Adult Diagnosis

[darky]

I have been seeing a Physcologist. For things un-related to AS, well I thought they were unrelated, but it turns out the physc thinks I have AS. I have wondered ever since my children were dx but I have always felt different. This has been a life long problem for me as when I was 5 I had a brain scan which was abnormal and they thought I had temporal lobe epilepsy. I was seen at the age of five because of violently lashing out at loud noises, covering my ears and strange phobias which I remember well. I attended a special needs playgroup from the age of 18m because of my violent and challenging behaviour. According to my notes, when I was 4 I contributed into breaking my 4 month old baby sister's legs, and when I was 18m I gave my other sister concussion and that's why I attended a special needs playschool. I only found this out 2 years ago after getting my hospital records because I had memories my mum said were not true

 

The lady I saw said she could not dx me but she is looking into who can. I am beginning to understand a lot more of why I do what I do. For example, when I have been out, I need to come home and sit quietly in the dark with little noise to de-fuzz. I understand now why I can't tollerate the school runs, thank god my hubby does that now. The more stressed I am, the more sensitive I am and cannot bear being touched. I am not vain, can't understand anyone that is, I don't do small talk. Hate saying hello and hate saying goodbye just as much. I am very black and white and very rigid in my thoughts and can't pee in public. I have been treated for depression and OCD although it's never worked. I have very acute hearing, I am obsessional about food, and can't bear certain smells also I cant navigate myself round anywhere! I gave up my job as home carer because I could not tollerate the changes in my work program and I kept getting lost

 

Anyway, get to the point, how easy is it for adults to be diagnosed? How did it feel to you to get a diagnosis? Does it help?

[bid]

Quick, cos I've got to go to bed!

 

I always felt different, as you say. In 2005 my youngest DS' paed. suggested I might consider an assessment for a dx of AS at Elliot House, NAS diagnostic centre.

 

Long story extremely short, local health trust wouldn't pay for Elliot House, so seen by local mental health team in 2006...OMG how horrific was that? Seen by a psychiatrist who basically told me to pick the label I felt most comfortable with, but I couldn't have AS because people with AS don't care what people think, don't have any successul relationships and live solitary lives!!

 

He did however write in his report that I presented with some traits of ASD (and was 'clinically well-dressed'!! ). On the strength of this my lovely GP referred me to Simon Baron Cohen's clinic in Cambridge. I got my dx from there in August 2007.

 

For me it's been a huge positive, but a very emotionally challenging journey of developing self-awareness, etc.

 

Good luck with getting a dx!

 

Right...off to bed!!

 

Bid

Edited February 27, 2008 by bid

[Tally]

Hi Darky,

 

I was also in treatment for depression and OCD when I first heard about Asperger's. Medication made me feel worse (which I now know is fairly common in people on the spectrum) and "talking treatments" never helped either as I am not very good at verbalising my feelings. To cut a long story short, when I raised the issue of AS, they did not believe me, things went very bad and I ended up accused of being all sorts of things. They tried to send me to all kinds of group therapy, whether it was relevant or not, as they felt that the reason I could not make friends was because I was intimidated by people, and that I would make friends if I met other people "with problems." When it did not work they accused me of sabotaging my recovery.

 

. . . Anyway, I was eventually discharged from the mental health system, stopped all medication, started the divorce process, and started to feel a lot better.

 

After a year I decided once again to seek assessment. I went to my GP, who said that we need to rule out a mental health issue first, so I had to be referred back to the mental health team. I saw a CPN who was very open and honest with me, and even gave me printouts of the notes she kept on me (well, she said they were all of them anyway). I had two sessions with her, where she said I had obviously done a lot of work by myself, and that it made sense to get assessed for AS, but that it would not be possible on the NHS. I pushed a bit but they kept saying no. In the end I went private.

 

If you can afford to go private, it would save you a lot of hassle, and might end up being your only option anyway. Most people would want to discuss your early development with a parent before giving a diagnosis, as they need to be sure that the symptoms are lifelong. If you mum is not likely to cooperate, your hospital notes should be enough evidence.

 

If this in an NHS psychologist you are seeing, you may stand more of a chance.

 

The NAS has a database of professionals who can diagnose AS. They could tell you or your psychologist who you need to see. There might be other professionals who aren't on the list, but it is a good place to start.

 

For me, the diagnosis has really helped me feel more positive about myself. It has been a huge factor in my recovery from depression. Simply 'knowing' in my own mind helped, but the diagnosis helped me to believe I was right, and made me feel more comfortable about seeking informal support and meeting other people with AS/autism. It's also enabled me to tell my employer, so if I need any adjustments in the future, I know I can ask for them. I still haven't found the courage to tell my colleagues yet, but I'm getting closer. It's also helped my family to understand me more and support me in difficult situations.

 

When I got the diagnosis I felt very relieved. I would have been left very confused if they had said it was not AS, because there clearly is something different about me. It helps to undo some of the accusations from the mental health team. Even though it can't wipe my medical records, it does help to undermine their accusations officially, to some extent at least.

 

I also felt a bit sad, that I was different enough to be labelled with a learning difficulty. When I read the write up, I felt a bit sad because I hadn't realised my differences were so obvious. Of course, it focussed on my difficulties rather than my strengths, and I feel OK about it now.

 

It made me feel really good to photocopy it and send a copy to my GP. I was going to send a covering letter with it, but I decided that as I didn't have anything nice to say, I probably should say nothing at all. I felt like taking it to the mental health centre and telling them all to shove it up their backsides

 

So in conclusion:

Not easy at all.

Easier if you can go private.

Definitely consider it!

[darky]

Thanks for you replies. Tally your experiences seem similar to mine in that I have had lots of therapy and they encourage me to talk about my feelings and my past as if that has a bearing on how I am feeling. This has confused me to heck and I have ended up being discharged and feeling worse than I did before. I don't speak to my parents now, or rather they don't speak to me, but my hospital records reveal a lot so I think that would be enough. This woman I saw 2 weeks ago siad she just did not know what to do with me. I really do hope now that I can get things sorted as the past few years have been a huge turning point in my life and to finally get some answers would really set me free completely. After the problems I have had with my parents and the confusion of life, I think this will be a positive thing for me and I can be, finally free. What I have learnt about myself has already had a positive effect on the children getting a dx I think will help me help them all the more.

[Mumble]

Ditto what Bid's said (I was dx'ed by SBC at Cambridge). I was never clinically well dressed though

 

It's made a huge difference to me in that I can understand myself and don't have to worry that there's something else horribly wrong (trust me, I do have an imagination where this was concerned!!!! ). It's also helped those who care about me to understand me. Others - well, they probably wouldn't understand with or without the dx.

[warrenpenalver]

I had two sessions with her, where she said I had obviously done a lot of work by myself, and that it made sense to get assessed for AS, but that it would not be possible on the NHS. I pushed a bit but they kept saying no. In the end I went private.

 

That is COMPLETELY insane that the NHS is refuses to diagnose a recognised condition within the ICD-10!!! :angry: I can understand resources may not be available everywhere for adequate treatement!!

 

Imagine the public outrage if the NHS said to someone with possible cancer: "sorry we dont do cancer, plan your funeral or pay for treatment yourself"

 

We pay our taxes for public healthcare for any medical condition not the select few illnesses they choose to bother with.

 

It annoys me that our quality of life is considered worthless to this government.

 

How important is access to your parents/carers in diagnosis???

 

I ask as my primary carer until age 11 was my mother who is now dead and my aunty and uncle since age 11, but i am not in contact with any family members at present.

 

I do remember seeing some form of child behavioural specialist privately for 2/3 sessions due to the level of violence with my twin brother, but this was in late 1980's and all i know is it was in the Chichester area so i feel i will be unable to get any medical records from them.

 

Would getting back into contact with former school teachers be of benefit if they remember??? I remember one who used to look after me alot from age 11-18 protecting me from bullies and trouble when people tricked me to get me in trouble. She also used to look after me at her home when my aunt and uncle were absent at work and expected me to stay at library until 5 or 6pm.

 

I may pressurise Navy counsellor to help me as although they have no experience themselves, they do have access to full NHS and private facilities and can jump waiting lists on grounds of needs to get Servicemen back operational as quickly as possible. I would have to sell it to them very well to make them do it.

[bid]

I have a feeling Mumble had support from her academic tutor, rather than a family member?? Apologies if I've got that wrong.

 

My mum was involved in my dx process, and came with me to the final clinic assessment.

 

(Just make sure you're 'clinically well-dressed'! )

 

Bid

Edited February 28, 2008 by bid

[Mumble]

How important is access to your parents/carers in diagnosis???

You will find, I think, that all clinics/psychs offering dx state that they need to see the patient with a reliable informant who knew the patient in their formative years, usually a parent. They need to know that the symptoms being described have been present across and causes issues in functioning across, the lifespan.

 

This caused me a real problem, because I only have my Mum and to say we have a poor relationship would be an understatement. She refused to come to the assessment with me.

 

So, my tutor spent several hours on the phone between clinics, etc etc, and especially CLASS who were really helpful. However, input was still needed from a parent, so as my Mum was being particularly unhelpful it was allowed that this was done by postal questionnaire. I suspected that this wouldn't happen, but 'luckily' my mum thought it was a perfect opportunity to write down in detail what a horrible horrible child I was and adult I am (she took full advantage of the instructions to use extra sheets where applicable) - what's scary is how much her essay reads as the dx criteria for ASD.

 

In addition, I took along all my school reports from the age of 2 1/2 - 18 and these, especially the primary ones, give a strong indication of something being different.

 

I have a feeling Mumble had support from her academic tutor, rather than a family member?? Apologies if I've got that wrong.

For the actual clinic assessment, my tutor came with me and was fantastic - not sure I would have got through it without her to be honest (or there in the first place - really wanted to run away as the building got closer) - it was a totally draining experience. It was useful her being there as she was able to offer further insights. Oh yeah, and tell them that she suspected ASD from her first meetings with me, but hadn't been able to say anything

[bikergal]

I mentioned that I'd heard it was difficult to get a diagnosis on the nhs to my psychologist and her reply was that 'that's a tricky one'. Anyway, I ended up phoning the NAS for a list of people able to diagnose privately and I went to the Autism Research Centre in Cambridge. My mother didn't come or fill in any forms though I did ask her a few questions and relayed the answers to ARC via email. I had all of my school reports and the doctor concerned did speak to my boyfriend. I actually went to Cambridge on my own, on a Friday the 13th I remember. Getting a dx was a massive shock but ultimately it has helped my understanding of myself and dd1, and I'm still the same person . It has helped me very slowly but surely pick up the pieces again and cope with dipping in and out of the nt world, which I find still has very little understanding of autism.