Therapy without a diagnosis

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I'm 58 years old.

Back in December I set the wheels in motion to get formally diagnosed, because I wanted a formal diagnosis, simply because a formal diagnosis is formal and I wanted that, because my informal diagnoses were only informal ones and I felt I couldn't have complete peace of mind until I had a proper, official, formal, piece-of-paper type of 100% guaranteed correct diagnosis. Anyway, now in April I have just started therapy, which was offered to me INSTEAD of being sent for a diagnosis. My therapist listened to my story, read up on Asperger's and decided that the goal of the therapy should be to help me to adjust to the idea that I have Asperger's and to come to terms with this new knowledge/situation. So rather than getting a diagnosis what I have got is therapy to come to terms with the condition the diagnosis would have diagnosed. Maybe I am chasing a chimera in thinking that I need a qualified medical doctor to sign a piece of paper and then I can stop worrying about my AS being unofficial. The issue probably seems ridiculous to anybody taking the time to read this.

From reading this forum I have learned that a lot of people find that their doctors, psychologists, therapists, psychiatrists or whatever don't take them seriously when they say they have Asperger's even though they are sure themselves that they do. I have the opposite problem because everybody agrees immediately that I have it even though I'm not 100% sure myself unless some really rigorous person in a white coat at a prestigious institute gives me a certificate telling me I do.

It seems strange to be receiving therapy for something which no doctor has diagnosed. Or am I being too literal-minded? (Yes)

It was a wonderful relief to be able to be openly, unashamedly autistic for just about the first time ever, so I suppose that I must have AS as everyone seems to think or it wouldn't feel so good to stop covering it up.

I too am 58 and also unofficially diagnosed but given all I've read, all the people I've talked to, the stories my parents have told me, the things I remember...there is no question in my mind that I have AS and I'm dealing with it and it has helped my marriage immensely for my wife and I to work together on it.

Having worked in health care for almost 40 years, I'm not convinced that practitioners are the end all to getting the official diagnosis.

And I asked myself, why do I need it. It isn't going to change anything, it isn't going to make me do anything different than I'm already doing and I doubt someone could dissuade me from what I already know.

I have therapy without a diagnosis and find it really helpful for me, a diagnosis would be counter-productive because i'm an adult working with children and there's too much stigma :/.

Did you start your therapy to deal with AS-related issues? I mean, was that the presenting problem? I think my therapist is a bit unsure what the goal of the therapy should be, because she is a behavioural therapist and what I am looking for is initially the opposite of a change in behaviour, namely to accept the fact that I am neurologically a bit different and can't do many of the things that "normal" people do socially but am good at being in isolation doing stereotyped activities endlessly . I feel that I need to accept completely the fact that I am different before I can try to be less different. For example, I used to stim for about an hour a day until last autumn, when I started to worry about getting a "real" diagnosis. At that time, because I felt my ASD was being called into question (by me at least) I kind of rebelliously lost the desire to suppress my stimming as I had done for the last 40 years. So I tried out my old childhood stims, thought "wow, that feels really good" and then thought "if I don't have ASD how come I could do this all day?". So, as a way of defending myself against my own doubts I decided just to stim all the time at home (while doing other things, of course, otherwise I'd have a pretty unproductive time). However, I know that if I was really 100% convinced I was on the spectrum I would stop stimming like I do now and go back to the little bit of stimming that I used to do and that is a kind of absolute minimum that I can't eliminate even if I wanted to and don't need to eliminate anyway because it doesn't cause any inconvenience. My stims are classic autism stims and aren't even remotely "high-functioning", whatever that might mean in this context. So here I am since months ago looking totally autistic inside my four walls and appearing more or less normalish outside in the world. My therapist accepted at once that I have some form of autism so I don't have to "prove" anything to her. I think I'm trying to prove something to myself. Hopefully it will be possible to clear this stuff up in therapy.

That seems like a good attitude. I suppose I'm still at the stage of calling my "quasi-diagnoses" in question. What I find strange is that when I am convinced that my peculiarities all hang together as an autistic "syndrome" I feel a huge sense of relief, and then I think "this level of self-understanding and self-acceptance is too much of a beautiful feeling for it to be real", and then I am afraid that I may be deceiving myself. Up to now I have my self-diagnosis, my partner's diagnosis of me (we've been together 10 years and she is convinced I have AS), an opinion expressed by a health worker in an autism centre, a number of opinions people have expressed here on WP and the acceptance by my therapist that I have an ASD and taking that as the starting point of the therapy. Maybe one day I'll be able to shed the doubts I have.

There's no reason to not seek an official diagnosis if you just really want one, but there's also no reason to not accept that you have it when a therapist says you do.

I kind of liken this to when I have the flu. I don't go to my doctor immediately. I go to the medicine cabinet and take Nyquil for a few days while feeling miserable at home. If it goes more than 4 days with high temperature, then I go to the doctor for prescription medicine, but even then, my doctor doesn't usually take a blood sample to confirm without a doubt I have the flu. She's a certified medical practitioner, and her diagnosis without formal tests is just as admissible in court, and still works for me to receive a prescription that's going to make life better for me.

Last edited by NicoleG on 27 Apr 2012, 8:16 am, edited 1 time in total.

Well, you don't have to "prove" anything to yourself. Diagnosis or not, you either believe it, or you don't.

Diagnosis hasn't proven anything to me-- other than that my life just got a hell of a lot harder, now that anyone who wants to mess with me has the neurological tin can tied to my tail to use against me (the facts, but more the stereotype and the stigma).

I can't recommend in favor of it, and don't really know what you hope to get from therapy either.

You are who you are-- much like proving your status to yourself, you either accept that or you don't. I've done this a couple of times-- I realize this is a very autistic statement, but in the end it comes down to an either/or decision: "I accept myself this way" or "I do not." You waver back and forth for a while, then you pick one and stick to it.

Behavioral therapy-- good luck with it. You have, apparently, learned to "act normal" on the street long ago, or you wouldn't be 58 and asking questions about diagnosis. That's all behavioral therapy can do for you-- teach you how to "look NT" for the comfort and convenience of the neurotypicals around you (and also for your own safety, since I'm sure you don't need me to tell you that the world is full of people who will happily hurt you for being "too different").

You may try a different sort of therapist. Dunno. Good luck.

BuyerBeware wrote:

Well, you don't have to "prove" anything to yourself. Diagnosis or not, you either believe it, or you don't.

Diagnosis hasn't proven anything to me-- other than that my life just got a hell of a lot harder, now that anyone who wants to mess with me has the neurological tin can tied to my tail to use against me (the facts, but more the stereotype and the stigma).

I can't recommend in favor of it, and don't really know what you hope to get from therapy either.

You are who you are-- much like proving your status to yourself, you either accept that or you don't. I've done this a couple of times-- I realize this is a very autistic statement, but in the end it comes down to an either/or decision: "I accept myself this way" or "I do not." You waver back and forth for a while, then you pick one and stick to it.

Behavioral therapy-- good luck with it. You have, apparently, learned to "act normal" on the street long ago, or you wouldn't be 58 and asking questions about diagnosis. That's all behavioral therapy can do for you-- teach you how to "look NT" for the comfort and convenience of the neurotypicals around you (and also for your own safety, since I'm sure you don't need me to tell you that the world is full of people who will happily hurt you for being "too different"). You might try a different sort of therapist. Dunno. Good luck.

End of quote.

I pressed the wrong key and removed the white quote box by mistake.


I'm not too sure what the therapy is supposed to bring either. Here in Germany you can get therapy for "Anpassungsschwierigkeiten", which means "difficulties adjusting" and it refers to situations like divorce or the death of someone very close to you, where you need help adjusting to the new situation. My therapist is going to do 20 sessions with me under this category, paid for by the health insurance, the idea being that coming to terms with having AS is a "difficulty adjusting". What I hope to get out of it is just to have someone to whom I can reveal my autistic past and present and talk it over, maybe also getting some kind of external confirmation that I don't just think I'm different but that I really am, because I am completely ALONE with some of these things. You can't just tell your circle of friends (which I don't have anyway )that your personality and habits add up to an autistic syndrome and ask them for feedback. I think it will help a lot if an NT therapist confirms for me that the way I am looks wierd to an NT. I have always masked my autistic traits, so I have never really been SEEN, by anybody, so I have no confirmation of who I am, only of my NT mask, so that I haven't even had any feedback from anyone ever that it is a mask. For instance, one of my strangest traits is that I spend huge amounts of time doing classic autism stims, but no-one knows that (apart from one person at the autism centre and people here on WP). I can't talk to any NTs about that or my other peculiarities, outside of a therapeutic situation. As a child I spent hours and hours and hours alone in my room just doing classic autism stims and NO-ONE knew before last September. As an adult I have learned 20 languages and have no social circle whatsoever. I can't talk about that kind of stuff with people at work over a cup of coffee in the staff room.

That's exactly the kind of help I am finding on the forums and meeting with a few people at a monthly meet-up. I'm otherwise perfectly capable of enacting my own behavioral modifications as necessary - I just really hate it when I am not aware that I need to do so and things blow up in my face before I am made aware of it. Friends had apparently been dropping subtle hints that I haven't been picking up on. Now that I understand why I haven't picked up on them, and why my mask was falling apart at the seams (I was too obsessed with not just fitting in, but with getting approval and attention due to low self-esteem), I can again make the necessary adjustments and perhaps try again later to re-join the social scene if I want (although, I'm still in indecision about that right now).

20 languages is impressive. I have a friend who is a computational linguist, and knows multiple languages and programming languages. He's able to pick up and learn the languages and nuances quite easily due to his synesthesia, so well in fact that when he visits another country they think he is a native because he doesn't have an odd foreign accent.

There is a monthly self-help group at the autism centre here but I didn't find it much help. Everybody just sat there and talked about nothing in particular. I had loads of really personal stuff I really needed to talk about but it didn't seem appropriate to do so. None of the people there created the impression that they were noticeably different to the general population, which surprised me as well. Except that they weren't chatty and I didn't get the usual feeling of alienation I always get in groups, I suppose because they weren't all trying to give all sorts of social signals out. Some of the participants didn't say anything at all. I think the group really needed someone to lead it. I am glad now that I have a therapist to talk to, though, because the stuff I want to talk about is too specific to me as an individual person to be discussed in a group.

Your linguist friend sounds as though he is really talented. I have no special talent for languages like that. It has just been a kind of obsession like learning train timetables or memorising the telephone directory. I once said to a relative about my language skills that "anybody could do it" and they were shocked. But it's true. It's just due to a repetitive behaviour which ends up producing a big pile of knowledge. Though I do have very good visual imaging which helps sometimes. Basically I find social contact unrewarding and tiring so I sit alone whenever possible reading foreign language texts. I suppose that technically I should want to stop doing that and to be more social, but I don't. The therapist seems a bit puzzled what to do with me because I don't want to change, but just to accept myself as I am. I had a therapist 33 years ago (my god, am I so old?) and he kept trying to challenge my way of being and get me to change. I don't know if my current therapist has that agenda. According to wikipedia ( ) in behavioural therapy the therapist and the client agree on a contract regarding the aims of the therapy before it gets under way. My aim is really just to get some feedback from a professional as to my present and past level of deviation from the norm. Then I intend to just carry on as I always have. Since finding out about AS I have lost my feelings of guilt about not being normal, since I have had to carry this difference from the norm my whole life and now feel instead that I've done enough adjusting and hiding. I suppose I do have AS but even if I don't the same point holds because in that case I would just have a private syndrome of my own.

Last edited by Halligeninseln on 27 Apr 2012, 3:17 pm, edited 2 times in total.

Yeah, the one I attend is guided by a psychologist who specializes in AS who also has an AS son. It's specifically set up to be a free 1.5 hours for people to ask questions, share ideas, and make contact with others versus being a generalized social gathering. We sit in a circle and discuss things as one group, rather than everyone just being there for socialization. It's usually an equal mix of parents of kids with AS and adults with AS representing themselves, although there's also married couples that will come in to also get some understanding. It tends to revolve around two themes, 1)the parents/spouses sharing their experiences and frustrations, and 2)the AS adults sharing their experiences, usually in an effort to help the parents understand what their child is going through. It really works about as well as these forums work, only it's good to have the interactions in real time and be able to put real faces and emotional responses to the words that are being said.

That sounds much better, to have a proper specialist running it. There is apparently no psychologist in this city (of 500,000 people) who specialises in AS. It is necessary to go to Berlin for that. The US seem much further ahead on these things.

I'd rather be in Germany than America, but that's not exactly related to the topic.

I would think a city of 500,000 population would have someone at least. For comparison, I live in the Dallas-Fort Worth area, and so far the group I've found is over on the Dallas side of things. I haven't located any groups on the Fort Worth side, and I live closer to Fort Worth. It doesn't mean a group doesn't exist, but right now I feel fortunate that the place I go to in Dallas is only an hour drive for me, and only once a month. I have located a few psychologists in Fort Worth that specialize in ASD, but at the time I was looking for a group, which was a bit more difficult to find. I do feel that I got lucky finding this group.

Speaking as a Psychologist, your therapist doesn't really seem to know what she's doing with you. (just my opinion, yours may differ)

If you went to one in order to get a diagnosis, then that is what you should be focusing on first.

If you feel you need that official piece of paper then go and get that first, otherwise, you won't really be able to properly start accepting this and going through the entire 5 stages that you're going to have to get through in order to fully accept this and start working with it in your life.

Having someone who understands ASD and has some experience with it is also important (they don't need to specialise, just have some experience). Otherwise they aren't going to know how you think and the probability of them helping you if they can't understand how you think and how you see and experience the world is going to be minimal without some experience with ASD.

If you have an autism group you already go to, you might want to ask them for some suggestions for therapists who have worked with ASD before.

There's nothing wrong with a therapist who specialises in cognitive behaviour therapy, they will actually be very helpful to you if you can find the right one. If you can find someone who has dealt with ASD before, they will be much more able to help you sort through which particular things you want to accept and keep and which you would like to change.

I went to my GP to get a referral for a diagnosis. She sent me to a psychiatrist. The psychiatrist said (literally) "I don't know why she sent you to me. How should I know?" and offered me a referral for therapy. For three months I couldn't find a therapist because no-one answered the phone or my emails. In the end I got a reply. They said they did behaviour therapy and what I needed was analytical therapy and should go somewhere else. I said I'd take the behaviour therapy, simply because no-one else was answering the phone or my emails and I didn't want to spend another three months looking. In fact I'd given up on the whole idea by the time I finally got a reply from this therapist and said so too. My problem was and is that I'm completely unsure whether I have some form of ASD or "just" a primary motor stereotypy disorder (producing my classical autism stims) + a personality disorder (producing my social withdrawal) + narrow, obsessive interests (which would just be narrow, obsessive interests). I really wanted a specialist to clarify this but in the meantime thinking about these things has got me so obsessed with my own disordered state and so aware of it that I just need a therapist to talk to. I am deeply disordered in my social instincts (or lack of them). When I look at the ICD and DSM I meet the criteria for AS, but I also more or less meet the criteria for the (horribly-named) schizoid personality disorder ( which my therapist had never even heard of and thought was schizophrenia, which it sounds like). I feel so stupid not knowing what is wrong and why I'm so different in my social behaviour to everybody else.

I went to my GP to get a referral for a diagnosis. She sent me to a psychiatrist. The psychiatrist said (literally) "I don't know why she sent you to me. How should I know?" and offered me a referral for therapy. For three months I couldn't find a therapist because no-one answered the phone or my emails. In the end I got a reply. They said they did behaviour therapy and what I needed was analytical therapy and should go somewhere else. I said I'd take the behaviour therapy, simply because no-one else was answering the phone or my emails and I didn't want to spend another three months looking. In fact I'd given up on the whole idea by the time I finally got a reply from this therapist and said so too. My problem was and is that I'm completely unsure whether I have some form of ASD or "just" a primary motor stereotypy disorder (producing my classical autism stims) + a personality disorder (producing my social withdrawal) + narrow, obsessive interests (which would just be narrow, obsessive interests). I really wanted a specialist to clarify this but in the meantime thinking about these things has got me so obsessed with my own disordered state and so aware of it that I just need a therapist to talk to. I am deeply disordered in my social instincts (or lack of them). When I look at the ICD and DSM I meet the criteria for AS, but I also more or less meet the criteria for the (horribly-named) schizoid personality disorder ( which my therapist had never even heard of and thought was schizophrenia, which it sounds like). I feel so stupid not knowing what is wrong and why I'm so different in my social behaviour to everybody else.