July 2019
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Dear Readers,

Wishing you a very Merry Christmas and a safe and happy 2019!


Julie & Co


Snowy trees

Dear friends,


As the year draws to a close, we’re taking a moment to look back at everything we’ve achieved since January. This has been a year of nonstop advocacy – answering our action alerts, you have written comments on regulations, talked to your elected officials, and constantly gotten the word out on social media about issues impacting our lives. Over the last year, you’ve put a lot of work into making the world a better place, and we’ve been grateful to work alongside you every step of the way. Here are just a few of the ways we’ve made a difference together:

  • During the spring and summer of this year, we organized the #StopTheShock campaign to end torture at the Judge Rotenberg Center. Thanks to your engagement, the FDA was flooded with calls and we were able to deliver over 290,000 signatures calling on them to ban electric shock devices. We are not done advocating on this crucial issue, but thanks to your advocacy, we have begun to see results: this fall, the FDA announced plans to finalize the ban.
  • We worked together to get out the vote by spreading the word, sharing resources, and making sure voters with disabilities got everything we needed to access the polls.
  • We showed the administration that disabled immigrants are welcome here by speaking out against the proposed “public charge” rule. After a successful campaign, the comment period closed with 210,000 submitted comments opposing the discriminatory regulation – which the government must now respond to before it can move forward with the proposed rule.

Even when we’re not reaching out to you to take action, you are part of everything we do at ASAN. We depend on the support of our grassroots to keep our offices open and allow us to run programs and produce resources. Here are some of the ways your donations have helped us support the community this year:

  • We promoted autistic student leadership on college campuses via our 8th annual Autism Campus Inclusion leadership academy.
  • We published an anthology documenting the experiences of people who learned that they are autistic as adults. This book will be a critical resource for many adults who are just coming into our community, letting them know they are not alone.
  • We released an Easy Read toolkit on Employment First policy. This toolkit is part of our ongoing efforts to make policy advocacy accessible to people with intellectual and developmental disabilities.

Together, we are changing the world—and none of it would be possible without you. Here are some ways you can help us do even more in 2019:

Thank you for your hard work, for your activism, and for believing that advocacy is for everyone. With your help, in 2019 we can make sure there is Nothing About Us, Without Us!

Best wishes,

Zoe Gross
Director of Operations
Autistic Self Advocacy Network


There are many benefits to having a fulfilling job – and when we have the supports we need, disabled people can succeed at jobs that pay well and bolster our self-confidence. There are policies in place to help disabled people find and keep good jobs, like Employment First. But there are also policies that have kept us stuck in low-paying jobs away from our communities.


It’s important for self-advocates to understand employment policy and how things could be different—so that we can effectively advocate for an end to policies that hurt us, and for the adoption of policies that help us. That’s why we’re pleased to announce our latest plain language toolkit, Real Work For Real Pay: A Self-Advocate’s Guide to Employment Policy.


This toolkit explains:


  • *What Employment First is
  • *What sheltered workshops are
  • *What the minimum wage is
  • *The law that lets some companies pay disabled workers less than minimum wage
  • *How we can solve problems disabled people have with employment
  • *What work requirements are, and why they are a bad idea for people with disabilities


The Employment toolkit is available in two versions: an Easy Read Edition and a Plain-Text Version. Both versions are written in easy-to-understand language and are screenreader-friendly.

Real Work For Real Pay: A Self-Advocate’s Guide to Employment Policy is the latest entry in ASAN’s ongoing series of accessible toolkits covering important policy issues. These toolkits aim to help people with disabilities become active participants in our democracy. We encourage you to share this toolkit widely so that we can give as many self-advocates as possible the tools we need to advocate for policies that help us get real work for real pay!

Support our work

Red and orange-leafed trees line a path
Dear friends, 


In our last newsletter, we urged you to take action against Brett Kavanaugh’s nomination to the Supreme Court. Together, we have kept that fight going all through September. Earlier this month, we sent a letter to the Senate Judiciary Committee about our grave concerns about Judge Kavanaugh’s nomination to the Supreme Court – specifically, his proven record of supporting the right to strip disabled people of their self-determination and bodily autonomy. Since we sent that letter, many more horrifying elements of Judge Kavanaugh’s past have come to light. Despite this, the Senate Judiciary Committee has voted in favor of moving Judge Kavanaugh’s nomination to the Senate floor for a vote – and that’s exactly where we’ll #StopKavanaugh. 


We also released a statement opposing this Administration’s proposed “Public Charge” regulation, which discriminates against disabled and low-income immigrants and makes pathways to American citizenship contingent upon wealth and the absence of disability. 


Finally, we’ve just announced the first of this year’s gala award recipients: DJ Savarese, writer and co-producer of the documentary Deej. Our annual gala will be held November 15th at The Hamilton in Washington, D.C., and we hope you’ll join us to celebrate self-advocacy, self-advocates, and the continued triumphs made possible by our community. 


Zoe GrossDirector of OperationsAutistic Self Advocacy Network 

2018 ASAN Annual Gala

A bouquet of colorful flowers.

Thursday November 15, 2018
6:00 pm to 9:00 pm

The Hamilton
600 14th Street NW
Washington, DC 20005


Join us for our annual celebration and fundraising event at The Hamilton in Washington, DC. Dinner and dessert will be served and a reception will precede dinner. Proceeds will support our advocacy work and programs for the coming year, and allow us to continue working to empower disabled people across the country.


We’re happy to announce that David James Savarese is receiving the Harriet McBryde Johnson Award for Nonfiction!

Photo by Ali Lapetina for the Open Society Foundations 


DJ is an alternatively communicating autistic poet, essayist, and self-advocate and the writer and co-producer of the documentary Deej, which follows six years of his life from high school to college. Awarded a Peabody for its “inclusive filmmaking,” Deej is a groundbreaking film that demonstrates exactly why access to inclusive, literacy-based classrooms and alternative and augmentative communication (AAC) are vital for autistic people.  

DJ is an alum of ASAN’s Autistic Scholars and Autism Campus Inclusion (ACI) programs. He is currently a Youth Fellow at Open Society Foundations/Human Rights Initiative, where he works to make literacy-based education, communication rights, and inclusive lives available to all. His poetry and essays have been published in multiple journals and books, including his recently published chapbook A Doorknob for the Eye (Unrestricted Interest Press). We look forward to hearing from DJ at our annual gala and hope that you can come celebrate with us!


More honorees and speakers will be announced in the coming weeks.

For more information about gala sponsorship opportunities, contact Jean Winegardner at



As people with disabilities, we know that every right we have is the result of a hard-won fight. Now, Judge Brett Kavanaugh’s nomination to the Supreme Court puts everything we have fought for at risk. We can’t let him turn back the clock on disability rights – call your Senators today and tell them to vote NO on Kavanaugh’s nomination. 


Putting Judge Kavanaugh on the Supreme Court would be a disaster for people with disabilities. Kavanaugh is opposed to the Affordable Care Act, and thinks parts of it might be illegal. If the Supreme Court decides the ACA is illegal, millions of people will lose access to health care – especially people with disabilities and other pre-existing conditions. As a judge, Kavanaugh has a history of denying disabled people’s rights. In 2007, Kavanaugh ruled against 3 women with intellectual disabilities who had been forced to have abortions or other elective surgeries by the city of DC. In this ruling, he said that people with intellectual disabilities do not have the right to have any say at all in what kind of health care they get.


If the Senate votes to confirm Judge Kavanaugh, he will be appointed to the Supreme Court FOR LIFE. His decisions would affect our lives for decades to come, and nothing we do after he is confirmed could change that. We only get one chance to keep Kavanaugh off of the Supreme Court and protect the rights our community has fought so hard for. And with the Senate rushing to start hearings, the time to act is right now.


You know what to do: call your Senators, and tell them to vote NO on Kavanaugh! You can use our script while calling:

My name is [your full name]. I’m a constituent of Senator [Name], and I live in [your town]. I’m calling to ask the Senator to vote NOT to confirm Judge Kavanaugh. Judge Kavanaugh would undermine the Affordable Care Act, and he is a danger to the rights of people with disabilities. In 2007, he ruled that people with intellectual disabilities don’t have a right to a say in their health care. He sided with the DC government, which had forced people to have abortions they didn’t want. People with disabilities like [me/ my family member/ my friends] have a right to health care, and we have a right to make our own choices about what happens to our bodies. Please keep this dangerous man off the Supreme Court.


If you have calling anxiety or use AAC, our factsheet gives you strategies you can use to call your Senators. If you want more information about Judge Kavanaugh, including a plain language explainer, check out this resource page.

Once you’ve finished calling, here are some other steps you can take:

  • *Visit your Senators’ state offices, and let their staff know how Kavanaugh’s confirmation would affect you. This kind of face-to-face meeting really makes a difference. You can find lists of your Senators’ state offices on their websites.
  • *Email or fax your Senators. You can use the same script you did while calling.


If placed on the Supreme Court, Judge Kavanaugh could be the deciding vote in countless cases affecting our lives. This is a risk we cannot afford. For ourselves, for our communities, and for the next generation of disabled people, we have to act now. Call your Senators and tell them to vote NO on Kavanaugh’s nomination.

Support our work

A bouquet of colorful flowers.

Thursday November 15, 2018
6:00 pm to 9:00 pm

The Hamilton
600 14th Street NW
Washington, DC 20005

Join us for our annual celebration and fundraising event our annual celebration and fundraising event at The Hamilton in Washington, DC. Dinner and dessert will be served and a reception will precede dinner. Proceeds will support our advocacy work and programs for the coming year, and allow us to continue working to empower disabled people across the country. 

Honorees and speakers will be announced in the coming weeks. 

For more information about gala sponsorship opportunities, contact Jean Winegardner at

A vast field of red and white poppies on a clear, sunny day
Dear friends,
It’s been a busy few weeks, so let’s get caught up on what we’ve been up to. Last month we had our 7th annual Disability Day of Mourning, with vigils held at 50 sites across 3 countries alongside our livestreamed virtual vigil. The annual vigils are an important part of our community-building work, and we’re grateful to everyone who volunteered to coordinate a local vigil and all those who attended.

All this month, we’re celebrating another important time for our community: Autism Acceptance Month. During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people. You can visit to learn more, and click here to check out some new merch designs we’ve created for this year’s celebration that you can proudly display.

Finally, we still have a job opening for the position of Programs Coordinator here at ASAN. The Programs Coordinator helps make events like the Day of Mourning vigils and Autism Acceptance Month possible, and we actively encourage people of color, people from low-income backgrounds, and people from the LGBTQ community to submit applications to join our growing team.


Zoe Gross
Director of Operations 
Autistic Self Advocacy Network

Image result for quackery

Updated: 29 January 2018


Two dangerous products are currently being peddled as ‘cures’ for autism: 

  • *GcMAF, an unlicensed blood product 
  • *MMS, a bleach banned for human consumption 
Do not use these products in any circumstances. They could be very harmful.

There is no proper scientific evidence of any kind that any products ‘cure’ autism, and these products are dangerous. The Medicines and Healthcare Regulatory Agency say you should not use GcMAF or MMS. The Food Standards Agency have also warned against using MMS. These authorities continue to investigate people selling these products. 


A ‘cure’ for autism?

Autism is a lifelong condition. There is no ‘cure’ and the idea of aiming to ‘cure’ autism is often deeply upsetting for people on the autism spectrum and their families, who see autism as a part of themselves or their loved ones.
Autism can present many challenges but there are many approaches and forms of support that can help transform autistic people’s lives, whether in employment, independent living or a care setting. 
We urge family members looking for support to seek out reliable information before making any decisions about approaches, from trained local professionals, NICE guidance or our own information

The National Institute for Health and Care Excellence (NICE) looks regularly at what support works best for autistic people. Its Quality Standard on autism explains which interventions and therapies are effective and rules out others. You can also find out what approaches we have found helpful during the 50-plus years we’ve been working with autistic people here 


What are we doing to help stop people using these products

For over two years, we have been running a digital advertising campaign so that people who are searching for these products get directed to reliable information. Over 30,000 people have seen these adverts. We think this is the best approach to educating people as only people who have heard of these products see this information. The last thing we want to do is make people who do not know about these products find out about them and use them. 
We have supported journalists researching the sale and use of these products, so that they have proper information about how damaging they are. By working with journalists, we have successfully managed to stop harmful stories about these ‘cures’ making it to national media. 

We are part of the Westminster Commission on Autism, a cross-party, cross-sector group of Parliamentarians, autistic people, parents/carers, charities, academics and health professionals, who are undertaking an inquiry into the issue of fake cures/therapies for autism. 


We have also tried to understand how many people have used or consider using these products. For example, we have reached out to our volunteer-run branches but we have struggled to be sure of the level of demand. Two national media outlets have also struggled to find evidence of people using these chemicals. 


However, our charity is, of course, not in contact with every person on the autism spectrum or their family members in the UK, so we can’t be certain how many people may be considering using these products. We also know how difficult life can be for families who can’t get support and how vulnerable they might be to claims from dubious individuals or companies.

This is why it’s so important that families have access to up-to-date and robust information about support, therapies and interventions and report any concerns they have. If you know someone who is considering any form of this treatment, please send them to this webpage. 
What to do if you’re concerned about a company or claim


If you are concerned about the practice of an individual or company or the claims they’re making in relation to autism and therapies and interventions, please contact the relevant authorities below.


What else can be done?


It’s important to do everything we can to make sure vulnerable autistic people and their families don’t fall for claims made about dubious and/or dangerous autism treatments and ‘cures’. We believe the most effective things are to: Prevent people wanting to use these products

  • So we give the public accurate and evidence-based information about which support, strategies and interventions can help.
  • And we campaign and work with professionals to improve support for autistic people and their families, so they don’t fall into crisis and feel the need for untested therapies and interventions. 

Stop people marketing and selling these products

  • So we tell the police or other authorities if anyone is selling or marketing dangerous products so they can investigate and stop their supply (see below for more information and contacts). 
  • And we work with the Medicines Healthcare and Regulatory Authority to support their investigations. 

Do we need new laws to stop this?

Some campaigners are calling for specific legislation to be introduced to stop the supply, marketing and use of dangerous therapies and interventions – often marketed as ‘treatments’ or even ‘cures’. Our charity shares their concern and agrees that dangerous products should not be sold or distributed. We’re always open to ideas on how to address this, and to adapting our approach (outlined above), but we do not believe that new laws are what is needed. This is because:

There are existing safeguards in place

  • It is illegal to administer a harmful or dangerous product to another individual and people doing this can be prosecuted as criminals and charged with assault. 
  • The UK’s 4 nations – England, Northern Ireland, Scotland and Wales – have their own child protection system and laws to help protect children from abuse. All nations have laws covering situations where a child may be seriously harmed by abuse resulting in a potentially life-threatening injury or a serious and/or likely long-term impairment. This ‘impairment’ could be anything of physical or mental health or physical, intellectual, emotional, social or behavioural development.
  • There are already laws and regulations in place. Authorities governing medicine licensing, food and trading standards have the power to investigate and stop the sale of dangerous products. 
  • We would rather there was more effort on enforcing existing laws than bringing in new ones. This is why we are trying to raise awareness of the dangers of these products so they are understood and that, where appropriate, prosecutions can be pursued by the authorities. We would encourage people again, to raise their concerns (information above) to help make sure this happens. 

Unclear how a new law would help

  • There is very little evidence about the scale and nature of the problem, what any new law would look like, how it would work and whether it would be successful. Without this evidence, we cannot make the case for a new law to any government. 
  • We are unsure about how any new law would be enforced.  For example, these products are available on the internet and, as far as we understand, are often sold as individual ingredients and only become illegal when put together. They also form a ‘moving target’ as charlatans and quacks find other products to sell. 
  • We’re also concerned that legislation would not stop people desperate for any solution from seeking out products which are already unlicensed and sold through ‘unofficial’ channels. 
  • We believe the time, effort and money that would go into creating new legislation would be better and more effectively spent enforcing existing laws and systems. 
  • Given that there are already laws on the sale of dangerous products, we believe the best and quickest way of stopping the sale of these products is to make sure autistic people and their families get the support they need and have access to accurate and robust information about what works. 

How we campaign

There are hundreds of things which we would like change about policy and public attitudes to make the world work better for autistic people and family members. But, our campaign work is funded by donations, so we have to prioritise to make sure we make the most impact. Find out how we decide what to campaign about

Chris Packham Autistic Facts Posters

Fact fan, autistic man and National Autistic Society ambassador, Chris Packham, has put together a few of his favourite facts about autism to help school kids across the UK celebrate World Autism Awareness Week.


Download your free poster


World Autism Awareness Week is from 26 March to 2 April


There are lots of ways to join the celebration and raise vital funds to help some of the 700,000 autistic children and adults in the UK. You could put on a bake sale, hold a onesie non-uniform day or get classes to take on our 7K for the 700,000 challenge. Plus, we’ve got stacks of free learning resources for you, too. Whatever your school does, however small, you’ll be helping to make a huge difference to the lives of autistic people. On their behalf, thank you.


Sign up for your free schools’ fundraising pack

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