November 17, 2013 — The Asperger’s Association of New England (AANE) has until now refrained from commenting on the activities of other organizations that serve people with autism spectrum conditions and their loved ones. Following the most recent description of autism and its impact on families by Autism Speaks co-founder Suzanne Wright, it is time to break that silence. In the last few days, the Autism Speaks leadership has been roundly and justly criticized by autistic self-advocates and allies for its continued portrayal of autism as a tragedy, an epidemic, and a catastrophe. This framing is unnecessary and destructive to autistic people and their families.
Often when parents first come to us they are frightened and worried. They do not know how to handle their current challenges or what the future holds for their children. Many are in a state of crisis. But nobody can live in a state of crisis indefinitely. We aim to help normalize their experience. Parents benefit from strategies, information and community, and from seeing that they and their children can cope. Family life will be different in some ways from what they expected, as will their own parenting. There might well be tough times, but there will also be good times, times of deep bonding, welcome realizations, the easing of challenges, and insight into each other’s strengths and spirit.
How do we know this? We know this because we serve people across their lifespans. In our seventeen years of existence we have watched young children grow to young adults. But it is more than that. We have always served adults, including people who did not receive their diagnosis until middle-age. Like all of us, they stumble, they succeed, and they grow. Over and over, we see adults achieving in ways their parents often did not anticipate. To some extent (albeit too slowly), the world grows with them. It is our task to speed that process.
Adults with Asperger’s and autism have shared their stories with our families and professionals and have been integral to developing the mission and goals of AANE. Since our founding, they have served on our board of directors (not in the numbers we would like, but we’re continually working on it). Adults with Asperger’s and related conditions, as well as family members and professionals, oversee the fiduciary, strategic planning, development and governance of AANE, and give their time to committees addressing legislative advocacy, employment, programming and more. Our staff includes autistic adults, parents and siblings.
This diverse input has led us to these core values:
People with Asperger’s syndrome and related conditions deserve respect and validation. They should have access to supports that will allow them to use their talents and skills in the manner they choose. Our society’s institutions must adapt to fully include them. Collaboration between adults on the spectrum, family members, professionals and other allies is essential to making meaningful change.
We call on the non-autistic world to reach out to autistic people of all ages — to hear and understand them, work with and invest in them, support, love, cherish and celebrate them.
By AANE staff
July 22, 2013 — We need your help! Please ask legislators to support the bill prepared by AANE that would ensure equal access to services from the Department of Mental Health for people who have autism and a mental health condition. Here’s how to do it.
Do you or someone you know have autism, Asperger’s or PDD-NOS and a mental health condition (e.g., bipolar disorder, severe anxiety or depression)? Do you care about people who do?
- People with autism are denied support from the Department of Mental Health, even if they also have a mental health condition. This is discriminatory.
- The Autism Commission of Massachusetts says access to DMH services is a top priority for people with autism
- The state legislature is considering a bill prepared by AANE that will ensure equal access to DMH services for people who have autism and a mental health diagnosis. For information about the bill, see the cheat sheet.
Below is a letter template for writing to the legislative committee that is handling this bill, and guidance on using it.
If you prefer not to use the letter template, write a brief statement (1 or 2 paragraphs) in support of this bill. See the samples below. Then email your statement to firstname.lastname@example.org. We will put it into letter format and include it in the packet of written testimony.
Questions or comments? Email email@example.com
How to use this letter template
- Copy the template (below) into an email or document.
- Include a few lines saying why the bill is important. Draw on your personal story if you want to, or be more general. You can use the information in this blog post and fact sheet.
- Email your letter to firstname.lastname@example.org. We will add it to the packet of testimony and make sure it gets to all members of the legislative committee.
- Email the letter to your own state rep and senator. Find out who they are here. Tell them you live in their district and would like them to support this bill at every opportunity.
Senator Joan Lovely and Representative Elizabeth Malia, Chairs
Senator Katherine Clark and Angelo Scaccia, Vice-Chairs
Senators Kenneth Donnelly, Richard Ross and James Eldridge
Representatives Ruth Balser, Denise Garlick, Paul Heroux,
Shaunna O’Connell, Dennis Rosa, Carlos Henriquez, and Randy Hunt
Joint Committee on Mental Health and Substance Abuse
Boston, MA 02133
Honorable Members of the Committee,
H1794 and S909 An Act to ensure full and equal access to services from the Department of Mental Health for individuals with Autism Spectrum Disorder and related conditions who meet the eligibility criteria for the Department of Mental Health Services
[Your story or observations relating to why this bill should be passed: take as much or as little space as you like]
I ask you to favorably report this bill from committee and support its passage in the legislature.
Sample statements on the DMH bill (these are fictional examples)
I am 78 years old and in poor health, and am the sole the carer for my grandson Peter, who is 21 and has Asperger’s syndrome, mood disorder, learning disabilities and severe anxiety disorder. His school psychologist called him “marginally functional”. He needs assisted living, life skills and employment guidance, and psychiatric treatment. I have spent nearly all my savings to pay for Peter’s care and when he turns 22 and his educational rights are temrinated I’m afraid we will both become homeless.
Peter’s recent application for DMH was refused because he does not have a covered “mental health disorder.” It is not right that if he didn not have the Asperger’s diagnosis he could get help, but because he has it, he can’t. This is discrimination against people with autism and their families. Please help us by supporting H1794 and S909 and assuring Peter can get essential mental health support.
123 Main Street
I am 25 and living at home with my dad. I can’t keep a job, because I have bipolar disorder as well as high functioning Asperger’s and even though I do quite well in computer jobs for several months, there always comes a time that something is too difficult or stressful for me to manage, and I don’t have any support or guidance when I need it. My dad used to help me take my medication but he is sick himself now.
My life is miserable because I’m just sitting at home with nothing much to do except use my computer. I would love to be able to benefit from the DMH Clubhouses so they could help me find work with a supportive employer and a doctor to help me manage my medications. I hope you favorably report H1794 (or S909) so people like me can access this kind of service and be able to work and live independently as we would like to.
10 Elm Street
Questions or comments? Email email@example.com
Cheat Sheet on the DMH bill
# 2 recommendation of the MA Autism Commission (of 12 top priorities)
What is this bill?
An act to provide equal access to services from the Department of Mental Health (DMH) for people who have autism and a serious, persistent mental health condition. It was filed in the House and Senate with identical language: H1794 & S909. It was prepared by the Asperger’s Association of New England and filed in the House by Representative Kay Khan and the Senate by Senator Jennifer Flanagan. Thanks in large part to the involvement of AANE members, the bill has 84 sponsors in the legislature. Read it here.
How important is this bill?
DMH currently denies mental health services to people with an autism diagnosis, even if they also have a qualifying mental health condition. This is discriminatory. This bill is vital to ensuring that autistic people who meet existing DMH eligibility criteria can access vital services.
Why are they denied DMH services?
DMH denies services to this population, citing autism as the “primary” diagnosis. “Primary diagnosis” is not a clinically meaningful concept. Like a person who has a broken leg and flu, and needs treatment or accommodations for both, autistic people who have bipolar disorder, severe anxiety or another mental health condition need support with that too. Alternatively, some autistic people avoid an autism diagnosis in order to access mental health services, which means they are not receiving adequate support around their autism.
What is the impact of this denial on individuals, families and the state?
Children and teens are less likely to succeed at education, life skills and transitioning into the workforce. Adults’ chances of self-sufficiency and employment are greatly reduced, even if they have marketable skills. Many parents are forced to leave the work force to care for their dependent sons and daughters (of whatever age). These families are at high risk of financial hardship, including home foreclosure, and tend to end up on public assistance. The state picks up the direct and indirect costs of the denial of services.
Would DMH services help?
In rare cases, autistic people have received DMH services (because of a court order or multiple hospitalizations, or because their autism diagnosis came later) and we have seen that relatively minimal support can make the difference between dependence and self-sufficiency, both for individuals with autism and their parents. Appropriate services include case management, mental health care, preparation for the workplace and Clubhouse (employment) support.
Who supports this bill?
A large statewide coalition including the Asperger’s Association of New England (AANE), the Arc of Massachusetts, the Cross Disability Advocacy Coalition and other autism and disability organizations. They have large, active memberships (AANE: 20k).
For more info, email firstname.lastname@example.org
By Erika Drezner, AANE staff
When I first heard about the new FX TV show The Bridge, I was intrigued by its premise of a murder mystery set on the Bridge of the Americas, which marks the US-Mexico border. I was further intrigued when I learned that one of the lead characters, an American detective named Sonya Cross, has Asperger’s syndrome.
Reviews of the show have been somewhat mixed but largely positive. The show’s writing, pacing, setting and most the performances have been lauded. Of what criticism there is, most has been reserved for Sonya Cross and the actress who plays her, Diane Kruger.
Reviews have described Kruger as miscast, claimed that she “seems less like a woman on the spectrum trying to pass as a border cop than a Euro-cyborg trying to pass as a human.” They have called the character “a female Spock.” Kruger has defended her portrayal, noting that the show has employed a consultant on Asperger’s—WrongPlanet.com founder, Alex Plank.
There has been criticism within our AANE community. A commentator on our Facebook page wrote: “Disappointing. It’s like they looked up every single stereotype and made sure the female protagonist exhibited them all.” But I was most struck by this from Eileen Riley-Hall, author of the book Parenting Girls on the Autism Spectrum (Jessica Kingsley): “I found this show unbelievably offensive. The character has no empathy (thanks to FX for reinforcing that horrible and untrue stereotype), is rude, robotic, and lacks any human emotion. That is NOT how someone with Asperger’s behaves. Yet, another damaging portrayal of our loved ones.”
As a professional who works with people with Asperger’s and related conditions and has two children with diagnoses on the Autism Spectrum, I had mixed feelings about Sonya. In the pilot episode, when she questions the husband of a murder victim, she is awkward at best. But it didn’t seem to me that she was unaware of the husband’s grief or that she didn’t care about it. More, she just didn’t know what to do about it, and was dedicated to finding the wife’s killer.
Sonya is guided by her boss on workplace issues that befuddle her. Their relationship is one of the most positive aspects of the show. Many people on the Autism spectrum would benefit from a mentor in the workplace. But it seems that he could do a better job. Instead of just reminding Sonya to make eye contact with the widower, he could have taught her more strategies for dealing with these kinds of issues. Of course, intensive coaching sessions on social pragmatics don’t make exciting television — and neither, perhaps, do characters with Asperger’s when the manifestations are subtle.
Additionally, Sonya seems to suffer from a malady that plagues many tough career-oriented women on TV: she seems like a man. This, I think, is why the show sits so poorly with Ms. Riley-Hall and others who are so familiar with girls and women on the spectrum. Reviewers have compared Sonya to Carrie Mathison, the CIA analyst played by Claire Danes on the Showtime drama Homeland. Both women are obsessively devoted to their jobs. Their male colleagues have families, but neither Carrie nor Sonya possesses much in the way of emotional connections outside of their work, and both incline towards random sexual hook ups with strangers at bars. In the second episode of The Bridge, Sonya bluntly propositions a man at a bar, brings him home for sex, and promptly falls asleep after intercourse. After watching this scene at home, my husband turned to me and said, “She’s a total guy.”
And maybe that’s the problem: popular culture has not figured out a way to write tough women who aren’t men. I can say that Sonya Cross doesn’t really remind me of the women on the spectrum I know, including my own daughter, but she does seem more like some men I know—Autistic and NT alike. That said, I have not given up on the show. Sonya’s back story has only been hinted at. She has clearly lost a beloved sister to what appears to be foul play. It seems that loss is a great part of what is driving her. We have already seen that she is quite attached to a truck that belonged to her sister and it appears that the jacket she wears everyday may have as well. I am eager to see how much of Sonya’s difficulties stem not just from her diagnosis, but from her life experiences. I hope that the show will delve further into what life is and has been for Sonya, so that she can move from “Euro-cyborg” to a fully fleshed out character.
Photo: Frank Ockenfels/FX