Everybody knows autistic people are cold and emotionless. That we’re locked away inside our minds, cut off from human contact and feeling. Read more
In a week and a half it will be Autism Acceptance Month. Yes, I say Acceptance, not Awareness. That’s important. Anybody can be aware of autism but accepting it? That takes effort. Effort that a lot of people show no willingness to make.
Another year passed. More autistic kids dead, abused, at risk. Where’s the awareness of this: this is the real tragedy of autism. We’re ignored. Ignored when we try to speak out against the people who make pretty for the cameras while they tell the world how broken we are.
Ignored when we call for justice after another one of us is murdered and the media focuses yet again on excusing the parents and care-givers because autistic lives are a burden and death is a release, don’t you know?
Ignored when we campaign against unproven and often harmful chemicals and “treatments” such as GcMAF and MMS pushed as cures by charlatans on unsuspecting and easily-misled parents of autistic children who are told time and again that autism is a disease and their children are damaged.
Ignored when those of us who have been through it tell you ABA–in any form–is abusive, coercive enforced compliance to arbitrary “neurotypical” standards of behaviour, where the only goal is to force us to appear indistinguishable at any cost to our long-term mental health.
Ignored when we tell people that we are not “vaccine damaged”: autism is genetic and we are autistic from birth. And still delusional conspiracy theorists like Polly Tommey, Andrew Wakefield, Robert Kennedy Jr.–even Robert De Niro–refuse to accept the overwhelming scientific evidence and insist that we throw more millions of dollars away instead of using that to help autistic kids today.
Ignored when we tell you that autism charities and organisations like Autism Speaks don’t represent us, don’t make our lives better, don’t listen when we tell them what we need. They don’t speak for us; they speak for themselves. They dismiss us, discredit us, portray us as not competent to participate in decisions affecting us directly.
This is why awareness will not do. It doesn’t even come close. We aren’t given a voice, we aren’t heard. All these people, the high-profile “allies” and “autism parents”, people like Anna Kennedy and Bob Wright have something in common: they are not autistic. They are outsiders who can never fully understand how we experience the world.
So why are they the ones who get to tell our stories, over and over? Where are our own autistic voices? With a mere handful of exceptions we are, like me, writing blogs for a few hundred readers, most of whom are also autistic. We’re preaching to the choir.
So if you really want to make a difference to autistic people, go and look for our stories. Read about our lives and experiences. Tell all your friends. And perhaps then we will have a chance to be understood and accepted. And we might one day get the same chances and rights other people take for granted.
Hey Mrs Kennedy
There with your OBE
Your shiny charity?
You ain’t that much to me.
If you read what I wrote
You wanna make a note
Don’t sit up there and gloat
You gonna miss the boat.
See what I’m tellin’ you
Ain’t just my point of view
We’re more than one or two
Autistic through and through.
So listen when we say
Your spiel has had its day
We’re dissin’ ABA
Abuse is not okay.
We spotted Wakefield ties
And anti-vaccine lies
You hung out with those guys
Now that ain’t very wise.
We followed all the tracks
Led us to frauds and quacks
We’re threatened with attacks
But we got stacks of facts.
We offered you advice
We tried to play it nice
We thought that would suffice
Won’t make that error twice.
You think we’ve had enough?
You think we’re not so tough?
We live and breathe this stuff
Don’t want to call our bluff.
When you don’t give respect
When you try to deflect
And posture for effect
Twist truth and misdirect.
You pick on one of us
Insult but won’t discuss
You are superfluous
Not even worth the fuss.
You claim that you’re “aware”
But show that you don’t care
We will be treated fair
In schools and everywhere.
To mimic NT poise
Under duress destroys
Autistic girls and boys.
We’re not your little toys.
Don’t want our names in lights
Or fancy ballgown nights
One goal in all our fights
We want autistic rights.
Yesterday evening (UK time) I posted a status on Facebook where I set out how I was feeling due to depression and anxiety.
Just venting here.
I’m exhausted. My anxiety keeps flaring up with no obvious triggers, the depression is with me more and more. I’m getting seriously eye-rollingly sick of feeling like this so much of the time.
I’ve got some seriously strong urges:
– To run away to old, familiar places.
– To lock myself in somewhere safe, curl up in the fetal position and stay there.
– To just sit here and cry.
I’m feeling kind of trapped. I feel like I’m failing. I’ve not got the strength left to keep on fulfilling my responsibilities. But there’s no escape, no respite. I don’t want to play any more but the merry-go-round won’t stop and I can’t get off.
It wasn’t generally visible: I restricted it to people I feel safe sharing more sensitive, personal things with. And, typically, I worried that it might have been attention-seeking.
I had not slept well all week; I somehow unproductively scraped through a day’s work with the assistance of much music, and was feeling enervated and pretty hopeless. Again. I think that it wasn’t so much attention I wanted as just a little acknowledgement. A bit of solidarity to help me feel less isolated.
I never used to reach out like this. I would keep it all in and try to handle it on my own. Well, I was prepared to do that this time too: I was seriously weighing up the pros and cons of self-harm. The knife is still where I put it, within easy reach. I didn’t need it in the end.
Reaching out worked. I never used to have any kind of network, any group of friends I could turn to for support when I was struggling. In recent years this has been getting steadily better. I still feel a reluctance to impose the burden of my feelings on anybody. But they are a compassionate bunch and what I received was caring and supportive.
They helped me reach the point where I could make an important decision: to visit my brother. It was something my daughter and I had talked about. We both feel a connection to that part of the country, a link to happy times in the past. In a way this really is fulfilling one of the urges I felt: running away to an old, familiar place.
I phoned my brother, checked when he would be around, and then organised what dates my daughter and I could manage. Suddenly I had an escape, the promise of some respite, and I started feeling positive. I messaged one of my best friends to share the news: we ended up chatting for hours, well into the night!
I slept well, cuddling my plush toy penguin as usual, and woke up an hour before my alarm feeling better than I had for ages. Before lunch the time off work was booked, as was the hotel. I can’t deny I’m feeling incredibly excited about the trip.
More than anything I am amazed by how much different I feel just within 24 hours. To go from despair bleak enough to make cutting myself seem an attractive option, to this hugely positive feeling of anticipation and excitement. I wish I could bottle the feeling and save it for the next time.
I know I will feel down again, the depression is always there in the background. It’s not a case of, “Hello darkness, my old friend.” Circumstances affect my mood: it swings between highs and lows. But the highs don’t shine a beacon of hope that is visible from the depths, and the lows don’t drag me down when I’m soaring. All I can do is live in the moment and respond to it in whatever way I am able.
But one thing I have definitely resolved to do is to make time to keep in touch with my friends and, as much as I am able, to go and meet them, spend time with them. They are well worth the effort.
I wouldn’t be me if I could leave yesterday’s transphobic Sunday Times piece by Jenni Murry alone. For those who don’t know, Jenni presents the long-running Woman’s Hour magazine programme on BBC Radio 4. So you’d kind of expect her to support women.
Except that it appears she doesn’t. She gets her credentials in early: she’s not transphobic, she assures her readers. That’s good. If she hadn’t told me I’d have had to work out her opinion of women like me based solely on how she writes about us.
I’ll save you the torment of quoting bits and pieces of her article. Instead I’ll summarise it: trans women are not “real” women because Jenni doesn’t want them to be. For whatever reasons–and she doesn’t delve into the roots of her prejudices–she doesn’t want her idea of what a woman is to include people like me.
Her objections as stated in the article are thin and unconvincing. We haven’t had the same experiences as she did growing up? A cherry-picked selection of trans women have expressed superficial stereotypical thoughts? Come on Jenni, you can do better than this!
Why not be honest with your readers? Why not admit that you’ve got a nice, cosy, simplistic concept of what a woman is, and it’s basically people who are like you. Preferably middle class and white, no doubt, although it would be career suicide to voice those thoughts these days.
But trans women? Well, they’re fair game. Or so you think. It’s not that long since gay men were openly criticised as not being “real” men. A lot of people used to agree with that sentiment. But opinions change. Try publishing that one today and you’ll not get past the paper’s legal department.
More and more people, especially younger people, have no hesitation including trans women in their concept of women. The landscape is shifting under the feet of people like Jenni Murray, and her views that were once comfortably mainstream are looking increasingly extreme.
It’s not only trans women like me who cringe these days when we encounter these old-fashioned, outdated prejudices. People like Jenni are the minority now: it’s only their public profile that gets them a few column inches to keep reflecting the echo of their intolerance.
What makes a woman real isn’t any physical trait. It’s not how she looks or acts. It’s that the majority of society accepts her identity as a woman. Most women will never face this questioning, will not have people publicly reject their claim to be women. Some who don’t look conventionally female will know exactly what I am describing.
This isn’t about appearance though. It isn’t even about trans versus cis. It’s about who gets to decide what a woman is in our society. The large majority of people can reliably and consistently agree that most women are definitely women. This is about the rest, the edge cases. The ones who don’t exactly fit the usual, common definitions.
So how can we decide? An increasing number of people are realising that the simplest, fairest, most obvious way is to just ask the people themselves. A woman is someone who identifies as a woman. After all, they ought to know better than anybody else!
Some people, like Jenni Murray, feel threatened by this. They cling to the illusions of certainty that sprang forth from second wave feminism with its promise of a unified concept of womanhood (as long as you fit the ideals it was based on). They could never see that their perfect vision was as deeply rooted in stereotypes as the ones they now criticise some trans women for holding to.
There are no perfect, fact-based criteria to define who is and who is not a woman. There are some traits that apply to most women. For the rest, take their word for it. Most of us encounter people who leave us scratching our heads as we try to decide what gender they are. We need to stop worrying about it and just trust that they themselves know the answer much better than we do. That’s certainly real enough for me.
For seven years from shortly before my fifth birthday I went to a smallish private school called Clevelands Preparatory School. It was an old-fashioned establishment in an old Victorian house, and very much based on old-fashioned ideals.
That included the uniform. The boys wore short trousers year-round, and even the underwear was prescribed for the girls. Separate shoes for outdoors and indoors. And the school dinners: you ate what was put in front of you or you went without.
Discipline was strict, enforced through corporal punishment. In a small concession to liberal ideas it was the slipper rather than the cane. I don’t know what effect it had on other pupils but I found the thought of it terrifying.
So apart from my academic achievements (which were exceptionally good) I also learned to be compliant. To obey without question. To defer to authority. All because of the threat of violence hanging over my head.
After a little while obedience becomes habit. You don’t even think about questioning. You just do as you are told like a good little cog in the machine.
It was during this time that I developed strong inhibitions against many of what I now recognise as my autistic behaviours. Rocking, flapping my hands, echolalia and verbal stimming, toe walking. Because those behaviours weren’t acceptable, they weren’t how a good child ought to behave. “Sit still!” “Be quiet!” “Walk properly!”
As I have worked to overcome my inhibitions in recent years it has become increasingly apparent just how deeply that fear of punishment affected me. How much of it I still carry with me to this day. That fear is forever looking over my shoulder, judging everything I do to ensure I don’t break the rules.
I am almost incapable of breaking a rule. Even thinking of doing it fills me with a sense of danger, of dread. And I can trace it all back to my experiences at school. Back to that threat of violence. I fear violence: it terrifies me. Of all the triggers for my anxiety that is the most powerful, the one that can make me freeze, unable to even think. Literally scared witless.
These days I’m beginning to think of it as trauma, and I see parallels with the aversion-based conditioning of ABA. I was never struck, but I saw others punished. I saw one little boy who could not have been even 5 years old picked up bodily by the headmaster and shaken for refusing to eat his dinner, all the while being shouted at and verbally abused.
My heart is pounding in my chest just remembering the incident all these years later. And there were many others. I say I have bad things locked away in my mind: these are some of them. I have to move away from these memories now, lock them away again, wait for the screaming in my mind to diminish.
To me there is no doubt: I was conditioned to be compliant, obedient. It scares me to think that if someone in a position of authority had tried to abuse me physically or sexually I would have felt unable to say “No”. I still find it hard to assert myself when I disagree with my boss, say, or anyone else in a position of power.
There was another form of conditioning I underwent. One that was perhaps more insidious than the explicit threat of violence. I learned to seek approval, praise. It was a competitive environment and since I had no talents of the physical kind I could only rely on my mental abilities. Once it became apparent that I was gifted, excellence became expected. Anything less was received with disappointment and I felt the failure keenly.
Praise and reward is how I measure my worth: I am only as good as people tell me I am. It became my chief motivation and it still is to a large degree. And it’s all about satisfying other people’s expectations rather than setting my own goals. I’m not even sure I know how to work out what I want for myself.
In some ways I feel I am broken. Not because of my autism: certainly not that. But because I carry all this baggage of my past with me. It shapes every interaction I have with other people. It affects how I think and feel about events. I despair of ever being free from it: I don’t even know what such freedom might mean. But the weight of my past is suffocating me.
You can hardly walk though town these days without tripping over some autism charity or another. In terms of awareness, the message seems to be getting out. On radio, TV and in the papers you hear about autism most days.
So why, you might be forgiven for asking, are these autistic advocates and activists not satisfied? Why are they still complaining?
It’s very simple. Awareness means nothing. What autistic people need is acceptance. Equal rights, equal opportunities. An end to exploitation and second-class status.
What does nearly every autism charity have in common? It was set up and is run by parents of autistic children. However well-meaning they might be they are not autistic. Their aims are not autistic people’s aims. These organisations are run for the parents’ benefit, not for the benefit of the autistic children and adults.
So you get Autism Speaks with their infamous blue puzzle piece: autistic children are missing something. What do we have to do to complete them, put them together, fix them?
So you get all kinds of discussions, presentations, conferences where autism is portrayed as something wrong with the child that must be mended. Heaven forbid the child might not behave like most other children! Quick! Train them how to pass as “normal”. After all, that’s what matters: that they not be an embarrassment or an inconvenience to their parents.
This constant message that autism is a disease, that the child is damaged or broken, leads parents to believe that it is something that can be fixed. That there could be a cure. That they can still hope for a perfect, autism-free child. Because they are led to see autism as something so negative, so awful, that far too many of them will subject their children to terrible suffering with unproven, unregulated and sometimes potentially deadly fake cures.
Do the charities speak out against these quacks? Rarely. The NAS (National Autistic Society) issued a statement after much pressure from activists but stopped short of actually campaigning. Others have done less or nothing.
The high-profile UK charity Anna Kennedy Online has an event, AKO Autism Expo, at Brunel University on the 11th of this month. A week tomorrow. After Anna Kennedy OBE herself was personally contacted by activist Fiona O’Leary with concerns over the legitimacy of one of the companies involved with this Expo, Fiona had hoped for decisive action to protect autistic children and their parents against misleading product claims.
No such luck. The company was dropped as a sponsor but they still have a speaker and are still exhibiting at the Expo. Anna Kennedy Online issued a legal disclaimer whereby they explicitly do not endorse any products or any exhibitors at the Expo. The trouble is that having them at your Expo still looks like an endorsement. I believe the moral and ethical decision would have been to remove any exhibitors and speakers where there are serious questions over the legitimacy of their claims.
The company in question, Brain Abilitiez, uses the BrainRx “brain training”, also known as LearningRx, that was developed by Dr. Ken Gibson, a doctor of optometry. Claims that this training was “clinically proven to permanently improve serious health conditions like ADHD, autism” were investigated by the Consumer Protection arm of the US FTC and were found to be unsupported by evidence in a $200,000 settlement last summer.
I don’t know about you but for me that raises major doubts about the claims made for the intensive, expensive “training” offered by this company. What we see here is that the charity has washed its hands of any suggestion that they have a responsibility to ensure the exhibitors at their Expo are all they claim to be.
So I have to ask, whose charities are they? Who are they run for? Are they being run for the benefit of autistic children and adults? Are they being run for the benefit of parents? Or do they exist primarily as a vanity trip for their founders?
If they truly want to improve the lives of autistic children and adults, then they need to listen to those very people. Not their parents. Not even “professionals” with their neat little labels and theories. But actually autistic people. The real experts. Only then will we see our rights respected. Only then will we see action directly for the benefit of autistic children and adults.
Too many parents of autistic children look at actually-autistic advocates and dismiss us. “Not like my child.” Maybe not on the surface, not today, but we were all children once. And you don’t know what we experienced growing up.
That’s the point, you see. If you’re not autistic you can’t put yourself in the place of someone who is. Empathy doesn’t work with people whose brains behave in different ways. Who experience the world so differently from you.
We who are autistic know this. How could we not? It’s been our daily experience throughout our whole lives. We understand your child because so many autistic experiences are relatable to us all.
What you see in us, the ones who step up and try to educate you about autism, is the culmination of years of practice and learning. Years of experience of simply existing as autistic in a neurotypical world. We weren’t born fully-formed as advocates. We have taken on that role because we feel a kinship with other autistic people. We know how it feels to grow up autistic. We remember the things that would have made our lives better and we try to provide them for those who are growing up autistic today.
We’re not in it for ourselves. And we’re not here for you so much as for your child. Our aim is not necessarily to make your life easier (although that can be a welcome side-effect). No, we share our hard-won experience and insight so that your child can have a better life through being better understood and accepted.
So when you as a parent see advice from actually-autistic people, instead of thinking that your child could never hope to achieve what you see in us and dismissing what we say, start believing that the potential exists inside them.
Because when you stop thinking of your child as a tragedy, as lost opportunities, as damaged, and start thinking of them as a whole person, complete, you will lift them to greater things than you imagined when you first heard that diagnosis.
Autism is not a curse, it is not a blessing. It simply is. We’re different but we’re all human beings with similar feelings, hopes, fears, dreams and desires. As autistic people we don’t get as many opportunities in life. You can help change that, you can help us gain acceptance. You can help us achieve our full potential.
We advocate. We do what we can so that the experiences and challenges of being autistic are explained and can be more widely recognised and understood. The rest is up to you. If you want your child to be understood and accepted, that starts with you. Please don’t let us down. Don’t let your child down.