questions about autism testing as an adult

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1 I live in the U.S. is the testing for adults generally expensive? That is $300+

2 how long does testing take?

I am a 27 year-old guy looking to get tested. The reasons are that several people have said I have autistic traits and I am trying to figure myself out. After doing some research I have determined it is possible for me to be highly functional, however, the way I am can easily be attributed to other mental issues and genetic defects. Paranoid personally disorder, social anxiety disorder and dyslexia being the mental stuff. Though none of those explain why I get routinely confused in social situations.

There's no standard test. You could get anything from a half-hour interview to a day of neuropsych testing.

Autism is, as you know, mostly diagnosed in children, so the standardized evaluations are all geared toward children. A professional who knows what adult autism is like would be the best person to figure out whether you have a missed diagnosis.

Typically, an adult with a new diagnosis of autism will have had a hodgepodge of other diagnoses, none of which seemed to fit. Occasionally they will have slipped under the radar as an "eccentric" or "nerd", and often their family helped them get along. Each case is different, each person copes differently when they have autism and don't know it, and need help but don't get it. Diagnosing autism in adults is more of an art than a science.

Testing for adults is about as expensive as any new diagnosis at a psychologist's office... it really depends. Some places offer income-based treatment and a very low-income patient may pay next to nothing. Some places are quite expensive. If you don't have a psychologist already, go to your family doctor and ask for a referral.

Do bring any paperwork you have on those previous diagnoses--dyslexia, social anxiety, paranoid personality, whatever they labeled you with. If autism is a better explanation for those traits, then a reasonably experienced psychologist might be able to put those previous labels together and see if there are any patterns.

I just got my testing done. I took the ADOS which was only a couple hours in addition to a survey and phone calls for my parent and a mentor-like friend. I was able to do the testing on the first day I met with the psychologist. I had to do extensive research to find someone within a reasonable distance from me who would A) Give me an evaluation since I'm an adult, and B) would accept my insurance. It was a long process of researching and emailing psychs and autism places with a 100 mile radius. One place referred me to another until I finally found someone who would help me and would be covered on my insurance. I eventually did find someone though after maybe 6 or 8 weeks of research. I only found one other who actually would help me and they wanted to do something closer to a full day of testing. They said the cost would be close to 2k and they didn't take insurance, so I knew I had to keep looking. Not sure how much my doc charged, but I imagine less since the test took less time and she's just a single psychologist instead of a whole mental health center.

My testing took a total of four weeks, not including the wait time between making the appointment and going for the intake intervew (that took eight weeks, though I've heard depending on where you go that it can take anywhere from 6 months to a year.) Testing from a private practitioner typically costs upwards of $2,000, but if you can find someone your insurance will cover, that will help, or if you find some place like a university campus or a specialized clinic, you may get it for less (mine cost $500 through my university based on my unemployment.)

The intake interview will be the point at which they ask you, "Why do you think you have autism?" so it's a good idea to have a list of reasons, either mental or written, prepared for the day. If you want to write all your symptoms out and give them to the doctor to look at on his own time, that's usually fine too. You can probably expect that they'll want to have some contact with one or both of your parents, be it a questionnaire about your childhood, a phone call, or coming into the office, though I do know of older aspies who got diagnosed without their parents' involvement.

The two "gold standard" tests that psychs use for testing for AS are the ADOS-2 (autism diagnostic observation schedule, second edition) and the ADI (autism diagnostic interview). The former is a semi-structured social engagement exercise that lasts about an hour, whereby the doctor will engage you in different activities to see if you respond to his social "presses" in an autistic manner; it's scored on-site by an observer. Given your age and language abilities, you'll probably be given the highest module, module 4 (they have three lower modules for children and those with less expressive language); the cut-off score for autism on that particular module is 10 and the cut-off score for autism spectrum is (I think) 6.

The ADI is an extensive paper interview given to your parents to fill out about your past and present behaviour: I don't know how it's scored because I wasn't given it, but the data should be fairly easy to find. They might also give you an IQ test: autistics often have a unique pattern of strengths and deficits in their IQ scores; high verbal, low nonverbal for aspies/HFA, high nonverbal, low verbal for moderate/low functioning autistics.

My testing took 8 meetings: 3 screening interviews/talks.
I told, why I suspected AS, told about my life and my relations to others, my relations to my family and what I remembered from early childhood and later.
I was told about AS, asked to make faces and a few other things.

The testing itself was a WAIS-IV and that took 5 meetings: There were picture stories, block designs, puzzles, memory trials, verbal understanding and reasoning, knowledge + detection of inaccuracies, - and more, I think.
At last we went through the results - and the typical ragged profile was there.

Last edited by Jensen on 25 Apr 2014, 4:40 am, edited 1 time in total.

that depends on whether we have intelectual disability or not and those of us who are assessed in the low functioning spectrum always have ID,mine was equaly low on both verbal/non verbal.

For me, I was told it's "highly likely" I would be diagnosed by a psychologist but the actual formal process takes about 8 separate sessions, costs between $700-$2000 depending on how many tests they would like to do and won't offer anything other than proving what I already know and is not covered except in rare cases. Plus they demand parental cooperation and that is simply not going to happen.

To me, it's almost like getting a complete head to toe physical, MRI, X-Ray, CAT scan, etc to prove that you have a broken finger but the Doctor still won't believe it until they get a parent to confirm your symptoms for you. I am so textbook a skilled psychologist should be able to pick up on it immediately and one psychologist did, although she only diagnoses children. If I ended up unemployed and homeless it might be worth it but I have a stable, steady, secure full-time job where everyone knows my quirks and accepts them so it's not a complete waste at this stage but it would have been nice to know as a teenager!

That's not even getting into the fact I have seen so many incompetent know it all "experts" in my time they would probably misdiagnose me with OCD, ADD, ADHD, Bipolar or even BPD when I can clearly demonstrate I do not meet the criteria for any of them. I once had of our cities most well respected pediatricians label me (the quiet, shy, bullied kid) a troublemaker and a class clown. After that point it's hard to take an "expert" seriously. The money would be better spent on more productive avenues like fitness classes, social skills training and dates but having said that I would jump at the opportunity if someone was willing to pay for it and my parents would cooperate.

Testing is expensive for adults. There is a few reasons.....

There are such few "treatments/services" for HF/Aspies, insurance figure *you're passing well enough, why bother*. Our insurance refused to cover DH testing which ran 2K out of pocket. Cheaper to treat the depression, OCD, anxiety etc...than to give you a diagnosis the insurance company won't pay for treatments. Ours covers nothing for Aspergers.

DH testing took all day. You are paying for a professional's time to administer, interview, number crunch data, and churn out a report. The better the clinician, the more they can get away charging. We had to go to top rate Autism specialist, who's diagnosis and testing is bullet proof. DH was looking into legal action. The weasel insurance companies didn't even question this guy's report.

IF you are filing for SSI/SSDI, you want someone who knows exactly what the government is looking for to say you're disabled. You don't want half ass testing. That's gonna cost.

The testing range in my area was $800, by a psychologist who wasn't really an expert and did no testing to $2K for our guy who administered the gold standard testing and wrote a report.

Reason prices are high? Insurance usually doesn't pay for adult testing, and it's a sellers market. Good clinicians can name their price, and high prices keeps the disability seekers down to a bare minimum.

Thanks for clarifying, KoR