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Autism Speaks, But, When Will They Listen?

11/21/2013

6 Comments

 
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I would love to tell you that like my son Ryan, I am a non-conformist, a marches to the beat of my own drum kind of individual, but, alas, I am not. I am more of the follow the crowd, jump on the bandwagon, wear the latest trends (then years later, laugh and hide all photos out of shame and horror, or better yet, embarrass my teenage son with my
trendy fashion choices) kind of girl. I'm not proud that I regularly wore an all black "cat suit" unitard with cut off Levi jeans while proudly flouncing my latest spiral perm curls. No, I'm not proud, but I am AWEnest....AWEnest and somewhat ashamed of my "follow the crowd" persona. Although, I can happily report that my black cat suit unitard is retired (unless, of course you count Spanx), I'm still a jump on the bandwagon kind of girl. As an autism mommy blogger, today I sit blogging in my skinny jeans tucked inside my ski boot looking Uggs (both of which I swore I would never wear) and I feel compelled to jump on yet another bandwagon. A bandwagon worth blogging about. If I let this wagon pass, without adding my two cents (really, my two cents are probably only worth about a half pence, which by the way, England stopped making in 1984 because what the heck can half a penny buy anyway....certainly not an all black unitard or a spiral perm) I would become an outcast among all other autism bloggers. Then I would be all alone in my skinny jeans and Ugg boots waiting for the UPS man, or as I like to call him, My BFF, to deliver my new high heeled sneakers from Zappos (I swear, I will never...I hope).

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The latest band wagon among the autism community has been to gang up and beat the hell out of the beloved puzzle piece that is Autism Speaks. Wow! The puzzle piece was smashed, stomped, tweeted, blogged and flogged last week. Every blogger, advocate, parent or adult living with autism had something to say...and most of it wasn't pretty. The controversy started after Autism Speaks co-founder Suzanne Wright wrote an editorial on the eve of the first ever "Autism Speaks to Washington" Policy and Action Summit in Washington, DC. Silly, rich, Suzanne used words like "monumental health crisis", "national emergency", "despair", and "not living". Wow Suzanne! I had no idea! As I watched Ryan board the school bus this morning smiling from ear to ear with who knows what going through his head, he did not look like he was in "despair". As I joyfully Christmas shopped for Ryan later that afternoon, I sure felt like I was "living" and not just "existing". Had I only read Suzanne's piece earlier, I may have recognized that my life, and my son's life was verging on a "national emergency".

I am fully aware that autism, or ASD, is a "spectrum disorder", I wonder though if Suzanne and the folks at Autism Speaks know this? They certainly must since they chose the puzzle piece symbol to reflect the mystery and complexity of autism as well as to represent the diversity of each individual affected with an ASD. Autism Speaks is the most recognized autism organization, or charity if you will, with lots of money, lots of celebrities, lots of researchers and lots of media in their corner, so how could they not know that people living with an Autism Spectrum Disorder are as unique as every puzzle piece? And that in order to "solve the puzzle", each piece must be regarded equally. With all the information and all the money that is Autism Speaks, I would think that Autism Speaks must be aware that not all children and adults living with autism feel like a "national emergency", that perhaps maybe folks living with autism think Suzanne and her cronies at Autism Speaks are the cause of the "monumental health crisis".

As a mother of a child with an ASD, I am grateful every day that although autism is a piece of Ryan, there are many more pieces to my AWEsome son, and some days, autism is not the mysterious, doesn't fit puzzle piece, it's just an average corner that completes the entire puzzle. I understand this is not the case for all children and their families, for some, autism is the key piece, however, as an organization designed to advocate and help kids who fall on both ends of the autism spectrum and everywhere in between, words need to be chosen wisely Suzanne. Words need to represent all the people, adults and children, that Autism Speaks claim to support, especially when Autism Speaks professes to be "speaking" for those who can't. This "speaking" must feel like a foreign language to Suzanne and her staff since none of the people Autism "Speaks" for can be found on any of the the Autism Speaks Boards or within it's leadership. Perhaps the real missing puzzle piece, is the non-existent voice of those with an ASD in the Autism Speaks organization.
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One of the key puzzle pieces to the Autism Speaks organization was lost last week as a result of Suzanne Wrights' poorly chosen words as well as a history of Autism Speaks blunders. John Elder Robison, Best Selling Author, Autism Consultant and Educator, and adult living with autism, resigned from the Autism Speaks Science and Treatment Boards last week due to the varying differences between his views of what it is like living with an ASD and the beliefs, ideologies and overall mindset of the folks at Autism Speaks http://jerobison.blogspot.com/ . Mr. Robison had hoped to change the views at Autism Speaks by using his own life experiences, his "gifts" as well as his "disabilities" to change the tone of a very controversial organization. It would appear his words fell on deaf ears. Ironic that Autism Speaks is supposedly "speaking" for those with no voice, yet time and time again, they have proven that with all their speaking, they do very little listening.

Mr. Robison concluded that Autism Speaks, although in a position to advocate and speak for children and adults living with autism, clearly is not listening, so he bowed out. What a shame. Maybe Suzanne Wright needs more people living with an ASD on her organization chart. Maybe instead of screwing things up with her horribly misguided words in a march on Washington, Suzanne Wright should have had someone living with an ASD use their own words, their own voice. Perhaps people living with autism can "speak" and regardless of your position on the "Org Chart" Suzanne, maybe you need to listen. Although there are many children and adults living with autism that struggle day in and day out, and this struggle takes a toll on their families, there are just as many people living with autism who don't think they have an "autism situation" or a "problem". People who view their autism as a piece of their big picture, not the mysterious, doesn't quite fit, puzzle piece. I don't know of any other organization that is designed to advocate for a group of people that's misconception of those people is so off-putting that the very people they purport to serve, holds them with such disdain that they create their own group. An Anti-Autism Speaks group, was created by folks living with an ASD so that the true voices of autism can be heard http://autisticadvocacy.org/
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Many higher functioning adults living with an ASD, feel that Autism Speaks spends too much of their millions of dollars (reportedly 44%) on research, and much of these research dollars are not spent on ways to improve the lifestyles of people living with an ASD, but to prevent people with an ASD from existing in the first place. For example, prenatal testing that may reduce a couples chances of having a child with an ASD. This compares to the reportedly 4% of Autism Speaks budget that goes to Family Services to help children, and adults with an ASD that are already here. Some argue that Autism Speaks' goal of "eliminating" autism prays upon parents' fears and stereotypes and that their fundraising tactics enhance these fears with families and the general public. Words like "burden", "despair", "disease" or "defective" do NOT pertain to my son, yet Autism Speaks is "speaking" for him, "speaking" for my family and that is the misconception the public "hears".

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I do not have an ASD. I do not know what it is like to have a "neurological difference" that varies from the majority of folks in the world, so I cannot SPEAK to what living with an ASD is like. As a mother of a son with an ASD, I do HEAR and I do LISTEN...to my son's words...to his feelings....to his heartache....to his joy. While listening, I have never heard Ryan complain that he felt he was just "existing", nor have I heard him utter words like "despair" or wonder if he was part of a "monumental health crisis". Ryan feels like Ryan. A boy who loves video games, music, math, and despises art with every fiber of his being. A boy who loves his mother to the sun and back and is fiercely protective of his little sister. A boy who cries at the thought of his brother, his best friend, leaving for college in a mere two years. A boy who has two parents that love him and believe in him and fight for him. A boy who does not feel like there is a piece to his puzzle that is a mystery. A boy who believes all his pieces complete the picture of who he is, and not one piece has any more importance than the next. A boy who believes that autism is part of his "genes", and that these "genes" make some parts of his life a little tougher, but these autism "genes" have also given him gifts. Gifts that those of us without the mysterious puzzle piece gene, can not begin to fathom.

So yes, even though today, I jumped on the "Wow, Suzanne Wright of Autism Speaks, I can't freaking believe you said that stuff out loud", I am not denouncing Autism Speaks (like they would really care about my half pence anyway) because I think they have done a lot of good in many areas. Autism Speaks has helped enact legislation that forces insurance companies to pay for autism services that were once out of pocket expenses (still have a looooooong way to go on this one, but is has started). Autism Speaks has raised awareness of autism and although some of their tactics have basically sucked, it still has people talking, and talking often leads to understanding and to change. A monumental change that must be forthcoming is that if Autism Speaks continues to "speak" for all individuals living with an ASD, than I hope it shuts up long enough to start listening. Listening to those who are living with an ASD and putting their voices on Autism Speaks' boards and in their leadership. Listening for ways to help gain acceptance and not always touting the awareness of differences for people living with an ASD. Listening to the joys and the successes and not always focusing on the hard ships and the heartaches may be the key to a truce between the autism community and Autism Speaks.

I have one child with an ASD, so I can only speak to my family's experiences. I am in no way diminishing the struggles that many families experience day in and day out with an autistic child, but as an organization designed to support all people living with an ASD, Autism Speaks need to stop speaking and listen. Please, just stop speaking and listen.

Just like any child, my son has had his share of heartaches and successes. Although I may not know the inner workings of Ryan's brain, I think I know his heart better than anyone. Most days Ryan is proud and confident of who he is...the entire picture....not the pieces. Knowing his heart so well, I can assure you that at the age of 12, Ryan couldn't give a da** what Suzanne Wright or anyone else at Autism Speaks thinks about him, writes about him or campaigns about him. However, one day, as a successful, contributing member of society, he will. And I can say with utmost certainty that to read Suzanne Wright's words, to think people believe a part of his puzzle is broken, defective or part of a "monumental health crisis" would hurt and sadden him.

This was one bandwagon I was proud to jump on...for my son. After all the years we have spent telling Ryan that we all have differences and that these differences are what make the world such a unique and great place, to read that the co-founder of an organization created to help Ryan and others living with an ASD, considers people like Ryan a "national emergency" is wrong on so many levels. I never want my son to be ashamed of being exactly who he is...all the pieces of him that make him perfect...that make him, him. So, I hope the folks at Autism Speaks recognize that the real puzzle, the real mystery is why they continue to Speak for people living with an ASD, but rarely take the time to listen to them. Now, that I have jumped off my bandwagon, I must go. I'm pretty sure my UPS BFF just dropped off my new high heeled sneakers from Zappos. Don't worry, if they look as ridiculous as they sound, Ryan will give me his AWEnest opinion and chances are they will be returned on the next UPS truck that cruises through the neighborhood.

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AWEnestly, had I bumped into Suzanne Wright after reading her words of wisdom, I most certainly would have allowed Ryan to use a "different" finger.
6 Comments
Heather
11/21/2013 06:50:57 pm

Kathy Jo, fantastic!

Reply
Linda
11/22/2013 11:10:05 pm

Brovo!

Reply
Tara
11/25/2013 10:55:03 pm

I am so happy for families who area able to stay positive, and for individuals with ASD who are blessed to be able to function and excel, however the majority of us ARE suffering along with our children, and need to bring the need for more supports and services to the attention of those in charge of the funding.
Any attempt to secure necessary monies requires being able to make our point, and this usually means exploiting the worse of the worst so they can see and hear our pain. We certainly would not accomplish this without demonstrating the pain and suffering most of us, or many or us, are living with. We hold up the least affected, most successful ASD individuals as role models and hope - not as a means to beg for the funding that we so desperately need.
Yes, ASD is a Spectrum Complex, so then you know that there are individuals all over that spectrum, many on long waiting lists for the supports and services that they, and their families, need in order to exist. PLEASE do not try to silence any attempts that Autism Speaks makes to try to help us by judging them so harshly. Their efforts are helping my family via the Adult Autism Waiver, and we are one of the lucky families who are no longer on the years-long waiting list. Thank God for organizations like Autism Speaks!
Amen.

Reply
Kate
11/26/2013 11:17:15 am

Hey Tara, I'm so happy that your family is benefiting from the Adult Autism Waiver as I'm aware of the limited services available for adults living with an ASD.

As I stated in my blog post, I know Autism Speaks has made a positive impact in raising awareness, funds and support for autism services. I also stated that I was in no way minimizing the impact autism has on many families. My biggest concern is that Autism Speaks often does not represent all people who fall on the autism spectrum. As you stated in your comment, you see successful ASD individuals as role models and hope. I would just like to see Autism Speaks give "hope" more of a voice in the future.

Wishing you and your family the best.

Reply
Sarah Broady link
12/4/2013 12:28:45 am

Thank for you for bringing balance to both sides of the coin. I addressed Suzanne Wright's blog post in my own response (found here if you'd like to read: http://hopeinautism.blogspot.com/2013/11/a-call-to-hope-response-to-suzanne.html?spref=fb) and I actually attended the Nat'l Summit (it's kind of cool to live so close to the Capitol.) I heard and saw first-hand the kind of good that are being done that no one seems to want to admit about A.S.

I think there are more and more positive mindsets about autism emerging - a lot from parents like myself and you who are striving to see the good in our children, and even Autism Speaks as they are seeking to bring more and more benefits to families living with autism. I am one of those people, though I do NOT by any means share in Wright's personal thoughts. What I mean to say and am taking the long way about getting there is that despite our disagreements with personal feelings about autism even expressed on the national platform of A.S., there is still a way to agree with the good they are doing, recognizing that though they fail in some areas (who is succeeding in EVERY way?), they are succeeding greatly on behalf of our families in many others. It was refreshing to read another mom who is taking joy in her son and the life within him and not completely disowning an organization filled with people who I truly believe really do want the best for our kids (and theirs! - as they are parents themselves) and are making great strides in the right direction. I think little by little, those failures that everyone keeps pointing out will be addressed as the landscape of the autism community are beginning to change from mostly parent-oriented to parent AND autistic individuals themselves. With the prevalence rising over the last 10+ years, I think we're seeing one of the first larger generations of autistic kids emerging into adulthood and able to speak for themselves. I look forward to my son being one of them - who takes great pride in his autism, even though there is much he doesn't understand about it. But to him, it's just who he is!

Anyway, great post; thank you!!

Reply
Ettina Kitten link
7/22/2016 06:30:11 am

"Autism Speaks has raised awareness of autism and although some of their tactics have basically sucked, it still has people talking, and talking often leads to understanding and to change."

That's not a plus in my opinion. As an autistic person, I have a *far* better time interacting with people who've never heard of autism than people who have an Autism Speaks mindset. Even if it meant me going undiagnosed - getting the diagnosis has helped tremendously, but I'm very glad I was 15 and a strong self-advocate when it happened. I shudder to think of how my schools would have treated me if they knew. I'd rather people think I'm weird and defiant instead of a tragic public health crisis. As it is, I got to grow up seeing myself as a gifted creative kid who no one understood, not some blight on my family who makes my mother contemplate suicide. (Have you seen the Autism Every Day video? That was my introduction to Autism Speaks.)
Think of it this way - if you were Jewish, would you rather deal with someone who'd never heard of Judaism, or a Neo-Nazi?

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