Autism Speaks and Signal Boosting

Signal boosting.  I love that phrase, it reminds me of a train yard.  That’s the image that comes to mind when I write those two words.  Signal boosting is when someone else shares a link or another’s writing either on a blog or on some other form of social media.  It’s the single most appreciated and important tool, those of us who are not Autistic, can use to help amplify the words of those we support.

The other day I signal boosted a letter to the sponsors of Autism Speaks from ASAN, Autistic Self Advocacy Network, – you can read that letter ‘here‘, which outlines why they are asking sponsors to reconsider lending their support to Autism Speaks.  I thought it was an excellent letter and as such, I decided to post it on my timeline on Facebook, with the heading, “For all who may be confused as to why so many are asking to boycott organizations that sponsor Autism Speaks, this is a wonderful explanation.”  And that’s when the proverbial shit hit the fan.  I’m not going to derail this post by going into the specifics of the comments I then received because I want to use this time to discuss Autism Speaks and why I object to what they are doing.  Again ASAN’s letter is an excellent point by point summation of exactly this, but I will attempt to give my personal views and why I have come to believe as I do.

Many defenders of Autism Speaks point out all the “good” they have done and continue to do.  They highlight insurance reform, their 100 day tool kit, autism awareness, spending millions of dollars on research, etc and yet, even if every single thing people who support Autism Speaks believe they are doing that is positive and helpful to Autistic people were true, (which I, for one, do not believe) it still does not take away from the fact that Autism Speaks does a great deal that hurts Autistic people and my child.  Autism Speaks uses its power and massive reach to shape how the public views autism and autistic people.  Suzanne Wright’s A Call for Action is a good example of this.  She begins with –

“This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?”

“Went missing” furthers the misconception that our autistic children were once here, and now are gone.  This idea is not helpful to anyone, least of all the parents who are new to a diagnosis and their young children.  Nothing positive, absolutely nothing positive comes from this kind of language, in fact this is exactly the sort of thinking that had my husband and I pursuing all kinds of “cures” not so long ago.  It was this thinking, that my daughter was buried beneath “autism” and that if I could just find a way to release her from its tortured grip, I would have done the noble thing, the right thing for my daughter.  As painful as it all was, as terrified as we were, she would thank us later… this was my thinking.

And yet, none of this helped me find ways to help her communicate.  Once we found a way to help her write and find her “voice” that was when the real miracles began to happen.  Helping my daughter communicate is what she is thanking us for now, not all those so-called “cures” we traumatized her with.  And please know, I mean that word, “traumatized” literally.  You can read more about some of that trauma ‘here‘, ‘here‘ and ‘here‘.

Suzanne Wright continues with increasingly alarmist, even threatening language.

“And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?

“How long before they break?”  Given that several parents have recently attempted and some have succeeded in killing their Autistic children, this language is particularly repugnant.  This is not a call for action, it is a call for fear.  It sets autism up as something to go to war against.  It dismisses the horror of these crimes against their own children as something that is practically inevitable.    It suggests that autism is the reason people would go to such extremes, but nowhere does Autism Speaks suggest it is the public perception, a perception they have had a massive hand in creating, that makes the lives of families and our Autistic children more difficult and yet I can tell you, it  does.  What they are doing, what they are saying is making my daughter’s life harder, not easier.

Those horrible ads (ransom notes) they posted all over New York City in 2007 and then took down because of the public outcry, the videos of parents who speak about their children, while their child is right there, but because their child does not speak it is assumed they cannot understand what others are saying… these are the things people believe, but that I have learned from my non-speaking Autistic friends and my daughter are simply not true.  My daughter understands everything that is said around her and she is not alone.  So many who do not speak have written about this, Ido, Naoki, Amy, Nick, Joey, Barb, Carly, Tito…  too many to ignore or to dismiss as an anomaly.

In one video Autism Speaks produced a few years ago, the mother describes how she thinks about driving off the George Washington Bridge with her Autistic daughter in the back seat, the same daughter who goes over, numerous times, as her mother talks to the camera, to hug her. This video continues to haunt me.  I no longer believe that child did not understand what her mother was saying.  My daughter understood everything we said in front of her, even though at the time she gave no indication she did.  I now know differently.  What must it have been like to be that child, to hear your mother saying to a camera crew that she thinks about killing herself and you and that the only reason she does not is because of her other non autistic child?  What would that be like to be that child?

These ad campaigns, these videos, these words, these “calls” for action DO have a huge impact on what people then think about autism, about Autistic people, about my daughter.   People make assumptions about my daughter’s intellectual capabilities all the time.  If you are curious to read some of what my daughter is writing these days, please click ‘here‘, ‘here‘ and ‘here‘.  None of what she is writing is thanks to anything Autism Speaks has done.  Autism Speaks absolutely impacts my daughter’s life, and they aren’t doing her any favors.  

In the end, it doesn’t matter what good Autism Speaks has accomplished, until they really understand why so many are so angry, as long as they continue to not include Autistic people in any position of power, they will continue to be attacked by the very people they claim to represent.  How long will it take?  What will need to happen before Autism Speaks stops talking and LISTENS to those it keeps insisting it represents.  So many Autistic people are furious. And so am I.  All their power, resources, money could be used to do so much good for Autistic people, they could make such a difference in the lives of so many…

I stand beside my Autistic brothers and sisters and I will signal boost their words at every opportunity I get until they are able to take the microphone away from Autism Speaks and people begin to hear their voices. Their voices are what the public needs to hear, NOT Autism Speaks.

Image of Melanie Yergeau with a sign of a red X over a puzzle piece.  To the left of the image are the words “people not puzzles”

images-1

 

55 responses to “Autism Speaks and Signal Boosting

  1. Your Autistic brothers and sisters (as well as, I would bet, your Autistic daughter) thank you for every bit of support and hope you continue to offer.

  2. I wish my daughter and the very good school my grandson attends would listen to this. I have come to detest the puzzle piece and the blue light. Austic kids are not “blue light” special.(K-Mart)

  3. for those who want to be a part of the solution: please find ways to help us communicate. and of course know we understand everything you are saying. with appreciation and hope, no anomaly b

  4. Excellent, as always. Much appreciated.

  5. Well said. Years ago, I was trained as a paraprofessional in ABA therapy, and never really bought into the idea that non-verbal children could not understand what was being said in front of them. Ironically, I was reprimaned by staff for being ‘non-compliant’ and questioned on why I asked so many questions. The whole experience opened my eyes to the fact that many of the ‘behavior plans’ , ‘therapies’ and ‘awareness’ campaigns are implemented with not much thought behind them, and do little to actually help anyone, especially when it does not include observing/listening to the person who is supposed to be helped by them. I left that line of work many years ago to focus on creating recreational programs that focus on sensory, communucation and social aspects. I’m sharing this article with everyone I can. Thank you for your insights and for continuing to educate people.

  6. Laurie Bernstein

    Thank you for your courage to speak out in such a public way and enduring all the criticism. This information makes me a better parent and advocate for my non-verbal son.

  7. I really hope that with the change of DSM that all of this autism hysteria will help it go away. It makes people freaked out, like their child needs to be “saved” from autism. When in reality, we need to change the mode of thinking. Arianne, thank you for helping do this. Because unfortunately, it has made people think of it has some kind of death sentence. And you are right – Autism Speaks perpetuates that model. And so do those in the medical field. My son, who was speech delayed, all out of sorts until he hit 6 years old, and was seen by his pediatrician recently – who runs autism screening events across the Bay area. Yes, not developmental screening events — but Autism screening. It gets big mileage with posters plastered all over the place. People line up in droves. They move the kids through different professionals in one site and will diagnose on the spot. He says, “Wow, looks like he has recovered nicely.” I said, “From what?” “He said well you know, we’ve seen a lot of kids who were on the spectrum then go off of it by age 6.” I told him, “I don’t think of my son as ‘recovered’.” He’s just [insert name]. Whether he’s labeled autistic or not, I don’t care. I get him the help he needs.” The doctor looked at me as if I was nuts. I said no more. I didn’t even want to get into it with the dr. because I have no patience with those who are making a living off of fear mongering. Another friend of mine from college has a sister who has a daughter (12 years old) similar to your situation. She told me how sad she was about her niece. I met the niece. I didn’t see it. I saw the beauty. I saw hope and potential. I then forwarded your your blog to her. Thank you and God Bless.

  8. I really hope that with the change of DSM that all of this autism hysteria will help it go away. It makes people freaked out, like their child needs to be “saved” from autism. When in reality, we need to change the mode of thinking. Arianne, thank you for helping do this. Because unfortunately, it has made people think of it has some kind of death sentence. And you are right – Autism Speaks perpetuates that model. And so do those in the medical field. My son, who was speech delayed, all out of sorts until he hit 6 years old, and was seen by his pediatrician recently – who runs autism screening events across the Bay area. Yes, not developmental screening events — but Autism screening. It gets big mileage with posters plastered all over the place. People line up in droves. They move the kids through different professionals in one site and will diagnose on the spot. He says, “Wow, looks like he has recovered nicely.” I said, “From what?” “He said well you know, we’ve seen a lot of kids who were on the spectrum then go off of it by age 6.” I told him, “I don’t think of my son as ‘recovered’.” He’s just [insert name]. Whether he’s labeled autistic or not, I don’t care. I get him the help he needs.” The doctor looked at me as if I was nuts. I said no more. I didn’t even want to get into it with the dr. because I have no patience with those who are making a living off of fear mongering. Another friend of mine from college has a sister who has a daughter (12 years old) similar to your situation. She told me how sad she was about her niece. I met the niece. I didn’t see it. I saw the beauty. I saw hope and potential. I then forwarded your your blog to her. Thank you and God Bless.

    • It’s really horrifying to hear that a medical professional is using that kind of language. It shows a deep misunderstanding about the most basic aspect of autism – that it is neurological. We do not “recover” from having a different neurology. Good for you for saying something to that doctor. And I’m flattered you thought to send your friend to my blog. 🙂

      • Agree, and I kind of like our paediatrician for that reason, he checks my sons vitals out, measures stuff, asks questions about his eating and general wellbeing and leaves it at that. Thats his job as a medical professional – health – which is where it should begin and end.

        • Love that! When I took Em to the pediatrician last month the doctor kept asking how much speech therapy Em was getting. I was too tired to argue or explain so I said, “Hey Emma, do you like your communications therapist?” Em nodded and the pediatrician looked completely baffled. 🙂

  9. Thank you for this excellent and much-needed post. I’m signal boosting you on the FB page for Raising a Sensory Smart Child: https://www.facebook.com/pages/Raising-a-Sensory-Smart-Child/103533493306

  10. Autism Speaks excels at fund raising, not spending the funds wisely. Their successor needs to do that as well. Is anyone interested in that task?

    • I would love to see them spend money on researching some of the methods people are using to help their kids communicate. They could train staff, provide all people who do not speak fluently with an AAC device… There is so much good they could do.

  11. Elsie it isn’t in their financial best interests to make the hysteria go away. For all the research they do they stand behind terms like epidemic when an actual real increase cannot be found.

    I am very sick of how much energy handling stress about how Voldemort speaks portrays my reality and that of people I love and care about. If I have the motivation since I would be tempted to start a non-profit called that exactly although I suspect the first item on the agenda of the board would be to tackle issues of the name.

    Being autistic is difficult at times. We don’t need artificial difficulties from false education. Voldemort Speaks leaves out all the joy. I am an adult who still chooses to sometimes go visit friends who have kids. Mostly kids on the spectrum obviously as those are the circles I run in. I’ve gone two days without sleep because of being a bit too loved by a child with autism only for her to rain video cases on my head while shouting Nemo. I laughed and watched Nemo (granted I fell asleep so often that the most recent autistic kid in my life feels he should show it to me again as I failed his Nemo pop quiz) . All of that is missing from their narrative. For sure an adult like me helping parents is a scary notion to Voldemort Speaks.

    What if they had to portray autistic adults as existing. Not just existing but being potentially useful? Being respected by “normal” adults and doing things with autistic kids that no amount of cure oriented therapy will ever pull off? They wouldn’t be Voldemort Speaks. Well they might be if I get around to starting my own charity, But they wouldn’t be the blue group who cashes in on light bulbs, and scarves and catastrophe and.

  12. I am glad to be a part of this network. I am hoping to do more, but networking comes first.

  13. I think a lot of the harm they do is by pressuring families to feel that they are missing out on something… like, “You know, you COULD be raising a NORMAL kid if only autism didn’t steal your child from you!” Being an adult with Aspergers, I always sensed that my mom felt this way about me, even before she knew I had an actual special need. I think they should do more to help families adjust and find joy in what they do have. They should spend more time making sure families have things they need… respite care, health insurance, good educational opportunities for their kids… so that they can function and enjoy the lives they have… instead of telling families that their lives suck because they have a kid with autism!

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  15. I always read your posts and often forget that the “real world” isn’t quite caught up yet. Case in point- we were at an evaluation today for Sophie to find if she is eligible for IBI -a one on one therapy (ABA based). We weren’t going to take it but seeing as it is the only province-funded therapy, the “right thing to do” is to at least go to the meeting to show you “care” about your kid (politics, horrible). Anyway, everything about the meeting- the questionnaire, the set up and the outcome (Sophie isn’t eligible) made me realize how little autism is still understood by the professionals and how foreign the concept of “presuming competence” is. The only thing to do was to write a post about the experience but is it enough?
    We did express that we are sad that the province deems ABA as the only therapy worth paying for and outlined its flaws but other than polite head nods and tense smiles I don’t think we convinced them. Feeling a bit dejected about the stereotyped image of the autistic person today.

  16. Hello Ariane. Thank you for this post. I think people too often give AS a pass based on thinking they have “good intentions,” but I am not seeing it. Not in their tactics and not in what that board member did on your account. It was calculated. That video of the mother saying those things with the child right there — they still don’t get that. They don’t get how wrong that was for the mother, for those making the video, for those who produced, and for those who thought it was okay. It haunts me too, Ariane. So much so because my daughter communicates so very much through touch and hugs and movement. I saw that little girl try so many times to engage her mother, and the mother simply pushing her out of the way so she could talk to the camera. That child was reaching out, communicating, and being ignored by all the AS folks saying they give “autism a voice.”

    What good has any of the research and training programs done when professionals can’t even explain to parents the simple difference between speech, language, and communication. Because a person is non-verbal/sometimes verbal, does not mean he/she doesn’t communicate. Communication does not need speech, and it only relies on language to create a mutual space, but there are other mutual spaces. We need to learn to see, reach out, and recognize early, very early, that autistic people are communicating.

    AS has no intentions of changing its rhetoric; that is what gets them money. And let’s face it, not just money for their research agendas, but for their salaries. Why would they change? Any change at this point, I expect will only be on the surface to try to look good.

    There is research needed — research into ways to communicate that do not rely on speech or even language. That would mean not just the autistic person learning a different way but nonautistic as well. It is like the early days of sign language. The deaf person learning signs without those around also making the effort wouldn’t have an effect. Many of us think in words and we have difficulty understanding that not every one does so automatically — some have to translate thoughts into words. But can there be other ways that don’t rely on language as we know it? Even typing can be difficult for an autistic person because of all the rules of language that don’t really aid in getting the basic thought across. But wouldn’t such research be of more value?

    It means understanding that when an autistic adult or child types or uses words out of grammatical order, it is not a reflection on intelligence or understanding. Our language that we take for granted is a middle man and not a very good one at that. I hope in the future to see more research into authentic communication and not just using the language that is the majority way.

    That would be worthwhile research, I think. Sorry for going on on your page. You have been quite an inspiration. Thank you.

    • Desi, I agree. I would love to see serious research done regarding ways to communicate that do not rely on speech. I’d also love to see PSAs about celebrating differences and educating the public on the social model of disabilities and how we as a society can better accommodate those who have impairments.

  17. Academia doesn’t do that type of research well. Autism Speaks tends to want to advise government rather that act with it to help people on the ground. They think autism is a disease and the research as to its causes in underfunded. They make token efforts to help in a limited way.

    Again, their magic sauce is their ability to part people from their money. Someone needs to recreate that sauce for doing something practical.

    In PA most of the money seems to go toward psychiatrists, social workers, special ed teachers, TSS’s and BSCs. Getting actual numbers would be an interesting start.

    • It would be interesting. It’s also really depressing what is being taught in colleges and graduate schools regarding autism.

      • I’ve been out of the college loop for awhile. One thing to remember is that autism isn’t monolithic, just as cancer isn’t, even though it is often treated that way.

        • “Monolithic”–of one stone… Great word. I was thinking “static” as in a never ending condition… Without any “professional” help many things have changed with me, some I sought to change, and others came synergistically as they were also related to the original problem. I have gotten over, or been healed from many things from mute autism to leukemia (without medical treatment)– my body and the spirit within which gives it life (and therefore not stone) had the wisdom to know what to do and when. I am now thankful that I was born before all this treatment came into vogue, whereas I used to think I was too late in being diagnosed for it to make a difference in my life. There are so many helping programs out there, for autism, for mental illnesses, for people recovering from addiction–and I see them as creating a fascade of “I know how to act now well enough to look like my insides have been changed”. But once they go back out into the world, the fascade crumbles because the proof is in the doing.

          I worked at an equine therapy place for three years, most of our clientele were autistic school aged children. This one little boy I remember had been so programmed on how to appear social, that when I looked through his frenetic actions and words and tried to reach in to calm his inner self, he became even more freaked–maybe because I was not supposed to be able to see him. Is this what school and therapies are telling autistic youth is “normal” and their goal, to become verbal and perpetually putting up a fascade that will not hold up when all is said and done? I don’t know, because I had not dealt with children in a very long time, well actually since my son was about his age.

          I will be taking an Intro to Autism class at University this summer, so I guess I will get to know first hand what their stance is on how to change the autistic!?

      • I would be curious as to what they teach now at my university. It is strange in a way as what I was taught in the late 80s and 90s still seems a solid part of the “good” science on autism. Not a lot has actually changed in terms of replicable provable findings.

        I know one of the worst things I was taught in school and if it were not required I think I would not have battled my stubborn brain on it was that you can essentially ensure your studies show what you want them to to ensure more funding. People with good backgrounds in stats know where to look for the skew but we were assured those were seldom the people who would fund us.

        Questionable ethics and my brain don’t get along. Usually it rebels entirely and say screw this wake me next term. I have been unable to pass classes despite doing the work for it framed differently because my brain doesn’t seem to understand realities. I barely got the grade I needed in the courses of stats I had to take despite using more advanced stats in the work I did for pay at the time. My stats professor did eventually notice this (hard not to as I have a bit of a splinter skill that was very much at play then) and was excited by it but I never did humour him by taking more courses in cooking the books.

  18. so scary the story of the mother talking of suicide about her own child right in front of her. makes me ill, poor dear child and poor mother confused by all of the propaganda. You are truly amazing to continue these posts Ariane, thank you. truly.

    • Desi described it so well in their comment just above… “I saw that little girl try so many times to engage her mother, and the mother simply pushing her out of the way so she could talk to the camera.” It was truly heartbreaking to see the little girl going over again and again to hug her mother. I watched it and thought – she’s trying to console her mother! – I cried while watching it. I cried for that little girl who was trying so hard to get her mother’s attention. Awful. Just awful…

  19. Cinder McDonald

    My daughter is 21 and we’re both autistic. She said earlier, “I prayed this morning. Is it ok that I prayed?” And I said, “Of course, if it feels right to you, then you should do it.” She said, “I realized I don’t say ‘Thank you’ enough, One of the things I thanked God for, was that I had you as a parent. I’m so lucky to have a parent who is accepting, because so many of my friends don’t have that.”

    She makes me proud to be her mom. She is the reason why I stand up to Autism Speaks and all the other bullies.

  20. 2030 or 2040. The children who went through ‘treatments’ and chelations are old enough to report just what difference any of it made.

    By then Autism Speaks will have raised and spent a huge amount of money on research that resulted in…what? Supposing it merely confirms autism as a hereditary condition and you cannot change brain architecture?

    What then, Autism Speaks?

    Tick tick. I think the entire frame of reference of ‘curing’ is going to end up in the bin. Does the concept apply to autism? It is very easy to see things in a black and white way (cure-autism gone-you end up with a neurotypical child).

    Fairyland?

    • Don’t ask them what then as their priority is not any sort of help but prevention. As all good science points to autism being poly-genetic and likely involving other things as well when they lose the battle on screening they will just encourage people to rethink having male babies. (Already happening in cases where people implant embroyos)

      They will never care what the children who went through this or that report because all autistic children vanish when they come of age and are not so cutely exploitable.

      More upsetting to me than their agenda is really how incredibly popular they got while having it. As if people donate blindly.

      Autistics need appropriate help, access to technology, access to support across the life-span. Their families need support and access to qualified caregivers to give them a break, access to actual educational materials and choice about what, if any, treatments they want. It’s so all or nothing most places that alone just suckss.

  21. Pingback: Wright vs Right: Autism $peaks is Completely Wrong | Thirty Days of Autism

  22. I am saddened by autism speaks, because they do fund some good things. I do know how devastating it is however to dehumanize a person whether they are cognizant of this as an organization or not. I am wondering if you have read “How to be a Sister” by Eileen Garvin. She has an autistic older sister. I was VERY offended and heartbroken by her portrayal, a small part of which I read in a local university’s alumni publication. Apparently autistic people are born to make the rest of us suffer. 😦 I was devastated to learn from others who read this drivel that they completely identified with the author, THE “victim”. I really was crushed, and many people couldn’t understand my adamant disdain. I feel sometimes there is no hope in this regard.

    • There are many people who will explain their emotions as something that someone else is doing to them…I grew up in a family of finger-pointers who decided I was the problem and sent me away when I was 11. They went on to travel and have a pretty nice time of it–then visited me in the institutions asking if WE were having fun yet! They actually believed that I mad them suffer–and to this day whenever anything happens, if I am anywhere near, they will again point the finger at me and start recounting all the ways I ruined their life and still am doing things TO THEM! I am now 52 and they are pointing the finger at me to appoint me their caretaker–but they are just testing the waters to see what I say…they are too afraid of me, actually now believe I will abuse them after all they have done to me. (They are greatly influenced by the media, so maybe they saw something on TV?)

      • I am so sad that was your experience Bev! That was/is so wrong. I was so angry reading that completely uncalled for vitriol in that story. So divorced from reality. I have never seen or heard such a mind set, and have no patience for it. 😡

        • Well I can understand it more now that I am older, and have studied the ways of humans! LOL. My mother was apparently on the spectrum, and flipped into psychosis sometime around when I was born…in and out of it for years, she was able to keep up appearances but when she could not control me (which she really literally sees me as an extension of her self), she looked for other ways to contain me. She actually thought that the system had a revolving door so that she could take me out for show and tell, and then just give me back again to them. It was a push-me-pull-um for a good many years. So we can see how some of this came about–and that it may not be anywhere near the norm or applicable to other people’s experiences.

  23. Autism is not a disease or disorder it’s just like you said in one of your old posts, a different neurology.

    • From:
      http://www.dhs.wisconsin.gov/disabilities/physical/definition.htm

      The Americans with Disabilities Act ( ADA) has a three-part definition of disability. Under ADA, an individual with a disability is a person who: (1) has a physical or mental impairment that substantially limits one or more major life activities; OR (2) has a record of such an impairment; OR (3) is regarded as having such an impairment.

      A physical impairment is defined by ADA as “any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine.”

      Neither ADA nor the regulations that implement it list all the diseases or conditions that are covered, because it would be impossible to provide a comprehensive list, given the variety of possible impairments.

  24. Disorder can as neutral a word as difference. I don’t mind it being called a disorder as long as that doesn’t go with the sort of agenda the charity that shall not be named has.

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