Acclimated to Autism

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So DS (8) is very likely on the spectrum. He does not have a formal diagnosis, but his school has been observing him and has recently decided to formally evaluate him. This is no surprise to me - I have suspected he might have Asperger's since he was a baby, but up until this school year he was able to "pass" as NT (a strange NT who got bullied a lot).

So anyway, today I've been looking at YouTube videos of children with autism. In the past I have looked only at Asperger's videos, but today I looked at some videos of children with moderate and severe autism. I was pretty shocked at how much their behavior resembled my son. Now I am wondering if DS is actually farther down the spectrum than I previously thought. He is my oldest child, and I have almost no other experience with children. As a result, his behavior has pretty much been my standard for how a child acts. Also, I have become acclimated to a lot of the behavior that seems shocking or annoying to other people.

How common is it that people find out their child is more autistic than they thought? Is it common for parents to have a certain blindness to their child's unusual behaviors? Have any of you failed to notice differences that were obvious to others? Is it possible for a child who is more than aspie to make it this far in school (3rd grade) before his differences are noticeable to people outside his family? Part of me feels like that's not possible, but then I look at the videos and - wow.

I'm in a slightly similar boat. My child was severely speech delayed, and at the time we started speech therapy in preschool, I asked if we should evaluate him for autism, and was told no by multiple sources that this was not autism, just speech delay. So when I went to psychologist when my son was 12 about significant anger management issues, that was the first time someone mentioned to me he might be on the spectrum. This kind of threw me for a loop, because I'd been told otherwise by people who I thought should be in the know. And like you, because he was my oldest, I had no frame of reference until I began to notice that my youngest child does not behave the same way, hence our recent appointment with the psychologist. Even then, I was thinking some other disorder, not autism spectrum. But now that I've done research, it sure explains a whole heck of a lot.

Well, it happens to spouses too. When my DH had his formal evaluation, had he had a speech delay, he would have been diagnosed with HF autism, instead of Aspergers.

We had no clue how hard he tried to pass as an NT.

I saw the similarities right away coming here. My son has more in common in many, many ways with a non-verbal autistic than he does most NTs. But my son is still high functioning for the simple fact that he sees enough to make the connections and adjust his thinking and behaviors enough to get by in the world as it is. He can fake NT pretty well. But inside, his thoughts and his needs - they will NEVER be NT. He adapts, but he is still who he is.

Getting to where he is was definitely a journey. When he was younger I believed he was high functioning, but I don't think you can really know that until you've had a chance to cross a whole bunch of large hurdles with your child. When you are stuck in a debate with your child about, for a small example, saying "thank you" even if he doesn't mean it, you start to wonder if he will ever get it. All those bridges have to get crossed before you really feel confident that he will be able to make it on his own and that, after all, is the ultimate guideline for level of functioning: can they make it in the world?

I wasn't diagnosed until my late 40s and only then really began to learn about autism. The better I've come to understand the condition, the more overtly autistic I've begun to see my own behaviors. It's been a startling revelation to come to grips with just how 'different' I have appeared to the people around me all my life.

The most telling sign of this has been how readily my own parents embraced the diagnosis, once they realized what it meant - just as I had recognized myself in the diagnostic criteria as soon as I read them, they also saw immediately a complete and perfect explanation for all of the oddities and quirks and frustrating behaviors they'd dealt with when I was a child and teen. Once you had the autistic template to compare them to, they were all perfectly normal - for an autistic kid.

As someone with no formal, official diagnosis, my child always made sense to me, so it was easy for me to thin he was NT. It never occurred to me that I wasn't, and my son is a lot like me.

My son had/has meltdowns and too much social disinterest to "pass." I could easily see if he were milder in those two spheres how he could have been under the radar.

Due to me and my father, my mother is verry merry berry acclimated to autism. Autism is normal to her, and while she doesn't understand some of what could possibly be going on in my mind or my father's mind, it doesn't seem to bother her. Sometimes, I am able to elucidate some mysterious behavior of my father's, and she is able to understand and incorporate into her mentalizing about him to predict his behavior in future. I am not sure if he can elucidate any of my mysterious behaviors, but usually, I can elucidate those myself, so he doesn't need to.

When DS was diagnosed, the psychologist said that to a parent, it might seem perfectly normal that a kid would insist on riding the elevator 10 times in a row or be more interested in the skyrail than the animals at the zoo. Yep, seems perfectly normal to me! I still think it was a stretch to classify these as "repetitive behavior or unusual, restricted interests."

I'm sorry but I'm not grasping the unstated conclusion. Does that mean that the doctor is saying that parents don't usually see those behaviors as unusual, but that they are unusual? Or that those behaviors are really not unusual for a toddler?

I think it was meant literally. Those two behaviors (loving the elevator and skyrail) really can fall in the range of typical behavior for kids. Not loving animals, well there are typical kids who don't care for them (though they're uncommon).

Regarding the OP's point about your child resembling a child with more severe deficits. I think, without knowing your child, it's a tough call to make. I'll just offer that those videos of kids with severe deficits are able to capture some of those core deficits at the heart of what makes autism, autism. They showcase prototypical autism, and so they may have something that every child on the spectrum can relate to or resemble. On the other hand, children with high functioning autism/aspergers have some of those core deficits (maybe not all of them), and they're able to compensate and mask them. So looking at two high functioning kids side by side, you may see as many differences as you see similarities. They may both seem odd, but in different ways, and it may be hard to look at them and pinpoint just based on observation why they are lumped into the same category. When you look at a high functioning and low-functioning kid side by side, the similarities that you see will be exactly what makes the high functioning kid different from other kids: it spells out exactly what autism is.

But as you're despairing there, it's also important to notice how the high functioning kid may be compensating for those deficits, or how s/he may be more skilled than the lower-functioning one. The ability to effectively learn coping strategies is ultimately what predicts outcomes for children with ASDs. Kids can start completely non-verbal, and still learn to compensate effectively, and wind up being indistinguishable from people with mild Aspergers as adults.

My understanding was that the doctor was explicitly telling me that the *intensity* of DS's liking for the elevator and the skyrail was unusual, and that it might not seem unusual to a pair of parents who were engineers. In particular, there was a half hour break during the testing, and to kill time DS and I went and rode the elevator. DS had also had a few sessions of OT in the same building, and I often had to bribe him with riding the elevator to get him to cooperate.