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12 Mar 2024, 12:22 pm

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!



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12 Mar 2024, 1:01 pm

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


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carlos55
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12 Mar 2024, 3:27 pm

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


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cyberdad
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12 Mar 2024, 3:40 pm

I must be on the... wrote:
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.


My daughter is somewhere between the other kid you described and your son. Autism manifests as a continuum not discrete categories. Your response is identical in that I also suspected I was on the spectrum myself.

Getting care related to her diagnosis was/is a nightmare. I would go back to your son's psychologist and get your son assessed properly and given a functional assessment that can be used by support staff to determine what level of assistance he needs (if at all?).



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12 Mar 2024, 9:47 pm

Double Retired wrote:
"When you meet one person with Autism, you’ve met one person with Autism"


The source of much of my confusion is that my son doesn't seem to match the description of this article or of any other ones I read or any lists of symptoms I look at. There's no obvious stimming behavior, no obvious lack of eye contact, no obvious difficulty with abstract thinking, no obvious inability to communicate, etc. Maybe I need to read through the official evaluation he had.



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12 Mar 2024, 9:51 pm

cyberdad wrote:
Getting care related to her diagnosis was/is a nightmare. I would go back to your son's psychologist and get your son assessed properly and given a functional assessment that can be used by support staff to determine what level of assistance he needs (if at all?).


He's currently refusing any further assessments and treatment. It was so bad and the people were so unhelpful, that he's done. It probably would have been better had he never received the diagnosis. I've thought about moving to a different state and taking him with in hopes the psych people there are better.



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12 Mar 2024, 10:00 pm

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.



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13 Mar 2024, 11:25 am

I must be on the... wrote:
cyberdad wrote:
Getting care related to her diagnosis was/is a nightmare. I would go back to your son's psychologist and get your son assessed properly and given a functional assessment that can be used by support staff to determine what level of assistance he needs (if at all?).


He's currently refusing any further assessments and treatment. It was so bad and the people were so unhelpful, that he's done. It probably would have been better had he never received the diagnosis. I've thought about moving to a different state and taking him with in hopes the psych people there are better.

Does he have difficulties that might be due to Autism, or is he getting treatment because he's been diagnosed as Autistic even though he is not significantly impaired by it. (Note: I do not consider being different to be an impairment requiring medical attention.)

If you search the Internet for famous Autistics you'll get an impressive list of folk, most of whom I suspect did not get any treatment.

I'm not famous but I've had a reasonably successful life and was not diagnosed until I was 64...years after I retired comfortably. With hindsight I can pick out a few things my parents did that helped me, but it wasn't because I was "Autistic", it was because I was a little different and therefore how they dealt with me had to be a little different.

Yes. Socializing was never my strong point. I didn't need a doctor, though. Maybe some helpful advice would've improved things, however. (I'm now happily married, nonetheless.)


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13 Mar 2024, 2:40 pm

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)


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13 Mar 2024, 3:03 pm

I must be on the... wrote:
Double Retired wrote:
"When you meet one person with Autism, you’ve met one person with Autism"


The source of much of my confusion is that my son doesn't seem to match the description of this article or of any other ones I read or any lists of symptoms I look at. There's no obvious stimming behavior, no obvious lack of eye contact, no obvious difficulty with abstract thinking, no obvious inability to communicate, etc. Maybe I need to read through the official evaluation he had.

Do you want to share what his symptoms are and why he got diagnosed? Was it due to learning difficulties, social anxiety, other kinds of anxiety?

I also don't have social difficulties, I don't think many people notice that I don't make as much eye contact as most people or that I look at noses, forheads etc. My IQ was also off the chart and I have excelled at academics throughout my life and I have a deep passion for science. However, the difficulties I have arise when there is a lack of routine and I have had adaptation disorder. I also struggle with sensory issues and related anxiety. I stim but I don't know how obvious it is to a casual observer and that has always come across as ADHD, I'm the one to click pens, tap feet, change poistions, do things with hands, make accidental noise with soda cans, notebooks etc. Now, why I was diagnosed were severe adaptation difficulties, problems with everyday functioning when there is a lack of routine and sensory issues and anxiety related to them.



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13 Mar 2024, 3:22 pm

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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13 Mar 2024, 4:46 pm

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.



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13 Mar 2024, 5:43 pm

I must be on the... wrote:
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.

Hmmm...
The source of stress can be many things.

Does he mask at least most at time (in attempt to fit in or for any reason)?
Can you ask him about this? i.e. 'do you pretend to be normal?' It can be done consciously or unconsciously.

Masking can hide autistic traits and behaviors by suppressing repetitive behaviors, forcing eye contact, pretending to favor typical interests if they don't like it, etc.
Which is detrimental to an autistic's mental health and cause burnouts.


Does he have sensory issues that are not accommodated/ignored/denied/not well communicated?
Because this can cause a lot of stress.


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16 Mar 2024, 11:24 am

I must be on the... wrote:
Double Retired wrote:
"When you meet one person with Autism, you’ve met one person with Autism"


The source of much of my confusion is that my son doesn't seem to match the description of this article or of any other ones I read or any lists of symptoms I look at. There's no obvious stimming behavior, no obvious lack of eye contact, no obvious difficulty with abstract thinking, no obvious inability to communicate, etc. Maybe I need to read through the official evaluation he had.


The myth is that autism always presents in a visibly obvious way to observers such as yourself. But autism can be a very INTERNAL experience as well. Plus, how do you know your son doesn't excessively stim while in private? You should see ME in private at home by myself. I'm Stim City. But when I'm around people, stimming is suppressed, save for some continuous toe curling, non-detectable teeth clicking, tongue chewing, and sometimes the socially acceptable foot flapping or knee bouncing.

Not all autistics avoid or have little eye contact.

How do you know your son doesn't relentlessy rehearse every anticipated conversation? I've always done this, and to this day, not a single family member knows it.

I have sensory issues that family members do not know about.

Your son could be "very autistic" without showing it.



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16 Mar 2024, 5:32 pm

Elgee wrote:
How do you know your son doesn't relentlessy rehearse every anticipated conversation? I've always done this, and to this day, not a single family member knows it.


Yeah my daughter does this. The way you can tell is when the child clarifies nearly everything you tell them.



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16 Mar 2024, 5:37 pm

Edna3362 wrote:
[
Masking can hide autistic traits and behaviors by suppressing repetitive behaviors, forcing eye contact, pretending to favor typical interests if they don't like it, etc.
Which is detrimental to an autistic's mental health and cause burnouts..


Yeah many of these behaviours are to cope with underlying anxiety. Suppressing the behaviour doesnt just cause burnout. The child can lash out of frustration or in my daughter's case have oppositional behaviour which boils down to "leave me alone or I'm going to have meltdown". The more I observe this, the more I realise Freud's model of the unconcious actually makes sense.