A view of autism from along the spectrum

No I’m not writing about hearing voices. This is just a little rant on something that I came accross the other day.

The Autism Society of America is holding it’s annual conference only 90 minutes away in Providence, Rhode Island this summer. This past weekend, I added information about the conference to the web site and monthly newsletter for the parent support group my wife and I coordinate. As I was visiting the ASA site in order to paste some links, I was taken aback by the phrase that appeared with the ASA logo: “The Voice of Autism.”

I wasn’t aware the autism had just one voice. I rather enjoy listening to many of autism’s voices. I could make a flowery metaphor here about the voices of autism being a chorus, but that would imply that we are all singing on the same key. We know that’s not true! The many voices of autism sometimes create interesting harmonies but other times build into noisy cacophonies.

I’m disappointed in this ’slogan’ but I’m not going to write off the ASA because of it. I belong and will continue to belong to the ASA. I learn a lot from the magazine the ASA publishes. I also recognize that it’s only one of many groups and that it has strengths and weakness like any other organization. As I wrote in my last post, large organizations tend to overestimate their ability to influence individuals. My cynical side also noticed that the ASA chose to use some improper punctuation and put a period at the end of the phrase, which is clearly not a sentence. The Voice of Autism period. Perhaps someone thought it added a degree of finality to the statement. Perhaps someone was just trying to come up with a strong phrase without really thinking about what it meant. I’m guessing it was the later.

I’d like to suggest a more appropriate slogan: “A Voice of Autism”, without the period at the end.

Changes in our communities generally fit into one of two categories. I call these categories top-down changes and bottom-up changes. The top-down changes are those that are initiated by government or other large organizations. The bottom-up changes are the ones initiated by individuals that grow one person at a time. While it seems that the top-down changes are the ones that have the most strength behind them, it’s the bottoms-up changes that make a difference. This is just as true in autism communities as in any others.

The biggest problem with top-down changes is that they are put forward by organizations that have grown so large that they lose their own ability to change. Because the organizations can’t truly change, they have limited ability to influence change. The No Child Left Behind act is a perfect example. Improving education is a worthy goal and doing so by using measurements and assigning accountability is a strategy with a lot of merit. Hand this task to the Federal Government, who puts mandates on State Governments to make sure that local governments meet the Federal Government requirements and you’ve got a recipe for meaningless change. Well intenioned, but pretty much meaningless.

The bottom-up changes are the ones that are generally unobserved as they get started. They’re not very visible because there’s only a few people involved. The changes happen over time, due to the strength of an individual’s commitment, their leadership, and others recognizing that the change is worthwhile.

There’s a organization in my state that excels at driving change from the bottom-up. The group, the Autism Spectrum Resource Center, is not affiliated with any national or regional organization. It had it’s beginnings as a local support group for families with autistic children. A small, but dedicated and energetic, group decided to reach higher and make an impact beyond their local area. They gave themselves a state-wide focus and went to work. They engaged the support of professionals with state-wide, national, and international recognition. They developed workshops covering a wide range of topics. They compiled lists of resources throughout the state and published a 300 page resource guide. They hold an annual resource fair to connect individuals, families, and professionals. They are at the center of an effort to pass legislation so that Connecticut will no longer be one of two or three states that does not provide services to autistic adults who need them.

The Connecticut Chapter of the ASA has become more visibly active in Connecticut over the past year or two. While this may appear to be an example of a top-down change, looking closely shows that this visibility is due to a few people that are very motivated to drive change. The fact that they are affiliated with a national organization has not kept them from making change, one workshop, one support group, one email, and one phone call at a time. It’s just as much bottom-up change as the ASRC.

We need to remember that we can drive these types of changes. We may only influence a small number of people, but the impact will be more significant and longer lasting than the changes put forth by large far-away organizations.

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.

Since my wife and I got involved in a parent support group, we’ve found that many of moments of ‘bonding’ between parents have been during discussions of their child’s special interests. Some of the special interests seem so unusual that it can be a huge relief to parents when we meet others whose children share the special interest.

I offer the following list in the spirit of sharing, and with a little concern that someone may misinterpret this list as belittling or making fun. I’ve been known to have a laugh over some of the special interests but no more so than I have over my own quirks. For the most part, thoughts of these special interests put a smile on my face, because they are part of who my sons are. My wife and I have gone out of our way and put both time or money into every item on the list. It’s usually a lot of fun.

So here’s the list, in roughly in order of the ages in which they appeared, with interest of both boys intermixed:

• Light switches – This was the first interest that we noticed and was the first sign that clued in a family friend that my son may have an ASD.
• Watching a sing along video tour of Disneyland.
• Wheels on Cars – Big pickup trucks with “deulies” were a big favorite.
• Backup lights on cars – This was an obvious growth on lights and cars. It’s also the only special interest that brought safety concerns. Watching a 4-5 year old run to the rear of vehicles as they were backing up in order to see the lights is rather frightening
• Buzz Lightyear – There was a period where my son put his Buzz Lightyear Halloween costume on every single day.
• Playing a handheld Wheel of Fortune game, even though my son couldn’t spell. I met a mother who was very relieved to hear my boys interest lasted longer than the game did and we had to replace it. Her son had gone through two and was on the third.
• Electricity – after we built a house my son used an electrical outlet tester and found several outlets that the electrician wired wrong. He later fixed the microwave. OK, he actually just unplugged it and plugged it back in, but it started working again and we were ready to buy another
• Fire Alarms – Within seconds of walking into a room or building, my son will know where the fire alarms and emergency lights are located. The sounds of the alarms also causes a lot of anxiety
• Books – Although the books change from time to time, there is usually a favorite that travels everywhere and often gets put under the pillow at night.
• Elevators – We go out of our way for an elevator ride. On a business trip, I once took a picture of the elevator in the hotel and emailed it home to my son. He was thrilled.
• Our golden retriever, Stitch. There’s also been a long term interest in Snoopy.
• Light Sabers – We have two boys at home and probably a dozen toy light sabers. We have every color, ones that light up, a double sided one, one that can be made into dozens of shapes. This week we got an interactive TV video game in which you hold a light saber and duel with characters on the TV.
• Trains – A trip last year on Amtrak from Pennsylvania to Connecticut was a thrill for my son. He looked out the window for five hours straight, mesmerized.
• Railroad crossings – The ones with gates on both sides and lots of lights are best.
• Color Laser printers – a current interest. I’m asked to buy one at least once a day. It’s also becoming a significant distraction in educational and therapeutic settings.