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Son 3 years Moderate ASD - what can I do now? ABA? Services taking ages.

(10 Posts)
Bananasinpyjamas1 Thu 19-Nov-15 10:57:55

Hi, My son has had an ADOS assessment which showed Moderate ASD traits, filled in a lot of forms, Q Chat (score 52), his language is delayed, no sentences, shouts at people if they say hello, has a meltdown if we walk a different route, leads me to and puts my hand on things he wants. Obsessed with numbers and alphabet.

I've seen PHN and the SALT got me to apply for an assessment of need and referred to the early intervention team.

So far though, I've received no help or a plan, and have heard it could take AGES, months even, to be assessed properly, then given 'treatment' which may only be a few SALT and OT sessions etc.

Manwhile, my son seems to be falling further and further behind.

But where should I start? What can I expect? Should I get some books, youtube, and just start doing ABA myself with my child?

StarfrightMcFangsie Thu 19-Nov-15 15:21:51

Try this! It is well respected.

Bananasinpyjamas1 Thu 19-Nov-15 21:33:11

Thank you star I'll look into that.

AgnesDiPesto Fri 20-Nov-15 08:47:44

Apply now for EHC Plan (see ipsea). council can only refuse to assess if they know all your childs needs and that they are being fully met. you might get turned down and have to appeal but it means there is a legal timeframe and stops things drifting.
if you have to appeal you can ask the tribunal to expedite the hearing.
If there is no threat of tribunal then there is no incentive for the local authority to get on with it. The duty to meet your childs needs falls on Council as Education Authority - health have no legal duties to provide anything. SLT or OT would be seen as educational provision.
He sounds very much like my son (still obsessed with numbers at 8 - he now knows times tables up to 30!). We do ABA and I would recommend that too. You are right not to rely on local services
I found my son was considered too able (due to the letters and numbers thing) to meet criteria for special school or learning disability services - but he was far too autistic and language impaired for mainstream, so he falls in gap between the two.
He has outside ABA provider that goes into mainstream school with him and is the only way mainstream can work for him.
We had a horrible 2 year fight for ABA (2 appeals, 1 hearing) but it was worth it as he has had 35 hours a week ABA, 48 weeks for past 5 years.
Some areas have units attached to mainstream for children who fall in middle band. Few areas provide well for children with normal IQ but who have moderate to severe autism. Councils tend to argue their IQ makes them high functioning when they are nothing of the sort as learning in isolated areas of interest doesn't translate to learning functional useful skills.
We used an ABA provider that trained and supervised us until we were able to win funding at tribunal.
Look at Caudwell Children - they will give a grant to help you set up ABA programme.
Apply for DLA etc and use that to fund some ongoing supervision.

AngelicaM Fri 20-Nov-15 10:41:25

My son is 3 also, ASD, severe receptive language issues, no speech. I have pushed since he was 18 months, had a private DX and then a really positive experience with NHS Paed that was surprising with a quick DX. We started self funded ( maybe if you could a manage to employ a consultant for minimal hours and tutor yourself?!) ABA three months ago and he's making really strong progress, no miracles (and no matter how much you tell yourself there are none, I think you still hope a little!) but really solid gains in joint attention etc. Meanwhile I finally got my 'course' of SALT come through and it consisted of two sessions of barely 30 minutes and I could've wept with what an utter waste of time it was and for the fact that there are people who wait and wait for these sessions in the hope they will be of use and they really aren't. So I guess I just want to say push on with whatever you think might work for you both, for us it has been ABA, and I'd recommend it, but you are so right to want to take the initiative, no one else will and the next two years are crucial, don't let them waste your time!! Good luck x

anya1985 Fri 20-Nov-15 11:11:04

It's sad how we have to fight for the so little government funded groups that have very long waiting lists. My son is in mainstream school, doing well academically but very behind in social skills and interaction. He has no extra support at school at the moment. I have invested in social skills groups and last week took him to see an ABA provider who is going to implement a part time ABA course at school for him. All this is funded out of my own pocket as the LA is bloody useless only prioritising the more 'severe' cases due to funding cuts. I can thankfully afford it I really feel for families that lack the funding and knowledge it's very sad

amunt Fri 20-Nov-15 13:48:55

So true anya1985. Our son continues to make incredible progress with ABA, but we're going to have to give it up. Btw, glad to hear you got a provider in the end.

Bananasinpyjamas1 Fri 20-Nov-15 14:36:12

Wow, I can't tell you how grateful I am for your responses. I had flagged up issues at age 2, but as he was reading numbers and letters and everyone said he looked fine, eye contact etc, that I waited and now I wish I'd acted sooner. Everything takes so long! Even getting an ADOS done privately took a few months to set up and get a report.

I would like to start doing an ABA with him, tailored to what he needs, but as he hasn't even 'officially' been diagnosed it is unlikely I'll get that paid for yet. I have also been encouraging his numbers and reading as he loves it.

anya1985 Fri 20-Nov-15 14:42:54

Yeh I got in contact with autism partnership their waiting list was so long in the end, so I've gone with aba Acton it's local I live in Ealing.

Bananas in pyjamas me too I started to think something wasn't quite right around two and all those close to me thought I was over reacting! My son is four and a half now and was diagnosed six months ago so it's good to start the process ASAP.

In our borough the whole process took six months not that long really, good luck

AngelicaM Fri 20-Nov-15 15:22:26

Someone might have better info but I think it's the case everywhere that you'll have to start ABA self funded, or doing yourself (which I think must be very tough without at least a consultant) and then you gather up evidence of its progress to apply for funded ABA through a EHCP plan but the road is long and it's unlikely to be easy, but lots of people do get funded on programmes but depends on where you live. Have you joined the ABA Yahoo Group? Probably a good start to see how the process works and learn about how to approach funding.

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