A view of autism from along the spectrum

This week, 9 year old SJ said that he wanted to write a comment about autism on my blog. I told him that if he had something to write, he could write a post. Here it is, unedited:

I am a kid with autism and I come up with tips on things. This will make hope for autism. Here are a few places that you can use tips: karate, home, movies, and horseback riding. Here’s one: try your best!!! Here’s #2: stop if you need to. Now, for #3 (in case you play a game): quitters never win, and winners never quit.

The cover of today’s issue of Parade magazine found in many Sunday U.S. Newspapers has a cover story on Autism.

The cover headline asks “Is There Hope for Autism?”

Sorry for the language but, it pisses me off that, by even asking the question, the cover implies that the answer might be “No”.

File this under Angry Rant.

As I wrote a few weeks ago, MJ has been participating on a panel of adolescents, teens, and young adults speaking in public about their experiences on the autism spectrum. MJ spoke as part of another panel last week. As I wrote about last time, someone who appeared to have very good intentions in mind, asked another “wrong question”. A couple told of a nephew with autism and their sadness that he couldn’t communicate with them and asked something along the lines of “how can I help him speak so he can communicate with us?”

The moderator occasionally tosses some of the questions to one of the parents of the younger panelists. I happened to be sitting next to the couple and could hardly contain myself from jumping up and answering. Instead, I waited patiently (ok, not very) while the moderator passed the question to other parent to answer. The mother talked about getting to know the child better and being supportive, gently working her way up to the real answer:

“You need to change your view of communication. It’s not just speaking. There are many ways to communicate and while you are waiting for nephew to speak, you’re missing the ways that he is communicating with you. Find out the ways that he communicates and learn to understand what he is saying, even if he doesn’t speak.”

I could tell the couple was disappointed in the answer. I leaned over and spoke a few words of encouragement. They obviously cared about their nephew and wanted to learn (or they wouldn’t have even been there), but their expectations were off. Hopefully they will continue to learn and grow and adapt to their nephew rather than expecting him to change for them.

While doing some casual surfing this evening, I found link to an article titled Top 5 Things Every Extrovert Should Know About Introverts. It’s on a blog about self improvement written by Brian Kim.

The themes in Mr. Kim’s post are very similar to those that many of us write about in relation to autism: acceptance, understanding, and avoiding judgments. He describes, in general terms, that introverts think differently than extroverts (just in case the extroverts reading the post are lacking in Theory of Mind).

Since I first heard the term neurodiversity, I understood that it applies to all of us, not just those on the spectrum. Mr. Kim has shown that he understands about neurodiversity, even if he’s never heard the term.

Bullying is alive and well in our school districts but the nature of the bullying has changed. The administrators have
turned the tables. While they have instituted ‘zero-tolerance’ policies regarding bullying of students, they have institutionalized another type of bullying. Many administrators have become the bullies and their targets are parents of children in special education.

What is Bullying?

Bullying is not about fighting, it’s about power. For this discussion, I’m defining bullying as using power to intimidate and dominate someone with less power. Special education administrators regularly use their power to get their way, at the expense of the children that they should be serving. I’ve heard enough stories over the past few weeks from my fellow parents to confirm that this bullying goes far beyond a few isolated incidents.

Springtime in Connecticut is PPT time. The season when all special education programs are reviewed. The school year, excluding summer, is 180 days with 6 hours of school a day. A child will spend over 1,000 hours in the educational program. Each spring, the school district will schedule a meeting with parents, devoting an entire 60 minutes to the development and planning of the program for the student for the upcoming year. Yes, a whole hour! Meetings are scheduled back to back to back, and there is little time for discussion and collaboration. If everyone is on same page ahead of time, it works out fine. However if there is any disagreement or complications, there is often a push from the administrator to just ‘get it done’. Get an IEP on paper and move on to the next kid.

My description of the administrators’ behavior as bullying is based on recent stories from parents relating their experiences in this process. The stories come from many school districts and involve many administrators. They come from wealthy districts as wells as those that are not as well off. The stories are told by parents with children just entering the school programs and they are told by parents who have been in the special education system for many years.

How They Bully

The administrators that engage in bullying are never mean, and are rarely loud or unprofessional. The exert their power in more subtle ways.

The most common method of bullying is to not tell parents about services that are readily available in the district. The administrator will tell the parents about the services they want to provide and nothing more, withholding any information that could cause the administrator to lose power. When asked direct questions such as “Can you tell me what services you are currently providing to elementary school age students with autism”, they’ll hide behind “Let’s focus on what’s appropriate for your child and not programs that are designed for students with different needs”. Parents have told me that school districts have never mentioned summer services in the PPT meeting even when children with similar needs are attending summer programs. One parent said they were happy the district was providing a half day summer program for their child, until they found out that other children with similar needs were receiving all day programs.

Another common bullying tactic some administrators use is lying. I’ve heard several stories over the past few weeks of administrators telling outright lies to parents. In one situation, a parent asked a district administrator if their child could receive services over the summer. The administrator told the parent that the child was not eligible because the child is verbal and the summer programs are only for non-verbal students. This district is, in fact, providing services to verbal children over the summer. In another situation, a parent asked if a provider from outside the district could be brought in to provide a specific service. The district administrator told the parent that they don’t ever do that. The parent knew the administrator was lying, as they were networked with other parents and knew of a situation in which the district brought in someone for the exact service they were requesting. An administrator in yet another district told a parent that a child was not eligible for special education because their academic level was adequate (in kindergarten). They ignored the significant emotional and behavioral difficulties the child was having.

School districts also bully parents when they insist on identifying a child’s disability as something narrow such as Speech and Language Delay rather than something broader such as Autism. I know parents in several districts that encountered this problem. It’s a tactic used to control services. A child with a Speech and Language disability would be unlikely receive services from the school psychologist or occupational therapists. However, label a child as autistic, and most educational experts would agree that these services should be part of the child’s program. Some administrators have told parents “the label doesn’t matter” but insist on using the one that is consistent with less services. Others have said “You don’t want your child to go through life with a label of Autism do you?”

There are plenty of other less subtle ways that administrators try to exert power over parents. I know of one administrator who always sits at the head of the table, firmly establishing a position of power. This administrator has made other PPT team members move in order to have the ‘power chair’. I know of an administrator that dominates meetings so completely that they have refused to allow discussion on specific topics. Such discussion could result in consensus around an idea the administrator does not support, resulting a loss of power. The administrator controls the meeting in a way as to not lose power.

I suspect that much of the bullying by the district administrators is targeted at specific groups of parents. You are more likely to bullied the first year your child qualifies for special education, primarily because you are probably not experienced enough to advocate effectively. I believe districts are also more likely to bully lower income parents because they are likely to be less educated about their child’s disability and appropriate programming. Lastly, districts target parents that are not assertive and not strong advocates.

Why Bully?

I don’t believe that most administrators set out to be hostile and mean. The bullying stems, in part, from the expectations placed on them by the districts. They are not rewarded for providing appropriate programs and the progress of children under their supervision. Instead they are rewarded for getting paperwork in on time, coordinating and services without problems, and finding ways to provide services at a low cost. Many are self-motivated to get this done with the least amount of effort, and the least amount of stress (for themselves). For some administrators these motivations are so strong, they don’t mind resorting to a little bullying and lying if it gets the job done.

What to Do About Bullying?

I grew up before the age of political correctness and zero-tolerance for bullying. I personally learned that the best way to handle bullying is to stand up to it. Provided you were strong enough to do it, or had friends that would back you up, this usually ended the bullying, permanently.

We parents need to do the same and stand up to the bullying. We must be strong enough to stand up to it and when needed, connect with other parents to make us stronger. I could write an entire post about the ways we can stand up to it for the benefit of our kids. Instead, I’ll offer a short list of suggestions to consider if you’re being bullied:

• Invite another parent or an advocate to the PPT meeting (it’s within your rights).
• Find out what other services are being offered to other students.
• Research special education complaints and resolutions at the state level (in the US at least).
• Go to an advocacy class,
• Attend a PPT meeting for another child to help another parent and learn something yourself.
• Attend meetings with families outside of your school district.
• Read up on IEP law.
• Learn what the procedures are for filing a complaint.
• Take detailed notes about everything (it helps to catch lying).

I seem to be making a habit of quoting lyrics from songs in my posts. Today, I’ll close with some wise words from the late Bob Marley:

Get up, stand up: stand up for your rights!
Get up, stand up: dont give up the fight!

I wrote this post about two months ago, during Autism Awareness Month. My blogging hiatus got in the way of the heavy editing that all my writing requires. I originally intended to title the post “Beyond Oprah”, but the current title fits better with the unbalanced attention that a particular family is getting these days.

While I’m always glad to see autism get more attention, I’m disappointed when the media gives poor coverage. Even Oprah’s recent one hour show covering autism was, in my view, superficial. Fortunately there are other media outlets that are stepping up.

First, and briefly, Oprah’s coverage did not do much to raise awareness other than reaching a very wide audience. Oprah’s show may appear to be an hour, but commercials take it down to about 42 minutes. Subtract the ‘fades’ into and out of commercials, the passes between speakers, introductions and credits, and there’s probably less than 30 minutes of time left to actually talk about autism. Additionally, most of the guests participated in the Autism Every Day video last year. More diversity is needed in efforts to raise awareness.

Step in WNPR - Connecticut Public Radio. While Oprah was presenting information many had already seen a year earlier, the Connecticut NPR stations took a different approach. Over a two day period, WNPR dedicated two 1 hour episodes of the show Where We Live to focus on autism and what’s happening in Connecticut. Fortunately, on NPR an ‘hour’ means about 50 minutes rather than 30. Additionally, the producers sought out some wonderful Connecticut residents to tell the story. The story told was far more engaging than Oprah and I suspect it would be so even for those that don’t live in Connecticut.

Where We Live sought out 4 people, and one “special guest” to tell the story. The first episode was the more traditional ‘awareness raising’ approach. The guests were Dr. Ami Klin of the Yale Child Study Center and Dr. Marianne Barton of the University of Connecticut Both are doing internationally known work in the autism field. Dr. Klin presents a very holistic view of autism, and ties it in with a lot of the research that is currently being conducted. Dr. Klin’s reference to the breadth of the spectrum by describing it as “many autisms” resonated in it’s honesty about how difficult it is to ‘define’ autism. Dr. Barton has been working to improve early identification and is one of the developers of the Modified ChildHood Autism Testing Scale (M-CHAT) based on Simon Baron-Cohen’s original tool. Dr. Barton and others have been tracking the effectiveness of the M-CHAT over a period of years. While the studies are not complete, the tool has become one of the primary methods for autism screening for toddlers in the US.

The second episode included guests that have had a more direct impact on the lives of many autistic people and families in Connecticut. They are also all people that I have the honor of knowing personally. Ms. Stacey Hultgren is the Co-Director of the Connecticut Autism Spectrum Resource Center (CT-ASRC). The ASRC grew from a local parent support group into an organization that serves the entire state. Ms. Hultgren and her organization put an extensive amount of work into building a repository of information on services to support autistic people in CT. The final product, The Autism Spectrum Resource Guide is a 400 page volume covering almost every aspect of services available in the state. CT-ASRC facilitiates parent support groups, groups for autistic adults, and an advocacy course series that I wish I could find time to attend. Interestingly, Ms. Hultgren and the ASRC have accomplished all of this without affiliation with any national organizations.

Ms. Donna Swanson, was the second guest on the final episode. Ms. Swanson runs the Focus Alternative Learning Center, a mileu program for older children and teens on the spectrum. The Focus program is based on teaching skills in a ‘natural’ home-like setting rather than in an artificial setting such as a social skills group. Many of the staff members are young adults that were formerly participants in the program. MJ has been participating in the program for almost two years. Focus presents an advocacy panel discussion called “The Spectrum Unplugged” in which a group of teens and young adults present their experiences to an audience in various settings. The panel has been incredibly popular in the state and has been presenting about one or two times a month for almost two years throughout Connecticut. The Spectrum Unplugged deserves a post of it’s own one of these days.

The special guest on the final episode was Mr. Lucas Hoffstatter. I expect that he’ll be embarrassed that I refer to him as “Mr.” but he deserves the respect of a title as much as anyone else that I’m writing about in this post. Mr. Hoffstatter is a young adult with Aspergers, a former participant in the Focus program, and currently a Focus staff member. As team leader of the Spectrum Unplugged, he does a wonderful job of articulating both his own challenges and successes. Each time I see him speak publicly, I’m impressed by the mix of personal qualities that Mr. Hoffstatter presents. Each time this mix of qualities leaves one word resonating with me: leadership. I’m grateful that MJ has him as a mentor, even if MJ hasn’t yet figured out what a mentor really is.

I’m also grateful to WNPR to raising awareness in a way that Oprah could not. Each of the people who participated have accomplished far more than I could describe in a paragraph. These are the people that are doing far more than simply ‘raising awareness’. They are making a difference.

The links to the shows in the post above are to the WNPR archives where you can hear the shows in their entirety.

This week, Lee took MJ and SJ on a short visit to a friend of a family member. The woman they visited knew that both boys were on the spectrum. During the visit, the SJ asked the woman for a drink of water. While in the kitchen, she asked SJ if she could “Say a prayer over him to help him get well.” SJ promptly replied, “No, thank you” and returned his attention to his drink.

When Lee told me what happened, I laughed at both the well intended, but misguided, efforts of the hostess as well as SJ’s perfect response. SJ demonstrated exactly the kind of self advocacy that I want all of my kids to have. He was direct. He was polite. I don’t know exactly what he was thinking when he heard the request. It’s safe to say that SJ did not stop to ponder the question of whether or not his autism makes him not well. I’m sure his response was not based on the concept of neurodiversity. I expect that his motivation was much more simple. Nonetheless, he was direct, and he was polite. I can think of a better way to start advocating for what he wants.

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.

I made the trip to NYC yesterday to attend the Autism and Advocacy conference that Jim Fisher organized at Fordham University. It was an incredibly uplifting day. Both the speakers and participants reached out to each other throughout the day and I felt a sense of community moving through the group as if it were contagious. It began before the conference as Jim struggled to move the community from one room to another to start the presentations. It continued long after the conference was over, even as the staff was breaking down tables at the reception. For me, it even extended to train back to Connecticut. It was the first time that I literally broke bread with friends on a commuter train. Looking back, I see how that symbolism was consistent with the rest of the day.

I’m thrilled that I was able to grow some relationships and start new ones. After meeting Kim and Sara earlier in the week, I am grateful for the opportunity to get to know them better. Sharing our experiences as parents helped us connect and exchanging Monty Python quips while dodging buses in the middle of 42nd street didn’t hurt either. I found out that Mike and I work in the same industry and share some common colleagues. I was also able to tell him how I saw my own son in Katie’s eyes. I had the chance to talk to Kassiane again and meet Scott who hails from my alma mater Penn State. I shared perspectives with Joe and wish I had the chance to talk with him more. I met Kristina and Jim, even if we could only talk for a brief time. There were others, and although I may not have learned or remembered their names, the sense of community was still there.

Some things that are contagious are good for us. Some even nurture us.

Jim and Kristina, thanks!