When I was little and started to type, I was saying things like “life with autism is insanity”. I didn’t recognize autism as an important part of who I am and I was only repeating what I heard. My parents were supportive of my typing and loved me deeply. But they also were told that I could never be happy as long as I “had” autism. The efforts, “experts” said, from families and advocates, should be towards supporting research to find a cure.
That was a long time ago. At some point in my life, I started thinking for myself and accepting autism as the most important part of my personality. I am autistic and that’s who I am. It wasn’t easy and it was bumpy. But if today I am accepted by a growing number of people, if more people read and value what I write, it is because I accepted myself as I am. And I am a proud autistic woman!
I do not have the advocacy organizations of my younger years to thank for that. Back then, they proclaimed in their names that they would “defeat” and “cure” autism – NOW! They were saying that I had to be defeated, cured from a terrible condition, exterminated. They never paused to think that I, and other autistics, did not really want to be discarded as undesirable. And it is scary when people keep saying that we don’t deserve to be here.
Today things seem to be even worse. Even for me, although I have found my place and my voice. My family and close friends have accepted me as autistic, but the challenges I face are made worse by the negativity Autism Speaks and their followers link with being autistic. Things are worse because those organizations that once wanted to see me gone, today follow the lead of Autism Speaks.
Autism Speaks is a powerful organization, with support of many celebrities and easy media access. I believe most of the celebrities that help making Autism Speaks so recognizable don’t have an understanding of what autism is. They probably want to help and they buy into the picture of despair spread by Autism Speaks.
The same is true for the thousands of people going to “autism walks” and donating money to Autism Speaks. They don’t know, or refuse to acknowledge, that the message they are supporting is that society should fear and segregate their children; they don’t know, or refuse to acknowledge, that all the money raised will not be used to help their children with education, services or accommodations that can make navigate the world a little easier for their children; they don’t know, or refuse to acknowledge, that a lot of the money is used to advertise their children as burdens, as people society should shun, isolate and eventually eliminate.
We, autistics, know this well and, with our allies, have been very vocal about the damages Autism Speaks is doing to our lives and to our future. I keep thinking about my life. Accepting myself was a difficult and long process. My self-esteem was low and I did not have consistent support. People in my life were torn between believing the messages of despair and gloom, and seeing me as a whole person – disabled and different, but not less.
Eventually, we were able to move forward in our process and this is my point: I cannot avoid thinking that it could have been easier, that time would not have been lost and that I could have had many opportunities – now gone – in my life if my family had been offered more support instead of being told I was too defective and that my only chance to be a “real person” was if I could be fixed.
But I am here today, speaking out, despite the predictions of a lesser life. If organizations like Autism Speaks were really thinking about us, they would stop spreading fear of autism and they would start talking to us, the only true experts on autism. They would then help us achieve the goal to cure what really needs to be cured: the false assumptions of what life as an autistic person is, what life with an autistic person is.
And I mean talking to all of us. I for example, am one of the adults Autism Speaks considers helpless and a burden to society. I am said to be a tragedy for my family, although I am not and Autism Speaks cannot tell my family how they should feel about me. I can give the so-called “experts” valuable information about how to better help me with the difficulties I face.
Autism Speaks hurts us when families of newly diagnosed autistic children have their energy drained by the negative messages they get from that organization. The fear and the bleak future is all they get. They start resenting the child in front of them and they start hoping for a “better”, “non-defective” child. They waste their energy trying to fix what is not broken, what is simply different. And the autistic individuals are silenced, with an uneasy feeling that we are disappointing to the people we love, that no matter how much we try, we will never be good enough, ever.
If the messages and information they get come from Autism Speaks, they never see autistics that are happy, accomplished, successful and thriving, as autistics, in our own way; or the families that are not suffering, despairing, afraid of the future or depressed because a child is autistic; they don’t see that, fear replaced by acceptance, no longer makes sense. When more families accept autism, they work for the rights of every autistic. And this is a good goal.
Autism Speaks hurts us when they use all their resources trying to make us look like not good enough for society. We need to fight for acceptance, so that families, allies, educators and policy makers can re-direct their energy to what is uniquely important to each autistic child and adult, so that we can all thrive, in our own pace, in our own way.
No burden, no tragedy, no fear, no despair. Those concepts come from Autism Speaks, an organization that never listened to autistics, and is not interested in listening to us. They don’t have the insight, the expertise and ultimately, the right to direct the conversation about autism. This right belongs to us and we are the only ones who can decide who our allies are, who can speak on our behalf.
Amy Sequenzia is a non-speaking autistic, self-advocate and poet. She blogs for Ollibean (Ollibean.com). Find her on Facebook.
I concur with a lot of what you had to write here. Thank you for sharing.
There is one major item of note that I disagree with. I do not consider autistics (even myself) an expert is “autism” in general. We ARE experts in our very own autism, however. It is so unique as it is a part of personality and that is an individual thing. We cannot be experts in anyone else’s autism and neither can anyone else, even if they went to school for a million years. Only experts in our autism and how it has impacted our lives and our selves.
I do agree that it seems the most problems comes from other people (and their ignorance) far more than from my actual quirks and disabilities associated with my autism. Autism Never Speaks (Unless An Autistic Person is Speaking)… saw that on FB somewhere. Awesome sentiment.
I am with Heather and I <3 this blog post
!!!! …. DUSYA ….
Thanks, Dusya!
Thanks Heather.
I understand what you say. I think we, as a community, are the experts. That’s why we all should be heard. We are unique but at this moment there is one thing we all need and this is acceptance. If we are included in the “big circles” like the media debates, we can then show our unique expertise to fight for our particular needs. Right now very few groups are interested in listening to any of us.
I have NEVER supported AS. Initially, because I couldn’t afford it, having a child with autism is very costly. As time as gone on however, it has been a choice. I believe AS is doing more harm than good and I believe they are a group of liars as well. NO money has ever gone to the families in need of it. I guess a Park Avenue address is very expensive as is the salaries of this “non-profit”. AS can go pound sand!!
I applaud you for this post!! My daughter is non-verbal and we are working on her typing. She’s doing great so far! She will be a first grader this coming year and I got the feeling from her “therapists” (I use the term loosely, in our case) that she wouldn’t be able to do that unless she talked. SO not true. She’s also not potty trained but that hasn’t stopped her either!! I also wanted to add that I hate the videos etc. that portray any child with autism as sad and someone that should be pitied. NO child with disabilities of ANY kind should be pitied. They should be celebrated and loved the exact same as the “normal” children. I was also misunderstanding AS’s message. I had thought they were there to help children like my Kayla and clearly, they aren’t. I tell everyone I know to not support them. So sad that all that money, time, effort, and celebrity are being used to “cure” something that doesn’t need a cure!!! If someone came up to me tomorrow and said “This will fix all your daughter’s issues and make her like all the other children” I’d probably laugh in their face before shutting my door on them. Autism is a part (a big part) of my daughter’s personality and I don’t want that to change at all. God bless you and all our angels!!!
This is such a well-written article on autism from the best perspective there is on the topic – that of an autistic person! When my children were both diagnosed in 2007, I realized immediately that my personal experience did not align with the messages Autism Speaks portrayed to the public. A few quick searches on the Internet clued me in to what an abhorrent organization they truly are. I am thankful that I found the truth early on, but I worry all the time about families who listen to Autism Speaks, believing them to be some kind of authority in the topic of autism. I worry about their children. I worry about what this message will ultimately do in terms of acceptance, anda the human race as a whole. It is speculated that some of the greatest minds of our time have been on the autism spectrum; what happens if Autism Speaks is successful in their attempts to exterminate people with this neurological difference? I think potentials are not just sad, but terrifying. Anyway, thank you for writing this and bringing awareness to autism.
Fabulous article!! Thank you for this perspective and for your voice! My son is 13 and we are working so hard with him to support his positive view of himself. Lots of work to be done to mitigate the damage done by the messages that tell him he is tragedy or and epidemic. I am very excited to be taking him to Arizona TASH Summer conference with me next month as a self-advocate.
Thank you, Amy, for the work you are doing to build a better future for all of us in a world that accepts and celebrates diversity.
Here is a post you might like on reframing autism and tragedy: http://30daysofautism.wordpress.com/2012/04/25/autism-positivity-and-the-motivation-to-reframe-tragedy/
And here is one about H’s decision to attend the conference and his emerging self-advocacy skills: http://30daysofautism.wordpress.com/2012/05/19/autism-self-advocacy-13-year-old-style/
Leah
Wow, thank you for your article. I work with young kids with autism, and it encourages me so much to see adults with autism speaking out since it doesn’t seem like we hear many of these stories.
I haven’t looked into AS much, though I’ve seen a lot of criticism of it online. Some of the criticism I’ve read about was talking about an ad run where parents talked about how hard it was to have a child with autism – which I get, I see a lot of the parents I work with having a hard time. But there’s a huge difference between saying something is difficult and admitting needing extra support and blaming the person with autism and saying that there’s something wrong with them that needs to be fixed.
It’s the same tension I feel at work sometimes, particularly when it comes to trying to get our kids to communicate. Encouraging speech… without putting such pressure on it that they hate it. Refusing to say of a 5 year old “whatever, they won’t speak anyway” but not making it such a big deal that it impacts their self esteem or becomes a problem if they’re non-vocal.
Anyway, what I’m getting at here is that I appreciate hearing stories and opinions from those on the spectrum, at least partially because it gives me insight into how better help and understand the people I work with, particularly when they have trouble communicating, so thank you
I have spoken to the state house in Trenton, and advocated for Special Needs in Washington DC. What I am concerned about is fracturing i have witnessed in the special need community in the last decade. Once, parents stood together, and IDEA was a great protection for their kids. Now. groups are splitting off, demanding that only ONE way be used for anything the kids need. The pendulum swings—and despite the fact that “inclusion” is not the best route for every child, is now stressed, to the detriment of those it will not work for.
Autism Speaks got a lot of publicity—and convinced people to go their way…but I’ve been part of the SN community long enough to say that these kids are NOT broken…are not “less”…and any approach that treats them as if they are diseased is deeply flawed—and damaging in the long run.
If the words spoken by Autism Speaks are the only thing hurting you, you need to consider what your real intentions are. Nobody is obligated to serve you by having your same viewpoint. Society doesn’t shun autistics cause of ads from Autism Speaks. Society messes with them anyway when encountering them, after noticing weaknesses. It doesn’t require an organizations’ message to see that things are bleak for many autistics.
The anti-cure crowd doesn’t speak for me as someone diagnosed on the autism spectrum. Stop interchanging the idea of curing to remove disabilities with eliminating or removing a person. That’s manipulative. This isn’t about attitudes of parents fundamentally. I choose out of awareness of reality, to think I need cure/fixing. I want success for myself as an adult. I want dignity that is lacking with my disability. I want the status that others have. I consider having to live off charity tragic. I’m sick of the humiliation that comes with lacking basic life skills. And thriving shouldn’t come at different paces. That isn’t fair.
Even if Autism Speaks spent all the donations on services, it wouldn’t be enough money, as the money for services, education, etc., needs to be in the billions to cover the lifetimes of autistics. The government could provide that level of money, but they’re imposing austerity. Someone should complain to them.
Billy… how do you define “success” for yourself? And you want the “status” that others have. How can you have “status” of any import if there’s a million-dollar agency out there sharing a message that you don’t deserve your very existence, never mind status?
The dignity thing? That I totally get! And am with you there. If I saw ANY positive thing come from the existence of AS, I wouldn’t be so vocally (or… by type) against AS. Wait… there is one positive thing–people look up “autism” on Google a lot more often now. :/ So I guess, it’d have to be something else to get me to stop not liking them… or wishing they’d change their views, or whatever.
Success is defined at a very personal level. For me, having a husband, children and a career defined success. Being able to manage my money without my money managing me, is success. I’ve reached that level and so to me, I’ve had success. And if society as a whole were not told that I, and others similar to me, were a tragedy, I suspect you’d get the status that the next person gets too.
I would consider success as having some career in which I could make enough money to be economically self-sufficient, as well as having the abilities to do the things I want to do for leisure I guess. Your premise of that million-dollar agency doesn’t make any sense to me. Them saying negative things isn’t preventing anyone from having status. What they say just tells others that there are others out there with serious problems. Don’t blame the messenger. Exposing a problem isn’t the cause of the problem. Being upset that this has to be talked about in a realistic way isn’t the reason many continue to be unfortunate.
I’ll never have any of the kinds of success you have due to my impairments. I only lack status due to the fact that others have functional advantages over me, which inevitably make me dependent on others and put me in subordinate positions, which is due to my neurological shortcomings. Negative awareness campaigns are only alerting others that such problems exist.
I am third year doctoral student in Clinical Psychology and most of my training has taken place in an educational/clinical center for children with ASD. I mainly implement behavioral therapies infused with speech therapies. I also do parent group and individual psychotherapy. For years I have struggled with this concept. Many people oppose the idea of “accepting Autism” and not finding a cure. For me, it took people like you who actually were on the spectrum to voice their opinions on their own self-identity and self-concept and what that meant to them. When I work with my kids, I can now view them as not merely “Autistic” children, but human beings. I see them in a different light, including their unique quirks and personalities. I think that the root of the problem boils down to society fearing the unknown. We have seen this pattern across history with different minorities/groups being marginalized simply because they did not fit a cookie cutter mold of whatever standard was implemented from the majority population. Parents are immediately told that their child is defective and in dire need of a cure. I can see from a psychological standpoint how parents who are bombarded with different opinions at the time of diagnosis can be fearful and afraid and buy into this notion of what Autism Speaks sells. I believe that the message of acceptance and hope is a very powerful one. As a clinician, I believe it is important to provide children with the necessary skills to learn how to communicate and voice their opinions, but changing the very core of who they are is not. Although science argues that a child with Autism cannot accurately read into emotional cues, it still does not excuse society from invalidating who they are. I believe children sense when they are not accepted and respected. I am glad the conversation is changing, I am glad a different type of Autism awareness is on the horizon.
“Although science argues that a child with Autism cannot accurately read into emotional cues, it still does not excuse society from invalidating who they are. I believe children sense when they are not accepted and respected. I am glad the conversation is changing, I am glad a different type of Autism awareness is on the horizon.”
You and I both. There is a theory floating out there, with some science (somewhat flawed from a clinical standpoint but still valid as it stands) that autistics actually do have empathy, almost too much. This too much sensation requires shut-down and that is what is observable that leads clinicians into believing no emotions exist at all or no emotion recognition exists. I hope I explained that well enough for you to get what I’m saying here.