Getting Diagnosed Later in Life

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Hello,

I am a 32 year old male, who for the most part appears normal. I am married and have a decent career. Anyway, I just learned about this Asperger's thing, and it sounded eerily like me, so I took quite a few online tests all with the same result, I appear to be on the extreme side of the autistic spectrum. So, I plan on getting properly diagnosed. But I was wondering if anyone can provide any info on the actual process. How do I know if the doctor knows what he is doing? Is there a standardized method? What exactly is the process like?

I go for an initial consult next Wednesday, but I have no idea what exactly is going to happen and a little nervous. The bottom line is I want to make sure I get properly diagnosed either way. And, if I am diagnosed to NOT have Asperger's, I feel I must then figure out why I am scoring so autistic on these tests. Anyway, hope someone can help, thanks.

Hi there - well I'm a 43 year old guy living in the UK and was just diagnosed last December 2009 so I can totally relate to what you are saying. I live in London so Googled consultant psychiatrists who also specialise in autism spectrum issues so they know what to look for during the consultation. I was sent a number of questionnaires beforehand including the Baron-Cohen one and scored highly on the Asperger's side of things. My mother was also asked to complete some questionnaires but she wasn't too keen on me doing this so wasn't as honest as I was completing them.

I had to give a full description of my life but the specialist is trained to ask specific questions about my childhood and development, school and work, family and genetics, phobias, OCD, other associated 'disorders'.

I don't know where you live so if your doctor won't help - and my doctor was very sceptical - then a private consultation might be the answer. Check also if your medical insurance covers this - I don't have this insurance so I paid privately and it ain't cheap but it was worth the investment from me to get a proper diagnosis after 43 years on this planet trying to figure out what the hell makes me different to my peers.

I've been referred on to a specialist autism clinic so the outcome has been good for me and I've also let my family and work colleagues know too so now people feel they understand me a bit more. Although like you, I appear 'normal' but within myself I felt anything but normal.

Hope this helps and feel free to message me here or privately if you want any more advice or info.

Cheers
keltikboi

I was 28 when i got my diagnosis, so i know how it feels getting a late (well, almost late) explanation of your mentality (a lot of us here didnt get theirs until in they were in their 40s).

Id also check for local autism support organizations (like TEACCH, or whatever is analogous to that in your area . . . but make sure they also handle adult cases). Take note that it is difficult to diagnosis autism in adults (AS and PDD-NOS to name a few) and that the psychs will tell you that. So dont be alarmed if they give you a different explanation, but do know that there are a lot of diagnosis that are quite similar and will likely land you in the spectrum. That aside, welcome to the wrong planet.

After listening to a show on KPCC Radio discussing Asperger's I read some information and took the online tests. My score told me I was on the Spectrum. I have had issues growing up and I just assumed I was shy. I read book on shyness and it just didn't sound like me. I have communication issues even with those close to me. I remain undiagnosed and very frustrated with life. I made it through high school, I have diplomas and a Bachelors Degree. Even with all the training and education I still fail to have a career in anything. I am 35 and struggling financially. I just wish I could communicate with people better and not be so awkward. I wish I could afford a proper diagnoses and get some therapy. I feel like I am a burdon on my family. I wish Aperger's had been a known disorder when I was a child, maybe I would have turned out a little better.

Thanks for the replies.

Yeah, I live in Japan, and I know that Japan is always decades behind the rest of the world when it comes to these kind of things. We don't have the primary care physician thing either, so I am just directly going to the local university that supposedly has the best psychologist who at least claims to have at least researched autism. I live in a major city, but here in Japan, there really is only Tokyo, and then everything else. If I wanted to make sure I specifically get someone who has actual experience with adult autism, I would probably have to go to Tokyo, and even then there is a possibility that Japan still doesn't really recognize adult autism so much, so I also have my doubts about any kind of support groups. I am still hopeful and will continue to gather information, but I have also already been seriously considering returning to the States because of this.

Anyway, that was kind of why I started this thread, because I doubt the guy I am going to see next week will really know what he is doing. That's why I was hoping to have some info so I could cross-check him and whatever he says.


Penny,

Believe me, I know how you feel. I have always felt that the only difference between me and criminals, and the only thing that has saved me is my high intelligence/ability to think extremely logically. If I were even slightly less intelligent, I am pretty sure I would never have kept a job, might even be in jail, who knows. Of course, up until this discovery, I always thought it was some kind of childhood trauma that was the source of my problems. But still, although my career is decent, there have so many opportunities I have completely destroyed because of how I behave or react, which now makes perfect sense after discovering Asperger's.

Hey dear person.....

Got dx fairly recently.......been with my current shrinks for 2 years and my Psychologist has kept her observations fairly close to her chest until the last 6 months, where therapy took a turn in a different direction. I was patient for about 2 months and then asked her about the change.......she mentioned AS in passing. I did not pursue it. We kept going, therapy ramped up a notch, I became angry all the time, frustrated with the content. Very confrontational, she was really ramping me up. But I trust her implicitly, so one day I told her kindly to stop asking me about things I couldn't explain and processes that are foreign and after 2 years of therapy, I was dx with AS. I am going for psychometric testing to rule out ADD/ADHD as a co-morbid.

Any therapist worth their salt will take a long time with you to come to any concrete conclusion.......I had 36 years of psych unit stays, multiple mental illness dx and I am a female(very difficult)......convoluted to say the least.

Take care and good luck.

Mics

Well, unfortunately nothing happened on Wednesday. We went to the hospital and was promptly told that the doctor was not taking any new patients until May or so. Not really sure what to do at this point. My wife, who is a nurse and knows most of the doctors in the area, doesn't have any confidence in any of the other places I might be able to get diagnosed. Still don't even have basic info like if this country even recognizes adult autism and if there are any support/coaching for such people.

The standardised methods are called DSM-IV (USA?) and ICD-10 (Britain?).

The process is mostly written and verbal questions and answers with some observation of client behaviour, and they'll probably want at least one other person who knows you well to corroborate and enhance the information you give. Quite likely the AQ test will be the first part of the process, which serves as a quick screening test to find out whether AS can be ruled out before too much time is wasted.

It's hard to know if the diagnostician knows what they're doing or not. If you have it done privately then you can choose your own doc....the National Autistic Society can give you a list of practitioners in your area. If you search the names on the Web, you can usually find out whether they've got any particular interest in Aspergers Syndrome or not - I suspect that those who don't specialise in it are likely to underdiagnose. If you go via the health service, they probably won't give you any choice, though at least you can find out their background. Possibly it's good to come over as fairly open-minded about whether you've got it or not, because if you seem already convinced that you're positive, then they might feel you're threatening their expertise, which might make them turn awkward. Hopefully that doesn't happen often, but it's always been my experience of doctors, that they seem to have to show that they know best, so when I tell them I have anything, they tend to take the opposite view.

As you've already done the online tests and scored very high, it seems very likely that you have the condition. It can always be argued that you've unconsciously biased your answers, but it's hard to know why anybody who didn't have the condition would want to do that.

I've just been diagnosed as having Asperger's Syndrome and the relief - after all these years - of knowing WHY I am the way I am is just overwhelming and I had to share it.

At the present time, here in the UK, it's difficult to get an adult diagnosis because they prefer to concentrate their resources on younger people so I'm one of the lufcky ones. I have to thank my GP for really pushing to get me evaluated.

Are you really 74 years of age or is that a fake age? If you are that old for real, then you are the oldest here as far as I know.

I really am that old for real!

Yeah, that is how it is here too. I finally got an initial appointment on the 31, but my wife doesn't think that doctor will be any good for me, but it is the only option I have at the moment.

I also know how you feel about the relief. I feel that way too, but at the same time I don't want to think too much about it until I get a proper diagnosis.

Yeah, it's a relief to finally be able to know what it is that make us different and has made our lives so difficult, but I balk at getting a formal diagnosis. I'm just not sure that it would be of any benefit to me and worry that it could actually interfere with my attempts to get ahead. Anyone disagree? And why? I'd appreciate all serious input.

I am 46 years old and I don't have the diagnosis, but it's the only explanation I've been albe to come up with for the difficultires I have in dealing with people and other issues that have wreaked havoc with my life. I have suspected I could have Asperger's since 1997 when I read a book called Shadow Syndromes by John Ratey.

Unfortunately, I think it may be quite difficult if not impossible to get an AS diagnosis from anyone who is not an expert in adult Asperger's. I have seen two psychotherapists recently (not AS specialists). One of them I saw for six months and when I mentioned AS to her, she told me she thought I was schizotypal, which doesn't fit me at all. People with schizotypal personality tend to be paranoid and believe in odd tings, like signs and synchronicity, and "magic thinking," I am extremely logical and don't believe anything supernatural, not even in God. I'm also not paranoid; if anything I'm unusually naive. The other therapist simply dismissed the possibility of AS out of hand.

About 10 years ago I made an attempt to go to a psychiatrist who also specialized in autism, but as it turned out he was also a child psychologist who treated children with autism but knew nothing about adult Asperger's. He told me I couldn't have Asperger's because I don't have an odd speech, which is not a relevant criteria, even though some Aspies have an unusual style to their speech.

I'm lucky that I live in NYC, so I called an Asperger's specialist to try to get to the bottom of this once and for all. She hasn't called me back yet though.

I don't know what to suggest for you. Best of luck.

To Toolite, a diagnosis would be useful for me so I don't have to keep wasting my time with therapists who can't help me because they don't understand the source of my difficulties. I have pretty bad anxiety and depression so I do need their help, but I need for them to be able to understand why.

Before getting a formal diagnosis I could never be sure that it wasn't a case of my not having made sufficient effort to overcome my 'problems'. Without having the FD I would always have had a lingering doubt as to whether I was kidding myself. Now I know that I really was always battling with a handicap I can accept that I haven't done too badly so far in life.

There's also the fact that while I'm not going to go around telling everyone that I have AS, there may be times when admitting to it could make life easier.

I think I understand what you mean, Toolite, that it might be tempting to use it as an excuse and stop struggling and to say, in effect, "Well, I'm AS so I can't be expected to do/achieve that." but lying down under the restrictions of the syndrome is hellish and I'm sure most of us would keep on struggling to lead the kind of life we want to lead.

I've been to three therapists, all of which agreed I probably have AS. The first said she would run a battery of oral and written tests, taking 3 to 4 hours, and cost $350. The second, I didn't really ask for details, but when it came up she said she would have to speak to me further, and it would help if she could speak to my parents. The third offered a Dx after speaking to me and my partner for about a half hour about a variety of mostly unrelated issues (and offered prescription drugs). She didn't give a price, but said it would be less than the $350. Probably the cost of a second session.

Depends on why you want the Dx. If you're just going for ADA coverage or something, shop around for someone cheap. If you're looking for therapy, shop around for a therapists who doesn't care what you're diagnosed as (recognizing Dx's are mostly pointless). If you're close enough to be AS to have the issues associated with, but not to recieve the Dx, then the therapy would still be pretty much the same. If you're looking for info on AS, buy a book. I'm sure there's some valid reason for a good Dx, but personaly can't imagine what it might be.

Having a Dx doesn't change anything about that. Whether or not someone has a disorder or syndrome that's medically recognized, it doesn't change who they are. You can call it an excuse, but I am who I am. I do my best to get by and get along with the world, but I'm not going to intentionally change who I am to do it. I may learn new tools to use, but only in responce to specific issues, such as having a better relationship. And again, that has nothing to do with a Dx. The problems that may exist in my life are the same problems, whether some doctor or therapist agrees. And the solutions that work for those problems are the same too. A good therapist will use a Dx only as a short-cut to finding those solutions, but knowing you may have AS should be just as good.