Taking the IDEA for granted

We take some of our information about autism and expectations for programming for granted. But in reality, we have come a very long way in the last 35 or so years. When I first started teaching, the idea of an IEP was brand new. The IDEA had yet to be written. Before the IDEA in 1975, there was no financial support for students and the burden for education was on the family. And even once the IDEA was established, parents still struggled to get school districts to understand the unique quirks of their children. Frequently they had to fight with their school districts just to get that to which their child is lawfully entitled. And sometimes, they still have to fight.

Over the years, we have had requests for time to be spent learning about our program from many quarters -  school districts, parents, educators. We are always glad to share information with others. But there are some places where our information can have a tremendous impact. We have had contingents of people from China, Uganda, Ireland, Japan, Korea who are struggling to develop effective programming for their students with autism. And most are doing it without much support from their governments, with the parents often being the driving force in their child's program development - much like parents in the United States prior to the IDEA.

We are very pleased this next year to be welcoming two interns from Viet Nam: one a school director had visited us once before and this time, will be with us for two months. The other is a teacher and will be with us for 5 months. They just got their visas approved and are elated to be coming. And also they are very excited to be able to come to the Morgan Autism Center Annual Conference on September 22, 2012, and attend some of our lecture series.

No one should have to re-invent the wheel in these days of the internet and Youtube. But there still is nothing like the real time training of being in the classroom and working directly with the students. So, we welcome our newest interns and are thrilled to be able to spread the word on how to create a successful program.

Back from vacation...

How lucky are we to be able to say that our job working with some very unique people is of course challenging, but also very fun? We got back from our two week break, and the students and clients are happy, staff are cheerful, and everyone is busy, busy! Summertime is particularly fun with opportunities to go to the movies, swimming, water play, and today a terrific field day. This first week back was both enjoyable and a test with most students and clients excited to be back, and the challenges of a few new students, who are slowly catching on to their new routine. And how is it that some of these adolescents can grow so much in just two weeks???

For the field day, there was our wonderful siblings group who had prepared and manned a game with little stuffed animals as a prize; the Animal Assisted Happiness group with the very tame (and real) goats, chickens, bunnies and guinea pigs; and each classroom planned an activity so the students could rotate throughout the field day. There was face painting, the 'shaving' station, ring toss, water balloons - and often it was hard to know who was having more fun, staff or students. Then we had an opportunity to christen our new BBQ grill, made specially in memory of Elizabeth and George. The grill worked great, and Lester, Elizabeth's husband and George's dad, came to assist our own BBQ master, Doug, with the grilling of the hot dogs. Everyone had a very good time - it was just that kind of a day!

Creating Apps for Work for People With Autism

For those students with autism who have the technical abilities, but not the social skills to negotiate a work setting, there is a a very interesting model at a non-profit center in Dallas, housed at the Southern Methodist University. Called the NonPareil Institute, about 80 adults with autism are learning how to design and program apps for iPads, iPhones and Androids: http://www.computerworld.com/s/article/9225562/Institute_s_mobile_apps_are_built_by_hands.

This program was started by three fathers of children with autism who were concerned about how their children might be able to be employed considering their challenges. Now these adults have already developed one app for the market and have two more in the pipeline. The parents are currently hoping to build a campus for the program. It is so gratifying to acknowledge that while different, people with autism have skills that can help them be contributing members of society and not just consumers. It is a entirely new way to view autism. Finally, we seem to be getting somewhere in letting the world know that unique capabilities are a strength. Looks very exciting and such potential!

Employment Options for Autism

"Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will spend its whole life believing that it is stupid."    So said Albert Einstein. Unfortunately, the education system is woefully behind in recognizing the untapped potential of people with autism. They have unique abilities. They are able to sustain their attention on their preferred activities and interests for inordinate amounts of time. They appreciate and thrive on routine, rote work. They have a phenomenal ability to focus on details. These are all characteristics that can be applied to a work setting, given the social support that is also needed.

There are issues, clearly, that need to be worked on. Being organized, arriving to work on time, dressed neatly, hygiene issues - all of these are areas where the person with autism needs guidance. But is that impossible?

I recently learned of a Danish group called "Specialisterne" who are looking to create a program for people with autism here in the bay area. It sounds like a great model, with lots of potential. And also a group in San Francisco called the "Specialist Guild". So, with the tsunami of children aging out of schools and no place to go but day programs, we all should be looking at these models and exploring others. There must be a way to help our students not be 'consumers' of resources, but contributors. We should not be viewing them as a burden within a community, when that can be an unnecessary state. They have many ways that they can be more active participants in the world and they sure aren't going away. So, we need to figure this out!

Being Aware of Autism

We have certainly come a long way in raising awareness of autism from the days when I first started working with these kids 35 years ago (35??- really???). I would tell people I worked with autistic kids and they would respond with "oh, are you artistic yourself?" And then a lengthy explanation of what autism was in response to suggestions that these children were really emotionally disturbed, brats, spoiled, rude,  etc. Now, most people know or have some idea of what autism is and accept that it is not caused by 'refrigerator' mothers. And usually they are aware of someone who has autism - a family member, neighbor, friend's child. But as the saying goes, if you know one person with autism, you know one person with autism. They are all so different!

The increase in awareness is very evident when speaking to young people of child bearing age. Coming from a large family (there were 10 of us and 5 in my husband's family), I have 36 nieces and nephews. Since they are all aware of what I do, I get lots of questions regarding their chances of having a child with autism and they are very concerned. I know I would be. The chances of 1 in 88 children having this disorder is downright scary. While there is likely a very strong genetic predisposition, there is something or things in the environment that is triggering the autism to manifest itself. Until we discover whatever these things may be, no one will or should rest easy. The consequences for all of us are far too great. The lifetime economic needs, not to mention the emotional strain and loss of productivity in a family can be extreme. So, while its great we have definitely increased awareness, there's still much to be done to solve this incredible enigma. 

The Rise in Autism's Prevalence

All over the news today is the CDC's reported findings of a significant rise in the numbers of children being diagnosed with autism - 23% in cases from 2006 to 2008 and 78% since 2002. The incidence is now 1 in 88 children, and with boys, who have five times the rate as girls, the incidence is a shocking 1 in 54. Some of this is due to better diagnosis and increased overall awareness, so parents are more likely to request an assessment regarding concerns of their child. Hopefully, this new research will lead to some kind of standardization of diagnosis, so there will be fewer children being denied the important services they need and deserve. There is no question that this is an epidemic, yet there still is no real understanding of the causes. It is very frightening and certainly would give young people pause in their family planning.

It is good that research is finally focusing more on the relationship between genes and the environment rather than just genetics. Unfortunately, there are no medical interventions to date; the only intervention is educational. And the reality is that services are lagging sorely behind. There is so much to be done. The world is not at all equipped for this phenomenal number of children coming along. http://yourlife.usatoday.com/health/story/2012-03-29/CDC-Autism-is-more-common-than-previously-thought/53856542/1

The Toll of Caretaking

Two weeks ago, our small community experienced a horrific tragedy with the murder-suicide of a mother and her autistic adult son. Although we can never speculate as to the mindset of any another person, I believe we can likely assume that the stress of caregiving may have played a part in this very sad event. At a grief counseling session with the parents shortly after this tragedy, many there spoke of their own excessive anxiety and stress levels. They expressed understanding of how it was possible that a parent could be driven to do something so drastic. 

There are so many stresses in caring for a child with autism. Mixed in with a parent's constant sleep deprivation, frustration, loneliness, and frequent isolation is the worry of who will take care of their child when they die. These parents know that their kids are not easy to live with. Who besides a parent can love a child unconditionally and tolerate all their behaviors and quirkiness?  Parents also recognize with brutal clarity how vulnerable their child is to exploitation and even abuse, especially those who are on the more involved end of the autism spectrum. 

In most situations, it is the mother who is the primary caregiver and often must forego the opportunity to work outside the home or maybe only allow for part-time employment. Women typically have a difficult time admitting or even recognizing that they may be under insurmountable stress in the best of circumstances. Compound that with the additional problems of caregiving and we may have an insight into the kind of 24 hour on-call life these parents experience. But women are not the only ones stressed. A child who requires constant supervision for safety, hygiene and overall health will tax the emotional resources of an entire family.

As the caretaker, the parent does not have much time to reflect on what the future holds. They tend to take on each day one at a time. But certain milestones will force awareness of the passage of time – as children of family friends get their driver’s licenses, go away to college, marry. All are reminders that these are not the cards the family of the person with autism has been dealt. When a parent actually takes a moment to process this information, it can be overwhelming. When will it ever end? Will it ever end?

Some possible lessons learned from this tragedy are that we have all have to help one another, especially keeping in touch with other parents who really know the day to day struggle. Also, as those of us who work with these students, we would want the parents to know how very much we care for all of them – students and their families. Our staff was so significantly devastated by this sad and shocking event, it surprised the family completely.  Would that we had known! It is in our nature to want to help, so take advantage. And should a child be placed in a group home, we would watch very carefully to look for changes in behavior, food, dress, anything that might alert us or the parents that something may be amiss. Yes, it would be different, and it would never be the same or replace home, but that doesn’t mean it is not a reasonable option to allow parents to experience their child in a different way.

We miss the two who died tremendously and think of them with very heavy hearts. My only hope is that others will pay more attention to families who are struggling and even check in on those who seem to be doing fine. Because we all know caretaking for a person with significant disabilities is not at all easy.