Aspergers/ASD support thread

karmacookie

Hi Jodie

Sorry you've and your son have had such a hard time getting a diagnosis.

I was lucky in that respect DS now 13 was diagnosed high functioning autism when he was 4. There is not really much difference between this and aspergers. I have claimed DLA since then!

My son started high school last august but should have gone the year before. Due to concerns about how he would cope he was allowed to repeat a year at primary school to give him a chance to mature more and build confidence.

This really did help. High School so far has not been without problems but we are all coping quite well. I really think that extra year helped a lot.

Good luck!

Snaggles

Thanks for the link to the DLA guide - I was actually sitting here doing mine when I read that post!

Pretty sure I've done it all wrong though....arrrrgghhh

blue_monkey_2

I've just got the forms for my son's DLA - so far it has taken me 6 hours to fill them in!! It is exhausting, I actually did not think my life was that bad until I started writing, and writing, and got to the long bits and thought oh no, do them tomorrow. 6 hours on and I have nearly done but have another few weeks so will do it at the last minute. I too fet bad about claiming - I still do - but it will be nice to pay for the extra things I can get for him to do in smaller or private classes so will use it for that.

blue_monkey_2

I wanted to ask what you all thought of these:

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=624&a=7669
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=624&a=7503

I thought they might be useful inconfined places, such as when we was on the Eurostar he went and sat himself on someone elses table to watch their DVD and them talked all over. Sometimes (no, all the time I guess) I get tired of apologising and I think that if they knew he had a problem it would not be so bad. but on other websites people have said that is it is wrong that strangers label your child and they are the ones with the problem.

I am not sure. If we was on a train or a plane where space was limited it would be helpful to know that there is a reason for him being restless, shouting, tantrums, etc... and I might not feel I have to keep apologising every 5 seconds (which is iring in itself - maybe I am trying to make life easier for me). So honest thoughts, do you think they are good or bad?

blue_monkey_2

Hi Snaggles, are you still on yours too? You started yours before mine I think!! I read that form too and it says to give reasons why they need more help but I have not done that, heck there is not even wrong to write all the whys and wherefores, some of it is very confusing but the guide does help. I spent an hour today on it as well.

fallen_angel_69

i quite like the idea of a badge from the autistic society west midlands i got 2 cards for both my daughters they say my son/daughter has autisim and they find social situations difficult and because of this their behaviour may appear to be strange to you please be tolerant patience and reassurance will help us they also do one for older children which is roughly the same but is designed more for emergency services .they are not on there website but there phone number is 0121 450 7575 i only found out about the cards a couple days ago but they came next day in post so they are really quick and helpful when you talk to them

tilly's_mum

Hi BM

There is a ebay shop called Autism Awareness UK that sells lots of badges and t shirts etc too, and they are made by people with autism.

Cheryl

jodie

Thanks for all the advice, I am looking itno it all now, theres so much stuff I have to be reading and looking into that my head feels like it is gonna explode lol.

seven-day-weekend

tilly's_mum wrote: »

Hi Jodie



You really should claim DLA - its hard to think of your child as having a disability and the things you do for him you do as his mum. But by claiming DLA not only will your family get more money (you may also be able to get carers allowance) you should be able to get more help (you may not feel you need it now but you may do in the future) as he has been assesssed as needing help. You may be able to get grants for equipment or holidays etc. And it may help in the statementing process.



Cheryl

And it may also be of help to him when he is older and able to claim it in his own right.

Snaggles

BM - I *think* I've finally finished filling in the DLA form, but I'm now going through it and checking it against the guide, making a few alterations here and there.

The bit that I am finding most confusing is part 24 which asks what help the child needs when they go out during the day or in the evening.

The first question is 'What they do or would do if they had the help they need'. Then it asks how many days a week, how many times a day, how long do they usually need help for each time. Then it says 'What help do they need from another person.

Do they mean a person other than me? And are they saying how would he act without that help, or how would he act if he DID have the help he needs. Both answer boxes are really small, and I feel like I've already said what help he needs on other parts of the form, so do I just say the same thing again, but try to condense it to fit the box (pretty much impossible), or are they asking me something else and I've just misunderstood the question?

I'm sooooo confused! And it doesn't take much!