Friday, April 29, 2011
As long as we’ve worked with people on the autism spectrum there have been people who have a hard time with 'the A word.'
Then there’s the more recent problem of how to refer to someone diagnosed with autism.
Are they autistic? Many people, including many autistic people feel strongly that they are. Today I heard Ari Ne’eman speak about this. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN) and was appointed to the National Council on Disability by President Obama in 2009. In Ari's view, he is not someone with Judaism or someone with an American background or someone with male genitalia; he’s a Jewish American guy. In fact, he’s an autistic Jewish American guy. And he’s a lucky one because he embraces all of these special aspects of himself.
Or, are they a person with autism? There are many people who feel strongly that autism does not define a person. Just as we don’t call someone a heart diseased individual, or a broken armed man they say we shouldn’t define someone as an autistic person, but rather a person with autism. A person should not be defined by diagnosis or disability; they are a person first, and they happen to have autism.
When the person-first movement began, I was criticized when I wrote something that was not in person-first language. I spent years rewriting and rethinking so that I write and speak in “person-first” language. But Ari’s point is well taken too. Autism, especially for high functioning individuals is not something scary or negative; it’s a way of being with a lot of cool advantages.
I do fear that this issue can be divisive in the community. We can refer to someone as blonde or as a person with blonde hair. A near-sighted person is also a person who wears glasses; a clinically depressed person has depression. These are just facts. If you are proud of your autism and define yourself or your child that way – that’s great for you. I wish it could be that way for everyone.
But I can’t judge you if you or someone you love are heavily impacted or impaired by autism and you have difficulty embracing it. Perhaps it acts as more of a disability for you in your life - is it wrong to not want to be defined by the diagnosis that inhibits you? Or to have your child defined in this way? In our family, we sometimes say that Tariq is autistic, sometimes that he has autism, and sometimes he’s AAAAHHHHtistic or has AAAAHHHHHtism. None of this speaks to our feelings for him or our wishes for his opportunities and happiness.
Tuesday, April 26, 2011
“I am just so angry.” With his voice shaking, he said what other men in the circle were thinking and feeling. “When I get home and approach my son, he pushes me away. I can’t stand it anymore. He just wants his mother, and he pushes me away from her too. The other day I told my wife I am ready to sign my parental rights away.”
Alex loves his son, but it’s the autism this man hates and the way it makes connecting seem impossible. The occasion for this fathers (and male therapists) group meeting on April 15 was the opening of the Autism Resource Center by the Ontario Arc in Canandaigua, New York where I was their guest speaker.
Once the anger was outed, the whole group of men seemed to open up. Inside the shell of anger, the men found fear, sadness, guilt, and shame. Their honesty with each other opened the door to possibilities for connecting with their children. The man who started the discussion didn’t come to disown his son-- he came to find out what he could do.
Another man talked about how getting on the floor with his son and just tickling opened the door to the possibilities of playing together. Others shared what they could do with their children and how to follow their child’s lead, and those still at a loss got ideas and inspiration. They planned to meet again.
After my presentation the next day, Jen approached me to say that her husband, Alex, came home determined to find ways of connecting with their son. Maybe now she could get some breaks. She was so grateful there was now a fathers group in their town.
Monday, April 25, 2011
In my four months as a parent, I have already become acquainted with the incredible joy having a child affords--as well as the intense vulnerability. A couple of days after my daughter was born, she had the "heel prick" test in the hospital, which tests for a variety of metabolic diseases, most notably PKU. Beyond feeling sad when she cried as they pricked her heel, I didn't think much about the test and promptly forgot about it once we left the hospital.
Thursday, April 14, 2011
On April 2, 2011, the Autism Society of El Paso sponsored its “12th Annual International Autism Conference.” Over 150 people attended from 2 countries and 3 states: Texas, New Mexico, and Chihuahua (Mexico). On Friday evening, over 40 men gathered to talk about fatherhood when a child has autism. As one father put it, “The conference wasn’t about you, it was about us. You helped us to talk about ourselves and connect with each other.” As the father of a nonverbal adult son on the spectrum, that meant the world to me.Then on Saturday , over 100 men and women, parents and professionals, Spanish and English speaking, spent the day talking about families and taking care of everyone’s needs. I was their guest speaker and facilitator. Having let down their “armor” the night before, men were able to speak openly of their struggles, their dreams, and their love for their families. The women were deeply moved by hearing how much they are appreciated and then spoke from their hearts.
How is this international? When people come together across borders in different languages to speak of common experiences and shared thoughts and feelings, there is an incredible wave of fellowship and compassion. Men and women showed appreciation for each other and their struggles to be present for each other under trying circumstances. Although connecting for children with autism is different and difficult, being aware makes contact possible. As one parent shared, “If there’s anything our children with autism teach us, it is to be present in the moment.”