A view of autism from along the spectrum

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.

This isn’t a post about constructing barriers. Instead, it’s about the constraints that the physical walls of the school buildings place on our children’s educational programs.

The change in placement that my son is going through includes a move to a new school. He needs to leave behind a lot of relationships and start over with both staff and peers. He will also need to change schools again next fall as he moves to middle school. By the time he starts sixth grade, he’ll have changed schools 5 times since kindergarten. A typical child will make only one change during this time.

Our school district is fairly large and a lot of resources are available. However, at the elementary school level, the staff with the strongest skills and experience with autism are concentrated in a single school (out of a 10 elementary schools). We’ve been able to tap into the district resources on a consulting basis, but it’s now necessary to move the child to where the adults are.

I’d love to see more outreach from this cluster of expertise into the other schools. I know other parents who have children on the spectrum and their children’s programs are limited based on the experience of the school team. It seems like such a waste to see staff struggle with how to put a program in place for a child and know that there are experienced resources just a few miles away that could help.

I know this issue is not unique to our district and that most districts also focus their autism resources into a single school. There are many benefits to this arrangement but it’s also time for districts to get a little more creative. The districts need to provide more effective programs for children throughout the school system.

In my line of work, we use a lot of very common technical tools to build teams that cross very large geographic barriers. We also hop in our car and drive when we need to work with people locally. I know the school systems are also capable of implementing district wide programs when it is necessary. It’s time to do so.

We have too many tools, too many experienced people, and too many children with autism to let something as minor as the walls of the school building stop us from reaching out.

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!

I gained enough material for blogging this week to last at least a month. This week one of the boys’ school placements fell apart and came to an end. It collapsed in dramatic fashion, with lots of trips to school, lots of emotion, and more than a little heartbreak.

The drama was intensified by the effort the entire team put forth trying to hold the program together for him. There have been so many positive moments, so many signs of growth, that we all probably held on too long. The warnings were there for a while, and everyone kept making adjustments up until the end. While we all did this with the best of intentions, it put my son in the difficult place of having to work that much harder to let us know that it wasn’t working.

Watching the emotional struggle that he went through the past few weeks was the heartbreaking part. He struggled with a program that was very familiar to him, and he struggled again when he knew it was time for a change. We know it will work out, but there’s no shortcut to working through the challenges that come with the change. We will work with the school to minimize the impact but we can’t eliminate the change. We tried to avoid it for the past few weeks and we know it didn’t work.

It’s only been about 36 hours, but we’re starting to move forward. We all expect him to flourish in his new placement and will meet next week to formalize it. His resistance to the change is melting away, and signs of enthusiasm are beginning to show.

There’s no cause here for placing blame. I hold high expectations for the school district. I let them know when I think they fall short of those expectations and give credit and thanks when they meet them. I recognize that educational placement for kids on the spectrum is complex. There’s no magic formula to determine what placement will work for each child, how long it will work, and how we’ll know it exactly when it’s time to change. I know I can live with the ambiguity. However, none of this knowledge reduces the heartbreak that comes from seeing my son struggle.

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 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.

Every so often, I experience an epiphany and something with which I’ve struggled to master suddenly becomes intuitive and obvious. Over the past several weeks, I’ve had several, all relating to the nature of learning.

At the end of the past school year, a behavior analyst presented a suggestion to the school team for my ten year old son. He encouraged the team to try a completely positive reward system in which positive behaviors were acknowledged, up to two hundred times a day. A ‘token’ would be provided for each occurrence and the tokens could be used for a more tangible reward. We immediately implemented a system for both summer school and home.

The same son and I are currently taking an obedience class with our dog. I’ve found teaching an animal makes some aspects of learning more obvious. I can observe without the interference of emotions, judgments, and similar mental clutter that can cloud my view of my own, or my children’s, learning.

The epiphany was this: Aside from innate skills, all learning breaks down to repetition and reward. Forget about everything else, start with these two things and we’re on the path to success. It’s true for learning how to hit a baseball and it’s true for learning behavior appropriate for the classroom.   But please don’t think I’m comparing my children to dogs!    :^)

Of course, the type of repetition and reward must vary. Visual learners will need visual supports as part of the repetition. The amount of repetition needed will vary between persons and situations. The reward also changes. It’s amazing how positively my son has responded to the praise and positive feedback throughout the day. My initial thought was that several hundred times a day was too much and that the tangible rewards purchased by the tokens would become to important. I sure was wrong.

As I thought about it more, I realized that hearing so much positive feedback is exactly what my son needs right now to help him build positive behavior habits to replace some of the negative ones. I watch him closely as he ‘lights up’ after getting positive feedback. I can see the sense of pride building in himself. He goes out of his way to do things that both earn tokens but also earn the praise and feeling of pride. It’s obvious to me that the praise and pride are a bigger deal to him than the tokens.
We’re using the same token program with our six-year old, mostly to prevent sibling rivalry over ‘tokens’. The reward has much less impact on him as the reward (praise and tokens) don’t mean much to him. He’s a different child, in less need of behavior changes, and not motivated as much by positive feedback.

The cycle of learning gets to be really fun as I teach the boys how to teach the dog. Training a dog requires the boys to shift from learners to teachers. And I change to teaching them how to teach the dog and we talk about reinforcement and giving the dog positive feedback. It’s an interesting shift in roles for all of us.