April 12, 2013 — Local poet Scott Lentine is celebrating Autism Awareness & Acceptance Month with a burst of literary and self-advocacy activity. Between writing poems and working for the Arc of Masschusetts, he is advocating for Ben & Jerry to develop a new autism-themed ice cream (yay!), and participating in next month’s All Aboard the Arc fundraiser, which supports people with intellectual and developmental disabilities. Check out his poem, Can’t You See, below.
Scott, whose blog is dedicated to the impact of autism on his life, is a master of generating dialogue around his work, especially among the authors, musicians and other public figures he admires. In the last few months, he says, “I have gotten positive reception on the poems from author Elizabeth Searle, John Sebastian of The Lovin’ Spoonful, folk singer Tom Rush, Jesse Colin Young of The Youngbloods, Dave Wakeling of The English Beat and General Public, Slate columnist Emily Yoffe, novelist Ayelet Waldman, and WBUR anchor Sacha Pfeiffer.” Evan Wolfson, founder of Freedom to Marry, the national marriage equality campaign, also enjoyed Scott’s poems, appreciating the challenges faced by autistic people.
Can’t You See
Can’t you see
I just want to have a friend
Can’t you see
I need the same connections in the end
Can’t you see
I want a good job
Can’t you see
I need to have stability and dependence and part of the general mob
Can’t you see
I want to be independent on my own
Can’t you see
I want to be able to have my own home
Can’t you see
I want the same things as everyone else
Can’t you see
I want to be appreciated for myself
March 18, 2013 — Tufts researchers are recruiting for a focus group on health insurance. We’d like to include people with autism and other conditions. Please forward the link to anyone you know who might be interested.
Are you an adult who doesn’t have health insurance, or didn’t until recently? Could you maybe take part in a Boston focus group in April? Everyone who takes part will get a meal and a $10 gift certificate to a local supermarket. If you know someone who might be interested, please send them the link to this post.
What does it involve? You’ll be part of a group of 7-9 adults in a meeting room. We’ll show you cards with words and pictures that explain health insurance words and terms (like premium, subsidy, and copay). We’re not testing the people who take part — we’re testing the cards. There are no right or wrong answers. We’ll be discussing whether the cards make health insurance easier to understand, and how they can be improved.
Where? The location will be in Greater Boston at the most convenient site we can find.
When? A morning, afternoon or evening in mid-April. The date and time will depend on what works for people taking part. The focus group will take 90 minutes
Will I get paid? Everyone who takes part will receive a $10 gift certificate to local supermarket. We’ll provide pizza and beverages. We’ll pay your costs getting there and back on the bus or T. If you need childcare at the same location, we’ll provide it.
Any other benefits? You might learn more about health insurance and how to enroll yourself and your family. We’ll refer you to people and organizations who can help you enroll, if you want that.
Will I be identified? We’ll use first names only (real or fake).
Do I qualify to take part in the focus group?
Yes, if you answer YES to the following questions
- Do you currently lack health insurance, or did you lack health insurance for at least 1 year out of the last 5 years? (For at least 6 months in a row.)
- Did your formal education end at high school or sooner?
- Are you age 18 or over?
- Do you have a working knowledge of English? (You don’t have to be fluent)
What is this for? The researcher is a graduate student at Tufts University School of Medicine. She is working with Enroll America, an organization that helps people get health insurance. When the cards are finished they will be available to people and organizations who can benefit from them.
Where can I get more info, without obligation?
Lucy, researcher, 617 969 1533 or 617 359 7556, firstname.lastname@example.org
By Erika Drezner, AANE staff
March 5, 2013 — Thomas Insel, director of the National Institute of Mental Health, recently blogged about the fissures within the autism community. In a post called The Four Kingdoms of Autism he divides us into four categories (those “kingdoms”), which he calls Illness, Identity, Injury and Insight. (We’ll get to these below.)
Autism has a way of both demanding and defying categorization. “Part of the polarization and confusion around autism results from heterogeneity,” writes Insel: “the diagnosis of autism now applies to a 5-year-old who has no language, a 20-year-old computer science student at MIT who is socially awkward, and a 40-year-old parent who has no interest in social interaction. ‘Autisms’ may be a better descriptor of the broad spectrum of social and behavioral traits now subsumed under a single diagnosis. There is, in fact, no typical autism.”
It is interesting that Insel makes this point now, with less than three months to go until the release of the DSM 5, in which the categories Asperger’s, Autism and PDD-NOS will be subsumed into Autism Spectrum Disorder.
Insel sees these Four Kingdoms as reflecting in part the level of disability of those they represent. The “Identity kingdom,” he says, is largely made up of people who we often call self-advocates: “young adults with a past or current autism spectrum diagnosis who can live independently but who face a range of challenges in what they describe as the ‘neurotypical’ world.” The Illness kingdom is peopled with parents whose “children are severely disabled by the core symptoms of autism and by immune dysfunction, gastrointestinal symptoms, and seizures.” (In the Illness kingdom, we have those who see autism as caused by physical injury. For the citizens of Insight, autism is an opportunity to understand and explore the brain.)
The Identity and Illness kingdoms represent an alternative set of two camps, high functioning and low functioning. These terms are used frequently, as if their meanings were obvious, and are controversial. (People have written about the autism community’s near obsession with defining people as either high or low functioning.) Insel is right that the heterogeneity that exists in the community leads to confusion. But his argument is strongest when he insists on that heterogeneity. Even the authors of DSM-5 appear to be aware that there is no typical autism, using “spectrum” to describe these conditions and incorporating severity scales. Perhaps the fractious community can agree on one thing: that there are many different autisms.
Even if we accept that, the future is likely filled with conflict. With many autisms come many agendas. I have heard parents of “high functioning” young people worry that their children’s needs will be overlooked in the DSM-5 world because they will be seen as having “mild” autism. Similarly, parents of “low functioning” children worry that their children will be viewed as having less potential and will receive fewer resources. And those concerns barely scratch the surface. Moving on, should our financial investment in autism go to research, treatment, services, or to advocating for civil rights?
If we really are talking about autisms, should the various conditions have separate organizations with different objectives and funders? Can we foresee a future in which the autism organizational world looks more like the cancer world does now (not to sign on to the disease model, but to accept an umbrella term that covers many different conditions)? Currently, scientists do not know enough about the conditions we call autisms to know what makes them different — beyond the apparent differences in functioning. So for now, we are stuck in the big tent together. The question is, can we live together peacefully?
January 27, 2013 — A week ago, a piece of legislation prepared by AANE was filed by Rep. Kay Khan and Senator Jennifer Flanagan. This fact sheet explains the goals and context of the bill. Please use it to advocate for this bill with legislators, disability organization and other allies in MA. We are urgently seeking co-sponsors for this bill in the State House and Senate: before February 1, please ask your legislators to co-sponsor it.
An Act to Ensure Full and Equal Access to Services from the Department of Mental Health for Individuals with Autism Spectrum Disorders and Related Conditions who Meet the Eligibility Criteria For DMH Services
House docket number HD01658
Senate docket number SD00781
Lead sponsors Representative Kay Khan, House Chair of the Joint Committee for Children, Families and Disabilities; Senator Jennifer Flanagan, member of the Autism Commission.
This bill addresses one of the two most urgent recommendations of the MA Autism Commission.
Goal This bill would establish that people with autism can receive DMH services if they meet the eligibility criteria: that is, they have a serious co-occurring mental health diagnosis. DMH practice currently excludes people with autism from receiving mental health services, a discriminatory approach that denies vital treatment and support to the small proportion of our population with critical needs. In the rare cases in which autistic people have received DMH services (because of a later autism diagnosis, a court order or multiple hospitalizations), we have seen that relatively minimal support can make the difference between dependence and self-sufficiency. [A potential friendly amendment to this bill might broaden it to cover any other diagnoses that DMH routinely excludes, if we can establish that need.]
Background The Massachusetts Special Commission Relative to Autism, chaired by former Rep. Barbara L’Italien, has been meeting since December 2010. The Commission was charged with identifying gaps in services for autistic people and facilitating their participation in society to the fullest extent of their ability and desire.
AANE role The Autism Commission includes two members of the Board of Directors of the Asperger’s Association of New England (AANE), and its Executive Director. Based on the Commission’s draft recommendations (soon to be published), the AANE has identified two legislative priorities and established an Advocacy Committee to promote them.
Our constituency This bill is supported by a large state-wide constituency. The AANE database includes 20,000 people, including folks with Asperger Syndrome or a related condition, and their families, clinicians and other allies. The overwhelming majority live in Massachusetts. This bill has the endorsement of the Cross Disability Advocacy Coalition and is likely to be endorsed by other statewide disability organizations.
AANE Board of Directors; Chair, AANE Advocacy Committee