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How did you know to start ABA?

(5 Posts)
jecheon Mon 25-Jul-11 19:20:40

Hi I am new to this forum but have been lurking for a while.

My boy is just turned three. He has a speech and language delay with understanding problems as well. He also has some behavioral issues.

He is due another assessment by SALT in the beginning of August, and due for his second appointment with the pediatrician in the beginning of Sept. Portage have guessed at a diagnosis of aspergers but who knows?

How did you know what therapies to put in place? How did you find out about them?

Any advice would be great x

sickofsocalledexperts Mon 25-Jul-11 20:02:22

Another mum told me about aba and i am so grateful she did. The portage and salt were fun but ineffective for my boy. Aba was also fun but showed immediate results for his speech and behaviours. It has the best record on early interventions for autism (see the impartial website researchautism.net). I would highly recommend, even just a few hours a week or whatever you can get, and also then you learn the techniques yourself. At this age, every month counts so I would definitely not wait around for the state to help, as they won't do enough.

graciousenid Mon 25-Jul-11 20:57:20

Moondog, SOSCE (sickofsocalledexperts smile ), Silverfrog, Electra & Pipinjo convinced me to look at ABA & I will be eternally grateful to them.

We'd started a number of interventions; some useful (Hanen (thanks Lingle) & Makaton), many less so (sensory diet (from BIBIC), PECS (NHS SALT), portage (not a success in our case)). I'd heard about ABA but everything I saw online said you have to do 30-40 hours a week & that'll cost £30,000/year & if you can't do that then there's no point, and everything I heard about it irl (from SALT, portage, paed, SN teacher) was incredibly negative & misinformed.

It was Moondog saying it is the only evidence based autism intervention & SOSCE sharing how it helped her ds talk that convinced me (weeks of sleepless night obsessively researching it) we had to get a programme going somehow. Silverfrog, Electra & Pipinjo showed me that it would be possible to actually do it - with very little money, very little time, no space, and other small children to worry about.

Thank god for MN - I've not seen another UK based ASD/sn support forum that have the first clue about ABA (vast majority of people have never even heard of it).

dolfrog Mon 25-Jul-11 21:00:31

Research Autism website at researchautism.net

Agnesdipesto Mon 25-Jul-11 21:16:58

I read up on ABA, realised it had the most evidence, but felt it was too expensive for us and wasted 6 months trying to get into the local special school nursery. When we were turned down even for a statutory assessment I realised it was going to take at least 6-12 months to get any provision in place. In the 6 months we had been already been waiting we had had only 2 SALT visits a month apart and then nothing for 4 months, no portage, and just one visit to nursery to 'tide them over' until the autism outreach staff came back from their extended summer holidays. I couldn't see it getting any better. I quizzed all the medics and they all said not to put my hopes on outreach, it probably wouldn't be enough for DS. He needed specialist teaching.
DS had regressed and lost almost all his speech, he went from short phrases to having only 2 functional words. No-one in Education seemed to regard this huge loss of skills as something which needed urgent attention
The turning point came when I found DS one morning in his cot with huge volumes of congealed vomit.
He had never called out, just lay there all night being sick.
Thats when I decided f**k the budget, I wasn't going to leave my son without any means of communication for the rest of his life.
We started ABA and he started using single words again within days.
It is hard hard work (for the adults, its fun for the child) - but systematic, well thought out, individualised and they never ever give up on teaching a skill until he has got it.
I am so glad I did not waste more time - when we did get the outreach staff they showed up once a term, gave some very generic advice most of which was not appropriate for DS but of the 'all children with autism need x' variety. He had SALT, outreach and fulltime 1:1 in mainstream for a year and never met a single target - whereas at home he has made progress week in week out.
For the first 6 months we did all the ABA ourselves under the guidance of a supervisor. Then we paid for 6 hours a week and did 15 ourselves until we managed to get a Tribunal to order the LA to fund it.

I think for higher functioning children the options are limited. Some areas will have good units or special schools, but most will just plonk children in mainstream. Ask around to see whats available. All the speech and ASD units here have been closed, so it was mainstream or ABA only for us.

We decided to trial ABA for 3 months. Evidence shows that gains in the first 3 months are a good indicator of outcome with ABA. The children who do the best with it tend to have a boost when they start. So if it seems a bit scary to commit long term, perhaps just do 3 months and then reassess. We were so pleased with the progress in the first 3 weeks, we have never looked back.

He is now going into mainstream school (part-time) as part of his ABA programme. Its like taking a special school with him each day. So he still gets all the social opportunities etc and the aim is for him to learn skills so he can hopefully access learning in a more typical way in a few years time.

Try and go and see some ABA. A parent offered this chance to us early on and I still kick myself I went down so many blind alleys before we pursued it.

What I would say about Aspergers is that ABA will work on the nuances eg of social rules, conversation etc which probably would never get addressed in a mainstream setting (even if they had people with the skills to teach these skills which they usually don't). Starting so early is also a good idea.

You don't have to do ABA in isolation either. DS kept going to nursery and getting the 'usual' provision and that gave us the opportunity to compare and contrast (as well as the tribunal the chance to see one worked and one didn't).

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