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February 2020
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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!

By Rick Nauert PhD
Associate News Editor Last updated: 9 Aug 2019  ~ 2 min read

Emerging research suggests that for some individuals, online symptom self-management plus clinician telecare is the best strategy for treating anxiety, depression and pain.

As a background, it is well documented that pain is the most common physical symptom for which adults seek medical attention in the United States. Moreover, anxiety and depression are the most common mental health issues for which adults visit a doctor. We also now understand that medications, especially opioids for pain, may not be the only or best therapy.

In the new study, Regenstrief Institute research scientist Kurt Kroenke, M.D., a pioneer in the treatment of patient symptoms, discovered online symptom self-management or online symptom self-management plus clinician telecare can be effective solutions for individuals with anxiety, depression and pain.

“Pain, anxiety and depression can produce a vicious cycle in which the presence of one symptom, if untreated, may negatively affect the response to treatment of the other two symptoms,” said Dr. Kroenke.

“So treating not just pain, but pain and mood symptoms simultaneously is quite important, as is doing it how, when and where the patient is most receptive.”

In the study, published in the Journal of General Internal Medicine, Dr. Kroenke and colleagues discovered that online symptom self-management works to decrease pain, anxiety and depression symptoms. They also found that online symptom self-management works even better when coupled with clinician telecare.

Prior studies have found a benefit to adding telecare to usual care in the doctor’s office. The researchers have now shown that the intermediate (and less costly) mechanism of online pain and mood self-management is effective and, for some, even more effective when coupled with live phone follow-up with a nurse.

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By Helen Nieves
Last updated: 16 Apr 2015 ~ 3 min read

What is Anxiety and Panic Attacks?

Anxiety is a part of life and normal to experience at some point or another. It’s a normal reaction to stress and can be beneficial in some situations. When you have an anxiety disorder, the anxiety becomes excessive where you have difficulty controlling it and interferes with daily life. The anxiety remains with you for months and can lead to phobias and fears which impact your life. Anxiety continues even after the stressor is gone. It is a fear that is accompanied by feelings of impending doom.

Common signs of anxiety are diarrhea, irritability, restlessness, headaches, sweating, upset stomach, muscle tension, anger, rapid heartbeat, and unable to concentrate, just to name a few. There are several anxiety disorders such as Generalized Anxiety Disorder (GAD), Panic Disorder, Obsessive Compulsive disorder, post-traumatic stress disorder, social phobia, and agoraphobia. Anxiety disorder is very common in the United States. Most of my clients who come to see me suffer from an anxiety related disorder.

A panic attack brings on sudden attacks of fear with no reason. It triggers physical reactions with no real danger or threat. It can happen with no warning and at any time. Symptoms usually peak within 10 minutes. A person usually fears that they will have another panic attack and often avoid situations where they may occur. Agoraphobias may develop because the person may be afraid to leave their home because nowhere seems safe. Symptoms of panic attacks include feelings of impending doom, fear of losing control, trembling, hyperventilation, chest pain, headaches, tightness in your throat, trouble swallowing, hot flashes and sweating, just to name a few.

There are many types of treatment for anxiety and panic attacks. Finding the right professional to help you cope with these disorders is important. There are many medications a doctor can prescribe to you to help manage with the symptoms. There are also natural supplements, relaxation training, cognitive behavioral therapy, exposure therapy, group therapy, and support groups which can help reduce the symptoms. Lifestyle changes such as stress management, exercising, removing stimulants and sugar from your diet, changing your perspective to situations, and changing your attitude from controlling things or the need to please others can also be of help to manage with anxiety or panic attacks.

Providing Support:

If you or someone you know takes care of a person who has panic or anxiety attacks, I would advise you to know as much as you can about the disorder. Ask the person with this disorder to share with you their thoughts and their feelings about the disorder during an attack and when they feel calm. The following is a list of tips that may be helpful in supporting a loved one or friend who suffers from these disorders:

  1. Listen: You should just listen and do not try to solve the attack. You cannot fix it or take the attack away.
  2. Support: Learn how to support your loved one or friend when they have an attack. Find out from them what will help and what they need you to do during an attack.
  3. Organize activities: Let the person organize activities that you can do together. If they set their own parameters, they may be more willing to try them.
  4. Compromise: Be open to adjustments that can help in making an outing successful and comfortable. Make adjustments for other similar activities that make the person uncomfortable such as taking stairs instead of an elevator.
  5. Respect: Never belittle or downplay the attack. This is a real disorder. Do not dismiss their attack or try to solve their problem though realization.
  6. Understand: When a person is going through an attack, rationality and listening is not what they are concentrating on. You have to understand that you cannot make the experience go away by trying to rationalize the situation to them.

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By Margarita Tartakovsky, M.S.
Last updated: 25 Nov 2018 ~ 4 min read

For something so common, anxiety is still massively misunderstood. There are myths and misconceptions about everything from what anxiety disorders look and feel like to what actually helps to treat these illnesses and navigate anxiety. Which is why we asked several anxiety experts to clear things up. Below, you’ll find their illuminating insights.

Living with an anxiety disorder can be exceptionally difficult.

Many people minimize and trivialize anxiety disorders. For instance, how often have you said or heard someone say “I’m sooo OCD about my desk!” or “I’m really OCD about using hand sanitizer”?

Such comments not only misconstrue OCD (cleanliness is just one way that OCD manifests), but they also leave sufferers feeling misunderstood and alone, said Janina Scarlet, Ph.D, a clinical psychologist and author of the book Superhero Therapy: Mindfulness Skills to Help Teens and Young Adults Deal with Anxiety, Depression and Trauma.

OCD—and other anxiety disorders—can be debilitating and devastating illnesses.

“Individuals with OCD suffer on a daily basis, some completing hours of rituals, while others are paralyzed by intrusive thoughts,” said Scarlet. People with other anxiety disorders also experience “a tremendous amount of distress” day to day. For some of Scarlet’s clients, it can take hours to get out of bed, while others are unable to leave the house (or another space “they deem to be safe”).

“Someone with illness anxiety disorder may [believe] they have a life-threatening illness…. [People with] GAD (generalized anxiety disorder), or OCD may have recurrent intrusive thoughts about their biggest fears coming true. It is similar to experiencing one’s worst nightmare on loop in someone’s mind.”

Some people with social anxiety are so afraid of rejection or humiliation that making eye contact, waiting in line or saying “hello” triggers overwhelming anxiety or panic attacks, she said.

And what makes all of this worse is criticism from others, and comments like “just try to get over it,” Scarlet added.

Anxiety can be successfully treated in a timely fashion.

Even though anxiety disorders are difficult, they’re one of the most treatable disorders. Yet only a third of people seek treatment, said Kevin Chapman, Ph.D, a psychologist who specializes in evidence-based treatment for anxiety and related disorders in adults and adolescents at his private practice in Louisville, K.Y. That’s because “Most individuals with anxiety disorders manage their anxiety through avoidance behaviors.”

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By John D. Moore, PhD
Last updated: 19 Mar 2018 ~ 2 min read

You have anxiety and have probably been living with it your entire life. I completely understand. That’s because I’ve struggled with this condition ever since I can remember.

Here are 10 small things you can do each day to help stay calm. You may think a few of these are silly. That’s OK. Try them anyway. What do you have to lose?

1. When you wake up in the morning and your mind starts rattling off a “to-do” list, take a deep breath. Focus your awareness on the moment. Using your five senses, identify what’s going on around you. This can help soften obsessiveness, and remove the sense of dread you might be feeling.

2. Find some quick humor by visiting a funny meme page on Facebook or checking out a comic strip from a newspaper. There are even apps you can download to get your funny on. The idea is to laugh and get out of your head.

3. Practice gratitude by finding something to be grateful for. It could be a friendship, your health or simply having an extra can of soup in the cupboard. This will help to focus your mind on the positive instead of the negative.

4. Do one task at a time. Don’t allow yourself to play the game of multi-tasking. Not only will it make your anxiety worse, research tells us most of us aren’t good at it.

5. Lean into your anxiety by doing something productive. This could be scrubbing out the sink or mopping the floor. Trying to pretend you aren’t feeling anxious only makes things worse. Do something constructive with that energy that benefits you in the long run.

6. Carry apples with you. The hard truth about living with anxiety is nervous eating. In many cases, this means reaching for whatever is in front of us (even when it’s unhealthy). If you are going to snack, why not consume something healthy? Apples are great because they give your mouth something crunchy to munch on while delivering fiber and vitamin C to your body.

7. Put money in your piggy bank each day. This can help you feel like you are doing something about financial stress; a common source of anxiety. It could be $1.00 or $10.00. The amount doesn’t matter. What does matter is the peace of mind you will gain by knowing you are saving.

8. Move your body. This could be something simple, such as a walk around the block or doing some quick jumping jacks. You don’t have to start a gym routine (although that doesn’t hurt). By becoming more physically active, you give all that energy you are carrying a place to discharge.

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By Traci Pedersen
Associate News Editor Last updated: 8 Aug 2018   ~ 2 min read

Although individuals with autism spectrum disorder (ASD) appear to have a higher number of mutations in oncogenes (genes with the potential to cause cancer), they actually have lower rates of cancer, according to a new study at the University of Iowa.

The multidisciplinary team analyzed gene databases of patients with autism and found that autistic patients have significantly higher rates of DNA variation in oncogenes compared to a control group.

The researchers then followed up this finding with an analysis of electronic medical records (EMR) and discovered that patients with a diagnosis of autism are also much less likely to have a co-occurring diagnosis of cancer.

“It’s a very provocative result that makes sense on one level and is extremely perplexing on another,” says Benjamin Darbro, M.D., Ph.D., assistant professor of medical genetics in the Stead Family Department of Pediatrics at the UI Carver College of Medicine.

The researchers compared 1,837 patients with autism spectrum disorder to 9,336 patients with any other diagnosis, and determined what proportion of each group of patients carried a cancer diagnosis. They found that for children and adults with ASD there appeared to be a protective effect against cancer.

Specifically, 1.3 percent of patients with ASD also had a diagnosis of cancer compared to 3.9 percent of the control patients. This protective effect was strongest for the youngest group of patients and decreased with age.

For ASD children under 14 years of age, the odds of having cancer were reduced by 94 percent compared to individuals in the same age range without autism. Both males and females with ASD demonstrated the protective effect.

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By Rick Nauert PhD
Associate News Editor Last updated: 8 Aug 2018   ~ 1 min read

The recent “coming out” by Scottish singer Susan Boyle, who found she has high-functioning autism, also known as Asperger syndrome, improves awareness and shows that those with autism spectrum disorders can lead a full life — albeit one with unique challenges.

Now, researchers at Karolinska Institutet have announced a new screening tool to facilitate the diagnosis of autism in adults.

Autism spectrum disorders (ASDs) can cause major problems in communicating and interacting with other people, and can lead to compulsive routines and interests.

In adults, distinguishing ASD from other psychiatric conditions can be difficult, as their symptoms often overlap or are similar to those in schizophrenia, attention-deficit hyperactivity disorder (ADHD) or severe personality disorders.

Screening methods used today for making a correct diagnosis can sometimes be time-consuming and require considerable expertise.

Research specialists at the institute’s Department of Clinical Neuroscience have, under the leadership of Associate Professor Susanne Bejerot, M.D., Ph.D., refined and simplified an existing American test, RAADS-R (Ritvo Autism and Asperger Diagnostic Scale-Revised).

The new test is a questionnaire with 14 self-screening questions and is known as the RAADS-14 Screen.

The scale includes three sub-scales that measure mentalization difficulties, social anxiety and sensory oversensitivity — all common symptoms in autism.

The answers are categorized on the basis of whether the symptoms appeared in childhood or developed later in life.

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