Aspergers/ASD support thread

blue_monkey_2

I have been having a read up on ADHD now and I've come across a messageboard from parents in the US. These kids are all on Medication and if the parent does not give it everyone is asking why and then goes on to tell them what to give and what extra medication to give to help their kids sleep, etc.... Scary!!

http://www.adhdnews.com/forum/forum_topics.asp?FID=1

blue_monkey_2

mummytofour wrote: »

Ooohhh just found this! Shall keep me busy for hrs lol
Just wanted to come and play, I am mum to five one with ADHD adn ASD plus a couple with un-dx ADHD.
Off to read now.

Welcome mummytofour, apologies for missing you earlier, had a few problems so missed your post, you will be more than welcome on this board. Hope to see you soon. x

MyUserNamesTaken

PasturesNew wrote: »

Looks like I am the only adult here with Aspergers then.

Always the odd one out.



But managing.

Aspergers was not diagnosable when I was a child. I was just a naughty child, taken to a child psychologist, changed schools, parents always up the school as I was in trouble (nothing major, no fighting, no stealing, just disruptive).

My parents didn't know I was "different" so they've never treated me any different to my siblings. So the advice given by some of treating your AS kid the same is sound to a good degree. But you probably need to bear in mind that at all times, we are seeing things you aren't; we like to take some time (30 seconds or so) to observe... next time your kid seems preoccupied by a dot on the wall, stop, ask them to show you. Ask them what they are thinking. Just listen. Then you can continue on your journey. Just slow things down a bit when there's new stuff to be seen. And listen.

I saw a bird today. Nobody else did. I probably took in every detail of that tiny bird and stopped for about 20 seconds to watch. 1001 thoughts in my head - a hyper-awareness moment. Then I was back to doing what I was there for.

We just think a lot more about tiny things, little details, that you don't even notice. They're important to us because it's an odd moment. It's those "observer on the real world through a window" moments, when we aren't really with YOU, we are inside ourselves.

With Aspergers we are mainly "here", but like to escape "there" when we see something tiny... different. Oh and shiny things

It only takes 20-30 seconds ...... but it matters.

You're not the only adult Aspie on the boards.


My lad is also an Aspie. He was diagnosed at 6 (all well and good), and it wasn't a hard slog like it is for most people. The hard slog came AFTER his diagnosis. It has taken me 5 and a half years to get a Statement of Special Educational Needs for him. Due to him being above the national average academically, the local authority has always argued that he did not need a statement. He wasn't failing academically. It didn't matter that he was being bullied by teachers and kids alike and that he was refusing to go to school, etc, etc. Even in March this year, they said he did not need a statement as he was doing fine (even though his reports showed a marked deterioration in his behaviour and effort in class and he was, for the first time, being threatened with exclusion due to his reactions to the people around him). I had to appeal to SENDIST to get the LEA to do a statutory assessment, the result of which is that he now has a statement with 25 hours LSA support per week (that's almost the entire school day). I have taken him out of 3 different schools, as they could not (or would not) cope with his disability, and one actually discriminated against him due to his disability.

He is now at an absolutely great mainstream school and is being moved up sets in English, Maths and Science and Modern Foreign Languages when he returns to school next week. He hit the Science targets for his current school year within the first half a term of being there. He's way beyond his age group in ICT. He's top of his year for MFL (both German and French), is on level 6B for Music (he's in Y7). He's flying along in all other subjects bar one - PE. I put it down to the attitude of the school and his statement. Now my son isn't being bullied (the school is really strict on bullying, and do deal with it should it happen). The school has a brilliant SENCo who is very experienced in dealing with kids on the AS. My boy is happier now than he has been in a very long time. Granted, he no longer goes to school in county, but it was well worth it to get the best for him. I have to pay to take him to school because I have chosen to send him out of catchment and county. I've had to fight all the way to get him where he is today. The way I see it...you only get once chance at an education. It's up to me to make sure my son gets the best I can provide for him.

Snaggles

Crikey BM, that is scary!!

Welcome mummytofour, it sounds as though you have plenty of experience of all this sort of thing with your children.

I'm never quite sure where ASC/ASD finishes and ADHD starts - Ryan fits the description of ASD pretty much exactly, although he is noisy and boisterous too. He can't cope with loud noises from other sources though.

MyUserNamesTaken

PasturesNew wrote: »

Well, having only now (late 40s) found out why I am different.... and having a high IQ, I have a lot inside me to come out. I know how I think; I know when; I know why. It's painful to type this stuff, but it's like a story that has to be told.

Mostly it seems to me posters are trained professionals or parents. But they've never lived the moments. Never had the thoughts. So I guess it's a unique insight to hear this from a fully functioning, independent (hopefully coherent), intelligent adult who is able to try to put it into words... although finding the words is difficult sometimes without lengthy explanations/examples.

I have always worked. Always supported myself. I've bought/run and sold my own houses alone. Run my own household unaided. Thus proving it isn't a disability that will hold a child back in that sense of the word.

I'm well above average intelligence, which apparently is why it is hard to spot because people like me are so far ahead of the others, it's been put down to "being bored", which I guess was true in that many lessons weren't moving fast enough. I wanted the teachers to get to the end/get to the point, so I knew what they were on about. Yet so often lessons were at the pace of the others.

I know I've already just replied to your previous post, and I thank you for taking the time and making the effort to post the above. However, as an Aspie myself and being the parent of a child with Asperger's, I think it's important to point out that Asperger's and ASD affects everyone in different ways. It's a spectrum. As such, your ability to cope with the world around you (no matter how odd and scary it seems) depends on whereabouts on the spectrum you are. By the sounds of it, you're at the top end of the spectrum. You have Asperger's, but you sound like you are very high functioning (most Aspies are, but even then in varying degrees). Even so, many adult Aspies still need help coping with the day to day things that NTs take for granted. High functioning Autists and those with Kanner Autism are far less likely to be able to live independently.

Incidentally, I'm apparently of very high intelligence (158 IQ), went to Uni, work for myself, own my own house, etc, etc... I could agree with you that Asperger's isn't a disability that would hold a child back, but I know that it is totally subjective dependent entirely upon the severity of the autism. Even then, I also know that the mental and psychological impact of having an ASD must also be taken into consideration. The depression really kicks in during adolescence when you realise just how different you are and that no matter how hard you try to fit in, you're never going to. Depression, OCD and the such like are all psychological illnesses associated with ASDs. I guess it could be said that the actual autism doesn't necessarily hold you back, but the depression and the such like will definitely work against you. You're not trying to climb just one mountain here...it's a whole damn mountain range. With the right support and help (NAS, local support groups, etc), you can get through it.

I'm the treasurer for my local NAS branch...we have two Aspies on the committee, both of which are also parents of children with Asperger's.

Someone earlier asked about the Help! programme - I can thoroughly recommend it. If you can get on it, do so...they offer loads of advice and help, as well as allowing you to meet other parents in your local area who are in the same boat as you. It makes things a whole lot easier when you see just how common ASDs are (1 in every 100 people has an ASD.)

http://www.think-differently.org.uk/

MyUserNamesTaken

kit wrote: »

I have been 'advised' (ok, told!) that ASD is no longer 'PC'. We are now meant to say ASC ..... its a condition, not a disorder.

As an Aspie, I couldn't give a toss what people call it. I'm an Aspie...some people even consider "Aspie" offensive. Anyone else see the irony in discussing what's offensive and what's not in relation to Autism?

(I'm an Aspie - I'm allowed to say that. )

Actually, it could be argued that changing the labels could be seen as offensive to those on the AS, as change is something we all have a problem with. We like things to stay the same. We also like things to be straightforward and simple. Changing the labels applied to us leads to confusion and anxiety. I'd say it's politically incorrect to change labels without taking into consideration the needs of the very people you're trying hard not to offend.


The worst one I've heard is "diff-ability"...oh, that one made me groan out loud.

Snaggles

Thanks for that post MyUserNamesTaken, I think you are completely right. Sometimes I find myself so scared of saying the wrong thing that I don't say anything at all, and if I did use a non-pc term, it wouldn't be with the intention of causing offence, it would purely be because I hadn't realised it could be seen as offensive.

Personally I think Aspie is completely non-offensive, and would have no issues with having my son described as that. In fact it sums up the affection I have for his little differences. I can see a time though when I will struggle to communicate the issues my son actually has because I will be too busy trying to avoid political correctness pitfalls.

'Diff-ability' is pretty awful though!

kit

MyUserNamesTaken wrote: »

As an Aspie, I couldn't give a toss what people call it. I'm an Aspie...some people even consider "Aspie" offensive. Anyone else see the irony in discussing what's offensive and what's not in relation to Autism?

(I'm an Aspie - I'm allowed to say that. )

The worst one I've heard is "diff-ability"...oh, that one made me groan out load.

"diff-ability" - I've not heard that before....... I hope I dont get 'told' that I have to start saying that!

Do you mind if NT's refer to you as an Aspie?

Snaggles

MyUserNamesTaken wrote: »

Anyone else see the irony in discussing what's offensive and what's not in relation to Autism?

Lol, that is SUCH a good point! :T

I am now chuckling at the numerous occasions I have had to hide my laughter behind books, handbags, shopping baskets etc, because Ryan has said something very true but rather offensive like 'That lady has a big bottom, hasn't she?' :rotfl:

MyUserNamesTaken

kit wrote: »

"diff-ability" - I've not heard that before....... I hope I dont get 'told' that I have to start saying that!

Do you mind if NT's refer to you as an Aspie?

Nope, don't mind at all. At the end day, I am different. My brain is wired differently to a neurologically typical person. I am not ashamed nor embarrassed about it. I spent far too long wasting time trying to be what I thought other people wanted me to be - trying to fit in. Now I accept myself as I am. Those who don't like it aren't worth bothering with.

I believe that those parents who find the phrase "Autistic Spectrum Disorder" offensive do so because they have a problem accepting that their child has a genuine disability. "Autistic Spectrum Condition" sounds less serious and harsh. Admittedly, it is a very hard thing to accept, but changing the label in order to make it an easier pill to swallow doesn't alter anything at the end of the day. It doesn't really matter what you call it..it's still Autism.