Voices of Those on the Spectrum
Some of our most powerful and insightful voices in the autism field are those on the spectrum themselves. Most people know Temple Grandin who has a powerful media presence, but there are many other excellent writers and speakers. One of my favorites is Judy Endow who is a mom, writer, social worker, and person with autism. She posts her blogs on Ollibean, a site that connects families, self-advocates, & professionals in the cross-disability community to help create online and offline communities in order to help us all make informed decisions, share stories and work together to create a more socially just, inclusive world. Judy did a great post this week on Autism and Fluid Speech. I particularly liked this quote:
“People can easily see movement difficulties that are physical such as when a person has difficulty getting through a doorway or get stuck in a repetitive movement. However, nobody can see when the movement difficulty is internal such as words that cannot come out as speaking words at the time you wish to say them (Endow, 2013).”
John Elder Robison, adult with Asperger Syndrome, is another strong voice in the autism community. He wrote an opinion piece about autism research and how it has failed those on the spectrum. John says, “Research into the genetic and biological foundations of autism is surely worthwhile, but it’s a long-term game (see “Solving the Autism Puzzle”). The time from discovery to deployment of an approved therapy is measured in decades, while the autism community needs help right away.” John went on to say we if we accept that autistic people are neurologically different rather than sick, then the research goal can be about helping people with autism achieve their best quality of life. John has a website and has also written 4 books on various insights into Asperger Syndrome.
Nonverbal individuals with autism are giving us valuable insight on how they experience the world. UK resident Sophie Webster wrote a post about sensory overload. “When I get sensory overload it’s like I have 100 buzzing bees in my head, and my head hurts a lot and feels like it will go bang! like a balloon. It’s the most uncomfortable thing ever. I bang my head on things to try and relieve the pressure in my head, to try and stop the feeling. While I’m experiencing sensory overload, I find it hard to talk or make any sentences.”
Amy Sequenzia is an interesting non-verbal author to read . Her work is found on her own website or on Ollibean or the Autism Women’s Network. Amy lets us know that how we treat people with autism and our perceptions matter. She has a body that does not cooperate and can’t speak, yet her mind is active with much to express. Here is a blog post she did about Abelism and Pity.
Australian mom with autism Ally Grace wrote an excellent blog about being autistic. She wrote a post entitled 14 Things I Hate About Being Autistic which gives the reader real insight into what people on the spectrum experience, often as a result of our own ignorance and assumptions. These voices on the spectrum are raising awareness, changing our thinking, and letting us know how they feel and what they need. Dignity, respect and the right to be who they are stand in the forefront. Are we listening?
If you have the desire to delve into books written by people on the spectrum, have a look at these:
Painted Words – Judy Endow
The Reason I Jump – Naoki Higashida
Thinking In Pictures – Temple Grandin
Listening to those who are on the autism spectrum can help us better understand what it is like to be autistic and in turn be more sensitive to their needs, concerns, wishes, and what makes them happy. Too often we don’t seek their input about programming, human rights, educational issues, independent living, or housing. They are not invited to be on autism boards or stakeholders in organizations that influence their well being. It’s time to include, not exclude, these articulate voices whose wisdom can prevent us from making mistakes.