A Mom’s Response to That New Yorker Article About Autism

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The following passage is from an article recently published by The New Yorker:

For parents of autistic kids, awareness is desperately important. It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

Many throughout the autism community have been offended by the complete insensitivity and demeaning nature behind a statement that equates the eyes of autistics to black mirrors.

What a heartbreaking reality we are faced with when we live in a society that is still so quick to further perpetuate such negative stereotypes associated with individuals with autism. That they are some how less than. Vacant and devoid of the ability to experience rich thoughts and emotions…

Soulless?

When my son, Leo, was born, and he was placed into my arms, the very first thing I noticed were his eyes. I stared into those big, expressive eyes in wonderment — blue at the time, they have since turned to a beautiful shade of green. And each time I look into those eyes, I see his soul — and everything that is precious and unique about my sweet boy.

Leo may have limited speech. He may have trouble communicating and expressing himself in the way we as neurotypicals are accustomed to and expect. And Leo does have autism — but his eyes are not black mirrors.

They are a gift I marvel at each time I peer into them.

Ellie's son Leo

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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42 Things Parents of Kids With Autism Would Tell Parents Who Just Got the Diagnosis

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Your child has just been diagnosed with autism.

You, the person who loves that child most, are probably feeling a lot of things right now.

Maybe you don’t know what to expect, and maybe that scares you. You’ve talked to doctors and therapists and loved ones, and they all have a lot to say. You’ve Googled and Googled and Googled. But have you talked to other parents who have been in a similar position? That’s where we come in.

We asked our readers who have a child with autism spectrum disorder (ASD) to share one thing they’d tell a parent who’s just received the diagnosis. Of course, every child and experience is different, but we hope something below resonates with you.

Here’s what they told us:

1. “Getting a diagnosis does not change your child. Your child has always had autism, but you just got the name for what’s been going on. I was so scared of that diagnosis until I realized it changes absolutely nothing about who my child is and will be.” — Emily Matejic Souders

2. “There is nothing ‘wrong’ with your child; his brain is only wired differently. You will be his best advocate in all things!” — Jodi Shenal

3. “Take a moment to take it in and express whatever emotions you feel; it’s OK and doesn’t make you a bad parent if you feel devastated by the diagnosis. That will soon pass as you educate yourself as much as possible. Surround yourself with other autism families; they will be your best friends and a kind of therapy for yourself — they get it. Access whatever supports are available for your child that you feel will help. And know your child will completely change the way you view the world and make you a more compassionate, kind person. Celebrate every milestone and never give up hope. Encourage your child, and they will amaze you. Some days will be hard and other days will be triumphant; you will all be OK.” — Kim Hall

4. “Just like with neurotypical children, no two [children with autism] are the same. Take it one day at a time. I know it seems daunting, but it’s a beautiful ride.” — Sam Thayer

5. “Believe in your child and believe in yourself. Use your resources… Remind yourself often that you’re a good mom/dad and you know your child best.” — Katie Ortiz

6. “Just remember to go with what works for you and your child. Other people may not understand, but that’s OK; they don’t need to.” — Rebecca Engelmann

7. “You are the one who will make the biggest difference. Educate yourself and don’t let anyone limit what your child can accomplish.” — Susan Rood

8. “It doesn’t change the love you have for your child. It won’t stop them from achieving in life, but the journey might be a little difference. Embrace your child and try to enter their world.” — Gemma Lyons

9. “Get to know what supports and services are available in  your area. Find someone who has been on this journey to talk to. Don’t be afraid to ask questions; ask for help… Remember to take care of yourself.” — Tricia Brown

10. “Focus more on bringing out the good in them… Most ‘bad’ behaviors are ways of them expressing and speaking to you. Just look and listen. Also join support groups because you’re not alone in this.” — Barbie Rivera

11. “A diagnosis doesn’t change your child; it just gives you more of a window to understand them.” — Cassandra Coogan

12. “Just because the words coming out of your child’s mouth don’t necessarily make much sense to you doesn’t mean they aren’t meaningful for your child.” — Cheryl Soltero Egher

13. “No two children are alike, but many parents feel the same. We understand, and sometimes friends and family won’t, but that’s OK; you can ease them in. You’re the only expert on your child.” — Ronda Landes

14. “Take time to wrap your head around the diagnosis. Then, when you’ve come to terms with it… read, read, read. Do all the research you can.” — Theresa Beaudry

15. “Embrace this journey; shed tears, be mad, get frustrated… but above it all, learn to embrace. Learn and always love.” — JoJo Agnello

16. “Talk to someone who has started this journey before you. It’s OK to take notes, it’s OK to ask the same questions over and over until you understand.” — Michelle Oldenburg Fong

17. “Take it slowly, go at their pace… Remember, if they feel loved and understood, they will be more able to understand the world around them… Remember you are an amazing, loving parent trying your best, so give yourself a break. Start each day with a new start. Love each other.” — Emma Elizabeth Sobey

18. “You know your child better than anyone. Trust your instincts. Do the research, but also listen to that little voice inside. And then make the [teacher/therapist/administrator/doctor/specialist] listen to it too. That’s how you will find your tribe, build your team and help your child.” — Chris Stormborn Krasovich

19. “They will always be your baby, and a diagnosis is only there to get them the help they need. It doesn’t change who they are.” — Leidy Jesse Garcia

20. “There is so much hope for your child.” — Meg Naughton

21. “Welcome to the tribe! You are not alone in your fear, sadness, confusion or worries about where your child will fit into this world. Those of us who have journeyed for days, months or years have had or still have those days. Reach out to your community, find local Special Olympics groups and take pride in every accomplishment, no matter how small it may seem to others. You are your child’s best advocate and cheerleader; you got this!” — Sarah DeMartino

22. “Life isn’t over; in fact, you’ve been given a key to slowly unlock his/her potential. Take care of today, and don’t worry about tomorrow. It will wait until you get there. Just keep loving your special one.” — Tabitha Truchon

23. “Educate yourself. Do the work. Together. This is a journey you have to embark on as a family with your child. All of you will learn and grow in ways you never imagined.” — Georgina L. Acuna

24. “Don’t let anyone dictate how you should feel. Don’t let anyone tell you you shouldn’t hurt. What you feel is what you feel. Honor your heart.” — Laurie Fiander Juarez

25. “You got this!” — Melissa Cote

26. “You’re about to learn a whole new language, and even though it will be hard sometimes, there’s lots of help for you. Let me give you a hug because it’s going to be OK.” — Ann Jamison

27. “Remember that a diagnosis is a starting point. You will have peaks and valleys, just like you would with any other child. The diagnosis changes how you can help your child; it doesn’t change your child.” — Lisa Kasprzak Smith

28. “Don’t be nervous. People are going to say things that are rude and disrespectful; ignore that.” — Tami Birk

29. “He may not hit his milestones on time or at all, but when he hits his own personal milestones, it makes it all the more exciting.” — Kimberly Petroni

30. “Adjust your expectations — not of your child, but of yourself.” — Meredith Smolen

31. “Look for the cues your child is giving you. It’s a puzzle, but there are clues and you don’t have to figure it out alone. There are so many great people out there who can help you. You also don’t have to immediately go do every [therapy] out there. One thing at a time works, too.” — Carrie Mamantov

32. “Discover and nurture their strengths.” — Sally Meadows

33. “Breathe and enlist help.” — Katie McCabe

34. “It is OK if you feel sad right now; in time, this will pass.” — Miriam Gwynne

35. “If someone tells you to mourn and that doesn’t sit right with you, tune them out.” — Amy Hunt

36. “It’s going to be OK.” — Kelly Renee Smith

37. “It is easy to be in denial, but all it does is hurt your child. Accepting it is hard at first, but once you do you can move toward getting the help your child needs.” — Kim Nguyen

38. “Don’t compare… Don’t compare your child to other kids on or off the spectrum. I know you want to know what your child’s life will be like, but comparing won’t tell you. Don’t compare your reactions and feelings to the reactions of your partner, your parents, other random autism parents on the Internet, anyone. Your child, your life, your feelings are wonderful, worthy and valid.” — Jessica Charlton

39. “Reach out. To your family, your friends, local ASD support groups for parents. The best thing you can do is to bolster your support system. You will need them.” — Elizabeth Campbell

40. “Never listen to anyone who puts limits on your child… ever.” — Sara Coats-Kimbrell

41. “Always presume competence… Teach your child we all have strengths and weaknesses, and sometimes we need a little more assistance… Surround yourself with others who unconditionally accept and support you… Dream big and shoot for the moon with unconditional love, and you will be amazed at how far they and you will go.” — Sara Young Spoerl

42. “Congratulations! You’re in for a wonderful ride. It’s going to be bumpy, so hold on tight, but you’re going to be amazed at the different perspective your child will open your eyes to.” — Christian Osborn

We wanted to end on this note:

43. “I’m autistic and I don’t have kids, but I would like to say something: don’t be sad, don’t think this is the end, don’t treat us like a disease, don’t search for a cure: just love and accept us. It’ll be hard sometimes so be strong, but in the end, it’s worth it.” — Arianna Nyswonger

What’s one thing you’d tell a parent whose child just got an autism diagnosis? Let us know in the comments below.

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3 Late New Year’s Resolutions I’d Like the Autism Community to Make

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I have three resolutions I’d like members of the autism community to consider adding to their New Year’s resolution lists for 2016.

1. Let’s resolve to remove the word “blame” from all discussions of autism.

That means no more headlines “blaming” autism on genes/environmental factors/take your pick, or any more online or in-print discussions about “the autism blame games.” The word “blame” is potent, often poisonous and often intertwined with “shame.” The reason for the “blame” ban is simple: when we use the word, we send the message to autistic people that their autism is something to be blamed for and something to be ashamed of. No one wants to be blamed for their identity or their existence. Parents don’t want “blame,” either, for it can set off a spiral into guilt and other corrosive emotions. When we see the word, let’s explain to the writer or the speaker why it’s not OK to use it in this context.

2. Let’s resolve to try to treat each other with respect when we disagree.

I am not talking about censorship, not disagreeing or not standing up for critical issues, like civil rights. Civil discourse is what I’m after. I think the guidelines of civility set out by the University of Texas at San Antonio are a good start. I like the way the discussion about a thorny autism issue unfolded with respect on the blog Diary of a Mom. That said, I think it’s helpful for those of us who are not autistic to recognize that some autistics have difficulty communicating and may come off as tactless to some, but that’s not their intention. I’d like all of us to consider that when we respond in words and tone that are charged and disrespectful, we trigger anxiety (often and especially for people on the spectrum) and ignite division (often and especially between autistics and parents). When we show respect to each other, we speak from strength as we demand respect in courtrooms, classrooms, legislatures and the world at large.

3. Let’s resolve to make connections this year.

Instead of automatically hunkering down with people who share our worldview, let’s find some commonalities with people we don’t automatically agree with. While we may not agree on the role of genetics or the value of various autism therapies, perhaps we can agree that, say, providing augmentative communication devices to autistics is a good thing. Working together on some things may make it easier to fulfill resolutions #1 and #2, after all.

Another way to fulfill this resolution is to reach out to someone with a different perspective. That’s why I asked a few people (mainly writers and activists who are autistic or parents of autistic children) for their opinions before trying to publish this piece. Their responses challenged me to rethink this piece and reinforced my conviction that we need to create safe spaces online for dialogue.

These commenters expressed empathy and advocacy for people with a different perspective. A writer on the spectrum suggested I consider “that parents often feel blame when discussion turns to cause, too.”

A parent advocate reminded me, “While mutual respect is a wonderful goal and is tremendously important, it can so often be a false premise — i.e. parent or so-called advocacy organization does something horribly dehumanizing to autistic people and then autistic activists are chided for not being ‘respectful’ of those people when standing up for their own and their community’s dignity and most basic civil rights. So I’d caution that it’s far more nuanced than it sometimes appears.”

Having learned from them, I’ve asked myself two questions before commenting and posting: “Do I want to change this situation or do I want to be right? Do I want to react or do I want to learn?” I’ve also learned that when someone reacts in a way that hurts me initially, I need to pause, leave my hurt on the shelf, then come back and ask myself if there is something I can learn from them.

I realize my resolutions are idealistic, akin to asking for peace on Earth in an election year. But as I wrote them, I kept thinking of two quotes. One is from Martin Luther King, Jr.: “We must come to see that the end we seek is a society at peace with itself, a society that can live with its conscience.” The other is from a holiday hymn: “Let there be peace on Earth and let it begin with me.”

Personally, I resolve to start the new year with a dose of idealism and end it, I hope, with a larger measure of civility.

The Mighty is asking the following: What’s one wish you have for the upcoming new year related to your experience with disability, disease or mental illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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People With Autism Are Tweeting Photos of Their Eyes to Make an Important Point

Update Monday, Jan. 25: On Monday morning, the blogger who created the hashtag in this article, updated her blog to say she will no longer promote its use because she does not want to add to the stigma around autism. We have updated the story accordingly.

A New Yorker article has sparked outrage in the autism community.

The article, called “Seeing the Spectrum,” published online and in the January 25 issue of the New Yorker, was written by Steven Shapin and attempts to trace the history of autism spectrum disorder and how it has been shaped by activism. One passage in particular has upset many in the autism community.

The passage reads: 

For parents of autistic kids, awareness is desperately important. It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.

The phrase “black mirrors” offended many and inspired the hashtag #NotBlackMirrors on Twitter on Saturday, Jan. 23.

 

People have since been tweeting photos of their eyes or the eyes of loved ones on the spectrum to show that they are not black mirrors and to try and get the publication’s attention.

See some of the photos from the hashtag below: 

 

 

 

 

The Mighty reached out to the New Yorker for comment but has yet to hear back. 

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To the Worried Parents of a Child Who Just Received an Autism Diagnosis

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Dear worried parent of a newly diagnosed child,

Let me just start with, I know how you feel. No seriously. In this past year, I have had not one but two of the most special little guys receive a whole slew of diagnoses. My life now consists of alphabet soup. ASD, GAD, SPD, EoE, OCD, ST, OT, FT, ABA, ECA, Hab, I could go on but I won’t. Besides, I’m sure you’ve heard all that in the random papers you were handed. You may not know what they all mean right now, but you will.

That’s not why I’m writing this for you, though. There are lots of wonderful materials that can help you in your first few minutes, days and weeks in the special needs parenting club. For now I’m not going to bother with that. Let’s just take a step back from the “what do I do now.” You are going to figure that out. That will come as it comes, and you’re going to do your best. That’s just how it is.

What I want to know is, have you wondered what autism feels like to your child?

What about how it feels like to an anxious little boy, one who only a year ago was nonverbal? I have. When I can stop planning, calling, scheduling (doctor’s, therapists, support coordinators, teachers, pharmacies, you name it), I stop and think. How are they really feeling? Are they as overwhelmed right now as I feel?

Today started out as one of the bad ones. You’ll hear about these; our kids have ups and downs, good days and bad days. He had meltdowns before school, his first meltdown during school, and even one with his favorite therapist.  After his second therapy, his wonderful speech therapist came out to have the summary talk.

Let me just take a step back and say my son was barely talking at this time last year. He now does speech at home and school , and works on things like disfluent speech (stuttering because the words come out faster than he can manage), pronouns (he versus she) and increasing his sentence length. He is a smart boy, but he goes into his own place sometimes. She told me she knew he was having a hard time today, so she played a game. What makes me mad or sad? She went first and they had to take turns (to work on conversation skills, too). These are the four things he told her:

Sometimes I get mad when “sun gets in my eyes. It hurts. It’s too much.”

Sometimes I get mad when “it’s too loud. Noises hurt my ears. I don’t like it.”

Sometimes I get mad when “Mandy and Steph (his habilitators) make me do things that are too hard.”

Sometimes I get sad when “Boy (from his school). He’s not nice when he doesn’t listen (Listen to what). That he’s my friend. To stop being mean.”

You may think, wow, that’s sad. Yes, I wish everything was perfect and my son couldn’t name anything that made him mad or sad. But you know what, I’ll take him being able to express his feelings. Mad and sad are two prominent feelings in our house between both of our boys. There was a time not that long ago that he had hour-long sensory meltdowns because he couldn’t tell me what was wrong. I learned to read him when he couldn’t express anything. You will, too.

You know what, though, he pretty much hit the nail on the head. A boy who only a year ago could say just a few words told a non-family member how he feels. And it’s a pretty good summary if you ask me. His senses feel out of whack, he’s overwhelmed, he doesn’t always like learning new things that are hard and he is having a hard time with peers.

So new parents, please take a step back from the running around, scrambling to do this or that. We all know we have to do these things to get the help they need, but there’s another side you need to remember. Think about how your child is feeling. Ask them.

And new parent, from a parent not even that much further down the road than you, please have hope.

Two brothers playing in sandbox with toy cars

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Early intervention resources courtesy of Autism Speaks:
100 Day Kit for Newly Diagnosed Families of Young Children
100 Day Kit for School Aged Children

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When Reaching Milestones on Your Child’s Autism Journey Is Like Taking a Road Trip

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Ahhh… the family road trip. When everyone gathers their devices, snacks, blankets and any other necessary items to keep us all sane while we spend 2.5 hours together… in a closed space… all of us… with no escape. Within 10 miles, the complaints begin: “Turn the heat down!” “Turn the heat up!” “Stop crunching so loudly!” “How much longer?” “Who stinks?” God help me, I hope I packed a bottle of wine and it’s easily accessible.

As we drove along, I kept watching the mile markers along the side of the road, the number increasing with each and every mile we drove. I have often seen these little green signs along the road, ticking off the miles of our journey, and wondered in this day and age, with all of our devices and gizmos like GPS, Google Maps, etc., would a time come when mile markers are no longer necessary? Would they go by the wayside with the 8-track player and the horse and buggy?

Mile markers serve several purposes:

They tell you where you are on your journey, which can especially come in handy when a squeal of “I need to pee and it’s an emergency!” is shrieked in your ear so you can quickly Google the closest rest stop near mile marker 44. Mile markers may also be necessary in a “true emergency” when someone is in actual distress and in need of assistance, by pinpointing the approximate location so assistance can arrive in a timely manner.

Mile markers typically coordinate with exit numbers. So if you pass mile marker 67, you know that exit 67 is right around the bend. You also know you saw a sign that at exit 77 there is a Sheetz, so you then can pray that the “emergency” in the back seat does not become a “true emergency” for another 10 miles.

Mile markers also tell you which direction you are heading. On most interstates, mile markers increase as you head north, or if you are traveling east to west, the mile markers increase as you travel east. Mile markers are a good reminder, in case you find yourself day-dreaming while singing to Adele, that you are heading in the right direction on your journey.

I have often described my son Ryan’s autism diagnosis as a “journey.” A journey that our entire family is taking to a place none of us have ever traveled before. On this road trip, I often find myself in the driver’s seat traveling on a road I am unfamiliar with. When I was cruising down the road with only my oldest son in the back seat (who is neurotypical), I don’t think I paid much attention to the mile markers as we traveled along, because I had nothing to compare that first journey to. But with Ryan, it seemed that at every corner we rounded, every hill we ascended, every exit we passed, I was constantly monitoring how far we had gone and how far we still had to go.

“Oh, we just passed mile marker 10, we should be quickly approaching the exit that will lead to eye contact.” Yet, when we sailed passed exit 10 and eye contact was nowhere in sight, I just held my breath for exit 11, assuming that mile marker was off by a mile or two. Exit 11 came and went, and I didn’t see behind those beautiful blue eyes.

The next mile marker assured me it would only be another 20 miles or so until echolalia got dropped off at exit 30 and more pragmatic language would join us on our road trip. Wrong again. Echolalia hung around for another 100 miles or so, and I tried hard not to look in the rearview mirror at the exit I felt certain we missed.

The pediatrician and all the childcare books assured me that around exit 52, there would be friends waiting to greet Ryan. As I slowed down to finally pull off the exit ramp, I looked up and exit 52 was as empty as the last 51 exits. There was not a friend in sight. I tried to assure myself that these friends must have taken the wrong exit and we would pass them up the road at exit 53, but exit 53 was as isolated as all the others.

As we continued down the road, I reminded myself that kids traveled at their own pace, their own speed and that not every child reached a particular exit at the exact same time as other kids their age. But when so many mile markers passed by with so few exit stops and little progress was being made, I felt terribly lost. Where was that Waze app 10 years ago when I really, truly needed it?

Looking back, it’s funny how many mile markers and exits we flew by that I have tried to forget over the years. Parts of this journey that were unfamiliar to me were scary and confusing. It was like looking at a map upside down. I was terrified that every exit we missed meant it was going to be harder and harder for Ryan to reach his destination. There were so many mile markers that pointed to exits that looked scary and abandoned because I had never taken those exits before.

It’s a lot easier to remember the many, many mile markers on this journey that assured me that my son and I were both heading in the right direction.

There was the mile marker where he wrapped his arms around me for the first time and I knew, without a doubt, that the love and sympathy exit had not been missed. In fact, I was so taken back by this sight on our journey that I wanted to take the emergency personnel exit so I could turn around and relive that moment over and over again and risk getting that fine that the sign warned me about.

Even though we missed the pragmatic speech mile marker at exit 30, we found another route to get there that just took us a little longer. To this day, I am amazed at how far Ryan has come at his own pace and the beauty I have seen by taking this detour. There is nothing I love more than hearing words come out of his mouth that I need to look up the meaning of on Wikipedia. I am so grateful for the sights I would have missed had I taken the quick route.

As we passed the soccer and baseball exits where some other boys got off, we kept going until one day Ryan found the music exit and told me to take this exit. The music exit was part of Ryan’s journey, and thankfully he knew it and has never looked back. Ryan has no regrets that he missed those other exits because he was never meant to take them.

Of course as with any journey, there were road hazards, blind spots, construction delays, detours and drivers that tried to reroute me from helping my son on his journey. But there were also beautiful roadside vistas, funny road trip stories, one-of-a-kind sights not to be seen anywhere else and amazing people we encountered along the way. People that pointed us in the right direction when we felt lost. All of these bumps in the road acted as reminders of where we were and where we were heading, without relying solely on those mile markers.

Ironically, I have been the driver on this journey and Ryan was my navigator, but, like any driver who thinks they know where they are going, I put more stock in those mile markers, in signs that were placed along the road by strangers, than I did my son. Unfortunately, more often than not, I got more caught up in those mile markers and exits I thought we should have taken than I did the person holding the map to his journey.

Ryan knew where we were all along. He knew where we were headed, and he knew how we needed to get there. I just didn’t see the signs. Not because I wasn’t looking, but because I was looking the wrong way. I spent too much time looking in the rearview mirror worried about what he missed, rather than looking at the expansive road in front of us on this journey to see what was lying ahead.

Fortunately, Ryan wasn’t keeping track of the mile markers or the exits. He has always had his eyes ahead, on the destination, and no one knows better than him exactly where he wants to go and how he wants to get there. I guess it’s time to let him drive.

boy riding on wheeled vehicle on track
Kathy’s son Ryan

Follow this journey on The AWEnesty of Autism.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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