[Warning- in this post, written in support of the This is Autism flash blog, I've quoted some of the dehumanising language used by Suzanne Wright.]
I don't get to say what autism is. I'm not autistic though my thirteen year old son is. In learning how to parent him, I've met other autistic people, read their words and I've listened. I'm qualified to say what my son is like, how his awesomeness and autism intersect. I'm also authorised to say that the wretched "Call for action" edict by Suzanne Wright, co-founder of enormously wealthy and powerful, USA organisation Autism Speaks, is revolting, damaging and does not represent my son or my family. Nor does it tally with anything I have learned about autism in the past 11 years.
Autism Speaks Co-founder Suzanne Wright after some fantastical Photoshopping
"This is autism" Suzanne claims three times in a piece filled with falsehoods, bigotry, hate and a total negation of the existence of autistic adults. She does not represent my family when she says that we are "not living" but are merely "existing". Such hubris! She honestly thinks she can speak for all of us. She invents statistics; "2.3 million [US] dollars to care for one person with autism for their lifetime" and "Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help."
I'm offended and contemptuous. My son's existence isn't adding to a crisis, he's no national emergency. He's a disabled young person with his own challenges and talents and it's my job to raise him. Autism is part of the naturally occurring diversity of human experience. Unlike Autism Speaks, I don't want a world in which we "make autism a word that we only see in the history books."
Sure I am often worn out and I worry about and struggle to understand my children- all three of them, autistic and non-autistic, just as most parents do. Autism brings more challenges to the mix and I have had to battle with service providers and education departments to have my son's needs met. I've weathered the stares and comments of judgemental strangers. What hurts and exasperates me most of all though, is dealing with the perpetual dehumanising of people like my autistic son. He's a great kid- if you are ever lucky enough to meet him you'd see that. He doesn't deserve to have his very humanity constantly called into question.
Living, not just existing
I will do all in my power to prevent Autism Speaks from gaining a foothold in Ireland and the UK. I request that anyone who has ever contributed to that organisation now withdraw their support and that academic departments think very hard about whether to accept funding from them. An organisation that spreads this rhetoric of fear and hate ought to be shunned.
This is my millennium baby. He didn't develop along quite the same path as his older sister and most of his peers and was diagnosed with autism when he was two years old.
Ryan aged 2
As a toddler, he didn't speak but he communicated in other ways. Over time and with lots of help and teaching optimised to his way of learning he learnt to communicate more effectively. By the time he was 4, he was speaking in 2 to 3-word sentences.
Over the years, just about every single time we have been out and about together, people have taken a second look at him. Often it's because of what he's wearing. Ryan loves videos and stories. Most of his language comes from chopping up film scripts and slotting the pieces into place appropriately. He makes films of his own, He likes to dress up as his favourite characters. He's eccentric and catches eyes as he strides along with a red blanket wrapped around his shoulders.
Ryan aged 6, Robin Hood/Cowboy mash-up
Ryan aged 12 as Curtis the evil raccoon-sheep from Minecraft
People look because Ryan can be loud. He comes out with unexpected expressions. Sometimes he's angry and lashes out though it's very rarely physical and he holds back from hurting as best he can. Often he talks to himself and he moves in non-typical ways. He often livens up walking with a perfectly executed pirouette.
Most people look instinctively then go on about their day when they see that it's just a boy out living his life as he's entitled to. Rarely do people progress from simple curiosity to outright rudeness and the stares of strangers don't affect me. Over the years I've developed a force field that surrounds me and my boy and the people who try to catch my eye so they can register their disapproval are rarely successful. Some still try but I notice it much less than when he was younger. His disability is more apparent as he grows. He's not like typically developing teenagers.
Most people are lovely- they smile at Ryan, they show us kindness when we need it. Ryan abounds with kindness and concern for others. He deserves to have his place in the world, to be accepted and to have the few accommodations he requires to participate. He's my child and I wouldn't want him to be anything other than the creative, funny, loving and perfectly autistic boy he is.
There's a new quackery promoter in town and he sent me the following email a few days ago. My thoughts are in red:
"Dear Sharon,
I have just been reading your blog I don't think so and wanted to introduce you to a new approach to working with Autism. Rather than send you a long email. Don't leave me hanging, rather than send a long email you'll...?
I just wanted to say that I am new to the Autism community here in the UK allow me to represent the autism community in the UK and Ireland and say hello and welcome as I am working to try and connect with parents of Autistic children but not autistic adults? with a view to subsidising a trail oh here it comes of a water product that is having very positive outcomes with Autistic children. Wowee positive outcomes! That sounds like a good if rather vague achievement. And you're subsidising a trial? Does that mean people are actually being asked to pay to take part in a research project? Ethics fail.
I have attached a couple of pdf's for you to look at and look forward to hearing back from you when you have a moment.
Best Regards,
Jeremy Jones
Double Helix Water (UK) Limited
Company Number 8482978
Distributors of Double Helix Water for United Kingdom and Ireland"
(Double Helix Water-it's like DNA and water combined and doesn't that sound just awesome!)
Jeremy's email included a link to a science-y video all about the mysteries of water. Also attached was a slick marketing PDF which is what really piqued my ire. I can't find a link (will forward PDF to anyone interested)I uploaded it to Google Drive and here's the opening page:
Autism- ripping jeans and upsetting little kids since 1943
They're selling hope, the most marketable of all products. But they need first of all to frighten potential customers who, if they knew that autism is part of the naturally occurring diversity of human experience, wouldn't be hoodwinked by their pitch.
This document which I'm calling A New Hope goes on to proclaim that we're in the midst of a Global Epidemic, autism is a "medical and social issue that we can no longer afford to ignore. It has to be dealt with, and real solutions need to be
found."
This is followed up with an unreferenced "study" concluding that biomedical treatments are 81% safer and 60% more effective at "producing improvement" than drug treatments for autism, all based on parent consultations and the Autism Research Institute.
So much fail. To start:
who was "improved" and how?
drugs don't count as "biomedical treatments"?!
how was relative safety defined and measured
parental opinion is hardly objective.
the Autism Research Institute is a key player in the axis of autism-vaccine nonsense, it is a disreputable organisation promoting pseudo-scientific and potentially dangerous treatments for autism.
what exactly are the drug treatments referred to?
On to page 11 and more misinformation:
"Genetics Does Not Explain Autism
A Stanford University study of twins published last year found that genetics accounts for just 38 percent of the risk."
That's not what the study found- its authors say that the role of environmental factors has been underestimated. However an alternative analysis of their data concludes that it supports the findings of all previous twin studies and provides further evidence of the heritability of autism.
There is certainly no evidence for A New Hope's next claim, "The Majority Of Autism Is Caused By Environmental Factors."
After the usual autism-snake-oil pitch about gastrointestinal disorders and chemicals and toxins (oh my!) we're shown the solution- our saviour is so highly qualified the page is crammed with accolades:
Our hero
And this genius discovered something remarkable- stable water clusters. I think he means ice crystals. But anyway these, A New Hope claims, "have a remarkable effect on the Human Immune system."
What is it with quacks and non-standard word capitalisation?
On page 21 we learn that they use "Completely Safe thermal imaging" not harmful x-rays to examine the patient. But why would anyone even suggest using x-rays to discover anything about autism?!
Pink bad green good
So the magic water is administered and as the "startling" thermal image above of an autistic 7 year old shows, after only 20 minutes the child's temperature has dropped. Perhaps the heating was broken.
A New Hope ends with a pair of testimonials about how the magic water made a little boy and autistic teens smarter and healthier.
OK I'm convinced- where can I sign up to get the boy known as Duncan a supply of water clusters to make him more green and less autistic? Thankfully there's a FAQ on the website telling all. There's also the small detail of cost, they ask "participants to contribute $800 for this research project for three months". And they have the cheek to ask people to fork out that kind of money for water with a disclaimer that comprehensively states that participants can and should expect nothing for their money: "Nothing in this material is presented here as an effort to offer or render medical advice or opinions or otherwise engage in any type of medical practice."
This is a ridiculous con but some parents of autistic children will fall for it. It disgusts me that the people behind these companies are so lacking in standards, morals and ethics that they prey on people at a vulnerable point in their lives.
I posted on Facebook about the photos of Nigella Lawson having her neck squeezed by Charles Saatchi and called him a typical abusive creep for making a statement minimising his behaviour by describing it as merely a "playful tiff". One of my friends said "I just cannot understand why such a smart, beautiful and independently successful woman would have stayed with him throughout torment like this!"
I thought about this and decided to respond here instead of on Facebook. I don't know why she stayed, only she can answer. But I would be very surprised if at least some of the reasons I shall list don't apply. So here is why she and people like her may stay:
It started out so slowly and insidiously that she didn't realise it was abuse until she was married or much later.
She thinks that she doesn't deserve better.
She's afraid, confused, guilty and burdened by obligation.
He's hurting and needs her love. She can heal him, it's her duty to just keep giving.
She thinks she's to blame for most of what goes wrong- if she could stop being so emotional and weak things might improve.
She sees him behave properly in every other situation except with her- it's her fault.
She minimises incidents, explosions, hurts and humiliations as soon as things get on a more even keel.
She feels embarrassed, thinks she overreacts, knows she's not perfect, thinks of herself as too argumentative and combatative.
She finds it hard to keep track of what happens.
She still feels love for her partner- it may turn out that the emotion could more accurately described as pity.
She's frightened of change, of things getting even worse if she tries to end the relationship.
She can't imagine how things would be if the marriage ended.
She's afraid of being alone.
She's concerned about the impact on her children.
She's afraid of what a man with wealth and power could do to her if she tries to leave him, how he could affect her reputation or career. Will he start telling people that she's mentally ill or unstable?
Sometimes it's fun being with him, she remembers good times they shared, sometimes he acts as though he might actually love her.
He might apologise, promise that he loves her, he'll change and do whatever it takes to make things ok, but that he can't do it without her.
Stockholm syndrome is real- the person causing the hurt may then take care of her, increasing the confusion, making her dependent on him and feeling like she couldn't possibly cope without him.
His promises keep lighting the hope that things will improve. Hope takes a long time to die.
Ending a marriage goes against all her values and principles, she thinks that she must fight harder to make it work, give it one more go, try to accept things or be more understanding.
Ending a marriage means admitting defeat- she must accept that she failed to either pick the right partner or to make a marriage work. She might feel shame especially if she's the only person this has happened to in her family. She might feel shame that people will blame other difficulties in her life for making marriage impossible.
All kinds of women and men can be in abusive relationships. Thankfully sometimes she recognises what's been happening, fights the denial, crushes false hope and with a heck of a lot of help, she gets out of it and makes a far better life without the abusive jerk. But it never stops stinging slightly when people ask "why did she stay?"
