Saturday, June 16, 2012

Growing Up with Autism: Life Transitions, Part 3

Note: This is the third of three posts reporting on the Weill Cornell Autism Research Project (WCARP) Autism Symposium 2012 held at Weill Cornel Medical College in New York City on Friday, May 11, 2012. Usually I aim to report on events within a week or so, but May and June have been crazy busy with graduations at the college where I teach, summer session intensive classes, and our girl's upcoming graduation from middle school that this post has been postpone and postponed!  More on the girl's upcoming graduation soon, but today, the WCARP wrap up!

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Although anxiety was the leitmotif of the Autism Symposium 2012, there were moments of hope on the horizon as well.

In the world of autism, hope comes in at least two very different flavors.  The first is the hope for cures or interventions to mitigate the aspects of autism that can create profound limitations on an individual's quality of life. And the second is the hope for a world that can embrace, support and honor autistic individuals regardless of their degree of capacity.

Of course the two are not mutually exclusive: one can hope for interventions to improve a family member's quality of life and work for a world where an autism spectrum disorder does not limit a person's opportunities for a full, rich, and rewarding quality of life.  

Dr. Martha Herbert's
new book on
autism interventions
One speaker at the Autism Symposium 2012 who wove these two threads of the autism discourse together was Martha R. Herbert, a professor of neurology at Harvard University whose new book The Autism Revolution: Whole Body Strategies for Making Life All It Can Be offers parents of children on the spectrum some of the latest science on autism interventions.  Herbert observes that studies of identical twins, one with autism and the other without, make clear that autism is a condition of both genetics and environment.  That is, autism is an epigenetic condition.  

Dr. Herbert's presentation underscored that autistics are not "broken for life," and, that in fact, there are numerous cases of individuals who lose their diagnoses (and not simply because the diagnostic criteria are in flux).  One of the most interesting aspects of Herbert's presentation was her reporting on the research of Ananth Narayanan and his colleagues, whose pilot study using propranolol (an old-fashioned blood pressure medication) suggests that this beta-blocker can increase neural connectivity in the brains of autistic individuals.  

Propanolol has also recently been used in the treatment of post-traumatic stress disorder with considerable success. This, of course, made me reflect on the huge language-acquistion gains that our girl made when her anxiety was first treated with Paxil. Perhaps reducing the anxiety that comes with autism helps increase the signal to noise ratio in the brain, and therefore alleviates other life-impairing aspects of autism. The less anxiety is being transmitted over the neural networks of the brain, the more opportunity there is for other meaningful connections being made.

Along with reporting on these research developments, Herbert also underscored that autistic individuals are often mis-assessed in terms of their intelligence. Citing the work of Michelle Dawson and her colleagues, Herbert noted that cognitive impairment in persons on the spectrum is over-reported because intelligence tests that rely almost exclusively on language processing (such as the Weschler IQ test) are typically administered. A more appropriate test for assessing intelligence in autistic persons is the Raven’s Progressive Matrices. So not only are autistics not "broken for life," perhaps they are not broken at all.  Rather, many are simply be working with a very different perceptual system that heightens anxiety and affects other neurological processes.

Whether or not one imagines one child or one's self as in need of repair, interventions, healing, or cures, nearly everyone agrees that there is much more to be done in the work of creating contexts and communities where persons on the spectrum can realize their full potential and live rich and rewarding lives.  The afternoon sessions of the Autism Symposium took up these questions, but regrettably ran concurrently, so participants had to choose a session based on the age group that held the most interest for them.  I wanted to go to the 18 and above group (where our girl will be headed and for which Michael John Carley of GRASP was a speaker), but opted for 14-18 year old group that we're currently navigating and where speakers presented on resources for parents and kids on the spectrum.
Dr. Carole Gothelf of AHRC on aspirations for
persons with developmental differences 
Ronni Miller, who chairs the WCARP Parents Committee reported on inclusive programs to assist with social skills (check back at the WCARP site for slides of her presentation and the enormous list of resources she shared);  Dr. Carole Gothelf discussed planning for life after high school, and Catherine Jones and Valencia Small discussed issues of adolescence and sex education for teens on the spectrum.  As this was a small group, there was also time for parents and professionals to discuss confounding problems.

An issue that emerged from the discussion is that fact (a shocking one to me) is that there are no – zero, none, not a one – inpatient psychiatric facilities for adolescents in the city of New York.  One parent reported the crisis of navigating a medication change in her adolescent son and finding him committed to an adult psychiatric ward after she called 911 for assistance. Another breakout group participant mentioned the widely reported tragedy of a boy in late adolescence (a 19-year-old college student) whose epilepsy medication had been increasing his aggression and who wound up pummeling his mother to death. These stories underscored the on-going need to insist on better services to keep our kids, ourselves, and the many people who care for them, safe and well.

Ensuring that our kids on the spectrum have access to all aspects of a full life – work, friends, health, safety, and homes of their choice – is the underlying goal that remains constant amidst transitions across a lifetime. Programs like the WCARP Autism Symposium, focused this year on lifte transitions, help to support and facilitate this constant and ongoing work.

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