A view of autism from along the spectrum

Rather than blogging about autism, today I’m going blog about autism blogs. In my geek lingo, I call this ‘going meta’.

A few weeks ago I wrote about my intent to more closely follow the writings of other bloggers. Fortunately, the combination of Firefox and Sage that I tried is working wonderfully for me to make my blog reading easier. I click a button and can tell when any of 20 blogs have been updated. Two or three clicks let me add another blog to the list. It’s simple and it works.

The benefit is that I’ve found the writings of other bloggers incredibly rich lately. Two obvious reasons for finding such great writing are that I’m reading more consistently and that the number of bloggers continues to grow. I also sense that there is another, more subtle reason, hidden just below the surface. I’ll explain what I think this reason is.

A term that can be found all over the internet recently is Web 2.0. The meaning behind this term provides insight to the other reason that I believe is impacting our blogging.

While there is not a consistent definition of what Web 2.0 means, the meaning that is relevant here refers to the social components of the web that have enabled individuals to actively participate in the exchange of ideas. The social components include publishing on Bloggerand Wordpress, photo sharing on Flickr, recommending news stories on Newsvine and sharing bookmarks on del.icio.us. The web is no longer a place to simply get information, it’s now a place to exchange information and ideas.

The point (yes, I had a point!) is that I sense that some of the recent richness in the blogs that I read is that we are gaining insights from each other. These insights get reflected in our writings which in turn further increases our knowledge and insight. Issac Newton referred to this as “standing on the shoulders of giants”.

We may not be giants (yet!), but we’re standing on each other’s shoulders. And the view may not be clear yet, but we can certainly see farther.

I’m encouraged by the large number of upbeat posts that my fellow bloggers have written over the holidays. My New Year’s post, like my Christmas cards, is late. It’s been a crazy couple of weeks for me and my focus has pretty much been ‘one day at a time’. As things have been calming down and I find myself reflecting a bit on my participation in the blogosphere ( Ugly word! Maybe for my next rant I’ll take on words from the internet).

It took me way too long to start blogging. I decided to start a blog this spring. At the time, I could only find one other person blogging regularly on autism (Props to Kev for blogging since June 2003!) Maybe there were more, but I don’t recall finding them. By the time I picked a name, evaluated blogging applications, made some graphics, hacked someone else’s layout, got a host, and started posting, a spectrum of other bloggers were already on-line. It took me a while to catch up and get to know other people’s stories. Actually, I’m still catching up. Meanwhile others continue to join the conversation.

I have certainly learned a few things. When I started putting together a blog, the term neurodiversity was new to me and I had never heard anyone describe an intervention as bio-medical. I had no idea that the disagreement between views on interventions could be so strong. I’ve been impressed with the desire to rise above disagreements for the purpose of continuing dialogue.

I thought that I had some worthwhile things to contribute. I was pleasantly surprised to find so many other people sharing valuable thoughts and ideas. I quickly realized that I need to spend more time paying attention to others if I was to make my contribution meaningful.

I thought it would be easier to keep up with the on-line dialogue. Setting up some RSS feeds helped, but it still seems like it should be easier. I just tried the combination of Firefox and Sage this afternoon. It looks promising. Maybe I’ll be able to keep up. If you haven’t ditched IE for Firefox, I suggest doing so. As my youngest told his first grade teacher last year, “The blue ‘e’ lets bad things on your computer”. He may often struggle communicating, but not about the computer.

I relearned an old lesson that good writing takes a lot more work than just having a good idea. My inability to find spelling and grammatical errors while proofreading became obvious after my first post.

I learned that, even though my wife and I talk about autism constantly, writing a blog is another way to share ideas. She gets a little more insight into me with each post she reads. I’m still waiting for her to leave a comment!

The best part has been the sense of support that I both observe and experience. I’ve certainly found this type of support with other parents in person, but I didn’t expect the on-line connections to feel as real. The connections are real enough that when I passed a car with an Autism Awarness magnet in New Jersey on Monday I had to turn to see if Kristina or Eileen were driving. They weren’t but I realized that you’re never to far from autismland.

I’m looking forward to both reading and blogging through the year. I’ve got a few posts that have been rolling around in my head for weeks now. Some are simple, and some are going to take some work to write clearly. Some are very personal, and some may be viewed as controversial. I’m looking forward to putting pen to paper (or fingers to keyboard) and clicking on the publish button.

Happy New Year!

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.

Language provides us the means to communicate ideas, build and share a common vision, and grow and expand our knowledge and understanding. It can also limit our ability to do all these things.

Some of the language we use in discussing Autism Spectrum Disorders drives me nuts. The topic is too important for us to settle for such lousy words and terminology. The language that really bugs me is listed here. I generally try to be positive on-line, but this is a rant, so don’t expect me to offer up any suggestions.

Autism - The difficulty with this word is figuring out whether someone is using it to describe the spectrum of disorders or the particular disorder that has been called autism for many years. While it’s a great term to describe the spectrum to someone who doesn’t know it, it also dilutes the meaning of the specific diagnosis of autism. We need two terms here, not one.

Pervasive Developmental Disorder – This term may have very specific clinical meaning, but it’s a terrible phrase for a layperson. The words carry the connotation of “this is complex, you won’t understand.” Its likely to cause eyes to glaze over.

Asperger’s Syndrome – This one works for me even though most people can’t get the pronunciation or spelling down. It’s at least identifiable as a general ‘place’ on the spectrum. By naming it after a key researcher, it at least follows a convention that’s recognized in many fields.

Atypical Autism – I hardly no where to start with this one. I have yet to hear of any case of autism that seems ‘typical’. Since we often refer to non-autistics as ‘typical’, this term could also be represented as Atypical non-typicalness. Since we’ve made the spectrum broader (by changing diagnostic criteria) over the past 20 years, this term really doesn’t have much use any more.

High Functioning Autism – I have a love/hate relationship with this term. On one hand, its simple, easy to understand, and an attempt to represent something much more important than diagnostic criteria. From that standpoint, it’s one of the few ‘common-sense’ terms that we have. On the other hand, it also leads us to ranking autistics relative to one another in a very subjective way. That’s not helpful when dealing with the multi-faceted presentations of autism. It can lead to overlooking abilities that are not obvious or easily measured.

Pervasive Developmental Disorder – Not Otherwise Specified – There’s no love/hate issue with this one! Here’s a term that is incredibly specific, but only at describing what it’s not. It’s like asking What color is the sky? And getting an answer of: It is a deep color that is not brown, red, or purple. I’ve met quite a few parents that have had professionals arrive at this diagnosis for their child and they’ve felt that it’s not a ‘real’ diagnosis. A different name would make this diagnosis much more acceptable. It would also keep us from using even less meaningful terms like PDD-NOS.

Autistic vs. ‘has autism’ – The difference between these words means a lot to some people. While the difference doesn’t particularly resonate with me, I respect and understand how these phrases can subtely shape our perception of autism. I try to choose which words to use based on the listener or reader. Or, more likely, I’m clueless and don’t pay attention to which word I’m using and likely offend people that favor either term.

Neurodiversity – What a wonderful word! Maybe it’s because diversity has been such hot topic in the work place, but I just knew what this word meant the first time I saw it. This term even speaks to ideas that go beyond the autism spectrum. All of our interactions with others are driven by how our own brains are wired and how we react to how other peoples brains are wired.

Biomedical – OK, you’ll need to figure out on your own whether I included this term to be fair or just to stir things up! It’s really a pretty good word. Sure it encompasses controversial things like chelation, but it also includes pharmacology, genetics, and other physiological aspects of autism and treatment. This word is very worthy of inclusion in our dialogue on autism.

In the 1960s, some ‘experts’ blamed mothers of autistic children for causing their child’s autism. These experts accused mothers of being cold, distant, and unloving of their children and that their detachment lead to their childrens’ withdrawl. Fortunately, I know of no one that is currently advocating the unloving mother theory as the cause of autism.

Recent writings have commented that fathers of children with autism often have a set of personality characteristics that can be classified as ‘geeky’. This was articulated particularly well by Steve Silberman in an article published in Wired Magazine a few years ago. My wife and I first recognized that our middle child had Asperger’s Syndrome after reading this article.

Citing the personality characteristics of parents of autistic children is not new. Leo Kanner’s first article on autism cites personality characteristics in some of the fathers that sound geeky to me. It’s is generally accepted that family genetics play a role in neurological characteristics. It’s also generally accepted that children learn many behaviors from their parents.

Does this mean that parents are the cause of autism in their children after all? Certainly not! However, it seems to me that we parents may have a unique advantage in helping our children learn how to deal with some of the characteristics of autism. We may have some of the same genetic characteristics, to a greater or lesser degree, as our autistic children. We also may demonstrate behaviors that are similar, in either appearance or function, to those of our children.

Shortly after my son was formally diagnosed with Asperger’s Syndrome, I told him that I “have a little bit of Asperger’s” myself. It was my way of letting him know that he wasn’t alone and that I deal with some of the same issues. I continue to use my “little bit of Asperger’s” as a starting point in helping him whenever I can.

Here are some things that I think we parents can do to identify and take advantage of similarities we may have with our autistic children.

• Identify our own personality characteristics that are autistic, even if they are only slightly so. Examine these characteristics, how long we’ve had them, and how they affect us. Once we understand the characteristics, identify how we display them to others. For example, I’ve always been somewhat introverted. I know that I tend to avoid small talk and that this can appear to others as being unfriendly. I can easily relate this to my sons’ challenges with reaching out to others.
• Identify any negative behaviors that we model for our child. Do we become frustrated and angry about unexpected change? As an example, I’ve learned that my sarcastic comments about other drivers can lead to my son to perseverating on the fact that others are ‘breaking the rules’. I try to use such instances as a starting point to initiate change for myself. I let my boys know that I’m trying to make the change so they can observe the results. Every time I slip up in my efforts, I have an opportunity to talk with them about what I want to do better.
• Identify our own positive behaviors that can help our child. Our children cotinually use us as models for behavior. These behaviors will be particulaly powerful models if they relate to situations they also face. If I can ignore a driver that cuts me off, perhaps my son will learn to be flexible when he feels someone has cut line at school.

I’d be exaggerating if I said that these tips have made everything different. They haven’t, but they have some things better and they feel like a very healthy foundation upon which I will continue to build. I also continue to learn a lot about myself and I always consider that a good thing.

My wife gets credit for taking this picture and combining it with the text for a scrapbook. I simply made a digital version. My youngest son is the subject and I’m moved by how well it depicts how his autism may appear to others.

I came accross this article in the Yahoo! news feeds this week about families in Texas dealing with shool system issues. The article was the first I’ve read in a while that wove in information, throughout the article, on the emotional aspects that parents with an autistic child face. OK, let me clarify. It’s the first that presents emotional aspects using words like “worrying, arguing, and accepting challenges” rather than words like “nightmare, dispair, and traumatic.” The article itself is not groundbreaking but I thought the tone stood out, in a postive way, from most other articles I’ve read lately.