Is it worth getting diagnosed? (UK)

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Hello, where to start....

I have always felt a bit different my entire life and struggled in social situations, relationships, etc. This was put down to being difficult, stubborn and naughty as a child. As a teenager and adult I have been labelled as depressed, socially phobic and obsessive compulsive. I've been unemployed for years and recently quit university because I couldn't cope with the people and environment.

Recently, and not for the first time, it was suggested to me I might be asperger / ASD, but this time by a professional. After doing some research and tests online (aspie quiz, AQ, EQ, SQ) there does appear to be a strong indication there. I have many traits, especially interpersonal and sensory issues. I have definitely been depressed and had OCD at some point, but I'm not sure this explains everything. "Being on the spectrum" would explain a lot of things.

My question is, is it worth pursuing a formal diagnosis? I think it might help me understand things but then again it won't change anything and I don't know what help is available specifically for adults with aspergers in the UK. I also believe there are many issues getting diagnosed on the NHS as an adult, so I've found clinical psychologist that specializes in adult assessment, but this really isn't a cheap option and I don't know if it is worth it just to get the 'obvious' confirmed......

It's worth getting an official and objective diagnosis, if only to give yourself legal recourse if you're discriminated against in education, employment, or housing.

Otherwise, if you are satisfied with only a subjective self-diagnosis, why bother to take it any further?

I think it is the definitive nature of a diagnosis from an expert that appeals as it doesn't leave much room for doubt. The more I read about it the more I think "yeah that is me", for example I read about "stimming" and facial grimacing and I do both. But it is possible I am now reading up too much and subconsciously attributing 'normal' behaviors as 'traits' of ASD, if that makes sense?

A diagnosis might allow me to stop trying to fix my issues with medications and therapy too. For example social anxiety should in theory be treatable, where as difficulty with social interaction and eye contact due to being an aspie is never going to be 'fixed' by prozac and CBT.

Then again, you might receive a diagnosis of something other than an ASD. If so, what would you do then?

I'd get the ball rolling while you're working it out ... There are incredibly long waiting lists in some part of the country (up to three years where I am). You can always change your mind and decide you don't want a diagnosis while you're on the waiting list.

that is why I am thinking of going privately. I don't want to wait that long.

Since the Autism Act, all adults should be able to access diagnostic services on the NHS. Mine took about 8 months from seeing the GP through to diagnosis (last Thursday). The longest part was waiting for my appointment with the local general psychiatric service who checked whether I was suitable for referring to the ASC service.

I'd encourage you to see your GP and start the process, and get a rough guide to waiting times. Then if you can't wait, go private.

Best wishes

I've heard about the Act but I wonder if reality might be the typical NHS postcode lottery?

I've already seen a psychiatrist who said in their opinion I have 'many autistic traits' but they can't diagnose me formally. I'm waiting to see if or where they can refer me, because apparently they 'don't have provision for adults' in my area. So by the time I see them again it will be going on 2 months just to see if they can refer me or not.

Privately I can see someone in 3 weeks, for a price.

If impatience were the sole diagnostic criteria I wouldn't need to bother.

Can you tell me a bit more about the diagnostic process? I'm told there is a long interview hours, which sounds quite stressful?

I saw a community psychiatrist, who I spoke to for about an hour. I explained that I thought I might be on the Autistic Spectrum, and he asked about my childhood, interests, difficulties I had, as well as general questions about my mood and to check if I had any suicidal thoughts or psychotic symptoms.

He then referred me to the local ASC diagnostic service (I live in SE London, so this was the South London & Maudsley service, which apparently GPs can refer directly to but for whatever reason my GP went the long way round!) For specialst services you can be referred out of area, so if you can travel, the SLaM clinic might be appropriate.

A few weeks after my referral I got a letter from the ASC service along with some questionnaires to fill out - the AQ, a depression screen, and a long one that covered childhood & adulthood. I sent those back, then a couple of weeks after that got my appointment date.

My appointment was Thursday, and I had a 2-hour talk with a psychiatrist and psychologist. They asked questions that basically made it pretty clear I fulfilled the diagnostic criteria for an ASC.

One thing is, I initially asked my GP to refer me for diagnosis in 2007, but that GP was a bit clueless and referred me for ADHD testing. I still have that report, and that report stated I have several Autistic traits. My recent referral was made after I moved house & GP. The psychs I saw Thursday were able to use information from that report to help their assessment this time round, so if you have a similar report, it might be similar for you, as you also have an older report.

My one thing of caution about going private is, if you need NHS services in the future, sometimes services can be funny about private diagnoses and not accept them.

This is the SLaM info: http://www.national.slam.nhs.uk/service ... ultautism/ I didn't get seen at Bethlem, they also hold clinics at Lewisham Hospital.

Thank you for the detailed reply.

Can I ask how approximately old you are and what made you want to get diagnosed formally?

The long interview does worry me a bit. I will struggle to talk to someone for that long and my mind may go blank, but I assume they will be trained to ask the right questions to get the required information. The childhood areas will be hard because it was difficult and I have blanked a lot out.

The point you make about private diagnostics and NHS services is valid and one of my concerns. The person I have found privately appears to have good qualifications and he does NHS work as well as private, which I think is good sign but not a guarantee. I'm not sure what NHS services I would need or want, I am already being treated for chronic depression and the "services" seem thin on the ground. Unless there is hidden a pool of counselling and support services available specifically for ASD.....

When I asked mentioned asperger to my GP the reply was "it would be unusual to be diagnosed at your age", end of conversation. I will have to mention it again, if the NHS can do it and the waiting list isn't terrible maybe that is the way to go. Alternatively if the NHS list is long I could go privately and then get it confirmed by the NHS if they wont accept a private diagnosis.

Hi UKGuy,

I'm 33.

I initially started thinking I might be on the spectrum when I was about 24. I was reading a magazine article about an Autistic man, and some of the things he described sounded exactly like me, though other things were quite different. At the time I was studying at agriculture college, and was struggling with some of the social aspects of the course (a lot of group work was involved), and generally had never coped well with the non-academic parts of studying. I thought a diagnosis might help both me understand my issues better, and accessing support.

I read up as much as I could, and was pretty confident that I did have Asperger's. I was diagnosed with Dyspraxia a couple of years before this, but this didn't explain all my issues.

So the first time I approached my GP was around this time - but as explained above, this was a partial failure.

I sought diagnosis finally because of problems at work - I want to access ASC specific employment support that exists locally, plus if I ever have issues with depression in the future (I have had depression in the past) I want to be able to see ASC knowledgeable shrinks. CBT and some of the other talking-therapy aspects aren't helpful for me, and a diagnosis means I can be pointed toward the right service in future. Additionally, I am on DLA (I also have physical health issues - lots of joint problems) and when that runs out I want a clear diagnosis backing up the reasons I need certain types of support. Although in theory DLA, and PIP aren't diagnosis-based, it makes it harder to legitimise ones needs without a clear reason for them.

Regarding the long interview, they said I could rest any time, and TBH I think the pressure of the appointment helped because it brought out my stims!

It might help to write out your thoughts around where you fit the criteria, with examples, in advance, so if need be you can just hand that over rather than having to speak.

Hi,

I am a 35 year male living in the South East of the UK. The process was quite similar to other that have posted. I went to see my GP in December of 2013 and then got my Assessment in towards the end of September 2014.

I was sent a few questionnaires to fill out and then went to the assessment, which lasted around 2 hours maybe slightly more.

They do suggest that you take someone with you to the assessment that has known you for your whole life such as a family member or long time friend. I took my mother with me and she gave Howard, the person who did the assessment, lots detailed info that helped with the diagnosis.

After the assessment, I got my report that I can use to help me with various things such as claiming for PIP, or other specific needs and I have explained more about that in this thread.

Why did I want to get tested? I guess I knew I was different but didn;t quite know how so just tried to muddle through but quite a lot of things happened to me all at once in 2012 and that's when I knew something was wrong and luckily it was around about that time when Susan Boyle, the singer, came out as having been diagnosed with ASD.

My parents were coming back from shopping and were listening to radio program about ASD and when they describe the traits my mother told my dad that it sounds just like me. So, that is how I got to be diagnosed. I feel my life makes sense and just feel more complete as a person now.

Regards

Data001

Interestingly there are a few similarities in your situation and mine. I was until recently studying at university and I quit as I was not coping with the non-academic aspects of the course, especially group work and lectures/classrooms. I've been asked a few times over the years if have asperger's as people usually pick up there is something 'wrong', but I never thought much of it; I just explained I was shy and had anxiety.

Recently I started reading up on it and read many people describing their traits and thought "they are just like me!", but on the other hand some things just do not fit, which is why I believe I need to see a professional.

I've also suffered from depression and found CBT and medication unhelpful, with the exception of learning a few social skills and tips from the first therapist I saw in 2004.

I agree with the DLA/PIP it is hard to explain and justify your needs and difficulties when your diagnosis does not really fit your symptoms. I think it was this mismatch that triggered my new doctor, because I have a certain diagnosis but when he started questioning me he said my symptoms do not really fit that diagnosis and maybe I'm ASD.

Over the last few weeks I have been making more and more notes and thoughts to take with me to any assessment. I'm definitely going to keep doing this, although I'm a little concerned I may be only noticing things that suggest a diagnosis rather than things that don't.

It depends on if you feel that it's necessary for you to do so. Are you looking to obtain some assistance as well?

Well, for me, getting diagnosed gave me piece of mind. An explanation for why I was and why I felt the way I did.

As far as doing any good for me, no, I've never gone and done anything about getting 'fixed' for it because I don't suffer from it.

Sure, my ability to socialise is nonexistent but that's not a burden to me. I prefer to live alone. I don't need company!

you guys actually get social services and disability help in the UK so yes, get it.