My Autism Story: The Boy Who Feels No Pain

Sheri Reed
Tweens & Teens
16


Dawn's son Jon at a museum
When her son Jon was only 2, Dawn (CafeMom Dmsfr) walked into the family room to find her toddler reading Edgar Allen Poe's The Raven.

"Nothing will creep a person out more than the sound of your two-year-old reading that piece of prose," says Dawn, a psychologist.

That was among the very first clues that Jonathan, now 11, was different from other children. But it certainly wasn't the last. A year later, he was diagnosed with Asperger's Syndrome, a very high functioning subcategory of autism.

Ever since that day, she and her husband of 13 years, Ed, have looked forward, seeking out the resources, support and treatment to help her son "be the best person he can be, diagnosis or not."

Here's our talk with her:

How old was your son when you first suspected he might have autism? What were those initial signs?

For me, this is a tricky question. Jon was a 1.5 pound premature infant. I didn't get to see him for several days after he was born due to a hospital mishap. There are certain things we say that haunt us forever. The first time I saw this tiny child on a warmer with a hat and cover over his eyes, I cried. He held my finger and the nurse uncovered his eyes. I looked at my husband and said, "He's autistic." I don't know why I said it. I remember looking at him and his eyes were empty. He was so tiny and frail. 

He was an inconsolable child when he got home. He had to be held upright 24/7 because he had horrible reflux. He could cry for hours. As he got older, he was repetitive in his speech. He spoke in books and we had to figure out what he wanted by what book he was reciting. If something did not go as planned, say a TV show wasn't on when it was scheduled, he would be miserable for hours.

The icing on the cake was how I learned he could read, starting with the Poe book left of the floor while I went to the basement to do laundry.

Jon felt no pain and he had no fear, but if he saw blood on his finger from a bump or bruise, he would cry. He could see pain, but he couldn't feel it. 

In those first moments when you found out your son's diagnosis, how did you react? And how did that reaction change over time?

Jon was 3 when we got the diagnosis. It was the second week of October when we found out that year. The nursery school he was going to pulled me aside and asked if they could send him for testing. Jon was fixated on all things blue. He was reading 20 books a day instead of playing. He could recite the capitols and per capita income of different states, class and phylum of dinosaurs. Heck, he knew that the giant sea turtle was an endangered species and lived off the coast of the Galapagos Islands. If you asked Jon to play with another child, he couldn't do it. I told the doctor he could read. My husband laughed and said not to listen, that he was a three-year-old child and not to be silly. Not only could he read, he read the answer key upside down and backwards. 

Getting the diagnosis, I remember sitting on the stairs and crying. I cried because I knew life as I had planned it in my mind for him was gone. I cried because I was right all those years ago. I cried because I work with kids that need help and now mine did too. I worried that work had now hit home. I worried about how people would react. I worried because my husband was in graduate school and working two jobs that I was going to be all alone in doctor appointments and interventions all over again (we had just finished all the preemie visits from agencies). I cried because I just started to work again and I worried I would have to give up my job.

But true mental health professionals that we are/were, we went to see Tony Attwood two weeks later in Vermont. We needed training. We needed to know what to expect and what to do. I take out those notes from all those years ago all the time. They are a Godsend. I learned games for eye contact, social skill games, games for motor skills and most of all I learned there was hope for my child. Tony Attwood, if you get a chance to see him talk, is one of the most dynamic speakers on the topic of Autism and Asperger's Syndrome, and he lets parents walk out knowing there is hope.

What is Jon's exact diagnosis? And what does that mean in laymen terms?

Jonathan's diagnosis is officially Asperger's Syndrome. What does it mean? Asperger's has lots of clinical criterion, but I can tell you what it means for Jon. It means he is smart but has absolutely no patience. He is hard on himself. Much harder than anyone else could be. He has a hard time keeping friends. He takes things SO literally. He is oblivious to others at times and their desire to joke with him.

While Jon LOVES to read, he hates to write. He LOVES math and can spit out a correct answer, but he can't show his work because it is all an internal process. He is fantastic in science when he isn't rushing through his assignments. He can talk to you about Pokémon for HOURS, but if you ask how his day is or what he had for school lunch, he will get agitated. He has a hard time making friends. He has a hot temper and a short fuse. He can be gloom and doom personified: the world is going to end; he wants to die because he didn't get things done in a perfect manner; he worries about minutia.

But on the other hand, he has a fantastic sense of humor and LOVES Monty Python. He has learned a sense of humor will make him friends quickly (it is the keeping them he has a problem with). He lights up a room when he comes in on a good day because he has a smile that is amazing. Teachers adore him because he is always willing to help someone else. He loves to sing and has a solo in the spring concert at school. 

What are 3 things you wish someone would have told you about autism that you had to learn on your own?

  • My child was the same child I gave birth to 10 minutes before I got that diagnosis. I thought the world had ended that day, but the reality is he was still the little boy I knew and loved.
  • Relationship Development Intervention by Dr. Stephen Gutstein is a TERRIFIC book. It is jam packed with social skill games that have given my son the foundations of playing with other kids. 
  • Jon has made me a better person because I've learned to laugh at more than I ever expected. His honesty is on the verge of being painful. Some of the best stories I have in my life are things that he has done or said. You can't beat a 4-year-old child banging a stuffed parrot on a desk reciting the Dead Parrot Sketch from Monty Python or my multicolored hair because he told me I was looking a little old. I never knew how much I could love one little child and all his quirks until he started to get older. A diagnosis of Asperger's isn't the end ... It is the beginning.

What or who has been your greatest resource for information and support during this time?

LOL, the message board! Let me say that I started as a volunteer for Clubmom (the predecessor to CafeMom). I was the first preemie message board volunteer. When Jon was diagnosed at age 3, I contacted the site and inherited the Autism message board. When Clubmom became CafeMom, I took the board here. The ladies on that board have saved my sanity most days. The admins that help me are all wonderful ladies that are more than just people on a website. They are my best friends. They are the girlfriends I always wished I had. They are my lifeline when I feel my worst. They let me know that what my son does is NOT unique. They have helped me normalize his behaviors to the point of accepting him for who he is. We have laughed together, cried together and held one another through lots of bad times, and I love EVERY one of them more than words can say. They will never know how much of a lifeline for ME they have become. I don't know what I would do without them.

What's been the most challenging part of dealing with a child with autism?

The most challenging part of dealing with a child with autism -- what a loaded question that is. Jon pushes me beyond my limits. If I was JUST some mom, I'd probably be working full-time and would be missing out on really being with him. I leave work to pick him up every day. I am always on high alert with him. I am always coming up with new ways to explain things to him or show him better ways of doing things. He has made me a better mom, better clinician, better person. But it is also this high alert mode of having to worry about meltdowns if I don't do this right for him or with him that is the most challenging. 

Tell us something that makes your son special or unique.

Really want to know what makes him unique? His cat. Bill the Cat is a thorn in my side. He is a dirty little boy cat that we were conned by the vet to take after our last cat died. Jon sobbed saying that Bill was just like him. When I asked how, Jon said, "Bill has no friends that want to play with him." This was five years ago.

This cat has destroyed my furniture. He knocked a computer off the desk. He has wrecked SO many things and cost us SO much money, but Bill is Jon's best friend. When Jon comes home from school Bill is waiting inside the door for Jon to come into the house. When Jon does his homework, Bill sits on his lap. When Jon eats dinner, Bill sits on the chair with him. When Jon has an absolute meltdown, Bill sits on Jon's lap and rubs him until he gets calm. This little boy who had night terrors and had to sleep in my bed, suddenly started sleeping in his room with a cat curled up on top of him. When Jon plays basketball in his room, Bill chases after the ball. When Jon has a bad day, Bill sits and listens. This cat that no one wanted, that had been through four homes before ours for bad behavior, has settled in and found someone to love him. Jon needed Bill just as much as Bill needed Jon. 

Finally... The debate around the cause(s) of autism is very heated right now. What do you think causes autism?

What do I think? I'm not on the vaccine bandwagon. I think that they are important and necessary. What does cause it? Who knows? Personally, I wonder if it is genetic with an environmental trigger. Could it be vaccines? The current research has said a resounding NO, but really who knows? Listen, I ate tuna when I was pregnant. No one told me that it might not be a good idea back then. I used my cell phone. I stood in the rain. I petted a dolphin. If there is a conspiracy about what causes Autism, I've probably done it.

I got terbutaline when I was going into early labor. My son got his vaccines when he was in the hospital. He got blood transfusions. Ironically, the only thing that didn't happen to him was a brain bleed. I had a 1.5 pound preemie. If all I walked away from the Newborn Intensive Care Unit with is a child who has the diagnosis of Asperger's Syndrome -- I am truly a lucky and blessed person. I don't care what got my child to this point to be honest. I can't go back and fix or undo it. All I can do is move forward for and with him to make his life better.

For us, that means that we teach him how to interact with others. We help him with anger management. We help him have better communication skills and to translate those skills from his head to paper for school work. I can't undo the past. I have plenty to feel guilty about and trust me, others even on this site have tried their best to bring up those feelings. I love my child for who he is and who he will become because he is MINE. I gave birth to him. He didn't ask to be here. It is my job to help him be the best person he can be, diagnosis or not. He's my sugarbooger, and I love him.

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