Adult maybe with Aspergers. How to approach GP?

[fuzzpig]

Reposted from different topic (SEN) not sure if it's the right one but there didn't seem to be a "special needs: adults"? Anyway here it is:

Not sure if this is the right place to post, but after this thread I have decided I definitely need to see the GP as a lot of what I am dealing with seems to fit Aspergers in particular. Could be wrong of course but I need to know either way IYSWIM, as I really can't continue the way I am :(

Have a GP appointment next week, it is a big surgery with frequent locums and the nicest doctor there has left (grrrr) so I have no idea who I'm seeing

I tried the NAS helpline twice today but they are short staffed. Will try again through the week but I am posting here to see if anyone has any advice about adults getting referrals as I have heard it is really difficult.

I have taken the Baron-Cohen AQ test and am starting to get a list of reasons but I don't know what else to do. I'm really nervous, talking about myself to a doctor is a horrible experience for me at the best of times and I am terrified they will not take me seriously and turn me away.

Thanks

Unless it's casuing you severe difficulties in your day-to-day life I doubt you will obtain a referral for assessment for possible Aspergers.

Your symptoms sound more like anxiety to me - the inability to concentrate. People with Aspergers are known for their huge abilities to concentrate and focus on a single task for hours on end. (not all people)

What benefit would having a formal dx bring? Very little I would say, except for confirming what you've recognised yourself.

There are no meds to 'cure' Aspergers. There is CBT but that resource is scarce and not always effective for those with ASD. For anxiety there is medication.

Now you recognise and have diagnosed a reason for feeling the way you do I would have thought the next stage is to develop some strategies yourself to overcome the difficulties.

I seriously don't think a referral would help at all.

It is very limiting on my life yes, that's why I can't handle it anymore. I know 'knowing' wouldn't actually change anything, but I hate not knowing, uncertainty is really problematic for me.

No matter what I hope to come out of the dr appt with some plan for help. In some ways I don't care what it is, though one reply on the other thread said "you have the right to understand who you are" which I totally agree with.

Just sick of being me. My brain hurts

Yes, you do have a right to know who you are but...

It's very difficult to get a formal dx of Aspergers, especially as an adult as there is very little benefit in just having that 'label'.

TBH - it's an academic exercise.

It's the actual difficulties caused by your anxieties that doctors would be able to help with. If they are caused by Aspergers then anxiety will be a permanent feature of your life. So you either recognise and adapt or get medicated for anxiety.

Also, you may feel even worse than you did before by holding out for an Aspergers assessment. You'll wait months, you may find that the person you see has very little expertise in ASD (not all psychiatrists have). The whole exercise would probably increase your anxiety.

Receiving confirmation of something you've already worked out for yourself is not going to provide a miralculous turnaround.

Sorry - not trying to be harsh. Hope it goes well for you.

I'm afraid I agree with Wet. I think if I had any faith in the system I might have a different view, but adult dx is rare and specialism is rare and afaik the guidelines state that dx are only to be given if it will benefit the patient and just knowing who you are is not enough. Also by adulthood any ASD will be mixed up with life experiences and other things that it may just be impossible to separate it from.

The best you can do is list your symptoms and try to get help for them.

Sorry. I realise it is a very unhelpful post but the truth is that the NHS is very unhelpful with these kind of things.

Oh I see. That makes more sense now (yes I did feel you were 'harsh' before but that is down to me not you IYSWIM sorry :()

I guess I also want to know because I want to be able to explain to people why I am so different. I can't just say to my manager (eg) "hey, I have suchandsuch" because I would feel like a fraud if nobody had officially said so, if that makes sense.

I just want somebody to agree I'm not a horrible person and it's not my fault I am so crap at being anywhere near other people.

I will find out about medicating for anxiety - anything I can do I will! How does it work? I've had lots of different ADs over 11 years but none have made an impact, I may have had more seratonin or whatever but my behaviour didn't change. CBT was useful but more geared towards stopping me self harming, we didn't get onto dealing with other people as for most of those 3 years I was sitting in my room.

Star, I knew diagnosis was hard (for children too) but I didn't know it was quite that bad for adults. The website was a little more optimistic. :(

There is nothing wrong with you insisting that you have ASD when you visit the GP and others for help with symptoms. If they question it you insist that until you are referred and proved wrong you believe it is the most likely explanation/fit.

Hi fuzz glad you found us.

I think and maybe others will agree that you might just have to accept that you have tendecies towards Apsergers/ ASD and live your life accordingly.

As others have said it is very hard to get a DX as an adult, although it can be done with sympathetic proffs.

Often people question themselves after they have had a child diagnosed.

I have done a lot of reading and soul searching over the last 4 years since trying to get support for my Dd3 and I have come to the conclusion that I [along with quite a few other members of my family] am probably on the autistic spectrum

Would getting a diagnosis help me, probably not. But what does help me is accepting myself for who I am and understanding that I have limitations especially in social or preasurised[sp] situations.

As I said on your other thread, I would recommend reading some Tony Attwood and be kind to yourself. I have learned to say "Yep, I am crap at that but that is who I am take me or leave me, what I am good at I am good at."

Good luck

Thank you. I guess a lot of people have to do that.

I will keep my appt for Tuesday (might ask to change doctor though... None of them are that great but better the devil you know and all that ) and just go and say I need help

Stupid thing is with a really logical mind I feel like I should be able to think my way out of this.

It's crazy, nothing has changed whatsoever so why am I sobbing away like my world has ended, it's pathetic

there's some general guidance on the NHS choices page re:adult diagnosis, seems to mostly be lifted from NAS site:-

[http://www.nhs.uk/Livewell/Autism/Pages/Diagnosisinadults.aspx]

If you do get the diagnosis, think long and hard about whether to disclose to employers etc. I think I may have spoken to you on the other thread, my position is similar to Ineedalife - that I didn't feel I needed a formal diagnosis, or want to add to my existing collection of mental health labels(!), but I think some people need a formal diagnosis to be "kind" to themselves. Btw I have a friend who got an adult AS diagnosis, and he did find it helpful, just having the DX even though he didnt intend to seek any support/adult services etc. I do agree with the other posters though about not having great expectations of any services even if you do get the DX.

Thanks I'll have a look, have calmed down a bit for now

I think the main thing is that I don't let the GP say it's depression, I obviously have a lot of history with it on my medical notes (including hospitalisation) but a lot of the depression is because I hate myself so much for being so abnormal, because I am so useless with people (as I said on other thread it has come to light since I got a job and have to be around colleagues all day, before that I could get away with isolating myself) and because my brain is in constant overdrive repeating everything and going over lists and plans and dialogues in my head. I've only recently realised that it's those things causing me to be depressed, I'd always thought it was the other way round.

You might want to pay for a dyslexia test also.

I think dyslexia is one thing I am sure I don't have :) language is a very strong point of mine unless it involves communicating with someone else

Unless you mean the bit I wrote (on other thread) about not understanding books etc - as in I can read the words brilliantly but often can't understand them all together.

Kind of like all those threads on the education boards where people talk about early readers, and everyone replies "ah yes, but can they understand what they're reading..." that would be me I guess, reading fluently age 2 but still can't follow a story. But that isn't dyslexia is it?

My dad was dx with severe dyslexia but he coukd read fine. He had to read over and over though to 'get' the point. His main dyslexia symptoms were organisation and planning. On the surface he appeared super organised because the number of lists and diagrams he would make but they were developed coping strategies.

Sounds more like hyperlexia to me fuzz. Google it, it is quite interesting and related to ASD

I have to read things over and over again before i remember them. I always re read a book as soon as i finish and there are many parts i have no recollection of reading.

I have no trouble with spelling and am intelligent but did really badly at school.

It has taken me years to have the confidence to get any qualifications.

My girls are similar but I have made sure that they get the right kind of support at school.

I have learned to stand up for my girls especially Dd3, it has been a long road but I am fairly happy in my skin now.

I hope you can get some support and learn to be kind to yourself.

YY to reading over and over. Although that is because I get to the end of a paragraph and realise I hadn't paid attention to it, it's like my mind is split in half and one part reads each word (including out loud like bedtime stories) and the other is thinking about something completely different.

Thelightpassenger any chance you can repost that link please, it didn't work on my phone.

Hyperlexia made a surprising amount of sense Ineedalife

Keeping coming on here fuzz, I have had so much support on here and any question you care to ask someone will always have an answer.

Am off to bed to re read my latest book.

Will check your thread again tomorrow.

www.nhs.uk/Livewell/Autism/Pages/Diagnosisinadults.aspx Does that work, fuzzpig?

fuzzpig

It is worth getting a diagnosis of the real issues, when i was daignosed as having APD at the age of 49 so many other issues where also highlighted, which I had not even been aware of previously.
Dyslexia is about having problems with reading writing and spelling, issues of self organisation are related the to the cognitive subtype issues that can cause the dyslexic symptom and or running the compensating coping strategies in the working memory.
"reading fluently age 2 but still can't follow a story. But that isn't dyslexia is it? "
you are quite correct that is Hyperlexia which tends to be associated with those who have ASD issues

There are a great many issues which have become recognised or defined as specific issues over the last decade or so which would have been ignored when we were younger or at school. And having adults diagnosed is important as it provides a better evidence database, for those who have some understanding of how to cope with these types of issues, and also it helps our children not feel so isolated as being the only one who have a diagnosis. It also helps bring down the awareness barriers of ignorance which some prefer to hide behind.

Thank you that link worked :) I was surprised it mentioned that people can be happy with self diagnosis - wouldn't the NHS want to avoid that? I guess I envisage health professionals/family/colleagues giving me the face if they found out a diagnosis wasn't official.

Had a look at APD also, but it didn't make all that much sense I did notice that it involves not discriminating between sounds etc. I think my 'hearing' problem OTOH is more like my reading problem in that I can hear/understand each word, but put them all together and it's like WTF! I can parrot back to people, or follow short instructions - my colleagues were astounded how quickly I learned lots of library tasks, passwords etc, but I guess some of it was more visual as I find that easier. Conversation is really difficult and I always feel like I'm not really in it, I just bluff my way through and attempt to work out when I'm supposed to speak (I fail at that frequently and interrupt). Lectures were awful because I couldn't follow what they were saying. Lecture notes weren't much help as I couldn't relate the summaries back to what had been said.

I don't know if a doctor would believe any of that though because I was a very high achiever throughout school/college. Maths in particular was frustratingly easy.

Fuzzpig I can identify with what you are feeling, as when my son was diagnosed with ASD at 9 I began to realise his view of the world was much the same as mine...ergo did I have ASD too? I had had difficulties with social skills and I go on and on about things a mixture of tactlessness, shyness and Never Stops Talking syndrome. Teens were basically hell. Uni went sadly pearshaped. Adult life not without its challenges. I have friends though, slowly but surely. I learnt the importance of caring for others is the key to making contact. Even if you just ask someone how they are, and listen to them the rest will follow even if you never catch up. You make your own place in the world.

However, I have found people who valued me for some of my other talents. I am kind, thoughtful. I am clever. I am funny [sometimes] I make connections very fast and look at things from a different angle. I am extremely loving when I am close to people (once I've broken the communication barrier). I am very interested in lots of things, and my life is richer for my intense interests (whether I can communicate them to others or not)

Sometimes I've felt so alone I wanted to curl up and hide, and the worst was the impossibility of communicating how odd I felt to anyone. But I suspect one of the ASD qualities is that we stick at things, and often we stick at living and we are brave!

Meanwhile a lot of the anxieties I have recently experienced turned out to have a reasonable chemical explanation, thryoid deficiencies. So please make sure that Doctor does a proper investigation of some of the physical reasons you might be feeling so low and anxious (blood test for TSH for example, B12, iron, Vitamin D) before you blame your whole personality.

In fact having an ASD child has made me love and value myself a lot more, if he is lovable then so am I. Go easy on yourself, and just take each day little by little and don't judge yourself by others' standards.

PS. I am tentatively looking at CBT and a diagnosis of ASD for my own peace of mind, although the effect of thyroxine may be that I don't need to see ASD as weight on my mind but the freedom to be the way I am.

Maudsley hospital london have a specialist adult clinic for Autism. I've now met several patients as my lil sis works there and I am VERY impressed at the therapy options for helping with stuff like asd related depression and anxiety. The CBT they do has especially impressed me just having met a few people "before" and "after" iykwim on a casual basis.

So I'd say an adult diagnosis is worth getting if it means you can get the sort of specialised help they offer. Sadly whether this clinic is available to you does depend on where you live, but if you ring them they'll know of similar clinics elsewhere in the country.