High Functioning Autism Spectrum Disorder

Several weeks ago we finished a year long process of therapy and testing and interviews and all the hoop jumping which landed us with this diagnosis: High Functioning Autism Spectrum Disorder. I was honestly very surprised with the diagnosis- my limited knowledge of Autism made me think of children who didn't speak or play with other kids. I had pretty well convinced myself that Winston was ADHD so I dismissed it when the pre-screening therapist mentioned it was a possibility. In the month that has followed my research looking through this lens has helped me make sense of so many behaviors that I have questioned over the years that I am ready to claim it. Its been an interesting process. The book I'm reading right now- Uniquely Human: A different way of seeing Autism by Barry M. Prizant is such a beautiful explanation. It's a positive look at the spectrum- its not a disease to be cured. He explored the neurology and the why behind the behaviors. There are two stories that stood out to me just screaming off the pages as I read them- The first about a woman named Ros Blackburn it says: "...people stare when she jumps up and down and flaps her arms. They're simply not accustomed to seeing an adult act with such abandon. She points out that it's common to see people on TV doing just what she does, after they've won the lottery or a game show. 'The difference', she says, 'is that I get excited more easily than you do.' " This is exactly what I've meant when I've said that Winston makes the rest of the world seem two dimensional (p. 6) The next story was about a little boy who had a habit of fluttering his fingers in front of this eyes just mesmerized by them. His therapist had been trying to train him to restrain himself from this exercise reprimanding him when he did it. When his grandfather died around the same time he was very anxious and his parents tried to reassure him, telling him about heaven. He simply asked "In heaven, are people allowed to look at their hands?" (p.9) That one broke my heart! It made me think how worried I've been the past several months when I peek into Winston's room watching him spend literally hours rearranging the Lego baseball players on his Giant's field for the billionth time. Why wasn't he building Legos like normal kids? This story gave me the freedom to allow him to enjoy it. He finds joy in the order and it makes him feel regulated, why would I take that away just so that his play "matched" some arbitrary expectation of how other 5 year olds deal with Legos? Here are some of the typical behaviors of autism as we experience them:

1. Enthusiasms
A hallmark of Autism is repetetive and restrictive behaviors and interests, or "enthusiasms" as he refers to them in the book- in our case it's most often basketball. When Winston was 1 year old he started shooting hoops and has never stopped. We couldn't go visit any family member unless they had a hoop, we put one in Evan's office at work, I had to draw one on paper and hang it on my head rest in the car one time just to get him to get inside, and we took one with us when we went to friends houses for dinner. My brother (a wonderful pediatrician if I do say so myself) told me about an experience he had with Winston that encapsulates this idea: They were in the car and had pulled into the driveway to find the yard full of deer. My dad pointed to the animals and excitedly told Winston to look. Winston looked out the window, didn't acknowlegde the deer, didn't even seem to see them, but got terribly excited about a basketball hoop he spotted three houses down. When you talk to Winston he'll probably just talk to you about basketball but it's not because he doesn't care what you like- its just that its what he knows and what he feels comfortable with. He likes rigid structure and routine, he needs to know what to expect at all times- a normal conversation can be terrifying when it goes into topics he's unfamiliar with so he won't follow it there. He'll bring it back to his routine.

2. Echolalia
When Winston hears a word or phrase or sound that he's unfamiliar or uncomfortable with he will repeat/mimic it- in our case this looks like the following experiences: playing at the park and hearing another child speak a different language to his mother, Winston will get right in his face and "speak Chinese" (gibberish and mimic noises) back to the child. Other times if he hears a mother yelling at her child he'll laugh at the high pitched stressed out sound and mimic it loudly. When he first met baby Viv she was crying as newborns do and now he mimics this sound to her on a daily basis even though she has long since moved past that stage. This is has been embarrassing or annoying for me but I realize now it is his way of processing and communicating with foreign noises.

3. Social (mis)Understanding
The rules of social interactions are incredibly complex and don't make sense to someone with autism. Reading the chapter in my book on this reminded me of an experience with Winston- last October we were trick or treating and a very elderly woman opened one door. He immediately said "Your face is so ugly! Are you wearing a mask?" I was mortified and so mad at him. How could he be so rude! Where did he learn to talk to people like that! But now I realize- we teach him to be honest- but then there are all these exceptions to that rule where you really shouldn't be honest. Plus it was Halloween, people do dress up in ugly masks on purpose, how was he supposed to know that it was her actual face and in such a case you shouldn't point out that it was ugly. Winston struggles with reading other peoples body language and emotions- he doens't understand when other kids don't want to play or don't like the way he is playing (wrestling, etc.) This makes friendships pretty tricky.

4. Routine=Trust
Another quote from the book I really liked was by a man named Michael John Carley who has Asperger's, he said: "The opposite of anxiety isn't calm, it's trust." Routines, rules, these give Winston a way to trust the world around him. When something doesn't work the way it is supposed to- for example: we have to change our plans and can't drive through the car wash because we have the bike rack on the back of the car and they don't allow accessories - this can (and did) result in a full on screaming meltdown and accusations that I am a bad mom. It's not really about the car wash or me- its that his universe has been tilted off its axis and that feels very uncomfortable and upsetting. Leo Kanner defined autism as "insistence on preservation of sameness" which really hits the nail on the head (p.22) We all want to feel like we can depend on things and for someone who has more intense emotions and less ability to self regulate than a neuro-typical person it is that much more important.

Of course all these things are just little snapshots of Winston as a person. He has a photographic memory and started memorizing words and logos at the age of three- able to read a vast majority of words by the age of 4. He doesn't listen to or watch movies and music, they are a full body experience. He has a lot of anger when things don't follow his routine or expectations which is painful for me like when he tells me he's going to cut my face off because I won't let him color with a Sharpie. He incessantly teases his little sisters (far beyond a "big brother" behavior) when he can't get them to cooperate with his ideas. He's sensitive to textures- often chewing on spongy things or rubbing people's "fuzzy hair" and particular about his food preferences. He gets so genuinely excited for other people when they do well, my friend told me a funny story about how when he got in her mini van one day he said "Emmy, you cleaned it, I am so proud of you!" and then looked in the back and saw much of the mess had been moved to the trunk so followed up with "Oh, you just moved it back here. It was a good try." We have a hard time with eye contact and body awareness, th elist just goes on and on.

I think when he first got the diagnosis I didn't want to tell anyone because I didn't want it to change the way people thought of him or us as a family- as a diagnosis before a person. But it is so interwoven into our lives at this point that I really would like the opportunity to connect with other parents, hear their stories, share their pains, support each other, learn from their wisdom as we are so new on this journey. We love Winston dearly and are proud of the person he is becoming, he has the sweetest heart and although he will have unique struggles ahead which we are interested in getting help with, it's a privilege to be on this journey with him as a mother because it has made me a better person.