Sue Rubin

NLM Foundation Meeting on Self-Advocacy Boston May 3,2002

 

            It’s very interesting to examine why people with autism who use Facilitated communication are not more active in the self-advocacy movement.  We people have major problems with our motor systems as Anne Donnellan and Martha Leary have been saying for years.  You might wonder what motor problems have to do with self-advocacy.  The answer is in the cerebellum.   According to Margaret Bauman in The Neurobiology of Autism (p.136-139)the cerebellum of people with autism is abnormal.  This explains a multitude of our problems including the inability to plan ahead (Bauman, p.138). 

 

            The relationship between movement and thought is extremely interesting.  When I read the article “The Bodily Basis of Thought” by Jay A. Seitz, (http://www.york.cuny.edu/~seitz/newideas.htm), I was shocked by the ability to explain autistic problems as a result of neurological abnormalities especially in the cerebellum.  Actually I can see all of my problems are the result of the cerebellar abnormalities. 

 

            According to the Seitz article “recent findings indicate reciprocal and parallel neural pathways between the cerebellum and the frontal cortex where working memory and executive functions such as planning, monitoring, task management and focusing attention occur” (p.5) Problems in the cerebellum cause “cerebellar cognitive affective syndrome” (which ) is linked to disturbances in language (e.g. agrammatism), personality (e.g. blunted affect), spatial cognition (e.g. deficits in visuospatial memory), and executive functions (e.g. difficulties in planning) as a result of disruption of network connections.  The posterior lobe is associated with cognitive processing.  Basically I believe Gene’s inability to recognize line drawings when he was replicating the Wheeler study was due to this. (see Contested Words Contested Science p.126)

 

            We people with autism have problems initiating actions so even if we want to do something for the self-advocacy movement or anything else, we can’t.  This really is not because we are lazy or disinterested, it is because of the neurological abnormalities.  Again, according to Seitz, basal ganglia defects and deterioration of the substantia nigra, locus ceruleus, and raphe nuclei in the brainstem that upset dopamine pathways, result in cognitive as well as motor deficits… the ability of shift behavioral set, this is, initiate action,(italics mine) underlies the production of novel behavior or the amalgamation of patterned behavior into novel sequences……..repetitive stereotyped movement patterns (eg. Obsessive-compulsive behavior…) indicate the malfunctioning of this system (p7).

 

            The amygdala is also abnormal in autism according to Margaret Bauman (p.130).  In the Seitz article he writes “with regard to motor initiation, voluntary movement selection and initiation form an embedded system consisting of the rostral portion of the cingulated motor area which is innervated by the amygdala and ventral striatum,….(p.9)

 

            The neurological elements determine what we are able to do without outside intervention.  Just like facilitation being necessary for us to communicate, we need assistance from the outside to enable us to execute plans.  In California we receive services from the state through the Department of Developmental Services’ Regional Center System.  Under this system we each have an IPP or Individualized Program Plan which is like an IEP for adults.  I don’t know how other states work but I propose that we include self advocacy as part of the IPP.

 

            Perhaps we also should recognize that our self-advocacy does not have to look exactly like other people’s civil rights advocacy movements.  Several of us give frequent presentations at universities, inclusion conferences, supported living conferences, and self-advocacy conferences.  We reach a lot of people when they see us presenting with FC.  That is a self-advocacy statement in itself.