Adult Diagnosis

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For those of you that got diagnosed as an adult how did you pay for the testing. Did your insurance cover it, did you have to appeal it, did you pay out of pocket or in installments?

I'm sort of getting pissed that because I am an immigrant and that I didnt have access to these sorts of tests and early interventions and that I am no longer a kid that now I've missed the boat in terms of getting a diagnosis.

I was unemployed and essentially homeless and trying to qualify for assistance from a Rehab organization, to get funding to retrain for a new career. In order to qualify for their assistance, I had to have a diagnosed Disability and was told that even Depression would qualify, as long as it was professionally DXd.

So I went to a local Counseling center to see a Therapist about my Depression and my itinerant status put me on a program called "Title 20" meaning that I had no means to pay, and subsidizing my treatment.

When I first met with the Therapist, I told her that someone had called my attention to the possibility that I might have Asperger Syndrome and I felt they were probably right, and asked her to note that in my file and see if she thought that might be the case. After several months, she concurred and offered to schedule me for evaluation with their staff Psychologist, who put me through a battery of tests and eventually diagnosed me with AS.

So I was extremely fortunate, in that the diagnostic process ended up not costing me anything, and in fact, the diagnosis qualified me for SSI Disability.

But I can't say I recommend homelessness and unemployment as a means to an end, there must be better options.

Wow. I am glad though that you got a diagnosis AND that you qualified for SSI. I am trying to figure out what my options are for diagnosis. So far it does not look like I have any other options except paying out of pocket but I would like to hear more about how others have gone about getting one.

I'm in the same situation - would very much like to get a diagnosis but don't currently know how to pay for it. Also, I have some other issues that are probably more pressing for me to try and address right at the moment, but I'm sick of feeling 99% sure that I have ASD and being unable to get it verified officially.

Insurance does not pay for any of it.

Prices vary. I was able to find a good psychiatrist through GRASP in New York.

The people I found in NJ would have charged $2,000, all out of pocket. I just don't have it.

This is something insurance SHOULD pay for.

Yes. Though I think, Adamantium, your current work situation shows why it's worth doing.

Absolutely, Tarantella--no doubt about that at all.

It's also just incredibly good to have this framework for understanding--this isn't just individual quirks and inexplicable failures to do the expected thing. and having a little understanding helps a little when trying to find strategies or techniques to overcome or sidestep the problems.

So you only paid for the psych visits?

Me too! That is exactly how I feel.

I only had the psych visits. The Psychiatrist told me to fill out some online forms and do a particular online test, but he was mostly interested in what he could observe in the interview. My wife was able to describe me as an adolescent and I had some details from childhood testing. He told me the diagnosis was easy, because my symptoms are not ambiguous. The psychiatrist believes that testing is absurdly expensive and not as helpful as observation and interview. I think it will be easier when they can do an MRI or something, and then insurance companies will have to pay. Right now they say the etiology is unknown so the tests prove nothing, and they won't pay. Someday testing may be more definitive.

I hope you can find a similar diagnostician in your area. $2,000 is crazy, but not knowing with certainty is hard to bear.

Good luck.

Living in the Uk. Didn't have to pay. Just went to see my GP and persuaded him to refer me. Diagnosis/diagnosed within about three months.

This thread is why a lot of the anti-self diagnosis/undiagnosed feeling is just plain wrong. Not everybody has $2,000 or $3,000 to pay out of pocket. If you do not live near a specialist add travel expenses. If you don't go to a specialist you run a considerable risk of being mis diagnosed and have to pay out of pocket multiple times which is likely unaffordable. This is especially true for females and may become more true for everybody with the DSM 5 and the backlash.

My siblings paid for it. That makes me FORTUNATE. For all who have gotten a professional diagnosis you are FORTUNATE to be in the right place, circumstances and era.
For those that are on the spectrum but can't have it confirmed due to finances or lack of understanding I admire that you to continue to believe in yourself despite the frustration you do have, and the lack of relief/explanation you deserve. If it was me in your circumstances I would have bought into/internalized the whole fake, excuse making explanations and given up.

Last edited by ASPartOfMe on 07 Apr 2014, 2:47 pm, edited 2 times in total.

I was very fortunate to get my ASD/Asperger diagnosis.

I was recently diagnosed after only about a year of being aware I might have autism. I spent about 39 years being unaware my condition was autism, and struggling in my life all the time because I couldn't fit in with anybody and people frequently got angry at me because of my oddness.

When I was a teen and struggling with strong anxiety and depression, my parents took me to a shrink, who hastily said I probably had schizophrenia and instantly he wanted to do the band-aid treatment of all sorts of medications. He seemed so half-hearted about it all. I don't think he gave a damn. He seemed to think I was just some crazy hysterical teenage girl loaded with puberty hormones and having PMS. None of the meds did any help and give me awful side effects. I felt so manipulated by him. I insisted on ending visits with that guy. Later, another shrink said I had anxiety disorder and didn't think I had schizophrenia, but back then there was little knowledge on how to treat anxiety and I was sick of meds and didn't want them to experiment on me.

I continued with my life and refused to see any more phychiatrists. I went to college some, had a few small short jobs that college friend found for me (I can't get jobs for the life of me on my own, with the exception of the interest of military recruiters). Then did an eight year service in the U.S. Army. I ended up getting a head injury, which caused debilitating neurologic migraines and neuralgia type nerve problems in my body, but they were never successfully identified so the doctors kept thinking I was malingering to get out of work. NO! I had real intense pain and I actually wanted them to help me so I could get back to work, and I don't like hanging out in hospitals and clinics, and they smell awful. The untreated pain eventually had me decide to separate from the Army because I was beginning to have difficulty doing my work and was now frequently making mistakes while in pain, and I began dreading causing any accidents after I almost had an accident while on one of my regular driving duties, but this time having a horrible migraine that blurred my vision out.

After I was discharged I began doing visits with the local Veterans Affairs clinics to help me get fixed up and treated so I can be well enough return to college or start getting back into the work force. They began working on helping me with these, and then they tried to help me get treatment for possible PTSD and 'adjustment disorder'. The adjustment disorder had been documented because I had had an angry meltdown during a long argument and interrogation by my sergeants about my behavior and issues some co-workers had with me. Some of the co workers were often irritated with me because of my eccentricity and weirdness, and some of the superiors often hazed me and others below them as a way to deal with their own stress. Some of it was sexual harassment, reprimands and punishments, threats, and marginalizing directed at me and I acted out against it sometimes. Anyway because of this adjustment disorder, the local VA decided to help me with in this psych area. My psych case person decided to help me look into an autism diagnosis because I had recently found out about Asperger Syndrome and had begun doing intense internet research and found it totally described myself and my problems.

It took time, and this case person got connected with the regional center and argued with them because they didn't want to diagnose and adult. (They denied me when I tried to contact them on my own). She battled with them and finally got them to diagnose me, and now she is helping me get with get set up with local agencies that help autistics and other developmentally disabled people get housing and jobs. It is slowly in the beginnings and I have to apply for SSI and other things for poor and jobless people because I still am too disabled to work for now. I thank my VA case person so much for this help because I doubt I ever would have gotten help or a diagnosis on my own or with help from anyone I know. Also I was finally seen by a neurologist and she is starting to work on a treatment to help get my pain under control.

There is a place in Aistin that with give you an evaluation for $500. It's not convered by insurance of course, but it seems like the best way to go. I am also tired of not having an offcial diagnosis.

My adult diagnosis happily got covered as research from the relevant department in my nearby research hospital/college partnership organization.

Last edited by Infoseeker on 09 Apr 2014, 11:17 pm, edited 1 time in total.

That's a great option, if you fit the profile. I was trying to go that way, but then discovered that the cutoff age for the research was 46 and I was 48.
If you are young enough and near a research hospital, it's a great way to get the diagnostic costs covered.