A baldly honest comment on living with ASD, and, educating those with it

I had an e-mail from a former coworker this morning which got me to thinking. She was talking about what I lived with, with autism in the house (this person had never visited my home). I realized, even ASD professionals have huge misperceptions and prejudices, that’s right, prejudices, concerning what it is to live with persons on the Spectrum. How then, are we dealing educationally with these individuals if misperceptions are that rampant even about living with them? Then, I had a bit of a brainstorm.

I have been working as an educator for students with what is now Autism Spectrum Disorder since 1990, long before my child affected by it was born, long before my husband was diagnosed. I began teaching right around the time Lorna Wing’s work concerning Asperger’s was translated into English, and the huge upsurge in and acknowledgement of the existence of AS in the English-speaking world started. It has been a lightning path in the world of autism; fraught with mistakes and malfeasance and greed and misunderstandings. We are human; as a race, we sometimes have trouble organizing changes to the point of understanding them as they are happening. The professional, which informs and leads the nonprofessional, world of ASD is like that. Most of the mistakes we in the neurotypical world have recently made and are now making can be blamed on new information coming in faster than we can process it, and the fears and speculation in the media and the minds of humans associated with that.

The most egregious error we are currently making–those of us who work with those on the Spectrum, particularly–is in refusing to see and concentrate on the positives and the neutrals; those facts that define a student. Who they are. It is all about, right now, who they are not; what we consider negatives, what they can’t or won’t do.  As long as the educational perspective remains making those on the Spectrum fit into the neurotypical world; accept and tolerate aversive environmental stimuli at school; acquire and demonstrate neurotypical paths to learning and learning outcomes; become neurotypical students during the school day and remain so to complete work at home to turn in the next day or be punished, we will be misserving this no-longer low-incidence population. There absolutely must be a shift in perspective which honors the unique, mysterious, and humanity-enriching individuality of people with ASD. We have to take a long, hard look at ourselves and the boxes we are trying to fit these students in, everyday. A problem-solving (problems for us, the neurotypical world) perspective is not working in the classrooms. Ask the parents. Ask the students. Ask the teachers.

I was with a teacher recently who kept telling me that a child’s stims must be extinguished. Why? She found it disturbing that this child had stims. The little girl was not disturbing other students, and when she stood and rubbed a small piece of felt she kept in her desk, she was able to concentrate and acquire knowledge and demonstrate mastery. But, we had to get rid of the stim! It made the teacher (a neurotypical) uncomfortable; she couldn’t understand it. This was an E.S.E. teacher in a public school who called to consult with me, on her own. The district she worked in had done extensive training with her in ASD; it was all handled ( she had “the endorsement”). And, she still didn’t get it. The language she was using was baldly ignorant, she actually felt it was important to get rid of this device which helped the child learn!  I hold us, the educators who educate teachers, responsible. We are allowing these control-seeking, individuality-crushing teacher behaviors to remain in place. There are whole meetings out there, take my word for it or investigate yourself, spending thousands of taxpayer dollars trying to figure out things like how to get people on the Spectrum to become neurotypical at school. How to force them to fit.

Sure, there are problems we need to solve to help people on the Spectrum. We owe it to them to continue rigorous research. Meanwhile, let’s also honor who they are, particularly when it comes to education (see my blogpost regarding can’t and won’t). Even the clinical language is still woefully inadequate; “nonpreferred” is a terrible term. It doesn’t begin to capture what happens in the body of a student with ASD when presented with certain stimuli. Ask them! We don’t even, yet, have the proper professional language.

Until these attitudes and prejudices are eradicated from our educators, we will not ever serve this amazing population of individuals. As far as I can tell, they’ve always been here, and they are here to stay. Isn’t it time for acceptance? Let’s sit at the feet of those we serve, pay attention, and begin to find out what they have to offer when we finally accept them as they are.

2 thoughts on “A baldly honest comment on living with ASD, and, educating those with it

  1. Neurodiversity needs to be celebrated in students, rather than snuffed out. The goal of education is for students to learn, not to be assimilated into a neurotypical mindset. While fellow people on the spectrum, like myself, need certain social skills to navigate the neurotypical world, teachers can teach those skills without eradicating the kid’s already successful learning methods. Give the kids what they need to help them learn, rather than trying to force a square block into a round peg, and then your goals as an educator will be met. It’s that simple; we can’t consistently have happy Autistic students unless we are able to spot this kind of phobia in our teachers.

    Liked by 1 person

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