A view of autism from along the spectrum

MJ is always happy when he is making something. It can be building a Lego, baking cookies, or a number of other activities. A week or so ago he told me he wanted to make a video. The subject was his often performed rendition of the Christmas song Dominick the Donkey performed by a pair of nutcrackers. It was his video, so all I did was film it, letting the setup to him. I still laugh every time I see it.

Wade’s recent post on the Combating Autism Act got me paying more attention to this often discussed (except in House of Representatives) piece of legislation. After ranting a bit in the comments to Wade’s post (Sorry Wade, I’ll keep future rants on my own blog!), I paid a little more attention to what has been going on.

I was pleasantly surprised at the amount of information that was so readily available. I was able to see Rick Santorum and Joe Barton on CNN via YouTube. I heard an interesting interview on my iPod. Heck, even the House and Senate have a wealth of information on-line. I was unpleasantly not surprised at the state of politics I found therein.

Growing disillusioned while conducting my research, I thought back to a time when politics wasn’t so petty and ego driven. To a time when people in Washington cared about doing what was right. To a time when people not only did the right thing, but also engaged in witty banter while walking down hallways. Yes, I thought back to a time when Aaron Sorkin was writing weekly episodes of The West Wing. To a time when 44 minutes of drama was enough to resolve political gridlock (88 minutes over two weeks for a particularly difficult issue). My thoughts eventually took me to this question: What Would Aaron Sorkin Do?

Now I’m no Aaron Sorkin, but I can’t help but think of a few scenarios that he might use to address the current situation. Since he’s a little busy with another writing gig, I’ll pass them on without his review.

• In a last minute attempt to save face, Rep. Joe Barton holds a press conference. He states that he sent an email last week to his entire committee indicating that he is willing to release the Combating Autism Act for a vote but no one replied. Senator Ted Stevens joins Barton at the press conference and goes on to explain that the email was never delivered because the internet tubes are clogged. The committee agrees to release the bill to vote as long as Senator Stevens agrees stop referring to the internet as a “series of tubes“.
• Sorkin updates the story from The West Wing season 2, episode 17, in which an elderly Senator filibusters in order to get a bill passed with money for autism research. In the West Wing version, Senator Stackhouse from Minnesota reads recipes for 8 hours, preventing the Senate from adjourning for a weekend recess. As the filibuster eats into the weekend, the White House staff realizes that the Senator has an autistic granddaughter and rounds up support for adding the autism research money to the bill. Sorkin would make some adaptations as House rules preclude a filibuster. Changing the storyline to keep Barton from going home for Christmas would be interesting.
• In a third possible scenario, Representative Duncan Hunter, Chairman of House Armed Services Committee, submits a bill to the house floor for a vote. The bill allocates $1 to fund upgrades to the US military base in Qumar. Before the vote, a Fellow Californian, and Chairman of Appropriations Committee, attaches an amendment consisting of the entire Combating Autism Act.
• House Republican leaders show up in Barton’s office and tell him to let the bill go or lose their votes for any leadership position for the next session. Again leveraging the script he penned for The Stackhouse Filibuster, Sorkin has President Bush, within earshot of reporters, saying of Rep. Barton “He’s a curmudgeon. A grouchy old crank,” The House leaders and President Bush also force Barton participate in the annual Big Block of Cheese Day. He is assigned to sit down with Mike Bernoski and actually listen to what he has to say.
• In my last scenario, Barton realizes how out of touch he is and releases the Combating Autism bill. In a press conference he says “If 244 Representatives cosponsored the Combating Autism Act and only 14 cosponsored my NIH Reform Bill, maybe something is wrong with the bill or my politics.” Nah, that one is too idealistic for even Sorkin.

It’s been a long break from blogging for me. There’s no big reason behind it, just a lot of little ones. Here’s a sample of my rambling thoughts from the past few weeks. Next, it’s time for me to catch up on my reading.

• When did our idea of the perfect educational setting become 20 students, all of the same age, placed in a room with one adult with a four year college degree? OK, so we vary the number of students and some teachers have advanced degrees. Still, it’s a pretty narrow model considering the diversity of learning styles people have. Why is this model considered ‘mainstream’?
• I hate the word ‘retard’. I mean, I really, really hate the word.
• There are not nearly enough child psychiatrists in central Connecticut. I expect other areas have the same problem. I can’t believe how often my wife and I hear of families that can’t find any child psychiatrists taking new patients.
• I built a PC for the first time last month. My 11 year old has wanted to build one for a long time. For his benefit, we bought a case with a see-thru side panel and blue LED lights for the inside. He loves making things and if it has lights, all the better. I can also now say that my kids use Linux.
• I want to figure out how to balance privacy with writing about my kids. Maybe nicknames would help. I’m getting tired of writing “my 11 year old” or “my 7 year old”. It sounds so cold.
• Anyone who says razing children with autism is a nightmare has never parented a neurotypical teenager. OK, it wasn’t a nightmare, but there were days when it felt like it. Fortunately, we all keep growing. As of last weekend, I am officially no longer the parent of a teenager. I am now the proud father of a mature and responsible 20 year old. It feels really good.
• In know one particular special education administrator who avoids taking responsibility for doing anything they don’t want to do. The only way to get something done is to put every request in writing. Without it, I can expect little but excuses. I get so tired of writing letters.
• For years, my wife and I have been taking the boys out for breakfast on Saturday mornings. We have a lot of reasons for doing this, one of which is that the local diner is a great place to practice social skills like eating politely, using inside voices and speaking clearly when ordering. My youngest doesn’t always speak clearly and will look at everything except the waitress when he orders. After observing this yesterday, I coached him to aim his voice at the waitress and I demonstrated by moving my hands back and forth between my mouth and the place where the waitress stands. I fully expect that next week when he orders, he will move his hands back and forth between his mouth and the waitress. He’ll probably still be facing somewhere else when he says “French Toast!”
• I received a brochure in the mail for an upcoming autism seminar. Instead of focusing on treating autism, the seminar is about the attitudes and beliefs of the people providing support. I have never come across a seminar with this type of focus. I’m glad to see the dialogue on autism become broad enough to support a seminar like this.
• There’s a lot of ’stuff’ on the internet vying for my attention: Email, RSS, Bogs, News sites, forums. I find it tough to filter it out. That’s one of the reasons for the long blogging break
• There are far too many issues with school transportation. I am stunned at the things that slip through the system. On the first day of school this year, two buses showed up to pick up my youngest and his classmates. We got a call from the van driver picking up my middle son. He asked to adjust pickup times and locations for several days. He called again at the end of the day and asked if we would meet him a mile away from the house because he was running late! Last year, my youngest was not dropped off at his correct bus stop for the first three days. We discussed all transportation arrangements at the PPT but when the bus showed up at the end of the first day and he wasn’t on it, the bus driver said he knew nothing about it, and didn’t know where my son was. The driver didn’t seem to care either. My son got off with a classmate a stop earlier. Yes, we panicked and almost went back to ’special’ transportation. Ugh!! There are too many people involved: the school, special educators, the district transportation staff, the busing company, the bus drivers. No one acts like they are responsible.
• It’s time to finish some of the posts that I have percolating.
• The leaves are changing colors in New England and we saw the first wave of ‘leaf peepers’ come through this weekend. I just love the change of seasons.

This year’s ASA national confernece was only a two hour drive from home. My wife attended for the whole conference and the boys and I joined her Friday night. A few thoughts on the short time I spent at and around the conference Friday night and Saturday:

• My wife’s observation that the people at the conference were incredibly friendly was right on the money. Even an introvert like myself was engaging in easy conversations.
• The exhitbition hall at an autism conference is the perfect place for children to ’stim’ in public. My youngest attracted nothing less than warm smiles and laugter as people easily recognized the enthusiasm, energy, and excitement as he he kept running and spinning his way accross the floor to very large crawl-in toy from Abillitations.
• Providence has more restaurants per square mile than any other city in the US. The boys just want to know where they can get chicken nuggets.
• You can’t have too many sensory toys. Or autism books.
• It’s hard to walk very far when accompanied by the boys therapy / assistance dog Stitch. Stitch was, to put it mildly, a very popular golden retriever this weekend. The attention made the boys feel special too. And that special feeling is one of the reasons we got Stitch for them.
• You never know who you’ll meet. While attendance was light Saturday, and the blog writers attending had already presented their sessions, I was delighted when I spotted Kassiane’s nametag in a group of people Stitch befriended. Hearing that she was doing the conference Jim Fisher is organizing in NY this fall gave me another reason to make a day trip to ‘the city’ in October. If you’re intrested, Kristina has more information at Autismland.
• As far as the boys are concerned, hotel + pool = vacation.
• Three out of four people with an ASD are male. Less then two out of ten autism conference attendees are male. I could write a whole post on this topic!
• Sensory sensitivities make it very difficult to sleep in a hotel room in a busy city on a Saturday night. Those sensitivities were mine. The kids were sound asleep.
• While this is the first national conference I’ve attended, I was impressed with the quality of topics covered. It seems that every year that goes by, the dialogue about autism focuses more on relationships, support, and understanding neurological differences. OK, there were also a few “fringe interventions” on the exhibit floor, but not many.
• While I gave the ASA a hard time about the slogan “The voice of autism” a while ago, they are doing some important things. Conferences like this have a lot of value.

Harriet McBryde Johnson is a lawyer, activist, and writer. She’s been mentioned in several other blogs recently, but when I read them, I failed to dig deep enough to get to know much about her. While I was not able to attend the public speech she gave last week in the area, an article in the Hartford Courant provided some insight to the person she is and the message she delivered last Monday. She is living her life in a way that leads by example.

I won’t repeat Ms. Johnson’s story. It’s available in the article, in her book and elsewhere. Instead, I’ll share the most compelling aspects of the little I’ve learned about her. Ms. Johnson has dealt with what many would call a disability since birth. She describes to the Courant her experience as a student when she moved from a ’self contained’ program to a mainstream setting. During this time, she felt that she had strong ties to a peer group in the self contained setting and lost those relationships when she was moved to the mainstream setting. While the mainstream setting provided ‘typical’ peers, it did not provide the peer support she previously had.

The experience carries a powerful message about peers, and how much is given up in the name of mainstreaming. It’s an example that all parents need to consider when making educational choices for our children. We parents, and others involved in planning their programs, must make sure that the educational setting provides the appropriate peer support our children need.

Johnson has written a memoir and recently published a novel, Accidents of Nature. In the novel a teenager with cerebral palsy has some life changing experiences when she attends a camp and meets other disabled teens for the first time. It sounds as if she has drawn on her own experience to present an aspect of living with a ‘disability’ that is often overlooked. Connecting with others that have common experiences is such a fundamental part of human nature, it’s amazing it’s so often over looked when we seek out what’s best for our children.

We finally bought an easy button this week. In case you’ve missed it, the easy button is part of a marketing campaign by the office supply retail chain Staples. The slogan for the campaign is “That was easy!” To go along with the slogan, Staples sells large read buttons with the word easy in big white letters on the top. When you press the button, an electronic voice says “That was easy!”

A talking button is a pretty silly idea, which is exactly its appeal, at least to me. And the boys absolutely love it. I expected it to be just silly distraction, but after a few days, I see that it is actually a multi-purpose tool in a house with boys on the spectrum. Depending on the situation, pushing the button has been:

• A new form of currency in a token economy.
• An opportunity to share a little public celebration (RDI style) for any feat accompli.
• A simple provoker of giggles and silliness.
• All of the above.

I’ve already seen benefits worth far more than the $5 I paid for the button. I also admit to buying my own button on my desk at work.

Requisite disclosure: I don’t work for Staples or own Staples stock, or know anyone who does. However, I do confess to an almost compulsive need for neatness and organization and can wander the aisles at Staples for long periods of time, in much the same way that I can lose myself in a hardware store.

As soon as I publish this blog post, I’m going to go push the button! That was easy.

I caught up on my blog reading today after a week in which one of my sons needed a level of support beyond what is ‘normal’ even for our family. He continues to get the support he needs and the long weekend has offered the chance for a breather and some reading time.

The Autism Speaks video continues to generate discussion. Much of the response has been negative and with characterizations of the parents that included “whiny” and “selfish”. It’s been in these descriptions that I’ve noticed that something is missing. And before I go further, let me clarify that this post is about the video and the resulting discussion. It is not about Katherine McCarron’s mother.

The thing that’s been missing from the discussion is simple: compassion. Sure the video presented a view of parenting autistic children as particularly dismal. We observed the parents behaving in ways that seem very unsupportive of their children. Many have said that the parents need to stop whining and complaining and get over it because “that’s life.” I completely agree with the assessment that we need to take on life’s challenges rather than letting them get the best of us. However, we also need to recognize that life’s difficult times can include depression, loneliness, and feelings of helplessness that may even be called despair. It includes periods of frustrations, adjustments to those frustrations, and hopefully acceptance. Life dishes up these difficulties to all of us at different times, in different amounts, intermixed with the joy and the happiness. Its best not to judge but to count our blessings for being in a better place.

It seems reasonable that the producers of the video would seek out those parents who were at a low point in the cycle of ups and downs that life dishes out. Its those parents that would exhibit behavior that supports their message. Perhaps the parents were even encouraged to talk and behave in ways that were very different than they would off camera.

We know next to nothing about the parents in the videos other than they are struggling to deal with their child’s autism. My perspective of neurodiversity is that we need to allow room for those that are emotionally strained, people who pessimistic in their outlook, and even those that are whiny. The proper response is to be firm in our own convictions but also offer compassion, for both parent and child.

I know many parents of autistic children who have challenges far beyond mine. Some have spouses that are in denial and unsupportive. Some have families that lay the responsibility for the child’s differences at the parent’s feet. Some have doctors and teachers that tell parents that the problems are all in their head. Many have yet to find a network of people that offer support and are instead surrounded by blame and judgment.

Over time, I hope all parents can provide the love and support that their children need. I also hope we can find compassion for each other during the times that we struggle.

I wanted to write a post with this title for a long time. The recent dialogue over the Autism Every Day video provides an opportunity.

I made a point of not watching this video when I first read about it in one of Wade’s posts. I figured that I could read a lot of blogs in the 14 minutes it would take me to watch it. Heck, if I wasn’t such a lousy proof reader, I could even write something on my own blog in 14 minutes. I read a few more blogs tonight, including Kristina’s and Susan’s and figured it was time to see what all the fuss is about.

Based on what I read, I expected to see 14 minutes of people talking about suffering and struggling. Because I was looking for the negative, I noticed the mothers that smiled and had positive things to say. And when I heard the more negative emotions, I recognized that I’ve felt all of them at one time or another. Every single one.

I then realized that I wasn’t watching the perspective of the parents. I was watching the perspective the editor of the video. The one that chose which ’sound bites’ to include and which ones to leave out. Recognizing how much work goes into professionally editing and producing a movie such as this, I know that we have seen very little of what what these families experience on a daily basis. I’m sure they feel a spectrum of emotions, and we’ve only seen a few glimpses.

I keep very low expectations for any type of media coverage on autism. It’s not that I expect the coverage to be bad, but rather that I expect it to cover only a very small part of everthing that I’ve come to know as autism. How much can really be said about autism in 14 minutes? Not much. Even less when you consider that your audience includes people that know very little about autism and that you must include interesting and engaging settings, custom graphics, etc. If this video was the only current dialogue on autism, I’d be concerned. It’s not. It’s part of the story, but its not the story.

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.