Wednesday, August 13, 2014

Autism Speaks "Sounding the Alarm" Silences Autistic Voices

Sometimes I feel so excited about new books on Autism or new documentaries...I wait in hope that they will give some accurate information. Sometimes I am rewarded but most times I am left disappointed. I have written about the fact that Autism Speaks does not Speak for Autistics. This post by another writer also aptly describes why:   Unfortunately,  the documentary "Sounding the Alarm" showcased on Netflix. Many people gave it one star and left negative feedback warning others, but shockingly Netflix erased every negative comment about the show on their website.  Isn't it enough that our voices are silenced by the biggest advocacy group that is supposed to HELP Autism? Why must our feedback on the show also be silenced? (See details HERE.)

The best review for this unwatchable film was found HERE.

Highlights of the above article are:

"Throughout the film, the “cost” of Autism is brought up several times.  From Bob Wright lamenting that “you don’t die of autism”, to doctors talking about the millions of dollars we cost, to parents distraught about paying out of pocket for therapies that are not covered by insurance.  There is not one point in this film that talks about the fact that not only do many Autistics find ABA (the therapy they bring up the most) to be dehumanizing and abusive, but also that childhood should not be spent in 8 hours a day of therapy.  Autistic children are children first.  They are not your science project. By far, the most disturbing part of the film for me was the filming of Autistic children and young adults in crisis. Shown at their most vulnerable and since all of the parents claimed they were unable to communicate, certainly without their permission."

"I was able to emotionally separate myself until the moment a young man who was Autistic and had Down’s Syndrome was shown, clearly in distress.  His parents and caretakers sat around a table talking about how this young man was unable to communicate. He was communicating right in front of them! They were not listening! It made me so angry for that young man. In an earlier scene, a little boy was asked to give his mother a hug.  He complied.  I guess he didn’t comply enough because she asked him several more times when he was already done.  She later said “We want our child to say ‘I love you’." Um, he just did." 

Excerpt taken from here:

"That is the big problem with Autism Speaks, and with this film.   It’s a film about parents who feel like they were robbed of the child they wanted.  It’s a film about pity, fear and anger and the terrifying consequences of ableism on Autistic lives.  It is not a film about “awareness”.  It is a film about exploitation. I would not suggest that anyone watch this film.  I know many parents have felt that they can watch these documentaries and feel “not alone”.  I just don’t see how you can justify your need for support at the expense of the dignity and humanity of Autistic people.There are ways to find respectful support that don’t demonize and stigmatize our lives. Use those 57 minutes of your life that you’d spend watching this to do something to make the lives of Autistic people better.  Because this film certainly isn’t helping." Excerpt from here:

I can not speak about the film because I did not waste my time watching it but  I trust the autism women's network and I thank them for doing the dirty work so I didn't have to be distressed. Many people ask what is wrong with Autism Speaks. Their basic platform dehumanizes autistics and makes us feel awful. Instead, I would suggest you to help fill that void of misunderstanding with educational links from actual Autistics. 

Please see the side of my blog for more articles under the label Autism/ Aspergers as well as the Musings of An Aspie links on the side. There is strength we can gain from this sorrowful perspective. We can mourn the misinformation, educate instead, love within our little world, and try again.


Anonymous said...

As an educator, I’ve worked with people of all ages who have autism, and I’ve found a lot of resources to help my students along the way. Since you’re clearly passionate about lending your support to this community, I hope you’ll consider adding a few additional resources to one of your pages. The one I mentioned above may be a good fit.
15 Behavior Strategies for Children on the Autism Spectrum ( )
How to Create a Backyard Sanctuary for Kids with Disabilities ( )
For Educators: Strategies for Working With Children With Autism Spectrum Disorder ( )
Helping Asperger’s Teens To Survive and Thrive: 15 Key Steps ( )
Creating a Home Atmosphere of Solitude to Help Cope with Adult Autism ( )
Thanks in advance for sharing, and I hope these make a difference! By the way, this is a topic I write about frequently, so if you’d like me to write something new you can share with your readers, please let me know. Thanks,

Kmarie said...

Hello Kathleen:
Thanks for sharing. I actually Am an adult with autism and my children have varied diagnosis including autism/ aspergers. We have built a life that suits our sensory needs and I hope more families can also do this. These links had some good information in them and anyone who views this page will have access to them:) In general my blog is more based on personal experiences and links to cites that are BY autistics for autistics as I feel those voices are still sadly lacking. The Musings of an Aspie links are especially helpful! Where do you write?
I have worked with many educators, professionals and people on the scale, and it is always refreshing to come across a person who genuinely cares about the well being of Autistics and the community. Thank you for being that person.