The progress reports said he was compliant with their goals and collecting stars on their charts.
It looked like he was dead inside. Just following directions because he has to.
That is what I saw at the same time, and for a long time I could not make the two things fit together. Now I think they fit perfectly, and that is the problem.
Good behaviour and shutting down look identical on paper
A child who is calm, cooperative and doing what they are told scores well on almost any behavioural measure. So does a child who has given up.
From the outside these can be indistinguishable. The difference is on the inside, and it does not appear in a data sheet, because a data sheet records what a child did rather than what it cost them to do it.
That is why my son’s reports kept improving through the period when things at home were falling apart. Nothing was malfunctioning. The measure was working exactly as designed, and what it was designed to measure was compliance.
What the research on autistic adults describes
I found this literature late, and I want to be careful with it, because it studies adults and my son was small.
In 2020, Raymaker and colleagues published a study in Autism in Adulthood defining autistic burnout as a syndrome resulting from chronic life stress and a mismatch between expectations and abilities without adequate support. They describe long-term exhaustion, typically three months or more, loss of skills the person previously had, and reduced tolerance for sensory input.
The participants identified masking, meaning suppressing autistic traits in order to appear less autistic, as a primary contributor. Recovery was associated with three things: acceptance from others, reduced demands, and being allowed to stop masking.
That study does not diagnose my son and I am not claiming it does. What it gave me was a framework I did not have: the possibility that holding it together in one setting is a cost being paid rather than a skill being displayed, and that the bill arrives somewhere else.
Why nobody caught it
It would be easy to say our clinic was not looking at the right outcomes. I do not think that is quite it either.
The wider evidence suggests the field has not been systematically looking. The 2023 BMJ review known as Project AIM, covering 252 studies and 13,304 children, states that adverse events were “poorly monitored, but possibly common,” and concludes that potential benefits cannot be weighed against potential harms because the monitoring and reporting were inadequate.
That is not a finding that these approaches cause harm. It is a finding that the checking has not been done. Which is why an empty harm column in your child’s file tells you nothing at all.
And when I did raise it, the answer was that this was normal, followed by a request that I ask insurance for more hours.
What I watch for now
None of these proves anything alone. Together they are worth taking seriously.
- Compliance that improved suddenly rather than gradually. Sudden cooperation can be resignation.
- A child who is markedly different in the session than an hour afterwards.
- Loss of things they could previously do, or stopping something they used to enjoy.
- Reduced tolerance for noise, light or crowds compared with six months ago.
- Flatness. Not distress, which is visible, but the absence of the objections they used to make.
- Fear that transfers to new people or places who have done nothing to earn it.
That last one is what finally convinced me. When I told my son we were going to see a new provider, he cried and stayed frightened until he had been there long enough to understand it was different. The fear had generalised. Whatever else had been learned, he had learned that a room with an adult and some toys is a place where things are done to you.
What helps
The Raymaker study points at reduced demands, acceptance, and being allowed to unmask. In practice, for us, that meant fewer hours, an environment that cost him less to be in, and adults who adjusted to him rather than requiring the adjustment to run one way.
I want to be honest about the size of it. Within about four weeks I saw more confidence, better impulse control, and he invited another child to play. Not a transformation. But it was his, rather than something he had been trained to produce.
One thing worth saying plainly
If your child has become easier to manage and you feel uneasy rather than relieved, that instinct is worth listening to. Easier is not the same as better, and you are not being ungrateful for noticing the difference.
Ask what is being measured. In our case the answer was how well he did what he was told, and by that measure he was doing very well indeed.