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December 2014



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Archive for December, 2014

Dear friends,

It’s been a big year at ASAN. This year, we ended the Combating Autism Act and began fighting for self-advocate inclusion in implementing the new Autism CARES legislation. We made sure that workers with disabilities working on federal contracts made the same wages as nondisabled workers. We helped get justice for disabled victims of violence from family members. On these issues and countless others, we are working to protect our community against those who seek to deprive us of our rights. And after many years of struggle, we are seeing tangible results.

Just last Monday, the President signed the ABLE Act, which will let people with disabilities save up for college, assistive technology, housing and other major expenses while keeping their Medicaid coverage.

But we still have a long way to go. Autistic people and people with other disabilities still lack many of the basic legal protections that we need to live independent, full lives – or even to live at all.

Just this month, a Wisconsin court announced that people with disabilities don’t have a constitutional right to make our own decisions about whether to live or die. That decision denied justice to a developmentally disabled teenager who died of treatable pneumonia nearly eight years ago, after doctors at the state-run University of Wisconsin Hospital Center took him off of antibiotics. Not because treatment wasn’t working or because he wasn’t expected to recover, but because one of the hospital doctors had convinced his parents that his life wasn’t worth saving. Nobody asked him what he wanted. There was no oversight by either the hospital ethics board or the court system. Just a unilateral decision that the child should die.

Before the court issued its decision, ASAN and eleven other disability rights organizations sent the court a brief explaining how important it was to protect people with disabilities from this kind of discrimination. We are committed to making sure that people with developmental disabilities are recognized as lives worth living.

The fight isn’t over. This January, we’ll be sending in yet another brief to the Wisconsin Supreme Court, asking it to review the case. Even after that, we’ll still be fighting anywhere we can: courts, state legislatures, the media, anywhere where disabled lives are under threat. We’re in this to win – because the stakes are too high not to.


But we need your help in order for that to happen. Next year we’ll be even busier than last. We’ll be continuing our fight to make sure that autistic people are able to make their own decisions, live in the community, earn the same wages as everyone else, and get the health care we need.

If you want to support the work we do, please take the time to send a donation our way. As the only advocacy organization that’s run by and for autistic people, our voice is vital, but there is still so much more that we could do. With your help, we can grow our advocacy arm so that we can do even more and respond to those who seek a world without us.


Donate now, and help us make sure that whenever our voice is needed, we’ll be there leading the conversation.

Samantha Crane
Director of Public Policy
Autistic Self Advocacy Network


Associate Editor


Many people have stopped setting New Year’s resolutions. That’s because traditional resolutions can feel tedious, punitive, uninspiring and overwhelming. Instead, many individuals have started selecting one word to encapsulate the upcoming year.


“The power in claiming a word for the year is that it allows you to claim who you wish to be in the world rather than grounding your worth and well-being in what you do,” said Rosie Molinary, author of the book Beautiful You: A Daily Guide to Radical Self-Acceptance.


Picking a word helps you chart the path to living a life you’ve imagined for yourself, she said.


Think of your word as a flashlight that guides and illuminates your next steps. It is a word that inspires and invigorates you. It is a word that sums up how you’d like to spend your days.


In the past years Molinary’s words have included: thrive; flow; wholehearted; expansiveness; well-being and peace. She’s still deciding her word for 2015 but these words have been resonating with her: spark; shine; abundance; radiate; glow; manifest; and embody.


She also shared these other examples of words of the year: connect; commit; leap; grow; patience; simplify; explore; and now.


Read in Full:





Depression During the Holidays


I haven’t written much in the last couple of weeks. This season with its “holiday cheer” and dark, fog-filled weather, has had me in one of the worst depressions I’ve experienced in over a year. And although my house has been the family hub for celebrations from Thanksgiving to Christmas Day, I’ve been struggling to keep my nose above the water.


Oh, I’ve played the “I’m fine” card, but my kids know the real me – angry, sad, short-tempered and highly anxious. It’s been a hard thing to get through, even with my online support group – Group Beyond Blue on Facebook.


But now that the cooking and baking is done, the wrappings cleaned up, and the house quiet for a few days at least, I am left to pick up the pieces of myself that I’ve left strewn all over the place.


Starting Over


I feel like I’m starting over once yet again. Picking up the pieces of relationships I’ve broken and damaged and learning to forgive myself again and again for something that is out of my control: my unstable mood.


Taking Steps


Here are the steps I’m going to take to come out of this state of winter depression, even though winter is still in full force here in my hometown.

  1. 1. Forgive myself. I need to acknowledge that I’m so very conflicted about my feelings and behavior for the last two or so months. I’ve behaved in ways that I’m ashamed of, but beating myself up never helps and only makes things worse in the long run. Acknowledging again and again that I have a mood dysregulation disorder in bipolar disorder, though hard to do, isn’t an excuse, but the reason for my erratic behavior at home.
  1. 2. Reintegrate into my community. Whether it be heading back to church, taking my daughters out for lunch, meeting a friend for coffee, I need to add balance to my life and day but not isolating and dwelling on what’s past and what I can’t change or control.
  1. 3. Get organized. Time to open mail from the last month, make some to do lists (which are not for everyone) and get back on budget. When depressed, I tend to eat and buy everything in sight. I must get myself back under control by organizing my activities and prioritizing tasks.
  1. 4. Get fresh air and sunlight. I tend to be a hermit when feeling overwhelmed and depressed, as many of us do. I need to force myself to put the leash on the dog and get out for even a 20-minute walk. One of my goals for the New Year is to learn to run and I want to start by just walking the dog three times a week. If I can write a dissertation, surely I can walk the dog?
  1. 5. Pray, meditate, and trust. My faith has always been a huge part of me getting through depressive episodes and this time of year reminds me that, no matter what happens, I can get through it.


Read in Full:




Leo Tolstoy.


War and Peace and Anna Karenina are still considered masterpieces of Russian Literature. Tolstoy wrote a book exploring his own tendency toward depression called A Confession.


As he reached middle age, his depression seemed to worsen. He became overly concerned with his success, and started giving his personal possessions away. Later, he was critical of himself for not having the courage to commit suicide.


Ernest Hemmingway.


Hemmingway is known as a brilliant Nobel Prize winning author, (The Old Man and the Sea). He’s said to have suffered from depression, bipolar disorder, had borderline and narcissistic personality traits, and later suffered with psychosis.  Instead of approaching doctors for help, Hemmingway infamously self-medicated with alcohol.


His manic side was evidenced by some of his high-risk behaviors, such as in deep-sea fishing,  shooting animals in the wild, and dodging bullets as a war correspondent.  His family tree was populated with relatives suffering from depression, many of whom committed suicide.  He killed himself with a shotgun in 1961.


Philip K. Dick.


Dick is perhaps the most visionary sc-fi writer of the last century.  His works are the most adapted sci-fi classics in recent film history.  Movies like Blade Runner, The Minority Report and Total Recall are just three of dozens of ingenious stories adapted from novels and short stories he wrote.


As a teenager, Dick was plagued by vertigo.  As he grew, there were signs of schizophrenia, including eventually, visual and auditory hallucinations.  He was hospitalized, but somehow managed to keep writing. At one point he felt there was a beam of “pink light” being transmitted directly into his consciousness.


Franz Kafka


Kafka wrote in a completely original style exploring existential ideas about life.  The Trial and Metamorphosis are two of his better known stories.  Kafka was a loner, a genius, who suffered from social anxiety and depression.  He worked in obscurity at an insurance company in Prague, where he noticed that life was bound by pointless bureaucracy.


It’s thought his depression came from having only a handful of his works published during his lifetime.  He also suffered from migraines, boils and insomnia brought on by the stress of working so hard at writing with so little to show for it.


Sylvia Plath. 


Death was a recurrent theme in Plath’s poems.  Sometimes death meant “death and rebirth” to her, sometimes she wrote about “death as an end.”  Her poems have titles like Stillborn, and Two Views of a Cadaver Room.


Plath was known among her colleagues for significant mood swings, along with impulse control issues.  While still in college, she attempted suicide several times.  In 1963 she committed suicide by placing her head inside an oven.


Read More …


Image: http://threehautemamas.typepad.com/blog/2010/12/a-spectacular-seaside-homes-holiday-tour.html


Dear Readers,



Wishing you a wonderful Christmas and a very happy, healthy and prosperous 2015!






I want to tell you something exciting. Last June, 15 Autistic college students descended on Washington, D.C. For many, this was their first time in Autistic space; by the end of the week, they were marching confidently into Congressional offices and advocating with poise and skill for our community. Several of these meetings were instrumental in ASAN’s efforts to end the Combating Autism Act. Those 15 students are back on their campuses now, working hard to bring systems change to their colleges, local communities, and states.


We’ve held ACI for 3 years now, and in that time we’ve been able to train 47 Autistic self-advocates in grassroots organizing, disability and Autistic history, and policy advocacy.  We do this because ASAN’s motto is that old disability rights slogan: nothing about us, without us! We take as an assumed fact that autistic people should be leading each and every conversation about our community. It is not enough to have some token representation, to have a seat at the table but no voice; autistic advocates deserve meaningful, substantive participation and leadership roles. We’ve been hard at work creating a pipeline of self-advocate leaders who can represent our community with confidence and skill.


If I tried to tell you about everything ASAN has worked on this year, we’d be here through to 2015. So I’ll just talk about one more. In March of 2014, ASAN held our largest Day Of Mourning yet, with 25 sites all across the country. But we haven’t taken a break from our anti-filicide work since; we’ve filed amicus briefs, sentencing statements, and letters to the court on multiple cases, and I’ve written more statements mourning murdered members of our community than I really want to count. This has to stop. So we’ve developed and tested an anti-filicide toolkit, for use by members and allies responding to incidents in local communities. We’ll be releasing the final version of the toolkit in January, and gearing up for another Day Of Mourning. I hope you’ll join us.


We’re building a network, just like our name says: a deeply connected and highly skilled group of advocates from all across the country with the same values and the same priorities, able to step up wherever we are needed and advocate for the rights of our community. We want to build a world where every autistic person can live a life assured of our rights, in our own communities, safe from harm and confident in our future. And we can’t do it without you.


It’s the end of the year for us, and traditionally now is the time when organizations like us ask that, if you like what we’ve been up to, you send a donation our way. It’s an honor and a privilege to have the opportunity to do this work for my community, and I’d like to be able to keep doing it for many years. In order to keep going, though, we need your help. Donate now, and help us make sure that whenever our community is being discussed, we are leading the conversation.


I’ll see you next year,


Julia Bascom

Director of Programs


Donate Now!




Do you look forward to seeing your family at the holidays, but then often come away feeling vaguely disappointed, confused, angry or guilty?


If this is true of you, then you need answers to what is truly going on in your family.  And you need them quickly since The Holidays are here. Is it possible to make this year’s family gathering less disappointing?




As a psychologist I have found that as adults, family dynamics have the power to make or break our holidays. And that family dynamics have the most power when they run under the surface, unseen and unknown by the family members themselves.


The bad news: it is often very difficult to change your family dynamics. The good news: it is usually not necessary to change them. Being able to see what is really going on between family members is enough to make you less vulnerable.


Here are Four Subtle Family Dynamics that can ruin your holidays:

  2. 1. Good Parent / Bad Parent: In this family, one parent is difficult, absent or mean; and the other is constantly trying to smooth over, hide or make up for his bad behavior. This dynamic is hard for many people to notice because we human beings have a natural tendency to see our parents as a unit. It leads to many confusing feelings, since the hurt caused by the Bad Parent doesn’t actually go away; it just gets smoothed over by The Good Parent. You are left sitting with pain which you cannot understand.
  2. 2. Black Sheep: In this family, there is one child who is identified (sometimes very subtly) as “the problem child,” “the troubled one,” or “the one who doesn’t fit in.” This dynamic is pernicious because it is actually one thing disguised as another. To all of the siblings, it appears that the Black Sheep is causing his or her own problems. Whereas the true cause is usually the parents. Typically the parents have somehow, below the radar (and often unaware themselves), singled out this child. Perhaps he is the child who is least similar to the parents; perhaps he is the child who needed something that the parents couldn’t give him. In any case, it is almost never the Black Sheep’s fault.


Read in Full:



Anxiety can be crippling, but sometimes it is a crucial part of getting the best out of yourself.


Artists, comedians, athletes and other performers often talk about the right amount of anxiety and how it can improve creativity and performance.


But anxiety also has a number of lesser known upsides…


1. People will trust you more


People who are feeling anxious can easily get embarrassed, but that’s not necessarily a bad thing because research shows people are more trusting.


Dr. Robb Willer, the study’s author explains:

“Moderate levels of embarrassment are signs of virtue.

Our data suggests embarrassment is a good thing, not something you should fight.

Embarrassment is one emotional signature of a person to whom you can entrust valuable resources.

It’s part of the social glue that fosters trust and cooperation in everyday life.”


2. Fewer fatal accidents


Anxious people often say they are less likely to be injured because they are thinking ahead, but is that really true?


Apparently it is.


One study has found that anxious adolescents are considerably less likely to be killed in an accident than their less anxious peers.


The authors explain:

“Our results suggest there are survival benefits of increased trait anxiety in early adult life, but these may be balanced by corresponding survival deficits in later life associated with medical problems.”


In other words: anxiety may get you down in the long-term but it keeps you alive.


Read in Full:



We’ve all heard the admonition “you need to forgive and forget.” Many of us heard this as a child from our parents when we had been wronged by a sibling or friend. We were told to turn the other cheek and give our pals another chance.
Some of us learned the idea behind this was the golden rule — do to others what we would have them do to us. As parents can be quick to point out, we’ve certainly been guilty of committing our own transgressions and needing forgiveness.

Our parents were not wrong. Knowing how to forgive someone is an essential life skill. It serves us well in our love lives and professional relationships. It saves friendships and restores our faith in our kids. And we definitely benefit from it when those in our lives are able to forgive us when we inevitably screw up.
Forgiving and forgetting is great in theory, but in reality it’s difficult. Below are four reasons why it’s important to forgive but not forget.
Read More …