ASD diagnosis this week

[nibsy]

Hello,

I posted a while ago when I was awaiting the ASD diagnosis we were given this week for my son who is now 3.2. The emotions are pretty raw right now - relief that its all over and we finally have clarity and sadness that my little boy has such difficulties that wont just go away.

I now have portage and regular speech therapy in place. I've also applied for 1:1 support at preschool which I should hear about soon.

I've read around on ABA and I'm keen to start a programme as I'm sure DS will respond well to this but have no idea how to take this forward. With a young baby to care for I dont have a huge amount of time to set this up so would be looking for someone to run the programme for me. Is there a list of providers anywhere? Any recommendations? Im based in Bromley, Kent.

Thanks for your help in the past and I expect to be a regular on this board now.

Nibsy

Hi Nibsy,
Drat re diagnosis. Every parent hopes that there won't be additional challenges in their child's life. Be kind to yourself for a while.
Can't help re the ABA stuff but there are others here who know more about it than I do (though I work with AmbitiousAboutAutism, who run a school using ABA methods).
I'm on the autism spectrum. Our difficulties don't go away, it's true, but with the right help and support we can minimise them. And there are benefits that most of us have, too - amazing ability to concentrate, great attention to detail, ability to see and hear and sense far more detail than others can, etc. Looking for those abilities and helping us to use them is so important. Otherwise it just feels like it's a problem rather than a mixture of good and bad.

The main thing is social skills. The sooner you start teaching a child those, the better the long term outcome.

Be really clear with face expressions- make them really big and hold them for a really long time, explaining what they mean, for example. We can't 'see' them, or body language, so interpreting people is so hard.
Many good people here...ask anything...

Hi Nibsy, it's a strange mix of emotions when you finally get the diagnosis isn't it? DS2 was recently diagnosed with Aspergers (he's 7) and although I was 99.9% certain he would get that diagnosis part of me still hoped that the doctor would turn around and say "oh don't worry he'll grow out of it!!" It was a relief to think that I could finally get on with things and get my son what he needs in terms of help etc but also the sadness of the difficulties he will face in the future.

I'm in your area and I would really recommend you get in touch with the Burgess Autistic Trust (previously called Bromley Autistic Trust). They are a local charity and the people who work there are fantastic, with loads of experience of working with kids and adults with ASD. They will give you loads of good advice on where to start with getting help etc, plus they run free courses on all kinds of issues relating to ASDs. I have been on a couple and they were really informative - plus you will be meeting other parents in the same boat which for me was just as important as the info from the course! This is their webiste: www.bromleyautistictrust.co.uk/

Also the national autistic society's website is good - they have lots of free leaflets you can get sent to you.

Hope this helps.

Hi Nibsy, hope you're doing ok with everything. By the time our ds for his diagnosis we knew what was coming so it wasn't really a shock. I was initially worried about the stigma a dx would give him at school but I learned it's more a key that opens the doors for you and the help your son will need.

Have the school spoken to you about the possibility of a statement? Has anyone gone through all this with you? We're incredibly lucky in that ds's nursery teachers son has asd so she helps us navigate the system but I've read about so many others who don't get the support from schools.

Thanks for your kind responses. Shouldnt really have been a shock as we've been seeing the paed since he was 18 months so its been a long time coming. His development seems to have sudden spurts which have confused the picture for me but now its so clear. A statement has been mentioned as the next step but I need some time to understand the help he will need in school before I start down that path i think.

Amberlight - thank you so much for this positive message and advice on social skills. I'm trying to work on social skills by involving DS with caring for our baby - eg. discussing why he's crying, happy etc but not sure how much he understands. This is definitely the area where he needs most help - he is getting better with adults and clearly wants to interact with his peers but just doesnt know how to and so withdraws. :(

Surburban dream - I've been in touch with Burgess and now we have a DX I really want to get on some courses so great to know how supportive they have been to you.

Nibsy

Nibsy, the National Autistic Society and the local autism charities often have info about social skills groups or training sessions etc - worth finding out about it. it takes many of us much longer to focus on social stuff. Decades rather than a couple of minutes, in some cases. Cheer every tiny bit of progress.
With peers, the knack for many of us is to find people who are interested in our specialist interests and befriend those people, rather than trying to work out how to cope in a busy, noisy mixed play setting where there's an overwhelming avalanche of social info and background sensory stuff. One quiet friend is a blessing. We also play differently, not worse - we play alongside others. And can find it very very scary if someone moves or touches our stuff (brain design reason for this), so a friend who is willing to play 'our way' is a huge relief. We can then learn 'their way' when we're not panicked about what they're doing.

You can asking on Yahoo ABA UK group
Or I'd suggest posting a thread that says ABA in Kent in the title to get more responses
Autism Partnership (we use their Leeds office) have staff in London but I don't know if they cover Kent. They will do as much or as little as you want.
Our only commitment (we won funding from the LA at Tribunal) is to process the invoices and be in when the staff come.