ASAN New England

Focus Group on Autism and Ethics

2011-05-29T12:36:00.000-07:00

A Focus Group of the Autism Now Center
http://autismnow.org/
Keynote Speaker: Ari Ne’eman, President, Autistic Self-Advocacy Network

The Autism NOW Center is a new initiative of the Arc. It is funded by a grant from the Administration on Developmental Disabilities. ASAN is one of the partner organizations which will provide subcontracted services to the Center. The purpose of the Center is to disseminate information and resources about autism via a website, social media, regional summits, and other methods.

The purpose of the focus group/discussion session will be to help identify a set of core ethics and values for the Autism NOW Center. The focus group involves a set of breakout sessions concerning a variety of topics of interest to Autistic individuals and their families, including education, employment, housing, medical and psychiatric issues, and many others. The meeting time and location is as follows:

Saturday June 25, 2011 –Watertown Library, Watertown MA, Watertown Savings Bank Room– 1:30-5PM

Please contact asannewengland AT hotmail DOT com with your name, email, and phone number if you would like more information about this focus group.

July ASAN-NE Meeting

2010-07-16T18:25:00.000-07:00

The July 2010 meeting for the Autistic Self-Advocacy Network, New England Chapter (ASAN-NE) will take place on Saturday, 24 Jul 2010 from noon-2pm. The meeting will take place in the Watertown Savings Bank room of the Watertown Free Public Library. Please respond to asannewengland AT hotmail DOT com if you plan to attend or if you have any questions.

May ASAN-NE Meeting

2010-05-16T18:33:00.000-07:00

The May 2010 meeting for the Autistic Self-Advocacy Network, New England Chapter (ASAN-NE) will take place on Saturday, 22 May 2010 from noon-2pm in the Raya Stern Trustees room of the Watertown Free Public Library.

This meeting is free and open to the public. So we can get an accurate attendance estimate, please respond to asannewengland AT hotmail DOT com if you plan to attend or if you have any questions.

ASAN Update on Inter-Agency Autism Coordinating Committee (IACC) Appointment of Ari Ne’eman

2010-05-03T20:09:00.000-07:00

The Autistic Self Advocacy Network applauds HHS Secretary Kathleen Sebelius' appointment of ASAN President Ari Ne'eman to the Inter-Agency Autism Coordinating Committee (IACC). The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism. ASAN has given regular public comment at the IACC in the past and looks forward to continuing to be an active part of the IACC process. To learn more about the IACC, go to http://iacc.hhs.gov/.

A news release has been posted on the Health & Human Services website:

http://www.hhs.gov/news/press/2010pres/04/20100430a.html

Be Included in Autism Research

2010-05-03T20:06:00.000-07:00

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in research WITH autistic adults, not just ABOUT autistic adults.

The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

* encourage the inclusion of autistic adults in matters which directly affect them;

* include autistic adults as equal partners in research about autism;

* answer research questions that are considered relevant by the autistic community;

* use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the AASPIRE the Gateway Project, you can

Go to the Gateway home page at www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora AT aaspireproject DOT org.

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB #3762; UW IRB# SE-2008-0749

Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University

Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

March 2010 ASAN Meeting

2010-03-18T16:28:00.001-07:00

The March 2010 meeting for the Autistic Self-Advocacy Network, New England Chapter (ASAN-NE) will take place on Saturday, 27 Mar 2010 from 2-4pm. The meeting will take place in the Watertown Savings Bank room of the Watertown Free Public Library. Please email asannewengland AT hotmail DOT com f you plan on attending or if you have any questions.

Make Your Voice Heard by the Federal Government about Employment!

2010-02-23T14:35:00.000-08:00

The US Department of Labor's Office of Disability Employment Policy (DOL/ODEP) will be holding a Listening Session -- a hearing in which people with disabilities are invited to provide testimony -- at the Sheraton Boston Hotel (near the Hynes/Auditorium stop on the T's Green Line) on Wednesday March 3.

This is a great opportunity for our community to educate Federal policymakers about the issues we face trying to obtain and *maintain* employment, as adults on the spectrum.

The DOL and ODEP need in particular to hear about the issues that folks on the autism spectrum face, that are different from those faced by folks with physical disabilities (about which they are a lot more aware, at present).

We can provide oral testimony in person at the hearing, and/or written testimony at any time from now through March 3, the hearing date.

There will also be an (optional) workshop meeting at AANE's office in Watertown MA, from 12 noon to 2 pm on February 27 (the Saturday preceding the hearing date.)

The February 27th workshop meeting is for us to help one another organize our own individual testimony and make it as effective as it can be, whether oral or written.

To register to attend the hearing on Wed March 3, and/or to provide written testimony, visit

https://www.disabilitylisteningtour.com/register/index.php?cityclicked=Boston

For more information about the hearing (and the others like it that are being held around the country), visit

http://www.disabilitylisteningtour.com/

For more information about the pre-hearing workshop meeting at AANE on Sat Feb 27, email Phil Schwarz,

pschwarz AT ix DOT netcom DOT com

Travel directions:

The Sheraton Boston (where the hearing will be held, on Wednesday March 3) is located at the corner of Dalton St. and Belvidere St. in Boston's Back Bay, a short walk from the Hynes Convention Center station on the MBTA Green Line. From the MBTA station, walk south on Massachusetts Ave., past Boylston St. and the Berklee College of Music on your left, to Belvidere St. Turn left onto Belvidere St. and walk east past the Hilton hotel on your left, to Dalton St. The Sheraton Boston will be across Dalton St. on your left.

AANE's office is at 85 Main St. in Watertown, MA, a short walk from Watertown Square (a destination served by the MBTA's 71-Mount Auburn, 70-Central Square, and 57-Kenmore bus lines). From Watertown Square, head west on Main St. past the Not Your Average Joe's restaurant on your right to Church St. #85 is the office building occupying the next block after Church St. on your right. The pre-hearing meeting at AANE is on a non-business day, so only the back door of the building will be open. Turn right on Church St. and then left into the parking lot behind the building, where you will see the back door of the building on your left. AANE's office is on your left on the ground floor once you enter the building via the back door.

November ASAN-NE Meeting

2009-11-08T10:36:00.001-08:00

The New England Chapter of ASAN will have its November meeting from 2pm to 4pm on Saturday, 21 Nov 2009 at the Watertown Free Public Library in Watertown MA. The meeting will take place in the Watertown Savings Bank Room.

This meeting is free and open to the public. So we can get an accurate attendance estimate, please respond to asannewengland AT hotmail DOT com if you plan to attend.

The Watertown Library is located at 123 Main St, Watertown MA 02472-4401.

ASAN-NE Protests Autism Speaks' Walk for Autism, East Boston MA, 18 Oct 2009

2009-10-20T03:01:00.000-07:00

On Sunday, October 18, ASAN-New England members and other disability rights advocates protested Autism Speaks' Walk for Autism, held at Suffolk Downs in East Boston. Although 15 individuals RSVPed, inclement weather kept all but 7 from attending. The first choice of protest location, as well as the location that the Suffolk Downs staff recommended, were both too far removed from the walk to be effective. Instead, we went inside Suffolk Downs, and we went onto the track to protest once the walk had begun.

We were on the track for an hour before the weather forced us inside. We chanted and held up posters that said:

I am a person, not a puzzle
Nothing about us without us
Keep $$$ local, do not donate to Autism Speaks
End fear and stereotypes, refuse to support Autism Speaks
Autistic and over 18: Autism Speaks says I don't exist
Odds of Autism Speaks funds directly benefiting autistic people: 1 in 50
Congratulations BOSTON! You just raised Geri Dawson's $alary!!

Most of the walkers looked at us curiously, as if they were unaware that there was a controversy surrounding Autism Speaks. They mostly seemed interested but confused. A few smiled and waved. The walkers showed very little animosity and open hostility toward us in the hour in which we protested.

When the weather forced us inside, and when we decided the walkers needed to know more about our cause, we started distributing flyers. Many people took the flyers and were interested in what we had to say. However, we did not have a chance to distribute too many flyers before we got thrown out by Autism Speaks staff. Although we had been civil with them up until that point, the Autism Speaks staff responded by shouting profanities and telling us we weren't really autistic.

October ASAN-NE Meeting

2009-10-03T15:39:00.000-07:00

The New England Chapter of ASAN will have its October meeting from 2pm to 4pm on Saturday, 17 Oct 2009 at the Watertown Free Public Library in Watertown MA. The meeting will take place in the Watertown Savings Bank Room.

This meeting is free and open to the public. So we can get an accurate attendance estimate, please respond to asannewengland AT hotmail DOT com if you plan to attend.

The Watertown Library is located at 123 Main St, Watertown MA 02472-4401.

ASAN New England Protests Autism Speaks

2009-09-28T16:07:00.000-07:00

In light of Autism Speaks' "I Am Autism" PSA and other controversial campaigns, the New England chapter of the Autistic Self-Advocacy Network (ASAN) is planning protests of Autism Speaks walks in Nashua (Oct 4) and Boston (Oct 18) . Walk locations are as follows:

Nashua:
Greeley Park
100 Concord St., Nashua, NH 03064
Registration opens 10am, walk starts 11am

Boston:
Suffolk Downs
111 Waldemar Ave., East Boston MA 02128
Registration opens 9am, walk starts 10.30am

These protests come on the heels of successful Autism Speaks protests in Columbus OH and Portland OR. If you are interested in attending the walks in Nashua and/or Boston, please contact asannewengland AT hotmail DOT com.

Autism Speaks, but What is it Saying?

2009-09-27T18:21:00.000-07:00

An Analysis of Autism Speaks’ “I Am Autism” PSA

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

“Children” falsely implies that autism primarily occurs in children. “Your children” shows that this message is targeted to parents of autistics, rather than autistics themselves. Autism Speaks cannot speak for autistics if it cannot even speak to us.

I know where you live.

And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined

Not only does this make autism seem worse than AIDS, cancer, and diabetes combined, but it also confuses prevalence rate with onset by using the word “faster”. Saying autism works “faster” than AIDS, cancer, and diabetes falsely implies that non-autistic children are rapidly being turned autistic.

And if you’re happily married, I will make sure that your marriage fails.

Your money will fall into my hands, and I will bankrupt you for my own self-gain.

How does autism make sure that marriages fail and people go bankrupt? This statement goes beyond warning and even beyond pessimism. This statement artificially injects a sense of certain doom into the situation. It makes no sense to give parents of newly-diagnosed autistic children this false sense of doom at a moment when they are likely to be the most vulnerable.

The line about bankruptcy brings to mind a eugenics campaign from 1926 that states: “Every 15 seconds $100 of your money goes for the care of persons with bad heredity such as the insane, feeble-minded criminals, and other defectives.” An advertisement comparing the intellectually-disabled and mentally-ill to criminals and calling them burdens on society would not go over very well today. Advertisements that characterize autistics as burdens on society should not be accepted either.

I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.

Why is parental embarrassment emphasized more strongly than anything the autistic child is experiencing? By not considering the way the autistic child feels, Autism Speaks again demonstrates lack of understanding and even lack of empathy toward autistic people. Moreover, the way to eliminate embarrassment at autistic behavior is to spread awareness about what autism looks like and what autistics experience. A group that spends 28% of its substantial operating budget on awareness should enlighten the public about autism, not use embarrassment as a threat.

You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.

If these scientists are biomedical researchers, they will not have the resources because they are looking at autism from the wrong vantage point. Curing autism is not on the order of curing polio or smallpox. Autism is a way of being, not a disease that can be separated from the individual with the aid of medical treatment. Curing autism is less like curing a disease and more on the order of curing left-handedness or homosexuality.

Autism is much more than the handicaps secondary to it. There is a huge difference between curing autism and enabling an autistic person to communicate, self-regulate, mitigate sensory distress, and live independently. The former involves eradicating any non-normative individual difference, while the latter allows success in life for people on the autism spectrum.

I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?

These sentences again instill a sense of certain doom on individuals who are likely to at their most vulnerable. Also, the phrase “rob you of your children” implies that autistic people are missing their personhood. This phrase debases and dehumanizes autistic people, and leads to further stereotyping.

And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.

...but apparently not an autistic person.

We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the European Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.

Technology and voodoo and prayer and herbs and genetic studies, but not genuine attempts to communicate with and understand autistics?

We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.

If you love your children, love them for who they are. Understand their weaknesses and strengths. Bestow upon them no unrealistic expectations of success and no unrealistic expectations of failure. Work with them, and listen to them.

Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?

The wall metaphor brings to mind imprisonment imagery used in outdated psychiatry from the early 1900s. Simply put, autism is not a wall that a child lives behind. If you see autism as a wall that is separate from the child, you will not be able to knock down the wall without knocking down the child as well.

You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

From its title onward, “I Am Autism” uses anthropomorphism throughout. Although anthropomorphism can be an effective technique, the anthropomorphism used in “I Am Autism” falls flat by assigning a one-dimensional, villainous character to a very complicated and nuanced way of being. In fact, the entire cast of characters used in this piece is overly simplistic: autism is the villain, the child is a victim, and the parents are the saviors. Even beyond its simplicity, this model is totally incorrect. It separates the autism from the individual, and also undermines the strength of the individual by portraying him/her as a helpless victim.

“I Am Autism” demonstrates a serious lack of understanding of autism, as well as a serious unwillingness to address autism in earnest. The piece discusses how the autistics’ loved ones might feel, but does not address autistics’ experiences at all. This unwillingness to speak to us, and even speak about us, demonstrates that Autism Speaks is not suited to speak for us.

Autistic Community Condemns Autism Speaks' "I am Autism" Campaign

2009-09-24T19:06:00.000-07:00

“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23^rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”

Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html

“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/

“I am Autism Speaks

I will steal your voice and make sure you can never speak for yourself.

I will steal your parents’ money and spend it on a residence on Park Avenue.

I will use demeaning language to degrade, pity and marginalize you.

I have declared war on you.”

Emily (Parent):

http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate):

http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

The Disability, Employment, and Health Care Connection

2009-08-26T18:49:00.000-07:00

(written by Ari Ne'eman for the Huffington Post, Mon 24 Aug 2009)

As the health care reform debate rages, we see a few old familiar chestnuts being dragged from the anti-reform fire. Critics of health care reform have expressed concern that increased government involvement in health care will crowd out existing private-pay health insurance. The idea is that when public funds are used to increase the availability of health insurance coverage, people will have a disincentive to pay for private coverage out of their own pocket and to work hard so as to be able to afford to do so. Similar objections were raised to the expansion of the State Children's Health Insurance Plan (S-CHIP), twice vetoed by President Bush and signed by President Obama as his second piece of legislation after being inaugurated. Yet for all their concern about disincentives when it comes to buying private health insurance, critics of health care reform fail to mention another kind of health care related disincentive -- the kind people with disabilities face when wanting to work.

For most Americans, employment is a vehicle for health insurance coverage, not an obstacle. For those lucky enough to have employers who provide health insurance, the connection is simple. For those whose employers do not provide coverage and who do not qualify for any government program, the only option is to hope that they can earn enough to purchase coverage on the expensive individual market. However, for many people with disabilities, the individual market for health insurance is not an option, due to the exorbitantly high premiums, exclusions on coverage for certain necessary treatments or even outright refusal to sell a policy to those with "pre-existing conditions."

This leaves prospective workers with disabilities in a horrible dilemma. For the majority of people with disabilities who cannot find entry-level work that provides health insurance, government programs are the only option. Yet, Medicaid's asset and income limits prevent many workers with disabilities from qualifying. Taking a job that pays enough to live on means losing access to health care coverage. Even as we have attempted to open the door to employment and community integration for people with disabilities through laws like the Americans with Disabilities Act and the Individuals with Disabilities Education Act (IDEA), insurance discrimination and lack of affordable health care serves to keep that door closed for too many.

Work is a crucial part of our lives. It helps define our identities, our social circles, our role in society, what we do with most of our time and our sense of self-respect. Indeed, one of the areas of common ground that disability rights advocates and conservatives share is a respect for the fundamental dignity of work. Yet, despite this, critics of health care reform give no consideration to this issue. They forget about the large percentage of the disabled population in this country that remains caught in a bureaucratic nightmare preventing even those capable of finding and holding employment from doing so for fear of being left without health insurance.

Maria is a 34-year-old elementary school teacher in South Florida with rheumatoid arthritis. To save money, her school recently announced a change to a new health insurance plan that will not cover the medication that keeps her condition manageable. Now she is faced with the impossible task of paying thousands of dollars a month out of pocket on a teacher's salary or quitting her job to qualify for public health insurance that will cover her treatments.

Ronald is a 26-year-old Autistic adult living in the Midwest. He wants to accept a job offer at a local small business, but the additional income would exceed the income limits on his Supplemental Security Income (SSI) payments, through which he qualifies for Medicaid. The small business can't afford to offer health care, so while he is willing to forgo the cash payments from SSI, he cannot afford to purchase his own insurance on open market. Even though Ronald isn't on any medications, he may still face prohibitively high premiums for the "pre-existing condition" on the individual health insurance market. Because of this and because his state doesn't yet allow people in his situation to buy into Medicaid, if he accepts the job offer he will be left without health insurance. He is thus forced to turn down the job and look for volunteer opportunities to pass the time instead.

Amy is a 22-year-old with a spinal cord injury living in North Carolina. She is currently in graduate school but worries about what will happen when she graduates. Tricare, the insurance program that covers members of the military and their dependents, pays for the attendant care she needs to continue living independently. Private insurance won't cover her and once she finds employment and is no longer listed as a dependent on her parents' insurance, she'll lose the assistance that makes it possible for her to get up in the morning, go to work and perform other activities of daily living. She is caught in a vicious catch-22. If she goes to work, she will lose the assistance that makes it possible for her to work and live independently in the first place.

While these people's names have been changed, their stories are real. This is not just the plight of a few people. This is the reality faced by millions of adults with disabilities who don't want to have to choose between getting health care and holding a job. According to the Government Accountability Office, there are approximately 11 million Americans on Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Bureau of Labor Statistics data show that only 23% of people with disabilities are participating in the labor force as compared to almost 72% of people without disabilities. While not all people with disabilities would be able to find and keep employment, a significant percentage of them can and want to, yet cannot do so by reason of discrimination, lack of support and bureaucratic obstacles -- particularly around health care. Is this fair? Is this just? And let us not forget, is it good for our country to keep so many Americans out of employment due to lack of affordable health care coverage with decent benefits? The answer to all of these questions is a resounding no.

Now, we must be realistic. The health care reform proposals on the table aren't perfect. People with disabilities are left out of many of the provisions around addressing health disparities, an issue erroneously assumed to only be relevant for racial and ethnic minorities. We have yet to see meaningful action in any of the bills on the table to address Medicaid's bias towards institutions and nursing homes instead of community living options that bring more quality of life. These are issues that must be rectified in one form or another before the final legislation comes together. However, such problems are fixable. Beyond that, there is much in the House and Senate HELP legislation that promises to radically improve the picture for people with disabilities. An end to discrimination and higher premiums for those with pre-existing conditions would drastically improve the opportunities for people with disabilities to buy health insurance in the individual market, thus removing one of the biggest obstacles in entering the labor force. A minimum benefits package that all health insurance plans must honor will keep more Americans from facing the dilemma now before Maria and countless others.

Think of the potential benefits - measured in both quality of life and new taxpayers - from millions of current SSDI/SSI recipients finding employment. Senator Tom Harkin, the chief co-sponsor of the Americans with Disabilities Act and a man often referred to in disability rights circles as the "great emancipator" for people with disabilities, often points out that people with disabilities are one of the few groups that want to pay taxes, as doing so will indicate that the barriers to the world of work have been broken down. Indeed, many of health reform's most ardent critics should know this already - after all, disability rights advocates are not the only ones who talk about work incentives and public benefits. Conservatives pioneered that conversation and should not forget about it in reference to disabled adults and health care. As long as we continue to see delaying tactics rule the day when it comes to passing comprehensive health care reform, millions will remain caught in a bureaucratic trap that makes no one happy. Enough delay -- we need health care reform now.

ASAN New England Meeting

2009-07-24T20:33:00.000-07:00

The New England Chapter of ASAN will have its next monthly meeting from noon to 2pm on Saturday, 01 Aug 2009 in the Lucia MAstrangelo Room of the Watertown Free Public Library. This meeting is free and open to the public. In order to get an accurate attendance estimate, please respond to asannewengland AT hotmail DOT com if you plan to attend.

The Watertown Library is located at 123 Main St, Watertown MA 02472-4401.

Why We Oppose CADD

2009-07-05T05:15:00.000-07:00

At our last meeting, one of our members asked why ASAN puts so much effort into opposing CADD and groups that support it. If we bring people's attention to CADD, wouldn't that lend credence to it? Also, is CADD even that much of a threat to the Asperger’s community? Short answer: CADD, and groups who promote it, are advocating discrimination against people with AS solely based on our neurology, and we cannot stand for that.

Long answer:

Maxine Aston asserts that an AS/non-AS relationship causes the non-AS partner to suffer from a depressive condition, which she calls "Cassandra Affective Deprivation Disorder", or CADD. CADD is described as being caused by “a lack of empathetic thought”, although recent research into autistic empathy demonstrates that people with AS experience above-normal levels of personal distress when observing distress in other individuals. Ms. Aston has conducted no peer-reviewed research to support her claims, and this purported "disorder" has never been recognized by any professional association. Moreover, no research into CADD has ever been conducted in compliance with institutional review procedures, and the uniqueness and significance of CADD symptoms has yet to be verified.

CADD is named after Cassandra, a psychic in Greek myth whose predictions were not believed. The reason behind this naming is because the CADD sufferer (invariably female, and invariably non-AS) is not believed by the public when she airs her grievances about her significant other. Aston goes to lengths to describe the AS man as being one person in public and another in private, and implies that many men in the relationships tend to be "drawn to such women whom they try and control". However, even if we assume these statements are verifiable, the duplicitous, controlling behavior they describe is not traditionally considered ASD-related.

Ironically, in the myth, Cassandra was the recipient, not the sender, of unrequited love. Yet somehow, Cassandra's male counterpart (Apollo in the myth, the AS man in the CADD model) is seen as the one not returning affection. Think about this a moment.

One major proponent of CADD is Families of Adults Affected by Asperger's Syndrome (FAAAS), which extends the CADD model to family members other than spouses. FAAAS claims that people with Asperger's are the source of family problems, referring to CADD as “the pathologization of the individual without the dysfunction”. Instead of making a reasonable effort to understand the needs and concerns of AS individuals, FAAAS' founder, Karen Rodman, claims that AS individuals’ difficulties are caused by inconsequential matters and are “without rhyme or reason”.

Although groups such as FAAAS do not explicitly condone physical violence or other extreme techniques traditionally used by hate groups, they still have the potential to wreak significant damage through the legal system. By making broad negative generalizations about people with Asperger's, dismissing our needs, and characterizing us as irrational and violent, FAAAS and similar groups promote systematic discrimination against AS individuals. These stereotyping and scapegoating approaches are very similar in form to the claims made by hate groups.

The funny thing about FAAAS' reasoning is that an non-AS individual’s negative reaction to their AS family member's behavior is blamed on the AS person’s behavior, but the AS person's negative reaction to their non-AS family member is blamed on the AS person's rigidity. This double standard is not fair to the AS individual or to any other human being.

Even disregarding FAAAS and their role in promulgating CADD, the CADD approach itself is a form of ad hominem attack. This attack does not focus on anything specific that the AS individual does; instead, it attacks the AS individual as a person. The AS individual will think: should I be independent, and risk being viewed as cold and unloving, or should I be dependent, and risk being viewed as needy and childlike? This no-win position feels overwhelming and insurmountable to the AS individual, who realizes that he/she will always be judged based on his/her neurology regardless of his/her actions. Fortunately, attacks of this type invalidate themselves because they do not concern the facts at hand, but unfortunately they tend to carry a hefty emotional payload.

Even though bringing attention to CADD-promoting groups may possibly lead people to take CADD seriously, it is the role of all individuals to stop CADD and similar ideas from propagating, because these ideas are borne out of ignorance. The more people see AS individuals as human beings, and judge us on our actions and character and not on our neurological type, the less chance CADD has of spreading.

ASAN-NE discussion

2009-06-18T20:18:00.000-07:00

This post is a public suggestion box. If you have suggestions for ASAN group actions, please post a comment in response to this message.

For private comments and suggestions, please e-mail asannewengland AT hotmail.com. If you wish to take part in an active private discussion concerning ASAN New England actions, you may also contact asannewengland AT hotmail.com to request to be added to the private discussion list.

First Monthly Meeting

2009-06-14T11:31:00.000-07:00

The New England Chapter of ASAN will have its first monthly meeting from 2pm to 4pm on Saturday, 27 Jun 2009 at the Watertown Free Public Library in Watertown MA. The meeting will take place in the Lucia Mastrangelo Room.

This meeting is free and open to the public. In order to get an accurate attendance estimate, please respond to asannewengland AT hotmail DOT com if you plan to attend.

The Watertown Library is located at 123 Main St, Watertown MA 02472-4401.

Tell Dr. Tony Attwood to End the Hate: Autistic People Deserve Equality in Family Law and Relationships

2009-04-19T06:58:00.000-07:00

Hello,

I'm writing to ask you to sign our petition, calling on Dr. Tony Attwood and Dr. Isabelle Hénault, two respected experts in the world of Autism, to disassociate themselves from hate groups promoting stereotypes and libels that seek to encourage discrimination against Autistic people in family law and relationships. We in the disability community have long suffered from many forms of discrimination, stereotyping and discrimination. Historically, one of the most pervasive forms of this type of discrimination has come from those who use stereotypes and psuedo-science to try and deprive us of one of the most common ways of expressing membership in the human community - the right to have a family, to marry and to raise children on an equal basis with any other citizen. The eugenics movement is one of the most well known examples of this dangerous and unethical means of discriminating against people with disabilities, as is the related idea that disabled people are inherently unfit as spouses or parents. In the name of these kinds of stereotypes, people with disabilities have been deprived of parental rights and discriminated against in divorce and child custody cases for generations. In the Autistic community, we face opponents who seek to propogate these same forms of hatred, often claiming to do so either for our own good or wrapped in the guise of the same types of false science that justified the involuntary sterilization of hundreds of thousands of individuals worldwide who were deemed unfit to raise children.

For the last decade, groups like Families of Adults Afflicted with Asperger's Syndrome (FAAAS) have been promoting the idea that prolonged family contact with Autistic adults in romantic or family relationships is harmful to "normal" people. Amongst other methods, they have done this by promoting "Cassandra Affective Deprivation Disorder," a term invented by British psychologist Maxine Aston. Cassandra Affective Deprivation Disorder, a condition developed by Aston and which serves as the basis for much of her marketing and income, is claimed by Aston to be a depressive disorder caused by romantic involvement with an Autistic person. CADD is based entirely upon pseudoscience, personal grudges, and stereotypes rather than any form of accurate research or evidence. CADD has never been recognised by any psychological association and is not supported by any peer-reviewed scientific research. Aston and others involved with such groups have purported to diagnose clients with CADD, despite having no legitimate authority for doing so. In CADD support groups, clients are encouraged to "vent" about the failures of their partners and to characterise Autistics in general as unsuitable for family life.

Attwood and Hénault have, despite respected professional activities and scholarships in other contexts, consistently appeared and promoted Cassandra-related events and organizations. Over the past decade, both Attwood and Hénault have been regular presenters at events sponsored by FAAAS, which actively promotes the Cassandra concept. Attwood and Hénault are closely associated with FAAAS through their membership in the FAAAS Professional Advisory Panel. The founder of FAAAS, Karen Rodman, has publicly described Autistics as randomly violent and has suggested that Autistic children ought to be excluded from public schools. Through its activities, FAAAS has sought to influence social workers and family law courts to make biased decisions removing custody of children from Autistic parents and discriminating against Autistic adults in other family law contexts, as detailed in a paper by FAAAS member Sheila Jennings Linehan, who also has levied this libel against other neurological disability groups. Several articles by ASPIA, a group in Australia with the same goals and objectives as FAAAS, founder Carol Grigg appear prominently on the FAAAS website, and the content of Grigg's articles clearly shows that she also promotes the false accusation that autistic people and others with disabilities are likely to abuse their family members. She explicitly makes this claim in an article entitled Asperger's Syndrome in Adults: Potential for Abuse?

Though Autistic adults now face discrimination in family law settings, all credible research on the topic states that Autistic people are far more vulnerable to being abused than the general population and have no natural predisposition towards abusive behaviour. By promoting a libel that places Autistic people at a disadvantage in family law contexts, FAAAS, ASPIA and other promoters of CADD have decreased opportunities for Autistic people to seek protection against abuse. Due to the presumption of fault promoted by these groups, Autistic adults are at risk of being discriminated against if they attempt to terminate abusive marriages and other relationships. Furthermore, these libels threaten the rights of Autistic people and all people with disabilities to fully participate in society by marrying, having children and enjoying the right to be judged on the basis of ones actions not by ones medical diagnosis.

We're asking you, regardless of your background or interest in Autism or cross-disability issues, to join us in signing this petition to help secure the rights of all people to be treated equally under the law. Our petition can be found at: http://www.ipetitions.com/petition/AttwoodHenault/ and if you are interested in e-mailing directly tony@tonyattwood.com.au is the e-mail address for Dr. Attwood and ihenault@internet.uqam.ca is the e-mail address for Dr. Hénault. Thank you for your support. Together, we can mobilize our community and stop discrimination wherever it rears its ugly head.

As always, Nothing About Us, Without Us!

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

No Myths Autism PSA: A Different Kind of Autism Awareness

2009-04-16T16:28:00.000-07:00

This April, the "No Myths" public service announcement offers a different kind of autism awareness—one that offers a realistic view of the autistic population, instead of stereotypes and myths. ASAN President Ari Ne'eman has issued the following statement about the PSA and encourages viewers to make others aware of it as well:

ASAN worked with the Dan Marino Foundation and Kent Creative to develop the following autism PSA. Take a look, tell us what you think and please spread the word with blogs and outreach.

Youtube link: http://www.youtube.com/watch?v=Y_dPZDcX_ck
Captioned Version:
http://www.overstream.net/view.php?oid=udtvrbt0rlao

Go to www.NoMyths.org to learn more. This PSA is brought to you by the Autistic Self Advocacy Network (http://www.autisticadvocacy.org), Kent Creative (http://www.kentcreative.com/) and the Dan Marino Foundation (http://www.danmarinofoundation.org/).

About the Public Service Announcement:

The "No Myths" PSA offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way. Ari Ne'eman, president of the Autistic Self Advocacy Network, leads a cast that includes {in order of appearance} Dena Gassner, Ben Liske, and Jacob Pratt.

The Dan Marino Foundation of Weston, FL sponsored the piece, which was filmed by Nashville-based Kent Creative. Jon Kent directed the PSA and Britt Simmons was the Director of Photography.

"No Myths" was filmed inside the Parthenon in Nashville, TN. The Nashville Parthenon, which was built in 1897, is a full-scale replica of the ancient Greek Temple. The two bronze doors, used as a symbol throughout the PSA, weigh 7.5 tons each, and are thought to be the largest pair of matching bronze doors in existence. The producers wish to thank Citation Film Support and the Filmworker's Club of Nashville for their generous support of this project.

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530