Thursday, April 6, 2017

How can you give people with autism a voice?

April is Autism Acceptance Month, yet autism doesn’t lack for name recognition.

So, how is your health organization or practice talking about autism or reaching and accommodating children and adults with that condition?

Some urge active participation by autism self-advocates to give voice to the condition and those living with it.

For its part, “Sesame Street” is adding an autistic character, Julia.

The many faces of autism

Some instances of autism are severe, and some with the condition exhibit only minor symptoms and see their diagnosis as neither negative nor even something that must be cured .

Autism advocate Steve Silberman advises that articles should include autistic adults as part of their audience.

The autism community, reflecting the condition itself, is a spectrum that includes a wide variety of beliefs on the proper course of action on autism issues.

Some awareness advocates are supporting the “Light It Up Blue” campaign.

They list as proposed actions:

  • Wear blue April 2, 2017.
  • Help make autism trend on social media with #MyAutism.
  • Take action to raise awareness in your community.
  • Make your profile photo on Facebook #GoBlue.

The organization Autism Speaks has published a quiz that tests assumptions about public behaviors. Other organizations are interested in getting raw data in front of new eyes. [RR1]

The impulse to sound an alarm about autism in far from universal. One branch of advocates argues that Autism Awareness Month should be renamed “Autism Acceptance Month.” The proposed rebranding comes in response to a change in objectives around autism research and autism advocacy.

Are we doing enough?

Although organizations such as Autism Speaks have pointed to new estimates of autism occurrence in the population as an “epidemic” and “national crisis,” other activists focus on the lack of services for the large autism community.

Steve Silberman writes:

No matter where you stand on the rising numbers, there is one undeniably shocking thing about them. Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.

The community is campaigning against the stigma they see as harmful to their community and has crafted a series of initiatives to keep people with autism in control of their own story. They point to stories of murder at the hands of caregivers and argue that rhetoric calling for cures and focusing on the travails of beleaguered parents does irrevocable harm to autistic people trying to live their lives.

Silberman continues:

[...]the dire messaging designed to frighten wealthy donors into opening their wallets every April 2 — such as the infamous 2009 “ I Am Autism ” video, which framed the condition as a terminator of marriages that works “faster than pediatric AIDS, cancer, and diabetes combined” — reinforces dangerous negative stereotypes and increases the stigma faced by autistic adults, most of whom don’t wake up in the morning yearning for a cure or wishing that their peers on the spectrum had never been born. Instead, members of groups like the Autistic Self-Advocacy Network look forward to an era when their community no longer faces violence at home or discrimination in the workplace, in housing, in education, in the legal system, in health care, and in society at large.

The Autism Awareness website has released a pledge for people to sign, promising to avoid events that talk about autism without including autistic self-advocates. They also provide a directory of groups of self-advocates to facilitate the inclusion of autistic voices.

However, including people in an event can mean more than just sending invitations. Small concessions can make events more inclusive.

Ensuring a comfortable environment

The Autism Acceptance Month website published a fact sheet on how to accommodate autistic people in group settings such as classrooms.

It lists :

Do not touch an autistic person without asking first.

Touch can be very uncomfortable for autistic people. Do not take this personally. With their permission, try deep pressure or light touch as alternatives. Some other areas affected by touch are difficulty gripping things, like a pencil for writing, or experiencing discomfort due to the feel of clothing on the skin. Experiment with thicker pencils with cushion grips and varieties of clothes textures to find a good match.

Certain sounds can present problems for autistics.

In a meeting it is good to keep doors closed as background sounds, such as a waterfall in a conference room, can be hard to filter out. It is helpful to have a quiet “sensory retreat room” to give people a place to go to recover from an overwhelming situation. Monitor sound systems closely, as harsh sounds like feedback may cause some autistic people to shut down.

Smell can also cause sensory overload.

Ask fellow students not to use perfume or strongly scented toiletries.

Light is also an issue.

Natural light is best. Incandescent light is usually tolerated well. Fluorescent lights, including compact fluorescent bulbs, can cause dizziness and balance and communication problems. Flash photography may cause seizures in autistic people who have epilepsy.

Communicators, how do you plan to speak about autism this month? How are you getting the autism community and self-advocates involved? Please share your plans and campaigns in the comments section.

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