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March 2014



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Archive for March, 2014

Autistic Self Advocacy Network Issues Statement on Latest CDC Autism Prevalence Data


Latest CDC numbers reflect better understanding of autism; racial and gender disparities persist.


Washington, DC — March 27th, 2014 — The Autistic Self Advocacy Network issued the following statement in response to the unveiling of new data on the prevalence of Autism Spectrum Disorders (ASD) by the Centers for Disease Control (CDC) today.


“These numbers are in line with our expectations based on previous studies showing that autistic people represent between 1 and 3% of the population,” said ASAN President Ari Ne’eman. “The CDC numbers show that while we are gradually improving diagnosis and identification of autistic people, significant disparities persist. African-American and Hispanic autistic children continue to go under-diagnosed, as do women and girls on the spectrum.”


According to the latest CDC data, approximately 1 in every 68 children in the United states is on the autism spectrum. However, vast diagnostic disparities exist–boys were 4-5 times more likely to be diagnosed than girls, with a prevalence rate of 1 in 42 for boys compared to a rate of 1 in 189 girls. In addition, girls who received an ASD diagnosis were more likely than boys to have been identified as having an additional disability, implying that less obvious cases were being missed. This data supports previous studies which showed gender disparities in diagnosis to be largely a problem of identification, as opposed to indicative of lower occurrence.


Nor were diagnostic disparities restricted to gender. White children were approximately 30% more likely to be identified with ASD than black children and were almost 50% more likely to be identified with ASD than Hispanic children. Children of color, when diagnosed, were more likely to be identified as having additional disabilities. These alarming disparities indicate that while improvements in diagnosing autism have been made for some populations, considerable efforts are still needed to make diagnosis and services available to all.


“This disparity data highlights the need for serious action to ensure progress in autism diagnosis and services is available to all, regardless of diagnosis or gender,” said ASAN’s Director of Programs, Julia Bascom. She went on to add, “The lack of any data on adults represents a serious gap in CDC’s efforts. When the United Kingdom conducted an adult prevalence study, it found the same rate of autism in adults as children, helping to debunk public hysteria over a so-called ‘autism epidemic’.”


The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, leadership trainings, cross-disability advocacy, and the development of Autistic cultural activities.

Organ transplant donors, recipients want law change

ASAN Unveils Toolkit for Advocates on Ending Discrimination in Organ Transplantation


ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation.


As ASAN found in our 2013 report, when people with intellectual and developmental disabilities need an organ transplant to treat a life-threatening condition, they frequently face barriers to receiving this lifesaving care. Doctors and transplant centers may refuse to approve organ transplants for people with disabilities who might need help in order to follow complicated post-transplant treatment plans. Others may refuse to approve transplants for people with disabilities based on the belief that, when deciding who should receive an organ transplant, people without disabilities should have a higher priority.


ASAN’s toolkit on ending discrimination in organ transplantation provides resources for advocacy both on an individual and a system-wide basis.

  • *The “Know Your Rights” guide provides people with disabilities and their families with information on existing laws and policies that may protect them from discrimination, and information on who to contact if they experience discrimination.
  • *The Guide for Advocates provides information on ways that advocates can help fight organ transplantation discrimination on a wider basis, such as through legislative advocacy and outreach to the medical community.
  • *The Model Legislation on organ transplant discrimination provides an example of effective anti-discrimination legislation that advocates can propose to their state legislatures.
  • *The Guide for Clinicians and Checklist of available supports and services gives doctors and other health professionals concrete advice on how to serve people with disabilities who may need an organ transplant.


ASAN’s toolkit on organ transplantation is the first of four upcoming toolkits for advocates on health care issues facing the disability community. These toolkits were made possible by funding from the Special Hope Foundation.


We hope that you find our toolkit useful and distribute it widely. Please send any concerns, feedback, or comments on how you plan to use the toolkit to ASAN’s Director of Public Policy, Samantha Crane, at scrane@autisticadvocacy.org.


Dear friends,


Nine years ago, Congress passed the Combating Autism Act (CAA), legislation that focused federal autism research and policy activities on creating a world without autistic people. In 2011, Congress re-authorized this deeply flawed legislation, over the objections of self-advocates and our families. Now, with the CAA set to expire this year unless Congress re-authorizes it, we finally have an opportunity to change things.


ASAN is working to try and reform CAA to align its goals with those of the Autistic community. Federal autism legislation should follow the example of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We deserve a bill that’s about supporting Autistic Americans, not combating us. Today, only 1.5% of NIH’s autism research funding goes towards the needs of adults and only 2.4% towards improving the quality of services. By re-allocating more funds to services and adults, we can help empower autistic people and our families.


Unfortunately, the usual suspects are lobbying to re-authorize the Combating Autism Act at all costs, even if changes aren’t made to fix the problems hurting self-advocates and our families. That’s why we’re asking you to join us by signing this action alert, sending a message to your congressional delegation about why we need to reform CAA.


Here’s what you can do:


1) Sign our action alert to contact your Members of Congress and ask them to support reforming the Combating Autism Act to make it about supporting autistic people, not “combating” us. Share our action alert with your friends, family and networks to help us get this message out far and wide.


2) Post on social media about why you believe CAA has to be reformed using the hashtag #StopCombatingMe – this can be a good way to tell your friends and family about our action alert or to tweet or post to the pages of your Members of Congress to let them know why changing the Combating Autism Act is so important.


3) Consider making a donation to support our advocacy work on this and other critical issues. If you can afford it, make a recurring contribution to support our advocacy over the long haul.


With the re-authorization bill set to be introduced within the next few weeks, it’s critical that your Members of Congress hear from you now. Will you help us?


Thank you for your support and, as always, Nothing About Us, Without Us!




Ari Ne’eman


Autistic Self Advocacy Network


Last Saturday, I stood in a park across from the Capitol Building, surrounded by my community, as we read a list of names. I could have sworn time stopped; we read down one poster, and then another, and every time I thought we were done, there were more names. I remember thinking, last year we only needed one poster. 


The list of names was a list of disabled people who were murdered by their parents and caregivers. The youngest person was six months old. We’ve been making this list for three years; every year, more disabled people are murdered by the people they trusted the most, and every year, we find new names from previous years. Even this year, when the list of victims can no longer fit on one poster, we know we missed people. 


How does a community heal from something like this?


As I stood in the park, I took strength in the fact that I was not alone. I was gathered with my community; across the country, 24 other vigils were happening. Disabled people, our loved ones, and our friends and allies stood together, mourned together, and called for justice together. This wasn’t my pain alone–this was our pain. We felt it together, all across the globe, and we could do something about it, together. And that’s the thing. We can do something about it.


It starts simply. It starts with remembering our dead. It starts with mourning, and it starts with saying, this is not okay. You cannot do this to us. It continues with demanding that our murders be prosecuted to the fullest extent of the law, that our victims not be blamed for our own murders, and that our lives as disabled people be fully and equally valued. It requires having blunt conversations about the way our society devalues and disposes of disabled people, and it requires all of us to stand together and demand an end. 


It’s a huge undertaking. It’s overwhelming, and it’s terrifying. And it’s absolutely doable.


My heart aches for the year when we have no new names to add to the list. But I think about the strength and the resilience of my community, and I know: we can get there. We can stop this.


To everyone who came out to the vigils this year: thank you. To everyone who took time out of their lives to organize a vigil: thank you. To everyone who joins us, every time our community loses another life, in saying enough: thank you. There were more vigils this year than there have ever been before, and they were stronger and better organized. So are we. 


We can stop this.


Julia Bascom

Director of Programs

Autistic Self Advocacy Network