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Support thread - adults on the Autistic Spectrum :)

717 replies

fuzzpig · 16/03/2012 08:41

Hello!

I've seen a lot of MNers mention being on the Spectrum, whether diagnosed or not. I thought we could use a long-running place to chat, share coping strategies and basically to know there are other people like ourselves, who won't judge us for being different.

I'm new to all this myself - only realised there was a possible name for How I Am a couple of weeks ago (thanks to MN)! Now I have a referral to an adult ASD specialist, to see if I have Aspergers. It's all happened very quickly.

Enough waffle from me (for now anyway...) but I hope other people will come along and find this thread useful. :)

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Kladdkaka · 19/08/2012 19:31

I love them. I hug them too me until they go back to normal :(

Kladdkaka · 19/08/2012 19:31

The bath oil one (Balnium Bath or something like that) was beyond freaky. It's like suncream in disguise.

fuzzpig · 19/08/2012 21:02

Love what? Not the dishwasher crockery?!? :o

Sun cream I don't mind, fine with moisturiser etc, just HATE the feeling of dry hands. Unfortunately I also hate the way my fingers feel when touching newspapers. A problem as part of my job involves processing newspapers every day. Getting used to it though (and getting through even more Norwegian Formula hand cream!) Thankfully due to the newsprint coming off I have an excuse to wash my hands a lot.

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TheLightPassenger · 20/08/2012 20:13

don't have much sensory stuff - just sensitive to sounds, kids shouting, drilling, burglar alarms etc. and also to any sudden movements when in a car - though once managed to prevent an accident as my shocked noise alerted my friend to someone else's bad driving. in this hot and humid summer, am craving v loose clothes, anyone else?

Kladdkaka · 20/08/2012 22:49

I live in Sweden, I've been craving socks and a warm jumper this summer :o

fuzzpig · 20/08/2012 23:25

:o

I'm not so bad with sudden noises unless they are right by my ears (I really struggle not to lose it with DD when she comes right up to me and shouts Angry), I do hate sudden noises at night though. I got woken by neighbours shouting (well actually it seemed to be one neighbour and one loan shark) at about 3am the other week and even though it was only a few minutes I couldn't get back to sleep after.

Fell asleep at 7pm tonight and now feel too awake to doze back off. I hate being ill!

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fuzzpig · 20/08/2012 23:27

Oh and I booked my smear test finally. Ages ago when I first got my invite, I got some diazepam from the doctor to take beforehand. I'm scared though. Terrified of the procedure (thanks, abusive bastard uncle Angry) but also I am nervous about being out of control - that's why I hardly ever drink. I am a bit worried about what the sedatives will do Blush

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TheLightPassenger · 21/08/2012 09:25

sympathies re:the smear test. The best smear I have had done was by a sympathetic female GP who with my permission did an internal examination first, so she would be able to do the actual smear more quickly, that really helped. (I have a tilted uterus which can cause difficulties). I have never taken diazepam, so can't advise, but I am also very keen to stay in control in general so again sympathise.

fuzzpig · 21/08/2012 10:23

I'm assuming mine will be done by a nurse. I have no idea if there's any physical reason for finding it painful, this is my first scheduled one (I'm 25) and the one I had at my six week check after dc1 was awful - horrible doctor.

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StevieNicksStuff · 21/08/2012 10:33

Hello.
Am feeling like hell as dh has gone to ask his doc for a referral to be assessed for autism.
We have a dd who is on the spectrum.

I don't know what I am trying to say here but somehow I feel awful asking him to take this step but I also need to find out as it is like living in chaos, nobody to talk to, having to talk them through everyday stuff.

fuzzpig · 21/08/2012 10:57

Wow, that's a really big deal isn't it, no wonder you feel wobbly. Does he feel he is on the spectrum, or is it more that you are persuading him? It may be quite hard to get a referral as he's an adult, I was very lucky to get mine, I think it was only because I am 25 so still pretty young, and have a lot of MH problems.

Has he taken anything with him? I had a list that I'd written with lots of symptoms.

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StevieNicksStuff · 21/08/2012 11:47

Thanks fuzzpig.

He is back now and the doc refused further investigation on account of one question she asked him namely did he have repetitive behaviours. He said no.

Actually, he does. He does a weird thing with his eyes when he is eating or watching television.
He hardly talks, would never instigate a conversation, has never had a friend, avoids social contact completely, needs prompted to show affection/ talking and is completely incapable of any form of organisation yet has managed to run a one man business for 20 years.

I only found out that the books have not been done for the last 4 years and am in a state of panic but have no book keeping experience. I created an easy filing system but he tipped it all out to look for something and left it like that.

He agreed to an online test and scored highly and agreed that he would approach his doctor for a referral, yes, probably due to me asking him to do so but he did recognise certain of his traits were unusual (or similar to some of our dd's traits).

fuzzpig · 21/08/2012 12:33

Not a good move by the doctor. Not sure if you've read this page but it's a really clear explanation of the symptoms. Repetitive behaviour is just one part of one element in the 'triad of impairment'. It is unfair for the doctor to dismiss his case just on that. Surely that's for a psychologist to decide, not a GP who seems to have a rather too basic idea of ASDs Hmm. Perhaps I'm being unfair but it winds me up no end that there is such a massive variation in GP treatment/understanding (I am really finding this with physical health right now - I could be diagnosed with CFS within a few weeks when I know people who have battled for years because their doctors are dismissive). There is such a lottery, it is not fair. I am lucky to have found an excellent doctor and I always make sure I see him now.

Also behaviours like that aren't obvious all the time. Nobody else knows about my repetitive behaviours because they are all in my head - my rituals are things I say to myself, lists and conversations I run through in my head constantly, they drive me crazy but even DH is unaware of them unless I tell him. But they are real and a very big part of my AS!

What is the plan now? Does your DH agree with the refusal, or does he agree that the behaviours you describe are repetitive and that he should've said Yes to that question? Does he want to take it further? He could perhaps return to that doctor and say he answered wrong (a decent GP would understand) or perhaps see a different GP? Might be worth phoning the NAS helpline (you should be able to get the number on the link above) as I found them really helpful for advice on how to approach my doctor.

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TheLightPassenger · 21/08/2012 19:37

I agree with fuzzpig, I always think that genuine people might underscore themselves on the AQ or with assessment questions like the GP asked, as they might not realise how much they struggle socially etc.

fuzzpig · 21/08/2012 19:52

Quite, and if (because of your Aspieness) you are avoiding a lot of social situations, how are you supposed to know how you act in them? I'm sure that's why I have only realised this since starting work. I was forced into situations I'd been hiding from for years, and had loads of 'normal' people to compare myself to where previously I'd had none.

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Kladdkaka · 21/08/2012 20:18

I have a diagnosis of Asperger's. Repetative behaviours is one of the triad of impairments. There are lots of symptoms of autism that vary from person to person but all autistic people share the triad of impairments. If you don't have one of them, you don't have autism.

That said, repetative behaviours is a very broad brush. The primary form of repetative behaviours in Asperger's is what are called 'special interests'. For my daughter that means she is obsessed with and spends all her time on anything to do with Anne Frank, the holocaust, Africa and Japan. For me, it's certain authors, where I have all their books and read them again and again and again. For my husband (3 AS in the house) it's his radio, he's a complete electronics geek.

The second area that repetative behaviours covers is routines, rituals and lists. We go on holiday to the same place every year, have done so for 30 years. We get there, put up the tent, go and get fish and chips which have to be eaten out of the paper sat on the bench overlooking the beach, followed by bubblegum ice-cream. Any deviation from this and the holiday is ruined. It is our ritual and it has to be followed. Do things have to be done in a special order, does not following that order cause problems. Does he makes lists. Does he (like me) have lists of lists). It all about creating systems and systems within systems to create a sense of order out of a chaotic world.

If you still think your husband needs a referral for assessment approach the GP again but go better prepared. They are looking for the triad of impairments. Go through each one and the behaviours associated with it and make a list (easy for an aspie Wink) of all the problems he has in this area. Show the GP how he meets the diagnostic criteria for each of the triad.

There is a book called Parenting Your Asperger's Child which you may find useful. I know it's not you child you need help with, but that book has a long and detailed checklist in it of autistic behaviours that come under each of the triad and how they look with examples of what that means. One of the triad is impairment in communication, what exactly does that look like? It's also very useful because it brings up things you may not have even connected to being autistic. For example talking to loudly or quietly, sitting or walking too close to you, deconstructing their food. I had it because of my daughter but I used it to help me work out what I needed to tell the doctor for my own diagnosis too.

Oh yeah and don't forget the 4th unofficial triad: WoW subscription :o

Kladdkaka · 21/08/2012 20:21

Also theory of mind deficit means that people with autism are neurologically wired to not tell the doctor what they need to tell the doctor. It is very difficult, often impossible, for us to grasp that the other person only knows what we tell them. We think everyone knows everything inside our head, even when we're clever enough to know it's not true, we don't feel it's not true. (Google Sally Anne test for more info on this impairment)

fuzzpig · 21/08/2012 20:33

Completely agree on the ToM front, I am always finding myself thinking "how can you not know that?" until I remember that, erm, I didn't tell them (something I've only just started being able to recognise!). I am a rubbish mind reader and yet I expect others to read my mind! Cruel irony

I don't have the 4th part of the triad though I'm afraid :o

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StevieNicksStuff · 21/08/2012 23:53

Thanks for this excellent information and I will look for these books plus spend some time reading the NAS pages.

I had a bit more info from him re his visit to the doctor. He said she had cold hands (as he also had a physical complaint) and he was a bit cross about that. He felt cross enough to say 'no' to anything she was going to ask. We have spoken about it (well, I spoke) and he wants to learn more.

He is obsessed with Space. Telescopes in rooms, Brian Cox programmes, Mars landing....
We have only gone out as a couple twice in nine years - he did not like it and wanted to come home. People tried to in conversation and he felt hellish. He has always been known for being very quiet.

He is quite happy not to go out again. We never go on holiday and he slopes off if my friends come to visit as he feels uncomfortable speaking to them.

It was one hell of a job dating him but I persisted and finally we married after a few years. He is lovely but very unusual.

fuzzpig · 22/08/2012 10:33

mini update - had smear test this morning and it was fine! The diazepam made me very tired so my muscles were relaxed but I didn't feel out of control at all. :)

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StevieNicksStuff · 22/08/2012 12:32

Glad that everything went well for you, fuzzpig.

Can you have a duvet afternoon to sleep off the diazepam?

fuzzpig · 22/08/2012 12:50

I am tempted to sleep, but I'm going to try and stay awake for the day. My sleep pattern has been a bit crazy anyway lately - I'm actually going to ask the doctor if he will prescribe diazepam so I can use it on the nights I need to - and if I sleep during the day it tends to mess me up even more. So I'm just relaxing and reading and looking forward to watching my new DVD (Coupling series 3) tonight with DH and an enormous white toblerone :o

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TheLightPassenger · 22/08/2012 21:22

glad it went OK fuzzpig. the gp may be wary of prescribing further diazepam for sleep issues due to the risks of tolerance/dependance on the medication .

fuzzpig · 23/08/2012 19:57

Have been referred to CFS specialist clinic in london :(

No idea how long it'll take or what will happen so my uncertainty-meter is in overdrive.

I did mention the diazepam and he is not ruling it out as an option but he's prescribed zopiclone for now.

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TheLightPassenger · 23/08/2012 20:05

Is it this one? www.kcl.ac.uk/innovation/groups/projects/cfs/index.aspx

If you want to PM me where you are referred to, I am happy to phone up and ask how long the wait is for first appointment usually takes, if you want.