A view of autism from along the spectrum

A few months ago, I wrote series of posts on the topic of disclosure of our children’s diagnoses of ASDs to themselves, their schools, and others. I advocated for full disclosure to our children, at the level they can understand.

I find myself struggling with following through on that.

My wife and I have been open with both our boys and we talk freely about ASDs. It’s been pretty simple up until now. While my youngest had his diagnosis change from autism and PDD-NOS at a young age, the older of the two always had a diagnosis of Aspergers. Until now. A recent evaluation led to a change in diagnosis to PDD-NOS.

Personally, I don’t get hung up on the differences between the various ASD diagnoses. There’s a lot of characteristics to consider and I believe as long as you can ‘get in the ballpark’, you’re on your way to helping and understanding.

However, 10 year old boys are not always so flexible. He’s talked to his class at school about Aspergers and has even been involved in media coverage of Aspergers. He also has a very clear understanding that he and his brother have different diagnoses. He can’t necessarily tell you what the difference is, but his sense of identity definitely includes the label of Aspergers and he knows that his brother’s includes PDD-NOS. I wonder how hard it will be for him to lose a name that he has associated with himself for so long. It is a loss. I’ve said in a previous rant, Aspergers is just a better term to identify with than PDD-NOS is. Not the diagnosis, just the term.

I have thoughts of not telling him for a while. The label really doesn’t mean much to anybody else and he’s going through some difficult times. We’re currently very focused on establishing some stability for him. Why do anything to impact the stability we’re trying to build?

I know myself well enough to predict how it will play out. I’ll choose disclosure, as I always have, and I will do all that I can to use it as an opportunity for learning and growth. We’ll talk about the different characteristics of Autism, how the labels overlap, and how they are somewhat artificial. And then I’ll tell him that if he want’s to still wants to use the term Aspergers in describing himself that it will be perfectly OK.

For my last post on this topic, I’m going to change the definition of ‘full disclosure’. When it’s your blog, you can do things like that.

I first wrote about being forthcoming about autism to our children on the spectrum. I also advocated making sure that they are identified as autistic on their educational plans for the schools and teachers.

For everyone else, we must go out of our way to disclose the entire person that our child is. Autism is only one aspect of who they are, it does not define them. They have many other qualites and characteristics that deserve to be part of our disclosure.

When we introduce people to one another, we never feel the need to tell each one every detail we know about the other. Instead we disclose a few items that are relevant. Similarly, we can tell people who our children are without focusing on autism. We can even introduce our children to people without mentioning it. We are no more obligated to bring up autism, than we are to point out an intense dislike for green beans. We can talk about their relationship with siblings, their likes and dislikes, or the toy they just got and won’t put down. By focusing on the entire person, we set an example for others and for our children. There are many adjectivies that describe our children, autistic is only one of them.

There was a time I felt the need to provide explanation for some of the non-typical things my children did. This need was driven more by my own lack of comfort than anything else. I’ve since developed a sense of confidence in both my children and my own skills as a parent. My boys are so much more than a few quirky behaviors observed by others. As parents, we set the tone of how they are percieved. I intend to set a tone that adds to their self esteem and shows the acceptance and respect that I want others to have for them.

Call me rigid and inflexible, but I think all children on the Autism Spectrum should be identified as autistic in their educational plans. Additionally every teacher involved with the student should know that they are autistic.

Parents and professionals have told me stories of administrators wanting to use other identifications in the educational plans of a children with ASDs. These other identifications include speech impariment, ADD-HD, emotionally disturbed, or just about anything but autism. Parents and professionals heard a variety of reasons including:

• “You don’t want to label your child for life, do you?”
• “The label is not important. In this school district we focus on the individual needs of the child, regardless of the label”
• “Since your child’s speech has improved, he no longer qualifies for special education because of speech delays. We need to change the identification on the IEP. How about ADD-HD?”
• “He doesn’t look autistic”
• “Autism is just a fad”
• “If we label the child as autistic, the parents will want an ABA program”

Administrators made all of the above statements regarding children who were previously diagnosed with an ASD. While these statements outrage me on so many levels, for now I’ll focus on only one: They hinder the disclosure of the student’s autism to school staff.

The US Federal Government sponsored a publication several years ago with guidelines for educating students with autism. One of the guidelines was that students with any ASD should qualify for special education under the category of autism. The state in which I live recently published guidelines as well. Guess what? They said the same thing.

I’m going to give the administrators the benefit of the doubt and assume that they are not trying to withhold services (play along for a moment) or otherwise harm the child. Regardless of the reason, the effect of identifying an autistic child with a different disability is that it hinders disclosure, particularly for those students educated in the mainstream setting.

This leads to the obvious queston. How can teachers effectively educate a student with autism if they don’t know the child is autistic?

I know many parents of children on the spectrum that struggle over when they should tell their child that they have an ASD. I’ve never considered anything other than full disclosure at the earliest appropriate time. My motivation for this is simple: There’s a lot to gain from full disclosure and anything else has potential for harm.

I never want my boys to hear their parents talking about autism or asperger’s behind their back. I don’t want them to think that there is something so wrong with them that we can’t talk about it. They are both aware that they have difficulties; they experience them first hand every day. If we fail to talk about it, they’ll likely think that “something is wrong with me” rather than “I am different, and that’s OK.”

I want them to feel that autism / asperger’s / pdd is part of who they are and that we can talk about it as easily as we talk about any other aspect of our lives. I want it to be a topic that has no more emotional baggage than talking about school or the weather.

I want knowledge of autism to be part of the basis upon which they learn to know themselves as they grow to adults. I want them to recognize their strenghts and be willing to learn and be coached in the areas that they need it.

Of course, it’s necessary to tailor the disclosure to their ability to understand. It varies with each child and it varies with their age. I’ll continue to add information as they are capable of processing it. The objective is not to have a one time conversation that results in their knowing that they are autistic. Instead, the goal is to foster a continual dialogue over a long period of time. Like all aspects of raising children, it’s not a sprint, it’s a marathon.