4.25.2014

Please Stop Being "Understanding" When Autistic Kids Are Murdered

Robert Robinson. Photo: The StarPhoenix
No, this is not an age-progressed photo of my son Leo. This is a photo of Robert Robinson, a sixteen-year-old autistic teenager who was killed by his mother -- who then killed herself.

I have been too sick at heart to write about Robert's murder until now, because -- once again, and so predictably -- news outlets have framed the story around how hard things were for Robert's mother, how difficult it was for her to take care of him, and thus are perpetuating the awful message that murdering Robert was an understandable act. Once again the implication is that Robert's mother Angie, who could tell people what she was experiencing and could have walked away, was the victim; and that Robert, who relied wholly on Angie to communicate and advocate for him and who had no escape options, was ... his mother's trigger.

I am too distraught to write a full rant, because Leo practically is Robert Robinson, though a few years younger. So let me leave with you with a few critical points to cite when people side with murderers, not their autistic victims:
  • An innocent autistic person was murdered. There is no defending or justifying this action.
  • Loving mothers do not kill their children. If I read another story about a mother who "loved her autistic child so much" and "tried so hard" but then murdered that autistic child, I am going to throw my computer across the room.
  • Lack of services need to be discussed separately. Of course autistic people need more and better services, and so do their families. But lack of services do not justify murder, and reporters need to stop writing stories that make this lazy, dangerous connection.
  • We need to be aware of signs of caregiver fatigue and exhaustion. If parents are nearing the edge, that puts their kids in danger. Please be vigilant if you know a family that is showing signs of stress.
  • Parents approaching crisis can walk away. Even if you believe "no one else can care for my child," it is better for your autistic child to be with someone who will not kill them.
  • Behavior is communication. If an autistic child, teen, or adult is behaving in a way that appears aggressive or violent, there is likely a root issue, such as lack of communication options, illness, boredom, or sensory concerns. Please do everything you can to explore those possibilities.
Please note: Paula Durbin-Westby has put together a list of emergency resources for disabled people in danger, and for caregivers who feel they are nearing a breaking point.

4.22.2014

Lobbying My Congresswoman on Behalf of Autism and Vaccine Policies: If I Can Do It, You Can Too

At Congresswoman Jackie Speier's San Mateo office,
with staffer Samantha Roxas.
It's funny, really, that I've been doing in-person policy advocacy lately. Personality inventories usually recommend I live in a cave by myself, and avoid selling real estate or doing any kind of political lobbying. So the fact that I've been  lobbying on autism and vaccine policies anyhow demonstrates how much I care about both topics.

Which is why I went to Congresswoman Jackie Speier's office today and talked with staffers including Samantha Roxas. Well, not the only reason. Last month, when Shot@Life sent me to talk about global vaccine policies with Senators Boxers and Feinstein's teams, they also sent me to Congresswoman Anna Eshoo's office. Which was a great meeting! Except I live 200 feet inside Rep. Speier's district. So I wanted to have a chance to talk with my own Rep's team.

From my perspective, the meeting went well. I spend my days so deeply involved in autism and vaccine advocacy that it's sometimes hard to calibrate my information firehose appropriately. Fortunately the staffers were interested, and asked good questions.

First we talked about the re-authorization of the Combating Autism Act, which expires in September of this year. The CAA is a matter I view guardedly. It's not that I don't want more government funding to go towards autistic people; I'm just worried about how that funding is allocated. As my concerns align closely with those of the Autistic Self-Advocacy Network (ASAN), so I explained my concerns using the five talking points from ASAN's CAA memorandum:

1) Re-Balance the Autism Research Agenda to Include Research on Effective Services, and Adults

We need to focus on supporting the autistic people who are already here. My son is starting to use assistive technology to communicate, there are many autistic people whose unaddressed sensory needs interfere with daily living, we need better housing, education, employment. The CAA budget is too heavily focused on causation research.

2) Prioritize Funding for Autistic Adults

Most autistic people are not children; most autistic people are adults. And my own autistic son is already a teenager. We need to prioritize supports and resources for the autistic adults who are already here, who have always been here.

3) Transfer primary responsibility for management of the Interagency Autism Coordinating Committee (IACC) from the National Institutes of Health to the Administration on Intellectual and Developmental Disabilities (AIDD) within the Administration for Community Living (ACL)

Another way to focus less on causation research and more on supporting existing autistic people -- make the department administrating the IACC one already focused on the interests of autistic people, rather than one that tends to view autism as a disease and fund causation research.

4) Change the composition of the IACC to require that at least half of the public members be autistic people and to add representation by DOJ, NCD, HUD and other relevant service-oriented federal agencies.

There are more than enough qualified autistic individuals to serve on the IACC. Busting the myth that such individuals are rare, and they myth that individuals who are non-speaking or have multiple disabilities could not effectively serve, were particularly rewarding areas of discussion with Rep. Speier's staffers. (I recommended they review TPGA's current Autism Acceptance Month interview series.)

5) Change the name of the Combating Autism Act to end the use of stigmatizing language. 

Some might dismiss this as quibbling over semantics, but I disagree. Language matters -- it influences thinking and attitudes. I don't want the government to tell people they should combat my son, or my autistic friends. Autistic people themselves don't like the language, either, and have started a #StopCombatingMe social media campaign.




And then the meeting's focus shifted to my other priority, Global Vaccines. I told the staffers that I advocate for vaccines, in part, as penance for the harm the anti-vaccine autism contingent causes with regards to public health, global health, and autistic people like my son. We talked a bit about how it's reasonable to ask questions about vaccines and autism, but how frustrating it is when people won't accept the answer that vaccines do not cause autism. About how hard it is to unscare people who fell for lazy media vaccine-autism fear mongering, and how silly it is for anti-vaccine blowhard Jenny McCarthy to pretend she bears no responsibility for the current outbreaks of vaccine preventable disease.

And we also talked about why our congress should continue to support global vaccine initiatives:

1) It's the right thing to do

A child dies every 20 seconds from vaccine preventable disease. Emphasis on preventable. Vaccines are a low-cost and effective way for the US to continue its tradition of international goodwill and support, in the best way possible -- by helping to save lives.

2) Diseases like Polio are just a plane ride away

Vaccine uptake in our country has been reduced, mostly due to irresponsible stoking of false autism/vaccine concerns. All those unvaccinated kids have no protection against vaccine preventable disease -- as recent measles outbreaks have demonstrated. If we help eliminate vaccine-preventable diseases in other countries, that helps protect American children whose misinformed parents are putting them at risk.

3) It's cost effective

The cost of vaccinations are so, so much less than the cost of treating a person who has a vaccine-preventable disease -- it costs $20 to vaccinate a child against polio, pneumonia, measles, and diarrhea, but can cost $100 to treat a child who contracts those diseases.

The conversation ended with warm affirmatives all 'round and me unable to keep in a "yay!" which I am guessing is not how many congressional staff meetings conclude. Again, I am not a professional lobbyist. But I did feel I made a difference.

Please believe me: if I can lobby, you can, too. Shot@Life has Global Vaccine Advocacy Guidelines, ASAN has guidelines for joining its #StopCombatingMe campaign. You don't have to meet with anyone in person if you don't want to -- you can write, donate, tweet, call, and just plain agitate. So, what are you waiting for?

4.10.2014

Teh Busy: Quick Update, Long List

I swear to you that I am still here. It's just, teh busy, these last two months. So much so that I didn't even put up perfunctory posts in reaction to luminous BlogHer co-founder Lisa Stone mentioning me and this blog on CBS This Morning a few weeks ago. BAD BLOGGER. Maybe I'll talk about that when I give my BlogHer 10x10 talk in July!

Below is all the stuff I've been doing -- writing, interviews, talks, etc. What's not recorded in there is that Iz, now a sophomore in high school, is playing lacrosse and soccer, perseverating just a bit on makeup and bands, and is a better student than I ever was. Leo, seventh grader, is in the middle of a trial period for a dedicated AAC device, we're optimistic, plus he just had his annual IEP which was resoundingly positive -- last year was hard (seizure and other medical issues), this year is good. I don't know if it's puberty or just maturity that's got him in the current One Chill Dude phase, and I'm not taking it for granted, but I'm enjoying that he's so happy overall right now. Mali is still a fort-builder and a mythology lover, as befits a fourth grader. She is still the most fun ever, as anyone who hangs out with her can attest (still a button-pusher as well, though, watch out). We've started watching Adventure Time, which is surreal but quite awesome, and Leo likes it too.

I'll try to write a real entry soon! HONEST.  But here's the list, I'll slap up some photos below it.

April 2014

March 2014
I visited York Minster as well when I was in the UK.
Jonathan Strange and Mr. Norrell had just finished filming onsite!
I interviewed Roy Richard Grinker at the NAS Conference
Transcription is a perennial bugger hurdle, but will publish soon.
Such a thoughtful, articulate, and charming individual.
(Need to transcribe an interview with Ron & Cornelia Suskind too.
And write that Legoland post. Aaaaigh.)
We're headed back to San Diego in two days.
We were just there in February.
We love San Diego.
(And visiting my mom of course.)
My fellow TPGA editrixes really are the best people in the world.
This is from our UCSF talk last month,
and next month we'll be descending on IMFAR!
Love my happy geek crew. xoxox

4.08.2014

My Public Comments for Today's IACC Meeting

I missed watching the live videocast of today's Interagency Autism Coordinating Committee (IACC) meeting because Leo's (really good, details later) annual IEP was held at the same time. But as the IACC meetings are for advising on policy, and as they welcome public input both in person and submitted in writing, I submitted comments to be included in the official public meeting record.

I did this to counter the anti-vaccine autism zealots who would rather put other people's kids at risk from vaccine preventable disease than face the fact that autistic people have always been here. These angry denialist parents tend to mob the proceedings, so as to give their fringe perspectives disproportionate and on-the-record exposure. They need countering.

If you would like to provide reasonable perspectives to balance the belligerent torch-wavers for the IACC's next meeting in July, please send in comments or (even better) ask to give them in person. The meetings take place in Washington D.C. I suspect the IACC members get rather tired of listening to conspiracy theorists, and would like some legitimately helpful input from autistic advocates, parent advocates, and autism professionals.

Here's what I wrote:
Thank you for reading my comments today. My name is Shannon Rosa, and I am the parent of a thirteen-year-old, thoroughly wonderful, autistic young man who does best with 1:1 support. I believe it is the responsibility of all those involved in autism policy to work towards guaranteeing autistic people like my son the support they need to succeed in life, no matter their abilities.

For that reason, I would like to thank the IACC for the positive work it does in advising on autism policy. However, I'd like to speak out about what the IACC can do to help people like my son, and families like ours:

1) Focus on getting supports and resources to autistic people and their families. The CDC's new 1 in 68 numbers for autism prevalence are an excellent opportunity to reinforce the message that autistic people of all abilities have always been part of our society, and that we will all benefit if the proper autism resources are allotted -- whether for housing, employment, respite, education, health care, or therapies.

2) Focus on research that helps the autistic people who are already here. We need to know more about autism and sensory issues, autism and anxiety, autism and co-morbid medical issues, and so on. This should be a higher priority than research into causation.

3) Recognize the agency of autistic people, and include more of them on the IACC itself. I have spent many years working with and learning from autistic adults regarding what my son needs and how he experiences the world. While I support the involvement of parent advocates and autism professionals on the IACC, autistic people themselves should be the majority representation when it comes to advising about autism policy.

4) Finally, stop accommodating pseudoscience. I still keep seeing mentions of vaccine or mercury autism causation theory in the IACC proceedings. Such theories have been debunked repeatedly by legitimate research. Setting aside any time to discuss them is a waste of the IACC's resources, and does not help autistic people.

Thank you for your time,

Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism
For more on what the IACC does, and why it's so important, see my TPGA interview with IACC member Dr. Matthew Carey.
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