Our favorite four legged friend is gone!

Last Friday was our last day with Kona, the wonderful golden retriever who has been a daily participant at the Morgan Autism Center for 15 years. To the very end, Kona faithfully provided our students with a sweet disposition and calming presence. Kona had a unique communication between herself and the students that can only be described as magical. Our nonverbal students were able to interact with her in ways they often were unable to do with others and Kona somehow always understood their intentions. Through Kona we were able to elicit more language from many of our students as well as to teach social skills. Occasionally, Kona's presence would be called upon to enable a student to maintain an emotional equilibrium if having a tough day. Kona would always come through for us.

Kona's owner was our Director of Student Services, Judi Campbell, who generously allowed Kona to be part of our program. Many of the students and clients came down to the office daily to see Kona, and often Kona would join them for walks. Judi spent a great deal of time, especially in the early years, facilitating Kona's relationships with the students. Kona seemed to understand the limitations of the students from the very beginning and was always accommodating in ways that could teach us all to learn how to better interact with one another. Kona taught students who were initially frightened of all dogs how to be in the same proximity safely, no easy feat! While she was playful and lively at times, (for, after all, she was a dog!) she never pushed her boundaries when the students were around. Kona was a great motivator for many of our students: to encourage them to exercise a bit more, to get to spend time with Kona after doing special jobs, or to have the opportunity to play catch with Kona and her toy. Kona loved to play with her favorite toy, which she would toss into the air, and dance around the courtyard proudly carrying it with her head held high to balance it across her nose.

Dogs are delightful companions, but Kona was even more. She was a devoted friend to our students, staff, parents, and visitors. Of course, Judi was the center of her universe and we are very grateful to Judi for having shared in the delight that was Kona. We will all miss her but what a gift to have known such a wonderful animal.

Back to school!

Our staff have been here these last few days and weeks busily cleaning, making materials, schedules, calling families all in preparation for the return of our students tomorrow morning. Its back to school! With some moves among our staff to work with different children in new classrooms, there is an infusion of excitement and energy. And though we've only been gone for 3 weeks, for some of the parents, its been a LONG time - much longer than the calendar indicates! A few have stopped by in the last couple of days and mentioned their not-so-silent anxious anticipation for the school year to get started.

I think most schools and their teachers look at the beginning of the school year the way the rest of the world looks at New Year's. We set goals, make resolutions, expect improvement and plan, plan, plan! We are determined to work harder to get it right and aim for what's best. We look forward to the coming year with new ideas, better ways to achieve our goals, and excitement of re-connecting with our students and meeting the new ones.

The rooms have been scrubbed, things tossed or re-arranged and organized, staff have been briefed, files read, parents called, buses lined up - and I think we're ready!

Autism and the Law

While recently on vacation, I had two people save me articles written about people with High Functioning Autism or Asperger's syndrome. Both involved serious problems with the law. But the conflict in both situations was very similar - were the accommodations required for these people to function pushing the boundaries of what is acceptable and therefore above the law? They raise the question of how our society should respond to the growing number of adults with autism and whether enough is being done to accommodate their behaviors - or is too much being accommodated and therefore excusing what would typically be unacceptable ?

Here are the situations:

Simon is 25 years old, graduated from high school, an obsessive sports fan, who becomes very upset when his favorite teams lose, or when he misperceives a social situation with his neighbors and feels slighted. So, he screams and rants outdoors, sometimes in the middle of the night, from 10 minutes up to an hour. After many years, his family's neighbors, while trying to be understanding and sympathetic, have had enough. They have had to call the police to stop Simon from screaming and yelling and he often directs his rants to specific neighbors, not always the same ones. After responding to between 50 - 100 calls, the police and the neighbors finally felt something had to be done. The police began assessing "nuisance" fees to the family to prod them into a more permanent intervention. This nuisance ordinance had not been set up for such a situation, but it turned out to be a "tool of last resort to remedy a difficult, sometimes agonizing standoff between the family and their neighbors, " according to Peter Krouse, who reported on this in the Plain Dealer ( Sunday, August 14, 2011). The family was charged more than $6,500 because of their son's outbursts, which they fought in a bitter battle in an appeals court.

Of course, the family feels wronged and dismayed over the perceived lack of understanding on the part of the neighbors. However, the neighbors were people who had known this boy since he was young, and all expressed compassion and sympathy for the family. But enough was enough.

The solution the family settled on was to send their son away to Utah to live with other people with disabilities. The neighbors felt that without a punitive consequence (the assessment fee) for their son's actions, the family would bring their son back home and he would continue with his pattern of disruption.

From what I could glean from the article, Simon's night time rants could be very direct towards specific neighbors, screaming about why they wouldn't let him come into their house to take pictures or why they wouldn't invite him to visit. The targeted neighbors felt unnerved by his yelling and knew they couldn't reason with Simon. The parents felt they had tried everything, from taking away favorite activities to confiscating his cell phone. But as anyone who knows autism knows, logical consequences are lost on a person with autism. In fact, they likely will only increase the agitation and compulsiveness of the autistic person, thus aggravating the situation even further. So, the police would be called and that would put an end to his rant.

My take is that the call to the police became part of this young man's routine and that was what would finally bring closure to his rantings. The inability to understand logical consequences has to be the most frustrating thing about dealing with a person with autism. If you don't understand the why and the wherefore of a situation, and you have a very compelling need to follow a routine regardless of the consequences, you are destined to repeat the same mistakes over and over again. The only successful intervention is to provide the person with an alternative response that achieves something close to the goal they are trying to reach. And the alternative will need to be practiced over and over. When that fails, it is usually most effective to remove the person to a completely different situation and carefully monitor them so the old behavior won't begin again, thus enabling them to develop a new and positive and adaptive behavior pattern. By moving their son to Utah, I would hope the parents were able to achieve this. But should they bring him back to his family home, they would have to either expect that he would revert to his old behaviors, or if given very careful and thorough supports maybe he could overcome his compulsion to scream at the neighbors. Clearly, there are no easy solutions.

The second situation is more complex. In this case, the man with autism is much more sophisticated. As reported by David Kushner in IEEE Spectrum (a magazine for technical insiders, not about people on the spectrum) the U.S. Government wants to prosecute Gary McKinnon for hacking into classified government information. Gary is obsessed with UFOs and was convinced the government was hiding alien antigravity devices and other technologies. He wanted to release the information to help all humanity. In Britain, where Gary is from, the case has transformed him into a cause celebre. Why? Because Gary has Asperger's Syndrome. As Rhea Paul of the Yale School of Medicine Child Study Center states in the article, "There have been an inordinate number of young men with Asperger's who have gotten in trouble with the law. Its difficult for them to intuit moral decisions that may come more easily to others." And that is where the difficulty lies. What is the role of Asperger's in his crime? And is it a crime if he has Asperger's?

Many of Gary's supporters in Britain have rallied outside of Parliament with picket signs, created "Free Gary" T-shirts, websites, and all the usual fanfare for issues deemed to need publicity. Even the former Prime Minister, Gordon Brown has weighed in saying Gary deserves sympathy.

Sympathy maybe, but does that excuse what potentially could have been a dangerous consequence? Does Asperger's become the new insanity defense? And what about someone with bipolar disorder or schizophrenia? Many people with Asperger's have the cognitive abilities to plan and carry out criminal behavior, of that there is no doubt. But because of their limited social abilities and understanding the gravity of the consequences, should they get a pass or a more lenient sentence? Provocative thoughts and certainly requiring greater awareness of the potential for trouble. I expect we will hear much more about this issue in the future.