The Mayor of Jerusalem made some remarks during the opening of the icare4autism conference yesterday morning. The organization intends to have a home in Jerusalem and while they seem to be doing a great many wonderful things, there are a few things that are not so wonderful. The following is a letter I wrote and sent to the Mayor’s spokesperson yesterday.
“Dear Mr. Mayor,
I am a writer and a mother of an Autistic child. I am writing a piece I intend to submit to the Huffington Post about the Icare4Autism conference and Jerusalem’s involvement.
I am in regular contact with a number of adult Autistics, both verbal and nonverbal, who are deeply concerned with the amount of press (almost all negative) that autism receives. The autism = tragedy model is one they vehemently object to as well as the fact that they are rarely included or invited to be on the boards, advisory committees or consulted when organizations are formed or policy is made about them. I am hoping both you and Icare4Autism will consider their concerns and am interested to know what you are planning for the future in this regard.
Will you consider including autistic people as advisors, at the very least, who can help in creating better awareness and understanding not just in Jerusalem, but in the world? You, Jerusalem, Israel and your association with icare4autism have the unique opportunity to do something none have done to date – work with and help develop an organization that changes the public perception of autism by including Autistic people. But this will require more than just one or two token Autistics, it will mean truly giving Autistics the opportunity to be a part of the development of policy and organizations meant to help them. Autism is not a tragedy, however public perception of it is.
Autism is a neurological difference from that of a neuromajority. Suggesting cures, promoting imagery that is depressing with melancholy music, showing Autistics as burdens who are broken is something that in the US is sadly the norm. The single largest Autism organization in the US is Autism Speaks, an organization that is abhorred by a massive number of Autistics. The prevailing perception of autism as tragic and a devastating crisis creates more misunderstanding, panic and fear. To be Autistic, to feel that your very existence is in jeopardy because of organizations intent on “cures” only increases that fear. None of us make good decisions or behave well when fearful.
I hope that you will consider the Autistic adults who are speaking out, who are asking to be heard, respected and given a say in organizations which use the word “autism” as part of their identity.
I would love to include a quote from you on any of this.
Thank you so much.
All my best to you and your vision for Jerusalem and autism,
I am going to meet with the head of the icare4autism organization this morning and will speak with him about these concerns as well. Keep your fingers crossed and wish me luck!
The photograph below is of the Autistic Boys Choir. They performed yesterday at the opening. People were openly weeping. The performance was terrific, their voices exquisite, the joy infectious and a wonderful example of what “Autism looks like.”
The moon over the Old City last night
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Great letter!! Something occurred to me when I read the sentence, “Autism is not a tragedy, however public perception of it is”. This is really a double tragedy, a tragedy on two levels so to speak.
First, it is tragic because it is such a misperception that autism is a tragedy at all. There are parents who think of their children as tragedies. There are teachers who think there is only one right way to learn, and only one correct way to solve problems, math for example. Some autistic kids (I was one of them) could solve certain types of math problems much more quickly and very accurately in ways that were never taught in text books, and there was no way I could explain it or show my work on paper. But I was always right. Some people think that social awkwardness is the same thing as stupidity, even though autistics overall are more intelligent than the average human being.
But the misperceptions about autism are tragic on more than just an individual level. It is also tragic on a societal level. Employers might pass up highly productive workers because they seemed strange during the interview process, or perhaps because the person openly admitted that they were autistic. Societies’ obsession with drugging everybody who does not fall within the narrow boundaries of normalcy causes side effects, brain damage, stigma, health problems and drug dependence that create a huge burden on the entire society. Ritalin, for example, has been partly blamed for the current generation of meth addicts. Ritalin is a stimulant, it is habit forming and is used as a recreation drug. About 20 years ago, my wife at the time was a teacher around the time kids first started taking Ritalin. She said a lot of the kids sold their Ritalin pills to other kids for their lunch money. So it also taught some kids about drug dealing at a young age. All because of misperceptions about neurodiversity.
Autism is a wonderful thing (in my opinion). The misperceptions about it and outright lies told about it are the real tragedy.
Thank you so much for this wonderful comment. I always love hearing from you. Yes, public perception is a massive problem when it comes to autism. It can feel very discouraging, or at least it has to me. But today I am hopeful as I just spoke with the creator and president of icare4autism. Not only was he receptive to all I said, he promised me the unfortunate video they showed at the dinner would never be shown again, he told me he would reach out to the Autistic adults I mentioned, some of whom are nonverbal. He promised me he would be in touch. So we will see. Who knows? But the idea that perhaps a large organization such as icare4autism is willing to hear these ideas is at least a beginning!
I don’t get it. I seriously don’t get it. What is an autism organization’s hesitation to having people with autism in active leadership positions? Is it the same thinking we encountered with some educators – that the school system didn’t exist so much to support the kids as it did to support, quite literally, the adults (administrators, teachers, etc)?
When you ask this question of autism groups, what is the answer?
Good grief, when are we going to leave the helpless, hopeless, hapless person with autism notion behind?
Ugh. Just plain, ugh.
It’s a good question, Charlotte. Clearly our work is cut out for us. BUT and it’s a big “but,” this organization, unlike others, really does seem intent on doing things differently. We shall see! It is imperative ALL of us keep blogging, keep talking, keep telling our various stories, because that is the only way things will change.
This was my immediate response as well: what are these orgs afraid of, or hesitant about, to include autistic adults and autistic young adults? Is it the funding? Is it the branding (I have a feeling, it’s about the branding, and therefore, the business of the organization relative to funding)? Is it our “general social consciousness” to become more active in the wake of a tragedy but not that interested in “everyday triumphs”?
I think what we see is part of a larger ripple effect in our society. Media and tabloid frenzy have become “the new norm” compared with how we receive and process human stories even 50 years ago. Everything and everyone has become spectacle-ized. Otherwise it’s “too boring” and people yawn and move to the next spectacle.
Keeping autism a spectacle has become a way of business, a strategy to galvanize funding and activism. Making autism a disease model allows organizations to tap into fear and sense of urgency — “we must do something now! Millions of lives are at stake! Countless children harmed!” Autistic adults leading vibrant and rich lives? Well — that’s not supportive of the fundraising brand.
Yes I think that’s true. Nothing like fear and a feeling of helplessness to get people to pull out their checkbooks. But from what I gathered today speaking with Joshua Weinstein who created icare4autism, they are interested in doing something different, which is really wonderful and refreshing to hear. Let’s see if they follow through with their assurances. They have a unique opportunity, as a relatively young organization, to show the world that this fear based model is a dated one and people will respond positively to a message that inspires real hope by giving Autistics the platform they need to show the world what “autism” really means.
I am only a reader of this blog with no known connection to the community of autists other than deep admiration for Emma and Ariane and their family. But this letter to Jerusalem’s Mayor, Peyton’s extraordinary writing of yesterday, the writer who spoke of his gift in math today — yes, we “neurotypicals” may be the ones living tepid lives. I am just overwhelmed to glimpse the possibilities that these posts reveal.
Aw Barli! So wonderful to hear from you. Thank you for your ongoing support and encouragement. Sending you love!
To Ariane: I am overwhelmed by your inspiring letter to the Mayor. All I can say is: BRAVO! And GO FOR IT!
And to Barli: you are part of my family, and of the family of Autistics, and you bring music, literally and symbolically, to all of us. Thank you!
Thank you Mom for cheering me on! I did, I have to admit, pause before hitting the ‘send’ button, and then thought – What do I have to lose?
We will see, though I have not heard anything from the Mayor’s office yet. It will be interesting to read, if and when I do, his response!
So happy he was receptive and so grateful for you and your ability to write so beautifully!
Thank you so much Becky!
Spectacular Ariane! This is how change is made… not by wishing or hoping but by pressing that send button! Wonderful!
I’ve been thinking of you a great deal while out here. Will send you an email when we’re back in the states. Have a couple of thoughts..
I could hardly get past the referral of her “autistic child” …haven’t you heard of “child first language”? A person should NEVER be referred to as autistic, but instead as a “child with autism” – the disability should not define the person. He or she is many more things besides autistic.
I appreciate your comment as this is a topic that many find extremely upsetting not just parents, but Autistics as well for very different reasons.
Within the Autistic community there are a great many who speak out AGAINST “child first language.” I am providing you with a couple of links, which I hope you’ll take the time to read. http://autistichoya.blogspot.co.il/2011/08/significance-of-semantics-person-first.html
I do not want to inundate you with links, but there are a great many if you’re interesting in understanding the other side to this argument. I grappled with the language used for a long time, but in the end decided to defer to what Autistic people prefer. Until my daughter can tell me what SHE prefers I will continue to use the terminology used by Autistics themselves.
Thank you for those links! I appreciate hearing the other side to this sensitive argument. I think it’s important to remember that Autistics, although they face many challenges and uphill battles in their lives, are not ashamed of the fact that they are autistic. One of the articles compared it nicely to calling someone an athlete, or Chinese. I assumed that a person with autism finds offense in being called autistic because it is defining them – how wrong of me to think it’s a bad thing!
On another note – kudos to you for this letter. What a powerful advocate you are!
So glad you read those links. The one you referred to by Lydia, is a terrific one. Her blog is just a great resource in general. Glad you found it helpful. I refer to it often.
I had a nice conversation today with a young man named Thomas. He has autism, his mom runs a beauty shop from home and cuts Marisa’s hair for me. He has expressed interest in starting a blog of some sort (his parents have a huge ASD message board somewhere online) and I told him he absolutely should. I’d love to see him contribute to something like this!
On another note, about the portrayal. I think it’s very important to get people with autism out there, in these programs. But I also think there is a desperation to find a cure that needs to be expressed still. I *do* think autism is tragic. I *do* want desprately for there to be a cure. The rates are doing nothing but going up. No one knows why. An entire generation of children are being affected. However the word needs to get out there so that people open their checkbooks, I’m ok with that.
I truly don’t mean to offend anyone. All I want is for my daughter to live a normal life, someday. As it stands right now, that is never going to happen. I hate to pull out the “high/low” functioning terminology, but there is much less hope for the lower functioning end of the spectrum. ALL these kids need help.
So pleased to hear from you! I understand completely what you’re saying and I think one of the most important issues is this idea of “cure.” No one is saying there is not a need for research, for treatments and interventions. No one is suggesting that children should be left to suffer. I have yet to hear anyone demand that we, as parents, not do everything in our power to help our children. It is the word “cure” that is objected to, not the desire to help mitigate our children’s pain and difficulties.
The word “cure” implies a complete and total eradication of that person’s autism, the very thing a great many Autistics see as their identity. They see their autism as having a great many assets. One of my favorite blogs, Just Stimming by Julia Bascom writes about this – http://juststimming.wordpress.com/2011/04/10/this-is-our-reality/
So when we say we are interested in a cure it implies a desire to exterminate ‘them’ and not surprisingly they object to that.
I’m glad you brought this up Angie, because you are not alone in feeling this way. So many do believe in a cure, insist on using the word instead of being more specific as to the various things they’d like to help their child with and the misunderstandings continue.
As I said before, all I want is for my daughter to live a normal life someday. Whatever word that needs to be used to get her there is fine by me. I don’t care if she’s “cured”, “recovered”, or just plain better. I just hate that this world is a lousy place for someone like her. So yes, what we’re all doing is progress, and we need to keep at it!
By the way, have definetely been reading some of the links you’ve sent me. Especially the above one. Very powerful and am learning so much. Thanks for your “gentle” insistence that I read them! 😉
Yay Angie! Woohoo! *Doing a little happy dance.*
So well written. Arianne, thank you for this.
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