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March 2021





Everyone at ASAN was new to the autistic community at one point. There were times when we felt alone, when we did not understand our disability or know how to communicate our needs. Since then, we’ve learned a lot about the autistic community, neurodiversity, and self-advocacy, and it’s important to us to share that knowledge with others who might just be starting to understand autism. That’s why we made Welcome to the Autistic Community, a revamped resource now available entirely online at autismacceptance.com or as a book here.

The comprehensive new Welcome to the Autistic Community resource covers a variety of subjects all about autism, the autistic community, self-advocacy, and our hard-won rights. It replaces our earlier booklet with the same name, as well as our previous Autism Acceptance Month website — we hope that this new resource will promote autism acceptance all year round! We created Welcome To The Autistic Community for autistic people, especially those who are just finding out that they are autistic. But anyone can use this resource to learn more about autism, self-advocacy, and how to be a good ally to autistic people.

Here’s a sneak peek at what you can find in the new Welcome to the Autistic Community:

  • All About Autism
  • Who Can be Autistic?
  • Autism Facts
  • Autism and Disability
  • Self-Advocacy and the Self-Advocacy Movement
  • Knowing Your Rights
  • Finding And Making Autistic Community
  • Being An Ally

The expanded Welcome to the Autistic Community is available in its entirety at autismacceptance.com, in Plain Language and Extra Space formats. The Extra Space format has more space between lines, as well as shorter paragraphs and sentences, for increased visual and cognitive accessibility. You can also find the new Welcome to the Autistic Community as a book, available here!

There’s lots of great information in the new and improved Welcome to the Autistic Community that we wish we’d been given when we were first learning about ourselves and our place in the community. We’re thrilled to share what we’ve learned with you, and we can’t wait to see what you do with the information. Sharing autistic community and wisdom is really important to us, and we hope that it helps you!Support our work

Date: February 27, 2020 Source: University of Cambridge Summary: Different learning difficulties do not correspond to specific regions of the brain, as previously thought, say researchers. Instead poor connectivity between ‘hubs’ within the brain is much more strongly related to children’s difficulties.

Different learning difficulties do not correspond to specific regions of the brain, as previously thought, say researchers at the University of Cambridge. Instead poor connectivity between ‘hubs’ within the brain is much more strongly related to children’s difficulties.

Between 14-30% of children and adolescents worldwide have learning difficulties severe enough to require additional support. These difficulties are often associated with cognitive and/or behavioural problems. In some cases, children who are struggling at school receive a formal diagnosis of a specific learning difficulty or disability, such as dyslexia, dyscalculia or developmental language disorder, or of a developmental disorder such as attention deficit and hyperactivity disorder (ADHD), dyspraxia, or autism spectrum disorder.

Scientists have struggled to identify specific areas of the brain that might give rise to these difficulties, with studies implicating myriad brain regions. ADHD, for example, has been linked to the anterior cingulate cortex, caudate nucleus, pallidum, striatum, cerebellum, prefrontal cortex, the premotor cortex and most parts of the parietal lobe.

One potential explanation is that each diagnosis differs so much between one individual and the next, that each involves different combinations of brain regions. However, a more provocative explanation has been proposed by a team of scientists at the MRC Cognition and Brain Sciences Unit, University of Cambridge: there are, in fact, no specific brain areas that cause these difficulties.

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Findings may help health care professionals better assess those with autism, schizophrenia

Date: February 18, 2020 Source: University of California – Los Angeles Health Sciences Summary: Researchers have found that it is possible to assess a person’s ability to feel empathy by studying their brain activity while they are resting rather than while they are engaged in specific tasks.

UCLA researchers have found that it is possible to assess a person’s ability to feel empathy by studying their brain activity while they are resting rather than while they are engaged in specific tasks.

Traditionally, empathy is assessed through the use of questionnaires and psychological assessments. The findings of this study offer an alternative to people who may have difficulty filling out questionnaires, such as people with severe mental illness or autism, said senior author Dr. Marco Iacoboni, professor of psychiatry and biobehavioral sciences at the David Geffen School of Medicine at UCLA.

“Assessing empathy is often the hardest in the populations that need it most,” Iacoboni said. “Empathy is a cornerstone of mental health and well-being. It promotes social and cooperative behavior through our concern for others. It also helps us to infer and predict the internal feelings, behavior and intentions of others.”

Iacoboni has long studied empathy in humans. His previous studies have involved testing empathy in people presented with moral dilemmas or watching someone in pain.

For the current study, published in Frontiers in Integrative Neuroscience, researchers recruited 58 male and female participants ages 18 to 35.

Resting brain activity data were collected using functional magnetic resonance imaging, or fMRI, a noninvasive technique for measuring and mapping brain activity through small changes in blood flow. Participants were told to let their minds wander while keeping their eyes still, by looking at a fixation cross on a black screen.

Afterward, the participants completed questionnaires designed to measure empathy. They rated how statements such as “I often have tender, concerned feelings for people less fortunate than me” and “I sometimes try to understand my friends better by imagining how things look from their perspective” described them on a five-point scale from “not well” to “very well.”

Researchers wanted to measure how accurately they could predict the participants’ empathic disposition, characterized as the willingness and ability to understand another’s situation, by analyzing the brain scans.

The predictions were made by looking into resting activity in specific brain networks that earlier studies demonstrated are important for empathy. Researchers used a form of artificial intelligence called machine learning, which can pick up subtle patterns in data that more traditional data analyses might not.

“We found that even when not engaged directly in a task that involves empathy, brain activity within these networks can reveal people’s empathic disposition,” Iacoboni said. “The beauty of the study is that the MRIs helped us predict the results of each participant’s questionnaire.”

The findings could help health care professionals better assess empathy in people with autism or schizophrenia, who may have difficulties filling out questionnaires or expressing emotion.

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A new study may explain why people with autism are often highly sensitive to light and noise

Date: March 2, 2020 Source: Massachusetts Institute of Technology Summary: A study reveals a neural circuit that appears to underlie sensory hypersensitivity in a mouse model of autism, offering a possible strategy for developing new treatments.

Many people with autism spectrum disorders are highly sensitive to light, noise, and other sensory input. A new study in mice reveals a neural circuit that appears to underlie this hypersensitivity, offering a possible strategy for developing new treatments.

MIT and Brown University neuroscientists found that mice lacking a protein called Shank3, which has been previously linked with autism, were more sensitive to a touch on their whiskers than genetically normal mice. These Shank3-deficient mice also had overactive excitatory neurons in a region of the brain called the somatosensory cortex, which the researchers believe accounts for their over-reactivity.

There are currently no treatments for sensory hypersensitivity, but the researchers believe that uncovering the cellular basis of this sensitivity may help scientists to develop potential treatments.

“We hope our studies can point us to the right direction for the next generation of treatment development,” says Guoping Feng, the James W. and Patricia Poitras Professor of Neuroscience at MIT and a member of MIT’s McGovern Institute for Brain Research.

Feng and Christopher Moore, a professor of neuroscience at Brown University, are the senior authors of the paper, which appears today in Nature Neuroscience. McGovern Institute research scientist Qian Chen and Brown postdoc Christopher Deister are the lead authors of the study.

Too much excitation

The Shank3 protein is important for the function of synapses — connections that allow neurons to communicate with each other. Feng has previously shown that mice lacking the Shank3 gene display many traits associated with autism, including avoidance of social interaction, and compulsive, repetitive behavior.

In the new study, Feng and his colleagues set out to study whether these mice also show sensory hypersensitivity. For mice, one of the most important sources of sensory input is the whiskers, which help them to navigate and to maintain their balance, among other functions.

The researchers developed a way to measure the mice’s sensitivity to slight deflections of their whiskers, and then trained the mutant Shank3 mice and normal (“wild-type”) mice to display behaviors that signaled when they felt a touch to their whiskers. They found that mice that were missing Shank3 accurately reported very slight deflections that were not noticed by the normal mice.

“They are very sensitive to weak sensory input, which barely can be detected by wild-type mice,” Feng says. “That is a direct indication that they have sensory over-reactivity.”

Once they had established that the mutant mice experienced sensory hypersensitivity, the researchers set out to analyze the underlying neural activity. To do that, they used an imaging technique that can measure calcium levels, which indicate neural activity, in specific cell types.

They found that when the mice’s whiskers were touched, excitatory neurons in the somatosensory cortex were overactive. This was somewhat surprising because when Shank3 is missing, synaptic activity should drop. That led the researchers to hypothesize that the root of the problem was low levels of Shank3 in the inhibitory neurons that normally turn down the activity of excitatory neurons. Under that hypothesis, diminishing those inhibitory neurons’ activity would allow excitatory neurons to go unchecked, leading to sensory hypersensitivity.

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After finding out she was autistic, Siena Castellon sparked a global school movement that celebrates neurodiversity, which now includes nearly half a million students

Siena Castellon

So, what do you do?

I am a neurodiversity advocate. I believe that neurological differences, such as autism, dyslexia and dyspraxia, are natural variations in the human brain. Our society pathologises these conditions and focuses on trying to cure them. I am trying to flip the narrative so that society stops viewing us as defective and starts to embrace and harness our many strengths and talents.

Your new book is called The Spectrum Girl’s Survival Guide. Why did you write it?

When I was growing up, there were no books specifically aimed at autistic teen girls. They were all written for autistic boys by neurotypical adults. I decided to write the book that I wish had been available. I also wanted to write an uplifting book that encouraged autistic girls to embrace who they are and that reminds them that they aren’t alone.

What is in the book?

There are two main themes. The first is that we deserve to be accepted and embraced for who we are. Society pressures autistic girls to mask their true selves so that they can fit in and appear “normal”. This can be devastating to our sense of self-worth and our mental health. The second theme is advice on how to navigate school as an autistic teenager. I discuss socialising and making friends, crushes and dating, gender identity, social media, bullying and much more.

You talk about being bullied. Does this happen a lot to children with autism?

Unfortunately, society isn’t very tolerant of people who are different. I can’t remember a time at school when I wasn’t bullied, which explains why I have been to 11 schools. When I was diagnosed as being autistic, I learned that 75 per cent of autistic students report being bullied.

“I am told I look ‘normal’ and not autistic. People think this is a compliment, when it is actually an insult”

What are you working on right now?

Neurodiversity Celebration Week is coming up soon. I launched this campaign in 2018 to encourage schools to recognise the strengths and talents of neurodiverse students, instead of just focusing on their weaknesses and difficulties. There are currently more than 600 schools and 458,000 students taking part from across the UK, Australia, Canada and the US, and many organisations, including The Alan Turing Institute.

Is autism awareness and understanding improving?

I don’t think so, especially not in relation to girls and women. I am constantly told I look “normal” and that I don’t look autistic. The people saying this genuinely believe that they are complimenting me, when it is actually an insult. Most people’s benchmark seems to be Raymond from [the film] Rain Man and so people often tell me I can’t be autistic. Also, awareness isn’t enough. We should be striving for acceptance and equality.

What areas of science are you most interested in?

Physics and maths. I have been passionate about both since primary school.

If you could have a conversation with any scientist, living or dead, who would it be?

Alan Turing. He was a brilliant mathematician, computer scientist, cryptanalyst, theoretical biologist and philosopher. I can also relate to him because I know what it is like to not be accepted for who you are.

Do you have an unexpected hobby, and if so, please will you tell us about it?

I collect packs of cards. I have been able to count cards from a young age, which means I almost always win. That may explain why I love cards so much.

How useful will your skills be after the apocalypse?

Physics and maths are the language of nature. So my skills would be useful in rebuilding civilisation.

OK, one last thing: tell us something that will blow our minds…

Did you know that there is a hidden bear and fish in the Toblerone logo? One of the many advantages of being autistic is that I see details others may miss.

Siena Castellon’s book The Spectrum Girl’s Survival Guide: How to grow up awesome and autistic is out this month (Jessica Kingsley Publishers). Neurodiversity Celebration Week begins on 16 March @NCWeek

Is autism a gift?
Join Siena and cognitive scientist Anna Remington for our evening event on 12 May in London

Source: https://www.newscientist.com/article/mg24532721-700-autism-isnt-a-defect-heres-why-we-should-embrace-neurodiversity/#ixzz6FlXx6Xnz


Today, the Food and Drug Administration released their final ban on the electric skin shock devices used to torture children and adults with disabilities at the Judge Rotenberg Center. The rule will go into effect in 30 days. The JRC will have 180 days to transition people currently subject to this torture off of the devices. 

The Autistic Self Advocacy Network welcomes this ban, which will finally end decades of shock torture at the JRC. We are relieved beyond measure that soon our community members will no longer be punished with dangerous electric shocks for doing things like standing up without permission, making noises, or crying in pain. This ban is long overdue. During the six years that the ban sat at the FDA, people were terrorized, injured, and traumatized as the JRC continued to use electric shocks to punish and control them.

The FDA final ban was released after decades of work from advocates in every sector who brought the abuse to light, insisted that it was wrong, and fought to end it. Disability rights organizations, nationally and in every state, came together with an unprecedented level of consensus to oppose this torture. Self-advocates in Massachusetts and across the country made it their mission to stop the shocks. Provider and professional organizations stood up to their purported colleagues and worked to end the abuse of people with disabilities. Lawyers brought lawsuit after lawsuit against the JRC. Doctors provided expert testimony against the use of electric shock devices. Some people who were part of the harmful systems enabling the Judge Rotenberg Center — including regulators, policymakers in state government, and some of its former staff — reversed course, spoke out against the torture, and fought to end it. We are grateful to everyone who took a stand, and to the volunteers and grassroots organizers who joined ASAN’s advocacy campaigns and helped us hold the FDA accountable.

Above all, we are grateful to the survivors of the Judge Rotenberg Center. Without their advocacy, testimony, and the evidence they brought forward, publicly and privately, this regulation would not have been finalized. To the survivors, we say: what happened to you was wrong. It never should have happened. You did not deserve it. We are so sorry that you went through this. We are so sorry that it took us so long to stop it. You deserve so much better, and we will fight to make sure you have everything you need.

The release of the FDA ban is a landmark victory — and it is not enough. What happens next will be critical. The JRC will almost certainly sue to delay or prevent the ban’s implementation; we must stay in the fight, or risk ending up back where we started. And while the JRC will be forbidden from using electric shock devices, it is still allowed to use other forms of torture and abuse, including starving its residents, as a means of punishment and to control behavior. Nor is the JRC the only residential facility which tortures, injures, and kills people with disabilities. Their use of electric shocks may have been unique, but deliberate abuse by staff is endemic to congregate settings. When we isolate people with disabilities in segregated settings, then give service providers total control over every aspect of our lives, we are facilitating abuse and neglect. 

We must do better for all people with disabilities. We must finish closing the institutions that still exist across the country. We must end the use of aversives, restraint and seclusion, and abusive “therapies” across the board, and we must make meaningful, robust community living services a reality in every state. We must hold accountable the systems that allowed the Judge Rotenberg Center to torture with impunity, and ensure that violence against people with disabilities is recognized as violence even when it is done “for our own good.” The Judge Rotenberg Center itself, which has demonstrated an unyielding ideological commitment to torturing people with disabilities, must be shut down, and the survivors must finally be supported to live safe, self-determined lives in their communities.

The release of the ban on electric shock devices is a hard-won victory and a testament to the power of disability advocacy. It is also just one of many necessary changes, and it comes decades too late. We have been forced to spend years debating whether people with intellectual and developmental disabilities feel pain like everyone else; whether our disabilities disqualify us from having human rights; and whether we deserve to live free from fear and abuse. The next changes can’t come fast enough.

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN was created to serve as a national grassroots disability rights organization for the autistic community run by and for autistic Americans, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to educate communities, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN’s members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.

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On Sunday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide – and we need your help to make sure their lives are recognized. Each year, people gather around the world to mourn together and to demand justice and equal protection for all people with disabilities.

Thanks to the hard work of our vigil site coordinators, over forty-five vigils were held worldwide last year.  Site coordinators do vital work in their communities. They secure space in their communities to hold a vigil, do outreach to community members leading up to the vigil, and document their vigils through pictures or videos to honor those lost to filicide. Click here to learn about what site coordinators do, or to sign up to lead a vigil.

Since 2012, ASAN and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. We’ll be at our local vigils on Sunday, March 1st – and we hope to see you there.

If you’re interested in leading a vigil in your area, please sign up to be a Day of Mourning vigil site coordinator. Sign up to be a vigil site coordinator!




As I work on the railway, I began reflecting on what I could do not just for Archie but for other passengers travelling with disabilities like his. And now I’ve found a way to help

As a parent, there’s nothing worse than hearing your child is in distress or unhappy. So when my son Archie was diagnosed with autism earlier this year, I’ll be completely honest, I cried.

They were tears of relief, as the diagnosis had taken years to get. After lengthy waiting lists and being pushed from pillar to post, I’d resigned myself to never knowing why Archie was struggling. But they were also tears of fear. Like any parent in my situation, I instantly worried about what happens next and how my child would cope.

This year Archie started senior school, which requires him to catch two separate trains each day. My son’s aspirations for secondary school are the same as any other child: to make friends, learn new things and do all the normal things kids his age want to do. But with autism, something as simple as a disruption on the journey to or from school can have a huge impact, turning his world upside down. It’s something that many people, including myself as his mother, find hard to comprehend.

Every morning is different with Archie depending on how he feels, and we have to work hard to get him used to what is the “right” and “wrong” way to behave on a train, and how to travel safely. We also need to prepare him on what to do when things do go wrong – and who to contact if it does. 

As I work on the railway, I began reflecting more and more on what I could do not just for Archie but for other passengers travelling with disabilities like his, and how to allay the concerns of other parents, carers, friends and family who’s loved ones are seeking to, just like everyone else, make their way through life feeling independent yet supported.

That’s when I came across the “Just A Minute” (JAM) card and the “sunflower lanyard” – two schemes whose principal aims are to discreetly indicate to staff and the public that the person in possession of either may require a little more time or support when travelling. The schemes can not only help people like my son with autism but also elderly passengers with conditions such as Alzheimer’s disease.

The card is intended to support passengers by asking others to have patience, whereas the sunflower lanyard is a way to indicate to transport staff that the passenger has a hidden disability. Staff can also wear a badge to indicate they are aware of the scheme and have received specialist training to better understand what might be needed of them.

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the Autistic Self Advocacy Network logo
Four people with disabilities work together to paint the words #WorkWithUs on a wall

When she was young, Laura worked in a sheltered workshop. She was paid eight cents an hour doing contract work. Nicki faced discrimination at work. She was told that asking for accommodations that would let her work with everyone else were “a waste of taxpayer money”. They both now work in integrated employment, but too many people are still trapped in sheltered workshops. 

We need to continue pushing our elected officials to support integrated employment for all people with disabilities. This is our fifth TCEA Tuesday—you’ve kept the momentum going this far, and we need your help to pass the bill! 

Here’s how YOU can push TCEA to victory:

  • Keep calling your elected officials – Calls are an effective way to reach your Congresspeople. We’re here to support you with TCEA Tuesdays, a script, and our new proxy calling system for people who are unable to use the phone.
  • Make calls for someone else – If you are able to do so, offering to join our proxy calling system and call for other people is a great way to make sure our message is being heard. You can learn more about how the system works here.
  • Visit your elected officials in person – Your Congresspeople are home for August recess, making now a better time than ever to see them in person and talk to them in real life about the kind of impact TCEA would have on our community.
  • Go to a town hall – To find out if there’s a town hall or other public event coming up near you, visit TownHallProject.com and type in your ZIP code. We have a new guide on what to expect at a town hall available here.
  • Spread the word – Share our TCEA Tuesdays page and use our sample tweets and posts to encourage your friends to get involved in our fight for integrated employment!

We would love to hear from you! Let us know how you’ve been taking action and what you plan to do next by tweeting us @autselfadvocacy.

TCEA won’t just end subminimum wage—it will fund programs that expand supported employment, so more people like Nicki and Laura can work in their communities. Your calls are pushing more and more cosponsors aboard this bill, so don’t stop now! Together, we can pass TCEA and take a huge step towards equality in employment for all people with disabilities.

Learn how you can #WorkWithUs!

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