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How do you get a diagnosis of Aspergers or not for an adult? Not sure how to tackle this.

(25 Posts)
WideWebWitch Thu 03-Mar-05 12:33:00

Hi there, I hope someone can help. My family are wondering whether my stepfather is Aspergic. My sister has thought so for a long time and knows something about the subject as she teaches an autistic boy using Lovaas (sp?) technique. A while ago she gave my mother a book called, I think, An Aspergic Marriage. My mum dismissed it at first but has just begun to accept that maybe her husband, our stepfather, does have aspergers. If this is the case it would explain an awful lot, it really would but a) how can she get a diagnosis? b) How can she possibly bring it up with him? c) what difference would it make? Other than we would understand him rather than finding his behaviour unfathomable. d) is there a checklist anywhere? would he have to display all of certain characteristics of just some? I don't know enough about this but I'd really appreciate any advice anyone can give me about how my mum (and I) can tackle this. TIA.

MrsFROSTgetful Thu 03-Mar-05 12:35:46

I will watch this with interest as i think me,my DH,my dad,his dad,my brother etc are ASD....Asperger's particularily....but only I want a true diagnosis...i am labeled 'depressed,anxious,obsessive'

WideWebWitch Thu 03-Mar-05 14:34:55

hopeful bump

coppertop Thu 03-Mar-05 14:45:54

I think it can be very difficult to get a dx as an adult, which is why a lot of people don't bother. IIRC there is a place in Cambridge somewhere that might be able to help but I can't for the life of me remember the name. I've got to collect ds1 from school in a minute but you could try gooogling for Cambridge and Simon Baron-Cohen.

There aren't many benefits in having an official dx unless you're looking to claim something like DLA. There aren't an awful lot of resources for children and teenagers, and even fewer for adults.

The National Autistic Society's website will probably have a checklist. No 2 Aspies are the same so not everyone will fit all of the characteristics IYSWIM.

Sorry this is such a rushed reply.

mummytosteven Thu 03-Mar-05 15:09:19

gosh Mrs Frostgetful, i know the feeling! I am interested too - I am definitely OCD/depressive - but certainly never near the fringes of mild Aspergers if not quite on the spectrum (could only pin the psych I saw for my OCD down to saying "it had crossed his mind" and that "I had some Aspergers traits"


I agree with CT that Cambridge would be the best place to get a diagnosis:- the Uni's autism research centre has an Adult Aspergers' service called CLASS.
link to the Cambridge place that CT referred to is: http://www.autismresearchcentre.com/arc/default.asp

and page specifically on aspergers:-http://www.autismresearchcentre.com/clinical/class.asp

I don't think you can get an NHS referral to the Cambridge Lifespan Aspergers Assessment Service unless you live in the county.

agree with other posters that the benefit of an official diagnosis is questionable as their is so little out their for aspie adults. some of the self help material on the web/self help books may be of interest if your Stepdad has difficulties with understanding language very literally - eg. some self help books may have an explanation of the sort of metaphorical phrases people with ASD tend to find difficult to understand.

WideWebWitch Thu 03-Mar-05 15:13:17

Thank you very much. We want to know if he does have it because it would explain so much. He is very likely to say he doesn't so I suppose we want to point in the direction of somewhere impartial. Thanks for that about no 2 being the same, I thought that might be the case and would therefore render a lot of checklists irrelevant. He cannot handle any change to routine, at all, is socially awkward, doesn't empathise, doesn't read other people or situations, is perfectionist abut the positions of eg household objects, can't do spontaneity and there's more but no time. Any other advice appreciated too. Thank you.

Fennel Thu 03-Mar-05 15:39:02

there is a recent thread on special needs about having an adult relative who's aspergic. it includes some websites which deal with this. some of them have checklists.

I do remember one which said that it's very difficult to get aspergic adults to accept such a diagnosis. and as you say what difference is it going to make to him? It might help your mum more.

I am convinced my father and brother have AS - quite a few people who know them feel the same but we haven't brought it up with them as I can't see what benefit it would have. It was helpful for me and my sister to realise why they were so odd though.

MrsFROSTgetful Fri 04-Mar-05 09:34:43

I think the key point here is that (if i am right- and i have AS/ADHD )... that all my life i felt 'different' and for a good deal of my late teenage/adult life I stuck to the 'self-learned' strategies that worked .... i grew up hating my parents (for not understanding me.... and struggled [but his anxiety] in the work place)

So as a child school reports said:
Talkative- but often at inapropriate times (AKA never knowing when to be quiet)
motor-driven
a fidget
Disorganised.
Intelligent
Needs to apply herself more to the task in hand & concentrate better
Messy handwriting
great at sorting the pencils/library books
talented at drawing
needs help with 9what were called) friendship skills....?what i call 'social skills now?)
daydreamer
Clumsy
sulky
passionate about one activity at a time- hard to move on to another- and then over passionate about that too
etc.....

Then as an adult ....in addition
I often end up but of someones jokes-still have to analyse things i hear as i 'take things to heart or the wrong way....LITERAL???)
Gullible
disorganised
anxious
obsessive
will tell anyone anything- and often appear over friendly/abrupt - happy or sad at the wrong time to the wrong person.
at work i would exhaaust everyone around me- and was either loved or hated for my scatty eccentric 'crazy' behaviuor
few 'real' friends

and the best one 4 me is how i would tell people that i felt i was from a different planet(inside a goldfish bowl)- looking out into 'your world'....and was happy....it was everyone else who didn't understand ME that were the problem.

So the list goes on..... my point being....I was always this way...i was always aware of it....and it often distressed me.

then i had the boys and this put demands on my time that i used to devote to the 'coping stategies ' i hada developed ...nor time to be 'obssessive' about my 'special interests etc'

so that i believe is how i became noticably depressed etc- not the boys fault- but that of if i had maybe remained 'alone' then i would have been able to devote all my time to all my needs.

but the turning point for me was when at age 6 Tom (ds1) was starting to remind me of ME at that age- and the teachers where describing him on his reports as my teachers had done years ago...then they mentioned ADHD...and later ASD...so my huge Learning Curve began.

As i read more and more it was like a huge weight had been lifted....i realised why life was a struggle....and began to try applying the strategies suggested to myself.....

This is where it is different if YOU yourself actually
1) feel 'different'
2) identify with someone else affected by ASD
3)read/watch programmes and feel it is your lofe that is described

rather than if you are the 'onlooker' noticing the struggles/odd behaviours of another.

My dad & brother are great examples.... you never here them saying "why me" "why am I like this"....they totally see they are right and we are wrong.....and for me 'luckily' having children made me realise that i had a problem.... i believe this is due to the 'naturally' difference between men and women with regard to intuition and insight...

which finally leads me to the fact that more males are diagnosed- i believe not because more have 'IT'....but because apparently it is scientifically proven that females are more socialable/intuitive and have better empathy already 'built in' ....and that even if they are Autistic... their 'baseline' of these 'skills' is natuarry higher....so makes them able to 'disgise ...albeit unkowingly' their DIFFICULTIES.

WideWebWitch Fri 04-Mar-05 10:28:18

Thanks Mrsfrostgetful, that's really interesting.

MrsFROSTgetful Fri 04-Mar-05 10:33:42

and long..........!

WideWebWitch Fri 04-Mar-05 10:34:49

I did think as I typed it, 'really interesting' doesn't sound enough when you've told me so much but I just couldn't think of what else to say! It was useful and I'm grateful to you for posting your experience, thank you

MrsFROSTgetful Fri 04-Mar-05 10:42:36

thats ok...i suppose MN is wher i can 'download' what goes on in my head...i hope it helps someone else when they read it...i REALLY did feel so 'different' till i came across a website (now cannot access it !) called THE MESSY HOMEMAKER....she posted loads of her own real life stories about being an adult with ADHD.... it was inspring to me.
WWW- any more info you need specifically about something ....i'm sure i have experienced THAT too!!!!

Pinotmum Fri 04-Mar-05 10:44:21

MrsF, your posting is fascinating. I am now convinced that one school friend of mine (still in contact now and referred to as eccentric) and on ex-partner were aspergic. I will watch this thread with interest.

MrsFROSTgetful Fri 04-Mar-05 10:54:28

BUt don't forget.... this is only my opinion about myself!!!
(though the people i see ref my 'mental health' are begining to focus on the behaviours that i have described here...the psychiatrist has changed my medication....and the psychologist says that it may be useful if with support from them that i try a peiod with NO medication- so that 'the real me ' is observed....this makes sense as commonly AS adults are treated with antidepressants etc....when infact depression is 'only' part of the puzzle.

something i KNOW i do on here out of habbit which i am conscious of doing as i tyoe- is i am forever using 'inverted commas' to make sure i don't upset- or offend- or mislead- or so on....this i feel stems from the fact that as i grew up i had a very literall understanding...and so when i type i 'MUST make it EXTRA clear with CAPITALS or 'inverted commas' what i mean to say!!!!

ScummyMummy Fri 04-Mar-05 11:39:43

Hmm. How do you think your stepdad would respond to this thought, www? Would it be something that helped his conception of himself, helped things slot into place for him? Or would he be distressed that people thought he had "a problem"? Is his behaviour a problem in some ways, affecting others in the vicinity- like your mum and you guys, maybe?- in ways that need addressing? Or is he happily eccentric in mostly positive or unimportant ways? I think that, as Freckle says, it's quite important to have a think about what, if anything, would be gained by talking to him about seeking a diagnosis. I have a very close family member who I could very easily look at through an "aspergers lens". He's an odd bod, massively intelligent, very shy, very few friends, clumsy, has difficulty with facial expressions and unstructured conversations, has deep interests which he can chat about for hours without realising that you may be bored, can really put his foot in it on occasion by misjudging social situations and saying the wrong thing. He likes rigid routines at the best of times and becomes pretty much wedded inseparably to them at stressful times. But he's also overwhelmingly a contented man, a well meaning man, a very sweet, loveable man, a man who can function just fine in life, though he does it in his own way, which is often quirkily fab and original. I just can't see how diagnosis would help him and think he would just be perturbed and upset if a family member brought the subject up, perhaps thinking that we perceived his very essense as a "problem". In fact, we value his bizarreness in many ways, so that would be the last thing we wanted him to think! That's very different from how MrsFrostgetful feels, if I am reading her insightful posts rightly. She feels that viewing herself through the filter of an Aspergers/ADHD diagnosis provides crucial and longed for explanations of why some things in her life have been so hard and point to ways of managing in the future. Where do you think your stepdad would fit in to this? Sigh of relief at finally having a reason for things he's long wondered about? Or utter horror that his family thinks there's something wrong? Bit of both? I think that's one starting point, anyway.

WideWebWitch Fri 04-Mar-05 12:22:15

Thanks Scummy. I don't know how he'd respond tbh and it would be very difficult for my mum. But it's at absolute crisis point in our family. He and I aren't speaking after a particularly awful recent confrontation and there have been many since he married my mum, when I was 8. So that's 30 years and I've decided it cannot go on. You're right though, it probably wouldn't help him but if he is as it might help me sympathise rather than demonise him. I've just spoken to my mum and she thinks it might be worth talking to his brother about how to tackle it.

MrsFROSTgetful Fri 04-Mar-05 13:38:44

i think it all hinges on whether he has ever indicated that he feels different or odd... like my dad and brother haven't- and are the hardest to talk to about how my kids symptoms of AS present...i assume they are 'so wrapped upin their world' that they cannot see any differnt perspective.
For me it's a case of the more i read -the more i learn -the clearer it all seems.

i was watching my 'autism video' today (full of programmes about autism that i have taped over the past 2 years or so) There is a man featured on the programme "The Autism Puzzle" who says something like
"Isometimes feel that i don't like being near other people- that i'd rather be alone- but it's not that...it's that.... I want everyone to do what i want - and this sounds like i am an autocrat- but it's really that if they don't want to join me then that's ok...I'll get on and do it alone anyway"...this to me sums it up for me as an adult...I LOVE being with other people...but only when i'm doing what i want....and i'm therefore totally happy alone -it that means i can do my things!!!

elliott Tue 16-Dec-08 11:25:33

Have been trawling through past threads to try to get some further info on wehther my dad might have some autistic/aspergers traits, and this one seems to press the most buttons (in fact having read mrsforgetful's comments I'm now wondering whether I'm the one with asperger's...)
I think my dad sounds closest to scummymummy's description of her relative - he is quite contented and can be sweet, in a rather unworldly way. He would definitely have absolutely no insight or appreciation of ways in which he behaves that are not like other people. So I'm not looking to change him, just trying to understand why he might have behaved in certain ways in the past.

twinklingtrace2 Tue 16-Dec-08 16:00:52

when ds was dx the pead said dh could be tested at sheffield as there was a doctor there who does this for adults

Marne Tue 16-Dec-08 17:00:11

Would a dx realy make any differance?

I think half my family has AS, my dad is very aspergic but i couldn't see him doing anything about it. I also show as traits as does dh (more so), Dd1 has a AS dx, dd2 is being asessed for ASD.

Since learning more about AS/ASD i think i see alot of traits in other people including family members, dd1's friends and people i hardly know.

amber32002 Tue 16-Dec-08 19:43:26

As I posted on the other thread about this, go to a search engine and put in "AQ test". It should take people to a 50-question test on the sort of things that a psychologist looks for in people who like me are on the autistic spectrum, though it is not a diagnosis. A score above 32 is interesting for a psychologist. But the questions don't include the sensory stuff yet as the scientists are still learning about us (wish they'd work faster...). Typical is not being able to cope at parties or hear against background noise, or finding clothing tight or scratchy, having little fashion sense, not coping with a lot of eye contact, not coping with strong smells, moving away from flickering lights, finding some foods really alarming. And being a very light sleeper unless under something quite heavy. It varies from person to person, though.

MaryBeWaiting Tue 16-Dec-08 19:51:14

Am unwell, so am not going to write a long post...

I was diagnosed in September. I'm fortunate there is a centre of expertise near me, specialising in the diagnosis of adults. I went to my GP and was referred under the NHS.

I feel SO much better for knowing. I was fine when I was in "blissful ignorance" but once I realised the truth about myself, I felt I needed the diagnosis to confirm it. It also stops people saying "How do you know if you haven't been diagnosed?". That was SO SO infuriating!

Whereabouts in the country are you?

elliott Wed 17-Dec-08 09:39:23

Thanks for your replies. I don't really think anyone in my family needs a diagnosis, its more that I want to find out a bit more to try to understand whether my father (and perhaps brother) are likely to have aspergers, and so to better understand them.
I only got 22 on the AQ test (last time I did something similar - not the same one I don't think - I was much higher scoring!)

AvisH Wed 21-Jan-09 10:52:06

My son (20) almost certainly has Asperger's and needs a diagnosis.

We are in Milton Keynes and the local PCT don't know where to send him -- we are going to suggest the clinic at Cambridge, but their web site at http://www.autismresearchcentre.com/clinical/class.asp
says they don't take referrals from GPs out of their region.

Does anyone else know of anywhere we can go?

Also, what are our rights to go to Cambridge?

AvisH

amber32002 Wed 21-Jan-09 11:05:34

Hi AvisH, there's no right to send him to a Cambridge consultant as far as I know, unless you want to pay privately (expect a bill between £500 and £1000 if so) but the National Autistic Society holds a list of all people who can offer a diagnosis, so it's worth looking for that information on their website or ringing their helpline?

www.nas.org.uk

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