Reflections on Autism Awareness

Dedicated to my mother, father and my brother Josh

April 2^nd is “World Autism Day,” and April is Autism Awareness month.  From the 1940’s to the 1970s, Autism was a misunderstood set of symptoms associated with schizophrenia and often treated as the result of parental neglect. We certainly have come a long way from routine institutionalization and treatments like LSD and electroshock “therapy.”  Today, Autism is understood to be a wide range of essentially neurological conditions.  A diagnosis begins broad-brush as ASD (Autism Spectrum Disorder) and the investigation of possible causes and remedies has become serious and respectable.

My mother knew my brother, Josh, was autistic when he was two years old because in college she had worked in Boston as a volunteer with a brilliant pioneer, Fred Krell. Josh wasn’t correctly diagnosed by the psychiatrists, who were regarded as the go-to experts.  They assumed and asserted that Josh’s difficulties were her fault, that she was doing something wrong.  Through the 1980’s this was a common “diagnosis.”  It was psychiatrist and physician Leo Kanner who wrote in 1949 that autistic children “were left neatly in refrigerators which did not defrost.  Their withdrawal seems to be an act of turning away from such a situation to seek comfort in solitude.”^[1]  This gave rise to the term “Refrigerator mothers” because a mother’s supposed frigidity was thought to be to blame for the Autistic child’s anti-social behavior and inability to communicate like other children. This false stigma was still going strong through the late eighties.  Josh wasn’t correctly diagnosed until he was ten, but even so psychiatrists had no remedy or help to offer, and essentially left parents with only one option: he should be institutionalized, if they could afford it.  My parents saw how badly kids were treated in such facilities and they set out to do better.  And indeed they did.

Josh is a high-functioning Autistic.  He is a walking encyclopedia who had read all of Shakespeare by the time he was nine, can look in the sky and tell you what is a planet and what is a star and how far away they are, and what the night sky’s constellations look like – in this or a different season.  He knows eighteen languages, eleven of which he taught himself – not including the language he made up to tease me with when we were young.  A punishment for him when we were kids was that he could only have two language dictionaries at a time.  Luckily for Josh our dad is a college professor and books have always been in profusion in our home.  It is fascinating to have a conversation with him, but his different thinking makes it impossible for him to hold down a steady job or live alone without (sometimes near-constant) guidance and supervision.

It wasn’t easy, but because of my parents’ hard work and help from some angel souls along the way like Dr. Kris, who tutored, mentored and befriended Josh, he was able to graduate from high school and college and has a full life of his favorite things – books, writing, painting, walks, the satisfaction of work he can do and a home and community in which he thrives.  That community includes HOPE – a group brought together through a local church where special needs kids get together for games and activities and their parents get together for mutual support.

When Josh and I were growing up, there were no Walks for Autism, April was just another month, no one put out blue light-bulbs or wore sky-blue shirts for Autism Speaks’ “Light It Up Blue” for raising Autism awareness.  My parents learned everything about raising Josh through trial and error and hard knocks.  I know no one stronger or smarter than my mother and father, and anyone who knows the parents of children with special needs understands their heroism.  An especially trying facet of raising an Autistic child is that the tendency toward detachment means that no matter how much love and affection he receives, he may never express love and affection for his parents.

Organizations like the Autism Society and Autism Speaks are well intentioned and have done a lot to raise awareness, bring families together and help to mainstream the presence of special needs children.  But for years I have noticed that their fundraising is centered on lobbying government for research, creating policy and councils, and to provide programs and services to be funded by taxpayers.  This I think is a dead end.  Voluntary associations, not government agencies and programs, are far better equipped to help, and people who really want to help are far more likely to deliver it if they can do so in person rather than channeling other people’s money to agencies for distribution.  Government agencies also cannot do what the parents of special needs children have been doing all along.

The first incarnation of special needs government policy was the Mental Retardation Facilities Construction Act of 1963 signed by John F. Kennedy.  Revised and renamed over the years, it wasn’t until 1987 that the role of the family was even recognized in the bill now known as the Developmental Disabilities Act.

The term “special needs” is a good one because it clarifies what it takes to raise children with disabilities – there is no blanket treatment or program.  Every special needs child is different and treatment that works for one often won’t work for another.  There’s not even a blanket diagnosis: Autism is now called Autism Spectrum disorder because the degrees vary so greatly.  Some Autistics can’t speak or control their movements, some have limited or no speech, some are more sensitive to sound than others.  When my brother was little, the sound of rain was to him like machine guns, it would send him screaming and crying as he covered his ears.  It was my mother and father who developed the understanding of Josh’s needs – no government program or service could ever do or learn what they did, partly because it took loving parents being with him constantly to understand and treat him.  No government agency can replicate parents.

Government programs seem to be the worst investment for families who need help that is individually tailored. The real achievement of associations like Autism Speaks is to bring the families together.  I often wonder whether the hundreds of thousands of dollars raised by events like the Walk for Autism would be better spent by being given directly to families or by establishing private programs.

All government service programs cannot care for people the way individuals and private voluntary associations can.  Social Security, Medicare, Medicaid are all bankrupt, fraud-ridden, out of date, and in need of massive overhauls.  Foster care is an atrocity because it pays people for housing children; an agency can’t hold them accountable if they do not actually raise the children because no agency can pay them to do what a parent does.  Like the Visa ad says, that is priceless.  Public schools – capital “F” Failed. Why entrust those with special needs to the people who fail to educate all the children who don’t have special needs?  It makes no real sense for these families to turn to the entity that not only fails at everything it does, but wastes billions of tax-payer dollars doing it.

Every aspect for which the organizations lobby government could be done privately.  The couple who founded Autism Speaks, Bob and Suzanne Wright, earned their wealth in the private sector and used it to develop the non-profit because their grandson is Autistic.  This is how all charities and services used to come about.  The nation’s first hospital was founded by private citizens Benjamin Franklin and Dr. Thomas Bond and still stands in Pennsylvania.  Carnegie Hall, the Empire State building, all the nation’s original colleges, even Central Park and the Brooklyn Bridge came from individuals in the private sector.

I don’t in any way mean to malign the efforts of these organizations.  I have put that puzzle piece magnet on my car, I’ve done the Walk for Autism in years past.  It is wonderful to have these non-profits bringing families together, connecting them to vital resources and information to help them on the journey.  Today’s parents of special needs children don’t have the uphill climb that my parents did, they don’t have to figure everything out themselves.  That is the real accomplishment of these organizations, bringing our greatest resources – each other – together.