The Importance of the Social Impact in Autism

A recently published research paper in the Journal of Child Psychology and Psychiatry conducted by a group of investigators from the University of Connecticut found a small group of children , originally diagnosed with autism had managed to learn to function as well as their typically developing peers, without any symptoms of autism.

This is a very unusual scenario as people with autism seldom lose their symptoms, though many show progress and improvements, particularly with intensive interventions. Outcomes for these children can vary significantly, but not typically to this level. And of course, we always wonder was the child misdiagnosed in the first place? The study addresses these concerns, but interestingly notes that those children who were initially diagnosed with autism, but who were noted to have a mild social deficit, were among those who were in the optimal outcome group. To me, that explains a lot. Of the three main deficits characteristic of autism, (communication, repetitive behaviors/interests, social) it is the social deficit that so defines the disorder. If a child can learn the "mechanics of interaction, the skills we use in daily social situations in all areas of our lives" as Temple Grandin says, this will have a huge positive impact on the child's life.

Although we don't know the exact interventions the most successful children in the study were offered, I would expect that there was a significant emphasis on social skills and making social connections. Once the broad frameworks of social awareness develops, real relationships can be forged that are meaningful and continue to build on themselves. This is so critical to a child's success in the world.

It is encouraging to see some of the very strict ABA programs beginning to recognize the importance of the social/cognition connections. It has certainly been what has been missing in the past with these methods and techniques. It seems that maybe now interventions are seeing the significance of a more naturalistic approach to facilitate a better awareness of social situations and social thinking.

Autism and Violence

Though we are all reeling from the unspeakable tragedy of the Sandy Hook Elementary School, I think it is imperative to note that there is no likely link between Autism, Asperger's and the violence that occurred last Friday. The sadness of the day is overwhelming and will be for a very long while.  However, in my opinion, the focus should not be on autism, but on providing the necessary supports for people with mental illness. Services and meaningful help in this area are sadly lacking. And even then, it is important to realize that the majority of people with mental illness are not going to do what Adam Lanza did. No one has definitively said that Adam had Asperger's and if he did, I believe he also had some other comorbid but undiagnosed disorder. That said, it is clear that some people with autism may display aggressive behaviors occasionally. But it is completely different from the kind of violence exhibited in Connecticut. There is no evidence that connects this planned and intentional violence with autism. Naturally, when you have significant trouble communicating, as people with autism do, and then get frustrated, one might resort to an angry response or outburst to a situation. This might involve hitting, throwing something, pushing someone and most likely, the episode would be over relatively quickly. Of course, there are times when a person with autism may unintentionally hurt another in an angry response, but it is not with forethought or malice. The anger or aggression displayed is usually just to stop the other person from causing them frustration and/or anxiety.These responses typically are reactive and impulsive to a specific trigger and given space and some time to calm down, everything will be back to normal. It would be highly unusual for a person with Autism or Asperger's to have the considerable forethought to plan, organize and then follow through with an event such as we saw last week. It would be a grave injustice to persons with autism and/or Asperger's to connect that with the horror of the shooting of 26 people.

Our hearts are so saddened by the death of so many innocent children and adults. And we hope that someday soon, our society will have realized that we cannot allow people with clear distress signs continue to slip through the cracks.

Holiday Get-togethers

A few days ago, I was lucky enough to be able to host a luncheon at my home for three of our longtime clients, Wanda, Chuck and Jeff, and five of their former teachers, who have known these clients since they were children. True to their nature and interests, Jeff had the menu planned practically the day after we had our annual luncheon with the same group last year. Wanda's focus was on finishing holiday cards on the drive down and to get her four 'posed' pictures in. Chuck talked all the ride to my home about his excitement at seeing the Caltrains tracks and of one teacher in particular. And once he saw her, he quickly engaged in asking his questions about who worked in what year and where did they move, and why didn't they tell him before they moved on.

For such wonderful friendships that have lasted over so many years, I certainly feel fortunate. As we ate our food, the conversation was certainly all over the map, but lots of laughs over very fond memories and the many non-sequiters that tend to pop up when so many people with different life stories get together. Our shared histories will always keep us on common grounds.

As we parted ways, we all made plans to do this again next year, though none of us can know what the next year will bring. But our time together adds one more lovely memory to our life experiences. I do feel very lucky.

Nurturing Talents

This weekend, I attended the Friends of Children with Special Needs (FCSN) Gala. The highlights of their program were the children and clients with special needs dancing, singing and performing dramatic skits. This was in front of an audience of 1,000 people with noise, lights, music and lots of action. There was no shortage of distractions and opportunities for someone to be overwhelmed by the many activities going on.

The acts FCSN presented were received enthusiastically by a very appreciative audience, many of whom know first hand just how much work it takes to get those kids ready for prime time. But they were ready and did a very inspiring job. Some are just happy performers, but some are extremely gifted. For a person with significant disabilities to have the opportunity to showcase their particular talents for others is a rare, but wonderful experience. It is an accomplishment we should not overlook. And we should do everything in our power to offer many more chances. Its good for all of us to nurture our talents and celebrate our capacities to share these with others. And it leaves us feeling the world has just been made a slightly better place!

Heart-Alliance Autism Network Sino-US Exchange

Yesterday, we hosted a tour and luncheon for 15 visitors from Beijing. Most were parents, but also a few professionals were among the group. They were all participants in the Heart Alliance Autism Network Sino-US Exchange Program. This group is fairly recent for China and much needed for families and people who have been feeling very isolated and hopeless with their children with special needs. When I visited the Stars and Rain School in Beijing in 2006, I was struck by the determination and resilience of these families, given the lack of government support.
They are true pioneers in the field of special education in advocating for their children. Even with this alliance, however, it is plainly evident there still is a very long way to go for services to be provided via governmental support.

The group from the Alliance toured our classrooms and carefully noted the materials and instructional work of the staff, asking many questions and looking to implement techniques and ideas in their own work. At lunch, they were full of questions about the IDEA, IEPs, IPPs and all things related to the services our students and adult clients receive. But mostly they wanted to know how best to help other families not feel the overwhelming sense that there is no one else with the same problem. Though we have come a long way here in California, I don't think we're anywhere near where we would like to be. Many parents here still feel isolated and desperate for better services. China seems like it is where we in the US were before the IDEA and the Lanterman Act were passed, both amazing civil rights laws. Yes, things are better here, but far from perfect!

Adding a little variety

This morning, one of our adult clients, Christy, stopped in to hand me a note she had written. In large bold letters, she wrote, "NEXT YEAR! IN OCTOBER MARK ON YOUR CALENDAR! LET'S TAKE ANY ONE STUDENT AND INVITE ME FOR LASAGNA PICNIC AT YOUR HOUSE OR A LUNCH OUTING AT....." and then she lists her favorite local restaurants, of which there are many. The adults in our Adult Program always take the first Monday of each month to go out to lunch. Every year, Christy has an idea for me in October that she has usually planned since the previous October. This year was no exception and so Christy and I and another client went to Christy's lunch choice that first Monday in October. Christy knew exactly where she wanted to go, what she was going to order, and what she wanted to drink. We had a nice time and no sooner were we done, Christy started planning where to go and what to do next year. This is a very determined young lady!

At the same time, Jeff and Wanda are asking me about the date for our annual holiday luncheon which we've done every year at my home for the last 5 years. Its become a tradition for them. Like Christy, Jeff has had the menu planned since last December right after our last luncheon.

These events seem like such a small, easy thing for me to do, not a big deal and easy to dismiss as not important. But not to Christy, Wanda or Jeff. For them its a very big deal because they are reliant on others for much of their social lives. And their world is very small. It makes one realize that the little things we might take for granted - a trip to the store, a swim at the Y, a coffee run to Starbucks, - even a BBQ lunch here at our program are all special events to look forward to. As they say, variety is the spice of life!

Social Stories with Non-verbal Students with Autism

Social Stories, developed so cleverly by Carol Gray, are useful not only for students who are verbal, but also can be helpful for non-verbal students. Obviously, they need to be adapted, perhaps as pictures but also could be with written words if the student is able to read. We should never underestimate the ability of people with autism to understand regardless of ability to speak and/or read.

As we focus on our expectations in a social situation when trying to teach the student, we must recognize the goal is to increase the social awareness of the individual. First the student must know exactly what is happening. If the student has accurate and specific social information, we can then help them process that information and hopefully influence a change in their behavior. We would do this through a visual presentation of the situation and what we expect. Of course, we very likely will have to be explicit and not make assumptions about what the student has observed (and we know that social observations by our students are VERY limited). But probably most important is that we don't make the assumption that because the student is not verbal or minimally verbal, we can't use a modified form of Social Stories.

Information is important to all of us - the who, what, why and how of our social interactions is critical to move successfully throughout our days. It works best to take the time to explain what is going on and what our expectations are of the student's behavior.

We are very fortunate to have Carol Gray as our keynote speaker at our annual conference on Saturday, September 22. She is an excellent and engaging speaker and I know will provide much needed information for teachers, speech therapists and parents. Check out our website www.morgancenter.org for more information.