I
began working with children with autism back in 1995, and most of the
history of autism before the mid 2000s has been erased (enabling new
narratives to be presented and accepted) so I want to add some of it
back here. Bettelheim was a complete fraud and charlatan. He
fabricated any credentials and expertise he claimed to have, and wrote
his book "The Empty Fortress" based entirely on conjecture. Despite
this, his book and theory (the notorious "refrigerator mother" theory)
were unquestioningly accepted by mainstream medicine and for decades all
treatment of autism was based entirely on his "work"- no research or
independent inquiry was done at all. What this meant was that children
with autism and their mothers were sent to psychiatrists who interpreted
everything the child did as a sign of alienation by the mother (for
example, a child who had a stim of knocking on things was said to be
"knocking on his mother's emotions, asking to be let in"). No attempt
was made to try to understand the person with autism or help them or
teach them or ease their distress. The mothers were told that they had
caused their child's autism (remember that at this time, autism meant
the form that we now call "profound" or "level 3" autism only) and were
shunned. Often they were made to wait outside because they were told
they were so heinous for what they had done that they weren't worthy or
deserving of human treatment. There were times when a child died in an
accident (remember, we're talking about level 3 autism in a world with
zero accommodations or awareness) and the mothers were told that the
child had intentionally unalived themselves to get away from them.
There were mass self-unalivings of mothers at this time because society
trusted and believed what the doctors said without question (until
Bernie Rimland came along, who has also largely been erased, and who
finally did some research and created the beginnings of the concept of
autism we have now of it being a neurodevelopmental disorder), and the
weight of that blame and self-blame was more than many could cope with.
When
people say that the history of autism treatment is filled with "snake
oil salesmen" this began with western medicine. The word "quackery"
referring to doctors was first coined to describe AMA doctors when they
were new on the scene. They never acknowledged or apologized for the
harm they did by embracing Bettelheim with such anti-scientific fervor.
"Bettelheiming" is much more than not being believed- it's being
scapegoated, bullied into silence, blame-shifted and victim-blamed and
it was often deadly. If you listen to what families of people with
Level 3 autism have been saying this past month, things haven't gotten
much better, only now it's parts of the autism community itself who have
been co-opted into this bullying. This is why history matters. This
is what can happen when it gets erased. This is the tip of the iceberg
of just the history of autism, let alone all the other history that has
been erased in America.
