Hear Us, Accept Us! #AutismAcceptance2017

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.

Autistic Rights, Not Autistic Wrongs

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.

Reach Out, I’ll Be There

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.

Do As You’re Told

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.

A Letter To Autism Parents

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.

Advocacy Is Not A Popularity Contest

If I mention free speech I bet some of you will run away screaming. So I’d better not mention it. You know. Free speech.

Some people mention free speech as if it’s some magical incantation that protects them from any consequences, whatever they say. This is the “Freeze Peach” described by the fantastic Paris Lees in her article for Vice where she challenges Germaine Greer’s transphobic hate speech. It’s the free speech that Milo Yiannopoulos cries about when he’s rightly no-platformed.

Because these people with their bigotry try to use this idealised free speech to claim they have a right to push their messages of intolerance. They don’t. They most certainly don’t. If they are given a platform they use it to incite hatred that leads to violence against their targets. They are bullies, trying to recruit and stir up other bullies. Trying to build a cycle of hatred and violence. They are evil.

Hate speech must always be denied a platform. It must be quashed. It’s imperative to come down hard and fast to stop it spreading. Giving a platform to hate speech says that it is acceptable. Allowing it is the same as accepting and condoning it. If you’re not against it, you’re complicit in the attacks.

I saw something ugly last night. Something disturbing. Something that unfortunately happens far too often. But last night it happened to my dear friend Emma Dalmayne. So that makes this personal.

There was an unambiguous incident of anti-autistic hate speech in a Autism Facebook group. Emma quite rightly tried to stop it: she was the one that got slapped down by the Admins. Yes, the group Admins ganged up on her and bullied her into leaving the group. They protected the perpetrator of the hate speech.

That’s so very wrong. That’s saying that hate speech is acceptable, but opposing it isn’t. What the hell kind of example is that to be setting? These people call themselves allies to the autistic community? Yeah, well don’t do me any favours! I’ll do without that kind of “support”, thank you very much.

I know what support is. I know what allies are. And I know who my friends are. There’s a lot of hate out there, a lot of people who would attack us simply for being autistic. Who would deny us our rights. Who are actively engaged in trying to harm us, even eradicate us. Who see us as a disease. “An epidemic”, “a plague” is how they refer to us.

My friends stand up against that. I stand with them.

 

Stand Up Against Anti-Vaccine Fear, Uncertainty and Doubt

I recorded a video message tonight; it can be seen on Facebook. This was my script:

Hi, Alex here. I’m an autistic woman from the UK and I want to talk to you about some people who are a very real threat to the health and well-being of autistic people, especially children, and also many in the wider population.

This threat, this very real and growing threat, is the anti-vaccine movement. With their leading figures like the discredited, struck-off former doctor Andrew Wakefield and his associate Polly Tommey, and radio talk show host Robert F. Kennedy Jr., they are pushing a message of fear, uncertainty and doubt at parents.

These parents are often drowning in a sea of conflicting information about how best to protect their children from all the risks of modern life. They’re not experts, how could they be? Scientific fields are so broad in today’s world that no person could possibly take it all in. So we rely on experts to advise us. But how do we know which experts to trust? Who is genuine?

Well, one way to spot the frauds is that what they tell you is all about fear. Everything they say is loaded with scary terms. Like “vaccine damage or injury”, “brain damage”, “mercury”, “toxins”, “crisis”, “adverse effect”, “autism epidemic”. They want you to think about these words and phrases every time you hear vaccines mentioned. They want you to be afraid, to doubt. They want you to distrust the real experts, the reputable doctors and scientists. The ones who haven’t been stripped of their licenses, who haven’t had their fabricated research retracted because it was found to be fraudulent.

So these frauds, these quacks, they weave their web of lies around this centre of fear. They tell you vaccines cause autism: they emphatically don’t. They tell you there is an autism epidemic: there isn’t. We’ve just made the description wider so it fits more people, and we’ve got a lot better at identifying it. Think about it: how many people my age had even heard of autism or Asperger’s Syndrome growing up? I know I never did. There was no way I could have: Asperger’s Syndrome wasn’t even a diagnosis in the DSM until 1994! I was in my 20’s.

As I said, I’m autistic. I have many autistic friends. Some very, very dear to me, who I love very much like Fiona O’Leary and Emma Dalmayne. Others are simply good friends. We are a community: autism forms a strong bond between us. We support each other. And we don’t see autism as something you can separate from the person. We are who we are because we are autistic: it’s an integral part of us. It’s not without its problems. The world, or at least the human part of it, is not very well set up for our needs. We’re a minority and like other minorities such as those who rely on a wheelchair for mobility, our access needs are often not met.

That doesn’t make us lesser people. But if you listen to the anti-vaccine crowd talk about autism you’d think we were pitiful, tragic, broken people. Because that’s the language they use about us. It’s dehumanising! How would you feel hearing yourself described like that? Because that’s how it makes us feel too. That’s how it makes autistic children feel. People who describe others as basically subhuman, they are doing what the Nazis did to Jews, to the disabled, to justify exterminating them. Words like these harm us, using them is an act of violence towards us. It’s abuse. So you can understand why we get angry when we hear it directed at us.

I’ll say it again because it bears repetition: there is categorically no link between autism and vaccines. There is not one scientific study that shows any link. That is a fact: you can get a list of the published research online. You can check it yourself. That’s the thing about facts: they have evidence to support them. I don’t have to instil fear in you to get you to come round to my point of view because it’s more than just my opinion: you can go and find the evidence that supports what I’m saying.

And so it is with vaccines. No other category of medicines is as rigorously tested or documented. How they work is very well understood: more so than many painkillers such as opioids. And speaking of painkillers, they kill more people every year than any other drug apart from tobacco or alcohol. Would you worry about that if your doctor prescribed them?

But no, for some reason these people want you to worry about vaccines. Vaccines that prevent uncounted deaths and chronic illnesses all around the world every year. Vaccines that do such a good job that many people have only seen cases of these diseases in the media or the history books. We have forgotten what these diseases are really like. How many people today are confined in an iron lung in hospital for the rest of their life because of polio? How many siblings did you lose to measles or rubella?

We’ve forgotten that these diseases are killers because thanks to vaccines we no longer see them all around us. But if we don’t maintain the high rates of vaccination they will come back. High rates are vital: there’s something called herd immunity. Basically, when enough people are vaccinated there is only a very small chance of a disease carrier meeting someone who’s not protected. Vaccinated people form a barrier preventing the disease from spreading. But when rates drop, the disease gets passed from person to unprotected person, and suddenly there’s a bunch of carriers and a massively increased chance of an unprotected person encountering the disease.

Because vaccines can’t protect everybody. We have to protect enough people, and then the babies who are too young, or those with compromised immune systems will be shielded by those who have been vaccinated. People who could be vaccinated but refuse are incredibly selfish: they might feel they have a right to put their own lives in danger but what right do they have to increase the risk to everybody else?

It’s like saying you have a right to fire a gun. Okay, but not in the middle of a shopping mall. Not if you’re around other people. And it’s the same if you’ve refused to be vaccinated. You have turned yourself into a public health hazard. If you then mix with other people whose level of protection you don’t know you are directly putting their lives in danger. That is dangerous and irresponsible.

And that’s the behaviour the anti-vaccine movement promotes. By spreading their lies they make people who don’t know any better fear vaccines. They talk about vaccine injury as if it’s commonplace: it’s not. Yes, it happens, but only rarely (as in once every ten thousand or hundred thousand vaccinations). Reactions to vaccines happen more frequently, but in most cases that just means it’s a bit sore where the needle went in. Yes, that’s an adverse reaction and as such gets listed on the insert. But it’s trivial and you get over it quickly. And even the more severe reactions hardly ever last long-term.

Which is exactly what you’d expect from a medicine that has been extensively tested and used to treat, typically, millions of people. Another thing you probably don’t realise about the adverse reactions on the medicine insert: they don’t have to be proved to have any connection to the medicine. If I got a flu jab and a week later went out drinking I could report that I suffered nausea after the vaccination and it would be counted even though in reality it had nothing to do with it. That’s the reality of how these reactions are reported: they are just things that happened within a certain time after being vaccinated.

The thing is, even if these fictional figures and statistics invented by the anti-vaccine movement were true, which they’re not, there would still be many, many times fewer injuries and especially deaths than would be caused by diseases if we didn’t vaccinate. So looking at it rationally, even if vaccines were dangerous they would still be a hell of a lot safer than catching the diseases. The anti-vaccine case doesn’t hold up at all. No wonder they have to resort to fear, uncertainty and doubt.

Don’t fall prey to fear. Don’t fall prey to the lies from these anti-vaccine frauds.

My name is Alex. Thank you for listening.

Hair-trigger Sensory Hell

I’m sat here writing this and my focus is everywhere, darting around the room like a frantic animal seeking escape. I’m twitching, every little sound makes me jump.

So many sounds. There’s no escape. All outside my door here. All threatening. I’m terrified. I hear a bang (something dropped?) and scream! I’m alternating between holding my head in my hands and sobbing, and the rapid breathing of a panic attack.

My headphones don’t help. They don’t cancel everything. And even if they did I still feel the vibrations.

Literally. Every. Sound. I’m a receiver with the gain turned up way past maximum. There is no escape. No way out. I’m flapping my hands, I’m repeating, over and over and over and over and over and over, “Stop it! Stop it! Stop it!”

And it doesn’t stop. I know how this ends. I’ve been here before. This is overload. Population one. My needle is pushed against the stop and every tiny increment is testing the strength of the fuse. It will blow.

I don’t know when. Maybe not even today, but at some point it will go. And I will be in meltdown. I feel it: some elements are leaking past my barriers. I’m trying to suppress it because I have to keep functioning. I have to keep going at any cost.

And I know that’s foolish. I know that the longer I strain to delay the inevitable the bigger the crash. And I still do it.

I’ve reached a lull. A brief spell where I can let the tension I hadn’t even realised was in my body dissipate. When I can breathe slowly and deeply. When I can rebuild my strength ready for the next assault.

Sensory overload is not something you get to switch off when it’s inconvenient. It usually comes on with a vengeance at times of stress. Talk about kicking you when you’re down!

This one has been building for a long time. Over months. The stress is why I’ve referred myself for counselling. I can’t write about it, not now, not yet. I’m not able to face those demons today. But one day, hopefully, I will.