child in the beginning stages of early development and diagnosis, you are often trying everything to tap into your child's world. Parents might try to help change their diets, practice yoga, join social groups, and do everything in their power. Then, one day, you might begin to notice that a simple tune or song positively impacts their behavior and mood.
When my child Justin was in the early stages of his diagnosis and was non-verbal, I would be mindful of what I played or
he watched. One particular day, I began to play the song My Cherie Amour, a ballad sung by the great Stevie Wonder, and I was astonished at how my son started to rock, trying to hum, or even mimic the lyrics to the song, although he could not speak.
From that moment on, every morning when we got Justin up and ready to ride the bus, we'd play “My Cherie Amour.” Watching him sway to the music and try to make out the words demonstrated to me that his mood was elevated, his stress levels were reduced, and his behaviors were soothing and peaceful. In that moment, we recognized the power of music and its profound impact on a child or individual with exceptional needs.
Many organizations and programs now utilize music as a therapeutic and holistic approach to helping the mind, body, and spirit find comfort. Here are some helpful things you can do to get your child into music or to utilize music therapy.
#1. Play positive music: There is a reason behind the phrase “music is like food for the soul.” Learn about your child's favorite type of music and ensure it is positive music that can be shared at school with friends. Find mindfulness music or a genre that your child loves to help them reduce stress, triggers, or emotional distress.
#2. Use musical toys: For toddlers and young children, find positive mindfulness toys that play music. Give them something to enjoy while playing on the floor. Find toys or games that sing, which the child may want to interact with during their fun time.
#3. Find instruments: If it is in your budget, purchase musical instruments that your child may want to play, like a ukulele, mini piano keyboard, or drum set. Encourage your child to exercise their strength and express themselves through the art of music.
#4. Utilize music therapy: Therapy using music is a very demanding type of holistic therapy for children with disabilities. Music through holistic and therapeutic mechanisms forms positive cognitive strengths and abilities in children with low mobility and cognitive functioning. Therapy through music lowers blood pressure, reduces
stress, helps build mobility, and helps with repetition and memorization skills.
#5. Join social groups: Check with your local regional center, DDS (Department of Developmental Services), to find a local social group for kids, teens, or adults with disabilities to participate in music and performing arts. This gives your exceptional loved one the opportunity to use music as a form of self-expression and practice social skills with others.
#6. Enroll in music lessons: If your child with exceptional needs loves the way music makes them feel physically, mentally, and emotionally, then register them for music lessons. Check your local area for private lessons or class sessions on learning to play an instrument. You never know, you may have the next Beethoven on your hands.
There is a reason behind the phrase 'music is like food for the soul.'
Final thoughts
The best part of music and its remedy to help a child in need is watching them find a love for music all by themselves. There is joy to be found in watching them select their favorite station that plays their favorite genre, allowing them to be the DJ in the car on their way to school or practice, encouraging them to create a playlist, or seeing them learn how to create music themselves. Today my son Justin has performed in musicals and talent shows and I have seen how so many exceptional children are learning how to find their voice through the art of music, so be the parent to help them learn, love, and grow through music.
Resources
Documentary Autism The Musical: Watch Autism: The Musical Streaming Online | Hulu
Zaatar et al. The transformative power of music: Insights into neuroplasticity, health, and disease. Brain, Behavior, & Immunity – Health. Volume 35, February 2024, 100716 The transformative power of music: Insights into neuroplasticity, health, and disease - ScienceDirect
Meshell Baylor, MHS, is a mother of four children—two of whom are on the autism spectrum. She serves her community as a social worker and advocate in the Los Angeles area. She has a Bachelor’s degree in human services from Springfield College and a Master of Science degree in human and social services. Meshell continues volunteering and giving within her local area while serving the special needs community.
�� Center for Autism and Developmental Disabilities
Superheroes and Villains: NATHAN’S STORY
By Jennifer McAvoy MEd
Providing assistance to individuals on the autism spectrum can be an extremely difficult undertaking. I am sure many of you already understand the intensity a situation can take on when you are attempting to support a young person who may engage in unsafe behaviors. Polite way of saying, it sucks to get bitten, hit in the face, hair pulled, and so on.
I also don’t need to tell you that, despite the chaos and pain these types of behaviors often lead to, the person behind the behavior is still compassionate. This wasn’t always my first thought as a caregiver, especially after an escalated incident. Let’s be honest, when you are nursing your wounds, you may think, well, heck, that was insanity. In turn, it may be easy to be less than empathic because empathy requires understanding the other person’s perspective. Having a mutually understood perspective is difficult at best when supporting someone on the spectrum.
The impact we have as support professionals and caregivers is not always immediately measurable, but it is there, and it is powerful. Don’t give up before you have the opportunity to be a superhero.
Meeting Nathan
This was the case when I began supervising a series of group homes. There was one in which a young man named Nathan resided. At the time, Nathan was approximately 14 years old and moving into a residential placement for the first time. His behaviors at home had put the family’s safety at risk, and it was now their wish to find a safer alternative. The group home provided the support Nathan needed to participate safely in daily activities.
Blonde hair and blue eyes, he had an angelic appearance in many ways. He was tall and thin, clearly on the verge of adulthood. Yet he retained his childlike smile and mannerisms in many ways, which was quite an endearing quality. If you wanted to discuss superheroes, you found your man. Nathan was quite well-versed in the language of Marvel
and would happily engage you in chatter around the topic of superheroes and villains. He was a young man in a complex situation, but he had a very warm and lovable personality.
I began to understand the impact of his disability and challenging history when he displayed aggressive behavior for the first time. The person I was beginning to form a trusting working relationship with was swinging a dining chair at my head. Not just casually swinging, but wielding the chair like a bat and pursuing me as if it were his one and only wish to destroy me. I was enthusiastic about SpiderMan dialogue, but this activity of hunting me with furniture was definitely non-preferred. I had navigated escalated incidents previously, but Nathan took it to a new level. I was young, naive, and still new to the field in many ways. The intensity of the behaviors I saw Nathan engage in opened my eyes to the situations I may face as a professional providing support services.
A fearful moment
The situation with Nathan would improve, get worse, and then improve again. It continued to be unstable. My work with Nathan continued for several years, even after my resignation from group home supervision. I ended up working in Nathan’s school classroom a few years later. Now nearing the end of high school, Nathan was bigger and stronger. That would prove a very difficult combination for Nathan’s specialized school staff. It was particularly challenging for his teacher, who would require surgery before Nathan would graduate.
While sitting at a table with a student, I became aware
of commotion on the other side of a nearby doorway. Moments later, Nathan and his teacher tumbled through the doorway. Nathan was swinging at the teacher, and she was desperately trying to protect herself. It soon became obvious that assistance was needed, and I ran over to protect the teacher physically, as did another staff member. Nathan continued to act aggressively and successfully made contact with his teacher’s face, breaking her nose. I continued to work to de-escalate the situation as the teacher received medical attention. This was the worst incident I had witnessed involving a young person and their support team. In the moments after, there were tears, shock, and a wave of emotions for everyone.
A beautiful gesture
I only recount this story because of the very unlikely ending. About 10 years have passed since I last had contact with Nathan. I had returned to college for a graduate degree, and Nathan had finished his high school career, so our paths diverged. Then, all of a sudden, a message popped up on my phone. Nathan had used Facebook Messenger to contact me. He was reaching out with one of the most beautiful gestures a person has ever made to me. He contacted me to say thank you.
Nathan, through Messenger, recounted his perspective regarding those turbulent years. “I was scared all the time,” he told me. He explained that he was always fearful and uncertain about life in general as a young person. Then he said one of the most pivotal statements I have heard in my life: “But you, you always made me feel safe.” Prior to this outreach, I considered myself a failure when it came to the support I had offered Nathan. I felt like the villain in his story. Conflicted with “should have, and would have, and didn’t do.” I was constantly criticizing myself for how I should have done better by Nathan. And then he reached out to tell me quite the opposite.
The larger picture is blurry when you are in the throes of providing care. You never know the impact you are having on the individual long term. You may think of yourself as failing when quite the opposite is occurring. The impact we have as support professionals and caregivers is not always immediately measurable, but it is there, and it is powerful. Don’t give up before you have the opportunity to be a superhero.
Jennifer McAvoy, MEd, earned a Master’s Degree in Education from Arizona State University. She has also obtained a graduate-level certificate in Positive Behavior Support from Northern Arizona University. She has spent more than 20 years working to support individuals with unique needs. She has worked as a classroom teacher, behavioral consultant, and clinical liaison. Currently, Jennifer works to assist in the oversight of behavior treatment planning in her home state.
ALL THINGS OT Sensory Showdown: A Fun Way to Prepare for a New Sensory Experience
By Laura A. Ryan, OT, OTR, OTD
For those with sensory selectiveness, a new experience can be anxiety-provoking because of the unknown sensory experiences that may be encountered. Breaking down that experience can help alleviate that anxiety and bring more enjoyment to the day.
Our bodies take in sensory information through eight channels. There are the five typical senses, including vision, hearing, smelling, tasting, and touching. There are three lesser-known but equally important senses, which are proprioception, vestibular, and interoception.
Proprioception is the sense that originates from the joints and muscles, providing information about the body's position and movement. It also gives one a sense of where they are in space. For example, if you are sitting at the table, you are able to determine if your legs are side by side or crossed through these proprioceptors.
The vestibular sense originates, in part, from the inner ear and is responsible for postural stability, sensing movement in space, and the orientation of one’s head in space. In short, it gives us balance and makes us realize when we are standing and not bending over.
Lastly, interoception is the sense of information from the soft tissues of the body, such as the stomach or bladder. Interoception is responsible for telling us we are full or that we need to go to the bathroom. It is also very important in sensory regulation.
Preparing for a new experience
New activities can bring an abundance of new sensory experiences that can be hard to anticipate. Will this activity be loud, and should I bring my headphones? Will there be weird smells? Will I get thirsty or hot? These thoughts can evoke strong emotions, leading to feelings of overwhelm, and the anticipation of certain sensory inputs can cause distress.
Often, exploring the sensory expectations of this activity can not only allow an individual to acclimate to the expectations ahead of time but also proactively create a plan to regulate those sensory experiences. Doing this as a family or in a group creates an opportunity for a fun conversation where everyone learns information about their family members they may not have known. For example, when doing this with a group, the others found out that although I really like to cook and bake, I am very uncomfortable when my hands are dirty, and that is why I always have a damp towel on the kitchen counter.
When exploring the sensory expectations, it is helpful to break down the activity into the eight senses and, as always, provide lots of visuals. Creating a Google document that can be edited, titling this Sensory Showdown exploration chart with the destination, and adding pictures (bonus if they are personalized and/or family pictures) also gives a robust visual of what to expect and makes the conversation more fun. You then break down the experience as it relates to each
of the eight senses. An important point here is that there is no wrong answer, and if there is more than one person doing this exploration, each person will likely have different answers. The more information you can provide, the better, because information promotes regulation.
Below is an example of how this exploration can be done in a fun, engaging, and curious manner.
Sensory Showdown for 6 Flags Amusment Park
Once the chart has been completed, one can decide how to proactively plan for the sensory experiences that have just been discussed. Here, each person creates their own “To-Go Bag.” This bag or backpack contains all the gear one needs to feel happy, relaxed, and regulated throughout the day. Using the Sensory Showdown chart, one may decide to pack sunglasses and/or a wide-brimmed hat to block out the sun, medication for a possible headache due to the screaming, and headphones to reduce the noise.
There may be items in the bag that are unique to that individual that will ensure a good day; for example, soft napkins from home instead of the scratchy ones at the food stands, or a particular water bottle that keeps the water extra cold or has a rubber straw they can chew on. Compiling these items may be a good way to discuss the day's plan. You might consider taking breaks every two hours or opting for the more popular rides early in the day, before the crowds get too big. Packing this “To-Go Bag” is a moment for the individual to mentally prepare for the day, adds a layer of responsibility for their well-being, which is an important life skill, and may bring peace of mind that then helps with regulation.
This activity can be fun and engaging and approaching it with a sense of curiosity will allow all family members to learn about how others see and experience the world which can then promote a sense of understanding, togetherness and affirmity. So pack your “To Go Bag” and go see the world!
References
Casale. J. Physiology, Vestibular System. National Library of Medicine. https://www.ncbi.nlm.nih.gov/books/NBK532978/
Mahler. K. Teach Self-Regulation from the Inside Out with The Interoception Curriculum. https://www.kelly-mahler.com/what-isinteroception/introducing-the-interoception-curriculum-a-step-bystepguide-to-developing-mindful-self-regulation/ Proprioception. Science Direct. https://www.sciencedirect.com/topics/ neuroscience/proprioception
Laura A. Ryan, OT, OTR, OTD, is an occupational therapist who grew up on a large horse farm in Massachusetts. She has been practicing for over 30 years and has been using hippotherapy as a treatment tool since 2001. She enjoys seeing the happiness and progress each person has achieved through the therapeutic impact of the horse. Laura has also developed a program for breast cancer rehabilitation using therapeutic input from the horse.
✉ hooves4healingot@gmail.com
Embracing Autism in Churches: A Journey
of Faith, Growth, and Inclusion
By Sydney Roberts, MA
Hi,
I’m Sydney. My journey began with a diagnosis of Asperger’s syndrome, later updated to Autism Spectrum Disorder, Level 1. Navigating life on the spectrum has taught me a lot, especially about the need for understanding, inclusion, and support within church communities. I want to share my experience to help churches and places of worship better connect with and serve children and youth like me.
The power of belonging and being understood
Facing early challenges
Growing up, my school years were turbulent, filled with suspensions, expulsions, and frequent school changes. These struggles weren’t just about academics; they stemmed from a lack of awareness and support for kids like me. Unfortunately, the Church wasn’t always a safe haven either. While some moments and people were positive, others left me feeling like I didn’t belong.
It was especially difficult hearing words like “syndrome” or “disorder” used in ways that made me feel like a problem. As a child, I wrestled with verses like “you are fearfully and wonderfully made,” wondering if that could really apply to someone who didn’t feel wanted by their own church or Christian school. These experiences deeply affected my mental health throughout my teen years.
But that changed when I found a faith community that truly welcomed me. They helped me grow not just spiritually, but emotionally and socially. I finally felt seen, valued, and part of something bigger than myself. That kind of community support made all the difference.
Kids on the spectrum notice how they’re treated. They’re watching to see if the Church truly reflects the heart of Christ, even when things are messy or inconvenient.
Practical strategies for ministry leaders
If your church wants to support kids on the autism spectrum better, here are a few things that truly help:
1. Give clear, detailed instructions
Don’t assume we know what’s expected—break tasks down step-by-step. Clarity goes a long way, whether it’s in Sunday school or a youth group activity.
2. Lead with patience and calm communication
We ask questions because we need to understand, not because we’re trying to challenge authority. A calm tone and a little extra patience can turn confusion into connection.
3. Understand, don’t punish, meltdowns
When a meltdown happens, it’s not defiance—it’s overwhelm. Sensory overload, anxiety, or frustration may be building up. Instead of punishment, offer support, empathy, and a quiet space to regroup.
Creating
a
truly inclusive Church
1. Make inclusion a reality
Inclusion isn’t just a buzzword—it’s something that needs to show up in your church culture, programming, and attitudes. Ask yourself: Is your ministry truly welcoming to those with disabilities? Are there systems in place to help kids on the spectrum fully participate?
2. Equip your team
Train your staff and volunteers. Equip them with tools from organizations like SOAR, Key Ministry, and Joni and Friends. These resources can help bridge the gap between intention and impact.
3. Empowerment begins with understanding
When you understand the unique needs and strengths of those on the autism spectrum, you begin to empower them. The proper support can help a child not just survive but thrive—spiritually, socially, and emotionally.
A call to reflect love
Looking back, I’ve seen how much difference a compassionate church can make. Ministries have a unique opportunity to be the hands and feet of Jesus to lead with love, patience, and wisdom. Kids on the spectrum notice how they’re treated. They’re watching to see if the Church truly reflects the heart of Christ, even when things are messy or inconvenient.
More of my story
If you’d like to hear more, I’ve shared parts of my faith journey, the struggles and the next steps, in two chapters of Embracing the Autism Spectrum: Finding Hope & Joy Navigating the Neurodiverse Family Journey by Rev. Dr. Stephanie C. Holmes, Rev. Dan Holmes, my sister Erica, and myself. I’ve also made a video specifically for church leaders about how to include and support individuals like me.
I also run a soap ministry called Simple Suds by Syd, which raises money to fight human trafficking. And when I’m not working or volunteering, I’m probably hanging out with my husband Josh and our fur babies, Piper and Peanut, or diving into a new history book.
My hope from sharing my journey is that churches everywhere will become places of genuine welcome and belonging for every child.
Sydney Roberts, MA, is a neurodivergent woman living her best life. She shares her life and tips in articles, blogs, and on Dr. Stephanie C. Holmes' YouTube channel (Aspie to Aspie). She is a contributing author with her family in the newly released book, Embracing the Autism Spectrum: Finding Hope & Joy Navigating the NeuroDiverse Family Journey. Sydney followed her passion for history and museums and pursued her MA in Public History with Museum Studies certification. She is the Membership Manager at the Durham Museum of Omaha; Sydney, her husband, and her two fur babies, Piper and Peanut, reside in Omaha.
Photo Credit: Matt Longcrier Photography
THE COLOR WHEEL: A Colorful Way for Outdoor Engagement
By Karilyn Rollo, OTD, OTR/L
I am delighted to turn this installment of Nature Notes over to an amazing occupational therapist, Karilyn Rollo, who I was privileged to work with as a doctoral occupational therapy capstone student and is now getting ready to enter pediatric occupational therapy practice.
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
Unstructured outdoor play such as climbing trees, overturning rocks, searching for worms or bugs, or playing
“make believe”, increases your child’s physical activity.
Humans have a natural connection to the outdoors. Author Edward O. Wilson coined the term “biophilia,” hypothesizing that humans are genetically connected to the outdoors with an innate love and need for nature. The biophilia hypothesis suggests that humans are healthier when they are connected to nature. Not only does outdoor engagement promote happiness and health, but it also offers a range of therapeutic benefits to various populations.
Consider children and youth, especially children with exceptional needs. Children have less contact with nature than previous generations due to the rapid modernization of technology, increased sedentary activities, the
urbanization of rural areas, and overall safety concerns of parents and caregivers. Atypically developing children and children with disabilities spend even less time in nature than their typically developing peers due to the inaccessibility of nature, nature-related activities, and natural environments. Today, it is rare to see a child rolling down a hill, spinning in circles for fun, jumping rope, or climbing to the tops of tall trees.
As someone who grew up getting my hands dirty, plucking every weed and wildflower I found, and romping around barefoot in the mud, I enjoy exploring ways to encourage children today to do the same. As a nature enthusiast, I genuinely enjoy sharing my love of nature with others, especially children. As an occupational therapy student, I continue to advocate for the therapeutic benefits of meaningful outdoor engagement whenever possible.
Benefits of creative outdoor play
Unstructured outdoor play such as climbing trees, overturning rocks, searching for worms or bugs, or playing “make believe”, increases your child’s physical activity, reducing the likelihood of obesity and weight-related concerns, and enhances creative thinking, executive functioning, and social skills. As a result of unstructured outdoor play, your child will likely experience improvements to their mental health.
To the parent or caregiver of a child with exceptional needs, the idea of unstructured outdoor play may feel daunting or unsafe. We often take away the autonomy of an exceptional child by choosing when, where, how, and with whom they get to play. It is important to remember that play is your child’s primary occupation and an essential component of their childhood. Children with exceptional needs may require closer supervision when in nature, but they can benefit from outdoor play all the same.
Simply put, outdoor play benefits your child’s overall health and well-being. Angela Hanscom is an occupational therapist and the founder of TimberNook, a nature-centered developmental practice. She states: “I view nature as the ultimate sensory experience for all children and a necessary form of prevention for sensory dysfunction.”
Encouraging your child to outside play
Allow your child with exceptional needs to participate in the ultimate sensory experience by prompting them to play outside. Assist your child with unstructured play by offering natural materials to play and/or create with, such as sand, smooth pieces of wood, stones, shells, etc. Recycle cardboard boxes and create structures or tunnels for your
child to explore. Visit playgrounds during the middle of the day to avoid the influx of children during popular times or access a playground designed for smaller children. Consider an activity such as The Color Wheel.
What is The Color Wheel?
It is a simple, yet creative and engaging way for your child to spend meaningful time playing outside. This activity will give your child’s play very little structure, but structure nonetheless, while also prompting the use of their imagination to explore the nature around them. It’s a scavenger hunt. The goal of this activity is for your child to find bits and pieces of nature that correspond with a color represented on their wheel. They pin the piece of nature to their wheel, then continue to explore.
The wheel itself is a circular cutout of paper or cardboard with anywhere from 4 to 12 different colors represented. I suggest a simple Google search of the words “nature color wheel.” You will most likely stumble upon the website, MotherNatured, where Penny Whitehouse offers a free, printable option (https://mothernatured.com/printables/ nature-color-wheel-printable/).
If you are hoping to get more out of this activity, consider setting your child up with the materials and assistance needed to create their own color wheel. This will require a blank piece of paper, scissors, and a few crayons or markers. Either option, the printable version or the DIY version, will require you to have clothespins (or something similar) to attach bits and pieces of nature to The Color Wheel. (Pro tip: I have found it helpful to attach the clothespins to the child’s jacket or shirt sleeve to avoid losing them during the hunt for the perfect color match.) It’s really that simple. Assist your child as needed, hinting at objects such as fallen leaves, weeds, wildflowers, sticks, and seeds, to name a few.
This activity enriches the sensory system, promotes selfregulation and interoception, engages fine motor skills, gross motor skills, coordination, creative thinking, and more. Your child will actively use their visual perception (sense of sight and understanding what is seen) and proprioception (awareness of where their body is in space) to scan their surroundings and hunt for the perfect piece of nature to pin to their wheel.
Visual perception and proprioception may help your child learn to navigate their body when in a crowded space or social situation, such as a classroom or birthday party. Tactile senses (sense of touch) and the sense of olfaction (smell) are used throughout, aiding in sensory processing. Notice grasp patterns. How does your child pick up bits and pieces of nature? How do they pin it to the wheel? Practicing different grasp patterns will benefit your child’s ability to complete activities such as feeding or handwriting. Observe as your child dances through nature. You will quickly start to notice the array of benefits that are a result of this activity.
Following each new piece of nature pinned to the wheel, or at the end of the activity, find time to talk with your child. I am always in awe of the creative minds of children and find it important to take the opportunity to talk, but more importantly, listen to the child. The conversation facilitated by The Color Wheel allows you to see the beauty of nature through a child’s eyes in a heartwarming and wholesome way.
Consider asking a few of the following questions.
• Where/how did you find this [piece of nature]?
• Why do you think this [piece of nature found] best fits this color?
• Do you see any other colors in it [piece of nature found]?
• What does it [piece of nature] feel like?
• Does it [piece of nature] smell like anything?
• If you move it around [piece of nature] what do you hear?
• *If applicable* What does it [piece of nature] taste like?
• How do you feel after pinning it [piece of nature] to your color wheel?
• What did you enjoy the most about this activity?
The Color Wheel is a simple, yet well-thought-out scavenger hunt that gives your child a reason to opt outside and allows for safe, loosely structured, outdoor play. Their limitless imagination will make all the hard decisions. As the parent or caregiver, feel free to complete your own color wheel alongside your child, or sit back and relax. Let your child explore, whether it’s right outside the front door or in a park/ open space. The Color Wheel is a tool to help you create opportunities for your child to experience the benefits of nature. It is a colorful way for outdoor engagement. Enjoy.
Karilyn Rollo, OTD, OTR/L completed her Doctor of Occupational Therapy through Creighton University with intentions of pursing nature-based occupational therapy. Her Doctoral Capstone Experience centered around the therapeutic benefits of nature and advocating for nature-based therapy. Growing up in Northern Minnesota, Karilyn experienced the therapeutic benefits of nature from a young age. She feels called to share personal experiences and evidence-based practice to assist others in doing the same. In her free time, Karilyn can be found fly fishing, reading a good book, or hiking with her Australian Cattle Dog, Siggy, named after late author and environmental activist, Sigurd F. Olson.
Parenting Through the Fog: Emotional Survival Tips After an Autism Diagnosis
By Alyece Smith
Receiving your child’s autism diagnosis can feel like being dropped into the middle of a maze with no map. Emotions are complex—grief, confusion, relief, guilt, and love. They often hit all at once. I know, because I’ve lived it. There’s no standard manual that prepares you for this journey. Suddenly, you’re not only a parent, but a case manager, advocate, researcher, and emotional anchor.
When my son Caiden was diagnosed, I wanted answers, direction, and community—but instead, I felt overwhelmed and isolated. I remember sitting in my car outside the clinic, staring at the steering wheel and wondering, “What now?” That question haunted me until I began turning it into something useful—something I could share with others. That’s when I began writing What Now, Mama?, the book I wish had existed when I needed it most.
Through both professional and personal experience, I’ve learned that emotional support is just as essential as services and strategies. Here are some practical and emotional survival tips I wish someone had shared with me at the beginning:
1. Let yourself feel everything
Don’t suppress your emotions. Cry if you need to. Grieve the path you thought you’d walk. Joy will return—just give yourself space. Some days you’ll feel strong; other days, not so much. Both are okay. The sooner you allow yourself to process the emotional weight, the more grounded you’ll become.
Give yourself grace. It’s okay to mourn the version of parenting you imagined. Doing so doesn’t mean you’re not accepting your child; it means you're human.
2. Stop the Google spiral
Research is helpful, but information overload isn’t. Choose a few trusted sources and avoid late-night doom scrolling. You’re not alone. Too much information, too quickly, can lead to fear instead of empowerment. I recommend selecting two or three expert-backed resources and letting the rest go, at least for now. Learning is a marathon, not a sprint.
3. Focus on today
Initially, long-term planning can be overwhelming. Concentrate on what your child needs today. Celebrate small wins, like trying a new food or making eye contact. These may seem small, but they are foundational. Progress in the autism world is measured in inches, not miles.
One thing I wrote about in my guide is the idea of the “next right step.” Sometimes, just deciding what that is, whether it’s scheduling one appointment or making one phone call, is enough. You don’t have to have the whole journey mapped out.
4. Ask for help
You do not have to do this alone. Whether it’s help from a therapist, family member, or local support group, asking for help isn’t a sign of weakness; it’s a sign of strength. Build a care team that supports both your child and yourself. Having even one person who checks in on you regularly can make a world of difference.
In my book, I include scripts for asking for support, because that can be hard, too. Sometimes the words get stuck in your throat. That’s okay. Practice asking, and practice receiving.
5. Reclaim your identity
You’re still you. Your dreams and needs matter. Make time, even in tiny ways, to reconnect with yourself. A healthier you means a stronger parent. This might look like journaling, taking a solo drive, or simply saying no to one more obligation.
Your child doesn’t need a perfect parent. They need a whole one. You matter outside of your role as a caregiver.
6. Connect with other parents
No one understands the journey quite like someone else walking the same road. Whether it’s an online forum, a local parent group, or even social media, finding your
village makes a huge difference. Other parents can offer insights, share resources, and remind you that you’re not navigating this alone.
My nonprofit, Caiden’s Corner, was born out of this need for a physical space where parents and children could belong without explanation. Whether virtual or in person, find your people.
7. Don’t chase perfection
There’s no such thing as the perfect autism parent. Let go of Pinterest-worthy routines and Instagram-perfect days. Focus instead on being present, adaptable, and compassionate with your child and yourself.
You will make mistakes. You will learn as you go. That’s okay. You are exactly who your child needs.
8. Build a family culture of inclusion
Talk to your family about neurodiversity. Siblings, grandparents, and extended family can play a vital role in building a supportive environment. Use books, conversations, and shared experiences to teach them about autism. Empower your entire family to become allies.
9. Learn to pivot without shame
Sometimes therapies won’t work. Sometimes school accommodations won’t be enough. You’ll try, and things may fall apart. That’s part of the process. Permit yourself to pivot without shame. Flexibility is a strength, not a flaw.
10. Remember: this is your child’s journey, too
You’re the guide, but not the author of your child’s story. Allow space for them to grow, explore, and define success on their terms. Listen to their voice, even if
they don’t speak it in traditional ways. Respect their autonomy, and honor their joy.
Autism parenting is a journey filled with challenges, but also joy, resilience, and deep connection. My mission through What Now, Mama? and Caiden’s Corner is to ensure no parent walks this path feeling unseen or unprepared.
Support, community, and compassion can transform the fog into something far more navigable. You are not failing because you’re tired or confused. You are learning, adapting, and showing up every day. That’s enough.
And it all begins with telling the truth of our experience and allowing others to do the same. Let’s continue to build spaces where honesty is welcomed, vulnerability is safe, and connection is the goal.
Don’t suppress your emotions. Cry if you need to. Grieve the path you thought you’d walk. Joy will return—just give yourself space.
Alyece Smith is a business coach, autism advocate, and founder of Caiden’s Corner—a nonprofit dedicated to supporting families with sensory-friendly events and community resources across South Mississippi. She is also the author of What Now, Mama? a heartfelt guide offering emotional support and practical tools for parents navigating the early days of an autism diagnosis. As a mom to a neurodivergent child, Alyece is passionate about using storytelling as a form of healing, advocacy, and connection. She also hosts The ADHD CEO Podcast and mentors neurodivergent women building freedom-based businesses
sociallyausome.com
Foundation
caidenscorner.com
KATE MAKES IT GREAT!
Top Advice on Implementing Rewards, Potty Training, and Managing Sensory Issues
By Kate C. Wilde
Another issue, another collection of answers to your parenting questions! It’s a pleasure to respond to them.
Maureen from Missouri asks:
“My son, Frank, is autistic and nine years old. His teachers suggested I give him a reward (like a piece of candy) whenever he completes homework or answers my questions. I started this, and it worked, but now he won’t do things unless he knows what he will get in return. What did I do wrong?"
Hi Maureen. Thanks for your great question. Firstly, you did not do anything wrong; you excellently implemented what the school asked you to do. You get an A+. Frank also gets an A+ for using his intelligence.
It is not surprising that Frank responded in this way. This type of reward system can backfire in this way because it teaches children to expect a treat for doing things, rather than helping them find enjoyment in the actual activity. He
picked up on that quickly and is using it to his advantage.
This is easily remedied by making the activity you are asking him to do more intrinsically motivating for him. For example, if his homework is reading, match it with something you know that he likes. If he likes numbers, you might say, “Let’s see if you can read more than 51 words today?” If he's interested in road signs, consider reading a book about them.
The idea is to bring together in one activity: What you want him to do AND….
One of his current motivations.
Doing this will help him enjoy the activity. Liking the activity in the case of homework (and most activities) will be more effective in the long run. We tend to do what we like doing.
In the case of encouraging him to answer questions, use your response and celebration as the motivation. You could say, “Oh, that was a fabulous answer!”
“I love hearing your thoughts!”
“Your mind is so amazing.”
“Wow. That was a cool answer.”
“You are excellent at trying.”
Make the celebrations as warm and sincere as possible. All people, autistic children included, are drawn towards doing things that are received with warmth, delight and love. Be this for him.
And, for sure, ditch this other system; it is not working for him.
Alok from India asks:
“How do I help my 11-year-old stay dry throughout the night? He is completely potty trained during the day, but he is having trouble waking up to use the bathroom at night.”
Hi Alok. Great question! Here are some simple tips that work. Before you go to bed at night, gently wake him and help him walk to the toilet and attempt to urinate.
In doing this, you are not completely waking him up; just ensure he is half awake so he can walk himself to the bathroom. Stand behind him to offer slight support, guiding him in the direction of the toilet. He will be wobbly, like we all are when we take ourselves to the bathroom at night. You want him to walk (it will look like sleepwalking, zombie-like), so that his body gets used to waking itself up and walking to the bathroom at night. If you pick him up, it will not have the same effect; he must do the walking.
Stand him up or sit him down to urinate; it does not matter which one. Verbally ask him to do it. If he does not, you can put on the taps for inspiration. Then have him walk back to bed.
Do this consistently every night for a couple of weeks. It should do the trick.
Brenda from New Zealand asks:
“Here in New Zealand we have all four seasons. My son who has severe learning challenges finds the transition
of the seasons difficult. It takes him forever to let go of his sweater during the summer season, and then to accept a sweater in the colder months. He seems to have no trouble with gloves or hats, just wearing long and short-sleeved clothes."
Brenda, what an interesting question! I would tackle it from two perspectives:
Sensory: It could be just that his arms are very sensitive. So sensitive that it takes him quite a while to get used to the new feeling of having his arms covered or not covered. If this is the case, I would suggest you try the “Wilbarger Brushing Method.” Type this into your computer; it will help you find out more about it. I have seen it to be very effective for children with these kinds of sensory issues. A pitfall that some parents can get into when they try it is that they do not always do it as “prescribed.” The method requires you to do it every two hours for two weeks. It only takes a minute or two. Try it out.
Flexibility: It could be that the change is too abrupt for him, and he needs more time to get used to the idea of covering his arms. To help with this, I suggest easing the transition by having summer tops with different arm lengths. Nowadays, you can find some very lightweight and cool long-sleeved tops, as well as three-quarter length sleeves. Use these on the next transition and through the following summer, so it is not so abrupt. Then, after a few weeks, mix in the regular short-sleeved tops. Set out on his bed each day, three different summer tops:
• A very light long, long-sleeved shirt.
• A three-quarter-sleeved summer T-shirt.
• A regular T-shirt.
Let him choose which one he is going to wear that day. This gives him control over when and how he will try moving to a regular T-shirt. Often, our children become more flexible in trying new things when we go at their pace and give them a sense of control over the change. Have fun with this new experiment and celebrate each choice he makes.
See you all in the next issue.
Kate C. Wilde has spent the past 30 years working with children and adults on the autism spectrum and their families, as well as with therapists, educators, and schools. She is the author of the acclaimed books Autism Abracadabra: Seven Magic Ingredients to Help Develop Your Child's Interactive Attention Span, Autistic Logistics: A Parent's Guide to Tackling Bedtime, Toilet Training, Tantrums, Hitting, and Other Everyday Challenges, and The Autism Language Launcher: A Parent's Guide to Helping Your Child Turn Sounds and Words into Simple Conversations, and is renowned for the well-attended courses she teaches throughout the U.S., Europe, and Asia. Her YouTube autism quick-tip videos, delivered with her trademark infectious enthusiasm, have garnered a worldwide following. �� www.katecwilde.com �� www.autismcrisisturnaround.com
Planning a Vacation Just Got Easier for Families Who Need Accessibility
By Lorraine Woodward
For most, planning a getaway is simple. But for families with a loved one who has a disability, it can be a daunting, time-consuming task. And if your needs extend beyond basic wheelchair access, it can feel nearly impossible.
Travelers with disabilities contribute $60 billion annually to the U.S. travel economy. However, less than 0.1% of short-term rentals are truly accessible.
That’s why a new partnership is changing the game. Expedia Group’s short-term rental platform Vrbo has teamed up with Becoming rentABLE, a Raleigh-based startup that exclusively lists verified accessible short-term rentals.
Redefining accessibility in
travel
Becoming rentABLE is expanding the definition of accessibility. It's not just about ramps or grab bars—true accessibility includes mobility, sensory, visual, auditory, cognitive, and neurodiverse needs, as well as accommodations for aging travelers.
Vrbo recently introduced eight new accessibility filters, allowing travelers to search based on specific needs. These updates were influenced by Vrbo’s involvement in the Expedia Open World™ Accelerator Program, where Becoming rentABLE was selected as an innovation partner in 2022.
And the need is clear: A Duke University MIDS Capstone survey found that 65% of travelers with disabilities worry about lodging accessibility, and 99% are concerned about transportation. These travelers take an average of six trips per year and spend over $3,500 annually—proving they are far from a niche market.
Small changes, big impact
To support hosts, Becoming rentABLE developed a free 10-minute online course to help short-term rental owners adopt inclusive design. The training covers simple yet impactful steps, such as installing a no-step entrance, widening doorways, or uploading clear bathroom photos, and the importance of writing accurate, detailed listings.
“These aren't just checkboxes,” says founder Lorraine Woodward. “They’re meaningful changes that can be the difference between staying home or making lifelong memories.”
About Becoming rentABLE
Becoming rentABLE is an online directory of verified accessible short-term rentals. Think of it as an accessibility-focused Vrbo or Airbnb. The directory’s goal is to certify properties that meet the needs of guests across a wide range of disabilities, such as mobility, cognitive, hearing, and vision, as well as aging travelers. For this brand, accessibility isn’t an afterthought; it’s the priority. . �� BecomingRentABLE.com
Mom Guilt and Misunderstanding: The Toll of Stigma on Mothers of Autistic Toddlers
By Tamar Varnai, MA, BCBA, LBA
Stigma does not only apply to autistic children, but also to their caretakers, in particular, mothers. In this article, I examine the impact of stigma on mothers’ mental health, the cultural explanations for why we feel “mom guilt,” and how community support can help ease mothers’ burdens.
You will find joys unique to parenting a toddler with autism. But for many mothers, this can be clouded by a sense of shame, primarily stemming from a lack of understanding from others. A sense of stigma, which exacerbates feelings of shame and bewilderment, often comes from within extended families and social circles, not just from strangers in public. Even though it can be a traumatic experience, moms can find solace and power with the right kind of support.
Stigma in the family
Limited knowledge about autism in many cultures translated into negative beliefs about mothers’ capabilities, which added an extra emotional burden for them (Kang-Yi et al., 2018). Instead of getting help, mothers can wind up
having to explain, defend, or even conceal parts of their child’s diagnosis from their own families.
Although extended family is often called upon to provide support, there is evidence to suggest that far too many families offer support. Certain relatives refuse to educate themselves about autism or lend a hand, leaving mothers feeling isolated and misunderstood. Occasionally, families are invited to events only if their autistic child isn’t present, or they’re not invited at all.
Such interactions can compromise a mother's sense of relatedness and enhance her perception of her child's disability as a loss. This is where a mother’s guilt can intensify because it is personalized, making the feeling of letting her family down a common denominator.
Collective Space: the deciding and the retreating
The struggles don’t stop at the door. Raising a small child with autism, there are many tears in public daily, and parents are even faced with ignorant questions from others about finding a “cure for autism.” Disruptive behaviors,
including stimming or meltdowns, are often mistaken for signs of poor parenting, leading to stares, remarks, or even the silent treatment (Papadopulos, D., 2021).
While taking care of their children’s needs, mothers of autistic toddlers are also confronted by the emotional impact of facing judgment from others who see them as neglectful or incompetent. Under such a spotlight, some have chosen to stay home more or dodge public transportation, giving up a social life to protect themselves and their children from negative experiences. This sense of isolation only serves to increase their feelings of guilt and anxiety.
The Silent Strain: Stress beyond the diagnosis
Every therapist visit, doctor appointment, and parentteacher conference is the product of a parent handling an emotional weight that most people have no idea they are even carrying. Mothers of preschool-age children with autism experience much higher levels of parenting stress when compared to mothers of children with other developmental disabilities, research suggests (Estes et al., 2009). This stress is closely related to emotional exhaustion and psychological dysfunction and is beyond the demands of daily life.
It doesn’t help that this level of stress often begins early, even sometimes before an official diagnosis is made. Many mothers are already experiencing symptoms of worry and sadness long before their children enter elementary school, generally when noticeable changes in behavior, communication, or development begin to unfold.
And, most importantly, this mental stress does not occur in isolation. The study says stigma heightens maternal stress, which is often compounded by isolation from social and professional support networks. Parents are less likely to seek help, talk openly about problems, or utilize the support offered if they feel that people are judging them or getting it wrong. If not addressed, these levels of stress can affect a parent’s overall health and quality of parent-child interactions, which can have a significant impact on outcomes.
Internalized stigma and mom guilt
Guilt is something nearly all mothers feel, but for the mothers of autistic children, it is compounded by cultural misunderstandings. Many moms internalize the message that they are to blame for their child’s differences, even if they know this isn’t true. They ask questions such as: “What if I had paid attention to the signs earlier?” "Did I overlook something?" "Am I doing enough?"
Research suggests (Zuckerman et al., 2014) that mothers of autistic children are also more likely to suffer from anxiety, hopelessness, and emotional exhaustion, particularly if they lack social networks or are socially marginalized in their communities. Mental health could take a battering from the constant juggling act of advocacy, caring, and emotional restraint. It can be challenging to break the cycle of doubt and guilt without targeted help.
How mindfulness helps parents cope with stigma
For many parents of autistic children, stigma can feel inescapable, especially when public misunderstandings prompt judgment. However, research suggests that mindfulness may offer some protection. Mindfulness, which is the ability to remain in the here and now and not judge, helps parents manage their emotions and shift their perspective, and keeps them from falling into shame or self-blame.
In a 2023 study that included 345 parents of autistic children, levels of mindfulness were negatively associated with affiliation stigma, or the internalized shame and isolation that parents feel as a result of public hostility. While of more importance to this study, mindfulness's effect on coping indirectly reduced stigma.
Mothers and fathers who were more mindful were less likely to use negative coping strategies, like avoidance or selfblame, and more likely to use positive ones, like problemsolving and seeking assistance. Such coping strategies significantly moderated the stigma level experienced by the parents (Zhang et al., 2024).
In practical terms, this suggests that mindfulness training can help parents change their perspective on their experiences, make better choices under difficult circumstances, refrain from taking undue responsibility for the guilt they are so often handed, etc. It may also help parents relax.
Programs that draw upon mindfulness modalities, when such teaching methods are available with active exposure and response prevention, which include mindfulness sessions, may improve parental mental health and stigma resilience.
Here’s what matters
The way to break that cycle begins with empathy and education. When we listen to caregivers free from judgment, validate their struggles, and challenge the misinformed and stigmatizing views that underlie stigma, we make room for
more humane and connected communities. In the process, not only are we helping the parents, but we are creating pathways for the autistic child to be successful and accepted, and feel comfortable.
References
Papadopoulos D. (2021). Mothers' Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study. Brain sciences, 11(3), 309. https://doi.org/10.3390/brainsci11030309
Rabba AS, Smith J, Hall G, Alexander V, Batty K, Datta P, Goodall E, Heyworth M, Lamb S, Lawson W, Lilley R, Reid K, Syeda N, Pellicano E. 'I'm sick of being the problem': Autistic mothers' experiences of interacting with schools for their autistic children. Autism. 2025 Apr;29(4):1034-1046. doi: 10.1177/13623613241297223. Epub 2024 Nov 24. PMID: 39582183; PMCID: PMC11967083.
Kinnear, S. H., Link, B. G., Ballan, M., Fischbach, R., (2016). ‘Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives. Journal of Autism and Developmental Disorders 46(3) https://www.researchgate.net/ publication/286649765_Understanding_the_Experience_of_Stigma_for_ Parents_of_Children_with_Autism_Spectrum_Disorder_and_the_Role_ Stigma_Plays_in_Families'_Lives
Wang, Y.-N., Lin, Q.-H., Meng, D., Wang, J., Xu, H.-P., Wei, W.-H., & Zhang, J.Y. (2024). Relationship between mindfulness and affiliate stigma in parents of children with autism spectrum disorder in China: The mediating role of coping styles. Asian Nursing Research, 18(2), 89–96. https://www.asiannursingresearch.com/article/S1976-1317(24)00032-X/fulltext
Tamar Varnai, MA, BCBA, LBA, is the Clinical Director at Move Up ABA Therapy. With extensive experience in applied behavior analysis, Tamar is passionate about empowering families through evidence-based interventions and culturally responsive care.
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LIFE WITH ASPERGERS Celebrations and Me: Managing the Holidays with Autism
By Julie Day
Ihave seen posts on social media about autistic children not having anyone turn up for their birthday parties or not being invited to one. These made me recall what birthdays were like for me when I was growing up.
I don't recall being invited to any parties. I'm not sure if other children in my class had them or not. I know that I never did. I don't even remember if my brother had parties either. My family did celebrate with me, and I got plenty of cards from relatives. The first birthday party I remember having was for my 18th. We invited not only my close family on my mum's side (my dad's family lived too far away), but my best friend, her mum and stepdad and her friend. What I recall was me being in charge of the music, not wanting to budge and go and dance. I think I might have done in the end. I now know that was my autistic side appearing. I wanted to be in charge of something and not want anyone else to change it.
I had a party for my 21st birthday, too but can't recall if anything significant happened at that. I know I was also invited to my friend's 18th, which was a sit-down meal held in a local hotel. The next big birthday was my 30th. I know I went out for a meal with my work colleagues to a local Greek restaurant. I think I had duck or goose, which proved to be too oily and fatty for me, and I had stomach upset either that night or the following day.
We also celebrated birthdays at work with a card, cakes and treats from the birthday person. I took cakes when it was my birthday. When I became intolerant to dairy and gluten, I took in regular cakes for everyone else and special glutenfree ones for me.
The next occasion was my 40th. My family and I went to a popular restaurant in London. The only other parties I went to were family ones, namely my grandmother’s special birthdays, which my mum organised. I didn't have to go anywhere as they were held at our house, which was only a ten-minute walk from where my nan lived. My mum had meals out for her special birthdays.
Christmas was different. I know a lot of autistic children either don't like Christmas or aren't interested in it. I didn't mind it. I think because my mum included my brother and me in the celebrations. We weren't a noisy family so that helped. I knew if anyone would be coming. My nan usually visited.
One year, my nan and granddad came and stayed. I remember that year well. My nan and granddad came with me to the local shops, and I bought a poster of my favourite pop group at the time. I would be included in putting up the decorations and the tree (which was not a real one).
We had our own routine for Christmas Day. My mum would cook the meal (not turkey for the first several years as we didn't like it) for 1pm. My brother and I would open our big presents at the start of the day after breakfast, and then once we had our meals, we could open our smaller presents, which were under the tree. Then we would play games such as Monopoly or cards. We'd have snacks and mince pies later on. Then, at about 5pm, we would have tea of cold meat, sausage rolls, and salad. After that, if my nan was with us, then my mum would walk her home.
The next day, when we were little, we would receive small presents from Mum and Dad, so we wouldn't feel that the
day was an anti-climax after the main event. That stopped when we reached a certain age. The other thing that changed was we kept the presents downstairs either under the tree or on the table for the next morning. This was until 1992 when we were burgled at Easter. After that we kept the presents upstairs in our rooms and brought them down in bags on the day. This routine stayed for years even when it was just mum and me. When it was just us, as we opened our presents, we would have The Carpenters Christmas CD playing in the background. I would help Mum with the vegetables and cook the potatoes once she had prepared them. In later years, instead of playing games, we would go and have a nap.
When I was at work, we certainly celebrated Christmas. The area where I worked was the main reception where students and staff came in for administrative help. It was a big area. I would help putting decorations up as well as a small tree. Also, a few times I was asked to go out with others at lunchtime to the local pubs and restaurants to collect Christmas menus so we could work out where we would like to go for our meal. The team’s Christmas dinner was quite nice, although looking back, I can see my autistic side coming out then when I would sit next to my colleague, whom I knew the best, and wouldn't change seats.
The other occasion I know my autistic side came out at was the work Christmas party. We would have buffet food and music. I would dance a bit, talk to others, then go and sit down for a rest. I now know that was probably my sensory challenge to loud noises. When I find it gets too much for me, I seek out a quieter area. That all ended in 2010 when I was made redundant. Do I miss it? I’m not sure.
Things changed drastically when Mum passed away in 2022. It was my first Christmas without her. Thankfully, my brother, sister-in-law, and nephews came on the big day. I was the one who prepared the food. I prepared a buffet lunch for them, as I'm not skilled at cooking roasts. They did this for two years until last year, when they came for Boxing Day (26th December). It was the first Christmas Day on my own. It felt strange. My youngest nephew had converted to Islam the year before as he is now married to a Muslim and they don't celebrate Christmas. Also, the day was her mum's
julieaday.co.uk
birthday. I am not sure if I like having Christmas Day to myself or not. We will have to see what happens this year.
Here are my tips to help people diagnosed with autism cope with the holidays.
• Ask them if they want to be involved in the preparations or celebrations.
• Ask them if they want presents, and if so, when do they want to open them?
• Ask them what they want to eat on the day. It's okay if they want to stick with their safe foods.
• If relatives want to visit, do ask your child if they are okay with them coming. As I had often visited my nan with my mum at the time, I was comfortable with her coming.
• When you have worked out a schedule for the main day, write it up and post it where everyone can see it.
Julie Day lives in South East London, UK. She writes magical realism fiction for adults and children, and her children's books feature autistic characters. She has also published her memoir Endocarditis – My Journey' About Coping With This Rare Serious Infection And Its Recovery. She also writes short stories in anthologies and fillers for magazines. She blogs about her life with Asperger’s and her memoir.
julieaday.blogspot.com
@juliednomo
REFLECTIONS
REFLECTIONS
The Journey
By Gary Shulman, MS, Ed
Cherubic child my brain did conjure
Perfection of body and soul
But that was not to materialize
Though that was my hoped for goal
A child was born unique you see
So many needs yet to be met
Morph my dreams must verily do
Interventions this warrior must get!
So the journey began and fighting we did
Each day brought another new battle
And from our minds preconceptions we rid
Our determination they’d tried to rattle
Steadfast we remained in playing the game
Of entitlements, programs and more Ten steps forward, HOORAY! HOORAY!
Then 20 back and you’re knocked to the floor
So you get back up, dust off the debris
Barrel forward with your vision so true
Your child, is your child, is your child with LOVE!
So truly it’s all you can do!
The journey goes on with failures still
But victories galore as well
Nobody has that crystal ball
The future no pundit can tell
So hope and dream and shoot for the stars
The fight is worth taking a stand
You’re not alone, we’re there to help
Just reach out and you’ll find a hand
Gary Shulman, MS, Ed has spent a lifetime supporting vulnerable families and children. He began his career working with children with and without disabilities in an inclusive Head Start program in Brooklyn, NY. He then transitioned to becoming the Special Needs and Early Childhood Coordinator for the Brooklyn Children's Museum for 10 years. His passion for advocacy grew as he worked more and more with parents of children with disabilities. For over 24 years, he has advocated for the needs of these parents as the Social Services and Training Director for Resources for Children with Special Needs, Inc. in NYC. During the last years of his working life, Mr. Shulman served as a private Special Needs Consultant, conducting hundreds of training sessions throughout NYC and beyond to help parents and professionals find and access the services and systems required to facilitate maximizing the potential of their children with disabilities. Now retired in Arlington, VA, but still supporting vulnerable families, serving as an Advisory Commissioner for the Arlington Partnership for Children, Youth and Families. Gary continues his workshop presentations virtually and now also enjoys sharing the poetry that he passionately writes with the goal of leaving this world a better place one word at a time.
Valuable FAQs about Guardianship
By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
When should Guardianship be considered for a loved one with exceptional needs?
Guardianship needs to be considered in two scenarios:
• While the parents are still alive
• When the parents die
Let’s consider the scenario of the parents passing away and your child still needing someone to care for them. That next person is considered a Guardian. This decision can be challenging for many parents, and if it is for you, you are not alone. We have developed a Guardian Selection Tool to help parents make that decision. Once you make that decision, you will have to include that information in your Will. A Will is a legal document that tells the court system your wishes, and one of those wishes is who you want to make decisions for your child legally, called a Guardian.
The second type of Guardianship is when your child reaches the age of 18. At 18, they become a legal adult, which means all their decisions are their own, and they are legally responsible for those decisions. This includes decisions about money, decisions about their education, and certainly decisions about their healthcare. If your child needs help in making these decisions and, more importantly, understanding the impact of these decisions, then you may want to proceed with Guardianship and begin that process by the time your child reaches the age of 17.5.
One of our team experts, herself a mom of an adult with a disability, poses a simple question to all parents when discussing the need for Guardianship, “What is the intellectual or developmental age of your child?” She goes on to explain that if your answer is 14, or 15 or 9 or 3 years old, then your next question should be, “Would you allow
your nine-year-old to make decisions about their own health care, get a credit card, enter into a binding contract, or conduct their own IEP?” If your answer to that is “of course not,” then you may want to consider becoming your child’s guardian when they turn 18, so you can legally stay in that parental role.
Please know that if your answer to the question is age 15, and your child is continuing to develop their decisionmaking skills, Guardianship does not have to be forever. You can become your child’s Guardian when they turn 18, and if by the time they are 30 years old, they have the ability to make their own decisions, you can petition the court to rescind the Guardianship.
I have heard there are different levels of Guardianship, is that true?
In one word, Yes. You can apply for different types of Guardianship. You can apply for General Guardian, which is considered Guardian of the Estate (which is their money) and Guardian of the person (day-to-day decisions). You can also apply just for Guardian of the Estate or just for Guardian of the person. You can even apply for Limited Guardianship. Wow, all of a sudden, this decision became much more complicated, but let’s dive deeper and determine the reason behind each type.
General Guardian is going to be used when someone does not have the capacity to make decisions regarding their own care and their own money. This type of Guardianship is rarely used for individuals with a disability because most of the time they intentionally do not have money in their own name, so that they can qualify for government benefits. Rarely does an individual with a disability need a General Guardian or a Guardian of the Estate because they don’t have an estate; however, they often need a Guardian of the person to help make decisions about health care choices, housing decisions, and other day-to-day living options.
Limited Guardianship is used when parents want to preserve specific options for their child. One of those options that is most widely discussed is the ability to drive a car and attain a driver’s license. If driving a car is an option you want your child to have, then you need to “carve” that option out of
Guardianship. You can still be your adult child’s Guardian and preserve their right to have a driver’s license; you just need to be deliberate and communicate this as you go through the Guardianship process.
In our next issue, we will discuss whether you should hire an attorney to help you with Guardianship and any alternatives to Guardianship.
Contact a financial advisor who specializes in serving families with special needs for more information on how to prepare for the future. The team at A Special Needs Plan is driven by their purpose of Leading Families to Independence through an ongoing, multi-generational plan. We are passionate about families confidently moving forward.
Autism Advocacy Interrupted is more than a book it’s a wake-up call for anyone who cares about the autism community.
In today’s advocacy landscape, families often face a storm of competing voices: infighting, ego-driven agendas, and fragmented messages that do little to meet real needs. Jeanetta Bryant, both a mother and seasoned advocate, has lived through the confusion, frustration, and heartbreak this division causes. With unflinching honesty and compassion, she lifts the veil on the hidden fractures in the movement, introducing four distinct advocate types Revolutionists, Trailblazers, Mavericks, and Disruptors.
Through these portraits, Bryant invites readers to examine who they follow, why their message matters, and whether the noise is helping or hurting the very people we claim to serve. She challenges us to trade division for unity, volume for vision, and personal agendas for purpose.
This is not a call to choose sides it’s a rallying cry to rebuild the foundation of autism advocacy so that dignity, wellbeing, and future opportunity for those on the spectrum come first.
If you’re ready to reflect, engage, and make a difference, Autism Advocacy Interrupted will give you the insight, courage, and clarity to be part of lasting change.
