The Autism Diagnosis Quest – Part 2

 

So time to continue the quest. This is the second in a series of posts on my real quest for an autism diagnosis. If you haven’t yet, you can read the first post here for some perspective.

So, my first approach, being an uninsured adult, was to approach the EAP – Employee Asssistance Program – thru my work to see if they could help. What they did was refer me to a local professional psychiatrist. And wouldn’t you know, the price for an analysis and assessment was around $1800 USD. This is for three sessions for someone to make an educated guess as to why you are different.

Many autistic adults tend to self-diagnose. There is this very real misconception that if you can communicate or do anything functional in the neurotypical world that you must be neurotypical yourself. That’s because most autistics learn to do something called social camouflage. This is particularly evident in autistic females. They learn to imitate and reflect a group and therefore can lead to a lack of diagnosis. There is currently no medical test to diagnose autism. Therefore, we pay for educated guesses.

So getting a professional to take a look at you will cost an arm and a leg. Many insurances only reduce by a percentage so even insured this would cost me quite a bit. Obviously for a lower income person like myself, this is no option.

So I started calling around and thus went down the rabbit hole. The neurotypical autism rabbit hole where there is no standard for assistance and a strange disconnect from resources.

The first call I made was to MHMR Tarrant County. They gave me some numbers to a few places but their first question was whether I was suicidal. Obviously, no, because life is a good thing but that’s what happens when you call county health lines. They did, however, give a few numbers.

Next I called Easter Seals. They offer programs for kids, and some speech therapy for older people, but for people who appear more functional, they don’t offer much assistance. Easter Seals does do good things for families, but for autistic adults, their services are limited. This may vary from location to location however, as these are non-profit places who work with limited funds.

The next two Autism Centers I called were focused on children. The way children receive a diagnosis, like my son did and my sister did, is by being observed by a professional and they make an educated guess based on their behavior. This is usually defined by awkward social interaction, repetitive behavior and other things. But once again, I stress, there is not a validated medical test for autism. I left messages on one line and didn’t get a call back whatsoever.

My EAP offers counseling for stress and grief, but sadly, no such diagnosis service or resources. They offer five sessions a calendar year, counseling for things like grief, depression, stress and other things. This is a good resource, a good crutch and support system, but unfortunately, it won’t get me a diagnosis. But it is good to have an ear for my issues.

After jumping thru phone lines and messages and relays, I finally stopped and had a snap of common sense: maybe I should ask another autistic person.

Many places have local self-advocacy groups or support groups of actual autistic people. DFW has a good one too, that I hope to make it to one day if my schedule ever lines up. I decided to ask them and they info-dumped on me as only an autistic person can, and thank them for that. The insight was valuable.

Turns out clinics at local universities are the more affordable options. They do asssessments on a sliding scale depending on your income so the amounts can be fair. At one university, they do the assessment for me around $975, with half up front and the rest payable over time. And one person from the autistic group told me that was actually high for they heard. So this seems to be the better option for me.

And then, the waiting game. They will put you on a 3 to 6 month waiting list and will notify you when you can be called in for a session. So now, I wait.

To be continued.

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3 thoughts on “The Autism Diagnosis Quest – Part 2

  1. Gustuf, your blog will soon be added to our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to customize your blog’s description.
    Thank you.
    Judy (An Autism Observer)

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  2. Have you looked into a university clinic for a diagnosis? For example, Loyola Clinical Centers? There is one location in Baltimore and one in Columbia. I can tell you from experience as a former graduate student there, that although the tests and write-ups might be done by graduate students, they are highly supervised – particularly these comprehensive evaluations. Best of luck. Maybe I’ll see you at MAGfest!

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    1. I actually looked into UNT’s clinic and am on their waiting list. Not sure if we have Loyola down here in Texas. But thank you for your input! Any information shared can help others too. I will sadly not be at Magfest but my posse will be performing onstage at CHIPSPACE at 6pm Saturday! Say hi to Claire aka Ava Hart – she is autistic!

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