2016 a year of change for the autism community

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The Art of Autism looks back at 2016 and prepares for challenges in the future.

By Debra Muzikar with Keri Bowers

2016 has shown itself to be a major year for transformation. Within the autism world it has been no different. The Art of Autism has attempted to keep up with the changing dynamics. We predict 2017 will present its own set of challenges. Here’s a brief recap of some of the major stories and what we see for 2017.

Changes within 3 major nonprofits: Autism Speaks, Autism Society of America (ASA) and the Autistic Self Advocacy Network (ASAN)

The largest autism nonprofit in the world Autism Speaks has continued to make changes in 2016. The changes include a new Executive Director, adding two autistic people to their board – Stephen Shore and Valerie Paradiz; founder Bob Wright stepping down; the unfortunate passing of his wife Suzanne Wright; and the rewrite of Autism Speaks’ mission statement to remove the word “cure.

Stephen Shore

In an interview with The Art of Autism Stephen Shore shared, “After ten years of telling us ‘it’s time to listen,’ Autism Speaks now visibly listening to people on the autism spectrum is a very good sign.”  In the past, Autism Speaks has received intense criticism from autism self-advocates for being non-inclusive and not listening to autistic people. The Art of Autism is encouraged by the shift within Autism Speaks.

The Autism Society of America (ASA) also is poised for change. The oldest of autism organizations in the United States, ASA, has updated their website this year and is vying for a more viable position within the every-changing autism landscape. Matt Asner who moved from Autism Speaks to ASA in 2016 spoke to the Art of Autism about what changes he sees coming. “We’re working on several training programs. We’re talking to legislators as well. Changing dynamics in the work place is important. We have to bring employers to an understanding that there is a value in that,” Matt says.

In 2016, The Autistic Self Advocacy Network (ASAN), the primary autism nonprofit which represents autistic people and not other interests, has also announced a major change. Founder and Executive Director Ari Ne’eman will step down at the end of 2016 and be replaced by nonprofit’s current Deputy Executive Director Julia Bascom.

“Working in coalition, we have to mobilize our grassroots, right now, immediately, to defend and advance the progress we’ve made,” Julia Bascom writes (November 16, 2016) Just Stimmin‘.  “Protecting the affordable care act. Medicaid. Deinstitutionalization. Self determination. Access to justice.”

Employment issues come to the forefront

In 2016,  80 – 90 percent of autistic people were unemployed or underemployed.  The solution to the problem of unemployment is not just about training autistic people but changing the culture in the work force and rethinking traditional work models.

Employer-Based Initiatives

Introduced in 2015, Microsoft’s “Autism at Work” initiative continues to be a model for other companies. “Autistic employees … feel better at Microsoft than at past jobs, because they know they’ll be assisted in asking for accommodations, they have people who can help them navigate social situations, and they don’t have to hide their quirks,” Vahini Vahari writes in a Fast Company (Sept. 2016) article about the Microsoft initiative.

Other companies such as Walgreens have progressive training programs for people with developmental disabilities. Walgreens goal is to fill 20 percent of its distribution center jobs with people with disabilities. In order to achieve this goal, Walgreens has made systematic changes in their work environment to accommodate people with disabilities. (Kevin, Debra Muzikar’s son worked in a training program at Walgreens for a semester of his high school transition program).

Entrepreneurial Programs

For many autistic people who experience difficulty working in a traditional environment, entrepreneurship can be a viable option but training is often needed. Organizations such as Celebrate Edu and Picasso Einstein have created curricula for autistic entrepreneurs. At the end of 2016, Celebrate Edu received a grant from Autism Speaks to train autistic entrepreneurs in many cities throughout the United States.

2016 saw the The Center for Autism and Related Disorders (CARD) enter the employment discussion.  In 2016 the University of Miami – NSU Center for Autism and Related Disorders (CARD) with the Taft Foundation announced the “Awakening the Autism Entrepreneur” initiative. They received a 3-year $510,000 grant that goes towards funding educational workshops nationwide, podcasts, webinars, and other innovative activities for those interested in pursuing social enterprises employing people with autism.

The Art of Autism is in the process of creating entrepreneurial videos for autistic adults who are pursuing their passion in the Arts. We are also in the process of talking to corporations about licensing art which will provide revenue streams to autistic artists.

Social Enterprise Solutions

Dan Swearingen, Founder of Autistry Studios feels that Social Enterprise may be the best solution to employment issues facing autistic people in the future.  “An example of a social enterprise that Autistry Studios could create would be a light manufacturing business making products such as small furniture items out of wood, model kits produced on machines like our laser cutters and 3D printers, and textile products sewn by student/employees. Because our goal is interesting products that provide good employment we can and will migrate through many different product ideas and types. Depending on a student/employee’s ability they could hold any one of many jobs within this manufacturing organization: product design, marketing, sales, production, customer service … ” Dan writes.

Technical Training Programs

Besides training programs for entrepreneurship, organizations such as Specialisterne, Exceptional Minds, NonPareil, and Inclusion Films ramped up their training programs in 2016. Inclusion Films, which trains autistic people in film production announced additional locations opening in California in 2017.   New programs such as Ability Productions began planting seeds for media and production projects aimed at training autistics for eventual placement in the workforce, with an emphasis on utilizing the works of animators, artists, composers and musicians.

Mentorship

In 2016, the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) and the National Endowment for the Arts participated in a Careers in the Arts Dialogue. From their Final report the #1 Trending Idea was to create Grants for Mentorship for the Disabled. The Art of Autism believes that Autistic people can often be the best mentors for other autistic people.

The Art of Autism is encouraged by the report and hopes to see disabled people being represented more in the Grant-making process (including serving on panels that review the grants).

Sheltered Workshops

Although unpopular among some advocates, sheltered workshops continue to provide employment, albeit often at subminimum wages for many people with significant challenges. Michael John Carley writes “These often unpopular but sometimes ‘that’s all there is’ programs are usually organized by residential facilities or state-funded service agencies, wherein individuals work limited hours at tasks that won’t endanger their self-esteem, yet can still be thought of as productive to a hiring company (stuffing envelopes, tying ribbons…etc.). Too often advocates on our (spectrum) side cry for the elimination of such workshops when there are no employment alternatives in the particular region … Therefore, when we are successful in shutting a workshop down we would sentence these folks to, admittedly, being more out into the community, but also back to watching TV all day on their parents’ or housing agencies’ couches.” Michael goes on to say the problem with many of these workshops is that they are “too often illegally implemented.”

Ari Ne’eman writes in ASAN’s Annual Report “Ten years ago, few talked of a future in which the hundreds of thousands of disabled workers being paid less than minimum wage would enjoy the full protections of labor law. Today, bi-partisan legislation to eliminate sub-minimum wage and invest in integrated employment is gathering momentum in Congress.”

What Individuals Can Do

Employment should not be left solely to big corporations and nonprofits. In a Forbes magazine article (Dec. 2016) on autism and employment Michael Bernick states “On an individual basis, we can use our business contacts to help job seekers get in the door (a personal referral remains the best way to hire). We can refer job seekers to the network of thousands of job developers with state employment departments, departments of rehabilitation and community providers.”

The Art of Autism agrees with Michael Bernick and continues to promote creative people who write books, make films, or create music CD’s to use autistic artists on their covers and in their content. We are setting the stage to pursue licensing agreements with corporations that can give our artists streams of income.

Entertainment  

In film and movies we see more autistic characters and more people who are autistic creating their own films. The Art of Autism would like to see more actors who actually have disabilities in roles (and not neurotypical actors playing disabled roles).  A White Paper in 2016 by the Ruderman Family Foundation revealed that, despite those with disabilities representing nearly 20% of the country’s population, about 95% of characters with disabilities on television are played by able-bodied actors.

Although not autistic, the main character in the ABC Emmy-award winning series “Speechless” is non-speaking (he has cerebral palsy). Many with autistic family members can identify with J.J.’s mobility and communication challenges. The six-part British Series “The A Word” about a family grappling with the autism diagnosis of their son debuted on Sundance TV.

In early 2016, PBS aired the documentary Autism in Love exploring relationships. Later in the year, PBS also aired a series on employment and autism (John Donvan and Caren Zucker). The documentary Life, Animated  garnered accolades and the Best Director award at the Sundance Film Festival.

julia

In March, Sesame Street announced the second phase of their autism initiative, Sesame Street and Autism: See Amazing in All Children, with the release of 12 new videos featuring autistic children.

The Art of Autism sponsored a California Road Trip where we premiered the film “Normal People Scare Me Too” Taylor Park Cross, Keri Bowers, Inclusion Films which featured an autistic cast, crew, assistant editor and director, as well as music compositions, animations, and art created mostly by autistic creatives.

The Art of Autism is collaborating as sponsor in-kind on a feature film, “A Sound Paradigm” (Ability Productions, Bob DeMarco), the story of Dave Royer, owner of a Grammy Winning microphone manufacturing company, the team that surrounded him to support his success, and the underpinnings of what it takes to support autistic people to be successful in the workforce and futures.

More Focus on Women and Girls

2016 saw more coverage given to girls and women on the autism spectrum than in the past. A 2016 Scientific American article suggests that girls are often overlooked when making diagnoses. “…females with autism may be closer to typically developing males in their social abilities than typical girls or boys with autism,” Maia Szalavitz writes. Girls may have a better ability to mask (or hide) their symptoms than boys. Girls on the spectrum are diagnosed an average two years later than boys and have a different set of characteristics than boys.

Social Media became more important

Communication through social media became more important in 2016.  Organizations with over 100,000 Facebook likes such as Thinking Person’s Guide to Autism and Artists and Autism became even more influential within the autism community.

Social media comes with its own sets of problems for the autism community. A research study in 2016 showed that although people with developmental disabilities may engage in “a world of friendships and relationships that are not necessarily available to them in real life … being a part of the online community may also lead to increased vulnerability.”  Issues of privacy, harassment, and alienation are reported by many who engage in online communication.  More study is needed on the benefits and pitfalls of social media communication.

Hashtags became more important to find community. This blog includes 14 hashtags that people with disabilities use to share their stories.  Specific to the autism community is #ActuallyAutistic used by people on the autism spectrum. The hashtag #Autchat is used for chats among #ActuallyAutistic people bi-weekly on Twitter. #CripTheVote is a hashtag used as a nonpartisan online movement activating and engaging disabled people on policies and practices important within their community.

Notable Deaths

Carrie Fisher, died the last week of 2016. Carrie is worth mentioning in this blog as she was a tremendous self-advocate for mental illness. By speaking out about her bipolar diagnosis, her depression, and her addictions she brought attention to the importance of ending stigmas and being honest about struggles. Many of us in the autism community recognize her contribution to acceptance of neurodiversity.

Legislation

As we write this, President Obama has signed the 21st Century Cures Act. Although hailed by the mainstream news media and organizations such as NAMI and Autism Speaks, the Act has many critics within the disability community including ASAN and Bazelon Center for Mental Health.We need to invest in intensive community-based services that people need,” Bethany Lilly, an attorney at Bazelon states. “The language related to mental health that is included in H.R. 34 still promotes institutionalization, still increases funding for involuntary outpatient commitment, and influences new HIPPA rules to lessen privacy for people with psychiatric disabilities,” an ASAN alert warns. Senator Elizabeth Warren said the bill had been “hijacked” by the pharmaceutical industry.

2016 the Art of Autism – a Recap

In 2016 The Art of Autism hosted the following initiatives which relied heavily on the creativity within our community:

  • 2016 Art of Autism calendar featuring artists on the autism spectrum
  • The Art of Autism Hearts and Arts Road Trip reached thousands of people in California in May. A highlight of the trip was Senator Joel Anderson arranging The Art of Autism’s name on the marquee of the California Senate floor.

Hearts and Arts Marquee

  • SugarArt4Autism Cake Collaboration for Autism Awareness Month featured art work on cakes from many of our participating artists.
  • Poems for Peace featured many artists and poets with peace-themed pieces.
  • The Art of Autism partnered with Squag for the Mentorship Project. Several artists within our collaborative created art projects for autistic children.
  • Dear Me Letter Writing Campaign – Letters written to “younger selves,” captured the interest of many.
  • Online Art Galleries – the Art of Autism continues to post new art in our online galleries.  Many businesses and corporations this year have visited our galleries. Some have licensed art providing artists income.

moontainloveandautism

  • Art exhibit in Washington D.C. – 100 percent of participating artists sold work at this exhibit. We had other exhibits throughout the year including an exhibit at the Love and Autism Conference.
  • In November 2016, Debra Muzikar represented the Art of Autism at a meeting at the University of Exeter in the U.K. which paved the way for an upcoming video project which will train and pay autistic artists in animation.
  • On-camera interviews with key note speakers and presenters at the Love and Autism conference for The Art of Autism’s upcoming series of short “how to” films in marketing, branding, business, social media, and self-determination to creating commerce in the arts.
  • Roll-out of the Autism Asperger’s Digest magazine articles written by autistics, with bylines going to them first, with support by Keri Bowers, who pitched the person-first “Art of Autism” articles in 2015 for the 2016 publications. Debra Muzikar continued her Autism File Magazine column “Mind’s Eye” which focuses on creative organizations and people on the autism spectrum.
  • The Art of Autism continued our collaborative model partnering with the well-known disability site The Mighty this year.

Temple Grandin

In addition, The Art of Autism has continued to keep the pulse of the autism community with topical interviews with people such as Stephen Shore, Temple Grandin, Steve Silberman, John Pitney Jr., Matt Asner and others within the autism community. We continue to post first-person informative narratives from people on the spectrum.  We are proud of our Geek Clubs Book Designation of 2016 Impactful Blog. Our readership has increased dramatically in 2016 with over 30,000 people reading our blogs each month. We continue to be advertisement free with no subscription fee.  (We would love to have a corporate sponsor).

And lest we forget, The Art of Autism became a nonprofit in 2016. We are an all-volunteer organization and have accomplished the above with little funding. We feel our nonprofit status will allow us to make a greater impact within the community.

Global Community Goals for 2017

Over the last year The Art of Autism has conducted many interviews and the theme that keeps on appearing is the need for unity within the autism community. In 2017 we will continue to grow this aspect of our forum.

The Art of Autism believes 2017 may be a rocky year for entitlements and we will need all nonprofits, autistic people, parents, and stakeholders working together to keep Medicaid, the Affordable Care Act, deinstitutionalization, self-determination and access to justice (all the things Julia Bascom mentioned).

The Art of Autism believes we must attempt to harness our collective concerns in a unified fashion or we may face significant cutbacks and challenges in 2017 and the years to come. We are heartened by the creativity we see on the part of some corporations to include autistic people in the work force. We hope they will become models for the future. We recognize a need for a “pipeline of creative people” and look forward to seeing this issue addressed in the global community.

For us at The Art of Autism, collaboration is the key … and we’ve shown that the creative arts can be an effective door.

We thank all our contributors and supporters and especially all who participate in our project.

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Debra Muzikar and Keri Bowers are co-founders of the Art of Autism nonprofit.

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