A few questions about ASD & whether I have it

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I have a few questions about autism spectrum disorder. These questions are because I suspect that I may have ASD.

First, is autism spectrum disorder more likely to be diagnosed now than in the past? Over 20 years ago, in 2021, I went to the University of California, San Francisco, to be evaluated to see if I had Asperger's syndrome since a psychiatrist where I live diagnosed me with Asperger's syndrome. I wanted to be sure. The resident, with my permission, made me a class project. As a result, I was questioned by about 30 people. At the end of the questioning, I left. My resident came back shortly afterwards and said that I have nonverbal learning disorder and working diagnosis of ADHD. She said that they thought it was fairly clear that I didn't have Asperger's syndrome. They said that the residents and professors said that they could tell immediately by looking at me and by the way that I walked that I didn't have Asperger's syndrome. They said my symptoms were not severe enough to meet the criteria. Now that I hear that Elon Musk and Anthony Hopkins supposedly have autism spectrum disorder, I wonder if the doctors were using too tight of a definition for Asperger's syndrome (not autism spectrum disorder).

Second, have there been enough changes in how autism is diagnosed to make a 22-year old conclusion that a person does not have Asperger's syndrome suspect?

Third, what is the benefit of knowing that I have autism spectrum disorder if indeed I have it? I'm a male in my fifties. I work as an attorney. I've worked in the same job since becoming an attorney in my twenties. I plan on retiring in five years. I can think of one possible benefit: Knowing if I have it may result in me finding a psychiatrist who specializes in it. Hopefully, that psychiatrist would do a better job of finding medication that helps me interacts with others. Are there any other benefits of knowing that I have ASD?

Fourth, does anyone have any suggestions on how to find a place to be evaluated for autism? I live in the San Joaquin Valley. That's about the geographic center of California, although in these days of remote visits perhaps where I live doesn't matter. Maybe I should just go to UCSF again.

Thanks for your help.

This sounds strange. Could you elaborate on this?



I have heard this. Many celebrities get diagnosed with whatever is popular. Sometimes its made up and invalid claim.
Many celebrities keep these things to themselves as well. So it might be true or not.




Yes there is research going on. Things have changed.


Maybe yes, maybe no. Some problems are caused my many things, not just autism.
Autism is something person is born with. Knowing you have it is not always meaning it helps with life problems.
It might be helpful though if your interactions are lacking, with people. Especially things you are unaware.
However the way these problems are actually solved is hard to say. I don't know how autistic problems are solved.

There are two reasons for getting a diagnosis:
1- in order to get some form of benefits or accommodations from government or work.

2- to further ones own understanding of oneself.

For me, the first will not get me anything. The second is therefore all I'm interested in.
Very little is understood about ASD or Asperger's. Each mental health professional will interpret the diagnostic guidelines via their own understanding.
Diagnosis involves putting us into categories of this or that "disorder". We don't fit very easily into categories. This is why the categories keep being changed.
Diagnosis might be useful for what I could learn from the tests involved. But the value of being either this or that diagnosis is to me almost meaningless. I am the one who lives in this being. I'm the one who needs to understand who and what I am. I am happy to learn from doctors but I will take their diagnoses with a large pinch of salt thank you.

Science doesn't know everything. If you have worked as an attorney, you have probably experienced the idea that Judges and Jurys can come to identify "truth" differently than, for example, the defense attorney, the prosecuting attorney, the defendant might. There is a gap between what the Psychologist know and what the Neurologists know. Asperger's is in some ways in that gap. In the USA the official definition of Asperger's was in the DSM IV (Diagnostic and Statistical Manual of Mental Disorders version 4), and it was removed in the DSM 5. Most of what what was called "Asperger's" in the DSM IV is now covered by "Autism" in the DSM 5. Similarly the ICD (International Classification of Diseases) has followed the example of the DSM. The reason for the change is that study after study found that there was really only measurable differences in degree and not in kind. The DSM 5 introduced two quantitate measures. However in Psychology, as in law, there is some subjectivity.

As mentioned already, getting a diagnosis on paper may have certain practical or legal advantages related to the Individuals with Disabilities Education Act (IDEA), or Section 504 of the Rehabilitation Act of 1973. Certain private organization may also have rules and regulations which will be set into motion by a written diagnosis.

Or it may just help you to better understand yourself - and your relationships with others.

On the subject of how to find a place to be evaluated for autism: It isn't easy. It will take effort and persistence.
One suggestion is to look for a large teaching hospital near you and see if they do evaluations. In my personal experience these places have long (very long) waiting lists. For my son we had to wait a year. For myself I found that the waiting list was over 80 people in the Adult diagnosis program. I am (supposedly) on the waiting list and haven't heard back at all.
Another method is to look at your insurance company's list of providers and see if any of them list adult autism or teen autism diagnosis. Autism probably caused by both genetic and environment factors and always exists from birth. As an adult you will have to show a professional evidence not only that you "have it now" but that you "had it then". People don't suddenly develop Autism as adults. You can also try networking. Pediatricians may be a better source of references to professionals who do Autism diagnosis than other GPs, but not all of them (Autism professionals) will be familiar with diagnosing adults. You may have to call a number of professionals before you find one who both does Adult diagnosis and is taking new patients for such an evaluation.

I am working with a professional in Pennsylvania right now who does adult diagnosis. She wanted me to bring my mother and father to the meeting. I had to explain that I am 54 and my mother died of cancer at age 70, ten years ago, and my father is recovering from a stroke in RI. The evaluation paperwork had many questions about developmental details (like the first few months of life).

I eventually found the person using google and web sites that listed professionals. I also included "Pennsylvania" as part of my search because many professionals are not licensed to work with patients outside of the professional's home state.
For my older son we actually drove to a neiboring state.

There is no blood test for autism. No-one does brain scans for autism diagnosis (or the few who do are not always taken seriously by other professionals). A spinal tap cannot be used to diagnosis Autism (though they are developing a test to use it to diagnosis Parkinson's).

The credentials you are looking for is a License in Psychology or Psychiatry and (for my money) and PsyD, PhD or MD. The person I found is a MD who has a child on the spectrum. Her practice specializes in Autism diagnosis, and the fact is displayed prominently on her web site (which has autism in the website domain name). It took a lot of trial and error before I stumbled on her.

The evaluation, especially if you are borderline for being sub-threshold, will have a certain amount of subjectivity to it.
Tests that exist look like a list of questions which you answer, the answers are then tabulated and assigned numbers and the numbers are compared statistically to other populations. But all you really need is a diagnosis based on professional opinion which coincides with the DSM.

You could possibly double-check your suspicions with these two on-line tests:
<=>Autism-Spectrum Quotient Test (AQ)
<=>Aspie-Quiz ^{Registering is optional!}

The test results are obviously not a formal diagnosis but it was my AQ score that convinced me it was reasonable for me to get an Adult Autism Assessment. (I was 64, by the way.) My diagnosis ended up being Autism Spectrum Disorder, Level 1 (Mild) with a note that I also satisfied the criteria previously associated with Asperger's Syndrome.

These days I think the recommendation is:
<=>- Get assessed by a licensed psychologist who works with Autism and does assessments.
<=>- The psychologist does the assessment using ADOS.

A complicating factor is that many of the traits associated with ASD are not unique to ASD. For instance, high-end ADHD also has many ASD traits. These complications are why a diagnosis needs someone who knows what they are doing.

P.S. "You don't look Autistic" is a standing joke on the Internet about dumb things people say to Autistics!

Well, I'm guessing that if Elon Musk and Anthony Hopkins got a diagnosis it would have been from a licensed psychologist who worked with Autism and did assessments, using criteria from DSM-5 ^{released in 2013} and the current ADOS ^{as revised in 2012}...and it doesn't sound like any of that would apply to you.

From how you describe your assessment, I think that alone makes it reasonable to wonder...if there is evidence to the contrary (for instance, results from AQ or Aspie-Quiz).

Your situation might be similar to mine. I'd successfully muddled my way through life to the age of 64 before I got my diagnosis. Treatment and accommodations were not needed. But I am still very glad I got the diagnosis...it explained so much! The self-understanding was great.
(Oh, and so is Wrong Planet! )

Yet, I haven't found any practical benefit from getting my diagnosis, but I am glad I got it, nonetheless. (I've tried to get one practical benefit: Get my medical providers to put things in writing for me. They seldom did that before I had the Autism diagnosis. Now I mention the diagnosis to help explain why I should get stuff in writing. I still seldom get it.)

I'm an extreme introvert so I don't value interacting with others that much, especially now that there is a Pandemic. Before the Pandemic I got sufficient interaction through my family, bride, and Mensa. Were I feeling flippant I might suggest bourbon, in moderation.

Check with your insurance, first. If an Adult Autism Assessment is covered by your insurance you want to be sure you follow their processes and procedures and, if possible, use one of their network providers. Doing it their way can save you money. Except they might be clueless. When I called my insurance provider they immediately wanted to help and promptly gave me bad information. I think Adult Autism Assessments might be uncommon enough that they had no experience with them.

The correct answer is you should get the assessment done by a licensed psychologist who works with Autism and is willing to do the assessment. (They do not need any kind of ABA certification! That is for treating Autism in children—or is that mistreating Autism in children? Opinions differ!)

You can use https://www.findapsychologist.org/ to find a psychologist. Find one who works with Autism and takes patients your age—and, ideally, accepts your insurance. Check their web pages to get a better idea if the psychologist is a likely candidate, but note that their web page will likely not mention Adult Autism Assessments (I think the assessments might be uncommon enough that it's nor worth wasting space on their web page to mention them). If they work with Autism and patients your age you'll have to call them to see if they would do an assessment—and whoever answers the phone might not be sure of that, either, they might need to get back to you.

And the assessment process was kind of fun!

I hope I've been some help and wish you good luck with this...and 2023!

I am going to assume "2021" is a typo and you were assesed in 2001. You are much more likely to be diagnosed now than in 2001 because the definition was too tight. Also, there is much more recognition of Autism in older adults.


Yes


Although you may not need accommodations and benefits now, things can always go south. It is better to get a diagnosis now when you can afford it. I would advise seeing a psychologist that specializes in Autism rather than a psychiatrist. A psychiatrist's job is to diagnose mental illness and prescribe medication to treat it. Autism is not a mental illness but a developmental disability. Medication may not be the answer, just finding out how your thinking pattern is not typical and how that has resulted in things going wrong can be very healing.


I was not impressed with the Autism Therapists in San Joaquin County,. Very little experience with adults. UCSF sounds good.

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