Left Brain Right Brain

Four parents of autistic children sue Philadelphia School District is a story in the Philadelphia Inquirer. The story discusses how the families are filing suit to stop a policy in the district of moving children to different schools at the end of the 3rd and 5th grades:

Four parents have filed a class-action lawsuit on behalf of their autistic children, alleging that the Philadelphia School District is illegally moving the children from school to school based solely on their disability.

At issue is the district’s Automatic Autism Transfer Policy, which mandates that students with autism move to another school at the end of third and fifth grades. Non-autistic students do not have to move.

Aside from the policy which forces autistic kids to change schools multiple times, I find this interesting from another perspective: the class-action lawsuit. In general, it is difficult to sue districts in class-actions. Instead, complaints typically are filed on a student-by-student basis.

True to their name, Disability Scoop has already posted on this story (Parents Cry Foul Over Special Education Transfers)

I had the good fortune to meet John Robison at IMFAR. I told him then, and I still believe it, that we agree more than we disagree. This is especially true of some very important subjects. With that experience behind me, I have been been more likely to read his pieces when the titles pop up in my searches. He has a recent piece up on accommodation, posted to his own blog and has cross posted it to the Autism Speaks blog as well. I found that I couldn’t put the piece out of my mind but I couldn’t manage a short enough response to post to either blog. So I took his piece as a springboard to discuss my own views on accommodation, especially as it pertains to non autistics and how it has changed over the years.

Here’s a quote from Mr. Robison:

In my last post, I talked briefly about Asperger people who fail to get jobs for whatever reason, and then allege discrimination. Some neurodiversity voices ask for an end to that discrimination, and for greater acceptance.

I have asked for greater acceptance myself. I think that is a noble goal, but not one we will see attained anytime soon. When I look at how I was treated in childhood, how my 21-year old son grew up, and what I see today I see some change but not much. It leads me to wonder how much acceptance and accommodation we might reasonably expect.

I think I see things differently. In specific, I see that a great deal of accommodation has been gained over the years. This leads me to believe that more accommodation, especially for the disabled, is possible in my lifetime.

When I compare myself and my life to that of my father and mother I see huge changes in accommodation in a relatively short time period. In the 1950’s when my parents first started their family, a married woman, even without kids, was unlikely to be working. If she was working and she announced that she was pregnant, probably the first thing she would hear is, “when is your last day” or “will you help train your replacement?” The thought of keeping a job was not to be expected.

Part of the reason for this was simple: if a child was sick and had to leave school, or had to stay home (and that happens to all children), someone had to pick up the kid and stay with him/her. No way that would be the father. No way his work would accommodate him. Now many workplaces do, and this allows mothers to work.

Many companies didn’t have maternity leave in my parents’ day. Paternity leave? Forget it. Paternity leave is a fairly recent accommodation. A good example of how accommodations are still being added to our lives.

My mother loved to tell the story of the maternity floor on the hospital where she had her first baby. Women were moved there after giving birth and no men were allowed. She told of one of the hospital executives showing up at the maternity floor and being stopped by a nurse. Today maternity rooms include chairs that change into beds so fathers can stay with the mother and child. That is an accommodation.

IEP meetings, evaluations, placement visits…all these are familiar terms to parents of autistic children. This year was a big one for me, with many visits, evaluations and multiple IEP meetings. This coincided with one of the biggest deadlines in my career at work. I am incredibly grateful that my management took the position: get the job done and take the time off you need for the IEP. That’s a huge accommodation. No way my father’s management would have approved of that.

The workplace has continually added accommodations. But I think we often don’t see them as accommodations when they are granted for those without disabilities. In other words, I’ve benefitted greatly from the accommodations which have come out in the past generation. Why can’t I expect more accommodations for the disabled in the next generation?

Like Mr. Robison, I want to be acting. Part of that effort is directed at what I hope makes a better life for my child. Those accommodations may not be in the workplace, but that makes them no less important.

Mr. Robison has much good to say. In the end, we live in today, not the future. We have to work within the restrictions we face now. But, let’s not mistake fighting for a better future with mere complaining about the present. As a wise man once said, the best way to predict the future is to invent it.

This is a small study, a very small study. Parental Perspectives of Communication about Sexuality in Families of Children with Autism Spectrum Disorders. Interviews were held with 18 parents of autistic children. At the same time, I think papers like this keep an important dialogue moving forward. It’s tough for parents*at least this parent) to consider the future sexuality of their children. Well, there is of course the fears, in this case the fears of victimization.

Here is the abstract

Abstract

To explore the content of communication about sexuality between parents and children with autism spectrum disorders, semi-structured interviews were conducted with 18 parents of children ages 6-13. Content analysis and ethnographic summary were used to interpret the data. Findings suggest that parent’s perceptions of a child’s behaviors and comprehension are associated with the likelihood that communication occurs. However, parents recognize the risks their children experience, with the greatest fears being sexual victimization and misperceptions related to the intent of their child’s behaviors. This study provides information on the nature of communication about sexuality in families of children with autism spectrum disorders and can help tailor interventions aimed at assisting parents to communicate sexuality information effectively.

It strikes me as this is one of those times when bringing in the information autistic adults might offer would benefit those of us parents.

A while back, Kev wrote about an article in the Atlantic, Autism’s First Child. The story is about Donald T (Donald Triplett) who was the first child described by Leo Kanner in his first paper on autism.

I don’t recall at the time seeing this video the Atlantic produced on the story. I watched it and enjoyed it, especially the parts discussing how Mr. Triplett’s community supports him:

http://c.brightcove.com/services/viewer/federated_f9?isVid=1

Here is a video by Alex Plank of WrongPlanet.net and his crew from the IMFAR 2011 Tech Demo. Alex splices in footage of the awardees discussing their tech inventions.