Question for those who have been "officially diagnosed"

[STR]

I have a question for those of you who have been officially diagnosed (as AS, austistic, etc.).

I have never spoken with any kind of therapist/psychologist in my life, and have never been analyzed or diagnosed in any way. I have completed some of the common measurement tools used to diagnose AS, and my scores have been very high on the AS side of the scale.

Part of me would like to be officially diagnosed as an Aspie, so that I can actually tell other people that I was diagnosed rather than saying that I only diagnosed myself.

But another part of worries about the possibility that an expert diagnosis might find that I am not as Aspie after all, either because I was truly not an Aspie or because my Aspie-ness wouldn't show up in the meeting with the therapist.

So, for those of you who have been officially diagnosed, what was the process like? Do you have confidence that true AS will be detected if it actually exists? Were you worried that your AS wouldn't show up in the diagnosis?

 

[Suzanne]

Sorry for answering, when I am not an official aspie, but in one respect I am, because someone I know who's son is an aspie, said when I ventured to say that I think I am: oh, I already knew that? Stupid me, looked with wide eyes and she laughed and said: remember, my son is aspergers, so I am going to recognise it, in someone, am I not and I felt such an idiot but agreed that indeed that is right! Another who worked with an aspie, said to me ( after he said: ah Suzanne, we are looking forward to hearing your voice answer up, which panicked me to the extreme and he looked mortified and apologised for upsetting me) well I then ventured to say that I am sure I am aspergic and he sort of, hit is forehead and said: yes of course, I wondered who you reminded me of and now I know! An aspergic lad I used to work with!

I am only going to try for an official diagnosis because of how the world is ie only taking the word of those who are supposedly professional, for I have absolutely no doubt in my mind that I am aspergers and I used to think: just the tip of the spectrum, but actually, I think I am quite high now and the reason, I thought it was the opposite is because I do not have a bland face or monotoned voice or lack empathy and am brilliant at reading faces, but since then, I have learned some interesting facts and one of those is that I have learned to do these things!

From what I have read, is that the process is rather long, because it involves, all aspects of who you are: physical, emotional etc and seeing what you are like in social settings. So basically analyzing you and there is a questionnaire too.

So, again I am not official in one sense and official in another lol

 

[clg114]

I was not diagnosed until I was 62 yr. old. I made an appointment with a psychologist and saw him four times. I was diagnosed with criteria from the DSM-4 and the diagnosis was Asperger's Syndrome. Having a diagnosis did not change my life very much, I did it just because I wanted to know for sure. As for telling other people about it, you will find that problematic. Most people just do not understand AS and some wont believe you because you do not fit their understanding of Autism. About your concern that maybe you don't have AS. Maybe you don't, maybe your just gifted.

 

[On the Inside]

I had a therapist who on our second meeting brought up Aspergers, since I showed so many traits, and my life problems are in line with those common to people with HFA.

I had also taken some of the online tests before then, all of them scoring me well on the spectrum.

I was formally evaluated by two neurophsychologists at a regional autism service organization. The process took two days and included formal interview of me and a family member, several one on one evaluation tasks that covered a wide variety of functional criteria. Several other tests delivered verbally, by computer, and on paper. There was also the usual psychological tests, like the MMPI.

I was somewhat concerned that I would not be diagnosed AS, and that there was something worse going on (psycho? schizo? don't know why I would think those are any worse, really). I was also worried that there would be no diagnosis, and then I would just have to admit I'm a painfully shy basketcase with no hope of redemption.

I'm not absolutely confident that the testing is foolproof, but then, I am a terribly skeptical person. The diagnosis does seem to fit me well, and the more I learn, the more comfortable I am that it is a better diagnosis than what my original therapist came up with. I am functioning much better since I was diagnosed and have been focusing treatment on AS.

 

[Aspergirl4hire]

I'm interested in why it's a "worry" if you're not aspie at all. What are you concerned about gaining or losing--if you don't mind my asking?

 

[STR]

I'm interested in why it's a "worry" if you're not aspie at all. What are you concerned about gaining or losing--if you don't mind my asking?

I spent most of my life knowing there was something different about (and thinking there was something wrong with) me, without knowing what it was or without realizing that there could be an authentic medical explanation. I was very happy to discover AS a few years ago, as everything I read about it sounded exactly like my own experience. It was very vindicating and even empowering in some ways.

I would be at a complete loss, now, if I were to be told that I was not as Aspie and that I was just a "painfully shy basketcase with no hope of redemption"...

 

[AsheSkyler]

This lady discusses her evaluation process from chatting with the therapist, the tests, and all the doubts and worries in between including that she may not be "Aspie enough" and she'd have to start hunting all over again for an explanation on why she never fit in. I know there are a lot of differences between autistic men and women, but I think there are enough parallels there you might can find some comfort and reassurance. =)

 

[zurb]

If you need more 'ammo' or confidence to take into an assessment, you might try reading Tony Attwood's Complete Guide to Aspergers (if you haven't already), and take notes of how you compare. At least as a reference for yourself, even if you don't give it to the psychologist.
I understand the process depends a lot on the location in the world as well as the age of the client. I hear it can take anything from hours to years.
I haven't done it myself yet, but when I asked it looked like as an adult I'd do a pre-session questionnaire, followed by the session itself.
For kids, they seem to rely a lot more on the assessor doing their own personal observation and so it takes a lot longer.

 

[epath13]

I have a question for those of you who have been officially diagnosed (as AS, austistic, etc.).

I have never spoken with any kind of therapist/psychologist in my life, and have never been analyzed or diagnosed in any way. I have completed some of the common measurement tools used to diagnose AS, and my scores have been very high on the AS side of the scale.

Part of me would like to be officially diagnosed as an Aspie, so that I can actually tell other people that I was diagnosed rather than saying that I only diagnosed myself.

But another part of worries about the possibility that an expert diagnosis might find that I am not as Aspie after all, either because I was truly not an Aspie or because my Aspie-ness wouldn't show up in the meeting with the therapist.

So, for those of you who have been officially diagnosed, what was the process like? Do you have confidence that true AS will be detected if it actually exists? Were you worried that your AS wouldn't show up in the diagnosis?

I went to an Autism meeting and told everyone that I must be on the spectrum. People were very supportive, and one person said that she could help me with diagnosis. Soon I saw a psychiatrist, we talked for about 3 hours. He said it was interesting, because I was one of those typical, described in books, cases and how amazing it was that I learned to communicate so well. He and my other therapists thought it was due to my hight intelligence he would diagnose me with HFA instead of Asperger's, but he couldn't because he wasn't sure if I had speech delay or not (I said I probably didnt, but I actually didn't know). I think it depends on a doctor you see, the more experience a specialist has with Autism, the better. I'm glad that I've made it official, even though for most people it may not be necessary. Now I can wave my diagnosis in front of people's faces, when I need to discuss my kids issues it helps

 

[HappyHermit]

The diagnostic processes and who is involved in them are things that seem to differ between countries. My evaluation involved psychiatrists and psychologists, with the psychiatrists having the final say, since ASD diagnoses here are only of official value - if you want to file for benefits or services funded through taxes - if they come from a psychiatrist. Thus, psychiatrists who specialise in the autism spectrum are also, on average, the most reliable group of medical/psychological professionals to consult if you do want a diagnosis, where I live.

Even so, all professionals are not equal. People, on a more local discussion board than this one, have reported flying under the radar even for so-called experts, only to get their ASD diagnosis years later and/or from someone else. Some who were diagnosed and confident about their diagnosis being correct were later in therapy for random or related issues (e.g. depression), only to have their therapist disbelieve their ASD diagnosis. It is worth noting, though, that these people pointed out that the therapists who didn't believe they (the patients) were on the spectrum did not themselves specialise in ASD and treated persons - not specifically autistics - for depression, anxiety or something else, without any involvement in diagnostic processes around ASD.

Ignorance is still rampant, sometimes even in places where you would expect some basic knowledge as a matter of course. So my advice is to always, always, always look for someone to diagnose you who specialises in ASD. Personally, I would rather recommend waiting for as long as it takes to get diagnostic appointments with sought-after and hard-to-get specialists than with any random mental health or medical professional who may or may not know even the basics and may, in some cases, be operating on little more specialised knowledge than the general public, as far as ASD is concerned. Although there certainly isn't any shame in not knowing everything - mental health, psychology and medicine are vast fields! - many professionals are, both in my personal experience and from what I've heard from others, unwilling to own up to not knowing enough in certain areas to diagnose and treat you themselves, and those may well misdiagnose you and offer wrong (and sometimes detrimental) treatments. (And that doesn't just go for ASD, but for pretty much any medical and mental health issue.)

Sorry for the novel, but these issues are something I could write a book about.

Now, for 'flying under the radar' - that appears to happen mostly when diagnostic processes are too short, especially when someone tries to diagnose you in a single session, and if you have something that, on the outside, resembles a 'normal' life: a job, a partner, perhaps hobbies that take you out of the house, and if those things work, as in: your world isn't crumbling before your eyes. I've heard of it happening that even specialised professionals can then sometimes mistake highly developed coping mechanisms for normalcy, and the constant stress from having to cope (rather than just function as an NT would) for social anxiety or the like.

I can tell you from the local message board, though, that many, many people share your worry about diagnosis and think that they'll embarrass themselves by asking to be evaluated for ASD, that they'll be considered impostors, someone who doesn't know what real problems are... the list goes on. It's a common worry among some who are self-diagnosed, but, for one thing, very many people who got diagnosed as adults were self-diagnosed first, since ASD isn't often caught in adults who (can or are pressured to) keep their act together unless they outright ask for a diagnosis. And furthermore, if you didn't get a diagnosis of ASD, you might well get another one that you could then accept or reject, and that might help you find what it is that's going on with you.

 

[Progster]

I was diagnosed after one fairly short session with a neuropsychiatrist, and yes, I worry a lot about how accurate this diagnosis is because it is subject to the opinion of one psychiatrist. I was also very worried that I might not be taken seriously, or that my symptoms would be too mild to warrant a diagnosis, and I would pass under the radar or be diagnosed with something else that doesn't fit so well. There don't seem to be any standard tests for ASD for adults apart from the DISCO interview, and it's up to the clinician which tools or tests he or she may use. An experienced clinician may diagnose on the strength of the interview alone, a clinician with less experience may want to conduct further tests to be sure or to rule out other possible diagnoses.

 

[radasp]

Unless you are experiencing social symptoms that interfere with work or relationships, I wouldn't bother. I'm diagnosed, but no one believes me.

 

[Mrsmac]

When my husband was diagnosed he saw a psychologist for 4 appointments, filled in some questionnaires, had a bit of a chat and was given his formal diagnosis on the last appointment. I must say though the psychologist told my husband on each visit he had "autistic traits that were quite obvious" perhaps this was due to my husband asking at the end of each visit what he thought lol.
Don't worry about not being aspie enough during your evaluation, if you are it will show, especially to someone who is aware of the signs.
If you are struggling with any of the ASD problems follow the diagnosis path, if you just want to know for the sake of it don't bother. It doesn't really change anything but it does give you some answers.

 

[fuzz]

Hi

I was in very similar scenario to you. I was able to recognise it in myself but did not have an official diagnosis. My doctor (eventually) referred me to the NHS adult diagnosis clinic. They used a structured assessment called DISCO, as well as a journal of scenarios I had initially written to show my doctor as evidence of my Aspergers (which I focused on the UK National Autostic Society's 'recognising Asperger syndrome guide')

I was concerned it may not be picked up in the assessment and especially as I was taking a course at work at the same time on personal effectiveness, which I thought may further cover up the deficiencies I have in communication.

For the diagnosis I was seen first by a student clinical psychologist who did fact gathering and later by the senior psychologist. After the first session I asked the student psychologist if there was any signs I had an ASD. Of course they said it was to early to diagnose but they thought it most likely I had a what is called an Pervasive developmental disorder not otherwise specified.

I had 3 more sessions with the student, and then he talked to my mum. He found talking to my mum really useful he said. Then I had 2 sessions with the senior clinical psychologist who also met my mum. The senior physiologist suggested after my 1st session - with her - that she thought it likely I had Asperger Syndrome. Then she just needed to make sure everything was ready for a diagnosis - displaying the triad of impairments. She gave me the diagnosis following the second session where she had first talked to my mum about my childhood (I chose not to be in the room with my mum as it made me anxious to hear about myself).

To have my Asperger Syndrome / High functioning autism recognised officially was a real relief
- it helps me to know if I'm taking the best steps possible to manage the condition
- it gave me confidence - and reassured me that I understood myself
- I was also able to access support services

If you have any further questions about this let me know

 

[Keith]

I don't remember when I was diagnosed, probably as a young child. However, it's best to get a professional diagnosis than to analyze yourself.

 

[garnetflower13]

I wasn't diagnosed until my late 40's, and it was a social worker who strongly suspected. She sent me to a psychiatrist, who said it was very likely, but then assumed that I was trying to get disability payments for it. He seemed very surprised that I wasn't, and that I wanted to know just to know. I then went for testing and what a waste of time that was! The women kept looking at her watch as she proclaimed that I only had PTSD. I have PTSD, true, but I am also autistic. I gave up for a year or two, then tried again. This time I saw a psychologist who saw me for a few weeks before making an official diagnoses. She was amazed that those other shrinks hadn't seen it. She said that she preferred avoiding those tests because most were formulated for children anyway. She preferred to gather information about my history,and observe me for awhile before drawing that conclusion. I also have a brother and a sister who are severely autistic.

 

[Suzanne]

wave my diagnosis in front of people's faces,

Yes that is why I have finally decided to go for it! I know I am, so there is nothing to fear lol

 

[garnetflower13]

That diagnoses came in handy when my psych had to write a letter to my landlord about moving my next door neighbors to another unit since they were incredibly noisy and disruptive. It worked!

 

[rogersmom09]

i guess i'm in a different spot i am dealing with a 5 year old that is a poster child for aspbergers. i guess to my question is to all of you. do you think it is easier for them to diognosis a young child easier then an adult??

 

[garnetflower13]

i guess i'm in a different spot i am dealing with a 5 year old that is a poster child for aspbergers. i guess to my question is to all of you. do you think it is easier for them to diognosis a young child easier then an adult??

In some ways, yes. In others, no. For myself, it was extremely difficult to get accurately diagnosed because I was an adult, and had learned many compensating behaviors. A child can't hide things, and besides there are services available to autistic children today that weren't around when I was a child. The general way of diagnosing children is to have the parent report on the child's behaviors, and to also observe the child as well as test them in various ways.