Autism: A Community Divided

My son was diagnosed with autism in 2002, back when Autism Speaks was still Cure Autism Now and Jenny McCarthy was still posing for Playboy.  The anti-vaccine movement was already very much a thing, even before McCarthy jumped on the bandwagon.  I remember feeling confused and scared, and being inundated with anti-vaccine literature, and feeling guilty about pretty much everything I’d ever done.  We’d tried the GFCF diet, long before gluten-free was trendy, when waiters would look at you like you had three heads for requesting gluten free, and family members loudly worried that I might be “starving” my child.  It didn’t work, but that doesn’t mean it never does.

Now he’s 16, and we’ve all come a long way.  At first, I really wanted a cure.  I worried about his future, about school and bullying and everything that goes with it.  And yes, I wasn’t crazy about public meltdowns, or the lack of speech, or the fact that the usual child-rearing advice didn’t seem to be working.  Yes, I grieved, and felt sorry for myself, and I can still fall back into that from time to time, but that does not mean that I hate my child.  Show me a parent of any child, autistic or not, who claims to have never felt sorry for themselves and I will show you a liar.  It’s called being human.

I’ve been on this road for quite some time now, and I’ve seen a lot.  Vaccinate/don’t vaccinate, medicate/don’t medicate, ABA vs, Floortime, vs. RDI, vs. some new “miracle” therapy nobody’s ever heard of, the list goes on and on.  The autism community seems to be divided into camps, and members of each group can be quite unreceptive to any point of view that challenges what they think they know.

A big one these days is neurodiversity vs. seeking a cure.  Proponents of neurodiversity believe that autism is not a disorder, but rather is an alternative way of being, and that attempts to find a cure are harmful.  Others argue that autism causes significant difficulties that keep individuals from living full, independent lives, including communication and social challenges, sensory issues, and medical conditions that tend to co-occur, and that it would be irresponsible not to seek help.  Neurodiversity advocates like John Elder Robison and Ari Ne’eman agree that co-occurring medical issues should be addressed, and that therapies aimed at creating a better quality of life are appropriate, but those intended to decrease autistic characteristics are not.  Which therapies and approaches are acceptable and which are not is still a matter of debate.

I’ve read many well-written, thought-out arguments on both sides, and frankly, I come down somewhere in the middle.  I no longer seek to cure my son’s autism.  It is a part of who he is, and it is likely a part of his amazing artistic abilities.  I also realize that we are fortunate to have a son who is verbal, if not conversational, and who is not aggressive or self-injurious.  That said, I still intend to do everything in my power to help him have the best possible future, including medical treatment of seizures and working on his social skills.  And I don’t judge other parents, many of whom are dealing with significant, serious challenges, when they make choices that are different from mine.

I also believe that individuals with autism have the right to be heard.  Any organization claiming to represent a population should absolutely include members of said population in their hierarchy.  Could you imagine an organization claiming to represent African-Americans, or homosexuals, that did not include any members of the very group they are claiming to represent?  It happens in the autism community.

However, there are individuals on both sides, both autistic self-advocates and parents who believe in finding a cure, who cross the line, who make the online autism community a dangerous, divided place.  Newsweek recently published an article titled The Debate over an Autism Cure Turns Hostile, about Jonathan Mitchell, a 59 year-old man with autism who has received death threats for publicly stating that he wants a cure.  That’s right, death threats.

I’ve seen ugly things all over social media, autistic self-advocates who accuse parents of hating their children for seeking treatment, parents calling each other “stupid” and worse over differences of opinion.  I’ve seen nasty trolling campaigns, name-calling, and all kinds of ugliness.  But a 59 year-old man with autism receiving death threats, for stating an opinion that he has just as much right to as anybody else, takes thing to an entirely new level of crazy.

What is going on?  How did the autism community become so vicious, and so divided?  Where is there a place for calm, reasonable discussion, where everyone’s opinions are taken into consideration, even if they are not necessarily shared by all?  And how can we expect the NT community to offer respect and consideration when we can’t even do it for ourselves?

Even though there are a lot of areas of disagreement, I think we can all agree on certain things  Here are a few:

  • We all want a world where differences are accepted, and even celebrated.  Parents want a world where their children will have a chance for happiness, independence, and quality relationships.  Adults with autism want the same.  We may not always agree on how to get there, but name-calling and death threats within the community are not going to do the trick.
  • We are all doing the best we can.  People with autism have challenges, and those of you who are out in the world, getting your voices heard and doing the best you can: awesome.  As parents, we want this and more for our children.  Parents of children with autism also have challenges.  It’s not easy to raise a child that doesn’t fit in to the world’s perceptions of what is “normal” or “appropriate.”  We are human beings, and yes, sometimes we even feel sorry for ourselves, but this does not mean that we hate our children, so please stop making comments to that effect.
  • We all want the proper supports and accommodations that will allow people with autism to participate and flourish in society.  We want employers who can see the strengths people with autism can bring to their businesses, and who are willing to make accommodations that allow them to be successful.  We want police officers and first responders who understand the difference between autism and suspicious behaviors.  We want to be able to go out in public without stares, whispers, and judgmental looks.
  • We all want people with autism who are suffering from co-occurring medical conditions to get the help they need.  Even those who don’t believe that autism is a disease that needs a cure agree that medical issues such as seizures, severe anxiety, or gastrointestinal disorders require medical intervention, and for those of us who are raising children on the spectrum, it is sometimes necessary to do some guesswork when you have a child who is not able to explain how their symptoms are affecting them.

I’ll bet if we open a dialogue, and dig even deeper, we can find even more areas that we all agree upon.  In the meantime, let’s stop fighting.  Let’s stop it with the name-calling, the trolling, the my-way-or-the-highway attitudes.  We don’t always have to agree, but let’s agree to listen, and to give each other a chance.

Parents, read some of the blogs by autistic people.  While no one else can truly speak for your child, they can give you insight into the mindset and feelings of those who are living with autism.  Sometimes we can get so wrapped up in what we perceive as the fight that we forget our children are living, breathing human beings with a point of view of their own, even if they can’t always express it to us.  These people have a valuable contribution to make, and they have the right to have a say in issues that affect them directly.  Give them the respect they are due.

People who are autistic, understand that most parents are sincerely doing the best they can.  Raising a child in today’s world is not easy, and raising a child with differences is even harder.  Offer advice from your unique point of view, but don’t judge parents for sharing their worries, their heartache, and even the things they dislike about autism.  Don’t accuse them of hating their children because they’ve chosen a route different from the one you think they should have taken.  And please, stop attacking other people with autism who disagree with your position.  It is absolutely appalling to me that people like Jonathan Mitchell are living with harassment and death threats.  He has just as much right to his point of view as anybody else.

I have to believe that there is a way for us to find common ground, even when we disagree.  If we can’t do it as a community, how can we ever expect the rest of the world to follow suit?  I don’t claim to have the answers, but I do know that fighting and bullying are not going to make things better for anybody.  Let’s open a dialogue.  Let’s talk, and even more importantly, let’s listen.  It’s a start.

Opinions expressed by Autism Daily Newscast Contributors are their own. Comments on individual articles in this series are closed but we encourage readers to add their thoughts on the opening article to this series that can be found here.