Should You Celebrate Autism Awareness Month?

Autism 'Awareness' or Autism 'Acceptance'?

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April is Autism Awareness Month, and April 2 is World Autism Awareness Day. During the entire month of April you'll hear about autism-oriented fundraisers, autism awareness presentations, autism-friendly happenings, and special opportunities to recognize people on the autism spectrum. You'll also notice that most people involved with these activities are wearing the color blue. In fact, you might even notice buildings (including major top architectural icons) "lighting it up blue" on April 2.

Most of the people who celebrate Autism Awareness Day or Month are not autistic. Instead, they are parents, organizers, and others who care for or about autism. But where are the autistic self-advocates? In many cases, they are actively avoiding the celebrations.

Different responses to Autism Awareness Day and Month come about as a result of the history of the events, the intent behind the events, and the people who created them. 

The Origins of Autism Awareness

Autism, as a diagnosis, has changed radically over the past several decades. Back before the 1990s, autism was not considered to be a spectrum disorder. Thus anyone with an autism diagnosis had relatively severe symptoms. Many professionals believed that autism was a result of poor parenting; the famous psychologist Bruno Bettelheim wrote extensively about what he called "refrigerator" mothering. An adult with autism was typically thought to require an institutional setting.

 

The movie "Rain Man," with Dustin Hoffman and Tom Cruise, provides a good insight into autism in those days. Hoffman's character has been institutionalized for most of his life, despite his verbal and intellectual abilities. Leaving the institution is a frightening experience; he requires full-time care from his brother in order to successfully navigate the outside world.

Enter Dr. Bernard Rimland. A psychologist with an autistic son, he debunked the "refrigerator mother" theory and created an organization called The Autism Society. According to the Society's website, The Autism Society began its first nationwide awareness program in the early 1970s. It was adopted by Congress in 1984. The iconic autism awareness ribbon was designed in 1999. 

Autism Speaks and Autism Awareness 

In 2005, Autism Speaks was founded. Created and funded by the extremely wealthy and influential Bob and Suzanne Wright (who have a grandson with autism), the organization quickly became the major autism-related non-profit in the world. With their strong connections, the Wrights were able to create very high profile autism awareness programs, including:

  • World Autism Awareness Day (April 2), adopted by the United Nations in 2007
  • Light It Up Blue, an international effort to light iconic buildings in blue to raise awareness of autism
  • The Power of One March, which takes place annually on April 2

Autism Speaks sells blue T-shirts, provides resources to groups interested in fundraising or running autism-related programs, and also promotes fundraising marches and events during the month of April.

Institutions ranging from museums and zoos to libraries, schools, and even businesses run special events during that period. 

Events That Take Place During Autism Awareness Month

Autism Awareness Month kicks off on April 2 (to avoid April Fool's Day) with World Autism Awareness Day. On that day, you can expect to see an awful lot of blue. People in blue T-shirts, homes with blue lights, and personal profiles with a blue puzzle piece will be everywhere. There will also be media coverage of autism, special stories about autistic people, and promotion of merchandise featuring the autism puzzle piece icon.

Look for buildings lit with the blue light. In the past, some iconic buildings that have been lit up blue include the Empire State Building in New York City, the Sydney Opera House in Australia, and the CN Building in Toronto.

During the month of April you'll find, among other things:

  • special "sensory friendly" days at all kinds of venues, from movie theaters to amusement parks
  • autism awareness events at schools, community centers, hospitals, and elsewhere
  • fundraising marches and events across the United States and beyond

Why Doesn't Everyone Love Autism Awareness Month?

Because Autism Speaks has become such a large and ubiquitous organization, it essentially "owns" autism awareness month. Television specials, telethons, multimedia advertising, and other forms of outreach are all part of the event.

But Autism Speaks has had—and continues to have—a very questionable relationship with the autism community. Both autistic self-advocates and many groups of parents have had issues with their funding priorities, governance, and perspectives on the causes of autism. While some issues have gone away (such as the presentation of autism as an evil force stealing babies from their carriages), others are still of concern.

Just a few of the issues people have with Autism Speaks:

  • For most of its existence, Autism Speaks had no autistic people on its board. From time to time very high functioning individuals have gotten involved, but at least one individual resigned after a short tenure.
  • Autism Speaks, from its very inception, has been about "curing" what many autistic self-advocates (and quite a few parents) feel is a set of personal qualities rather than a "disease." Thus, instead of accepting children and adults with autism, Autism Speaks has been all about "fixing" them. Over time, many programs have emerged that are more supportive of people living with autism—but bad feelings have remained.
  • The Wright's daughter, Katie, was convinced her son's autism resulted from vaccinations. Thus, despite numerous large, well-documented studies to the contrary, Autism Speaks put quite a bit of research money into yet more digging into vaccines as a cause of autism. This focus has nearly disappeared at this point, but it is still a sore point.
  • The vast majority of the many resources created by Autism Speaks are intended, not for people with autism, but for their parents and families.

An Alternative to Autism Awareness: Autism Acceptance

In order to combat the idea that autism is the enemy—and to celebrate the unique gifts of autistic people—several autism advocacy groups created an alternative celebration called Autism Acceptance Month. According to the Autism Acceptance Month website:

During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people.

Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.

In a nutshell, Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world.

Should I Participate in Autism Awareness Month?

For many families, particularly those who benefit from or support programs at Autism Speaks, Autism Awareness Month is a very important observance. For those with a different "neurodiverse" perspective, however, Autism Acceptance may be a better choice.

 

 

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