Getting a Clinical Diagnosis of Autism Spectrum Disorder
April 28, 2015 4:06 PM   Subscribe

I am a female over 40 and will be getting a clinical psych evaluation from my state rehab agency because I've told them I suspect I am on the spectrum. I'm looking for accommodation and support via the diagnosis. I'm concerned about getting misdiagnosed.

In the past I've been diagnosed with anxiety, depression, ADHD, and/or a personality disorder and I'm not sure they're going to give me the proper test for autism. I think all the things I've been diagnosed with are part of me being autistic. Mefites who have been diagnosed on the spectrum, how did your testing go? And if what they're going to give me aren't the right tests, how do I advocate for myself?

My counselor at the rehab agency said there would be an IQ test, an MMPI, sentence completion, Beck inventories, flipping two-dimensional origami-like shapes around from different angles (which I know I can't do), and a couple of other things and it would take three hours. She said the counselor had diagnosed at least one other adult with autism. However, I've had this sort of testing before and was diagnosed, in 1994, with a non-specific personality disorder and a possible learning disability. I've since learned that this sort of vague result is typical for adult women on the spectrum.

I don't see how these tests can be used for autism and I don't trust the psychiatric establishment because of my previous results and how hard it is for adults and women to receive a diagnosis. I score pretty high on IQ and other standardized tests; it's just that I have executive function issues and social communication problems, as well as being easily overwhelmed by sensory input and needing an enormous amount of down time to recover from a "normal" day. I've taken all of the informal online tests like the AQ and RDOS and have scored well within the spectrum on them. Childhood school evaluations and tests show a lot of autistic traits (for which I was routinely bullied and punished). But the counselor didn't ask me to bring those materials to the test, or to bring my mother, who would be willing to tell her about all my repetitive behaviors and meltdowns in childhood.

I heard that there is some sort of lengthy autism-specific four-hour interview and testing process that does deal with how the patient was in childhood, but I don't think that is the kind of test I'll be getting. It sounds like what they have on offer is nothing more than a standard psych eval.

I'm scared that it's just going to be more of the same recommendations for therapy and meds and I don't think that's what I need. I think I need services and accommodations specific to autism. Twenty-odd years of therapy and meds have not solved my impairments and I definitely don't want to be put in the "personality disorder" box. I have tried very hard to overcome my deficits over the years and it has burned me out to try so hard. I completely identify with everything I've read about women on the spectrum -- not knowing why I wasn't popular or how to fit in, not understanding the layers of meaning that seemed to come so easily to others, just not knowing how people really work and finding it scary and frustrating (just to name a few).

I can't go on just "trying harder." I need accommodation and possibly even to get on disability because holding jobs has always been so difficult. What questions should I ask the diagnostician before the test? Should I not even get this test? I don't know what to do.
posted by Beethoven's Sith to Health & Fitness (5 answers total) 10 users marked this as a favorite
I heard that there is some sort of lengthy autism-specific four-hour interview and testing process that does deal with how the patient was in childhood, but I don't think that is the kind of test I'll be getting.

Where I am, this kind of careful assessment is really only offered by psychologists, and it usually has to be paid for out of pocket. (There's sometimes a sliding scale that's tied to certain loan or benefit arrangements; I don't know too much about that, and it will differ in your area, anyway.) Could you maybe save for this kind of service, or perhaps call the offices of a few psychologists, and see if you might be eligible for some kind of special arrangement? I think you're probably right; it may take someone with experience in assessing adult women for autism to really tease everything out. Have you been in contact with any advocacy organizations? It might also be worth seeing if research on autism in adult women is happening at psych departments in your area - they may (longshot) offer assessment services to the public.
posted by cotton dress sock at 4:25 PM on April 28, 2015

She said the counselor had diagnosed at least one other adult with autism.

That inspires little confidence. An ASD diagnosis is often a group effort (SLP, psychologist, GP) and if this person has only dx'd one person with ASD, I'd look for a place that actually did ASD assessment. A university psychology clinic would be an appropriate place for someone who is looking an ASD assessment.
posted by the giant pill at 4:29 PM on April 28, 2015 [1 favorite]

Best answer: The tests you're talking about specifically for autism are the ADOS (Autism Diagnostic Observation Schedule) and the ADI (Autism Diagnostic Interview). They are the gold standard for ASD diagnosis but are very time consuming (and hard to do with adults if there are no family members to report on early childhood), and they require specific, expensive, intense training and regular retraining. So your average clinician won't do them. If you want those, you will want to ask specifically about them, and look for someone with a lot of autism experience.

An alternative route to getting these tests done is to sign up for a research study, perhaps with one of the Autism Centers of Excellence, some of which will fly you in after some phone screening for the full evaluation. Researchers are more likely to be trained on the ADOS/ADI. Down side is they may not be clinically licensed and so you probably can't just take those results to get services. But you could take those results to a clinician and use them to supplement the more basic testing they do, and to get the tests into your medical record for a possible disability claim.
posted by Stacey at 5:58 PM on April 28, 2015 [5 favorites]

I wish I had an easy answer for you, but as you noted, much of this process is beyond your control. We can only guess how the therapist or agency might respond. While this is an unknown, I have a few thoughts related to the questions you asked.

To test or not:
I'm thinking that if the test isn't coming out of your pocket or insurance, then it may be worth doing - just to have an updated version of these exams, that a (possibly) more qualified psychologist could review later. -- That's if you are unable to afford or locate a psychologist who will perform the full autism exam. (I'm not sure how second opinions work, but I'm considering this option to address conflicting responses / remaining skepticism)

Advocating during test:
If you do take the test, I would stress the learning disability part. As in, "years of therapy and meds haven't been effective, and I think that maybe the learning disabilities I've been told I have get in the way. A lot has changed in the past 20 years, and I hear women like me are being diagnosed and treated for learning disabilities now." (sequencing, maybe change order and choice of words/context) .

When I was tested, I had no idea that Autism was a possibility. My focus was on LD. I think it's OK to mention that you suspect Autism, but don't stress the online test part, because it might complicate things (possible power dynamics, skepticism, dismissal, accusations of faking).

Disability Concerns:
You can apply for disability, regardless of the results. Even if they come back normal. Even if it's personality disorder or adhd or nonspecific disability. It's your choice when to apply, and they will request records from agencies, doctors, etc. Don't need autism to be approved, but process info is for a separate question.

Advocating w/other professionals:
To advocate after the test, stress any discrepancies that appear. I agree that mental health professionals are often ill equipped to deal with this. However, since you're at a rehab like place, they may have more knowledge, and may be more willing to consider how spectrum like scores impact functioning.

When I get resistance to my diagnosis, I point out the huge difference between my verbal and executive functioning scores and ask that it is considered (and accomidated). if someone tested consistently at [lowestscore] what would you expect to see? Can you see that I'm equally weak in this area? If this isn't an issue, why hasn't treatment for been more successful?

Treatment Concerns:
Finally, much like the ability to apply for disability, pursuing treatments (or just acceptance) that fit with you perceptions is something you can do independently. I don't mean complex therapeutic interventions, but discovering accommodations and understanding how you are impacted by the difficulties you described. This also involves finding ways to work with the professionals you have now, while looking for the support you would like to have.

Good luck and feel free to memail me with questions/clarification especially because I attempted to keep my response brief.
posted by bindr at 11:15 PM on April 28, 2015

I work in Autism diagnostics. Stacey covered the Gold Standard measures you would want for that specific diagnosis (ADOS & ADI), but I want to also give you a heads up that adult diagnostics are incredibly difficult, even for well trained interdisciplinary teams. Not only do we rarely have a parent, sibling, or other person to talk about how you were as a child (if you have behavioral records, baby books, etc - bring them!), but there is a lot of crossover between ASD and other complex mental health presentations, as you have noticed. It's extremely difficult to tease apart, and I can't imagine it being done well in the context of a single discipline evaluation.

I guess my one question for you would be: what are you wanting to gain from this diagnosis? There is no magic bullet treatment for Autism; likely your options will continue to be therapy and medication. We treat symptoms where they impair your ability to function. There is no cure. There is no special treatment. As for support like SSI or disability, Autism may not be a qualifying diagnosis on its own.

I don't want to mention that to bring you down - I've said on here before, if there is something about that particular diagnosis that speaks to you, and you self identify and find support and aid from lay resources, then you can do that without a medical diagnosis. I just want to caution you to not invest everything in receiving this particular diagnosis. From the outcomes I've seen with cognitively intact adults, I'm not sure it matters.
posted by lilnublet at 12:30 PM on April 29, 2015 [5 favorites]

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