We Parents Need to Improve our Chess Game

In the past decade, there has been a concerted effort on the part of many parents to make sure that autism and Asperger’s syndrome are differentiated as two distinct diagnoses.

Separating autism from Asperger’s syndrome has been important for several reasons:

  • the needs of these two groups vary considerably,
  • people with Asperger’s syndrome should not be stigmatized with autism, which is a much more debilitating condition,
  • people with Asperger’s syndrome should not feel that they have license to speak for people with autism, &
  • it harms people with autism to be considered the same as those with Asperger’s syndrome because, generally, they need much more in the way of treatment, support and supervision.

Opponents to the amalgamation of the two diagnoses say that it is meaningless to differentiate between the two categories because some high functioning adults with autism appear identical to adults with Asperger’s syndrome.

I have always thought that this was a function of effective autism intervention and look at this “problem” as success! I am prepared to live with the concept that great intervention may lead to a change in diagnosis.

In addition, many parents of children with Asperger’s syndrome were worried that differentiation in the Autism Spectrum Disorder may possibly lead to a decrease in services for their children. I understand the sentiment and know that those who fund treatment are generally very quick to pull funding whenever they can; however, I’ve always thought that this path ultimately harms all children with autism spectrum disorder.

Now we see it happening.
By eliminating the Asperger’s syndrome diagnosis through its supposed amalgamation into autism, not only have people with Asperger’s syndrome been denied their own diagnosis, but also many people with autism are without a clearly defined diagnosis even though they still have autism.

In other words, the powers that be have just put our children’s future in jeopardy. The question is can we get out of trouble, or will we be outmaneuvered?

Studying the Wrong Pathology

I just read an article about researchers studying the issue of transitioning children with autism to school. The study goals are as follows:

During each visit, children will be assessed on their academic skills, with a focus on language and literacy. Parents will also be interviewed to assess perceived school factors, such as quality learning opportunities and child engagement. In addition, parents and teachers will complete questionnaires to measure factors such as the child’s social skills and behavior, the parent’s involvement in school, and the student-teacher-relationship.

On the one hand, we want to applaud the effort. On the other hand, we already know what makes for a successful vs. unsuccessful transition to school. Read more...