A view of autism from along the spectrum

Productivity blogger Merlin Mann summarized some of GoDaddy founder Bob Parson’s tips for keeping the telephone from interrupting us. Merlin, as usual, draws a clear picture of how a simple productivity tip can make a noticeable impact in our quality of life. It reminded me how I need to prevent external distractions from taking away from the time I have with my kids. The timing was perfect as I chose to blow off a call from mom last night to focus on the kids. (OK, it was mom; I didn’t really blow her off. I answered and said I’d call back.) It’s pretty powerful to make that choice at a conscious level. The time with the kids was wonderful, and mom didn’t mind. I chose to blow off a few more distractions tonight until after they went to bed. It felt good tonight too.

In 1952 English author C.S. Lewis wrote a book titled “Mere Christianity”.  The meaning of the word mere, as used in the title, is very powerful although it is now somewhat obsolete.  Lewis used mere to mean ‘pure‘ or more descriptively ‘what is left when all the unimportant things are stripped away‘.  His book made the point that Christian faiths have a lot more in common than their differences and that those differences aren’t about things that are essential to Christianity anyway.

I found myself continuing to return to the meaning of the word mere as used by Lewis as I read the flury of blog postings and comments by other parents this weekend.  There is a lot of passion in this group and sometimes there’s lot of energy going into things that aren’t related to our primary passion: helping our autistic children.  So, in the spirit of C.S. Lewis, I offer the following description of Mere Autism as a potential common ground.

• A lot of people have autism / are autistic.
• We’re diagnosing autism a lot more than we used to.   We have multiple theories about why but we haven’t been able to agree on one or more of them.
• Autism impacts communication, social interaction, and behaviors.   The way that autism impacts an individual varies greatly from one autistic person to another.  We don’t understand why.
• There seems to be both genetic and environmental factors influencing or causing autism.  
• Parents take a wide variety approaches to raising and nurturing an autistic child just as parents have differing approaches to raising any child.  Furthermore, similar approaches have different results with different autistic children.  
• When taken collectively, the differences among autistic indivduals, the complexity of human genetics, the potential variation and impact of multiple environmental factors, the differences in approaches taken by parents, and the variety of outcomes, autism is an incredibly complex topic.

With that I’ll step off my little electronic soapbox.    :^)

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.