strokes and autism

I'm just finishing an amazing and easy to read book "My Stroke of Insight" by Jill Bolte Taylor. In her descriptions of her disabilities from the stroke, I am so aware of the similarities between the stroke victim and a person with autism. 

Jill Bolte Taylor was a Harvard trained brain scientist who, at only thirty seven, had a massive stroke that effected the left hemisphere of her brain. With her neuroanatomy background, Dr. Taylor is able to describe her inabilities during her slow recovery - but also her new insights, not available to her before her stroke. She describes not being able to talk, but being able to sing, difficulty retrieving words, but tuning into other's emotional state. The biggest difference here is that persons like Dr. Taylor have a wealth of life time experiences upon which to draw during their recovery (when recovery is likely). Whereas a person with autism is either too young when the autism strikes or never is able to develop or understand a cognitive awareness of his/her surroundings.

The most striking thing, though, in Dr. Taylor's description of being on the "right" side of her brain, is the feeling of Nirvana she had; feeling one with the universe, like "fluid.....and in flow with everything around me." She found when she didn't tune into the left hemisphere's "brain chatter', she was able to see a completely different world, filling her with inner peace. She also described her focus on the present, and how every moment she had was rich with experience and existed in complete isolation. She notes how as each new moment happened, the "details of the past lingered in an image or a feeling, but quickly disappeared." The Zen like experiences of our students come to mind, and their contentment to be in "their own world". I thought of Clara Claiborne Park's book "Exiting Nirvana" about her daughter with autism, essentially describing the same thing, and even using the word "Nirvana". We know the students with autism prefer to lapse into reverie, and drawing them out can be anxiety provoking. 

This book was well worth reading for anyone who works with people with autism - it is encouraging to hear about the plasticity and resiliency of the brain, but also in Dr. Taylor's arduous recovery, she describes how she was able to overcome some of the very similar disabilities as we see with autism. 

study to follow families

A network of autism researchers, the Early Autism Risk Longitudinal Investigation, (EARLI) will be following 1200 pregnant women who already have a child diagnosed with autism. The good news about this study is that not only will they be looking closely at genetics and biomarkers for risk factors, but also possible environmental causes. A number of studies have been or are being done on genetics, but not enough focus on environmental triggers. That makes this new study most encouraging, though results are far off yet. Two California centers, the UC Davis MIND Institute and Kaiser Permanente of Northern California will be of the four centers involved with this study. You can read more at: http://www.medicalnewstoday.com/articles/153229.php

The best laid plans...

We all know that none of us can predict the future. But when you are responsible for another person's welfare, that unpredictability must figure into your plans. And everyone needs a back up plan for the unforeseen events that can wreak havoc in anyone's life. For no matter how fabulous your intentions may be, if you are not able to implement them - for whatever reason - your good intentions are lost.

This has been brought home to us once again at Morgan Autism Center. Here's the story. A forty year old autistic adult client has lived all his life with first both his parents, and when his mother died ten years ago, his widower father. His father, out of respect for his wife's dying wishes, promised his wife and  that he would never place his son in a group home. And until a week ago, the plan was the two of them, father and son, would live together until.....until what? No contingency plan was thought about nor talked about to prepare this autistic man for the traumatic change he would have to face should he suddenly need care away from his father. And because he has some health issues, let alone behavior and anxiety issues, this care is not easily done by anyone.

Now his father is suddenly very seriously ill and needs to be hospitalized. Its Memorial Day weekend. The Regional Center has a crisis team, but no home ready on such short notice for this client, who is traumatized by the uncertainty and shocking change to his life. A cousin who lives locally (but who has his own two year old and had no expectation to take this on) is stepping up for a few days. But then what?

Everyone needs a contingency plan. We all have to cover our bases for when the unexpected happens.

Autism Epidemic/Flu Pandemic?

In a study released this week by the Department of Developmental Services, the number of children  with autism served by the California Regional Centers from 1987 to 2007 increased from 2,701 to 34,656, a 1200% increase. The state's general population increased by only 27 % during that same time span. Not all children with autism are being served by the Regional Centers, so these numbers are understated.

Compare the recent response of the CDC and local public health agencies to the swine flu and the possibility of a worldwide pandemic to the complacency of the autism epidemic news. Because autism in individuals unfolds relatively slowly over the first year of life, for some reason, there does not seem to be same urgency or sense of emergency that we get from the possibility of a flu pandemic.  But why is that? Is it because autism is a chronic condition? 

According to the Autism Society of America, autism costs are about $90 billion each year. Shouldn't this be as compelling as any flu epidemic, effecting so many fewer people?

autism and genius - how 'neurotypicals' can benefit

Its not often you find an article espousing the virtues of having aspects of autism- and furthermore suggesting an understanding of autism might be utilized to release 'flashes of genius' in those of us who are 'neurotypical'. Yet that is exactly what I discovered while reading the latest edition of The Economist (April, 18 -24th) in the article "Genius Locus". In a study published last week by Dr. Patricia Howlin in the Philosophical Transactions of the Royal Society, Dr. Howlin addresses this idea. Because one of the characteristics of people with autism is their restricted, repetitive interests and activities, they can have savant-like skills in certain areas. Dr. Howlin suggests that these obsessional interests and repetitive behaviors allow them to practice excessively the particular skill of their interest, thus sometimes attaining  superior ability. So, to follow that logic, if one practiced  mathematical puzzles or a musical instrument for hours each day, one could conceivably achieve expertise such as might be seen in an individual with autism. There is much more to the article than genius and savants and well worth exploring further. Check it out!

What to do when the school bus stops coming at 22 years

What options do families have for their adult children with autism after they turn twenty-two? Support services for adults with autism are few and far between, if they exist in some places at all - so scarce, that school districts are usually very little help in offering guidance to parents of what to expect for their child. Will the student be able to work independently, through supported living, or need an adult day program? And what are the housing options, - besides very limited?

Consider that autism is a lifelong disorder requiring careful treatment specific to people with ASD.  And that the wave of people with autism about to age out of the California school system is only a few short years away. What to do? I think we may have a problem here! 

As this is Autism Awareness month, it is increasingly important to remember that autism doesn't go away after 'early intervention', which has been the focus of attention in recent years. Although most children do get better over the course of their lives with intense services, the autism remains, however it may manifest itself. I was very heartened to learn of a senate bill introduced by Senators Durbin (D-Il) Casey (D-PA ), and Menendez (D-NJ): the Autism Treatment and Acceleration Act 2009 (ATAA) http://www.autism-society.org/site/news2?page=NewsArticle&id=13301.  ATAA would create many services for adults with autism- vocational, employment, housing and transportation to name a few. This is something for all of us to get behind!

Autism Awareness Day

Today is worldwide Autism Awareness Day, and perhaps a time to reflect on how far we have come in understanding autism - and how far we have yet to go. There is so much we need to know to understand why there is such an increase in the incidence of autism. And so much planning to be done as the crest of the wave of young people with autism ages out of the school systems and still require services. 

This month, the April edition of the  magazine "The Advocate" of the Autism Society of America focuses on the lives and perspectives of people with ASD. One article "Accepting and Valuing Difference" deals with the mundane activities that are rarely mundane for persons with autism, work, families, and what is referred to as the "culture of autism."   The authors state that their hope is to offer information that might help the greater community to discover new ways to "integrate the information and perspectives we offer into their daily life and work, with the common purpose of building bridges of understanding across all segments of our autism community."

Because so many more people with autism are mainstreamed and/or participating in many more ways in their communities, it is incredibly worthwhile to hear from those who write of their own experiences with ASD. We all have much to learn as we try to be more inclusive of our differences, because in many ways, this will be how we, as a community, will best manage the huge numbers of people with autism.