This is going to be long, but hopefully useful. Just like you I crawled all over this board last year to try and piece it all together, so I am glad if I can pass some of what I have learn since then down.
Also, I perfectly understand that many parents aren't able to afford a full-time ABA programme for their children and this is not meant to discourage those who are able to do even a few hours of therapy a week.
- Considering my DS age and diagnosis, can I do, say, 21 hours per week instead of the recommended 35-40?
As I read through the original research when I was in your position last year, I noted that the intensity of the programme and the intensity of supervision (see below) were two out of four variables (IQ and age at intake being the other two) that were statistically significant for programme outcomes. Therefore, we have gone with the full time (37.5 hours a week) programme.
FYO, our DS was nearly four when we started and has a diagnosis of Autism (with higher than normal intelligence, although his language was disordered).
- Can he continue to attend nursery as usual (i.e. without an ABA tutor) for 2 mornings a week? He enjoys it and I'm not sure I want to rock the boat there for the few months remaining before summer hols then school.
He didn’t attend nursery at the time (in fact, trying to start him in nursery is what lead to the diagnosis), but given our experience, it was difficult to imagine how it would fit early on.
It is very important, in my view, particularly in the early days, that your child is treated consistently in all settings and the fact that his nursery staff is probably treating him as a ‘quirky’/’naughty’ child, for example, may be unhelpful.
For us, “learning to learn”, i.e. compliance, was the major skill he needed to gain to progress that took several months to achieve and we, as a family, thought that anything that was taking away from that goal was a distraction.
Having said that, we started nursery after NY (with our own shadows) and he is really enjoying it there (i.e. actually talks about going there and looks forward to it). He is still not engaging with his peers much, but has already charmed the adults working there and is very comfortable participating, listening to the stories, doing arts & crafts, etc. None of these would have been possible without our ABA team.
- What are the benefits of going through Peach? Is it the vetted and experienced Case Managers and access to their list of tutors?
We interviewed Peach (as well as other providers) and decided to go with UK Young Autism Project, not least because their full-time intensive programme comes fully staffed (the programme consultant, senior tutor plus two junior tutors). Each of our team has a relevant Masters degree and has been pre-vetted by UK YAP, for us that was a major advantage. Also, once you factor in the level of supervision (we have a weekly all parties meeting for 2.5 hours plus two sessions attended by the consultant, plus a monthly Director meeting) they actually become more competitive than a lot of indi providers, who will gladly match the level of supervision (at their standard daily rate).
- Who decides the day-to-day tasks for DS? If I employ someone with no experience, for example, I know they get training but do they report back to the Case Manager every evening and get told what to do the next day?
This is what the team meetings are for. The progress is measured, reviewed and discussed and everyone provides their input (including parents, as we also observe the behaviours and impact the priorities). The consultant (together with senior tutor) is then responsible for writing the programmes for the team to implement during the week; each programme deals with a specific area/skill/etc. Of course, the team continues to communicate through the week, as needed (and the consultant and senior tutor also do 'overlap' sessions where they test the consistency of the therapy).
- Is ABA suitable for improving speech, eating, the ability to play and the ability to concentrate (our main issues currently)?
Yes, yes, yes and yes. A lot of DS's language was repetitive and disordered and generally broken (mixed pronouns, etc.) when we started. He has improved significantly since since late August and about a month ago he finally started asking independent questions (a major breakthrough only a parent of a child with SN would understand!).
He had no imaginary play whatsoever on intake (ipad and puzzles only), and this has been a major area we wanted to bring out, so he has done a lot of imaginary play, scenarios, turn taking, character imitation, etc. I am not going to tell you that his play is now indistinguishable from a NT child, but he can pretend-play now, take turns, voice over and make up new scenarios with his characters, dress them up, etc. It’s a joy to watch.
His flexibility is significantly improved too, and that was another biggie for us (in general, rigidity is his trademark quality in common with a lot of other ASD children).
We left food out of it until recently, as even though he has a very limited diet, it’s actually not too bad from the nutritional standpoint and we are supplementing in those areas that needed addressing (Vitamin D3, zinc, magnesium, vitamin C, vitamin B12 and Omega-3). We have recently started on the food-specific programme, and early results are encouraging.
I can't truly comment on the ability to concentrate, as it may mean somewhat different things to different people. For us it was more a case of getting him to engage in things other than on his agenda, and yes, he can do that. He actually enjoys the table work that forms part of the programme and would come and ask me to do some of this with him on the weekends ("Daddy, let's do the opposites!" with flashcards :)).
- I'm a SAHM. What do I do when the tutor is with my DS? Do I listen in? Help out? Stay well out of it?
Our DS was extremely attached to my wife (I am a dad, btw), so she had to spend the first two months pretty much glued to him and the tutors. In her own words, it was the hardest period of her adult life, as he used every possible way of getting out of doing things now on his agenda and the boy can tantrum. He loves his tutors now and looks forward to doing “some nice work” as “he needs to learn” :)
She is SAHM too and is involved in some of the sessions, but finally has some time to do things on her own or around the house for the first time in four years. We don't formally do ABA sessions during the weekend, but we continue with a lot of the social and language elements of the programme regardless.