Sunday, July 18, 2010

Facing Autism Reality Is Not A Choice; It Is A Challenge That Must Be Faced

Facing autism reality is a huge challenge.  It is difficult on a good day. But it is not a choice. It is what must be done or autistic children and adults will suffer.  

In the case of parents our children will suffer if we do not face autism reality head on, acknowledge what we do know about autism as it manifests itself in our children and deal with it, each and every minute of each and every day. We know that in most cases autism, despite the Hollywood movies, and the success of high functioning exceptions, means a lifetime of dependency, residential and even institutional care.

As a parent  of a 14 year old son with Autistic Disorder and Intellectual Disability,  I do not have a  choice to NOT face autism reality every single moment of every single day.  I have written on this site, and provided pictures. of self inflicted bite marks on my son's hands and windows in our house broken by those same hands.  I have written about the time several years ago where we could have easily lost our son, who we love dearly, because I was distracted by a telephone call and was unaware that Conor had slipped out of the house across a parking lot and main street busy with automobile traffic that he did not know how to negotiate.  I have written about the incredibly intense fear and guilt that I felt arising from that event. and from my failure, on that day, to do the very best that I could for my son.   I have posted many pictures and told many stories on this site about the great joy that Conor brings to our lives each and every day. Some of those pictures are posted on the side bar of this blog.
So what do we know about autism or more accurately about autism disorders? We know that in most cases of Autistic Disorder autism is a disorder which severely limits and restricts the abilities and opportunities to enjoy life of those who suffer from it.  We know that for those with Autistic Disorder serious communication and behavioral challenges must be faced. We know, to quote CDC autism expert Dr. Marshalyn Yeargin-Allsopp, that the "vast majority" of those with the original Autistic Disorder also suffer from intellectual disability.  We know that that two recent surveys by the CDC reported that in fact 41-44% of ALL persons on the autism spectrum suffer from intellectual disability a figure which is watered down below the majority line by the fact that the Autism Spectrum includes persons with Aspergers who, by diagnostic definition ,are not intellectually disabled or cognitively impaired. 

In terms of treatments we know that the intervention that enjoys the most evidence in support of its effectiveness is and has for many years been Applied Behavior Analysis or ABA. We know that there may be other treatments and interventions that are helpful in treating autism that have not been researched well enough to provide the evidence base required for widespread acceptance by the public health authorities.  We know that parents facing the challenges of helping their autistic children have tried various methods including biomedical interventions and report significant improvement in their children.  We know that as parents their observations opinions are given little or no weight by "scientists" for whom direct observation has been replaced in the scientific method by  sometimes flawed epidemiological studies and by personal attacks on parents whose observations are inconsistent with scientific consensus.

In terms of autism research we know that our knowledge of what causes autism disorders has been held back by an almost cult like, unscientific and obsessive belief that autism is 100% genetic. We know that funding for research has for decades been dedicated overwhelmingly towards genetic focused autism research with little to show for it. We know that funding for autism research has been directed away from possible environmental causes of autism, and of course away from assignment of responsibility for any possible toxins whether injected, swallowed or breathed into our lungs which might have contributed to or caused neurological damage in our children. Better to blame the parents' genes or age then to admit that maybe corporate self interest or governmental negligence might bear some responsibility.

Those of us who are parents know that life will not be rosy for many of our children severely affected by autism disorder no matter how many Hollywood movies are made portraying autism as a gift and no matter how many well connected, barely autistic, inexperienced in life university students  are appointed to US government committees. Subscribing to nonsensical, autism is beautiful ideology will not help our autistic children.

As parents we know that we must face autism reality by doing our best to help our children overcome their autism challenges and the self interest driven misrepresentation of autism that dominates public consciousness of autism.  As parents we know that we do face autism reality every day and that we do our best to help our children even if , as I did that day my son left our house and faced the dangers of automobile traffic, we sometimes fail.

In facing autism reality we must also keep in mind that there are those who help us along the way. My son has benefited from educators who have accommodated him in our neighborhood schools and who have worked hard to understand his challenges and worked with him. The teacher assistants who have worked with my son have been a blessing.   My son, and many other autistic children in New Brunswick, have benefited from people like Dr. Paul McDonnell a clinical psychologist who directly educated and guided many of us as parents and worked directly with autistic children.  Many autistic children have benefited here in New Brunswick from the caring and dedicated professionals at the Stan Cassidy Rehabilitation Center autism team and from the UNB-CEL Autism Intervention Team and Ann Higgins.  Even politicians have, here in New Brunswick, Canada,  been very helpful with both major political parties instituting positive changes while in office.

I know personally that even strangers  will sometimes help.  On the day Conor wandered out of the house and into potentially deadly automobile traffic a gentleman stopped his vehicle and helped him into a nearby convenience store where, after calling 911,  I found him safe and sound.  The man who brought Conor into the store waited until I arrived and then turned and walked away without identifying himself.   

Facing autism reality is a challenge but it can be done if we are honest about it and do not subscribe to  Neurodiversity ideological nonsense  that make us feel better but does little to actually help those with autism disorders.  It can also be done by researchers and public health authorities if they choose to abandon the "it's gotta be genetic model" for funding autism research and dedicate more research dollars towards finding causes, treatments and cures for autism disorders.


Anonymous said...

Well said and so true. I am going to e-mail my MLA and ask about Adult Residental care. Is NB working on this file??


Claire said...

Wonderfully written, Harold. It is well done to make these things so very clear.

farmwifetwo said...

I keep waiting for Estee Klar and TAAP to jump on the editorial bandwagon... since she was right there about autistics not being the sum of their genes... It's on the front page of the Toronto Star today...

Welcome to "reality" for many autistic children.... It's not allowed in schools - I flat out asked one day - but instead they suspend them for days... Weekly.