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.

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.

Selling Sanctuary – The Poison of the Anti-Vaccine Cult

With diagnosis rates in the United States as high as 1 in 68, there are a lot of parents who get told their child is autistic. What they don’t get told is what that means. They are left to find information by themselves.

This is a vulnerable time. These parents are faced with a huge amount of unknown. The way they had imagined their child developing, their hopes and dreams, lie in ruins. They literally do not know what to do, where to turn, who to go to.

Many of them, through luck, find supportive groups where they can talk to families who have gone through this emotionally turbulent experience before and can relate to them, educate them, and thereby help develop understanding and acceptance for the autistic child.

But a few fall into the hands of a much less wholesome crowd: those who believe against all the evidence that autism is the result of mythical “vaccine damage”.

Make no mistake: the anti-vaccine cult might spout platitudes about how they are protecting children but the reality is far from that. This is how they operate.

They start by telling parents that their child’s condition is their own fault because they allowed them to receive “toxic” vaccinations. They play on the guilt and fear, supplying literature that paints a terrifying picture using a mix of lies and misrepresentation of facts to provide the suffering parents with an excuse, an external “bad guy” to transfer the blame to, and so assuage their own guilt.

They basically tell the parents that, yes, they did wrong, but if they follow the anti-vaccine path they can save others and become saved themselves. Yes, it is exactly like religious cults.

  • They claim to have all the answers.
  • They claim that everyone outside the cult lies, that they have been corrupted.
  • They attack or otherwise punish people who stray from the beliefs.
  • They manipulate people through fear and guilt.
  • They have charismatic leaders and promote personal loyalty to the leadership.

In the eyes of the anti-vaccine cult members, the big bad is so-called “Big Pharma”, a conspiracy involving every drug company and hundreds of thousands of scientists worldwide. All these scientists are supposedly being paid to fabricate studies and show that vaccines are safe.

You can see how implausible that is: companies like Novartis, Pfizer, Sanofi, AstraZeneca all collaborating, working together to promote vaccines even as they compete in every other area. And they are paying huge bribes to all those scientists, not one of whom has ever come forward and spoken about it. Literally hundreds of thousands of people involved worldwide and not one breaks the silence. They are all keeping the secret.

Yeah. As if that’s ever going to happen, right? HBO can’t even keep the upcoming plot of Game of Thrones secret!

But, if you’ve been carefully prepared mentally and led up to the revelation about the conspiracy you aren’t looking at it critically. You have been made to feel that your child is broken and it is all your fault. You want answers. You want someone to blame.

And that is when they plant the “Big Pharma” story in front of you, and you grasp at it like a drowning man.

You become invested in the belief system, in the story, because it gives you an excuse for your sinful actions: you were tempted by the devil in the guise of Big Pharma and their doctor shills.

But you are offered a chance at redemption: support the cult, spread the word, be an anti-vaccine evangelist and you too can save people from this evil.

Because it is a belief system, because people are sucked in so deeply and become so personally, emotionally invested in the cult, it is incredibly difficult to get through to them. All but impossible to reason with them.

If you say anything that contradicts or questions their beliefs you are automatically putting yourself on the side of the devil and are to be fought. There is no room for the critical thought that underpins rational behavior. These are people on a mission from their god and any obstacle is the devil’s work.

I don’t know if the leaders believe what they are espousing; I suspect they probably do but that is irrelevant. They are running a cult, plain and simple. The lack of overt religious terminology and its substitution by pseudo- and fake-scientific mantras does not make it any less belief-centered than any other cult like Scientology.

These anti-vaccine leaders are luring well-intentioned but naive parents astray by feeding them a diet of lies and half-truths. Instead of helping their autistic children, they end up harming them because the whole belief system of the cult rests on convincing parents that their children are damaged. That autism is a burden, a curse, a judgement from on high against them.

That does not lead to an environment where the children are accepted. And I haven’t even touched on the very real harm done to entire communities when a substantial number of children are unvaccinated. That is a fertile ground for the spread of preventable, potentially-fatal diseases like measles, mumps and rubella.

Because of the success of vaccination programs the effects of these diseases are not as well-known today, and most people think of them as relatively benign. But they are not. They cause lifelong health problems and death in a surprisingly high number of cases. Much more serious consequences with much higher rates of incidence than the rare adverse reactions to vaccines.

So if you really want to know where the poison is to be found, it’s in the mouths and minds of the anti-vaccine cult. Don’t let more people fall victim to them.