Talking outside this forum about autism and aspergers

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(Disclaimer: I'm not diagnosed with anything)

I am in my late fifties and so I was never diagnosed with autistic traits as a child because nobody had heard of Asperger's in the 1950's and 60's. Since coming on this forum I'm more or less certain I'm somewhere on the spectrum, though it takes a big shift to make in one's self-image.

Anyway, I now realise there's no one outside this forum I can talk to about it. For me it is a really important life-event to face my Aspie or Aspie-esque nature and to see how my autism has heavily influenced my life and thinking for nearly 60 years.

So I thought: I have to talk about this to someone.

But because I am probably an Aspie I have a very minimal social circle, with no friends apart from my girlfriend who I see every weekend (we have an "Aspie-friendly" relationship).

So then I thought as a last resort: I'll phone the evangelical church hotline (I'm not a christian but it was the only idea I could come up with).

I tried to explain to the person that I just wanted to talk about autism and that I felt I needed to get an official diagnosis.

Well, unfortunately she began to explain away every autistic trait I was saying and told me that people read about appendicitis in books and then think that they have it, identifying every ache and pain with appendicitis. She did give me her time but ended by saying that we all have our quirks and I obviously was doing all right so everything was ok.

I have: a) an obsessive special interest which has dominated my life for 30 years (I can read 25 languages at a pinch, 18 or so fluently)

b) exhaustion when I am around other people

c) repetitive actions (I watched the same series of YouTube videos every day for 5 years without noticing I was doing anything odd).

d) a childhood spent going into my room to flap my hands and enter my own autistic world.

I manage ok in my life and have lived all over Europe, so I can present myself as normal for short periods and on the surface, but I'm not.

Today I'm going to talk to my girlfriend about it ("What do you know about Asperger's syndrome"?) even though I'm not diagnosed as having it.

It doesn't seem to me that I'm only imagining I have some form of autism. Has anyone faced a similar problem getting taken seriously and how did you solve it? I'd really like to hear from you.

Well most of us started from suspicions before seeking diagnosis. If people don't suspect they have problems, why would they go see doctors? I'm afraid talking to a church person you don't actually know was not helpful in anyway. They're not trained in psychology or anything, you really shouldn't expect them to give you anything more than their "stock phrases". Start by talking to people who know you very well is a good step, like your parents, partner, siblings, old friends.

Try some of those online tests listed in the sticky above and you might get better idea of if you have it or not. Then you can decide if it's worth the time and money to get a diagnosis. Three years ago I didn't know anything about autism or Asperger's. Ignorance on the issue is very common, even for people who have every trait of it. I pretty much expect people to know nothing about it and not think anything about it. Only those who are closely related or work with (diagnosed) autistic people tend to understand. We have three diagnosed people in my family (and two more suspected ones), yet I'm sure only I and my husband know enough about them. We tried to send links and printed info to our family, but they mostly just ignore them. I wouldn't be surprised if some of them still think it's just all lame excuses for lazy behaviors or lack of discipline (even with 3 diagnosed cases), luckily they're not stupid enough to say that in front of us.

Don't expect too much out of other people. It's very likely that most of them know nothing and won't bother to learn anything about autism.

You know, it sounds like maybe you should try to find a good psychologist (who is qualified to assess for ASD in an adult), to talk things out with and maybe get diagnosed at the same time. It sounds like you really do need to talk to someone about it.

-- I just think that talking to people like the person on that church hotline could do you more harm that good. I'm not diagnosed with an ASD, but my experience with other health problems (that are also 'invisible') is that people generally don't care and/or see mentioning it as grasping for an "excuse". So, they try to minimize it or swat the notion down (even if it's a diagnosed condition). I.e. "Oh, I get tired too, all the time!" (I have a neurological heart condition.)

I think part the problem for me was actually actually a Theory of Mind error (and I'm not even a fan of that theory). I was expecting other people, who had no idea what the experience of living with the condition was like, to somehow automatically understand it from my POV. Or, maybe that's a normal human expectation; I dunno.

You could be right about Theory of Mind. I did just expect the person to know what I was talking about, when actually there was no reason why they should.

When I first heard about the Theory of Mind issue I thought "I don't have any problems like that" but maybe that's not true.

Actually I thought at first that "Theory of Mind" referred to thinking that people HAVE minds and that autistc children don't believe they do (like the solipsistic position in academic philosophy).

I have noticed over a lifetime that I completely misread my parents' minds, so that I'd come along with something expecting them to approve and to be happy and then I'd get the completely opposite response, leading to what I used to think of as 'crucifixions' (of me by them). Like going 'home' in the university holidays, just sit in my room quietly studying (which I thought was what I was supposed to be doing as I was at university) and getting suddenly thrown out of the house onto the street for being quiet. As far as I was concerned I hadn't actually done anything wrong at all and still don't know what it was all about. My father just didn't want me there at all but I never found out why. At the time I felt a great sense of hurt and injustice but maybe I had done something wrong by just sitting in my room.

Yeah, I saw someone here recently make the point that rather than ToM being about knowing that people literally having their own thoughts, it's actually about knowing/utilizing it in an intuitive sense.

Overall, I don't know about ToM. I think there is some truth to it, but I think the reality may be a lot messier than the simple way it's stated.



Well that sounds pretty awful and inexcusable of him, whatever the case about misunderstandings. One person can have communication problems, but the other side can at least try to communicate better if they think their message is not getting through.

Oh, another good thought (IMO) that I've heard about ToM is that maybe the problem isn't lacking it so much as not sharing it, due to different life experiences, and different sensory and emotional processing. I.e. NT's can make empathic mistakes with people on the spectrum, as well as the other way around.

@ OP I recently decided to seek diag. My first meeting was absolutly hillarious > Not only could she not pronounce it properly... she had to look it up in her little cheat book, 3'x5' Then made me sit there while she read the description,
She says, from talking with you, (5minutes) I don't think you have Auschburger syndrome. WTF?? I even reiterated asperger syndrome several more times correctly to give a hint. not a clue.

Make sure you talk to a qualified individual.

granted she was just a counselor, but really. don't tell me "nope you dont have that."..

A good friend of mine has her masters in psychology and IS a counselor. We think weve narrowed it down to
this VV
http://en.wikipedia.org/wiki/Semantic_p ... c_disorder

As Y-pod said, start out by doing the online tests - don't bother consulting people who are not specialists in diagnosing autism spectrum disorders in adults.

PS: I am about your age (late fifties) and I was diagnosed just a year ago.

I started out with the online tests and scored in the "you probably have Aspergers" range, but I don't really set too much store in the tests.

I didn't mean to say I had consulted the person for a diagnosis. But unfortunately that's what she started to give on her own initiative. It was the only one place I could find where you can call and talk to someone if you have a crisis. I did tell her I just wanted to talk about it, not for her to give an opinion but that didn't seem to stop her. The only reason I called her was because I felt too embarrassed to tell my girlfriend (who I should normally speak to) that I had been dealing with the question of Aspergers. I just thought it would be good to talk in a non-committal way with a complete stranger before talking to her. I have now broached the topic and asked her to read the wikipedia article on Asperger's and tell me what she thinks (she has known me for ten years and can compare the article with me). the important thing for me was to bring my partner into the picture.

PS: I am about your age (late fifties) and I was diagnosed just a year ago.[/quote]

Did you work out for yourself that you had it and just get the diagnosis to confirm your belief, or did the diagnosis come to find you?

Do you feel better now you know?


As I was talking to the counsellor woman I realised I was completely missing my cues in the conversation, falling in on just about every one of her sentences, which is one of the things I answered "no" to on the tests, so I don't think the tests are that reliable.

As i noticed I was falling in on her sentences I said "I've just realised I'm falling in on your sentences" and she said "and so you think you're autistic because you're falling in on my sentences?". The conversation was a disaster.

You say you are about my age. I notice that a lot of the people on here were diagnosed as children. Presumably the tests are very different for adults? I even feel there is a difference between early adulthood and later life.

"Doesn't spontaneously seek to play with children of the same age" needs to be updated for example, though in that case it's easy enough.

I actually have very little confidence in the "experts". I had a psychotherapist when I was 24 and learnt (almost) nothing. He seemed to think I just needed to change my attitude and be more sociable. As though I could THINK my way to wanting to interact more. But I suppose in those days no-one knew about Aspergers. I used to assume I was schizoid, because they like to be alone a lot too, but I don't think, feel or act as a schizoid. It has more to do with reducing stimulation and focussing the mind on repetitive actions.

Last edited by Halligeninseln on 30 Sep 2011, 1:39 pm, edited 1 time in total.

It's harder for qualified therapists to diagnose Asperger's in older people, because we've learned to mask so many characteristics. The smart ones don't try, and send us to someone else who can. The stupid ones just go ahead and try, and go with whatever guess they come up with. I was going to my local Mental Health Center for prescriptions and talk therapy for my chronic cyclical depression. My daughter had had a couple of (church) counseling courses in college, and of course knows me better than anyone else in the world. She suggested to the Mental Health people who were working with me that I might have Asperger's, and while they did know that I had some traits, didn't feel that anyone there was qualified, so sent me to an expert at the State Children's Hospital (mental, residential), about 50 miles away, who did diagnose me with it. I was 65 at the time.

I don't know how you'd go about getting that kind of setup in your area, (areas vary enormously, even inside states of the US), but do try to talk to a Social Worker, or something like that, who knows the ins and outs of your systems in your area.

I'm only about 30, but I recently found out, too, and my head is still spinning as I realize "Oh. That's why that happened." What's frustrating to me is that by the time I was in 7th grade, it actually was being diagnosed, and everyone missed it. I became a teacher partly out of a sense that most teachers were generally terrible for kids...but didn't realize why I thought that, or which kids.

I recently went to my first diag. appointment too. The counselor seemed understanding, but the testing coordinator? came in to meet me and basically suggested that I didn't have it because I'm married and I have a teaching contract. This might get interesting. In the meantime, I've printed out a checklist to take with me to my next appointment, since I basically am no good at communicating with people from a couch.

Here is the checklist: http://www.autism-world.com/index.php/2 ... teristics/

That's quite a thorough check-list. Not too sure how to score it though.

From what some of you are saying, the experts aren't very expert at all. If the testee has to teach the tester what he's testing for before he tests why should the testee think the test is reliable or that the tester knows what he's doing?

I think the issue is that because it's a relatively new diagnosis (1995), most testers are only familiar with Asperger's in children. Children tend not to date, marry, or be employed. Adults, by virtue of time, can also learn a lot more social skills than what the testers are used to seeing.

As for the list, it isn't scoreable. For me, I think it will be helpful to check off the symptoms that I DO have and hand the sheet to the "experts," so I don't have to try to explain this to them.

I've known for about three years, and have well over sixty years of memories to go through, so my head is still also spinning with the "That's why THAT happened". The whole thing has become my most recent Special Interest, and going through my memories a great source of entertainment. But anyway, you're young enough that your parents or (much) older siblings, or aunts/uncles might still be around to tell them what you were like when you were a child. You might want to take one with you. The PhD who did me put down "makes good eye contact" on my evaluation, and I was able to tell her about remembering learning that, from drama and debate classes, and speech classes, and Lector training, all the way back to my mother thinking that I was lying to her if I didn't look her in the eye (so I learned to look her in the eye whether or not I was lying! ) When I was in my teens, it was already a habit. I don't know how many people remember how old they were when they learned shoe-tying, but that was also something that I could remember for myself, mainly because of being humiliated by being a "big kid" in the second grade and still not able to do it. I still can't catch anything someone tosses at me, because I never did learn to catch balls. I learned how to dodge them, because I got so many bruises from their hitting me.

At first I just did all the online tests, and occasionally discussed it with various people who had lots of experience with ASDs, and came to the conclusion that I probably had either BAP* or AS. I was also researching some other issues relating to sound sensitivity. After a while - at someone else's urging - I decided to do something about my sound sensitivity problems, and so I chose to see a specialist in ASDs, because that way I could get a diagnostic assessment AND get help with my sound sensitivity.



Yes, I think so. It can be a bit up-and-down for a while, because it is one thing to think you probably are an Aspie, but it's another thing to be told by a specialist that you are. I have been seeing him for about a year now (about 13-14 sessions) and it has been helpful with managing anxiety and stress levels, and with managing my sensory sensitivity problems. He also raises other issues as we talk over whatever is going on in my life at the time (fixations, work stresses, etc).


Actually, I don't understand what you mean by "falling in on your sentences". It is not an expression I have heard before.



I am in my late 50s - which is "about your age", I think. My psychologist uses the AQ Test, which was designed for adults. There are different tests for adolescents and children.



First - I studied psychology at university, so I understand where psychologists are coming from (at least, theoretically). Second - I deliberately picked a psychologist who was a specialist in ASD and who was recommended by someone that I trust (in this case, the recommender was the highly regarded expert Tony Attwood). Third - unless the psychologist specialises in ASD, their advice could be a complete waste of time. I don't particularly have time for psychiatrists myself, unless medication is required.

By the way, when you were 24, Asperger's Syndrome did not exist as a diagnosis, at least in the English-speaking world. It wasn't even named AS until 1981 and wasn't an official diagnosis until 1992 (non-US)/1994 (US). Back then people did not understand AS at all and the advice you received is not surprising, considering the ignorance of AS at that time. Even now there is a lot of ignorance about AS, even in the health professions (even among general psychologists), but more than 30 years ago that ignorance was total.
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*BAP = "broad autism phenotype" - i.e. Asperger-type personality, but need not any problems requiring clinical attention. Most tests really just show how BAP you are. The psychologist has to determine whether you actually have clinical problems as a result of your Asperger-type personality, which would turn a "BAP" label into "AS".