We ended up in the situation described in the NYTimes article regarding seeking a private placement for Charlie with our previous school district, and had to seek legal counsel, though we we did not, as things, turned out, have to require the lawyer’s presence in a school meeting. We do bring our ABA/autism consultant, to speak for Charlie’s needs. One reason I have been glad to have Charlie back “in-district” is due to the sort of capriousness of deciding who can attend and based on what criteria as you describe, Caroline.

I should have made clear that I was talking about New York City, and the Upper East Side in particular.

The public schools do their best, but cannot accomodate all the children with special needs. The state approved special education private schools have moved away from accepting children with ASD unless they can perform very well on standardized tests and have no ‘behaviors’.
That is, unless the children are from very rich and prominent families, then the rules are relaxed to accept these children.

It is astonishing to me personally that state approved schools can change the types of children they will accept. One director told me one year that the only types of children they would not accept were “children with autism with no language”. The next year it was ‘we do not take children with autism because they cannot learn’.

Even in the schools for ASD children, often the kids with ‘behaviors’ get ‘kicked out” because the staff do not know how to work with the children and do not care to even try, there are so many other children that can take their place.

I do hope that Autism Speaks will devote a large part of their awareness campaign to change this, ’society-wide’.

The thing is, the person who decides what is “reasonable” in terms of supports & services is usually just that- one person. And it’s their interpretation of “reasonable” that can cause the inequalities in services from place to place. We were very fortunate when Brendan entered the special ed. system that the person who decided what was “reasonable” thought that busing him 3 days a week to another school for OT & PT was unreasonable, & so approved on-site services for him- the first child from our district to receive on-site services at that school. On another occasion, Brendan was tested by a speech therapist to see if he qualified for therapy, & because she had no training in autism, she felt he did not require speech support, even though all kids with Aspergers are guaranteed speech therapy in our area… However, when the speech therapist from the Autism Spectrum Disorders Team in out district interpreted the results of the testing, she made a very strong case for his needing pragmatic speech support & at present he’s getting daily speech therapy sessions! Quite a large difference from the original tester’s findings…

I think that these experiences argue that individual assessments by people who understand autism are the only way to really help individuals with autism & their families. As for there being a “culture of judgement & exclusion” in NY… I think we can make a case for such a culture to be society-wide.

I saw parts of Larry King and read the CNN transcript – there was a lot of emotions and opinions to digest, but I think the big positive message was these kids need love and understanding.

Gary Cole felt that the letters his wife wrote to the teachers and students about their daughter helped to create an atmosphere of acceptance for her.

(I was not allowed to do this at my child’s old school and a lot of parents and children have a lot of well-intentioned questions)

What the professor from Western wrote in Kathy’s entry is so important. I hear that it is difficult for children to ‘get services’ in Ontario, and that Canadian parents hear that New York is full of qualified, wonderful therapists. That actually is not the case.

Suzanne Wright knows the culture of judgement and exclusion for children with differences in New York especially and she can sound alarmist, but for the families she sees, it is an alarming and dire situation. Not the child or the label, but the lack of supports.

He said, ” One woman from autism speaks was talking
about autism an an ‘epidemic’ I don’t like such alarmist terms.I think we need to learn to accept others who are different, and to try and understand and to help them, and to take responsibility for this as a society.”

Having had very little to do with autistic kids(apart from Mark whom he adores)I think that his comment was a very perceptive one.