Monday, April 15, 2013

Autism: Awareness/Alarmist/Acceptance/Activism: The Next Generation.....


by Jane Strauss

Earlier in April one of my Facebook friends asked if awareness didn't always lead to acceptance.  This is a common misconception.  My answer, of course, was NO.  When awareness is brought up in an alarmist tone ("Scared yet?") it leads to fear, disgust, even hatred (Many "people with Aspergers should die"  or similar sites popped up online in the wake of a horrific mass shooting incident last year.)  A good example of this type of alarmism surfaced in some satirical "Neurotypical Awareness" posters on the Web, designed by a well-known blogger and Autism activist (Example here: http://www.disabilityandrepresentation.com/2013/04/04/neurotypical-awareness-its-inexplicable/)  What is most ironic is that apparently a number of people have not understood the irony here, especially interesting as some "experts" who are not on the spectrum claim that we Autistics are always literal and are incapable of understanding irony or sarcasm.

Yes, awareness of Autism, or of anything, is needed before it can be accepted.  Hard to accept what you don't know exists, right?  Also wrong.  At our synagogue, many people don't know what our son "has", only that he is in some way unique and behaves differently from the way they might expect a 15 year old to behave.  Letting them put a particular label on him will not change their acceptance of him, which has been indeed, very hard-won.   At least now the leadership does not tell the Rabbi to call us before a big event or "simcha" and ask that we stay home.  And I am still not "out" as Autistic to the majority of the congregation -- nor do most of the people who know believe the label.

Visitors, on seeing how my son relates, and the role he plays at the synagogue, almost always ask "Does he have (fill in the blank)?", filling it in with some (often rare, often genetic, and generally linked with severe cognitive delay) condition of which they are aware.  Filling in the blank with "autism" would really not change the situation, or their opinions (often wrong) of my son and his capabilities.   It would merely layer on top of their observations the stereotypes of autism pushed in the media.  Whoever my son is, he is NOT "Rainman", Adam Lanza, Temple Grandin, Ari Ne'eman, Carly Fleischmann, or any of the myriad people whose names come up on a Google search of autistic/autism.  He is himself, a unique individual.  Neither he nor I fit the stereotype of general lack of or robotic speech, static facial expression, or constant stimming in vogue based on much media coverage.  That does not make us any less on the spectrum, merely affirms the truism that "when you have met one autistic, you have met one autistic."

Acceptance - that may be key. But what is acceptance? Some have told me, or acted as if, acceptance means having no expectations of a person ever changing in any way. My response, especially when this refers to a young person, is "hogwash!" this is not acceptance, it is condescension at best, and a self-fulfilling prophecy of failure at worst. It is the attitude referenced by one of my daughters, a licensed Special Education teacher, when she announced that she was changing direction, entering the Early Childhood field, because "I want to work with and help kids BEFORE the system has given up on them!"

Some have said that acceptance is ignoring any difference and pretending a person has no challenges. This begs the question and ignores reality, which is that we are all different, we all have our strengths and weaknesses, and we all need to attend to both in order to learn and grow.  This type of "acceptance" is most akin, in my mind, to mainstreaming with no supports and then wondering why the plan didn't work.  It'[s the first cousin to wondering why the friend who just lost their job, had their car totaled, and ended up homeless might be a tiny bit depressed - well, heck, in such a situation they would have to be catatonic NOT to be a bit down at the mouth.  It's far different from the first assertion, in that it does not eliminate expectations, and yet the same in that it ignores uniqueness.  It's also the same as the first assertion in that neither provides any supports for a person to be able to learn, grow, or reach self-set goals, and that both approaches disrespect both reality and the person they allegedly "accept" as an individual.

As an autistic myself and the parent and partner of others, I put real Acceptance at a third and separate point on the plane, one rooted in reality, providing needed supports, and maintaining expectations. It is also based in the apparent mantra of my life: Picking my battles. 

Acceptance is:

  • Looking at the person in front of you and seeing who they are, what they want to do or be, and what barriers may exist
  • Asking them what their goals or needs are if you cannot tell, and asking them if you have it right if you think you know
  • Presuming competence and listening to what those goals or needs are
  • Asking how they would like to be helped if they do
  • Respecting their right to try and meet those goals, even if it means failing a time, or two, or ten.
  • Participating in their  life in the same way in which you would for any friend/child/student/partner (or whatever your role is.....), which, of necessity, means your role will be different with a young student or a child than with an adult
  • Realizing that all people are not alike, that outside Camazotz (the dystopia in A Wrinkle in TIme, in which Judge Rotenberg Center - like electric shocks are given kids who bounce balls outside an accepted rhythm)  shaping behavior to be identical is not an appropriate goal, and that actions often speak more loudly than words - in fact, that all  behavior is communication
  • Giving people space to be who they are, with all their peculiarities, actions or fallibility

If you would not try to change the behaviors of a person not labeled autistic in similar circumstances, trying to change an autistic person's behavior is NOT Acceptance. 

During the year when I was finally properly labeled as being on spectrum, i got a stellar example of this principle.  I had been working with an "advocate" at the local unit of one of the big national nonprofits professing to help families and people with "cognitive and other developmental delays".  the reason I was getting help was to file a complaint about disability related discrimination against me and others in my family due to disability.  And yes, I was angry. 

It was OK for me to be angry until their office staff found out that not only was I the parent of a "child with developmental delays" but I was a "person with developmental delays " myself.  Suddenly, I was ignored when angry.  Their staff, with limited skills, tried to "behavior mod" me out of expressing anger.  It not only did not work, but soured me on the organization and I will not even patronize their thrift store any more.  Of course they have now jumped on the "acceptance" bandwagon, and for some years have claimed to "train self advocates," but I know the truth about them, and that the only real self advocates in my area are folks from Advocating Change Together.

So what is next, now that the large organizations that do a fantastic job of Alienating and do anything but Accept us have jumped on the verbal "Acceptance" bandwagon?

Activism.  That's the next step.  There is a growing community of Autistics and Allies on the Web, and if we can keep from letting our differences and misunderstandings tear us apart in cat fights, we can exercise tremendous power.  We can see truth and present it.  We can give those who would condescend to us  enough rope to show others what they really do.  We can build community, and as we accept each others' strengths and complement each others' challenges, we can provide others with a real working model of Assertion, Acceptance and Awareness.  In building our own culture, we increase our strength and that is the first step to true cohesion as a community.

This a reprint. The original can be found on Facebook here:

https://www.facebook.com/notes/jane-strauss/autism-awarenessalarmistacceptanceactivism-the-next-generation/10151321388125813?comment_id=27676001

1 comment:

  1. I appreciate what you are trying to say and do for our community (autistic people). However, I feel that your definition of acceptance goes beyond that into assistance or accommodation. That in itself is not a bad thing, but if/when presented to the NT world, they will reject the premise on the grounds that it goes well beyond what they expected by the term "acceptance". I feel that managing people's expectations is the first step to educating the ignorant NT masses. How to do that, however, is beyond my knowledge.

    ReplyDelete

Respectful comments appreciated. Name-calling, trolling, etc.? Those won't be published.