No Stereotypes Here

>Recipes for Autism Hope

Posted on: December 4, 2010

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I’m going to be extremely honest; there are some things about myself I don’t like, and one of them is how I’m still angry and hurt over the Autism Speaks “Autism Every Day” video, especially the parts with Alison Singer.  However, I understand that she’s changed, left Autism Speaks, and started the Autism Science Foundation.  Recognizing this, I am working towards healing the hurt I feel and beginning the process to forgive her.  I hope that one day I’ll be able to fully forgive her, and I am very glad that I’ve made this decision.  

Because really, there needs to be more science-based knowledge about Autism, and I think that the Autism Science Foundation plays a key part in “providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research” and contributing to Autism Awareness. 

They consider strict scientific standards and values to be essential in Autism research.  This is crucial to understanding Autism as it makes as sure as possible that the results are accurate, and better understanding means better approaches and supports in our communities.  Truly, this is one of the best gifts that can be given to families and individuals on the Autism Spectrum.

Currently, ASF is raising funds with Recipes4Hope, and every dollar raised will go towards science-based Autism research dedicated to discovering better ways to recognize Autism and implement better supports and enhance the lives of Autistic persons.

With the hope of a better future for all Autistic persons, I encourage everyone to contribute as you wish, to donate if you can, and to spread the word as far as you can.  

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14 Responses to ">Recipes for Autism Hope"

>You never need to apologize for your feelings. I wish I had the maturity you're showing, though, in realizing when a certain emotion isn't doing you any good.

>Thanks so much for supporting the Recipe4Hope campaign. Let me try to address some of your concerns about what I said in the Autism Every Day video. What I said was an honest reflection of how I felt at the time. When I went to see the schools that the NYS Dept of Health had recommended I was sick to my stomach. It was out love for my daughter that I would never let her be in a place like that. It brought back very difficult memories of when my brother was institutionalized when we were kids. I certainly don't want to kill my daughter. I love my daughter and am incredibly proud of her and of all the progress she has worked so hard to make. I am part of this community because of my love for her. The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did. If I had the film to do over again I would certainly try to make that point more clearly than I did. I did not mean to offend anyone or in any way suggest that Jodie's life (or anyone else’s) was not valued. I am sorry that that is how it came across.–Alison

>@Corina:Yes, I have often some fear when I see people talking about taking a completely scientific approach because while I don't read many things about science (science is not my main interest) I have the sensation according to some "scientifics" texts and pieces of work that many scientists (but maybe that it comes often more from the journalistic interpretation and a tentative to make the material more accessible to non-scoientific people) tends to have some false premises (because these premises are so profundly implemented in the popular consciensness or incontient…) or fail to recognise what comes from social pressures and norms.I remember for example of a post from Lindsay about a scientific study on Autism, even me, not being a scientist, i can see where scientific reasoning fails there: http://autistscorner.blogspot.com/2010/10/whos-that-in-mirror-autism-and.htmland I remember my biology proffessor in school (Collège of Switzerland does not correspond to the years of college in others countries, so I don't know what correspond.) showing us a video, supposedly studying the differences between male and female brain, I feeled very disturbed because it didn't match with what I feel deep inside me, at the time I had no clues how to respond to this… now I have read some texts that makes me see in a better light where were the flaws of this "study" where it failed to recognize how social pressure to "perform2 gender role (and confusion between gender and sex) are here since before the baby is even born!So these were two example of the things that makes me doubt of all the studies with a "scientific" stamp on them.But I suppose that if you can trust this association it's that there are good reasons to believe them and that they succeed in being very careful to the way they proceed in their research, and yes you are right, we need some good scientific research in the field of Autism.

>@Alison:I'll answer to you too as soon as possible, but not right now I have to go to lunch and school.for you to have an idea of the tone:I hate the video (and Autism Speaks) but not you.I can't excuse the video but I can forgive you.

>Hi Alison, thank you for responding personally. I hope that we can continue to talk directly. I'd like to get to know you better, to see you more than just a face and a name. I've known for a while about what you were attempting to communicate through the video, and how you would change things if you could do it again. Knowing that was part of the reason I decided to forgive you. After all, you are not Autism Speaks, and cannot be held responsible for what everyone in Autism Speaks does. So my grudge with Autism Speaks is not a grudge against you, or ASF, although I do have some concerns about ASF, some of which are similar to that of Autism Speaks. I think ASF means well, and so far has been neurodiversity-supportive, so I think these concerns can be easily addressed. There's been some concern about the apparent lack of autistic persons in the decision making, and some concern regarding the quality of studies that ASF has supported. I'm wondering whether there can be a discussion regarding this.

>Alsion, your humility toward attempting to heal the hurt which Corina (and others) feel re: your past comments are a testament of what it means to look for solutions instead of blame. We are all imperfect, right? I am humbled by your attempt to reach out in kind to those of us who are autistic and took particular offense at the way your comment came across. Thank you.Corina, I need not tell you how I feel. You know my affection for you is true and I am more proud of you today than ever as I know how very difficult this has been for you. You are a wonderful soul with a true resolute spirit. The Autism Women's Network is fortunate to have on our team. Like you, AWN is aspiring, reaching out to do good, learning many lessons along the way, and asking to be heard. All of us are on a path of learning and tolerance for humankind, right?Thank you for sharing this post, Corina.

>oops. I'll try to finish my response tomorrow

>Allison: Thank you for responding an being forthright about your comments in the Autism Every Day video. Unfortunately,a lot of us in the autism community, from what I have seen, were shocked and hurt by those comments. I had no idea you'd left Autism Speaks or had formed the ASF. I am REALLY behind. And I do echo Sharon's sentiments: you showed an incredible sense of humility and now I understand the context of that comment you made in the Autism Every Day video. I do not know much about the ASF but will be off to research.Corina: this post speaks volumes about you, the fact that you chose to work to forgive her and also that you are asking for dialog. Thank you for sharing.-Nicole-Nicole

>+1 to what Sharon and Nicole said.Corina, more power to you as you attempt to reach out. It is very hard to do so, to seek common ground, in overly polarized environments, as leaders from Barack Obama to Ehud Barak have found out, in their attempts to do so. (15 years ago, I was more or less flamed off the St. John's University Autism listserv (back then, the biggest autism resource on the Internet), for posting this: http://www.autistics.org/library/pschwarz.html The public discourse about autism has been an overly polarized environment for way way too long.)

>Oh and when I said taht I hated the video, I was talking about the old Autism Sépeaks video, not the "recipe for hope" video from ASF of course.

>@Alison: I know it's late and I don't know if you will read this but, here isn what I wanted to tell you:1.Concerning the "Autism every day" video, even while I was very angry at this video, I didn't considered you the first person resposible of what I hated in the video and the danger it represented to autistics people, I'm on a cinema school and have already worked on a reportage, so I consider very seriously the responsability of the filmakers, the interviewed people are very vulnerable and in an emotionnal condition that makes it difficult to them to know what is good to say or not and how you should say it, and it is the responsability of the director and the editor to make sure that what they keep in the movie will be useful and not dangerous to very vulnerable people in the world.But I am even more angry to the board of directors of Autism Speaks who chose to diffuse this video the way it was and didn't listen to the protest of all the autistics and parents who had good reason to protest.They should have known better and even more important they should have listened.(I don't mean I hate them, but I am very angry at them!)

>@Alison:2.What you said about the instutionalisation of your brother remind me of a friend of my mother, she has lived this too, her parents were convinced by proffessionals to put her brother on an institution and they didn't have many news about what he was becomming, a very painful separation that felt and feel very wrong.I feel pain, imagining… having the only so little idea that I can have of the pain and the distress the friend of my mother and her parents must have felt.And I feel even more about her brother how did he feeled how is he now, in France there are still so many abusive institutions…I don't know when all the "proffessionals" will stop to listen so much to themselves and more to the people they should help.Well some do… but even if I don't know everything about it it seems to me that these are not always the ones who write books and have a chair in univerity.I hope we will achieve the deinstitutionalisation for all soon.I have read on the article to which Corina has linked to that the things are better now for you brother, and I am very pleased to have read that. 🙂

>@Alison:3.and in the article to which Corina has linked, I appreciate very much what you responded when the interviewer asked you what was the first thing you had to say to those who have an autistic sibling, are intersted in autism etc.The fact that at every age you can still evolve and learn things.So many people articles etc. focus so much on "early intervention" and I really don't like the way they do that, It's very dangerous both for the autistics who have passed the age of "early interventions" and with this kink of ideas are at risk of being treated like if they could no more evolve and live and learn (especially the autistics adults) and for the children in the age of "early intervention" because parents and society at large are et risk of being so terrified to the idea that later it will be too late , that they risk to accumulate a lot of prssion on the shoulders of these children and try all method available without taking the time to question them to be sure they are not abusive and to listen to the child's means of comunication, and all tnis at an age where children are very vulnerable.So I really loved what you had to say, and I thank you for it.Thank you very much, I hope you have passed the message and that it will be useful.I may not completely agree with all what you say on the article, but I really agree on this point.

>@Alison:4.And the most important thing I had to tell you:In the AS video, I don't remember all, and don't feel like I want to see it again, but I remember your daughter.her face, the way she looked at things and communicated…I found that she was apparently a very great and beautiful little girl.she marked me positively at least as much as the aspects of the video I don't like marked me negatively, maybe more.I'm happy to learn that she is loved, that her efforts are appreciated and that she grow up surrounded by hope and not despair.Does she has perseverations?, what does she like?, does she stimm?I hope she is happy, and as I'm sure I'm not the only one who saw her the way I saw her in this video, I hope that she knows that there are lots of autistics (and others neuro-atypicals and other disabled and atypical people) who welcome her in the community.Good Luck and good continuation to both of you Alison and Jodie.(p.s. as I am french, I hope my english wasn't too bad and that I have found the right words.)

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