Autism: a tragedy

When Evie was first diagnosed with Autism, I went in search of an online community for parents of Autistic kids.  What I found was a whole bunch of parents moaning about how Autism had ripped apart their, otherwise perfect, families.  At first, I felt really sorry for them…and really lucky that I had an incredibly easy kid. I stayed quiet and listened but the more I read, the more I was convinced that the misery they were complaining about, was mostly of their own making.

I saw an unspoken competition play out where parents earned martyr points based on how their Autistic kids were screwing their lives up.  I finally would chip in to the conversations with carefully worded suggestions about changing their thinking from a place of negative to a place of positive.

I was quickly lambasted and told that I was a bad mother.  Because I didn’t fight, fight, fight Autism.  Because our whole world didn’t revolve around therapies. Because I hadn’t tried xyz diet.  Because I dared to think that Autism is not a death sentence or a tragedy.

I chose to isolate myself from those communities.

For the past fourish years, we’ve been doing our own thing.  My only goal is to raise healthy and happy children.  We build our life around that.

Evie is six years old.  And when you’re six years old, and already going to school 5 days a week, your time after school and on weekends should be spent doing things that you love.  So Evie does an adaptive swim program two days a week because she is actually part fish and is happy in the water.  And all of the medical stuff that comes with Evie is scheduled during school hours as I do not encroach on her free time.  Ever.

Evie is sensory seeking.  I believe that is how she takes in information about the world around her and that she uses her senses to help cope when things are overwhelming.  I don’t try to dissuade her from that which is instinctive to her.  So that means if Evie wants to squish jello between her fingers and toes, that’s what she does.  And I don’t worry about the mess.   And if she wants to spend 10 minutes exploring a heating grate in the doctor’s office or the rubbery handle of the grill in her back yard, that’s what she does.  And I don’t worry about being ten minutes late or the pile of dishes in the sink (although it would help if my husband would put the dishes in the dishwasher instead of the sink) .

When Evie flops to the ground, I don’t worry about getting her to her feet or making her stop flopping.  I worry about answering the need that she or her body is trying to communicate. Her flopping is not an inconvenience to be dealt with.  A behavior to fix.  I am not a lazy mama who doesn’t set boundaries.  I am the proud mama of a small human being who is worthy of my respect and honor.  She deserves to be accommodated to have her needs met.

You will never hear the words, “I love Evie but…” come out of my mouth.  There are no buts when you truly and unconditionally love your child.  I don’t do a lot of things well, but I am very proud of the fact that I love every inch of both of my children.  And I do that well.

I am not without parental stress.  No parent is. I worry about Evie’s co-occurring conditions like her Epilepsy.  I worry that she doesn’t have a sense of danger.  I worry that she is over-scheduled.  I worry about her when she leaves the protective cocoon that we have built for her and goes out into the world where she is not given unconditional respect as a person.  I worry that she does not have a more sophisticated method of communicating as of yet.  Evie does not stress me out.  Dealing with other people about Evie does–and there are too many people to deal with and there is too much red tape to hack away.

But I would certainly lose at the parental martyr game.  We are not living a tragedy.  And would you believe it if I told you that I have an easier time parenting Evie than I do Maxine?  Because that is true…and Maxine is not a hard kid to parent either.  My marriage is not being ripped apart by Autism.  I cannot actually remember ever having a single argument with Scott about Autism or Evie.  Because we are united in our mutual love and respect for her and our unfaltering desire to raise happy and healthy children.  Our time is not consumed by endless therapies as we have no desire to see Evie perform like a trained chimpanzee.  Life is pretty good because we usually go with the flow.

100,000,000 parents  would tell me that I am doing it all wrong.  And I might listen if they seemed happy.  If they seemed like they enjoyed their children. But the people that are telling me how wrong I am about every possible thing, are the same ones that are so caught up in the tragedy of Autism and the misery of their existences as parents of Autistic kids.  No, I don’t have all the answers.  And I’ve gotten more wrong than I’ve gotten right.  But my kids are both happy.  I’m happy.  And at the end of the day, I know that I am getting the important things right.

So thanks, but no thanks, you can keep your  copy of “How to Ensure that Autism Destroys Your Family.”  We will write our own book.

15 thoughts on “Autism: a tragedy

  1. It just breaks my heart to think what the parents who are dedicated to “fighting Autism” are doing to their children. Because you can’t fight one and not the other. They really, really don’t want to see that the two are so intimately intertwined that you probably can’t separate them, at least not without significant damage to your child…plenty of people have tried, and some of those grown children are now writing about how badly they were hurt.

    So much more good could be done if we could see autistic people as simply a different kind of person, who have always existed, who simply have different developmental needs…which are not tragic or catastrophic even when those needs are very intensive or radically different from the expected norm.

    • Most importantly, they are damaging their children. But they are also damaging themselves…and making themselves miserable. I cannot imagine the damage it would do to me or to Evie, if I would wage war against her very nature every single day. As a parent I cannot imagine NOT having the instincts to protect and nurture my child’s nature.

  2. Evie has got an awesome family and the sort of family I would wish for every Autistic child! (for every child of any neurotype, actually.) I am so much in love with your family and with Evie and excited to see more stories of how she grows and becomes more wonderful every day.

  3. I hear you! That part of the autism community is loud and bold and kind of like a bully. My boy is not imprisoned by autism, he’s not someone different underneath the autism, he’s not going to be cured, he’s just who he is and that’s the boy I love.

      • Likewise! It’s an amazing journey to be on – one that has changed and is changing me. It’s always good to hear from other people/families who feel the same way. We may not be as loud, but we are definitely out there 🙂

  4. Apart from just loving this whole post, also I love it where you say Evie is part fish. That made me really happy. Whenever we say “fish” in our family, we sing this song, an old Scots folk song about fishies and boats, and dancing and singing. We sang it when the boys were in the womb and they still know and love it, and I maybe over-love it and have ever since I first heard it long before the boys were born. So that song came into my head. I will sing it to you when we meet in real life. I want to meet you in real life.

    • I can’t wait to hear it! Evie really is part fish as she would spend her entire life submerged in water if she could–and she pretty much does just that in the summer. I want to meet you too and hope it won’t be long before I have that chance.

  5. It seems Evie and I have a lot in common: epilepsy, “flopping”, crumbling things (I still crumble bread), a different way to communicate (she will find hers). My parents also worried about the things you did. I am happy today, because I have good support.
    You are a good mom, this attitude will be important when Evie grows up and maybe goes out in the world, or, like me, live with someone else. The way you introduce her to others – and the example you give them on how to respect her – make a difference in their perception

  6. Is Evie gluten free?

    I applaud your attitude, glad your kid has you . . .

    My Hugs has ASD, gluten makes his life much more difficult. When he gets glutened, his hand flapping gets worse, frustration threshold lowers, gets more locked up, harder to speak.

    • Thank you for your reply. Evie is not gluten free. She doesn’t seem to have any gastro reactions to it.

      I would like to respectfully point out that for many Autistic people, flapping and other types of stimming, is something that they need to do in order to cope. Flapping can be an expression of joy, it can wake up your body, and it can serve a host of other purposes. I hope that you will give some consideration to the benefits and even necessity of stimming.

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