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The Cult of the Autism Mom

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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.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

25 responses »

  1. *fist raised in solidarity*

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  2. I wrote two entries on this recently. I do have opinions on what I think is right for my family and what I think about autism in general, but I’ve come to learn that bickering with others about their differing opinions never helps anything or anyone. It’s gotten to the point to where it just looks as if people are looking for a reason to find fault and fight. I want no part of that atmosphere.

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  3. Love this! But, I don’t want to totally throw away my plans to eventually take over the Autism community in the form of a cult leader. I’ve got three kids to get into college in the upcoming years and I’m going to need to find the cash to do that somehow. 🙂

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  4. I try not to get caught up in all of that. I do what is best for my son, and that works for us.

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  5. Yes. This says it all. And it does so perfectly.

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  6. This is SOOOO confusing to any family like mine just coming into this and wanting to do whats right.

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  7. You’ve hit the nail on the head with this one. The thing is, most parents want to do what’s best for their kids. End of story. What Vicki said is so true—just coming into this can be scary and all the angst that goes along with the bickering within our community can make a person sick, and leave them wondering what is going on and feeling more isolated than ever before.

    Love ya like a sis, Flan. Well said.

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  8. Nailed it!
    *virtual fist bump*

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  9. You put so well what is always on my mind. There are lots of things I want to say but won’t. I just know which group I fall into and I’m good with that. Thanks for this post, Flan. You’ve left me about as speechless as I get. 😉

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  10. I disagree with your “leave it to Jim to parent his own children approach”. In case you weren’t aware. . . I have no IDEA what the fuck I’m doing!!!! You’re just going to let me keep doing that????

    Lazy.

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  11. *claps* and then gets out of chair for standing ovation. Yes, yes, yes!

    Reply
  12. I love this! We are so happy to remain anonymous in the middle.

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  13. Here, here….or is it hear, hear??? Um, what you said! Great post!

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  14. Can I get a HELL YEAH?!

    Thanks for saying this Flannery. I’m glad someone finally found the words!

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  15. I am proud to “stand in the middle” with you, Flan.

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  16. *eyeroll* Cult. As if.. HELLO. I am a goddess! You should all be worshiping meeee!

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  17. Now if there was only a support group for those of us who walk the middle road. All too often, the support groups feel so hostile, except for those like minded people we find online.

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  18. What you said. This post is spot on.

    Reply
  19. great post! i had turned my back to mummy blogging when life and the impending diagnosis of my son simply was more important for me than the petty ‘mommy wars’.
    now back on the blog, and reading! i am confused, indeed, to see all this.. autism parent wars?! fortunately, i am slowly finding these ‘other’ parents, those that seem to be actual thinking & caring people and not just loud talkers with an agenda or a product for that matter. people who also have a good laugh and a real life, with ups and downs AND with autism in their family. these are the people that give me hope. not those who are advertising cures, courses, books, or – as a matter of useless information when your child HAS autism – yet another theory on what causes autism (yawn!).

    Reply
  20. karenaspergersmom

    You totally stole this from me. I wrote this post in my head. Love it!

    Reply
  21. Pingback: Autism In The News, 2012, Week 35

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