Autism, Ethics and the Good Life: disorder or identity?

Sandy Starr is an adult who was diagnosed with Aspergers Syndrome in his teens. His work for the Progress Educational Trust, a registered charity that works in the field of genetics, assisted conception, embryo/stem cell research and related areas, includes the genetic aspects of autism. He addressed the question

Is autism a disorder? Is autism an identity?
Autism is a disorder with its roots in psychopathology.
The idea that autism is not a disorder is quite recent and seems to derive from three trends.
Expanding the range of what constitutes autism makes the concept of autism less coherent and less useful. This has happened with other psychiatric disorders as well.
Redefining normal has made us lose sight of what it means to be a functioning social being.
There is an assumption that identifying negative aspects of autism entails a moral judgement on the autistic person rather than a medical judgement.

 

Consequences
There have been changes to the law on disability rights and benefit entitlement.
People have been unfairly taken off benefits.
But broadly defined clinical categories are not trusted by government. We need to re-establish boundaries.
We need to defend the pejorative medical judgement that autism is a pathology with disabling aspects.
It is important to seperate moral and medical judgements. Ipseity is more than your health.
Mental health is part of ipseity.
Autism is part of mental health.
Autism exists as a medical condition.
Can it also be an identity.

 

Conclusion
Treating autism as a difference which is valued for itself leads to some interesting ramifications.
In particular should identity affect our judgement?
If I as an autistic person say something about autism should I be believed because of who I am?
That is a kind of ad hominem in reverse.
I deserve to be challenged on the strength of my ideas, not upon the strength of who I am.

In the discussion that followed I pointed out that some commentators had made moral judgements in the other direction. Barnbaum cites Hobson, who argues that without empathy one cannot be part of the moral community. Humanity is not about essential intrinsic qualities which we must possess. It is created out of our relationships with other people. We become persons when we recognize the personhood of others. If that ability is seriously impaired, as in autism, then that person cannot be considered to lead a fully human life.

Starr had an admirably pragmatic solution to the question. Once you are born you are part of the human race. No question about it. But this sidesteps the issue. What about those like Hobson who do question it? Perhaps people are asserting autism as identity in order to defend themselves against these pejorative moral judgements of autism?

I found his presentation stimulating and challenging. And Starr was right to ask whether, if he had not identified himself as autistic, it would have made a difference to how we received his arguments? Or as Murray might have put it, “What role had we individually and collectively assigned to Starr in the narratives of autism that were unfolding in the Royal Academy on World Autism Day?

4 thoughts on “Autism, Ethics and the Good Life: disorder or identity?

  1. Socrates

    There is a very nasty undertow within academic Ethics that leads to the evolution of creatures like Martha Nussbaum. The same undertow, almost always powered by highly privileged neurotypicals, gave us the recent post-natal abortion debate, played out so fraughtly in the national newspapers.

    It is enough for an old atheist like me to invoke God and the sanctity of all of his creation of Mankind. Sometimes the Ivory Towers need to be staked up with faggots and torched. They are not worthy by their own criteria, of membership of the Menschen Genossen

    Reply
    1. Mike Post author

      Socrates,
      what isyour particular objection to Nussbaum? I am not familiar with her work except as it is reported in Barnbaum.s book “The Ethics of Autism.”

      Reply
  2. Socrates

    I think I’m just citing Martha as a specific target in a generalised pop at a conversation about us, to which we’re not invited.

    I think I’ve grown fatigued and disengaged with these academic debates in the face of the Government’s targeting of the sick and disabled. Unfortunately my mind is consumed with fear of losing my meagre benefits and my home.

    I am however, still grateful that there are people like you and Larry Arnold to promote our case.

    Reply
  3. Tyler

    I think it really is a difference. To have a disability means to not be able to do something, it doesn’t mean incapable of doing anything. Everyone is not able to do something. It seems a lot of people born with what modern science calls Autism were very creative, they either didn’t care about thier social difficulties or were sad but did amazing stuff anyway in art science math music literature. Observing your ceiling fan is not a sign of stupidity, how many Americans these days have a clue how mechanical things work? Instead of letting these kids explore and make their own path they are increasingly isolated and treated as invalids with no opportunity for stimulation. Many are put in front of the TV watch stupid Disney movies all day. Not given a chance to develop one of the defining traits of Autisticnesss a good obsessive interest.

    Reply

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