Adult Diagnosis (USA)

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I'm not diagnosed. Been thinking about getting one. Insurance won't cover it, and I'll have to save up for it. But I want to know. If I do have it, then at least I could tell my regular doctor that I'm officially diagnosed. Telling them I suspect autism is meaningless. Amazing how many doctors, even young doctors, don't understand what autism is. Some of them still think it's all Rain Man.

For those who took the test, did it also cover other potential co-morbids (like OCD, ADHD, anxiety)? Since co-mordbis are said to be very common with Autism, it would be nice to have a one-shot assessment listing all conditions.

I also fear that it's somewhat arbitrary. Like, it's up to the test administrator to say I have it or not. People here in previous posts have said they were tested two or more times with different results.

Anyone have any advice? I'm getting older, and I feel like my suspected Asperger's/autism might be more of an issue as I age.

In my own case, my comorbids were all diagnosed first, so I am not sure if the standard battery of tests for ASD would cover all of the others.

I paid out of pocket for my ASD testing, ~$2000, and I have an official diagnosis now as an adult. While I dont regret testing, I will say that unless you need school or workplace accommodations, it really wasn't worth the expense in my case. Having the official diagnosis as an adult in the US has not opened any new doors to treatment that I wasn't getting with therapy already. It may help with peace of mind (In my own case it did not - it made me feel worse, "this is permanent - theres's no fixing this")

But depending on what your own motives are, it might be worth the expense.

Mine wasn't in USA but it seemed to be the same procedure and they used a lot of American standardised tests.
It took over 12 hours.
It wasn't subjective at all.
The assessor reported on numerical data scores rather than a subjective opinion.
My tests were also sent to a second company for double-blind comparison.

I had previous diagnoses of C-PTSD and Mutism.

The ASD report reconfirmed those ^.
It also confirmed MDD, GAD, Agoraphobia, and Sensory Processing Disorder.

I had separate testing for ADHD two years later at another clinic.
They seemed to test ADHD / ASD at the same time.
My ASD place didn't look for ADHD.

Cost was around $2900 for ASD, I think?
I'd have to look it up.
I got $1500 back on insurance but had to forfeit a year of therapy for that.

Here's a blurb from my information package:

I can't say regarding the co-morbids. When I arranged my assessment I arranged for an Autism assessment. I was surprised that the results also reported a comorbidity. I have no idea how many other comorbidities were tested-for and not-found.

It is unfortunate that you checked and your insurance won't even partially cover it. I got partial coverage from Medicare (United States). The psychologist who did my assessment offered one unsolicited cost reduction for my assessment; based upon the background material I provided she concluded that an IQ test wasn't needed, maybe you could do the same.

Something else that is unfortunate is that, in general, my medical providers seem to ignore my assessment...even though I make it a point to tell them. One of the rotating cast of cardiologists I've seen complied with my request to put things in writing, but that made her an anomaly.

But I was still very glad to get the diagnosis. It was nice to know with certainty.

I had an ASD diagnosis at age 60 two years ago as part of a broad neuropsychological exam. My wife wanted me to take it. I paid $2000. Since it was during COVID it was all remote by Zoom.

Could I have lived without it? Sure. But it sure explained a lot of things.

My assessment for Autism also returned GAD (much to my surprise at the time). I now realize I am probably ADHD also, but I didn't know to "present" it. At evaluation, I asked if I could unmask, but it was such a new concept to me and I didn't know how to. So I defaulted to my "well-behaved, don't-throw-me-out" persona: attentive, listening, back straight, feet flat on the floor or a gentle cross at the knees... although I did accidently knock over a cup in a moment of feeling. I got my diagnosis, my daughter doesn't want one (yet?), nor does my mom (ever?). Good luck with your choice!!

finding competent doctors to give adult diagnosis in the USA is very difficult indeed. A neuro psychologist or a psychologist with an autism specialty and previous experience is ideal, but very difficult to find. there is no medical billing code for "autism diagnosis" but often insurance will cover a portion if billed under "psychological testing" or "neurological testing" .... for the most part finding diagnosis in the us involves an extensive search for the proper professional , travel to get there, often including food and lodging for a couple of days for each appointment, and a very large co payment on top of it all. Those who live in highly populated areas where there are teaching medical hospitals or big hospital complexes seem to have access to more services and this is not surprising. Because the understanding of autism as neurological developmental in nature is so new, most practicing professionals will not know about it, but rely only on what they learned in school years ago. Since autism will at best be only 2 or 3 percent of their practice (talking general practitioners, not specialists) there is no incentive to keep up to date with autism information.
Those reasons and many others are why the majority of autism groups readily accept self identified individuals. We know from our own experience how difficult and expensive, demoralizing and traumatic the search for diagnosis and subsequent likely misdiagnosis can be. Since diagnosis today is based on behavior of 8 year old male children, and we are none of us like we were at 8 years old, no wonder diagnosis is so hit or miss! Please keep exploring issues surrounding diagnosis and the nature of autism. When we begin to say "aha" and "so thats why" ... we begin self understanding as always having been autistic , but never having known or understood. Self identification as autistic is very useful to daily living problems. The more we know about autism, the better we understand ourselves, our histories, our struggles and gifts, what a relief to finally have an answer to so many painful "whys" of the past!

Thanks.

To autisticelders: Well-said. It's amazing how difficult it still is to find a diagnosis. A lot of it seems to be out-of-pocket, and rather arbitrary. The closest place to me, only a town over, said it's all-day testing for a fee of $5,000, completely out-of-pocket, with no guarantee of a diagnosis. All other places that do adult testing are rather far and don't take insurance either.

For those adults who did get diagnosed in adulthood, count your blessings.

The psychologist who did my Adult Autism Assessment did not take insurance, either. But after I paid her bill I submitted it to my insurance and they sent me a check for part of the bill.

I was diagnosed last year at age 58. I had established regular weekly therapy sessions with a clinical social worker who is herself autistic. She eventually referred me to the one psychologist in our area who specializes in autism. He’s actually semi-retired, only seeing some long standing patients and performing a limited number of adult assessments. Since my therapy is covered by my health insurance, the referral for assessment was too. I did have to pay $500 as a co-pay or deductible.

There were pre-appointment assessment tools I had to complete and return before the in-person assessment. The in-person took just over 5 hours and left me with a massive headache and on the verge of meltdown. I had a really hard time driving the 45 minute commute back home - it ended up being more like a 90 minute return trip. The headache lasted a couple of days, but I woke up the morning after with a strong feeling of emotional relief. I remember recognizing that at least some of what I’ve experienced and dealt with over the years was undiagnosed autism, and not the personal & moral failings as some people had always shamed me into seeing them.

The psychologist diagnosed me with ASD level 1, requiring supports. He also included a diagnosis of “Unspecified Anxiety Disorder”, telling me that he classified it as unspecified because anxiety wasn’t what he was assessing with me that day. I’m glad I got the diagnosis and overall feel relief in knowing. I also recognize the degree of privilege that enabled me to get assessed & diagnosed; it wasn’t a hard or expensive process for me but it was one that included a lot of waiting. However, accommodations & supports are hard to access and rarely available where I live without a LOT of self-advocacy. Two clinicians have also indicated that I likely experience ADHD as well; one of them increased the dosage of a medication I’ve taken for years, in order to help with ADHD traits that have been causing me issues at work. That has actually made a really positive difference with some of my executive function over the past couple of months.

The cheapest option is to look around for a place that does clinical training and get tested by a student "extern" working under the supervision of a licensed psychotherapist. That's how I got tested. Paid about $300 total for about 10 hours of testing, at $20 per hour of testing plus $100 or so for the report, if I recall correctly. Some universities have this option, and so do some private therapists.

If there is no such place in your area, you can try GRASP.

Both of the above options tend to have very long waiting lists.

Like everyone else said, if you're not a vegetable then getting it won't solve anything.

If you think you are, just use it to understand yourself, not to explain yourself to others.

Or research studies, where the testing is free; perhaps you might even get paid a small amount.

For me, it was just putting a label on aspects of myself that I had already recognized and accepted as mostly un-"fix"-able.

The label was important to me, though, mainly for the purpose of deciding which subculture(s) might be worth building my (and my partner's) social life around. Since then, I've been doing what I can to help build the autistic community (as an organized subculture) around here.

^ You make it sound like a lifestyle.