Why Parenting Blogs About Autism and Grief Don’t Sit Well With Me

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I am autistic, and I have autistic children — and yes, I get it.

I get that sometimes it can be hard.

I understand that it’s frustrating as a parent not to understand what your child wants, and it can hurt to see your child left out of things by their neurotypical peers.

I used to feel like that. It would sadden me to think that my son couldn’t attend a birthday party without having violent meltdowns and that a simple trip out would prove so problematic.

I’ve noticed on social media recently, there seem to be more and more posts where the parents are lamenting the child they have “lost,” saying autism has taken their joy. That they hate autism and grieve for what their parenthood and their children’s childhood should have been.

They proclaim they are “warrior moms” battling their own children’s autism.

Yet they don’t seem to realize that their children are autistic, that autism isn’t a separate part of their child  it’s not an outside entity that has invaded them.

It’s part of their neurological makeup and affects all that they do, how they react and what they feel.

I can’t say, “Oh I behaved that way because I’m autistic,” or “I’ll just leave my autism to one side for a moment so I can interact more easily.” It doesn’t work that way. I am autistic all the time, happy or sad.

Now I can see how to look at things in a different way: The birthday parties my son couldn’t attend and still cannot would give him sensory overload. Too much noise, crowds of children, bright lights and presents that aren’t for him would have immediately produced a meltdown. No fun for him or the host.

I realized it was myself I was sorry for, not him. For him, it would have meant an overwhelming experience that was unpleasant.

Now we go and see a child a week before the birthday. I discreetly hand over a gift that my son has chosen and he enjoys some time with his friend without lots of other children, singing and overload triggers. There’s nothing wrong with that.

For his own birthday, he has a cake but no candles or singing. It stays cut into slices in the kitchen for him to help himself to. He has his presents wrapped in plain brown paper and he chooses them himself, therefore reducing unexpected surprises and anxiety, as well as no overload with bright colors.

And he’s happy — he’s happy because he’s listened to and he’s comfortable.

The trips out he found hard? Ear defenders for noise sensitivity and a chewy for oral seeking and anxiety. We pick something for him to look for, and if he or my little daughter need to sink to the ground to regulate themselves, I sit right there with them.


I believe these posts and blogs that depict children as missing, lost or to be grieved for do harm. They reinforce the idea that autism is an epidemic, a tragedy and an illness to be recovered from. They show the child as a burden and someone the parent should be pitied for having to raise.

We are not missing, lost, ill, an epidemic or a disease.

Celebrate your autistic children. If they cannot verbalize communication, aid them with signing, picture communication cards, typing or communication apps. There are ways.

Your child is a person in their own right; they have opinions and dreams and should not be written off. Be mindful that what you post on the Internet can and will be found years later. I suggest only posting what you would not mind your child reading about themselves.

Treat them with the respect you would expect to be treated with.

Cherish their neurological difference, and never make them feel “less.”

They are and can be so much more — just believe.

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Comments

  1. Fiona O'Leary  August 27, 2015

    Dear Emma
    I just love this article and it is so well written and so wise.
    It is so important to understand our children instead of trying to alter them.
    If parents just did that their lives and their children’s lives would be so much better.
    Thank you Emma for being such a great Advocate for the Autistic community.
    You are a treasure.
    Fiona xxx

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  2. Cambria Jenkins  August 27, 2015

    I was one of the apparently few lucky ones who was accepted for how she was, by my mother, that is. My father, I will get to. I am glad for it, too, because coming up around us and saying we are broken, missing or otherwise an unacceptable burden makes us believe we are, as the Nazis described outsider populations (and I am not kidding), “life unworthy of life.” Even I have had to fight this sad rejection from my own father, who never accepted I had anything different about me, and neither do any of his relatives.
    Let me put it this way: Warrior Parents breed Rebel Children.

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  3. cheria hay  August 28, 2015

    Very thoughtful and enlightening. Thank you for sharing this.

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  4. Laurence  August 28, 2015

    This helps. My son just turned 3 his diagnosed with global developmental delay. The state system does not recognize this to be a disorder. Our GI suggests that miles is in the spectrum of Autism. How do we did out?
    Forever grateful

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  5. Connie Mistler Davidson  August 28, 2015

    I agree with the author. A child is the sum of ALL of his parts. The autism is part of the child, and sometimes it is a very large part. Cherish your child. Without the autism, the child would not be your child; he would be very different.

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  6. Wise Grannie  August 28, 2015

    So clear and sensible! It is reallly worrying how some people write about their children online. I always think how they will feel about it, especially should their friends/school or college mates/work colleagues come across these blogs. You don’t own your children and are not entitled to write up their private life for public viewing.

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  7. vaspider  September 8, 2015

    Thank you. Thank you. Thank you.

    I came across this from Tumblr, and this is… nearly perfect, yes, as a summation of how I feel. I am autistic (adult diagnosis) and my diagnosis only happened because one of my sons is also autistic (my blood-child, not my adopted son).

    There are parents who talk about taking away their child’s stim toys in public — or at bedtime — and I’m like — but why? Why should my son twirling a pencil in class be a problem? Because you KNOW it is stimming? If it is a safe toy, then it should be fine. And if the current stim toy is not safe, then find one that is. You are the adult, you have the responsibility to help your child. I don’t view finding safe stim toys to be different from or less important than buying your child comfortable shoes which fit them: you are equipping them to go out into the world, and without that equipment, they will be uncomfortable and possibly even hurt by the experience.

    I am thankful I never went through a ‘cure’ stage (I was afraid I had wanted to ‘fix’ him at one point but my husband laughed and said, no, you always insisted he was perfect, and that the world should accommodate his amazingness) – but I can understand why some people do go through it. The predominant monologue (it is not a dialogue and we are not invited!) by dominant forces about autism (Autism $peaks, etc.) is of treating us as a plague. Though, I am seeing more parents chiming in with ASAN phrases & supporting their children. I am hopeful for the next generation, our children and their children, that they may come out from the shadow of A$, the stigma of Kanner’s self-serving, I want to publish papers ‘refrigerator parent/psychosis’ nonsense, and the lies of Wakefield, and into the light that Dr. Asperger always knew of his patients — that they exist on a spectrum, that they can be accommodated into the world, and that they (we!) are worth helping to be the best we can be.

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  8. Heather Beattie  October 6, 2015

    Emma you are such an inspiration and help so many parents understand their kids. This is fantastic xx

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  9. mark kent  March 31, 2016

    I have aspergers .do a blog details below

    reply

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