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I debated back and forth about whether or not to say anything about this paper when I saw it go up today. Being #ActuallyAutistic and being a researcher of autism can be complicated. There are pro's and con's. The hardest thing is when someone publishes something that stings. https://twitter.com/journalautism/status/1355188202298990594
In the study, the authors investigate the concept of health in families of autistic kids. The authors interviewed families, with the autistic children and non-autistic siblings present, to hear about things like how autism can impact on the health of a family.
Ignoring all of the PFL, and the fact that the study was not designed alongside the community, the very premise of the study breaks my heart. Autistic children grow up with an internalised feeling of being burdensome, the cause of family stress, and "a problem".
I read this paper both as an academic, and an autistic, and in that intersection. I felt the pain accutely of what it is like when a family discusses you in terms of being a form of stress, a source of anxiety, or as something that damages the health of the family unit.
A lot of #ActuallyAutistic know this feeling because they have heard the conversations. They heard it all. And although in the paper they say "autism" was a stress, autism only exists inside a person. Autism as an a-morphous force does not exist. Autism is only ever a person.
My heart literally hurts reading this. The biggest con of being an insider to research is when things like this pop up on my timeline, my feed, or land on my desk, and I need to process not only the academic arguments being made, but also the personal hurt and history.
Autistic people grow up to think they are broken, bad, a burden, and a source of stress. The way we talk about autism in families, friendships, society, research, and the media is why. Hearing how stressful it is that we exist sticks and becomes internalised.
I imagined for a minute being that child or teenager, and being privy to that conversation in front of strangers in our home, and it makes me feel small, powerless, and anxious. It made me feel lonely too. I can't imagine anyone feeling great at the end of this process.
Its become harder to say anything the further up the ladder I have gotten as a researcher, because there is an expectation that I shouldn't rock the boat to much. But I think it is important to talk about how research is recieved both by autistic people and autistic researchers.
Talking about family health etc is really important. And so is exploring family dynamics in families with autistic children. I am not saying we shouldn't explore this. We need to. But I worry that if I can read this and internalise it, then autistic kids don't stand a chance.
