Looking for a positive diagnosis for AS

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I'm currently 28 and since I was a young child (2 or so) I've had pretty serious problems with social behaviour and aggression and, later in life, severe depression, anxiety and suicidal urges. Recently I've been referred for therapy and my therapist has tentatively diagnosed AS, but does not have sufficient experience to give a positive diagnosis.

I've called the National Autistic Society helpline and they're sending me some information, including the details of some experts in the field of Autism in my local area.

How did people here find out they had AS, when were you diagnosed and how hard was it to get confirmation? Obviously a positive diagnosis will allow me to get some targetted help and might also help me at work since I can go to my employer with the right information and maybe get some help.

On an unrelated note, the lady on the helpline also suggested I take something called the AQ Test to get an idea about the kind of question I'll be asked and I scored 42, which seems pretty high.

Should I be angry that this wasn't diagnosed when I was younger? Clearly the strategies I've developed for coping with AS (if I even have it) have contributed to my anxiety and depression and also caused me 20+ years of bullying, isolation and hurt.

The way I see it - you could be angry, but it's already happened so it would be better just to get on with life today since you can't change the past. Carry on trying to get your diagnosis and make changes in your life today that will help you enjoy it more. Don't spend time and effort on things you can't change when you could be making yourself happy in the present. That's what I try and do anyway since I'm in a similar situation to you and I often think back to when I was bullied at school and get very angry with my teachers. parents and the kids at school. But I try and tell myself that won't help. It's not easy but that's my aim.

I think I may know what yoy mean, I have a similar experiance.I'm 37 yrs old, and have known since I can remember that I'm not wired-up the same as my family and friends, not that it bothered me. I have been told so many times in the past that I displayed AS tendencies but that still didnt mean anything to me.
After some soul searching, I decided, (or rather got prompted to do so by my GF), to get myself sorted. So I did all the tests, reasearched all I could find, spoke to the NAS, went to my GP, got refered to my local MHT, so far they've all said they agree I've got AS. Just waiting for final assessment.
AS explains so much of why I have to do the things the way I do.I'm good at hiding my AS, but I can do it for so long then everything goes into overload/meltdown.I dont have a stress/emotional dump valve. It's not that I dont care, but I dont feel sorry/guilty when I go off.
Getting a DX won't necessarily change everything, but it will give you the peace of mind knowing why you are the way you are, and you can get some help and understanding. You know yourself better than anyone else. There's no pass or fail test to the DX, its just a professional opinion. No-one has ever regretted getting a DX. It is quite difficult to get one the older you are though as most DX's are aimed at school age children, so special educational needs can be accessed.
There's no need to be angry at not finding out sooner. The DX criteria was not universaly agreed untill '94, so many people with AS did not get screened/DX'd, and went on to have to cope on their own.
If you go ahead and persue a DX, it will help if you write everything down that you think is relevant to the diagnostic criteria, and get some supporting evidence from your parents/people who knew you as a child. Its easier to have that read by a healthcare profesional, than talk about it/answer questions, and that way you wont forget anything.
Good luck, welcome to WP.

Hi, welcome to WP

There is some info on the thread http://www.wrongplanet.net/modules.php? ... ic&t=32033


Here is some info that I wrote for someone else in a similar situation - I hope it is of help to you:

" Advocacy - try contacting your local MIND - they offer advocacy and were very helpful to me. Also do a search on the internet for AS / Autism groups in your area as these too may offer advocacy, or at the very least an opportunity to meet people in comparable situations.

Also try contacting the National Autistic Society - they can give general advice regarding getting help through the NHS and can also advise on AS/Autism groups and also possible advocacy in you area.

Regarding getting help from the NHS, you need to be really persistent. Keep speaking to you doctor, phone the local psychiatric hospital (in my area, if you phone the psych hospital and say you are struggling to cope, they can contact your doctor and demand a referral) and also ask about AS diagnosis. Where possible, try to get people's names so that your doctor can refer you to a specific person rather than just a general referral to a hospital department where you could just see anyone and not necessarily get any help.

Here is some advice I recently gave to someone in the UK in a similar situation regarding diagnosis:

"Regarding diagnosis - sorry for the long reply - but I want to give you a thorough answer.

I was initially diagnosed via MIND (as I had been seeing counsellors and not found this very helpful, so went to MIND seeking further advice).

In order to actually get an NHS diagnosis, you first need to see your doctor. Be warned though that in my experience and that of the many aspies with whom I am in contact, many doctors either don't know what Asperger Syndrome or High Functioning Autism is at all, or they have an incredibly outdated idea of what it is - for example, many people still believe that people with even mild autism don't have any feelings or consideration for others - which is untrue and actually quite offensive!

For a general definition of Autism / Asperger Syndrome, try
http://www.mind.org.uk/Information/Book ... scents.htm
or www.nas.org.uk
The latter also contains information as to how one seeks a diagnosis
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1045

So - as I was saying - you need to start by seeing your doctor and outlining all of the reasons why you think you may be on the spectrum - it will help if you can give examples of situations you have been in to illustrate your point.

Also, autism is something you're born with, so try to think back to your childhood to see if there are any incidents or problems you can remember that would point to autism or Asperger Syndrome - some medical professionals like to have a testimony from a parent or older relative / family friend who observed these behaviours in you when you were a young child.

Next, your doctor will need to refer you to someone who can diagnose Autism spectrum disorders. Depending on how understanding your doctor is, you may have to be very insistent about this. (N.B. only certain medical professionals are qualified to diagnose autism, so make sure that you are referred to someone with the appropriate qualifications).Also, if you are quite high functioning, which I'm guessing you are, some doctors will try to put you off diagnosis by asking what the point is of labelling yourself (my response is that 1. Whether or not to label myself is up to ME and no-one else) and that 2. There are certain services (such as help/support at university or support in the workplace, or access to support groups or advocacy services etc) that you simply cannot access unless you are officially diagnosed and 'labelled' - that's just how the system works.)

There are some good websites out there regarding aspergers and high functioning autism, e.g. www.wrongplanet.net, www.aspergia.com, www.nas.org.uk etc.

Word of warning - don't be put off by some of the descriptions of autism on these sites. Autism is a 'spectrum' disorder, so it is possible to have it very severely - to the extent that some people will never be able to communicate or function independently - it is also possible to have it to a very mild extent, or to be 'high functioning' - in fact well known people with / considered to have Asperger Syndrome include Bill Gates and Einstein.

The descriptions on most websites are a generalisation, so don't be alarmed if they sound a little too 'severe' to apply to your experience of the spectrum.

For diagnostic criteria, try http://ani.autistics.org/dsm4-autism.html
or http://web.syr.edu/~rjkopp/data/as_diag_list.html
or http://www.bbbautism.com/asp_gillberg.htm
or http://www.geocities.com/richardg_uk/icd10f84.html

If you can afford to be diagnosed privately, try the Autism Research Centre in Cambridge
http://www.autismresearchcentre.com/clinical/class.asp "


I hope this helps


As for being angry, I feel angry too that I was not diagnosed earlier, but I have just come to accept it. Many people are in this situation as doctors, teachers etc. just did not have the understanding of ASDs 20 or so years ago - and even now many don't understand!

So the fault was through ignorance rather than willful neglect.

Uta Frith did not translate Hans Asperger's document into English until the 1990's.

The best thing to do is to focus on the way forward. The only advantage for me of looking to the past was to realise that all the things that I was told were my fault were actually not my fault at all - it was because of my AS. So it was a releif to me not to have to hate and blame myself anymore.

But other than this, I have found no benefit in getting angry about the past. It can't be changed - all I can do is work in changing things in the future both for myself and for others with ASDs.

I am not officially DX'ed, although I am sure I am somewhere on the spectrum, thanks for the AQ test, I have not seen that one before, I scored a 37! Apparently most women score a 15, shows me why I have such problems with them!

Anyway, don't be angry it was not caught earlier if you do indeed have AS, as it has not really been considered an "official" condition since 1994. Most doctors did not know it existed prior to that, and as you can imagine, even 13 years is a "short time" in the medical world for a medical condition to be made fully aware and adopted by the majority of the medical community!

Initially too, Doctors who where aware of the condition tended to only diagnose the "worst of the worst" as far as As went. Anyone who seemed like they "functioned" at all normally, (usually just on a superficial level because that is all doctors see) wasn't a candidate for AS. We still see all the time on this forum of doctors who refuse to diagnose, not becuase their patient does not meet the criteria, but because "it is over diagnosed".

Anyway, I could go off on a tangent, but I won't!

I am sure others here will be able to help you with knowing how to get a DX firmed up. By the way, what country /region do you live in? That may help too with giving suggestions...

If she asked you to do http://www.msnbc.com/modules/newsweek/a ... efault.asp i scored 11 so i don't know how good it is i wouid ignore doing that.

There is advocacy places which can write down what you want to say and give help etc try the http://www.nas.org.uk/ or looking through google for stuff in your local area.

Well I've been in and out of counselling/therapy since I was very young. I think because I was extremely bright and didn't display any learning difficulties (quite the opposite in fact) Autism was never even considered as a possible problem, despite other symptoms. I'm actually in therapy at the moment and considered a high suicide risk. It was through that therapy that the tentative AS diagnosis came about.

I'll look into the MIND thing, I would never have thought of that. I'm also going to chase my GP for a new referral to an Autism expert to get a solid DX.

Thanks for all the supportive replies!!

Some places may send a questionire for your "parents" to fill out based on their memories of you as a younger person. I found that by talking a lot to my mom we both over a couple of months pieced together a picture of what I was like as a muh younger child.

Further to girl7000's reply, I would like to add that the CLASS clinic at Cambridge now do free adult assessments. I'm not sure how long this will last as it is based on funding, and I'm also not sure how long the waiting list will be, but you have to get your GP to refer you.

This is where I was diagnosed. First of all my GP referred me, then I was sent some forms to fill in. A parent had to fill in some forms, also. These were then returned and I was given an appointment. I had been informed the waiting list was four months. The referral was sent off on the 9th of February, and I had my assessment on the 27th of April.

The appointment itself lasted three hours. A parent or someone who knew you as a child has to attend. Both of my parents attended.