Robert DeNiro’s recent decision to pull a documentary film from the prestigious Tribeca Film Festival has been in the news. DeNiro rightfully rejected the film, stating he does not “….believe it contributes to or furthers the discussion I had hoped for.” The discussion he refers to is the now debunked theory that childhood vaccines cause autism. The timing, just before World Autism Awareness Day on April 2 and Autism Awareness Month, is a reminder of the intense focus most fundraising efforts have had on discovering the cause of autism and finding a cure. While well intended, viewing autism mostly through the medical lens of diagnosis and treatment, has become offensive in recent years to advocates who would much prefer to be accepted for who they are rather than to be “treated” or “fixed” as if they have a disease. If we are to find a “cure” for what we now term Autism Spectrum Disorder, author Steve Silberman says, “The cure is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children’s potential.” Silberman and others, such as the leadership of the Autistic Self-Advocacy Network (ASAN), advocate for national recognition of Autism Acceptance Month in April, instead of Autism Awareness Month. The debate reflects a growing awareness of the need for capacity building within the community at large for acceptance and accommodation of people with autism.
This issue of Council Connection explores the debate with an interview with Ari Ne’eman, President and Co-founder of ASAN, and a nationally and internationally known leader in the autism advocacy movement. To elaborate on points Ne’eman raises, we provide several links to thought-leaders on the forefront of the conversation. Next, an interview with Maryland’s own Rebecca Rienzi of Pathfinders for Autism, brings the role of an “acceptance” based model home with grassroots efforts to build capacity for supportive communities. Finally, find a listing of upcoming webinars, opportunities, and events you don’t want to miss.
Awareness or Acceptance Month, or both? Autistic or person with autism? Why does it matter, and to whom? Tap into what’s current and trending with this issue of Council Connection, then find us on Facebook and Twitter for daily updates and opportunities to get involved.
Meet Ari Ne’eman, President & Co-founder of ASAN
In just ten years, the Autistic Self-Advocacy Network (ASAN) has grown from a small group of volunteers to becoming a leading national advocacy organization run by and for people with autism. Led by President and co-founder, Ari Ne’eman, ASAN is powered by a dedicated team of 10 paid staff, most working out of ASAN’s Washington, DC office. ASAN’s mission can be summarized with the tag-line, “Nothing about us, without us!”
We reached out to Ari as a part of preparations for Autism Awareness Month, and were immediately reminded of the irony of the request. ASAN does not recognize Autism Awareness Month, instead promoting Autism Acceptance Month. Under Ari’s leadership, ASAN is challenging the medical model of autism associated with Autism Awareness, and what he identifies as an unbalanced (and offensive) focus of fundraising to find a cure. Additionally, ASAN is also involved in several important policy issues, including: (1) the Transition to Independence Act (TIA), (2) a Communications Rights Initiative advocating for the rights of non-speaking students to have equal access to public education, and (3) developing policy tool kits for states such as Maryland to guide policy change. Maryland has used one of the tool kits to help pass legislation ensuring people with developmental disabilities will not be overlooked for an organ transplant because of disability.
To learn more about these initiatives read the full article here.
Note: On the 10th anniversary of the UN’s recognition of the rights of people with disabilities, and on the recent 8th recognition of Autism Awareness Day, Ari was invited to speak at the United Nations in New York for Autism and the 2030 Agenda: Inclusion and Neurodiversity. The video of the full day’s presentation is here. To view Ari Ne’eman’s panel, advance the time to hour 2:10:20.
Challenge your thinking with these advocates, thought – leaders, bloggers and authors:
This 15 minute TED Talk titled The Forgotten History of Autism is a must watch!!!
Teaser: “Decades ago, few pediatricians had heard of autism. In 1975, 1 in 5,000 kids was estimated to have it.Today, 1 in 68 is on the autism spectrum. What caused this steep rise? Steve Silberman points to “a perfect storm of autism awareness” – a pair of psychologists with an accepting view, an unexpected pop culture moment and a new clinical test. But to really understand, we have to go back further to an Austrian doctor by the name of Hans Asperger, who published a pioneering paper in 1944. Because it was buried in time, autism has been shrouded in misunderstanding ever since.”
Two concerns from parent Dina Bishara regarding the Autism Awareness movement: “First, it hurts autistic children who are growing up and adults who have already grown up hearing the relentless message that they are a tragedy, that they don’t actually belong here, that they are not, in fact, their “real” selves, but some disordered, broken, interrupted version. Second, it directly informs the allocation of hundreds of millions of dollars each year that flow to autism-related research. The efforts to root out the original sins that “cause” autism and to identify biomarkers, with the ultimate aim of “treatment” and prevention, consume the bulk of this money.” Read more here.
Meet the people with autism at the forefront of the Autism Acceptance movement: Why “Autism Awareness” is Not Enough: Steve Silberman (and friends) explain “Autism Acceptance”
So you thought “person first” was the only way to go? Think again: Identity first language vs. Person first language
Pathfinders for Autism:
Increasing Acceptance through Raising Awareness
In 2012, Pathfinders for Autism (PFA) provided “Autism 101” trainings for two Maryland State Police cadet classes. This was a year prior to the tragic death of Ethan Saylor in 2013 and the Governor’s executive order establishing a commission to make recommendations on developmental disabilities training for law enforcement.
Now, just four years later, Rebecca Rienzi, Executive Director, finds herself at the helm of an organization challenged to meet the huge growth in demand for trainings – not just for police officers, but for fire and EMS personnel, librarians, swim instructors and even fielding requests from the business community, particularly restaurants. Restaurant workers, after less than an hour of training, can make the difference between a positive customer experience, and one which results in people with disabilities and families vowing to either never return or worse, to avoid going out at all.
The training now includes focus on autism as well as other developmental disabilities, and meets the required training mandates of the Maryland Police and Correctional Training Commissions (MPCTC). Find a description of the training provided by Pathfinders, here.
“This is a big wave we are riding,” Rebecca explained, “We’ve gone from 2 trainings a year to 3 trainings a week – we’ve done 40 trainings in the past 6 weeks.” To frame these training initiatives in the context of April is Autism fill-in-the-blank-month, PFA’s growing pains are a direct result of a growing awareness of the need for increased acceptance. Today, PFA
is pioneering training initiatives that will build much needed capacity for people with autism and family members to feel welcomed, safe, and valued in all facets of community living. Find more information and extensive resources on autism, tool kits, and links to social media networks at Pathfinders for Autism.
Upcoming Events & Ongoing Opportunities:
People with developmental disabilities, advocates, and family members are encouraged to participate in webinars and conferences to learn first hand about changes impacting services and supports in Maryland.
Parents’ Place of Maryland offers extensive training, information, and support to parents of children with disabilities, including training specific to improving services for children with autism.
April 15 10:00-12:00 DDA offers a free webinar Employment First: Rural Job Development with Nancy Brooks-Lane answering the question: What are the necessary knowledge, skills and abilities required of an Employment Specialist working in areas where by all apparent indicators, there are no jobs?
May 3rd at 2 p.m. Webinar from Association of People Supporting Employment First (APSE): Developing a Meaningful Day.This session will focus on helping people with disabilities achieve active, full, and respected lives as valued members of their community through very individualized Person-Centered Planning processes. “Getting great services” is obviously not the ultimate goal for people with disabilities – “GETTING A GREAT LIFE” is!
May 13 from 8:00 – 5:00 The Arc Maryland 2016 State Convention & Awards Luncheon: BE FEARLESS — Register now!
July 31- August 2 Register now for Reinventing Quality in Baltimore. This year’s theme is Assuring Quality Lives for Everyone: Moving from the Why to the How.