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

The other thing is YOU NEED TO BE KIND TO YOURSELF because your children are going to be affected by the way you feel about yourself. And the happier you feel about yourself, and the more you value yourself, even if it is jsut in lttle ways I AM DOING A GOOD JOB being a mother and a partner to my husband in these little little ways (write them down if necessary) the less anxious you will feel, and the more they will blossom. Your children will by default love you, however you are, take that as magical charm to wear against all the doubts and fears. So what if you don't do some things right, not everyone can get everything about parenting right. If there are things you find very difficult, try to look at them from a different angle. No I'm never goign to be able to do that, but I could do that instead...or I have done that instead.

Maudsley would be doable I guess. I was at their 'partner' hospital, Bethlem Royal, for 6 months.

Ensure it's only the specialist autism clinic you see - they are the specialists .

Thanks, the NAS advisor I just spoke to is sending me details of the 2 specialist centres within 25 miles of me. She is also sending some info to take to the GP.

I forgot (aaaargh) to ask the advisor about the hyperlexia thing.

Should I mention that to the GP? Or will they just laugh? I didn't even know it existed until very recently, it's not that well known I don't think...

what lovely posts swanthingafteranother.

The best thing about the Internet is that people like you with a lot to offer can freely communicate such great and supportive points to a lot of people, whereas in real life you might feel too shy, too tactless or too prey to "never stops talking syndrome" (must remember those as I have exactly the same trio myself).

I think that's why I love MN so much lingle! Talking in RL is so so hard (for the same reasons as you) and here it is easy.

Even if I do agonise over the words and sentence structure I use and often read it several times before and after posting

Hi Fuzzpig, I am pretty much in the same boat as you, but as my son is currently undergoing assessment for ASD, so I'm wondering if that will help me to get a diagnosis.

I always thought I had ADHD (major concentration issues too) Unless it's something I'm interested in, in which case you'd better not disturb me, or I may get violent

I stupidly didn't realise girls could have aspergers (most of the on-line information seems to relate to men)

I also have a crippling social phobia (which I believe has stemmed from being forced to socialise at school).

by the way, my son's EP (who also thought I might be on the spectrum) said we make great parents (so, it's not all bad). I guess our unemotional, logical style of parenting breeds secure children

I have now compiled my list. The advisor said it was important to look at the triad of impairment on the website.

So I have categorised my list according to the subheadings

They're going to hate me at the doctors aren't they :(

fuzz - just a word of warning - I really had to keep tight control of myself at the GP and not talk too much and too jargony (having already acquainted myself with tmi on thesubject). It was a very emotive subject, so my advice is to say much less than you think. I found Gp did listen to me, and take on board what I said, and agreed to refer me for a pyschological assessment as a result. Which I have yet to organise due to the thryoid issues...but I have found someone to do it. What is interesting is that she immediately said (pyschologist on phone) Why Do You Want This Assessment? What Purpose? Which shows that as an adult it can just be a question of knowing for one's own peace of mind, not necessarily that any practical help can come of it from the medical services.

fuzzpig

Auditory Processing Disorder is a listening disability, about having problems processing what you hear, all sound based information which includes speech, which is a sound based communication system. so having problems discriminating sounds is a technical way of describing our issues which includes having problems discriminating the sounds of speech.
So those who have APD as you describe have problems with conversations, following multiple verbal, not visual, instructions, and processing the meaning of what we hear.
Those of us who have a high IQ are very good a developing alternative compensating abilities, which can lead to us becoming comparative high achievers, but never reaching our true potential.

Having reading problems is also known as dyslexia, dyslexia is about having problems with a man made communication system the visual notation of speech, or decoding and recoding the graphic symbols society has chosen to represent the sounds of speech. (so those who have APD have problems processing speech, and therefore will have problems processing any form of notation of speech.
There are three cognitive subtypes of dyslexia: auditory, visual, and attentional. Which means that an auditory processing disorder, a visual processing disorder, attention disorder or any combination of the three can cause a reading problem or the dyslexic symptom. So each dyslexic has to identify which underlying cognitive disability causes their dyslexic symptom. And dyslexia is another spectrum just like ASD, and they both share the same underlying cognitive issues, except that ASD may have a wider range of underlying cognitive issues.

Thank you. Good point on the jargon. I don't want to tell the GP how to do their job (though by many accounts a lot of them don't have a clue about these disorders anyway...)

I like the idea of starting by saying less, I will still take the list with me as the advisor said it was important to have 'evidence', but won't bring it all out unless I need to.

Dolfrog really sorry I don't really understand what you mean about dyslexia and apd, or at least how it relates to me/my symptoms. Any chance you could give me the gist please

fuzzpig
you wrote this
"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"
Which is a good description of APD, and APD is a cause of dyslexia, which would explain your reading issues you mention.
And those who have very severe form of APD are not able to multi - task when talking, typing, etc and while performing these tasks can appear to be Asbergerish, as they are not able to process how others are responding to what they are saying, typing, but once they hgave stopped talking, typing, their abilities process the reactions of others returns. This is a working memory issue. The amount of working memory required for those who have APD to successfully work around their problems when talking our using sound based communication means that to prevent working memory overload all other task have to be put on hold until they no longer need to access and use those working memory sapping coping strategies.

And some who only have APD can sometimes be miss diagnosed as having Aspergers Syndrome. It was only because we avoided making this diagnostic error with our eldest son that we first heard about APD in 1998, and have since discovered that all our family have APD. It is all very complex, but you do need to understand the various diagnostic options, and not just the limited number of options discussed on forums like this one.

Thanks that does make a bit more sense. I have been googling (possibly a bad idea...) but I don't find the info on APD as easy to follow as the info on ASDs. Will keep trying.

Had a long email back from my tutor, very understanding and helpful, she's already spoken to her advisor to see what help may be available to me in the meantime.

fuzzpig

unfortunately google finds the most popular or well marketed information which may not always be the best informed information.
You could have a look at these links
CiteULike
Audiology and Auditory Processing Disorder library
Autism library
and possibly some of my own Diigo links lists
My List: Auditory Processing Disorder (APD)
My List: UK APD
My List: APDUK
My List: Autism ASD

Wikipedia can also be a source of information and provide links to support research references
Wikipedia Auditory processing disorder article
Wikipedia Dyslexia article
Wikipedia Autism article

I hope this helps you find the explanations you are looking for.

Oh god I really didn't have a clue on any of those research papers. I just can't do it :( all those pages of links and names, I've never been able to cope with that.

Which is shit as I will have to do a literature review at the end of my OU course this year. Fuck. :(

Even google is a bit of a nightmare, I usually just click on the first link. Some lucky clicking got me to a leaflet PDF which was good, and an article more aimed at a layperson. So thank you for posting the links, I really don't mean to sound so ungrateful for them, I just find that kind of thing really hard to access

fuzzpig

I know exactly what you mean, this is what most adult dyslexics experience, and auditory processing disorder is the underlying cause of my dyslexic symptom.
The problem for me is that the information is not presented or formatted to match my communication needs. My own preferred format for text can be seen on the APDUK web site, multi -coloured text, which for me provides a visual guide changes in the text content. Unfortunately not many information providers are aware of the communication needs of those who have APD. So for long posts on forums, long paragraphs in emails or research papers etc, I have to copy and paste them to a word processor and then change the formatting of the font, and add extra spacing, to make the text more me friendly.

Today I actually managed to tell a senior colleague what is going on (vaguely) - she will tell my line manager for me. Am now not in for a week but have to go to a hen party tomorrow (scary enough I'm her bridesmaid too) I am really dreading it - a night in a cottage with lots of new people - but hopefully it'll distract me a bit. I really really wish I could just not go.

FUCK FUCK FUCK.
Just got the (overall very good) info pack from the NAS, complete with 2 specialist clinics from the database as promised. Problem is, one of them (possibly related to the Maudsley one mentioned earlier, as it's a partner hospital) is actually located in the hospital I spent 6 months in, it was a horrific time (self harmers were treated like shit). :( All that time asking for help there, not sure how it would be if I had to go back. It's really spooked me to read that.

OTOH, hen party was good, just in a cottage with a few people just as geeky as me (I should've realised that really) with plenty of space to retreat into when it got a bit overwhelming.

fuzzpig and swanthingafteranother

to some extent you are both talking about Auditory Processing Disorder, and related issues.
Those who have APD have a problem processing what they hear which includes the meaning of all they hear and that includes the speech of others. Some who have APD are vary good at developing coping strategies to work around their communication problems, some even get to University, and some at university students even potential medical doctors who have a new APD diagnosis are asking for extra time during the lat year exams.
APD is one of the underlying cognitive issues that cause the communication problems which can be part of the multiple complex ASD issues. And many who only have APD have in years gone bye been miss diagnosed as having ASD, and Aspergers Syndrome in particular. Mainly due to the ignosrance of the professional providing the diagnosis, as most are not trained to assess and diagnose APD or worst still they are not aware that APD even exists, as it is outside of their basic training.

Those who have similar issues as fuzzpig has described will understand others similar to themselves, as this is how my DW and i came to together over 35 years ago, we have a mutual empathy, but we can not express this using words and in text, as that is part of our mutual disability.

According to the UK Medical Research Council up to10% of the population has some degree of APD, and since APD was only officially recognised in the UK in 2004, that means that there are generations of adults who have APD but have no idea waht APD is let alone that they may have this disability. So in the UK there are approximately 6 million APDs of which only a handful know about APD and even less have a clinical diagnosis, of APD.
Some may have a miss diagnosis or a diagnosis of a symptom of APD or other related issues.

Is it possible to have both do you think?

I can see how the communication part of the problems are easily confused with APD and I know that has been a focus of this thread but TBH they are only a small part of the overall fucked up picture

fuzzpig
Aspergers and ASD issues are diagnosed based on observed behaviour traits, and not the underlying cognitive issues which can trigger the observed behaviours.
APD is a set of cognitive issues related to the processing of sound based stimuli which includes sound based communication or speech. And as such is one of the multiple complex mix cognitive issues which can trigger ASD related issues including Aspergers syndrome. International research is still trying to unpick the underlying cognitive issues that can trigger ASD, and many consider that there may be more than a single combination of issues which eventually may be called various autisms in future.
So currently identifying whether you have one or more possible issues which could trigger the traits for an ASD diagnosis is important, as some may only have a single rather than multiple issues, and those who only have single issues, such as APD, rightly will not qualify for an ASD diagnosis.

Well I've got my list of behaviours and some info aimed at GPs, so we will see how the appt goes.

Terrified, really terrified. :(

From a logical standpoint, being seen at the scary 'old' hospital would probably help get a correct diagnosis if you have asd. Because presumably the previous episode of poor health was a complication of the asd or a misdiagnosis of symptoms that, in 2012, are understood to fit with asd.

Obviously won't stop you feeling awful about setting foot there again though, so if you opt for the other site you may want to a) make sure the team is just as expert and b) consider getting them to review a copy of your old notes.