high functioning vs classic autism

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Hi. My first post here. I realize that "high functioning" is not in use any more. I just don't know what language to use to ask my question.

My son was diagnosed with autism four years ago. He's now 19. His IQ is literally off the chart in some categories. His language skills are top notch. He makes eye contact. He understands sarcasm and dishes it out. He has and makes friends. He's what people would have labeled "high functioning" a few years ago, or maybe not even autistic at all.

When I was a kid, the only autistic person I knew was a guy my age who was a friend of the family. He speaks but not in complete sentences and not about anything anyone can relate to and cannot carry on a conversation. He has marked repetitive behaviors like insisting on putting a quarter in any machine he sees that takes one and insisting the mile indicator on the car gets reset every time it reaches a certain number. He cannot take care of himself and cannot be left alone.

My son has had an absolutely horrible time with care related to his diagnosis that I won't get into now. I question how useful the diagnosis is and whether it's correct at all. I'm trying to understand how to help him. Also, it has been suggested to me that I'm autistic, and in reading about autism, I do have some symptoms, but not enough of them that it's obvious.

So, what I can't wrap my head around, and my first question is... how is it that my son and the guy I knew as a kid have the same label of "autism" assigned to their symptoms? Their sets of symptoms look so different to me that it doesn't make sense, and makes me question whether my son has been correctly diagnosed. Thanks!

"When you meet one person with Autism, you’ve met one person with Autism"

Classic autism is the old 20th century autism before Asperger's was added to it.

It usually came with Intellectual disability.

The term classic autism is not really used anymore rather its just called the spectrum or ASD.

They are still there though within the spectrum, the most disabled of which are referred to as having Profound Autism

I have a very mild form of autism, so much so that two assessments I've had came back inconclusive, neither a yes nor a no. One assessor came up with Social Communication Disorder, which includes some elements of autism but not others, though I don't think it's accurate for me.

When I first suspected I might be on the spectrum, in 1997, I had read a book called Shadow Syndromes, which has a chapter on autism. The book is about conditions that can manifest in attenuated forms that don't fully meet the criteria for the condition but can still cause problems in life. Perhaps you would find that helpful and maybe recognize some of yourself or your son in it.

You don't mention what difficulties your son has that he could use assistance with. It may be that there isn't any specific assistance available for subtle difficulties. I have a therapist and psychiatrist who don't specialize in autism but who recognize some of my personal quirks as likely to be on the spectrum, and that insight is helpful to me.

today autism is diagnosed according to what supports are needed, level 1 needs some support, level 2 needs a great deal of support, and level 3 needs a whole lot of support. These are completely dependent on what professional does the diagnosis and are somewhat subjective.

The idea of using support levels was supposed to take away the stigma of "high performing" and Low performing definitions, and in truth most autistic individuals are very different in the ways we show our autism.

Most of us have very uneven "performance" scores in testing, being quite strong in some areas and struggling along or failing in other categories.

Autism is now known to stem from unevenly developed neurological systems, so depending on the development of our neurology, each of us will show different traits.

In order to get an autism diagnosis, people must show struggles with social interaction, struggles with communication, and rigidity in thinking, behavior in some ways.
Diagnosis has gone from looking for differing behaviors to finding that we have different neurological wiring which may be the root cause of these behaviors.

Diagnosing doctors now also may look for sensory processing struggles, such as sensitivity, over reactivity/showing signs of unusual or difficult struggles when engaging our senses in various ways. (see proprioception/ interoception/ gait problems, troubles with balance and coordination, audio, visual, or other sensory differences and struggles)

It's because autism is not something measured by arbitrary levels of severity/support.
That's for insurance purposes.

There's a concept call the autism wheel; it involves a continuum of common traits, of strengths and weaknesses.

Some are verbose or non speaking, some shutdown instead of meltdown, some are constantly anxious instead of having a screwed sense of danger, some are athletic instead of clumsy, some are very organized and repetitive if not disorganized and spontaneous, if they're depressed or not for whatever reason...

Then there's the individual's varying cognitive profiles, varying sensory profiles, their sociality, if they're alexithymic...

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Several of you have asked about what level of support he needed or what specifically he needed support with. I'll try to answer. I probably won't use the correct terminology.

It started with him not being able to finish school assignments in a reasonable amount of time and with not fitting in socially and being stressed about those things.

After his first evaluation 4 years ago at age 15, it was determined he needed socially geared speech therapy. He did not receive that in spite of our trying to get it.

During the course of trying to get that recommended therapy, he was evaluated again, and this time needed several other things. I would have to go back and read it to tell you what. Again, he did not receive any of that. He did get some other things that were not on the professionally recommended list and all that did was frustrate him to the point that he no longer wants any part of this stuff.

I don't know what he needs now. He has shut down to a degree I've never seen in anyone. He can't/won't work or go to school. Any effort to help him just seems to make things worse. I really believe he would have been better off never receiving the diagnosis and never becoming involved with these people who were supposed to be trying to help him.

My current idea is that it's not autism that's his main problem, but rather trauma due to this experience and some other things he's gone through.