Trying to be diagnosed as an adult

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Mine was November 2004.

Now THAT'S a damn good reason to get a diagnosis! I LOVE that!

I got an appointment on Jan 24 with the only AS specialist in the state. He has hundreds of AS patients, so I'm feeling confident I'll get the correct diagnosis. Yeah!!

Yeah, that's one of the reasons I'm looking into getting DX'd.
I'm afraid my freinds back home whow I've known for years wouldn't belive me and I sure I wouldn't be able to defend myself.

I go tommrow to a shrink. My family dr wanted to send me to NC to see a dr that he thougth might have some knowledge in the area, but my insurance wont cover it, so I am going to a shrink in Greenville. My dr said that Spartanburg was not good for shrinks, so I have to drive 45minutes to the appointment. I emailed the SC autism society for names of drs for adults in the state, but never got a reply, that was two months ago. SO, I go with my papers in hand. I have had all, and I mean ALL the componants of AS daignosed independantly over the years, so my family dr thinks that having that in hand will expidite the d'x and lead to a recomendation for therepy. BUT, my insurance only allows me 6 visits. nice. I pay damn near 150.00 a month so I can pay a co-pay every visit and they LIMIT how many visits I can have for a shrink. the shrink's office can appeal, but I think that thye wont b/c I had to do ALL the leg work for the pre-visit authorizations. We shall see what we shall see.....

Same story here. Been seeing shrinks for 10 years without appropriate diagnosis. Took much work and one year just to get an appointment, and like you, I have to go elsewhere to see as specialist. My insurance co. is actually flying me to Honolulu for an appt, and before the end of the month which is good cuz I'm probably going to lose my insurance.

The current managed care system in this country sucks. I'm intelligent AND I work in the industry, and I STILL have a horrible time maneuvering through it.

Well I saw my GP today and after a lengthy chat, he agreed to refer to a shrink. I went with a load of stuff written down which made it easier. He seem to know quite a lot about AS, but not much about AS in adults.

No doubt I'll have to wait some time for my appointment to come through.

Hi there Bland

I have since altered that mind map / chart thingy a little, but I can't post the revised version cos I've lost the battery charger for my digital camera. Grrr. I need to add "loses things easily" to my map!

A number of the items on there I don't see as problems, they are just aspects of myself that may be significant for diagnosis of AS / an ASD. For example, having a visual memory isn't a problem for me at all. Having a bad memory for faces and directions is much more problematic - I am almost incapable of remembering directions and lefts / rights even though my visual memory is quite good.

I don't think I have AD/HD. I can be inattentive, but that seems to be more to do with my auditory processing. As a child I was pretty well behaved, and not very exciteable or rambunctious. I was often just sat behind the sofa with a book!

Regarding my functioning level, I get on with life OK. I have a very understanding partner, who has had some serious bouts of depression, and understands that life isn't always great. He helps me sort out forms and bills, and that sort of thing. I am verbal, and usually articulate, until I get flustered, then I become inarticulate!

Lets just say I function well enough that my mum described me thus. "There's nothing wrong with you, you're just different. If there was anything wrong with you I would have noticed."

Robin

Self-diagnosis is usually not reliable. Sometimes there's more going on than you realize. I figured out AS easily enough (once I'd heard of it), but it never occurred to me that I might have other problems. The doc figured that out right away. There may not be much in the way of treatment for adult aspies, but maybe there's something that can be done about the comorbid conditions. Last but not least, the uncertainty can be very stressful. Just knowing the answer can make you feel better. Having proof can make the rest of your family feel better, too. You never know when/where accomodations are going to be worthwhile, and it's better to have a diagnosis before you need it. What happens if you wait until you're elderly and need services but nobody will give you a Dx because your parents are deceased and your early medical records are all gone? It's much easier to diagnose autism when you are younger. You can always get it in writing and put it in the safety deposit box until you need it.

Why does this keep coming up as a concern? Does your doctor send a fax around to everyone you know after each visit telling them your diagnosis? Does your government spy on the medical system and keep tabs on the location and movement of Aspies? Who exactly is going to break down your door and take away the kids, and where will they be getting the right to do that? When I got my Dx it was between me and the doc. I asked him to give it to me in writing so I could give my family GP a copy, otherwise even HE would never know. My employer won't find out unless I choose to tell.

When you go to a psychologist for a diagnosis you don't get to pick and choose which ones you get. Their job is to evaluate you and come up with a complete, detailed and accurate assessment. If you're obviously autistic then he's going to diagnose it whether you like that or not. In particular, some comorbid conditions can't be officially diagnosed in the presence of autism, so it would be unethical for him to diagnose you with an independently occurring condition if he knew it was really comorbid to your autism.

Given your job, I find that really disgusting. Aren't you unionized? My work is also in a high-stress environment, so our union negotiated for a recurring annual budget for psychological services. We can go as often as we like, and they pay 90% of the first $1000 per calendar year (which probably works out to about 8 visits per year anyway). They also pay 100% of the cost of chemical dependency rehab and train a percentage of the employees in peer counselling so that there is always someone available to respond to traumatic stress incidents. Everything is paid through a 3rd party so the employer doesn't even get to find out who is using the service. All they get is a report of how often each service was used.

I have to wait for my "official" diagnosis until I'm off of Disability, because currently I receive it for a long-ago misdiagnosis of Schizophrenia. And even though I know I could possibly stay on Disability with a diagnosis of Aspergers, with the Republicans in office who like to slash federal funding in every possible way, it's safer for me to keep the misdiagnosis of Schizophrenia rather than get one for Aspergers. The government would be more likely to cut funding for Aspergers before they would Schizophrenia.

But I got my full assessment and they agreed I have Aspergers (an assessment which I can just take into any pdoc or psychologist or neurologist in the future) and I now receive accomodations at my university with the assessment for having Aspergers. So this is the closest to an accurate and official diagnosis I'm going to come probably for several years. I can't afford to "correct" the Social Security Office about my not having Schizophrenia.

I recently contacted some local public-health centers and psychiatric clinics, and I found that those centers do not do Asperger's-syndrome evaluations and that those clinics charge lots of $$$'s -- $250 for an initial evaluation(!). One of them had a waiting list of 5 or 6 months.

Because of that, I've had to settle for self-diagnosis.

Republicans are EVIL! All the money goes to rich people and war! Shame Bush! Sending money Americans can use to IRAQ! OK, I digress, and I show quite a few of the signs, and would like to know for closure's sake. This could be what caused my "social" problems in Elementary, Middle, and sometimes even up into high school. Even college is rough on me, as I'm just not into what most students are.

Hi Robin (Queerpuppy)

I am fourty eight years old and trying to get a diagnosis for AS.

About a year and a half ago my four year old son was diagnosed with AS, after he couldn't cope with a change of nursery. His sister (twins) fitted straight in to the new place. The contrast couldn't have been greater.

Before that I had only vaguely heard of Asperger's, now me and my wife live, breath, eat and sleep it, not least because, since reading up on the condition, I am sure that I have it as well.

My son is now at a new school because the local Primary that we wanted to send him to pretty much told us that they couldn't cope with him. However, whole rafts of child care professionals have helped us and he now has one to one tuition in a manistream school that have lots of experience with ASD kids.

I thought I traced my own problems to OCD (not diagnosed) until reading that AS people are often misdiagnosed with OCD (I don't know if 'misdiagnosed' is right, if you have the symptoms, you have it) but I am convinced now that AS is the root cause.

This leaves me with the problem of getting a diagnosis. I should mention that neither of my parents are alive. Obviously this is a problem.

However, I have been in contact with the NAS helpline, and visited my GP. THE health service in this country does seem to be in a mess these days. I have had to write a letter to the Primary Care Trust to fund my referral for a diagnosis. This decision is no longer in the hands of a doctor, but instead someone in 'Commisioning.'

I expected the begging letter to get a 'no,' but I am seeing someone within the next few weeks for an assessment.

By the way, Robin, your own particular bag of conditions bears a striking resemblance to my own, including the auditory processing disorder which I had never looked into before.

All of this stuff has hit me (and my long suffering wife) over the past year or so, and at times has been completely overwhelming. However, it has also been like opening up the book of my life, with many AAHHAA! moments. So much has been explained.

I agree with all those who want a concrete diagnosis. For me the practical side outweighs everything. As the AS parent of an AS child, I have to think of worst case scenarios. If anything were to happen to my wife I would need all the help I could get bringing up my children.

By the way, this is my first post, so hi to the AS community, on this planet or any other.