The Cult of the Autism Mom

Cult – an instance of great veneration of a person, ideal, or thing, especially as manifested by a body of admirers.

One wouldn’t think to look at the social group comprised under the heading of “autism” as a likely place for cults, but if you peel back the layers and examine it closely, that is exactly what you will find.

When my family became part of this group, I did what every other autism parent does, which is to spend vast amounts of time on the internet researching, looking, and praying for interventions to help my son.  Wading through the information is a huge undertaking considering that a Google search for “autism interventions” will yield you 2,070,000 results.

Finding the intervention that works best for your family requires a commitment to trying and discarding different approaches until something feels like a fit for your family, and especially, your child.  This means exploring different therapy approaches, such as Floortime, ABA, and Play Therapy.  It may also mean exploring specific dietary regimens, such as GFCF.  For some, a biomedical approach works best.

What you don’t realize on this journey is that you will meet other parents, and most of them will have strong opinions about the “best” approach for a child with autism.  If you explore biomed, you will encounter these moms who call themselves “Warrior Moms”, and they worship at the altar of Jenny McCarthy.  Yes, the same woman who posed in Playboy.  This group is determined to find a cure or “recovery” from autism for their child.  That’s all well and good, and certainly it’s their choice to pursue treatment that works for their child, as long as it’s not harmful.  But it’s not enough that they have their own course of action, if others don’t follow that same course, they will categorize you as being the “victim” mom, who enjoys the attention that our children’s autism brings us.  Because, you know, it’s non-stop admiration from other people, right?

In fact, battle lines are drawn all over the autism map.  The adherents to ABA therapy will find a very vocal group in opposition to the ABA method.  Those whose child attends public school may be derided by the worshippers of homeschooling.  Autistic adults take autism parents to task for all the wrongs they’ve ever endured, and the participants on each side stay right where they are, feet firmly planted, refusing to meet somewhere in the middle.

Some create a cult following by penning blog post after blog post condemning someone else, or some corporate entity, for some egregious wrong they believe has been committed to the autistic community.  They do this by honing in on a benign statement, such as “preparing my child for the world”, and then they take those words and, through the magic of creative writing, transform that caring parent into someone that doesn’t believe in the capabilities of their child, and doesn’t provide them the security and love of just being a child.

Between all the talking heads, standing on their soap boxes, is the rest of us.  The parents that go quietly through their daily lives, doing everything possible for their child, and feeling battered and beat down.  We are the masses that don’t believe in magic elixir cure-alls, nor do we believe that by not allowing our child to be aggressive we are not accepting their autism.

On the contrary, those that continue to teach their children how to interact with, and take part in, the world around them are not refusing to accept them for being autistic, but are instead TREATING THEM AS EQUAL TO NON-AUTISTIC CHILDREN by teaching them the very same things we teach typically-developing children.

But what is a parent to do when faced with such a hostile landscape?  All we can do is tread lightly, with our head held high, and refuse to drink the Kool Aid.  When someone believes so strongly in their approach or method that they have to make others wrong or put others down to present it, then it loses its appeal very quickly.

I, for one, am weary of the autism war, waged by the varying cult factions.  Where we should find a community united in promoting acceptance and understanding, we find a group divided, distracted with petty bickering over approaches and semantics.  Where the motto should be “do what works best for you and your family, as long as it’s not harmful”, we find “do it this way because THIS is the best approach.”

The good news is that the extremists and cult leaders are relatively few, and the families in the middle, just living their lives, are many.  We will be the ones that make the difference in our children’s lives, and in the world of autism, because we don’t take an extremist approach, but instead we seek a collaborative approach.  We welcome others instead of alienating them.  We share information instead of forcing it on others.  We love and parent our autistic children just as we do our non-autistic children.  And we find ways for our children to be part of the community not by throwing the word “autism” in people’s faces, but by introducing them to our child first, and not their diagnosis.