A view of autism from along the spectrum

I spent a lot of time over the past week or so working very hard at what looks like absolutely nothing.

What I really worked so hard at is actually ‘not reacting.’ Behavior outbursts are a come and go problem in our home. Now that our son is settled in to his new school, I’ve made an effort to get some of the other routines back to normal. Not surprisingly, I ran into some resistance.

I was unprepared for the magnitude of the resistance the first evening and the situation escalated quickly. I didn’t get too far into it when I realized that the best thing I could do was back off and let my wife take over, even if it meant taking a step backward in the effort to establish routine. If I kept going, we’d take two or three steps backwards. I had no patience and I was making things worse.

The next day I was ready. I put my ABA (Amateur Behavior Analyst) hat on and prepared to do nothing during the outburst that was sure to come. When it came, I unemotionally directed my son to follow me to my bedroom where I turned on a soft light and lay across the bed reading a book. I provided no positive reinforcement and barely acknowledged the outburst. I left him to continue the outburst on the bedroom floor. I provided some occasional back scratching and distracted him with talk during lulls in the outburst. Eventually the outburst subsided and he finished the nighttime routine with lots of positive reinforcement.

The outbursts continued each evening and I continued to ‘do nothing’. I spent so much time doing nothing that I read over a quarter of David McCullough’s 1,100 page biography of Harry Truman. I also did some more back scratching, provided some redirection, and modeled some sensory activities.

This is not the first time I’ve been through this cycle and I know its not the last. It can be incredibly difficult to hang on through the outburst showing no emotion but a smile. Focusing on the goal provides the strength for me.

It’s paying off. I’ve had less time to read each night and I haven’t been as emotionally drained by the time bedtime is over. I even had enough time to blog tonight!

I love finding things that have a meaning or an impact that go far beyond immediate appearances. I found one this morning.

Today was Day 5 of my son’s new school program and I drove him for a before school activity, staying until it was over to make sure it went OK. I walked with him to his classroom afterwards and was somewhat surprised when we failed to make a turn toward Room 2. I then learned that he starts each day in his mainstream classroom. This was the first time in several years that he hasn’t started and ended the day in a self contained classroom, even when he was mainstreamed for all his classes.

My first thought was: This isn’t right! Mornings are hectic. What if something goes wrong? Where’s his aide? I shoved the ideas aside and checked in with his teacher. I then met his new aide and chatted about the events of the previous day. All the while, I was stealthily observing how the morning routine was going. As children finished gathering, I said goodbye and walked away.

Before I even reached to door to leave the school, my sense of concern about the changes in starting the day had been replaced. I realized that the change eliminated the extra transition (from the self-contained to the mainstream classroom) each morning. He’ll have much more time to get comfortable in his space each day. He’ll only have to settle into his surroundings once.

I followed this train of thought a little further. I realized that by starting the day in the mainstream classroom my son might get the subtle message that he belongs there, all day! It’s a different message than the one we’ve been sending for a few years. A little bit of success may lead to increased confidence in his own ability to handle starting the day in the same way as other students. Learning to deal with this before middle school would be wonderful.

I’ll readily admit that these changes may be completely trivial and simply result of the different logistics of different programs in different buildings. I’ll take them anyway as the risks are low and the upside is high. I’ve learned it takes lots of little changes to find what works and that’s there’s something positive to be found in most changes.

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!

It has felt like it’s Autism 7×24 lately. The transition between school programs for one of my sons has moved autism even more to the center (if that’s even possible!) of our busy lives. Even more of our lives over the past few weeks have revolved around various aspects of autism, from school meetings, social skills groups, educational evaluations, and using vacation days to stay home while my son is “in transition” between programs. While I’m happy to do all of it and even proud of how I’ve been able to make a difference, I also admit to feeling rather worn out. It’s easy for me to become wrapped up in the day to day challenges and lose sight of the bigger picture.

While waiting for an appointment last week, I picked up a copy of Time magazine’s Best Photos of 2005 issue. I expected to be impressed with some exceptional photography, but I was not prepared to be touched emotionally. I opened the magazine and I found page after page of pictures of the devastation caused by last December’s tsunami, Katrina’s destruction in the US, and the recent earthquakes in Pakistan. Perspective came back to me bit by bit with each image as I realized how my current challenges pale in comparison to those of many others.

I’ve always found this time of year appropriate for taking a personal inventory and recognizing the many things for which I can be grateful. The experiences of the recent weeks provide a great framework for it. The blessings I’ve been given are many and the burdens are simple in comparison. The goal for me is to continue to recognize and appreciate the rewards that come from facing the day to day challenges. The opportunity is there for the taking. The first step is to keep the proper perspective.

Some really great things happened as we dealt with the breakdown in my son’s placement.  After my wife took him home from school last week, following a morning in which things went very poorly, I told some of the staff that we agreed that it was time to make the change.  A lot of discussion ensued and a staff member asked if I thought my son ‘needed closure’.  We agreed that it was important for him to leave on a positive note rather than having the last few weeks overshadow the two and one half years in the program.  I envisioned closure to mean a chance to quietly say goodbye to his teacher, his aide, a few peers, and the staff that has supported him.  The school team had other ideas. 

Earlier this week, my wife brought him back to school at the end day.  His mainstream and special ed class had all gathered for a going away party.  Good Luck posters were splashed on the computer screens in the classroom.  Teachers brought in cupcakes and cookies.  The students had made a large number of cards wishing him well.  Most were covered with pictures of his ’special interests’ that they all knew very well.  One student even sang a song.  The principal and support staff were there along with his mainstream teachers from the two prior years.  He exchanged phone numbers with a few classmates before leaving.

A week ago, he wanted nothing to do with a new school and acted as if he might be able to prevent the change from occurring.  The night of the going away party he told me he was sad to be leaving his classmates.  He’s also expressed both anxiety and excitement about his new school.  In other words, within a week, his reaction has evolved into a set of very appropriate emotional responses.  I’d even call them typical.  I’d even call his recognition of his feelings as mature.  He still has some emotional baggage about having to make a change, but to me it looks like the change in placement is already showing benefits.

We’re incredibly grateful to the staff for such a wonderful sendoff. If you’re reading: Thanks Again!

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.

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.