ABA - Child Autism UK/UK YAP/Autism Partnership or Small Steps

[Elif100]

Hi,

My DD who is almost 4 is on the pathway to being Dx with ASD. We've been a hard journey this year coming to terms with this reality as we have been in denial for some time. We've reached the point now where we have a great preschool place organised for Sept entry who are organising some 1-1 ISEY funded hours. However we dont believe this will help her sufficiently in areas she is finding challenging. She was almost non-verbal last year and has now been using single words confidently, using short phrases and does generally imitate quite well. This is all amazing progress for us, however she still has many sensory challenges which affect her daily life and she is still wearing pull-up and have alot of echolalic speech. We've been looking at the option of doing a home ABA programme and I have been in contact with Child Autism UK/UK YAP/Autism Partnership and Small Steps. Thankfully they do offer the kind of home program we are looking for but nearly all suggest that my daughter should have minimal attendance at preschool. For various reasons, this isnt going to be possible, we will need her to attend for 5 mornings in september. Soo, my question is: has anyone worked with or would recommend any of the providers named above? and has anyone run part-time ABA programme with good results? Any advice would be appreciated. Sorry for the long post and thanks for reading x

@LightTripper the ABA therapy you are describing is indeed what I for one am looking for for my DS. I think the temperature of debate around ABA could be taken down several notches if it was discussed simply a method of teaching, but can occur in lots of different forms because it's the methodology we're talking about, not a specific programme.

The frustrating thing is that there are a range of what sound like really positive, play-based approaches that can help children with or without an ASD diagnosis fall under the heading of 'ABA'. I am currently reading a book on the Early Start Denver Model to help my son better engage in ways that will build his receptive language, and all I'm reading about is how to get down to his level, join in with play that he enjoys, and try to build in bit by bit language and communication skills in that play. I'm not focusing on stims, forcing eye contact, and certainly not punishing him, and back off if he's not in the mood.

But because ABA is talked about in terms of shock therapy, gay conversion therapy, PTSD and Nazis, I'm wary of bringing this up to his nursery in case they've got a negative, preconceived idea of what it entails. It makes me wonder if a simple name change would be enough, because the phrase ABA therapy seems to send some people straight to the most extreme, and from what I understand, outdated version of what is actually involved.

I actually think it's very sensible to just talk to nursery about the practicalities of how you would like your son to be supported: there's no need to bring divisive terminologies into it.

Although I am quite glad for the heated debate in some sense, as I can see that I might have done harm if I had dived into any kind of "therapies" or types of support without better understanding the harm I might unwittingly do. So hopefully some light comes from the arguments, and not just heat. It's definitely worth reading the experiences of autistic people who went through ABA therapy as children - I found that very enlightening and helpful in supporting my own daughter, even if it was often uncomfortable.

The reality is probably all parents do some harm and somewhat screw their children up. But it's clear you are doing a lot of research and trying to avoid that. I do think reading some of the autistic voices critical of ABA therapy is an important part of our education as parents if we are thinking of going down that route. I find the Neuroclastic website good for this. E.g. there is an article there from a parent which captures materials from ABA providers (and her own views in italics so you can see which are which), and another from a BCBA explaining how she thinks she did harm, and how she thinks autism support needs to develop, which I found really interesting - but there are many more. Just being aware of what things like pairing, discrete trial training, planned ignoring, etc. are means you can avoid them if you think they do harm (which I do), while still accessing support for your child to learn new skills if you think that's necessary (which I also do).

It also helps you to be alert for things along the way. E.g. after a period using stickers as rewards (which lost its motivational power quite quickly!) we just used praise. But I've noticed my DD often doesn't really enjoy praise, and I wonder if that was because we overdid it, or praised her for things she felt uncomfortable doing? I think all the supports we gave worked best when we were supporting her to do things that she was already interested in doing - either by giving her a bit of support and encouragement if she was just lacking in confidence, breaking it down into more manageable steps if she was lacking in skills, or by taking away stressors in the environment that might have made it harder for her (e.g. noise, lots of people watching, lots of other things going on).

Everything gets easier as your kid gets older and can communicate more - whether verbally or some other way. Just by trying things and seeing what helps you can learn a lot about how your child learns, particularly if you keep your mind open to different viewpoints.

Hi @Rosebud100, sorry - I missed your reply. I do think there is a real lack of support and understanding. In my dream world everyone who works with children would learn something about these methods to scaffold interactions and break things into little steps and safe environments that are not too overwhelming. If your ABA person can help with that, that sounds good to me.

A lot of the ABA you read about in the US seems to happen behind closed doors - either in a clinic or 1:1 with a child and technician - neither seems particularly healthy - much better for any kind of therapist to be working with other professionals (e.g. nursery staff) and parents.

I also agree @Scratchybaby that a lot of these play based approaches could help a much wider range of children than just those with a diagnosable neurodivergence. We're all different - and training professionals to recognise that and work with those differences would make the world better for all kids not just ours. There's a nice video about autistic women (from "Iris" if you want to Google it) where one of the women says something like "we are the canaries in the coalmine". Autistic people may suffer more in unhealthy environments - but most kids would thrive better if we got rid of some of the unnecessary stressors in our schools in terms of lighting, sounds, social pressures, etc.