Autism: Our Journey

My eldest son, Ray, is diagnosed with Aspergers, or High Functioning ASD (Autism Spectrum Disorder). Naturally, his special circumstances are going to be present throughout the stories I tell in this blog. At the same time, from what Michelle and I have read and witnessed, ASD comes in so many shades and shapes, that at times it’s hard to believe that all these cases are treated as a single category.

For both these reasons, we thought it would be right to give you all, our faithful readers, a short overview of our journey to-date surrounding Ray’s ASD, so you know what to expect. If you have a child with ASD, this should help you sense if our experiences are similar to yours.

This is just an overview, of course – detailed stories about what we experienced and how we dealt with it will probably appear in the blog from time to time. We hope those will help you in your own journey with your children.

0-2: Blissfuly Ignorant

As our first-born, Ray was bound to be the one on which we made lots of mistakes. Trial-and-error, my friends – that’s the key to success in any endeavor, and parenting is no different. In our case, since he was eventually diagnosed as Aspergers, the fact that we were relatively clueless was a blessing at first, at least as far as our levels of stress. We didn’t know much about what to expect, so we treated him like a regular child, assuming that his quirks would pass as he grew up.

What were those “quirks”? There were a few.

Textures. He was very sensitive to certain textures – he cried if placed on grass or sand in the park, and would not finger-paint. He was very picky about certain foods, as well.

No oral phase. Babies usually put lots of things in their mouths, but Ray almost never did. It was so unique, we used to tell people that we could let him sit in a pile of marbles and not worry that he would swallow one and choke (don’t worry, we never actually left him in such a pile).

Low muscle tone. Ray picked up his head late, and after going to the doctors for slow physical development we were told he has low muscle tone and will need to exercise more to reach certain goals.

Is he deaf? When he was a few months old, we went for a mandatory nurses checkup (what is called Tipat Halav in Israel, which directly translates into “Milk Drop”). As part of the battery of tests they run to check his health, they rang a bell next to each of his ears to see if his hearing is OK. Ray did not react, focused as he was on something else in the room. The nurses concluded that “your son is probably deaf” – a ridiculous claim, we knew, since he would react to our voice at home.

Indeed, his hearing was fine, and is actually quite acute till this day. However, as we later discovered, this lack of reaction is related to hyper-focus that people with ASD sometimes exhibit.

Highly Intelligent. From an early age this was apparent. He learned to speak very early, and was very verbal.

2-6: Shock, and Recovery

It was only when we moved to the US for my doctoral program that we got him diagnosed.

We found out in his first year in US preschool. The school counselor called us in and my wife went to talk to her. Without much introduction, the counselor raised her concerns about Ray – the social, motor skills and sensitivities – and told her straight out that she thinks he has Autism. Michelle listened, somehow held it all in till it was done, and called me at the university.

At first we treated it as a suspicion, a hypothesis to be proven, so we took him to a bunch of specialists – a Neurologist and a developmental Psychologist, Dr. M. – to get the diagnosis. The confirmed what the counselor had said: Ray was borderline ASD, coupled with SID – Sensory Integration Disorder.

To us, it was both a shock and a relief. We realized that the future might not be what we had always assumed it would. At the same time, there was finally a word we could use to describe all those “quirks” that he had, and which he was not growing out of. This gave us access to reading material on how to handle things, as well as State-funded therapies we could take him to. It also meant we could share some of our difficulties and dilemmas with family and friends, now that there was a clear diagnosis.

For the next four years, we worked on his motor skills, social skills, and sensory issues. Most importantly, we spent lots of time paying attention and learning our kid, seeing what works for him. In this sense, having him as our first was a real blessing – we really learned how important it is to treat each kid as an individual that has their own needs, not just “another kid” who can be raised like their older siblings by default.

6-9: Back in Israel, on to School

When I finished my PhD and we were ready to come back to Israel, Dr. M. said that she can give us a diagnosis for Ray as having ASD, but that she thought he was still borderline – we could try and integrate him into a regular school. So, we decided to send him to school without telling the school, in advance, that he had this label. We wanted to see how he would fit in.

He did well at school, but there were some clear challenges. First, he was highly intelligent, and learned to read at age 4. This meant he was bored in many classes. At the same time, he had to learn Hebrew, which was not his mother-tongue. Due to his ASD he tended to take lots of things that were said very literally, creating many small social confusions and barriers. While he was not picked on in class, he didn’t really have any true friends.

In order to help him with his motor skills, we found a Judo Dojo that had a group for special-needs kids. We sent him there, and they were amazing. He is now a green-belt and still going there, almost ten years after our return to Israel.

9-12: Self-awareness

It was at age 9, in 3rd grade, that Ray came home one day and told us that he feels different from the other kids. He could not pinpoint how, or in what way exactly, but it was clear to him that there was… something there.

And so, after lots of preparation, we told him about his diagnosis. It overall went quite well. As a next step we also helped him “come out” before his fellow classmates, who were very supportive, to our great surprise and joy. This chapter in our lives was filled with worry and relief, and there is a lot to unpack here – you can be sure I’ll write several posts on this in the future.

With the “secret” now out in the open, we began sending Ray to a therapist to help him cope with this new label. In parallel, we got him officially diagnosed so he would be eligible to state-support. This diagnosis also gave him access to getting a “shadow” in school – a young woman or man that would help him integrate in the classroom and during breaks in the yard. While in 4th grade his shadow was just reasonable, in 5th-6th grade he had an amazing shadow who really helped integrate him during break time.

He still had no real friends, though.

12-Today: Great Strides Forward

When Ray was done with 6th grade and was preparing for Junior-High, we had trouble finding him a shadow. It was a new school, as well, and we were concerned he’d need the shadow more than ever.

Ray disagreed. “I think I’ll be OK,” he said, “I don’t want a Shadow this year.” Between him saying that he does not want one and us having difficulty finding one, we gave it a go, with a heavy heart.

That was one of the best decisions we ever made. Within a few months, Ray had made a few friends – real, devoted, good friends, for the first time in his life! It was quite amazing and fantastic for us and for him. Combined with his natural intelligence and studiousness, he was – and still is – flourishing academically and socially.

While for the most part he is like a regular kid, the ASD is still present. He has difficulty with sudden changes in schedule, and tends to see things in very stark black/white terms, which can lead to meltdowns. (I have a whole meltdown post that I plan on sharing with you all in the near future, so stay tuned). The SID is also still there, though much reduced, thanks to those early years of audio-therapy.

But truly, Michelle and I feel blessed. Our kid is healthy, and capable, and mainly we see him growing from a baby to a boy to a young man, getting stronger all the time. When I think about how much uncertainty we started out with, and how far he has come, I really am so happy to have him as my child.

And… what’s next? I have no idea! That’s the adventure of Life for you, eh? If you stick around our blog long enough, I figure you’ll hear more about it soon after we do 🙂