My Fights With Autism and The Need for More Awareness

Kristen Kristen is eighteen years old and currently in her third year of high school. A statement I have always found confounding is, “I wouldn’t wish it on anyone.” Let me explain: I find this confusing because what if “it” could be beneficial or insightful for the whole of society? What if perspectives widen because of “it”? Who am I? I am an unknown Aspergian. I was diagnosed at the age of three, but with no follow up afterward. My childhood consisted largely of unwanted (probably neurologist) doctor visits where doctors would run test after test, and force me to look them in the eyes. I grew up with a degrading “you’re not normal” mentality. Needless to say, my childhood, like me, wasn’t “normal.” The doctors finally concluded that I had ADD and gave me Ritalin, which was useless. If that wasn’t cruel enough, in second grade I finally realized…

Headlines: Abuse and Empathy

Zoe illusionofcompetence.blogspot.com WARNING: this post discusses child abuse We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers. In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren’t allowed to walk around the house or to go to school. I don’t know their names. Their father, John Eckhart, told police, “What am I supposed to do? Let them run around the house? They’re autistic.” In Massachusetts, Kristin LaBrie was found guilty of “attempted murder, assault and battery on a disabled person and a child, and child endangerment,” after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was…

Why I’m Wearing Black

Corina Lynn Becker nostereotypeshere.blogspot.com April is an emotionally charged month for me, April 1st especially. Up to grade six, it was because I dreaded April Fool’s Day, a day dedicated to pulling pranks I did not enjoy. However, in grade seven, I was given more reason to not like the day. On his 77th birthday, my Grandpa had a massive stroke. The damage was severe enough that any operation would just leave him in a vegetative state. It was decided that Grandpa, a man dedicated to his work as a minister, would not be happy in such a state. So we just sat there for three days, waiting for him to die. On April 1st, at 8:30 AM, Grandpa passed away. It was the first time I experienced the loss of close relative. To me, it was losing a huge chunk of my foundational support. I had always assumed he…

About Stimming

Zoe illusionofcompetence.blogspot.com I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback — not that I knew or cared about this. My rubber bouncy balls comforted me. But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls. I used to flap my hands and arms. Sometimes I would jump up…

Speaking Out Not Shutting Down

Though it seemed like business as usual here at The Thinking Person’s Guide to Autism on Monday, November 1, our editors were participating in The Coffee Klatch’s Communicate to Educate 24 hour tweetchat instead of the same-day “Shut Down” autism fundraising campaign. We’ll let some of our favorite activists and advocates explain why we spoke out instead of shutting down: Steve Silberman at NeuroTribes: The idea that going virtually mute is an appropriate way to honor autistic people — for whom the Net has opened new avenues of communication and community building — does not sit well with some autistic self-advocates. TPGA Contributor Corina Becker: I was recently asked by a person on Twitter to participate, and I responded that there wasn’t much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating. I pointed out to this person…

‘Autistic’ or ‘Person With Autism’?

Jean Winegardner www.stimeyland.com When I write my column Autism Unexpected for Washington Times Communities, I use the words “person with autism” and “autistic person” pretty interchangeably. Every once in a while, I get a comment telling me I should use “person first” language, meaning I shouldn’t use the word “autistic” to describe a person. Because I’ve heard this criticism more than once, I feel it necessary to tell you that I not only use the word “autistic” intentionally, but thoughtfully and with purpose. The theory behind person-first language (“person with autism”) is that it recognizes the person before the disability and stresses that there is more to a person than just autism. I asked my blog readers and my Twitter followers which they preferred, and the majority, mostly parents of children with autism, reported that they prefer the person-first terminology. Person-first language is an easy philosophy to accept. It makes…

What I Want People to Know

Corina Lynn Becker nostereotypeshere.blogspot.com In my time browsing the online community, I often get asked about my story, what it’s like to be a late-diagnosed autistic and what I want people to know. This is rather odd, because I’m not in the habit of showing off my scars, but there are some things that I think that I can talk about. I want to be very honest with you. I am an adult living on social assistance, in a shared accommodation run by a non-profit housing organization. Despite being highly educated, I find it difficult to find and maintain a job on my own, and I’m not even sure that I ever will. I struggle to survive with few to no supports, mostly my family and the little that some organizations have been able to provide. It is, at times, very and extremely hard. There is a lot to remember,…

What is Neurodiversity?

Mike Stanton actionforautism.co.uk When I attended the National Autism Society’s first International Autism Conference in London in 2005, I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who visited the MIND Institute at UC Davis. The young man was asked what he would do if they could develop a pill to cure autism. He thought for a while before replying that he would take half the pill. I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.” The idea of neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order.…

Identifying and Avoiding Autism Cults

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa A child’s autism diagnosis can mess with parents’ heads. Media portrayals of children with autism and their adult spectrum-mates dwell almost exclusively on negatives and challenges, so when a parent is told that their child is autistic, they are usually incredibly upset. It doesn’t help when doctors lack the bedside manner to soften the emotional impact of their diagnoses, or have no information about contemporary autism therapies and resources. When that happens, parents are both freaked out and flapping in the wind. Their child’s doctor was supposed to give them answers and guidance, but instead upended their lives, then shoved them out the door. No one can explain why they have a child with autism, and they know nothing about autism. They are emotionally reeling, angry with the medical establishment, and hungry for any information that will help their child. Most parents start…