Aspergers/ASD support thread

me_and_me_monkeys

Sarah Saver - Sorry had to cut off quick last night as No1 monkey decided that he wanted to see what I was doing on the computer.

I know some of the things that we see as cute and quirky professionals see as 'ahh-ohhh' BUT we are the ones who have to live with it, accept it and love the whole package not them!!! they just have to write a few reports and forget about the individual.

Find your local support group, get in touch with the local parent carers association if you are not already. School may have another parent with a similar child who is willing to meet up with you at school for a quick chat. It all helps.

I like to think of my son and his ASD as the most fantastic gift in the world, but in the box came a piece of tat from the poundshop. BUT a gift is a gift and why waste the most fantastic gift in the world cos you don't want anyone to see the bit of tat. I am having to muster my strength for the battle of diagnosis for monkey NO2 so I can so relate to where you are. PM me if you wish to. Better dash monkey 2 and 3 are finishing playgroup

Sarahsaver

AnnieH wrote: »

I thin my DD has ASD but I haven't even been seen by anyone yet, and she's nearly 9. It's been a long fight but my HV is now on my side, and fighting my corner with me. Hopefully we'll get seen soon, but it won't make a difference day-to-day, just something to explain why she is like she is, and how she is special and I still love her even though she is different

Ooh hun go and see someone sooner rather than later! I could not have got as far as my son being 9 without going completely off my rocker:eek:
My school nurse is very helpful too. You may have more of a struggle to get a girl diagnosed because ASD is much rarer in girls.
Good luck:)

Sarahsaver

Update - GOOD NEWS!
Progress already, ds has been put back on the SEN register

PasturesNew

This has been festering around in my head for a few years now since I first heard the word.

My sister announced one day that she thinks our dad has Aspergers - so I found out about it. And yes, he does seem to fit the profiles I've seen.

And it made me realise: "for the first time in my life, I am reading about myself". And I think I have it.

I won't go into my list of attributes. It serves no purpose.

But, I am keen to get officially diagnosed - so I can lay to rest my thoughts that I have it, or am I simply just peculiar/distant and socially inappropriate/inept.

I've tried looking online, but while there is a plethora of sites with snippets here and there talking about it, I can't find one definitive site that says "Choose your town ..... go here to find out if you're a loony or just have aspergers (obviously a loony with a name)"

Any help would be great. I think it's time I put this ghost of wondering behind me as part of my action plan to my new, improved life.

Taffoire

my son has Aspergers (he's 6), I'm lucky in the fact I've managed to push to see the specialists for him.

This has proven to be an extremely useful resource:

The National Autistic Society - Autism services and support

In the first instance I would suggest contacting them for an information pack about aspergers. When I did this I received some very useful leaflets, list of publications which make interesting reading and best for us was a "checklist".

When you've received it, I would make an appointment to see your GP taking the information with you. This way you can show him what you think the problem is. Also the NAS have the list of specialists in your area and you can ask your GP for a referral.

If after you've read the description / visited your GP you're not sure you fit the Aspergers box, you may have a borderline ASD and would still benefit from support / help.

I really hope this hasn't come accross as condancending (sp), just wanted to share my experiences so far .

Please feel free to PM me if I can help at all with what to do next

Lou xx

DebtphobicDeirdre

Hi therePasturesNew
We are all on a huge spectrum from social Mega-success to unable to relate to others at all. At some point someone pinpoints a particular spot that gets defined as "abnormal" and is given a name.
As you are worried you should go and find out more about it all and then see your GP. Just remember that wherever you are on that spectrum you are just as good as anyone else.
My son is in the normal range- he was tested by a woman from Manchester University, but he has difficulty socially and helping him keep his confidence up is a major ongoing task.
((((((((((hugs)))))))))))))) to you- I hope it all goes well.

Savvy_Sue

I was summonsed to see the school doctor when DS1 was 11, at the end of Year 7. I didn't really know why, thought it was just to go through the family history of deafness. When I got there, she had a chat with both of us first, asking how he 'felt' about things - school dinners, secondary school, next year, things like that. How he 'felt' - but - he's never really been big on feelings.

Then I said we were moving over the summer so he'd be starting at a new school, and she asked how he 'felt' about that. Still

Then she sent him back to lessons and carried on talking to me. I could feel that there was something she wanted to tell me about him, but she wouldn't come out and say it. I was dredging around in my mind because I was sure I KNEW what she wanted to tell me. Finally it came to me: "Are we talking mild Asperger's here?" "Oh I'm so glad you've asked that, I didn't know if you'd know what I was talking about." "Well I don't, but I heard a piece on Woman's Hour about it, then a friend phoned me and said she wondered if her son and husband might have it. That's ALL I know, but it did sound a bit like DS1 too."

We chatted a bit longer, and she recommended Tony Attwood's book (and I see he's written another one, which I haven't got but would recommend on the basis of the one I DO have).

Then I went home and told a friend "They think he's got AS." "What's that?" said the friend, I gave my brief and limited understanding, and the friend said "Oh, I'm one of those." And I thought "Yes, of COURSE you are!" And my friend then said "I was thoroughly miserable for about a year when I was a teenager, because I wanted to be like everyone else, and I couldn't be. And then I realised I couldn't be, and I decided to stop trying, and I was an awful lot happier."

I would say my DH also has it, although he's adapted an awful lot. And my FIL certainly has it, although I wouldn't dream of telling him so.

Now, while a whole heap of things suddenly made sense following this conversation with the school doctor, I remain quite glad that we didn't find out what was 'different' about DS1 until then. Because if someone had told me at 2 that he had AS (and I suspect that even at nursery they wondered!), I think we would have made a whole lot of allowances for him and he would have ended up far less able to 'cope' with 'normal' life. As it is, if he didn't tell you, you wouldn't immediately realise. Although like our friend, if he DID tell you, you might well go "Of course you are!"

Having said that, I know that DS1 is only mildly affected: his oddities were never such that I felt tempted to march him down to the doctor and refuse to leave without a referral! If the child is more strongly affected, then KNOWING and reacting accordingly both at school and at home is pretty much essential at a much earlier age.

Now after all that rambling introduction, I come to the point I picked up on:

PasturesNew wrote: »

But, I am keen to get officially diagnosed - so I can lay to rest my thoughts that I have it, or am I simply just peculiar/distant and socially inappropriate/inept.

I don't know how you get diagnosed as an adult, although your GP is your first port of call. The school doctor we first saw said that she was not diagnosing DS1, just suggesting the possibility, and if we wanted a formal diagnosis, he'd need to be referred to a specialist. As we were about to move out of the area, she didn't think there was any point starting things there,

Once we'd moved, we saw the school doctor in his new school, and she wasn't sure what benefit there would be to DS1 in a formal diagnosis - he had coped before, seemed to be coping now. I had enough on my plate without a load of medical appointments, so we left things as they were on the understanding that if he became unhappy or wasn't coping we could go back. In the event, he continued to cope fine although in year 11 his English teacher noticed that he just wasn't answering exam questions 'properly' and was in danger of failing to get a C when he was capable of an A, and she wanted him to have extra time in exams.

So we were back in touch with the school doctor, who said to go to our GP, who wrote to the school doctor, who talked to us again, and then wrote a letter to get him extra time. I'm still not sure he has a 'formal' diagnosis, and now he's at Uni he doesn't get extra time or help, because doing a subject he's intuitively good at, he doesn't need it.

What you need to be aware of is that even if your GP is happy to refer you, it may take a very long time for you to be seen by the appropriate specialist: unless you're in crisis, it's likely to take a while.

And, even if you DO see a specialist, is a formal diagnosis going to make much difference? You will still be "peculiar/distant and socially inappropriate/inept". Yes, you'll have a label for it, and even a reason for it, but it won't, of itself, make you less distant or inept.

PasturesNew wrote: »

Any help would be great. I think it's time I put this ghost of wondering behind me as part of my action plan to my new, improved life.

Whether or not you have AS, you can change your behaviour, IMO. And you can also start to think about the strengths you get from your 'ineptness'.

As an example, the friend who phoned me who thought her DS1 and DH might have it - that chap had a habit of standing really really close to people. As he was over 6' tall this could feel quite intimidating, especially to young ladies. Now, he realised he was doing this - or someone told him one day! - and began to ask people "Does it make you uncomfortable if I stand this close?" So I'd say "Yes, it does." But he wouldn't move further away unless I said "Yes, it does, please move further away." However, at least he was ready to consider a possibility which might not occur to some 'normal' people - I had a manager who used to stand too close to me and call me 'love', who was mortified when I said I found it inappropriate!

So, you could do worse than start telling people that you sometimes need to be told things which they think are obvious. I would not say that DS1 is incapable of lying, but he doesn't mince words, and the friend who said "I'm one of those" is an absolute rock if I want the truth about something. When I was very upset about something and he said I was not only doing OK, but coping FAR better than most people would with an extremely difficult situation, I KNEW he wasn't just saying it to make me feel better.

I've rambled enough, and I might be making no sense at all, in which case I know you'll tell me! :rotfl:

BTW, through the NAS (mentioned above) you might even find a local group you could meet up with, which might be useful in terms of reassuring you that being different is just that, being different.

Ted_Hutchinson

I'm not always convinced that teachers are the best people to be making a medical diagnosis. I've known some pretty nutty teachers and they can have it in for certain kids that get up their noses. Mostly the kids the teachers hate are those with the most individual personality.

The Tragic Consequences of Drugging Our Children -puts a different perspective on ADHD.

While it may be helpful or instructive to find out more about these things I'm not altogether certain having a "disability" label is a good thing. I suspect many "Disabled" students are playing the system in the same way the benefits system is abused by those in the know.

This post just happens to follow Savvy_Sue's and I would be dreadfully upset if anyone thought it was in response to or a comment on her post. It isn't.
In the same way MOST disabled benefit claimants understate their needs/problems I'm sure most disabled students are equally reluctant to own up to the true extent of their disability, however, there are exceptions to every rule and it is reasonable to consider the cons and well as the pros.

seven-day-weekend

My adult son almost certainly has AS, and it happened the same as with you; about two years ago two (quite unrelated) people asked me in one week if he had it, so I read up on it and thought 'they are writing about my son'. My husband and I discussed it with our son, he too thought that he may have it.

I did do some research on diagnosis as as adult and the Nastional Autistic Socity was very helpful, sending us loads of stuff including help on being diagnosed. It's quite difficult for adults to be diagnosed, but not impossible.

My recommendation is to initially approach them for any advice.

My son eventually decided not to go down the formal diagnosis route, which I personally think is a mistake, but he's 27 and it's his decision. However, he has now got himself a lovely girlfriend who is diagnosed with AS. My son thinks it's great, can't believe his luck - as he said 'how many other girls love playing with toy soldiers as much as I do?':rotfl: :rotfl:

Wishing you the best of luck in your quest.

PasturesNew

Thanks to you all.
I've spent the last couple of hours following everything up - and in the next month or so I will register with a GP and get the ball rolling.
I just want closure.
Now I've taken a closer look, I am more sure that I do have it.
I don't want to write right now. This is hard. I don't want to be labelled "disabled". I just want to set straight in my own head what has been going on all my life. So I can then box it up and deal with it once it has a name.
I've spent my life developing coping strategies which are very tiring, to counteract these inadequacies... without realising it wasn't "me" at fault but AS being present. Nobody would spot that I have AS at all, unless they were very clued up! Because I can hide it. A bit like somebody with a limp only ever standing still, then wobbling off when nobody was looking

Being diagnosed won't change much in my life, except I can then target my weaknesses more specifically to build them up, knowing that it isn't "me". I've spent most of my life not doing anything because of feelings of inadequacy. So a diagnosis will just let me be able to say: Right, it wasn't YOU, it was this thing, which means we now have a target to aim at.

Thanks for all your help.

I've bookmarked this (gotta love those set patterns of behaviour!) and will be reporting back hopefully. I doubt I will retreat into my little quiet shell this time. I am doing this to "come out" as it were.