Can I have some advice from adults who have only recently been diagnosed?

[Morgado]

Hi there, my name is Dale and I am 26.

I have recently started the process of being diagnosed with AS. After many, many years of feeling very "different" from people and somehow knowing that I do not quite relate to the world, and after many years of involvement with Mental Health services that never really went anywhere, they turned around two months ago and said to me "Have you heard of Asperger Syndrome?"

Until that day I never knew what it was. I had heard the term before but I had no understanding of it whatsoever.

Now, they have put me on a long waiting list. I have to fill out questionnaires, I need to write statements, they want school reports, etc. They have turned around and said that they think that I have AS and they left me to learn all about it by myself, which has been very difficult. Luckily someone put me in contact with someone who has AS who has been very very supportive and for the first time in my life I actually feel as though I am talking to someone who understands me and can understand how I look at the world.

Unfortunately, although they have said that they are confident that I will receive a positive diagnosis, all of this stuff that I need to provide, and being told that I need to wait 8 months before the process will be completed, is proviing very difficult. My housemate has written a statement explaining what he sees as my difficulties, and he will be accompanying me to the appointment (which apparently will be in late spring/ early summer), I have been asked to provide a statement explaining a lot of my childhood and why my family are not reliable witnesses, and they are asking for school reports and other things. This is all very difficult for me. I am used to analysing the things around me, and this is causing me to try and analyse myself and my own behaviours which is becoming rather uncomfortable, and also rather difficult as it feels as though I am having to look at myself through the eyes of another person.

I would just like to ask anyone here, who has been through the process of being diagnosed as an adult, if they found it difficult as well, how they dealt with it, and also to ask if this level of information, and feeling as though I am somehow having to do their work for them, is normal?

It is starting to become incredibly hard for me. And I feel that surely they must know how hard it must be, as they are a specialist unit for people with ASD. If they know how hard it can be, why put people through this?

I am rather confused.

Could someone please give me some advice or their own experiences?

Thank you,

 

Dale

[something_different]

sorry I have no advice.

 

but welcome anyway

 

 

[Scotslad]

I dont think its usual them asking you to do it all, they asked my parents, but as you said you cant get anyone else to do it. Other then your housemate.

You could call the NAS helpline, they are really helpfull, the number is on http://www.nas.org.uk

 

Mikey

[LicklePaulie]

Hi Dale, I am an adult who was diagnosed with AS two years ago.

 

The problem you are having is that, because you are addressing a developmental condition, those who are assessing you need to find evidence of the stages you developed through as a child (at what age you first did certain things and any anomolies from "normal" development) as a mainstay to making a diagnosis. In most cases they will approach parents, etc, as these will have been most directly involved over the greatest amount of time whilst you were growing up. It appears from your post that you have not granted permission for them to be contacted by the clinicians and that is fair enough but, as I've already said, you will need to supply reliable evidence of the way you behaved in comparison to other children and, with all the best will in the world, it is very difficult to present an objective view yourself. Therefore, things like school reports, etc, are invaluable to the process.

 

It can be very hard to self-analyse, especially when you are not clear about what it is you are analysing, but the ASD unit is not shirking its responsibilities and leaving you to do all the groundwork for them. AS is not something that is easily identified by interview alone as the Diagnostic Criteria is all based upon your stages of development - in other words, what you are currently undergoing is not unusual at this stage.

 

I know this doesn't make it any easier for you but, at least if you understand WHY you are doing all this research even before you get to the assessment process, you may accept the need for doing it. I hope all goes well for you...

[Kathryn]

Hi Dale,

 

Welcome to the forum.

 

I've merged your threads and put the topic in Beyond Adolescence. I think you might get more replies there.

 

Good luck with the process of getting a diagnosis - there are several members here who have been through it and I'm sure will be happy to share their experiences.

 

K x

[Tally]

Hi Dale and welcome to the forum.

 

I was diagnosed last year, aged 25.

 

My situation was different as I was the one to suggest AS. My counsellor had not heard of it and the psychologist thought I was just making excuses. In the end I got assessed privately and my diagnosis has been accepted by my GP.

 

The fact that you are being assessed on the NHS at all is remarkable. Most people have to go through a huge battle to get that, and many simply cannot get it at all. Even though you have been referred to a specialist ASD unit, they probably do not have the resources to gather this information for you, which is why you have to do it yourself. As you are already in mental health treatment, the mental health team should be able to help you collate the information you need.

 

The best thing I would recommend is that you learn as much as you can about AS and try to meet with other people with AS if possible.

[warrenpenalver]

Maybe write to an old school teacher who knew you well. Thats what im doing at present as one of the school teachers at my school spent loads of time looking after me and giving me somewhere to go during break time and even after school at times.

[ian stuart-hamilton]

AS (particularly towards the borderline) is difficult to diagnose and needs to be distinguished from other potential causes. The more information that the specialists can gather, the better. I know it's a long wait, but things have to be done carefully.

Edited January 9, 2009 by ian stuart-hamilton