'Sesame Street' Partners With Autism Speaks: Why Are Autistic People Upset?: a repost

I wrote this  earlier this month and it was originally published on The Huffington Post.  I am reposting here now, in an attempt to continue to spread the word.....

'Sesame Street' Partners With Autism Speaks: Why Are Autistic People Upset?

One of the most important things I have learned as a parent to autistic children is the value of listening to autistic adults. As a person who is not autistic, listening to autistic voices is essential as they can give me an insight into my children's lived experience that I cannot gain anywhere else. As K, from Radical Neurodiversity Speaking says:

The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.

I agree with all of K's reasons too -- autistic people are awesome to hang with, loyal friends who care deeply about their friends. My kids benefit from me being tapped in to autistic culture, and will more easily have access to role models themselves if I have autistic friends. If I don't introduce my children to autistic adults, how will they meet others like them? But don't just take my word for it, read what K says for yourself,here.

Because I value the voices of autistic people as a way of supporting my children as they navigate life in a world not made for them, when I hear my autistic friends say they are upset about something I want to know why.

Recently, my friends have been telling me they are upset about the partnership between Autism Speaks and Sesame Street to promote acceptance of autism as a form of diversity. Sesame Street is really good at promoting diversity. The reason my friends are upset is not that Sesame Street wants to focus on autism -- it is that Autism Speaks is involved. And I think they have a point.

I have written previously about Autism Speaks here and here.

The key issues I have with Autism Speaks are that:

1. 1. they claim to represent autisiic people, but have no autistic board members;
2. 2. they put more of the money they raise in the name of helping autistic people into researching to eradicate autism, and therefore autistic people, than they do actually helping them (in fact, they pay themselves more each year than they put into helping autistic people); and
3. 3. they convince people to donate to them by sending out a message that Autism is a tragedy, burden and disaster that ruins entire families lives, and that Autistic people and their families are constantly suffering and barely living.

I, for one, do not want an organization that aims to get rid of my kids neurologies helping with a project that is designed to promote acceptance of autism. My friends don't want Autism Speaks speaking on their behalf in this way either. They are justifiably upset. And they are speaking up for themselves to let people know they are upset.

Amy Sequenzia says:

Sesame Street, this is an Autistic speaking.
Don't partner with an organization that silences us. 
We are proud of who we are and we want all kids to feel this way.

Lei Wiley-Mydske explains:

I am an autistic parent to an autistic child. I grew up watching [Sesame Street], and my son has too. I encourage you to end any partnership with Autism Speaks if you wish to truly celebrate diversity.

I would be THRILLED to see autism portrayed on your show, but not when the message is one of despair and fear. Or one that would pretend that disability is shameful.

In developing this project, please remember that autism is not something we do to our families, or our communities or anyone else. Autism is how my brain works and interprets the world around me. Our stories deserve to be told with US doing the telling. Not with someone else speaking for us. Again.

Please don't allow a group like Autism Speaks continue to dominate the conversations about autism. They do us harm. You do us harm when you partner with a hate group who wants to prevent people like my son and I from existing and spreads harmful and dehumanizing rhetoric about us.

There are others speaking up too. Not just autistic people, but parents of autistic people and friends of autistic people. There is a whole movement dedicated to addressing this problem. If this is an issue you would like to help do something about you can find more information at Boycott Autism Speaks Facebook Page. On Twitter check out hashtags #BoycottAutismSpeaks and #EducateSesame You can also sign a petition to Sesame Street here.

Autism, Stigma and Murder: a repost

Note: I wrote this article on 25th April 2014, and it was originally published at The Huffington Post.  It is  similar to an article I posted on Different kids of normal, but written specifically related to Autism.  

Trigger warning for discussion of murder of disabled children, and discussion of the stigmatisation of Autistic people.

April. Autism Awareness Month. And another murder. Sixteen-year-old autistic boy Robert Robinson was murdered by his mother, who then killed herself. News reportssay she couldn't cope with her son's allegedly violent behavior and the lack of support she had in caring for him. So they sympathize with her. They encourage us to feel sorry for the woman who murdered her son. They want us to pity her and justify her ending her child's life by blaming her stress on him being autistic and his "violent" behaviour.

There have been other children murdered by their caregivers over the years. Too many to name.

How do we get to this point as a society? How is it OK to learn that a child has been murdered by their parent and then feel sorry for the murderer?

Are you familiar with the term "stigma"? 

stigma
noun
shame, disgrace, dishonor; stain, taint, blot, blot on one's escutcheon, blemish, brand, mark, slur

How about "stigmatize"?

stigmatize
verb
condemn, denounce; brand, label, mark out; disparage, vilify, pillory, pour scorn on, cast a slur on, defame, discredit

There are lots of things that people can be stigmatized for. Some stigma is quite subtle, falling into the "label" category, some is more obvious and in the "denounce" category, and some really noticeable and easy to see as vilification. 

Here's what someone said to me last year when I told them I have two autistic children:

"Oh, no! So what do you do? Are they like real members of the family?"

The reason people feel sorry for me when they find out my kids are autistic is that they don't know anything about autism except that it makes them hard to live with. They know this because the media tells them.

And this is what I'm talking about when I say "autism awareness" doesn't help autistic people, and that the media has no place blaming autistic children for their own murders.

So instead of listening to the facts being spoken by autistic people and their allies, people listen to the media tell them that autistic people are violent and difficult to live with. So society moves down the slippery slope of assumption until it reaches the point where vilifying children based on a diagnosis is acceptable. 

Did you know there are autistic adults all around you? They are working as doctors and nurses, teachers, ambulance officers, cleaners, artists, writers, professors, journalists, pilots, executives, actors, sportspeople, good parents. But many of them don't tell you they are autistic because they don't want to be stigmatized.

When they were younger, they were kids who were just like Robert Robinson and all the other children who have been murdered by their parents for being autistic.

Some were nonverbal as children, some still are nonverbal as adults and are making significant and valuable contributions to society as writers and poets, and some were labeled "violent" as children and are now working with children like them as their mentors.

So why do the media report on murders of autistic children by blaming the children and sympathizing with their killers?

Well, basically, they do it because it sells. 

People want to hear that story. It gets ratings. They do it because the public wants to hear it. And for that we should all be ashamed. We are encouraging the media to help perpetuate the stigma against autistic people.

We accept these stories without batting an eyelid because we have already been primed to believe that disability is bad and we don't bother to question it.

When we sit quietly by and listen to this discourse, we are complicit in the murders of innocent people. 

When we sit silently and fail to question the assumption that mental illness or disability is the cause of violence, we support the media in their continued assault against people like my children, who just want to do what they need to -- and receive the supports they require -- to live their lives as productive and happy members of society. 

Are you happy to let Robert Robinson's death be blamed on him being autistic?

Are you happy to be part of the continued stigmatization? 

[Amazing Adventures Autism] Expressions of PosAutivity: #AutismPositivity2014

A letter to MissG

When you were a baby we paid close attention to learn your cries. We came to recognise when you were hungry, when you were tired, and when you were overwhelmed by your surroundings. We didn't need to hear words from you. Your cries spoke to us and we listened. We did our best to meet your needs, even though you couldn't speak them to us.

When you were a toddler and you would fall over or find yourself hurt, you didn't want me to touch you. I longed to give you a hug, to rub your back, but you would push me away. You were teaching me that I can show my support and love without touch. All you needed from me was to be present and wait for you to be ready for my touch. And when you were ready, the snuggles were priceless.

When you started to want to play with others but things didn't go well you would scream out. It was hard for your brothers and sisters to listen to those shrill screams sometimes. Your dad and I tried to help everyone understand that you couldn't find words when you were stressed. We tried to help you by giving you phrases like "stop, I don't like it". Slowly, you found your voice, and we were so careful to listen when you used those precious words. If you said stop we stopped, even if we couldn't tell quite what the problem was, because you were telling us with the only words you had that something did not feel right. You taught us your need for control over what happened to your body and how important it was for us to respect that.

When you are frustrated and overwhelmed you can't speak to me to explain why. It can be so hard to see your pain and not know how to help. But you taught me that compassion does not always rely on knowing the specifics of a situation. All you need from me is that I be present with you and wait until you are ready to explain. 

Now you have started to be able to draw me pictures of what troubles you. I love those pictures. They are as much your voice as spoken words are. They tell me you want me to know, that you value my support, and that you believe I can help. 

As you get older, I wonder if you will begin to type to me as your big brother does when he has lost his words, but I know it doesn't matter whether you do or not. You will still always let me know what you need in your own way. And I will always be listening. 



This article is part of the 2014 Autism Positivity Day Flash Blog. 

What I hear when you have compassion for parents who murder their children

OK world, let's get something straight.  You need to know what I hear when you sympathise, empathise and otherwise have compassion for people who murder their children.

When you say "oh the poor mother, she must have been so stressed, she had no support, I feel sorry for her, I can understand why she killed her son", I hear you saying to me:

"If you kill MasterL or MissG, I will feel sorry for you."

That is wrong. It is so wrong it makes me sick to my stomach.

I also hear you say that their lives are less valuable than my other children's lives. I hear you say that my life is more valuable than their lives. I hear you say that because they are not "normal" they can be disposed of and that would be understandable.

I'll say it again. That is wrong and it makes me sick.

I know that is not what you think you are saying, but it is what I hear.

And when you try to shame me for not having compassion for a murderer by asking me if I know for sure I would never kill my child.....  I have to walk away from my computer for hours, and am unable to eat for that whole period of time because I feel so nauseated.

When you make excuses for parents who murder their child by saying "oh, they must have been mentally ill" my skin crawls.

What I hear you saying is that my husband, who is Bipolar is more likely to kill our kids because he has a "mental illness", when in fact the research clearly shows he is actually more likely to be bullied by you and discriminated against by you than he is to ever hurt one of our kids.

So, you know what? Shut up the lot of you. Close your mouths and really have a think about what you are saying, what you are implying, and how your words impact other people. Every time you make comments like these you help to increase the stigma against my whole family and you endanger my children's lives.

Speaking my truth

During #AutismAcceptanceMonth is a good time to talk about Autistic safe space. This is incredibly  important information for people to understand.  Please read this article from Cynthia at MusingsofanAspie.

So often when looking at Facebook pages and websites about Autism, I see parents talking about the importance of sharing their experience with the world. They argue it adamantly, over the top of all other voices, stating their right to free speech, their right to be heard, their right to support. 

I've been struggling with this because I do believe that everyone has a right to speak their own truth, but I have trouble reconciling that belief when I can see a persons words damaging others. I see some people trying to silence others because their truths don't match up.  

Reading Cynthia's article today helped me clarify some thoughts I've been processing and I'd like to share those with you. 

Cynthia says, 

"I think of autistic safe space as a kind of middle ground, between autistic friendly space and autistic space. There isn’t necessarily a clear definition of each of the three, but for the sake of helping people new to these concepts understand them better, I’ll take a stab at describing them.

Autistic friendly space tends to be predominantly allistic space which has been modified to make it more welcoming to autistic people. For example, sensory friendly film showings or an event that features flapping instead of clapping, is held in a hall without fluorescent lighting, requests attendees to be fragrance-free, provides communication badges, has a quiet area and does not allow flash photography.

An autistic person isn’t necessarily going to feel totally comfortable in autistic friendly spaces, but there are considerably more accommodations made than in the typical public space.

An autistic safe space takes the concept of autistic friendly space one step further, putting the autistic person’s needs first. Often safe space has a greater emphasis on safety with regard to identity and expression whereas friendly space has a greater emphasis on disability accommodations.

Online, autistic safe spaces are very much about safe speech. In person, the concept is extended to physical expression, meaning that things like stimming and atypical communication are welcomed and accepted rather than simply tolerated. Safe spaces are often a place to explore difficult topics and push at boundaries without the fear of rejection or humiliation.

Autistic safe spaces can be mixed spaces, but are generally autistic led. Sometimes this works out really well, with people of different neurologies sharing experiences and learning from each other. And sometimes it turns into a disaster. I’ve seen both cases firsthand and, ironically, when things go wrong in a safe space, people can be hurt badly. Much more so, it seems, than when things go wrong in typical public spaces.

Finally, there is autistic space. I was going to define autistic space as one in which all participants are on the spectrum, but then I realized that my home is autistic space. It’s a place where I feel completely comfortable to be myself and where my communication style is honored. It’s a place where I have minimal sensory distraction. A place where I know what to expect.

Perhaps autistic space is a cultural construct rather than something that is created strictly by the neurology of the participants. And that feels like an idea that’s too large to get into in the final lines of a post, so I’m going to set it aside for another day."

This is something I work hard on here at Amazing Adventures parenting Autistic children.  

To be honest, as a non-autistic person, I am unable to keep this page as Autistic space, or even Autistic safe space.... because I do not know what it is like to be Autistic, and therefore cannot always anticipate what will make a space unfriendly, but I am learning. I am trying to do better than just having an Autistic friendly space, but it will take time and more learning. 

To that end, I do my utmost to keep my blog and my page Autistic friendly space. You may from time to time notice that a comment has been deleted, or that I do not repost some things shared on my page. This is because they are things I know from having spent time with and listening to Autistic people that those things make a place unsafe. 

And, as Cynthia says, there are some things that will always be completely unacceptable. You will never see me speak about my children making my life harder. You will never see me supporting the "Autism is a tragedy" message. You will never see me favouring the voices of non-autistic people over Autistic people on the topic of Autism. 

There are three reasons for this. The first is that to do any of those things would hurt my Autistic friends. The second is that assuming doing those things would hurt my Autistic friends, I also assume it would hurt my Autistic children. I am not prepared to do either of those things in order to make myself more relatable or readable,  to increase traffic to my blog or page, or to fit in with the status quo. The third reason is that I value my integrity, and I will not speak things that are not true for me. My truth is important to me. 

I will always speak my truth unapologetically.

And the truth of my life is, it is hard. 

Parenting is hard. But that is not my children's fault.

Being a wife is hard. But that is not my husbands fault.

Being a student is hard. But that is not my teachers fault.

Being an advocate is hard. But that is not your fault.

It is just life. It is how it is. This is fact. 

My life is my responsibility. I have chosen everything in it. I continue to choose everything in my life everyday that I don't walk away from it all. It is hard. It is mine. 

And my truth is that even if it is hard, I do not choose to walk away to something easier, therefore I will not complain to you how hard it is.  

Some will say that not telling how hard things are all the time makes me inauthentic, unrealistic and a phoney. Some will say that it is important to tell the struggles so that other parents know they are not alone. Some will say that failing to acknowledge the difficulties publicly invalidates the experience of others. 

I say that insisting I do all those things would make me inauthentic, leave me isolated from those who share the same experience as I do, and would invalidate my experience. 

Our truths do not align. Yes, they are entitled to speak theirs. When they are individuals I do not go into their space and tell them they are wrong. I simply avoid their space (this changes for me when the person speaking represents an organisation, but that is not what I am talking about here).

I do not live a life so difficult that is is miserable. I do not need to hear each individual story to know there are others out there who find things tough. I do not need to hang around with people who want to focus on the hard stuff. I do need support from those who are trying as hard as I am to remain positive and proactive. 

I will always speak my truth unapologetically.

I hope that other individuals will respect my right to speak my truth, and rather than stepping in to my space to educate me, they will simply avoid my space. 

In my space I will continue to speak my truth unapologetically, and I will do everything I can to keep my space safe for my Autistic friends and family members.




To my Autistic friends, I am sorry. 

I am sorry that all too often you have to deal with spaces that are not Autistic friendly, let alone Autistic safe.  

I am sorry that I sometimes let you down. 

I am listening, though, and I hope I am learning enough to improve in this area. 

I want to thank you- for being patient with me, for being open with me, for teaching me when you have no obligation to. 

Thank you. 

You are all making such a difference in my life, and in the lives of my children. 

I will do whatever I can to make this space safe for you, and for my kids. There are so many places that I know you do not feel safe in. I hope this is a place you can come and feel heard and be safe. 

World Autism Awareness Day doesn't actually help Autistic people

First some history from Wikipedia:

"World Autism Awareness Day has been held every year since 9 September 1989. It was designated by the United Nations General Assembly resolution "62/139. World Autism Awareness Day," adopted on 18 December 2007, proposed by Qatar, and supported by all member states.[1][2][3][4] The resolution had four main components:

the establishment of 2 April as WAAD
participation of UN organizations, member states, NGOs and all private & public organizations in WAAD
raise awareness of autism on all levels in society
to ask the UN Secretary-General to deliver this message to member states and all other UN organs.[3]

I suppose in 1989 a World Autism Awareness Day may have been useful in some ways. After all, at that time the diagnosis of Autism had only been available for about 40 years, and Autism was not something most people knew about. In fact, in the 1840's Donald Gray Triplett, now in his early 80's was the first person ever diagnosed Autistic. Although I can't speak on his behalf, I'm pretty sure that World Autism Awareness makes no difference to Donald in his every day life.

I can, however, tell you with all certainty that World Autism Awareness Day does not help my children. It does not stop students at my sons school calling him stupid when he has to seek clarification on work tasks because he didn't understand the way the teacher communicated.

World Autism Awareness Day does nothing to stop students at my sons school calling him rude when he tries to assertively explain his viewpoint in his sometimes monotone voice.

World Autism Awareness Day does not prevent people from staring at my daughter if she has a sensory overload triggered meltdown in a public place and making snide comments about her needing a good spanking.

World Autism Awareness Day doesn't stop a mother in my community referring to my children as c*#^s who have behaviour problems because of my parenting and insisting they can't be Autistic.

Those kind of situations can not be helped by awareness.

I would actually argue that awareness can in some instances can hurt my kids. Like when students at my sons school say to each other- "don't do that, it makes you look Autisitc". I'm not going to break down for you how many ways saying something like that is wrong (mostly because, to be completely honest, I can't stand the thought that you might have been reading my blog for a while and still not know why that statement is so offensive). But I will say that hearing his neurology referred to as an insult breaks my son just a little bit more each time it happens.

There are others who agree with me. They are Autistic adults. When I asked them if World Autism Awareness Day helps them they said:

Kassiane- "yeah it helps me by making the world more aware that I don't exist, but would if I was a 6 year old white boy. And then when it finds out I do exist it reacts in a way that's a really awful amalgamation of insisting on denying my existence and acting on every awful hyperbolic stereotype, thus resulting in me being invisible except when people are wiping their asses with me.

Oh wait that's the opposite of helping."

Lei- "Awareness does not help me. I am aware of a great many things, but that does not mean I understand or accept them. Almost everyone I've ever met is "aware" of autism. That doesn't mean they accept me, or think it's okay to be like me. It just means they recognize my existence. That just seems weird to have a day set aside to say "Yay! You exist" and nothing else. I don't think it helps anyone to be tolerated once a year. I do plan on "celebrating" that day by reframing it as Acceptance Day and using it to open the library and hopefully, to change some minds about autism, acceptance and the value of human diversity."

Accpetance on the other hand...... true acceptance of Neurodiverstiy..... true acceptance of the idea that everyone is valuable just as they are and has something of worth to offer even if they are part of a minority group..... that would help my kids and my friends.

Acceptance of difference would stop students making value judgements on people needing communication clarified. 

Accpetance would make it inappropriate to make jokes and form insults based on someones perceived differences. 

Acceptance of things we see but don't always understand would mean I and my children would not be subject to criticism and hurtful comments when things get hard for us in public.

Acceptance is the only way my kids are going to grow up and not have to face the societally induced struggles my Autistic friends have faced in their life times.

And let's face it, no one wants to know their kids are going to grow up having to fight every day to be deemed worthy by their peers just because they process information differently and need more support than most people do.

No one wants to know their kids are going to be the butt of jokes and snide remarks because their voice doesn't have the same range of intonation as other people.

No one wants to know their kids are going to grow up knowing that one day a year they are celebrated but the rest of the year they are going to have to "tough it out", "suck it up" and "just do what you can not to draw attention to yourself and you'll do fine".

No one wants that for their children.

So World Autism Awareness Day does not help my children. Or my friends.

I am asking you to please help me spread the word that what Autistic people need is ACCEPTANCE not awareness.

I will not "Light it up blue"

It must be nearly April, because my news feed is littered with calls for people to "Light it up blue for Autism Awareness". 



To be honest, it makes me cringe. 



There is heaps of "Autism Awareness" going around. It's what causes students at my kids school to "joke" and "tease" by saying things like.... 'don't do that, it makes you look Autistic'. 



No. My kids don't need #AutismAwareness- they need #AutismAcceptance. 



Accpetance is different than awareness. Acceptance means that everyone is worthwhile, no-ones neurology is made fun of, and everyone gets the support they need without having to fight legislators to provide it. 



This April I'll be advocating for Acceptance. I won't be supporting the Autism Speaks driven light it up blue campaign that raises them money to research to find a cure. 

I won't be buying a Build-a-bear blue bear so they can give money to Autism Speaks or Autism Awareness Australia either. 


Here in Australia, many people have heard of Autism Speaks, but feel we are removed from their influence and do not need to weigh in on the stand against them. 



I disagree. For two reasons.



1. I do not want AS to assume that because Australians are not speaking up against them that they are welcome here.



2. We already have our own Autism Speaks here, in the form of Autism Awareness Australia. 



Australians, please do not be fooled into thinking that we are safe from the Autism Speaks message here. 

You only need to watch Autism Awareness Australia's awareness video to hear it....

.

.... use of pathologising language ("complex neurological disorder", comparing Autism to aids, diabetes and cancer,etc) 



..... the "Autism is a tragedy" dialogue ("...improve the lives of families with Autism", "Autism is stealing the minds and personalities of a generation of Australian children", "30,000 Aussie kids have been kidnapped, by Autism", "don't let Autism have the last say in a families life")



Image is of a young Autistic girl with blond hair wearing a hat and smiling.
The background is purple, and text reads
I need your ACCEPTANCE much more than I need "Autism Awareness"

I will not support an organisation that sends out the exact same message Autism Speaks does. 



I will not support an organisation that tells my family, friends and colleagues that my life is difficult because of my children and that their lives are hopeless unless people donate money to save them.



I will not change my mind about supporting Autism Awareness Australia until this message from them changes. Not even if you point out that they are doing a few good things along the way. The harm their message does to my children is real. The damage their message causes to the possibility people will accept my children as valuable the way they are is immeasurable.

And this..... THIS ..... is why the "Autism as tragedy" message of Autism Speaks and Autism Awareness Australia is so damaging..... because it leads to this:



"When I am open about being Autistic, I am handing people a weapon to punish me with. This was not the first time that my autism has been invoked during a disagreement. I have ended up leaving so many communities because I was told that I was only disagreeing because my autism meant I didn’t really understand. I have been told I am having an unreasonable meltdown when I am calm and polite but the other person is agitated and using curse words. Anytime someone wants to dismiss my opinion or experience, they point out that I am Autistic, as if that trumps anything and everything. They remind everyone that I am not reliable, that my word means nothing, that I don’t understand anything.



"Telling people that I am Autistic gives them the opportunity to understand me better. It also gives them the opportunity to dismiss anything and everything about me as irrelevant, deluded, pathological, unacceptable. No one has to provide a logical counter for anything I say because my words are Autistic words so they mean nothing. They are merely symptoms and can be disregarded." 


     Sparrow, from Unstrange Mind. 



Is this what you want for your children? 



Really think about it- how would you feel if we took a month of the year to promote that everyone be aware of you and the fact you need fixing???? 

No? 



Then let's change the message. 



My kids don't need curing. They don't need fixing. They don't need changing. 



It is society that needs to change, and Acceptance of all is the key.


Note: this article has been republished at The Huffington Post. Click here to view.