Attention Autistics & Fellow Family Members: ABC Wants To Hear From Us Again

I'm not entirely sure what this presentation will turn out like, what the focus will be, and so on. I thought I'd send this along though, hopefully we can ensure that our voices can be heard (once again).

ABC News Seeks Submissions for iCaught: OnCall+ Autism
Thursday, July 3, 2008
By: Carin Yavorcik

Share your stories via video

ABC News is presenting an opportunity for you to share your personal experiences as part of a special hour on Good Morning America Now: "OnCall+ Autism." You can also send a question about autism that may be answered by a top medical expert in the field.

ABC News is looking for video submissions on the following topics:
1) Your thoughts on living with autism or with loved ones with autism
2) Any questions you might have on autism to be answered by our medical
experts

Most digital cameras now have a video function that allows the user to record 30-second to 1-minute videos. Once recorded, you can upload the video to your computer the same way you'd view digital snapshots. ABC News is specifically requesting 15- to 45-second videos.

How to submit:

1) Via cell phone:
Record a 15- to 45-second clip and email it to: icaught@abcnews.go.com

2) Via the web
Click on the red "RESPOND NOW" button

Videos submitted by the end of July may appear on ABC News NOW!

Another Senseless Tragedy...

People who prefer to find blame in vaccines, often look at us who embrace neurodiversity as being unrealistic. We even are accused of not having our children's best interests in mind. First and foremost, after years of studies continue to find no link between vaccines and autism, why is there still a debate? Why is anyone wasting their breath on this? All the money and media mention--for what?

Those who hold onto the hope of a cure for autism and support pouring millions into such research, also look at us in this same light. Let's be brutally honest here: there will never be a true "cure," not in the traditional sense of the word. What will come in the next several years, most likely, is a prenatal screening for well-documented "autism genes" or other markers for autism. Then, just like we've seen with Down Syndrome, pregnant women will be counseled to abort their fetus based on the positive autism test. A secondary "cure" would most likely be a combination of medications and supplements. There will never be a "magic pill" or procedure to "rid" someone of autism.

So, with all of that in mind, these same people continue to attack those on the ND side of things. We are called every name in the book. There is plenty of confusion as to what Neurodiversity means (as well as what Autism awareness should be), and what so many of us are fighting for. For me, and for most of the parents I know, we are fighting for better services for our children. We want programs created and funded now for teen and adult autistics. We demand better teacher training, employer seminars, first-responders' awareness on autism. We see a dire need for better options for autistics and their families: living arrangements, vocational and education programs, and so on. We also desire our children to be accepted by society, and at the very least tolerated in our communities. We want the world to embrace our child, and see all the gifts we see (for all our children, all over the spectrum).

Our concerns stem not only out of the love we have for our children, but from our fears that arise hearing about stories of abuse. Talk about intervention and treatments (that are respectful to autistics), yes. But how can any of us spend another minute blaming vaccines and promising cures, when our children are being abused, neglected, and killed?

Gabriel Poirier was nine years old when he was suffocated to death at his school. The details of his death are horrifying, and we yet to have all of the facts (like, why the teacher thought this was a viable option?). From The Gazette:

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.

When the teacher went to check on him, he was "listless and blue in the face," the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.

"He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent," Gilles Poirier, the boy's father, said today.

The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.

"We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled," Ménard said.

To think of how terrified Gabriel must have been as he gasped for breath, and the pain his parents are feeling--we cannot look the other way. My heart goes out to his family and friends. We must all learn from Gabriel's story, and not let his death be in vain. This is yet another wake-up call: our attitudes toward autism and autistics needs to change. What is it going to take to for all of us, autism parents and society, to come together and ensure such a tragedy never happens again?

In the words of Gabriel's father:

"Things, or action should be taken to prevent this, to never happen again."

For more information on how you can get involved, please visit these sites:

End Abuse of Children in Residential Programs: ACT TODAY!

APRAIS - The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion

CAICA - Coalition Against Institutionalized Child Abuse

High Functioning? Then Shut Up!

That's the message sent loud and clear by nearly every autism organization (in the media spotlight: TACA, Autism Speaks, et al.) these days. They don't care what you were like as a child, what your struggles were, or the issues you face now. If you are able to speak to reporters or blog or live independently or hold down a job, they don't need you. Rather, they'd prefer you just shut up and go away.

Oh, but wait...but they do need you. Sometimes, at least.

A lot of the comments from the ABC piece were, as expected, the same regurgitated message we hear lately. The idea that those with Asperger's (or that are "high/er functioning" as they put it) can't possibly be on the same journey as those with classic autism. Don't listen to them. That's not the autism my child has! Those people have no right to speak for the autism community! And yet, it's amazing who they do want to represent the "autism moms" of the world. It's also interesting to see how these people determine what "high functioning" is and what it isn't. It's also curious to learn their criteria, if they have any, for "Autism Recovery."

This group (typically the anti-vaccine and pro-cure folks) presumes that an individual living with Asperger's has not faced any struggles. That they don't have sensory issues, meltdowns, social or communication issues. Basically, in their eyes, they have no business being on the autism spectrum (hello?!). They apparently have never been bullied, don't have problems at school, have no trouble living independently, and all can easily find jobs. Anyone who knows an Aspie or someone who is (as others would classify as being) "higher functioning," can attest, this is not the case. Not to mention, the now-Aspie adults who were previously diagnosed with classic autism as a child. Unless those individuals can be used to further sell their "cures" and you agree to be exploited, labeled "recovered," they don't want to hear from you.

They treat us parents who find joy in our autistic children in the same manner. We are crazy, foolish, and even sometimes seen as harming our children. Really--harming them by not injecting them and not forcing supplements down their throats. Harming them by not subjecting our children to needless and harmful chelation and a myriad of other "treatments." Harming our kids by letting them know we respect and love them? We parents who are not suffering, we are a major inconvenience for these organizations. The parents and autistics who believe in and promote neurodiversity, are even described as being "radical."

Neurodiversity is about real civil (and human) rights. People all along the spectrum are being abused, discriminated against, and are not given equal protection. Many have to fight (and sometimes lose) in order to get the right to an education, to work, and even to participate in our culture--and that is the entire spectrum.

It's interesting to me--those who are seeking a cure (and are disgusted by acceptance or "neurodiversity"), are very quick to use the "1 in 150" stats, and employ them to make a case that there is indeed an "autism epidemic." Yet, they continually discredit adult autistics. When autistics speak, they are the first people to dispute what is being said.

The "1 in 150" includes the entire spectrum. You can't pick and choose how you interpret that number (the one that points to an "epidemic"). You can't use a certain subset of autistics only when they, as a number or statistic, suit your needs.



I had drafted this last week just following the Neurodiversity segment on TV. I read Joy of Autism last night, where this myth along with others are brought to our attention:

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

These myths really need to be addressed by all of us, and especially by groups like TACA, Autism Speaks, and so forth.

Autistic and Proud

If you missed the piece this morning on Good Morning America, you can find it online here. There were some wonderful moments, both from Ari Ne'eman and Kristina Chew. I was delighted that ABC included the Ransom Notes campaign, and how our community came together and dissolved it. Transcripts from the show are also available on ABCNews.com as well.

Ari Ne'eman said this early on in the interview, when speaking about a cure for autism, and why some parents are upset over this:

"I think that one of the key issues to remember is that anti-cure doesn't mean anti-progress," he said.

That is so important. People hear "acceptance" and they assume ignorance and even laziness. Accepting my child, accepting autism, does not mean I sit around and allow her to struggle through her life. What it means is that first and foremost, I see her and treat her as the unique, beautiful individual she is. I respect her and love her. I have learned so much from her, she is a gift, and I really am lucky. I do all I can to help her, to ensure she has the skills she needs to reach the next step (realizing it may take a long time to get there, and there may be hurdles along the way).

"Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant," Ne'eman said.

Society is very intolerant, we see that time and time again. I have always thought of my home as refuge from the world--and now for my youngest, refuge from a society that can be very cruel. I see it in stranger's eyes when she is having a meltdown in the store (the "can't you control you child?" or "what is wrong with you?" stares and glares). Or the perplexed look on another child or even parent's face if she is struggling to do something (a milestone achieved by children younger than her) or when she is hyper, spinning in circles or making odd vocal noises. You don't realize how judgmental the world is until those moments. I always had such hope for the world, it's easy to become jaded when you are in my shoes. Judge me, that's one thing. But, I never dreamed society would judge a young child. It's disgusting.

Lenny Shaffer, a writer with an autistic son, says of the movement, "You're a handful of noisy people who get a lot of media attention, but you don't represent a broad swath of the autism community."

Ne'eman believes history is on his side.

"I can't think of the civil rights movement throughout history that hasn't been faced with resistance and misunderstanding on the part of its detractors," he said.

I really have to disagree with Mr. Shaffer's perception of the "Neurodiversity" or autism acceptance or autistic pride (or whatever else one may call it) movement. I see our numbers growing each day. I see it most apparent out in the world, with parents of other children in our community. To be honest, most of the parents who I know who feel as I do, they simply go about their day and their life. They aren't seeking media attention or attending rallies. They have no beef with the government or with vaccines or anything else. They focus on helping their child, dealing with the schools, and just with living life with autism. Those who feel it is wrong for us to "accept" autism, they tend to shout louder and love the camera. But, I honestly feel that we are a rather large, and growing, part of the autism community.

"We really try and understand him on his own terms," she said.

That is her advice for parents dealing with a child's autism diagnosis and feeling hopeless.

I couldn't agree more with Kristina. I'm grateful for having (by coincidence and luck I suppose) known a few parents of older autistic children just prior to and around our diagnosis time. They gave very similar advice. There was always a lot of optimism in their message. I have never forgotten their words. My daughter has made tremendous progress, I credit part of that to the fabulous doctors and therapists we have (and knowing she was delayed and needed help before age 1). The other part, and I strongly believe this, is that she has a loving place of acceptance to live in. We do not force her into how we think she should be. We realize she often finds comfort in rocking, flaps when she is excited, and has her own "brand" of play. We understand that eye contact can make her uncomfortable. We do our best to prepare her for social outings, changes in routine, etc. We follow her lead, in many ways. I don't think she would be where she is today, if we focused on changing behaviors or actions that society perceives as odd. She is so connected to us, and each day opens up more to us. We'll be able to help her so much more, because she will know we are trying and that we respect her.

The interview ends with Kristina saying this, a beautiful message that we all should remember:

"Acceptance, to me, is the beginning of hope," Chew said.

I want to thank Ari Ne'eman and Kristina Chew for their wonderful interviews. I truly feel these messages are what will lead to change for our children and for adult autistics. I applaud ABC, along with Deborah Roberts, Michelle Major, and Jonann Brady for doing this piece. I hope it is only the beginning of many more.

TUNE IN!

I'm very much anticipating this one! Will you be watching too? And, really, it should air TUESDAY, June 10!!!!

Tomorrow, Good Morning America will air a segment discussing the neurodiversity movement, featuring comments from myself, Kristina Chew of the Autism Vox blog and Dr. Thomas Insel of the National Institute of Mental Health. Please tune in between 8 AM and 8:30 on ABC. Click here for local listings.



Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

Neurodiversity on Good Morning America?

I ran across this today and wanted to share. I'm awaiting confirmation via email as to whether this is something ABC really is doing.

From "Good Morning America":

Good Morning America is doing a report on autism activism and neurodiversity. As part of the story, we'd like to include a photo montage of those who are a part of the community. If you or anyone you know is a part of this community and would be willing to be shown in the photo montage that would appear on Good Morning America, please send us your photos. The photos will provide a visual example of the diverse group of people behind autism activism celebrating the voices of autistic people. Please send the photos to Michelle.d.major@abc.com Thank you!


Edited to add:
Thank you to Angela and Camille for the confirmation. Bravo to ABC, let's see how it turns out when the cameras actually roll. Updates to follow...