Aspergers/ASD support thread

blue_monkey_2

Hi Rebl and welcome to the boards. It is nice to be able to have a moan or sound off, or just get some advice from these boards. It is nice to have others to talk to who can understand just what you are going through.

I have been looking for a diagnosis so that I get my son everything he needs while he is at school and to make sure that his teachers understand his problems, as your son is getting these then there is nothing to worry about in that respect.

Have you claimed DLA at all? Does your son's disability affect things that do/do not do? I get middle care for my son (who is 4) but it means that we can finally go places like Legoland and Chessington as we get passes to get on the rides at the exit and not have to queue with loads of people, little things like this that, while they may seem insignificant, do make a difference and it means we can now have days out and we just take the DLA paperwork or doctors letters that explain DS disability. Give it a go if not already getting this, the worst they can say is no but get some advice from the NAS website while filling the forms in and start starightaway and fill them in over a few days, mine took 6 hours in all to fill in and it is draining and very exhausting.

You can also claim Carers allowance if you get higher or middle rate so if you are not working or earn under £90 then when you get DLA it is just a case of filling another form in.

More than anything I have found that we have been able to do much more. It might also be worth finding out if there is a group in your area (we have one called Angels) for parents of children that are ASD. It just opens access to a lot more things for the children to do. I have found a swimming club for ASD children at our local pool for example.

Can I also ask who diagnosed you as I am still unsure (despite seeing a number of doctors) who actually gives the diagnosis, it would be of interest to know so I know who I have to ask to see.

Sarahsaver

rebl43 wrote: »

Hi, was looking for a bit of advice- my son has just (yesterday) been diagnosed with Aspergers. What do I do now? It seems that I have been waiting for this for so long, but it has dawned on me that now he has the diagnosis, nothing has actually changed. He is 9 and the school is already dealing with his educational needs, so what difference does a diagnosis really make?

how did u get the school to address his needs??? you are lucky in that respect;)

rebl43

Hi Blue Monkey and Sarahsaver,
I haven't claimed for DLA, I wasn't aware I would be entitled. I will definately see about doing so- I suppose if I get turned down, I haven't lost anything. Does this depend on how severe the Aspergers is?
The paediatrician my son is under diagnosed him, we haven't been involved with any other health professional apart from the GP who referred him to the paediatrician in the first place.
Sarah, the school my children go to is a tiny village school with only 67 pupils and so any problems they have are spotted quite easily and action is taken, so yes, we are very lucky in that respect. Unfortunately due to my marriage breaking up we have got to move out of the area at Easter, so the children will be going to a bigger school, but I have been assured that their new school will continue with the 1:1 help that my son is getting at the moment. Do you think I am wrong in thinking that this will be the case?
Thanks for your responses xx

Savvy_Sue

Hi rebl. On one level diagnosis shouldn't make any difference, but sometimes it's helpful to know what's different (I won't say wrong!) with your child because it makes it easier to communicate to other people that he's not naughty or stupid or deliberately being difficult, that's just the way he is!

Yes, getting DLA depends on how 'different' he is: does he need significantly more attention than other children of a similar age? If he does, worth getting help applying so you get that across.

does your son have a statement for school? If he does, that should just go with him to the new school. If he doesn't, it can be a little more difficult to get things in place, but not impossible. I presume you've already alerted his new school to his special needs, and discussed what they will need to do to meet them, and why.

karmacookie

Hi Rebl

Are you moving far from the area? I ask because my son's primary school was in a small village and we were forced to move 5 miles away. As my son was doing quite well at school at the time with not much additional support the Ed Psych felt that it would be really detrimental to move his school so the local authority funded transport for him so that he could stay at ther village school!

May be worth looking into especially now you have a diagnosis as it is almost universally recognised that our children don't cope well with change!

Sarahsaver

GRRR! I am so angry!
my DS was involved in a fight at school and they didnt tell me about it 'we dont have the resources to inform parents of every minor incident'
AND he was going to get kept in at lunchtime because of it, it was only when i objected to the 'punishment' that i was told details of the incident

They have no concept of his needs in fact they have a total head in the sand attitude.

AFAIK if your child has a statement that stays with them whatever school they are at. My ds hasnt got a statement but the schiool he is in does not even help the statemented kids as much as it should

i definitely think its time to move him to another school

rebl43

Savvy_Sue wrote: »

does your son have a statement for school? If he does, that should just go with him to the new school. If he doesn't, it can be a little more difficult to get things in place, but not impossible. I presume you've already alerted his new school to his special needs, and discussed what they will need to do to meet them, and why.

Hi Sue,
He doesnt have a statement- should I see if I can push for one? I think they will help all they can to be honest, they are so good and by the sounds of things it will be a bit of a shock to go into a bigger school where they are not as helpful. I have spoken to the senco at the new school today and she says that his IEP will be carried on there.

rebl43

karmacookie wrote: »

Hi Rebl

Are you moving far from the area? I ask because my son's primary school was in a small village and we were forced to move 5 miles away. As my son was doing quite well at school at the time with not much additional support the Ed Psych felt that it would be really detrimental to move his school so the local authority funded transport for him so that he could stay at ther village school

Hi Karmacookie,
Unfortunately we will be moving 200 miles away so this isn't an option for us. It is such a shame though

rebl43

Sarah, thats terrible!! Surely a phone call wouldn't have been too much trouble?? I'm sorry I can't offer anything constructive, but I really do feel for you, it took me changing my sons school to realise how bad his previous one was xxx

kayla99

Just thought I would share my experience, to show there is light at the end of the tunnel, even if it’s a long tunnel.
I’m mum to a 13 year old boy; he is Dyslexic, has ADHD and has Specific Learning Difficulties which place him in the Autistic Spectrum [when reading this bear in mind, we all know we don’t develop these conditions, we are born with them].
For years I battled with my LEA and CAMHS to get support for him, I was always pushed from one to the other.
Two and a half years ago due to matrimonial breakdown I was forced to move, and moved some 30 miles…..New LEA and New CAMHS!
All of my sons difficulties were identified within months and the professionals now involved could not believe he was left untreated, as he fitted diagnostic criteria to the book.
Now he has a SEN, 1:1 input in school, social skills training and he is a different child, his SENCO can’t believe he is the same child, only downside is he is on 56mg Concerta XL daily, but it works for him. In 12 months his comprehension ability has gone from that of a 6 year old to nearly that of an 8 year olds.
I have had a long journey to get his needs recognised, but now they have, the support given is amazing. So any one out there who is struggling to get the support they need, don’t give up, because you’ll get there.

Now I wonder, do I have the strength to start another battle and question the original LEA and CAMHS over there treatment of him, as there mis-treatment will affect the rest of his life! ! ! !