Autism – we need to ask a different question

You do know I am the next step in evolution?

Master J says this to me often.

He hates it when we watch programs on TV that talk of eradicating autism, like autistic children are the scourge of society.

“Why is it that people love X-Men, Mum, want them to win, despite their mutations, but they want to eradicate me and other children like me?  Why is it that we are considered worse than people who have powers that can kill on a whim?”

I explain to him that it is the narrative, the way the story is told, that it isn’t real, that if mutants were to become a reality, they would be met with contempt and ignorance and fear, much like autism.  I tell him it is our job, our responsibility, to dispel that fear so that people can better understand the humans behind the diagnosis.

Master J feels that autism is an evolutionary thing.  So far, of course, there is no scientific evidence to prove this, but who am I to tell him he is wrong.

I once asked him if I had an injection that would remove the autism, would he take it.  It’s a question that gets bandied about a lot.

His answer was resolute: “Never“.

And I would never want to give you that injection,” I tell him, “because I love you for all that you are.

This morning, Facebook showed me an article that at best can be described as irresponsible, at worst harrowing.  It had an image that was a painted hideous representation of a child screaming, an horrific image, a terrifying image, specifically aimed to terrify parents, with the heading The Child From Hell – Raising a Child with Autism or Aspergers.  Clickbait, for sure.

To be fair, the article was on a Facebook page that I would never like – it is a Facebook page that peddles pseudo science and slurs actual science.  It gains its traction through conspiracy theories – the notion that big business and big pharma have the world in its grips, and have been systematically turning us into drones for centuries.  It feeds on peoples’ fears.

This article was written by a woman, an educated woman who allegedly teaches children with special needs, whose son was diagnosed with autism.  She attributes his diagnosis to the battery of vaccines he received as a child.  The article then honed in on all that was wrong with her son.  It was an article that used her son’s autism to prove her own unsubstantiated opinion that vaccines caused autism.

The article was incredibly uncomfortable to read.  She compares him to her other “wonderful children”, painting him out to be an anomaly, a dysfunction in the human condition.  Her contempt for vaccines and the punishment she believes that they have unleashed on her drips out of her article.

I finished reading the article, and I was left horrified.  Not at the notion that vaccines caused my son’s autism, because that was proven incorrect almost as quickly as it was touted as a cause, but that this child has had to endure this level of neglect for so long.  I cannot imagine what he must have thought and felt constantly being referred to and looked upon as all that is wrong with the vaccination industry.  It was so, well, dehumanising.

There was no talk of what she did to try to understand her son, or help her son, or advocate for her son.  Instead the article (which was less of an article, but more of a personal essay dotted throughout with unsubstantiated opinions) used headings such as Stabbings, violence and a butchers knife!  I wonder if her son gave permission for her to use his behaviour, which is only a snapshot of a moment in time, plastered over a website that has a Facebook following of over 2 million people.

How must it feel to be used as the poster boy for an entire faction of children with autism, not for good, but held up as all that is wrong, and why.

She speaks of how her son had difficulty with the law, something she attributes entirely to his autism, for which she blames vaccination.  Her son is almost eradicated as a person in her rantings.  Her essay, rather, skips her son the person, and leaps straight from vaccination to criminality.  She claims no parental responsibility at all for any of his behavioural difficulties, rather choosing to infer that the diagnosis of autism caused by vaccination absolves us from responsibility as parents.  She chooses to focus on vaccination as the evil, citing the profit to be made by big Pharma from autism, yet failing to mention the multi billion dollar industry that is the Alternative Therapies.

Sadly, she is not alone in this.  Sadly, many many parents feel the same way, egged on by the media and society as a whole.

Recently, I was listening to a radio program.  It featured an adult with Aspergers and a parent with a newly diagnosed autistic child.  His child was non verbal.  It soon became clear that the intent of this parent was not in understanding the child, finding help for the child, or advocating for the child in terms of inclusivity in society.  No, his intent was merely to cure.  The adult with Aspergers found this offensive and became quite defensive.  The parent, fearing the future for his child, fought hard for his point of view.  His child needs to be able to conform, blend in, be normal, he said.

And herein lies the problem.  We are asking the wrong question.

A great deal of our time is spent looking for answers to the ills of our lives.  Why did we get cancer, why did that person die in a car accident, why didn’t I get that job, why did our children get autism.  A lot of our energy and attention is spent trying to eradicate the cause and thus eradicate the autism.  But why?  Why are we intent on doing that?

When I was studying Community Development, we had a speaker who was born deaf.  Through an interpreter, this speaker spoke of how some people in the deaf community really frown upon those who want to take steps to hear.  There are some who view it as a way of eradicating an entire society of people who have a right to be included, and accepted.  It is only the parents and society who believe they are defective.  Their belief is that the only thing they cannot do is hear, but their other senses are super charged and their life experience need not be, and indeed are not, any less than those of us who can hear.  They believe that it is society at fault here.  Rather than look at ALL children and seek ways to include them, no matter what they may have been born with, they seek to find a cause to the difference and eradicate it.  Some in the deaf community rally against this.

I feel the same way about autism, as does Master J.

I don’t have a disability!” he will yell at the radio advert that urges parents of children with autism and cerebral palsy to get in touch to “get help with the disability.”

It isn’t the child who has the disability, it is society.  We are unable to accept these children, who grow into adults.  We want to cure them, eradicate them, make them “normal”.

We fear them.  We fear the responsibility we may incur for them.  We fear that we can’t control them.  We fear the cost of them.  We fear because we don’t understand them.

Instead, we should be fighting for their inclusion.  We should be fighting for them to be accepted full stop.

Rather than constantly searching for what is causing these afflictions, surely we should be focussing on the children as individuals and fighting for their rights as human beings, to be included in a society that is hell bent on eradicating anything that isn’t “normal”, a construct increasingly whitewashed and intent on removing any kind of individuality.  Surely we should be fighting for a change in society – to create a new one, one that views these children simply as human beings, nothing more nothing less.

Rather than holding up our children as posters to the world, surely we should be treating them with kindness, dignity and love?

Simply because we do not understand the cause of their difference, does that give us the right to treat them this way?

Why are we not demanding from society to do better, to treat our children better? Why are we not educating our neurotypical children that everyone of us is an individual and some of us are born more different, but that does not mean they are less than us, and that it is important we include them in everything we do.

Why did that mother not write that article?

Her post was self serving.  It was littered with misnomers.  It was oozing conformity.

She is just a mirror for all that is wrong with our society.  We treat people who are different as a problem that needs a solution.

Yet, the solution lies with society.  We need to ask a different question: How can we get society to accept and include these children, not change them, cure them or eradicate them?  Then, maybe, we can envision a different, more inclusive world.

Until next time,

SHW Signature AmyG Font

 

 

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10 thoughts on “Autism – we need to ask a different question

  1. I love this piece Sarah. I struggle with the same thing. When my 3 year old (then 2) was assessed as being on the spectrum earlier this year I joined a bunch of groups and forums, only to swiftly unlike many of them when I realised it was full of women like the one that you describe.
    There were articles last week about the character on Sesame St, from factions with the autism world who argued passionately against the “normalisation” of autism. What do these parents think that it means to their children, for them to hate so vehemently such an intrinsic part of them?
    It’s a long road ahead to the world that we want and need for our children, but I’m glad there are parents like you on it.

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    1. Hi Dani, and thank you so much for your comment. Like you, I avoid those forums, because there seems to be such a swell of parents trying desperately to “cure” their children. I simply don’t understand it. Why not embrace them. Children on the spectrum repeatedly show a very profound way of thinking, they do not bow to peer pressure, they do not conform, they are largely independent thinkers who when allowed to blossom bring an amazing unfettered way of thinking to the human condition. As you can see, I am a passionate proponent of acceptance over cure. What a hideous notion – to cure our children. From the very outset it makes them sound defective and I am sure they feel that way too. Wouldn’t it be lovely if those self same parents held our society to account to include these children, differences and all? Have a lovely day xx

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  2. *Applause* I don’t have a child with autism but I do have vaccinated children- go figure, right? It infuriates me that some still peddle that myth on blogs and social media and anywhere else they can’t find an audience happy to dismiss non NT kids and adults as victims of a conspiracy. The whole attitude is sickening. Great piece Sarah- I will share for you on my HandbagMafia fb page 🙂

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    1. Hi there Amy. Unfortunately, it seems the myth is gaining more and more traction, rather than less. As we seem to becoming sicker as a society, we look more and more for answers in unsubstantiated regions and, as with anything, the internet enables that traction. Thank you for sharing Amy, I really appreciate it. xx

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  3. When my son was first diagnosed ten years ago, I reached out on forums and found nothing but hatred and depressed parents crying the “woe is me” scenario when they were failing to look at their own children as the unique individuals they are. On one forum though there was an adult male with Autism, in his twenties who hated himself so much that he would go to these forums and put all of the parents down for not getting an abortion so that more autistic kids weren’t born. My heart went out to him because all I could think of was, “what did your parents do to you to make you hate yourself so much?” That was the moment I decided that there was no way my son was going to grow up thinking I hated him because of his Autism. After he was diagnosed I didn’t know what to do because I knew nothing about Autism and wasn’t sure if I could care for my son the way he deserved to be cared for but after that experience I knew no one else was more equipped than me to raise my son with love and understanding. It infuriates me to see parents treat their own children like they are a stain on this world. If anything, they are a gift. You never know, your son could be right. They could very well be the next stage in evolution but that’s not something anyone will be able to figure out anytime soon. I am glad your son is loved and loves himself. This world is cruel and if a person loves him/herself, nothing will be able to bring them down! Thanks so much for sharing!

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    1. Thank you so much Michelle. Your experience was very similar to my own. I felt quite lost and adrift when Master J received his diagnosis. Parenting children on the spectrum is hard and challenging, but we need to find their light and help them to let it shine. I truly believe that. xx

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  4. I spent many years working with teens who were on the spectrum. They are truly super heroes. They talk me about honesty and courage. “Normal” is dull. We grow as people and as a society by embracing the strengths of those who live out of the box.

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