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Dx of ASD this week. Now what?

(17 Posts)
SOTIRIA Sat 08-Oct-11 20:08:33

After 3 years of assessments and appointments our DS has finally been given a DX of ASD. What can I do now? What treatments, therapies or techniques can help? I need to know what I can ask for. What is ABA?

applied behaviour(al) analysis

if you google that, you will get lots of info. It's one of the most popular

hmm sorry. cut off in my prime

systems for 'treating' autism. Or more correctly, for helping children with autism learn vital skills

MangoMonster Sat 08-Oct-11 20:14:44

I've just started ABA with my ds who has been recently dx'd. Feel free to inbox me for a chat.

bialystockandbloom Sat 08-Oct-11 20:22:21

Sorry to hear your news. I hope you're feeling ok.

I'd absolutely recommend ABA in some form or another too (the type of programme and targets would depend on your ds's abilities, skills etc). But sadly you won't get it as a matter of course! In fact <<harbinger of doom alert>> you have to fuss and fight for most support in any case (eg ds was dx a year ago and we've had no SALT whatsoever) - but this differs according to area/LA.

Welcome to the sn board. There is a huge amount of knowledge, advice and support to be found here, so you will probably learn more than as much from people here than you will from the 'professionals'. smile

IndigoBell Sat 08-Oct-11 20:44:05

There's a lot of therapy ideas on this thread: Top 3 treatments for ASD

How old is your child?

How severe / mild is he?

What symptoms of ASD are causing you / him the most problems?

StarlightMcKenzie Sat 08-Oct-11 21:14:49

Why don't you start a thread with one or two specific concerns that you would like help with for your ds and see what posters come up with.

That is where this board can be at it's best and help you to put in context some of the different treatments/therapies.

You'll then get a feel for what you instinctively think will work for your family and your ds and you'll get a starting place.

SOTIRIA Sat 08-Oct-11 22:05:12

Thanks Indigobell my Ds is 6. He is quite good socially and verbally but has problems in regulating emotions, with sensory seeking and high anxiety.

I think Starlight has a good idea to start a thread about concerns but I'm not sure about what is on offer to help that I can try to get into statement or ask CAMHS, pead, EP or OT about.

IndigoBell Sun 09-Oct-11 07:47:19

For the problems you have listed I would be looking at retained reflex therapy rather than ABA.

You dont get it in a statement. You have to pay for it yourself.

Retaining the Moro reflex causes anxiety. And getting rid of it has made a huge difference to my DS, and also Becaroos and Bluesharks and others.

RRT also helps with the sensory seeking stuff.

And once you've got rid of the sensory seeking stuff and anxiety he'll be able to manage his emotions much better.

MangoMonster Sun 09-Oct-11 09:06:12

The national autistic society website has a good overview of a wide range of therapies, worth a look as a starting point.

StarlightMcKenzie Sun 09-Oct-11 09:54:50

SOTIRIA I would get an independent SALT to look at his verbal and social skills. Sometimes children with ASD can look like they have no problems on the surface but underneath there are gaping holes which will give them problems later on if not plugged.

SOTIRIA Sun 09-Oct-11 19:52:41

Thanks for all replies. The trick seems to be to know as much as you can so that the professionals can't fob you off. It's survival of the fittest parent not the fittest child.

IndigoBell, I've never heard of this but it sounds like it might be very helpful for my Ds.

MangoMonster, I'll check out the NAS website for more ideas. The CAMHS said that they were not willing to offer anything, initially and we asked for a referral to the psychiatrist so we hope for more from her.

Starlight, Ds does have some unusual things that he says sometimes but we didn't think about it as it seems a relative strength. I'll ask the paed for a referral to SALT.

SNM Mon 10-Oct-11 20:04:42

I would also recommend taking some time just to digest the diagnosis and what it means for your family. The NAS has Earlybird and Earlybird Plus courses for parents. These are fantastic - look on the NAS website for details. We learned so much from this and met other parents.

MangoMonster Mon 10-Oct-11 20:47:56

sotiria, sorry I haven't got back to you about ABA, been thinking what I'm doing might not be relevant to a dc who is 6. Please post a thread to get others advice which is age specific and feel free to contact me about anything you think I can help with.

There's lots of people on here who know more about ABA, I'm finding it's really going well for my DS.

Hope you're doing well. Feel free to inbox me if you need to talk.

SOTIRIA Wed 12-Oct-11 23:27:32

Thanks for the posts. i'd like to take some positive action now that we have a Dx. i feel that ds can have his symptoms alleviated if not cured. I'd like to make his life as happy as possible. CAMHS didn't seem to offer us anything so far but I'm hoping that this will change. I'm also looking at local groups who offer services for ASD children so that we can go to things without worrying about outbursts of difficult behaviour.

StarlightMcKenzie Thu 13-Oct-11 13:44:23

SOTIRA,

You can abolutely start an ABA programme for a child of any age. The trouble is that once they have become school age, trying to make it work with the school and LA can be complex and difficult.

SOTIRIA Sat 15-Oct-11 23:03:47

Starlight, Perhaps I could try to do some ABA myself. His speech is ok ABA may help with aggression, anxiety and social issues. We have started some therapy with a physiotherapist who helps children with DCD and sensory issues. I have read on another thread that it is possibly not a good idea to start 2 therapies together so I may give this one some time first.

Any thoughts?

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