Those that walked the dirt path have something to say - those that do research need to listen.

Where’s the research involving parents of adult children with moderate to severe autism?

Autism is skyrocketing. The numbers of children diagnosed just keeps climbing year after year.  In 1988 the chances of having a child with autism was 1:10,000.  I know this because that is the year my son Matt was diagnosed.  It took an entire team of medical professionals and a full week at the Kluge Children’s Hospital to come to that conclusion.  The head of the team explained to us it was a rare condition, with no cure and no treatment – except institutionalization.  

The estimates now, in 2013, range from 1:88 to 1:36, depending on which study you read. Treatments and drugs are popping up everywhere – some seem to work well, others seem to be more of a money making scam than anything else.  Parents today are sifting through a mountain of information trying to find something that could work for their own unique child with an ASD label.  In searching the Internet you find studies on young children, teenage children and even young mildly autistic adults. The interviews on someone who is mildly autistic are fascinating - as they can explain what it is like, how they perceive the world and these types of interviews bring much needed insight to understanding the overall syndrome.  Yet, I do not find any research where their parents were interviewed......

As I search I have found that most research involves the very young, those with the classic behaviors that suggest autism –the behaviors that brought their parents to seek out a doctor’s diagnosis in the first place.  Behaviors, that parents of adult children know to be transient – they don’t last forever.  The autistic child grows, learns and finds new ways to overcome the challenges set before them – and young parents are quick to assume it is the current therapy or the current drug.  What if it isn’t?  What if their child is just ... growing up?  Parents would be able to tell the difference if more research studies involved the parents of adult children on the spectrum – those from the first early waves of the current epidemic.  Unfortunately, one rarely ever sees that kind of study  - a wealth of information untapped.

Maybe I am not being clear.  I’m not talking about blogs. I have one of those blogs myself (World According to Matt).  You know…. a place where I can write about the hurdles, the joys, the insights, the heartbreaks and the remarkable progress of my own son with autism.  Matt is 27.  We have been navigating autism for 25 years.  I readily put our entire story out there to help those in the early stages to those with autistic children about to become adults.  There are other blogs out there, I'm sure, but that is not what I am trying to push here.  What I am trying to push here is for researchers to tap into the enormous amount of information out there from thousands of parents of adult children.  Think about it.  You really want to know about autism?  Shouldn’t you know about the entire life span?  Most studies are on toddler to school age autism behaviors because the majority of autistic children are in that age group.  That means that science is missing out on at least 2/3 of the entire story.  There’s a wealth of knowledge out there isn't being tapped by those individuals and institutions who claim to be professional researchers in the autism field - on the cutting edge (ha!).  So why does no one look into it?  Isn’t it just common sense to document all the various stages of autism?  A lifetime's worth?

Maybe I am complaining too much, but come on, let’s get real here.  Who knows more about the stages from childhood to adult for an individual with autism more than the person who watched it every single day for 20-30 years? Who else could tell you what hurdles are ahead?  Who else could explain how to help someone who is non-verbal, and moderate to severely autistic to still have a great life?  Who could give you a more honest answer to what may work and what may not work in overcoming communication and socialization difficulties?  Seems to me there must be hundreds of thousands of parents of adult autistic individuals out there.  Why are their stories, their insights, their anguish and their inspiring stories of raising their child not considered in the arena of medical research? Who else can speak for those who literally have no voice?

This all hit me as I watched another documentary on WWII.  I had just seen one on the terrifing events of the tsunami, and one on earthquakes and tornadoes.  All theses documentaries had one thing in common - interviews of those who have lived through the event.  Their stories captured for all time.  That wealth of information is available and can be used by any scientist who researches various aspects of these events - even after the interviewees are long gone from this earth.  There are medical archives filled with the first hand knowledge of various diseases that scientist still use.  But there are only a few stories about individuals with autism.  Very few, (if any stories) about someone with moderate to severe autism living on their own – not institutionalized.  How do they live as adults?  What are the hurdles?  I want to know because my son is about to go on his own and I would love to know if someone else out there has a success story I could read. I want numbers and statistics.  I want probabilities and what the data says I should strive for.  Instead, I go it alone.  I rely on my gut and my own ability to read my son.  There's nothing out there for us to read-up on.  I am sure that will change as the youngest members with autism grow up.  I am sure science will eventually catch up.  They'll do their research based on these kids - and lose all that information on a generation that never took one pill or used one new therapy.  The older generation dealing with autism is the perfect control group - don't they see that?

If the children of the first few ripples of autism are now entering their 30s to 50s, think of the parent’s ages.  Many will be gone soon, their stories untold.  All that information on a syndrome that still, to this very day, has no definitive cause or cure, is slowly slipping away.  And the numbers of children diagnosed each year continues to rise. All these children will grow up in just a decade from now. They will become adults.  Will the research on how to accomplish the goal of serving the moderate to severely autistic adult wait until thousands upon thousands of them slip through the cracks of the current inadequate safety nets? 

Come on Harvard, Duke, Stanford, Yale and other top notch research institutions, get with the program already.  Start interviewing, cataloging, and investigating the experiences of those parents who have traveled the autism road long before it was road – back in the day when it was still just a dirt foot path (full of weeds, and all uphill).  Think how much could be learned – all of us, if we could ask those who provided for their autistic child without the help of therapies, drugs, and support groups how they did it?  What did they all have in common?  What was the one thing they found that no one else seems to know….yet?  Inquiring minds like mine want to know.