Missing The Point

So let’s talk about the two, interconnected, obligatory buzzwords in the “autistic community” today: “neurodiversity,” and “cure”-specifically, a “cure” for autism.  Also addressed will be the intersection between social and medical models of dis/ability.  All of this is the cause of a lot of unnecessary division.  Hopefully by clarifying what these words mean, some confusion and discord can be alleviated.

Let’s get started.

I believe in honoring the experiences and communiques of neurodiverse people, from those with NLD to those with schizophrenia and yes, those with an ASD.  “Nothing about us, without us!” That’s called “neurodiversity”, which properly defined is the radical belief that the voices of the dis/abled and/or differently-brained are worth listening to, as are the voices of all who experience inequality and an inaccessible society, who experience suffering and harm.  “Neurodiversity” is a subset of a larger conversation of dis/ability rights—discourse centered around the radical notion that human rights extend to everyone, even the “profoundly disabled”, and the associated questions and challenges of accessibility, equality, and human diversity.

“Cure” should never even enter the conversation.

Now, don’t get me wrong.  Injury, dysfunction, and disease are a huge part of dis/ability, as is the constant quest to make the affected individual’s body more functional.  (This is the part where I look at different models of dis/ability.)  Taking insulin for diabetes and Zoloft for anxiety, laser surgery for eye sight and maybe someday TMS for social problems is all the same.  “Cure” or treatment here is a nonissue, because the focus is on improving functionality for the individual, to their individual standards and for their individual benefit, analogous to lifting weights in a gym or pursuing psychoanalysis.

This might look like chemotherapy, or stem-cell therapy for a spinal cord injury.  It might look like psychiatric medications, or biofeedback.  A Dynavox.  A wheelchair.

It should never look like the fundamental, physical erasure of a person or their identity.  Just the opposite–it should allow the individual more freedom of choice, expression, and participation.  It should look different for everyone.  It should be determined by the affected individual.  It should never come at the cost of equality, accessibility, autonomy, or self determination.  Rather, it should serve to further these human rights.

But when people talk about a “cure,” for autism, the conversation becomes focused on the synaptic and communicative impairments and ways to “fix” them as though autism were a cold or a broken bone and not an entirely different way of communication and sensory processing. It becomes perfectly acceptable to spend forty hours a week in intensive behavioral reprogramming and undergo dangerous quasi-medical procedures all in the name of “normalization.”  All of the effort is expended getting an individual to interact with the world in a semi-normative way, which is deemed “functional,” and no comparable efforts are made towards improving accessibility and equality for everyone.  Essentially, it is pretended that autism is solely a medical issue, and not also an issue of social justice.

Broad talk of “curing” dis/abilities, rendering them purely medical conditions isolated from personal and social contexts (the medical model), misses the point.  The point is that everyone deserves accessibility, equality, autonomy, and self-determination, and dis/abled people are regularly denied these things, by virtue of living in marginalized bodies.  A “cure” will make the body more standard, but it won’t address the underlying issues of marginalization.  The point should never be how to “fix” or “normalize” someone.  The point of it all should be honoring the dis/abled person’s experience and ensuring accessibility, equality, autonomy, and self-determination for everyone , both via personal and bodily modifications as well as by accommodations and an emphasis on accessibility, community, and equality(the social model).  The issue of dis/ability rights is never going to go away–or, at least, the issues of conformity, convenience, harm, suffering, accessibility, and equality are never going to go away.  And society needs to learn to deal with this.

Hopefully that clarified a few things, such as what neurodiversity means, why many autistics are against a cure, and how dis/ability is theoretically modeled. Keep this reference guide with you.

Originally published at Autism Speaking.

on 07/19/10 in Autism, featured | 3 Comments | Read More

Comments (3)


  1. jonathan says:

    As a person with an autism spectrum disorder, your post clarified nothing. It only muddied the issues further. You are quite vague as to what these rights are for autism and how autism could be accommodated and how this can be accomplished and what possible benefits it could have.

    You have again, used the neurodiversity vagueness in trying to clarify these issues. You have done no better than anyone else who has written about it before. I still don’t understand what these rights are, how they are being denied to persons with autism or even what can be done.

    Your post reminds me of the old axiom, garbage in garbage out

  2. Julia Bascom says:

    Thank you for the feedback Jonathan.

    1. It was supposed to be a general post. It’s about foundational principles, not a list of every single thing relevant to autism ever. This explains the underlying philosophy behind my thought processes on autism, but the thoughts themselves. Those should come later. It seems logical to include the foundational post as a starting point, however.

    2. I am curious to see that you did not address any of the considerable specific content I did include, such as the examples of the different models of dis/ability, or the framework I built for considering a “cure”. Instead, you prefer to use the same tired attacks of “vagueness” and “garbage” to describe my work instead of engaging with the content.

    3. You have however provided me with an idea for my next post, regarding “hat these rights are, how they are being denied to persons with autism or even what can be done”. I can also see that I will need to clarify the usage of “accomodation”. Thank you for this.

  3. Gwen McKay says:

    Nice job with your new websites, Julia — looking good. :)

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