Wednesday, August 17, 2011

Things I Don't Discuss With The Autism Community - Part 1

There are two things that I make it a point not to discuss with my friends in the autism community because they are too divisive. One is Autism Speaks.

People have lots of things they dislike about Autism Speaks. The one that I hear the most is that they waste too much money on salaries for their executives, travel budgets and their offices on Park Av in NYC. These things, I'm not sure I object to. Their salaries seem extravagant to someone on a middle class American's income, but that's comparing apples to oranges. How much do they make compared to their peers who do similar work at other non-profits? At the American Cancer Society or the United Way? Nonprofits are companies too, and they have to offer competitive salaries to get the best employees (even though the people working there should be there primarily because of their passion for the cause). Autism Speaks also funds lots of really worthwhile research and sponsors events that help build a sense of community that I think is vital for the parents of autistic children.

The next objection to AS that I hear less often is that they operate from the perspective of the caretakers of autistic people and do not represent autistic people themselves. Autism is a condition that does not preclude a successful career. There are plenty of people with autism that are scientists, yet until 2010, there were no members of the board with autism spectrum disorders and even now there's only one out of 34 members.

Many autistics themselves are critical of AS treating autism spectrum disorders as disease. Many adult autistics see their autism as simply a big difference between themselves and the heurotypicals in the world. I don't know if I agree with that, but it's not my place to tell an autistic person who holds that belief that they are wrong and that they are broken and should be fixed.

Finally, and this is an ironic one that will lead into Part 2, Autism Speaks has lost several scientist board members because they continue to fund research into vaccines as a possible cause of autism. I know that a lot of parents will disagree with me, but I do not believe that vaccines cause autism. I believe that the scientific establishment here in the US and in Europe have thoroughly investigated this potential connection and have disproven it.

Considering these things, I don't know if I personally support this organization. But what I do know is that there are other charities that I do support, like Apps for Children With Special Needs, who gave Joseph his iPad. But like I said, many of AS's functions are important for community building. For this reason, Kristy and I will be participating in Walk Now for Autism Speaks this year, but we're not walking for Autism Speaks, we're walking for our son, and for our friends with children on the spectrum and their kids. We won't be soliciting donations, if you want to make a donation to a charity, please visit

This is the only time I will be talking about Autism Speaks, so I hope it was thought provoking. :)

Wednesday, August 10, 2011

A New School

This afternoon we visited the classroom where our district is setting up their new pre-K program for students with autism. We've decided that it's the right place for Joseph at this time.

Last November we discussed putting Joseph in an autism center. I liked the idea of a program designed specifically for students with autism, and the low student to teacher ratio (at the time, Step By Step Academy still had 1 to 1 available). However, we ultimately decided that Joseph had been making great progress, and regardless of the potential for faster progress in a center, the typically developing peer models in Dublin's classrooms were more important.

They told us that this is exactly why they've established this program. They talked to parents who had chosen to use Ohio's Autism Scholarship Program (in Ohio, any autistic student can receive $20k annually to pay for education outside of the public school, this can pay for ABA aides, a private school, or an autism center). The lower student to teacher ratio was the biggest reason most of them cited.

It's all a bit technical for me, but as I mentioned in my previous post, this new class is based on the TEACCH model. The two main differences, apparently, are that it's in a typical preschool setting, and they have peer models. Joseph is the fifth student to be signed up for the class, there are already 2 peer models and 2 ASD students. They're going to be signing up more peer models to keep it balanced. The teacher and the class aide both have extensive professional experience with kids with autism spectrum disorders. They also have connections with the Nationwide Children's Hospital Autism Center so when we establish Joseph's formal ABA home program, it will be easier to coordinate with what they're doing at school. Also, the school has procured an iPad 2 for the class, and I told the teacher that if they're willing to work on it with him, we're all about sending Joseph's iPad with him to school (this is a change from his previous class, where they didn't know how it worked and were hesitant to use it).

I think that we're excited for this change. I hope that the more structured environment will be what Joseph needs.

Friday, August 5, 2011

New School Opportunity, and a general update

I'm afraid I've not been the best blogger for the past few months. I haven't had anything specific to write about Joseph's progress, and we had a new babynlast month (six weeks early). Things are starting to get back to normal though.

First, Joseph has continued to make great progress with his expressive language. At this point, he's even requesting things verbally. Apparently, he and mommy ran into one of his classroom aides, Joseph said hello to her and told her about the new baby. We've been working for a while on this home ABA program, with mixed success. It was going very well at the beginning, but now it's pretty rough. We're trying to figure out how to make it work better. Joseph was approved for SSDI and soon he should have Medicaid, then we can get the third ABA aide paid for and we can get a more formal program with a doctor from Children's Hospital in charge.

Joseph's two new obsessions are, Star Wars (particularly the Clone Wars cartoon) and the new Thundercats series. It would be worse, he's thankfully not shown interest in Thomas the Tank Engine. :)

Yesterday we got a surprise phone call from Joseph's school district. They said they just got funding for a new program in the district that they thought Joseph would do well in. It's a class based on the TEACCH method, which I'd never heard of.

From what I understand (and I encourage any readers with more information to comment) TEACCH is a teaching method designed for students with autism, that focuses on the student's strengths and interests. This class would have more one on one work, and have 8 students, half of which would be typically developing peer models. I've been told that it's very effective for students that need structure, and Joseph desperately needs structure right now.

There were two reasons that Kristy and I decided against sending him to one of the many autism centers. First, we felt that typically developing peer models are important, particularly right now. Second, we really like Joseph's teacher, and he really likes her too. We asked the school to have her call us to tell us what she thought about this new program. Kristy spoke with her today, and she said she was conflicted because she loves Joseph so much that she doesnt want to give him up, but that she does actually think that is new class would be better for him than the more general special ed class.

So Joseph's old teacher is going to go with us to meet the new teacher, and if everything goes well he will be in this new program this year. At the end of the school year, we have to decide if he is ready for kindergarten or if he should stay in preschool for another year. Based on the tremendous progress he's made since his diagnosis almost a year ago, I'm optimistic that his language and behavior will be developed enough for the mainstream kindergarten classroom.