The new discrimination

I woke up at 3 o’clock this morning with a sense of overwhelming anxiety, so I calmed myself by composing in my head what I would write about today. Writing and sharing our story is cathartic for me. I know there are thousands of families like ours and I want them to know they’re not alone.

As many of you are aware, we ended up going to mediation with Atlanta Public Schools for Robert’s education. All I can say is that it was a painful and difficult two-month process, but the end result is that Robert went back to his former public middle school today for the first time since the end of November. New systems and staff have been put in place and, overall, I’m pleased about the outcome and hopeful we’ll make it through the rest of the year. Rob is very stressed but they say he did pretty well today all things considered.

One truly gratifying outcome has been the reaction of Robert’s typical peers with whom he’ll share some classes. When our family lived in Vancouver, I worked with a group called Friend 2 Friend Society which was founded by another ‘autism mom’, Heather McCracken. From their website:

Friend 2 Friend Social Learning Society has developed and currently provides programs designed to demystify autism spectrum and related social-communication disorders and to promote understanding, acceptance, empathy and mutual rewarding friendship for all children ages 3 to 18.

I spoke to Heather a couple of weeks ago about the possibility of bringing Friend 2 Friend to Atlanta and it’s something I am very anxious to pursue. I presented a slightly modified simulation game program to both John and Robert’s classes at school – 1 at John’s private school and 3 at Robert’s public school. Over 60 students and teachers took part in the program.

In Heather’s program, participants play a simulation game that includes a simple spelling test taken while they are being bombarded with sensory input – noises, a voice-changer, feather duster, wind cannon, etc. Then we explain how sensory challenges make it hard for people with autism in school and how their communication difficulties make it hard to make friends. The program continues with ‘different kinds of minds’, in which we point out that we all have things we’re good at and things we’re not so good at and concludes with friendship tips, the most important of which is ‘accepting differences‘.

So while presenting the program to these 4 groups of middle-schoolers, I was struck by how attentive, engaged and receptive they were to the message. They asked good questions, many thanked me and shook my hand, and they were especially impressed with this slide of one of Robert’s drawings. I introduced this during a segment of the program called ‘I want friends’.

Robert - Grade 3 - I want friends

When one door opens, another closes . . .

I was really encouraged by the reaction of all the students and held out hope that the presentations would help my kids’ peers understand autism and be better friends to children with all types of differences. Then, on Wednesday, my husband and I attended a meeting at John’s private school. John has struggled in this environment. I had previously met with both his teacher and the principal of the middle school. I should have listened to my internal radar when the teacher told me, not long after John started school there, that he was “lower-functioning autistic” than anyone previously at the school.  This particular school (which I won’t name because my oldest son still goes there and has been successful) prides itself on working with kids with learning disabilities and language disorders. They told me at the beginning that they really “weren’t set up” for autism. That was my first clue, come to think of it. But John’s doctor had recommended the school based on John’s current level of capability and testing and I had heard wonderful things about it, so we gave it a try.

John really hasn’t been happy at the school since the beginning but we were trying to make it work for a number of reasons. And I continually asked myself if it was the autism or the puberty or the general suckiness of being 13 and in middle school that was making it so hard for him. My conclusion was that in addition to all those things, he didn’t have a good relationship with his teacher. She didn’t get him. I think she didn’t like him. She focused on his negatives and never on his positives. And he has a lot of positives – of all my kids, he is known to family and friends as the most friendly and outgoing. He is very sensitive and, because of his twin, also pretty tolerant. He wants friends.

So, less than a week after enduring mediation for Robert, and only two days after I’d gone into John’s classroom at my own expense and done a presentation, we were told John “won’t be invited back” to his private school next year. We weren’t just told. We were ambushed by a room full of people – two teachers, the school psychologist, the middle school principal and the speech pathologist. Joe and I were completely shell-shocked. We’ve been through a lot over the years, but this really hit us hard. After all, we likely would have come to the same conclusion at the end of the year. But to be put on the spot in a meeting in front of all those people and told, out of the blue, that they had observed him and done due diligence and researched other schools for us (I was NOT impressed by that piece of presumption on their part), was painful. And certainly not the kind of pain you’d expect from a school that costs . . . wait for it . . . over $24,000 per year. Per kid.

That’s why I called this post the ‘new discrimination’. Autism and developmental disabilities are the most pressing civil rights issues of our time. From institutionalization to segregation from the general community, our children and adults with autism face all sorts of discrimination. Their therapeutic care is not regularly and reliably covered by any health insurance. Their public education is often under-funded and wholly inadequate. They frequently suffer the soft bigotry of low expectations, both in school and in society. Adults with autism are treated the worst, with only 15% pursuing a college education and a 90% unemployment rate. {See this outstanding info-graphic from Samsung and The Dan Marino Foundation.} John’s private school is just a microcosm of a society that judges based on a label affixed to him instead of on his merits – as a solid ‘B’ and ‘C’ student, no less. What should we do now? That’s a question for tomorrow.

Our family never felt this ‘disabled’ in Canada. Just sayin’.

Peace.

Update: One of Robert’s teachers told me today that one of the groups I spoke with about autism has responded particularly positively. He went to sit with his former class at lunch and the new class, comprised of typical peers, waved at him, called his name and urged him to come sit with them. Never again will I underestimate the goodness and acceptance in these kids!

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