I want to be careful with this post, because the version of it I see everywhere online is essentially an advertisement. Parent leaves one thing, tries another, child transforms, the end. That is not what happened to us and I do not think it happens to many people.
Here is the honest version.
The first appointment
He cried on the way. I had told him we were seeing someone new, and he assumed it would be the same as ABA. He stayed frightened until he had been in the room long enough to work out that it was not.
Two things happened that had not happened in years. The occupational therapist and the clinical director both sat down and explained to me what they were doing and why. And instead of starting from a list of targets, they let him play with different toys and games and watched what he actually went toward.
That was the assessment. Watching what he was drawn to.
He wanted to come back the next day. He did not want to wait a week. This is the child who had been refusing to get in the car and suggesting we go to the park instead.
What actually changed, and how long it took
About four weeks in, I noticed he seemed more confident. His impulse control was better. One afternoon he invited another child to play with him, which he had not done before.
That is the whole list. It was not a profound change.
I am saying that plainly because I think the modesty is the point. It was more than I had seen across many hours of the other thing, and it was still small and slow. If you are hoping a provider switch will resolve everything by Christmas, I would rather tell you now that ours did not.
I should also be clear that this is one child in one family. It is not evidence, and I would not want anyone to make a decision about their own child on the strength of my four weeks.
What was actually different, underneath
For a long time I described this as ABA versus OT, as though the discipline was the variable. I no longer think that is right, and I have met parents with good ABA providers and parents with poor experiences of OT and speech.
Three things were different, and none of them are the name of a profession.
- Someone qualified was present. At the previous clinic there was nobody to talk to and the clinical director was never there. Here, the person who designed the plan was in the building and would explain it.
- Sessions started from him. What he gravitated toward set the direction, rather than his performance against a predetermined target list.
- The family was in scope. They treated us as part of the picture rather than treating my son as the unit of work and me as the person who dropped him off.
You can ask about all three before you sign anything, in any discipline.
What we changed at home
A weighted blanket helped. So did vibrating pens and vibrating books, and a swivel chair with a full cover on it, which we used to make a cosy corner he could take himself off to.
I am listing those without much enthusiasm, because the items are not really the point. Every one of those suggestions came from his own therapy team, who had assessed him and knew what he was drawn to and what he could not tolerate. That is the difference between them and the things I had previously bought off internet lists.
So the transferable version is not “buy these three things”. It is: ask your child’s OT what would suit your child specifically, and ask them to explain why. A good one will have an answer, and it will not be the same answer they gave the last family.
And what was a complete waste of money
Stickers. Reward charts were recommended constantly, and I bought so many of them. I also installed apps on my phone to count stars.
A waste of time. That was not what he needed.
It took me a while to see the shape of what I had been doing. His progress reports scored him on how many stars he was collecting on their charts, and here I was at home buying more charts and more stickers to run the same system after hours. The one thing that generalised out of that clinic was the reward scaffolding, without any of the understanding underneath it. I have written about that measurement problem in what progress reports actually measure.
What the research does and does not support
I looked for evidence after the fact, and I want to represent it accurately rather than pick the parts that flatter my decision.
The 2023 BMJ review known as Project AIM pooled 252 studies and 13,304 children. Under its strictest analysis, excluding caregiver and teacher reported outcomes and studies at high risk of detection bias, one category retained a significant effect on autism characteristics: naturalistic developmental behavioral interventions, at a modest effect size. Those are approaches built around play, natural settings and the child’s own initiations, described in Schreibman and colleagues, 2015.
That is genuine support for child-led, play-based, naturalistic approaches. It is not a demonstration that they are dramatically effective, and it is not a finding about occupational therapy or speech therapy specifically. A modest effect that survives a strict analysis is a real thing, and it is also a modest effect.
The same body of work found that adverse events across this literature were “poorly monitored, but possibly common,” which applies to all of it and not only to the approaches I moved away from.
One idea that reframed things for me
The double empathy problem, developed by Damian Milton, holds that the communication difficulties between autistic and non-autistic people run in both directions. It is not only that an autistic person struggles to read neurotypical norms. Non-autistic people are also poor at reading autistic ones.
If that is right, then a plan built entirely around teaching a child to produce behaviour that non-autistic adults find legible is solving half a problem. It also explained something I had noticed and could not articulate: the sessions that went well were the ones where the adult adjusted to my son, not the ones where he was successfully adjusting to the adult.
If you are considering a change
You do not have to make a decision this week, and you do not have to stop anything to start asking better questions about it.
- Ask any prospective provider how they assess. If the answer is a standard target list rather than an observation of your child, you have learned something.
- Ask who supervises the hours and how much.
- Ask what they would change if your child were distressed.
- Ask what they would recommend if coverage were not a factor.
- Ask whether you can watch a session.
And if cost is the thing standing in the way, it may be less fixed than it looks. There are routes most families are never told about, and I have written up what I learned about paying for therapy your insurance will not approve.
Whatever you choose, the measure I trust most now is not on any report. It is whether my child wants to go back.