Autism Acceptance Month

April is known as "Autism Awareness Month", but historically the messages spread during April have been damaging to autistic people, so something different has popped up. Created by autistic people in response to the problems seen in the former, "Autism Acceptance Month" is a more positive way to celebrate those autistic people you know.

Will you take the pledge? (click to do it)
"I pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people. I choose not to give my business or my time to settings that fail to include Autistic voices in conversations about autism."

Here are some of the reasons why awareness doesn't quite cut it:

Autism awareness - teaches people autism exists. I think we all know this.
Autism acceptance - teaches people autism is something worthwhile.

Autism awareness - seeks interventions to eradicate autism.
Autism acceptance- looks for ways to work with strengths. 

Autism awareness - wages war on autism. 
Autism acceptance - calls for a peace treaty and asks to work together.

Autism awareness - focuses on spreading messages of fear.
Autism acceptance - focuses on spreading messages of love. 

Autism awareness - falsely tells people that autism is an epidemic.
Autism acceptance - points out that autism is not new or out of control.

Autism awareness - says that families living with autism are miserable.
Autism acceptance - focuses on the joy of living with an autistic person.

Autism awareness - describes autism as a disease.
Autism acceptance - describes autism as a diversity issue.

Autism awareness - searches for a cure.
Autism acceptance - says autism is a good thing with no need for a cure.

Autism awareness - looks for a way to prevent autism before birth.
Autism acceptance - sees this as a hateful eugenics movement. 

Autism awareness - seeks donations/funding.
Autism acceptance - asks only for a welcoming smile and a supportive hand.

Autism awareness - aims to find ways to make the individual more "normal".
Autism acceptance - first embraces the strengths of the individual.

Autism awareness - shares hard parenting experiences to get its message across.
Autism acceptance - listens to autistic people.

This list could go on forever- feel free to leave more of these in the comments.

I have spent the last 15 years talking the talk, and walking the walk of autism acceptance, as a parent of an autistic boy who has raised him to be proud of his autism. Sadly, in all of those years, I don't think I have met any other parents who truly accept that autism is a positive part of their child. I would like to see that change. Sometimes I think parents see acceptance as being equivalent to giving up. But if acceptance is giving up, then it begs the question, what are they giving up on? It's an important point to consider.

I am thrilled that my son is proud of who he is, loves his autism and knows his strengths. I would like other parents to know that feeling too. I would like to see more parents embrace their child as a whole person and start working with autism instead of waging war on it. Because when you wage war on autism, no matter which way you look at it, you are waging war on your child.

So this April, when you think of autism awareness, try switching out the words and thinking about acceptance as a primary motivator instead.

Autism Speaks video "I Want to Say..."

The video is called "I want to say...". The organisation is called "Autism Speaks". I've said it before and I'll say it again, autism isn't doing the talking here.

I had thought this video might share more of what the autistics included in it wanted to say. Instead, parents are lovingly describing their kids. The doctor is intensely talking and telling us what to think. The teacher is sharing his heartfelt experiences and observations. The technology used by the kids is paraded before us occasionally, while adults describe their observations of how it appears to work well, almost miraculously. These voices are fine, in general. But really, where are the voices of these children we are watching? What is their message? What do they want to say? What was it like for these young people to finally be able to communicate? How did they feel?

This was a wonderful opportunity to allow them to share, to educate us on their experience. An opportunity sadly set aside.

Autism Speaks' latest promotional video is a vast improvement on the blatant scaremongering of the past, where they would show frightening scenes of screaming children, desperate crying parents and families in disarray. Before, they slapped us in the face with terrifying trauma and told us that was autism. Disappointingly though, I find this new one more cunningly manipulative.

There is still some clear intent to frighten viewers, with alarmist statements from the doctor, such as "more children will be diagnosed with autism than AIDS, diabetes and cancer combined". These things don't belong in the same sentence with autism, and this statement is offensive and irresponsible. It's an unreasonable comparison - all three of those others are potentially deadly and devastating diseases. Putting these together is Autism Speaks' cunning way of continuing to perpetuate their ongoing message that autism is a disease. They have declared war on autism, so I guess we shouldn't be surprised if they hold onto their original message in different forms.

Let's be clear - autism is not a disease.

Also, the intensely dramatic statements by the doctor make it seem like more and more children will get autism over the coming years, and we should all be very afraid. He is making it everyone's potential problem. It appears his role is to intensify the urgency of the "problem" and make people want to send money before their child gets autism. Without actually using the word, he is cleverly reminding us of the long time message of "epidemic". At least previously, they came right out and said it. It feels much more manipulative now, and honestly I find it disingenuous, condescending and offensive.

I loved seeing all the beautiful children and their experiences. I loved seeing the passionate parents who obviously love their children completely as they are, and only want what they think is best for their kids. (Sure, they made some mistakes, but it was a nice change to see adoring parents instead of overwhelmed parents on one of these videos). I loved the teacher, and his obvious humility in the face of the courage of his students. I appreciated his honesty when he described how he realised now, that he had previously pushed them so hard, without knowing what he had been putting them through. There was generally a lot more empathy expressed for the experience of the kids as well. I wish though, that the kids got to communicate more. Nobody was asking them questions for the video. I wanted to know what they were thinking, instead of having that guessed by and those guesses imposed on me by neurotypical adults. It seemed like it was more important to show a blend of minorities across genders (which I will say, is still an improvement on the previous videos), than to take a moment to hear what these young people had to share.

I always love seeing Temple Grandin on anything, she is so awesome. But where were the other autistic adults? And anyway, she was talking about her experiences as a child. Do Autism Speaks really still not realise that these same challenges/needs exist for adults? Or is this a  purposeful exclusion of autistic adults because they have clearer messages about what they want/need?

Other phrases/statements which bothered me:

"Swallowed by his autism" - in that particular case, he is swallowed by his pain, not autism. Autism does not equal pain and the two concepts should always be separated. And besides, the autism was already there, it is who he is. To act like it is a separate entity, some sort of invisible enemy swallowing him up, is not okay.

[Autism] "is a nightmare imposed"- the doctor should know better than to use alarmist words/phrases like this.

"He's really sweet, for being an autistic child" - this suggests that autistic children are generally something other than sweet. Apparently this boy must be very unusual, to be considered sweet. I know this is his mother (a layperson) who says it, not Autism Speaks. But Autism Speaks chose to include it in the video. Shame on you, Autism Speaks. How irresponsible can you be?


Click here for other flash blog posts on this topic


Click below to watch the video on Youtube:


What about the murdered autistic children?

All of the people in the list below were murdered as a result of their autism or disability. 

Credit for this list goes to Autism Wars - Until The Murders End. 
(NB: I think she, in turn, got the list from the Autistic Self Advocacy Network (ASAN).)

TIFFANY PINCKNEY 23, starved by her sister, 2005. | ZAIN AKHTER 12, Strangled by her mother, July 2010 . | AJIT SINGH 12, forced to drink bleach by his mother. February 2010 | BENJAMIN BARNHARD 13, shot by his mother, August 2011 | BETTY ANNE GAGNON 48. tortured to death by her sister and brother-in-law. November 2009 | CALISTA SPRINGER 16, smoke inhalation-chained to her bed by her father and stepmother, February 2008. | CHASE OGDEN 13, shot by his mother along with his sister Olivia, October 2010 | CHRISTOPHER DEGROOT 19, locked in apartment set on fire by his parents, May 2006 | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | DANIEL CORBY 4, drowned by his mother. March 2012 | FARYAAL AKHTER 2, strangled by their mother, July 2010 | FRANCECCA HARDWICK 18, locked in a burning car with her mother, October 2007 | GEORGE HODGINS 22. shot by his mother, March 2012. | GERREN ISGRIG 6 years old, died of exposure after his grandmother abandoned him in a remote area, April 2010. | GLEN FREANEY 11, strangled by his mother. May 2010 | JEREMY BOSTICK 11, gassed by his father. September 2009 | JEREMY FRASER 9 years old, died of recurrent leukemia alter his mother withheld the medication that would have saved his life. March 2009 | JORI LIRETTE 7, decapitated by his father, August 2011. | JULIE CIRELLA 8, poisoned by her mother. July 2011 | KARANDEEP ARORA 18, suffocated by his parents, October 2010. | KATIE MCCARRON 3 years old, suffocated by her mother. May 2006 | KENNETH HOLMES 12, shot by his mother. July 2010. | KYLE SNYDER 9, shot by grandmother, October 2010. | LAURA CUMMINGS 23, tortured to death by her mother and brother. January 2010 | LEOSHA BARNETT 17, starved to death by her mother and sister. May 2011 | NAOMI HILL 4, drowned by her mother, November 2007 | NOE MEDINA JR. 7 months, thrown 4 stories by his mother, August 2011 | PAYTON ETTINGER 4, starved by his mother, May 2010 | PETER EITZEN 16. Stabbed by his mother. July 2009 | ROHIT SINGH 7, beaten to death by his father, September 2010. | ROBERT ETHAN SAYLOR 26, asphyxiation during catastrophic police encounter, January 2013 | RYLAN ROCHESTER 6 months old, suffocated by his mother because she believed him to be autistic, June 2010 | SCARLETT CHEN 4 years old, drowned by her mother, July 2004 | STEVEN SIMPSON 18, doused with tanning oil and set on fire during his birthday party by party guests, June 2012 | TONY KHOR 15, strangled by his mother, October 2009 | TRACY LATIMER 12 years old. gassed by her father, 1995. | WALTER KNOX HILDEBRAND JR 20 years old, died of a seizure induced by his brother's physical abuse. November 2009 | ZAHRA BAKER 10, murdered and dismembered by her stepmother and perhaps her father. October 2010.

I have one simple message to follow this list - it is never okay to murder someone, even if they have a disability. We often hear people say, "Well, these parents must have been under enormous pressure. It's understandable really." But, quite frankly, that's an insane statement, which is only ever applied to murders of disabled people - and it is simply not true.

It's not understandable, okay or reasonable that someone can kill a baby, child, young person or vulnerable person in their care. I can understand that parents might be completely stressed out of their minds. I can understand that they might be pushed beyond breaking point. But this never justifies killing another person, disabled or otherwise. And certainly not a member of their own family.

I think that's the proverbial litmus test in this case. Perhaps you can for a moment try to imagine yourself, the parent, in an unbelievably stressful situation where your child has pushed all of your buttons and you're feeling utter rage, total helplessness, absolute exhaustion and complete overwhelm. Can you ever see in that circumstance that killing your child might be an okay or reasonable response to the situation? Is it the only course of action left to you? Is it the best thing you can do? Would it be merciful to your child to snuff out their light?

I can categorically state as a long-time parent of an autistic child, that it has not once, does not now, and never will feel okay or reasonable for me to kill, or consider killing, my own child, no matter what the circumstances. In fact it has never occurred to me. I'm pretty sure I'm not alone there! Furthermore, I cannot think of a single rational reason anyone could ever give me that would ever convince me that killing my child would be a worthwhile course of action.

These are not mercy killings and the murders are not reasonable, because the killers always had a choice, and the victims did not. They could choose to kill, or they could choose not to kill, and to find a different solution. If they were so desperately overwhelmed, they could have sought help. All it takes is a phone call. And if that one doesn't work, another phone call. And another. And another. As many as it takes until you get the help you need. I know this is true, because I've made those phone calls myself. Because I valued my child's well-being enough to never give up on finding a positive solution. Hmmm, a toss up between asking for help and killing my child. Tough decision, NOT.

Murder is not okay, regardless of the victim's disability status.

NB: This may seem a very dark topic to post on here, but it's imperative that the conversation not be snuffed out. These deaths cannot go unnoticed and without comment. Because the more we stay quiet, the more people will think it's okay. It logically follows that therefore it will happen more, and then more excuses will be made for killers, who will continue to get away with murder.

Autism Wars - Why are autistic people protesting Autism Speaks?

They call themselves 'Autism Speaks', but it's certainly not autism doing the talking. 

You may be too busy running your family, or your classroom, or just getting through the morass of your sensory day, to have noticed what's happening with Autism Speaks.
So here's a quick rundown - Autism Speaks is possibly the most powerful and most wealthy of all the non-profits associated with Autism. They raise vast amounts of money to put into autism research. They claim to know what families need, but they focus only on finding a cure, instead of providing supports to families and autistic people to help them through the experience of living.

They consider autism a disease to be eradicated.

They are a campaigning machine, and push hard for autism awareness - and more people are aware of autism than ever before. But their videos make regular people afraid of autism, exploit autistic children and their families, show only negative views of autistic children screaming and tantruming, even once showed a mother saying she had thought about murdering her son. These ads effectively erase the possibility of acceptance. After all, they are searching for a cure, their goal is to eradicate, so of course they will do what they must to prevent acceptance.

Autism Speaks also refuses to employ people with autism. In one famous situation they almost employed a woman in an administrative role, and she went through several interviews, but when they found out she had an autistic child, they dropped her from their list of candidates for the position. The board deciding what is best for autistics, and influencing the rest of the autism community's direction, refuses to allow in any autistic voice. Sadly, because of Autism Speaks, autistic people are more ostracised than ever before. They are seen as "less than". They are seen as something to fear. They are seen as an epidemic, a disease.

Autism Speaks are definitely not interested in hearing the real voices of autism. They are not interested in hearing what autistic adults are saying all across the world now, which is essentially this: "See me for who I am. My brain is different to yours, not diseased. Accept me, and help me with the things I find difficult. Stop trying to eradicate me, because frankly, that's hurtful and cruel."


Check out this response to the current ad campaign, written by the mother of an autistic person:

Autism Speaks, I Want to Say....
"Families placed their nonspeaking children before your cameras, trusted you to present their families fairly and your organization again went and turned them into "Jerry's Kids"."

What is Theory of Mind and why should I care?

Theory of Mind is the ability to understand that other people have different thoughts, beliefs and feelings to those of your own. It is the capacity to imagine what another person might be thinking or feeling in any given situation, and the ability to take a guess at their intentions. It is also known as empathy. 

In my observations, for an autistic person, it must seem like the world is filled with a bunch of neurotypicals who have no empathy. Autistics are constantly judged by neurotypicals, punished, assessed for their deficits and weaknesses, stared at, and moulded into different people to who they want to be within themselves. They are told they need to be cured, that the way their minds work is a disease, and is quite simply not acceptable.

To add insult to injury, autistic people are constantly told by neurotypicals that they have no empathy or Theory of Mind.

Can you see the irony here?

Check out this article for a deeper understanding of Theory of Mind and why it matters how we discuss it:

Psychology Today: Guide to Reporting on Autism: Theory of Mind & Empathy

Challenge the standard paradigm

You don't have to do things the way everyone says you need to.

I know, it's out there thinking, but I know you can handle it. It's completely okay to look at the whole picture and decide on a plan which suits your child. Be unconventional and don't force yourself and your child into a box dictated by others. They aren't living with the circumstances you are experiencing, so they aren't the best people to judge.

Above all else, trust your instincts. After looking at your child's needs without all the chatter and influence of other people, if you have a unique solution for your child, then you're on the right track.

Check out this example: Social skills: context matters, for a different approach.