The Autism Abyss

So Sesame street made an announcement in 2015 that they were introducing a new character to their lineup. Julia is the first new Muppet on sesame street in ten years, noteworthy enough in itself, but the 4-year-old green-eyed girl has caught the attention of news outlets everywhere for one reason. She happens to have autism.

To me this seems pretty great really. Sesame Street is watched by millions of children every year and has played a huge part in the young lives of many people around the world. When much-loved Mr Hooper died in real life, the characters on Sesame Street wonderfully commemorated his passing by teaching children about death. They used a tragic event to educate, which is commendable.

From the very beginning, Sesame Street has been about as diverse as you can get, teaching children that the colour of your skin doesn’t matter, nor does religion or ethnicity, every individual is important and special in the world of Big Bird and Elmo.

Every episode of the show has yet another lesson to teach children, whether it be alphabets, numbers, singing or playing, the characters teach children as they sit and watch the normally brain-draining television screen. Julia will be a great way for children to learn more about the condition, and she will also help to normalise autism, as she will not be defined by the condition, but instead she will be her own developed character that just so happens to experience the condition.

During my interview with Catherine, as her daughter Lucy bubbled and laughed in her buggy, a point came up that reminded me of Julia and particularly the backlash against the character. It was something I had been thinking about for quite a while. When discussing vaccines with many people, the same study comes up, Andrew Wakefield’s study linking the MMR vaccine to rising rates of autism sparked international fear and a worrying trend of regarding autism as worse than death.

In my personal opinion I feel that the rising rates of autism are simply because we, as a society, are better at recognising and diagnosing the condition. It seems to be pretty straightforward that this is the case, but unfortunately thanks to Wakefield’s study there is a huge section of society that is convinced that giving their child vaccines will make them autistic.

Mike Adams, the self proclaimed “Health Ranger”, wrote an entire article about Julia that is sickeningly offensive. He begins the piece by saying,

“In yet another sickening example of the absolute mental derangement of modern society, Sesame Street has rolled out its first autistic muppet.”

Adams goes on to spew more vitriol about how vaccines do in fact cause autism and how concerned he is that the trend Sesame Street has started will soon see a “chemo boy” muppet, who loves chemotherapy, and even an aborted fetes muppet that talks about how its tissues are being used in stem cell research. It reads like satire, but depressingly it’s not, and it’s definitely not the only example of the anti-autism rhetoric that lies within the anti-vaccine movement.

When I watched the movie ‘Vaxxed’, a movie I would not recommend to anybody unless they were keen on seeing a perfect example of cherry picking bias and emotional manipulation, One parent named Polly said something that pissed me off so much I had to leave the room and make an angry cup of tea.

She and her husband were talking about their son, Billy, who was on the autism spectrum. The clips of him so far in the movie had showed him getting frustrated and angry at his inability to communicate what he wanted, but to be honest his communication was pretty good compared to some people with autism I’ve seen before. He made eye contact, he spoke sentences, he seemed to be pretty high functioning.

So when John came on the screen and talked about what happened to Billy after he was given the MMR vaccine I was shocked at his callousness.

“That was the time where he changed from what he was to…” John pauses here as tears well up in his eyes, he makes sure to leave enough of a gap to ensure the audience can see the heartbreak on his face, “a real tragic tragic case of a child who regressed into this autistic state and lost everything, lost everything.”

Okay, I thought, I understand how difficult that must have been, to see your happy carefree child suddenly become withdrawn and less interested in the world he was so fascinated by just weeks before. If that is what happened. I struggle to believe that the transition was as quick as they were making out, but I have no proof to back up my suspicions, so I’ll cautiously take their word for it.

Polly then comes on the screen, the same tears as her husband, looking as if somebody has just nipped off screen after applying them with a pipette, and says something that just disgusts me.

Out there, there’s millions of Polly’s,” she says, “I am telling you this because I do not want you to go through the life I am living,” the self-proclaimed martyrdom practically drips off her, “I don’t want you to suffer. It’s not my concern, my kid’s already damaged.”

My kid is already damaged.

Damaged.

To Polly and John their son isn’t their son anymore. He is a shadow of potential. He is the son that could have been if it hadn’t been for the demonic presence of autism. It is disgusting, and I really really hope that Billy never watches that documentary and sees what his parents really think about him, because I think any child who realised that his parents think of him as damaged would have a truly broken heart, not the played up attention seeking broken heart that John and Polly displayed in ‘Vaxxed’.

In fact the level of autism shaming in the entire movie is horrific. These people seem to have the impression that their child potentially getting autism is worse than their child potentially dying a painful death from a preventable disease. And how fucked up is that?

If you had two choices in front of you, one was having to watch your child struggle for breath as they slowly died, and the other was having your child grow old with a condition that, if caught early on, is something that is quite easily treatable in this day and age, which would you choose?

I know which one I would choose.

It’s not just ‘Vaxxed’ either unfortunately. Before the movie was even made, Jenny McCarthy was on Oprah saying this:

“Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot. And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter-boom-the soul’s gone from his eyes.”

The narrative of the ‘soul’ leaving his eyes, or as so many other parents have said, the ‘light’ leaving their children’s eyes as the autism took over and replaced their child with one they no longer recognised is simply a way for parents to describe their own gutted feeling of disappointment.

I’ve met and known many people who have been diagnosed with autism or Aspergers and in most cases I wouldn’t have even known unless they’d mentioned it. I’ve seen some of the more extreme cases of autism and I can understand it must be extremely difficult as a parent, but as Catherine said during our conversation, “Sometimes anti-vaxxers get annoyed with the media coverage that we’ve had, and they say things like who cares about Riley, I lost my son too, I lost him into the autism abyss, and I want to say that it’s just not the same. I can’t talk about having an autistic child, I don’t have one, but surely it’s not the same as losing a child to a preventable disease.”

It’s not. People with autism often live extremely fulfilling lives, but the negative language used in ‘Vaxxed’ suggested over and over again, that if a person has autism there is no way they can possibly live a life of anything other than sadness, misery, and wasted potential.

One parent compared her two children, one who was autistic, the other who wasn’t, and said how distraught she was that her son would never live a fulfilling life and how this wasn’t the life she wanted for her son. I couldn’t believe what I was hearing. I left England after school and decided to go travelling rather than heading straight to university. I drank, I smoked, I did reckless, dangerous, stupid shit everywhere I went, and eventually arrived in Australia, met a girl and decided to stay here for the rest of my life.

I’m one hundred percent sure that my Mum wouldn’t have expected that this would have been my life and she might not have wanted my life to be this way. As any mother would, I’m sure she struggles with her son being on the other side of the world to her, but just because my life didn’t pan out the way she might have expected doesn’t mean she loves me any less or that my life is less fulfilling.

Parents expectations are always going to be high for their children because they want the best for them, and it must be difficult when your child is diagnosed with a condition that will inevitably limit them from the activities or pursuits that you might have imagined them doing in their lives, but who’s to say that they will not still have a life full of joy and love, adventure and extraordinary stories?

I think of the people with autism in our society working jobs, forging relationships, living lives the same as any of us, and I wonder how offensive they must find the concept of refusing vaccinations in the slight chance their child might become autistic. It is as if the anti-vaccination movement have a view of autism as a life destroying curse that is essentially a death sentence. But that’s just not true.

It also concerns me slightly that those with autism never seem to be invited into discussions surrounding this issue. Is everyone just too afraid to be discussing the condition in relation to vaccines when somebody is there who experiences the condition? Like they are embarrassed by the idea of talking about the elephant in the room when the elephant is standing right next to them, listening carefully.

I decided to contact a man who commented on a Reddit thread about vaccinations. His initial comment was about his autism and how he finds it pretty offensive that people hold this anti-autism opinion. But during our short discussion he actually mentioned his condition very little, and instead spoke at length about his wider opinions on the issue. I enjoyed the conversation because it was interesting, but I think I almost enjoyed it more because it wasn’t all about autism. He was annoyed by the anti-vaxxer views of people with autism, but seemed to be more interested in not letting it become his only reason for input to the discussion. He had other things to say and they didn’t have to stem from his condition.

I also wonder how it even got to this stage. I have a theory that we live in a world lucky enough to have a culture of acceptance built into our western society. Especially my generation. We have grown up in a world where it is okay to be gay, it is okay to be black, it is okay to be different in just about any way. Look at Mardi Gras in Sydney, look at the clubs and societies all over the world that promote LGBTQ rights, they all serve to bring about equality and diversity in equal measures. But I am concerned that perhaps our culture of acceptance has gone too far and begun to stray into dangerous territories.

Perhaps one of the reasons for the rise of the anti-vaccine rhetoric is our collective societal belief in acceptance and allowing people to voice their opinions. I heard a quote once that said “opinions are like nipples, everyone has them but it isn’t always appropriate to start flashing them around in peoples faces”, and it’s true. Everyone has the right to an opinion of course, I’m sure that I have opinions that would jar with the opinions of those reading this, but that doesn’t mean I have the express right to shout about it and preach it from the rooftops as if it is undisputed fact.

The right to freedom of speech technically doesn’t exist in Australia, it is an assumed human right, but that doesn’t mean that you can say whatever the hell you want to whoever the hell you want. As soon as your freedom of speech begins to infringe on other people’s human rights you’ve got to stop.

But we live in a time that is so keen to promote equality and fairness that the anti-vaccine rhetoric has been allowed a platform. The media are so concerned that they need to be getting an equal, balanced view of the issue at hand that they have caused people to think that the vaccination issue is an actual debate that is polarising scientists. It isn’t. There is no debate, in fact I was told off for emailing Ken McLeod from the ‘Stop the Australian Vaccination-sceptics Network’ and referring to it as a debate.

“Firstly, there is no ‘debate’,” Ken wrote, “the science is settled; vaccines are safe and effective. Posing this as a ‘debate’ only gives air-time to the lies pushed by the anti-vaxxers. So you can see that while well-intentioned, posing this as a ‘debate’ is no mere academic exercise; in the real world, words can kill.”

From that point onwards I have never referred to this issue as a debate again.

But why is it that this culture of acceptance allows the anti-vaxxers to speak their rhetoric, but also allows for the autism shaming that occurs within the movement? Why do people with autism not deserve acceptance as well? Why are they referred to as ‘damaged’, or ‘lost to the autism abyss’?

Is there a hierarchy of acceptance that I am not aware of where exposing a child to preventable, fatal diseases is more acceptable that the perceived risk of autism?

Most people know that the autism link is incorrect anyway, the paper was redacted and Wakefield had his medical licence stripped, rightfully so. But the damage was done and some people still believe that the link exists. Films like ‘Vaxxed’ that pose as factual documentaries but are in fact just exploitative, incorrect, emotionally blackmailing, anti-vaxxer propaganda only serve to further the disinformation that began with Wakefield’s study.

I felt like reaching through the screen whilst I watched the film so I could slap Polly and John around their faces. Their constant self-pitying comments of ‘suffering’ and ‘pain’ and ‘their terrible life’, was one of the most delusional and pathetic things I have ever seen. Having met Catherine, who literally lost her child, and still carries herself with a dignity that quietly demands admiration, the two parents of Billy simply came across as deplorable attention-seekers.

I understand that it must be difficult to live a life with a child who has autism, but he is still alive, he is not “damaged” as you put it, he is a young man who simply needs different levels of attention and care than you were expecting. I have never seen a woman and a mother behave so casually callously towards their own child. I audibly gasped when she said the word damaged.

I am not under any impression that Polly and John will read this, mainly because it wouldn’t line up with their preconceived ideas and cognitive dissonance is a real bitch, but if they ever do I would like to say something to them.

Fuck you.

Both of you are enabling this disgusting rhetoric that autism equals bad, autism equals damaged, autism equals a terrible unfulfilling life of suffering and sadness. It’s the biggest load of hypocritical shit I have ever seen. You sit there and pine about how people don’t accept your incorrect and misinformed opinions whilst you cry your tears and refuse to accept that autism isn’t a death sentence.

Frankly, it disgusts me that this documentary ever even got made. The people who funded it, participated in it, and marketed it should be ashamed of themselves. I wanted to not even write about it because it angered me so much and I didn’t want to give it any possible advertisement, but I felt that it was important to mention as one more piece of anti-vaxxer propaganda crap.

It pissed me off even more after thinking about it all for a little while because, damn it, I so badly wanted to write a story that tried its very best to understand the anti-vaxxer point of view as something more than just conspiracy theories and idiots, but I’m really beginning to believe that I might have been wrong in thinking that anyone who believes the anti-vaxxer crap is anything more than mentally deficient.

Polly and John and the other parents who took part in this film sit their on camera and make these grand claims that will never be backed up by science and seemingly relishing their positions as ‘victims’ of vaccinations. I sit there in front of the television and I shout at the screen, “He’s still there! Your son is still with you! Your baby boy was lucky enough to grow up and have a life!”

They sit there and wax poetic about how he will never be the man they wanted him to be. No. Fucking. Shit. No child is ever the exact person their parent imagines when they hold their baby in their arms for the first time, but most parents who are good people don’t care, they just want their child to be happy and outlive them. I am thankful that I am not Polly and John’s child, because unconditional love doesn’t seem to have ever been added to their vocabulary, let alone become a part of their moral character.

If Billy ever reads this I want him to know that he isn’t damaged at all. He isn’t injured. He doesn’t have to live an unfulfilling life just because his selfish parents can’t see past his condition. He is a person first and foremost, not just a diagnosis, and he can live a life that is as fulfilling as anyone else. He is not limited by anything other than the parents who exploit and limit him.

I think what disturbed me most about this movie was when I headed to IMDB after it finished and saw that the ratings section had evidently been taken over by anti-vaxxers, who all gave it ten star reviews. There were so many people praising the film as if it was this great exposé that blows apart a cover up by the CDC, when in reality all the film is doing is cherry picking pieces of information that lend credence to their existing beliefs in a huge echo chamber that results in propaganda-like fear-mongering.

The film viewed as more of a mockumentary than anything legitimately worthy of being described as a documentary, it seemed scripted and faked and just downright dangerous. As I said before, I didn’t want to write about it but it was a huge turning point in my mindset about the anti-vaccination movement. I went from being relatively open-minded about discovering more about the anti-vaxxer point of view, to doing research and finding that being open-minded is pointless with these people. They’re wrong, that’s all there is to say about it, and they are selfish, and they are greedy, and they spread fear like wildfire throughout society, and for that they should be condemned.

Watch the movie if you have to. But when you’ve watched it- if you make it all the way through- I can guarantee you’ll have the same response as me. The simple fact that the film was directed by the disgraced, snake-like, Andrew Wakefield, is enough of a reason to disregard anything the film has to say about anything. It would be like watching a film titled ‘How To Love Your Family’ directed by Josef Fritzl.

People who experience autism are not damaged, they are not injured, the light hasn’t gone from their eyes, and if you think that any of that is not true then maybe go and do some research into autism, read some work written by people with autism, meet people with autism, and then come back and tell me that they are damaged people. Or better yet, try and say it to their faces, if you have the ability to do that then maybe you should go and watch some Sesame Street before I say the same thing I said to Polly and John.

Fuck you.