Nothing About Us Without Us

Diversity and Inclusion.

Integration.

Awareness vs. Acceptance.

Tolerance.

These buzz words often integrate into political conversation in all Civil Rights movements. They, indeed, pepper such a movement with in the Autism Community. Neurodiversity is a collective movement in which atypical neurological conditions are recognized and respected, not as a disease in need of a cure, but instead simply a natural variation in the human genome. While Autism is included in this Neurodiversity movement, it is joined by other neurological conditions such as ADHD, Dyslexia, Turrets, and others.

Neurodiversity was pioneered by Judy Singer, an Australian Autism Activist who is, herself, autistic. “The ‘Neurologically Different’ represents a new addition to the familiar political categories of class/gender/race and will augment the insights of social model of disability, “ Singer writes. In layman’s terms, those with autism are just like everyone else, only different.  The movement pushes that those differences should be celebrated as any other form of self-expression.  The idea is to promote support systems which allow autistic people to live as autistic people. Championing the idea of neurologically different people being able to receive the accommodations needed for success within society so they might live fulfilling lives as they are, the movement calls for those on the spectrum to rally under the banner Autistic and proud. Self-Advocating persons with autism are rebranding the Spectrum from a disorder and disease condition to a person with different wiring.

The fundamental conflict with Neurodiversity is the extreme diversity within the Spectrum itself. As a spectrum, the life experiences of the people living within it can be so very different. As you recall, if you have met one autistic person, you have met one autistic person. The “leveling” of an autistic person within this broad range is built on the amount of support and interventions needed.  A self-advocating person on the “mild” end of the spectrum is not representative of someone with the same diagnosis who finds themselves on the opposite end of the spectrum. And just like the post-modern ethos of disagreement, the debate is heated.

Within public policy, there is a need to pigeon-hole a problem into a proper funding and prevention context. If autism is a disease, policy would seek a cure. If autism is a disability, policy would decide accommodations. If autism is a gift of self-expression, then policy protects, but likely doesn’t offer remedy. The politics of autism becomes as complex as the condition itself. What pushes the Neurodiversity self-advocating autistic person is a desire for the world to accept them. This may come from a history of the world saying, we are normal, you need to assimilate. That assimilation may be impossible unless the world changes, so the Neurodiverse Movement is attempting to change the world.

As society has progressed and evolved, people with autism have been encouraged to fully integrate into society. Autism has been a named condition since 1943, however, whether it is because of living in an information age or the much-needed desertion of societal permission to hide those with disabilities, autism itself, and its frequency seems to be a relatively new phenomenon.  If you find yourself wondering where autism came from and why it seems so frequent now, it has less to do with it being new, and more to having a name and the push of integration.  As is the case of integration in all areas, often it is one sided. Integration in practice is two differences sharing the same space with equal opportunities and access. In reality, integration rarely looks like that model. Instead, there is one side that is considered the preferred “normal” and anyone different must integrate into that standard.  This unequal integration often leads to lack of education to one part of the population and resentment in the group who is being told to integrate, enforcing the responsibility and change lies only at their feet. It is understandable why some would balk at this idea.  Thomas Clements, an autistic man, writes on the Quillette blog, “I am somewhat tilted toward the neurodiversity position in certain respects. Like them, I believe autistic people deserve better accommodations at work and in the wider society. I also support those who promote the potential of different minds and the strengths they bring to companies…..What I don’t respect are the radical ideologues who consistently browbeat those who disagree with them and willfully ignore the real difficulties faced by a vast number of autistic people.” Further Clement states, “ (Autism) should never become another edgy identity label for people which is sadly what is happening in certain sections of the neurodiversity movement….This is quite clearly not a social justice or intersectional issue and to pretend otherwise is to be deeply dishonest. Autism this severe does in fact merit a lot of scientific investigation and potential treatments, not necessarily ‘cures,’ to mitigate dangerous and disturbing behaviors.”  This conclusion is in direct conflict with the more radical neurodiverse position of John Marble, political activist and person with autism, who states, “There is no such thing as severe autism, just as there is not such things as ‘severe homosexuality’ or ‘severe blackness.’  Marble clearly falls in the anti-cure, autistic and proud school of thought.

Maybe the best answer lies somewhere in the middle of the two extreme sides. In so many ways, people with autism are not different from neurotypical people. Dr. Whitney Loring explained how she once had a patient share this observation. “If you were walking down the hall of a high school you might see a group of neurotypical teenage girls listening to a friend share with great excitement the events of a dance. In her excitement, her hands would be moving and shaking as she told the story. To everyone listening her moving her hands in excitement does not appear strange. However, if I am excited about something that I am experiencing and I shake my hands without telling the story, I am considered atypical.” Another scenario would be if a young child was having to speak publicly for a school project and public speaking was not a comfortable activity for them, those observing would not notice or judge if she were to grab a piece of hair to the side of her face and play with that hair. However, if an autistic child is placed in a scenario where they are outside their comfort zone, they might instead want to flip a book over and over. Again, it is an action of repetition as an act of comfort. The girl playing with her hair is socially acceptable. The book flipping is deemed strange by cultural norms.  By understanding how all people react to stressful stimuli in similar ways, the neurotypical population could gain some insight in the extreme challenges of the person with autism. While the neurotypical person’s experiences are in no way equivocal to the challenges of the autistic person, it is a step toward empathy and compassion. This is the essential, yet often missing piece of the integration puzzle. Even in these universal examples, there are such extreme challenges with some on the spectrum that it is a disservice to water down their experience in the name of difference.

Advocates of neuro related policies agree on this: “Nothing about us, without us.” No policies, movements, integrative strategies, nor research directives should be pushed without the voice of the people who stand to be most effected by the results. There must be a representative voice of the autism community in every decision made about the autism community. Keeping in mind the spectrum idea, naturally there must be more than one voice, as the voice of one is not representative of the varied population. Within the politics of those on the spectrum there is a meet in the middle ideal where the unique thinking and gifts of autism can coincide with an acknowledgement of the difficulties and special needs of some within the community. On a larger scale, greater education and healthy doses of empathy and compassion could go along way in benefitting all persons, regardless of political leanings, who live with autism.

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