My autistic family ain’t your autistic family

This one is subtitled, why “least restrictive environment” should not be used as a weapon. First, some background. There are lots of rumors swirling around my district lately. Many of them around moving students out of SDC or small self-contained special ed classes, and “mainstreaming” students into regular education classes, with a bit of time each day in a pull-out special ed class. I was discussing this with a colleague who had one of the first “mainstreamed” developmentally disabled students in her high school class in her second year of teaching.  Since she was new, didn’t know much, and didn’t get any guidance or support, she wasn’t sure if the students had gotten much academically from the experience, but she said that what struck her later was that she had intuited that this mainstreaming provided socialization with “normal” peers for the student, but, what struck her was how this had affected those “normal” kids. They had gone along all four years of high school and included the student in things like Prom. By not shutting this student away in a “special” class, this helped the social development of other students as well as the special education student.

There was a secondary special education teacher by us as well. She expressed concern that when students were mainstreamed, they often missed out on the “life skills” classes they needed to transition to life after high school, which would be a concern. I shared that although I’m the parent of a child that is flourishing in a mainstream environment, I also know parents who prefer SDC for their child and they may have good reasons. Because as a parent you make the choice based on what your goals are, and what’s best for your child. For my son, he can do grade-level academic work, and can work in a regular size class without an aide. It makes sense to have him mainstreamed with RSP. I said there’s a reason why parents have to sign off on IEPs and they have appeal rights, they are often in the best position to balance those needs. The secondary special education teacher noted that whatever her feelings, she always preferred to provide services based on what the parents goals for their child were, and that this meant that she didn’t have any “due process” appeals filed by parents. Do parents always make the best choice? No, they don’t, but as long as some districts are looking at trying to “save money” by eliminating these “costly” classes, I’d rather parents have some say.

How does that balance look? Well it’s not always pretty as you’ll see below…

I don’t need to be “fixed”!

My son does not perceive of himself as “different” or “disabled”. He is just fine with who he is, thank you very much! Now don’t get me wrong, what kid wants to be that kind of  “different, and  no 11 going 12 year old boy is crazy about being told how “to do” things by his mom, but this has been true since before his diagnosis.

He’s not the first person with an autism diagnosis to feel this way. Being a parent, and a teacher, I always want my kids to improve themselves. But, I remember something an autistic parent I talked to early after he was diagnosed told me. She warned me that there would be a push to work on behaviors that were not strictly speaking, necessary for a reasonably happy adult life. Like working on getting kids on spectrum “de-sensitized ” so they could “successfully” participate in lunch in a cacophonous cafeteria.  That’s a great goal for schools, but is it critical for the kid’s long-term development she asked?

Since that time, I’ve tried to take a functional approach. First, I don’t want my son to be “cured”, I like him and his personality just fine.  I look at most of the therapy interventions we are doing as improving on a kid who is already pretty great. Now this is easy because he is pretty great. In addition to my son though, I have a brother born when I was around 9, who was a classic, very low-functioning autistic. He made us all wish for a cure,  not just because of the enormous amount of time and energy he took. What was heartbreaking was that he was so miserable and unhappy most of the time, and what made him happy, dumping out every bottle of toiletries in the bathroom, running in front of cars, was just not going to be sustainable. Which brings us straight back to how I started this piece, different kids, different families, different circumstances mean that these kids cannot be placed into some neat box, and we shouldn’t punish them for not fitting into our blueprints.