Today I perused the New York times as I do on most Sundays. My ritual is occupying a chair at Dancing Goats Coffee after meditation. It’s calming and I really like the cheese and herb scone. On this Sunday I run across an opinion article, Adult, Autistic and Ignored, how fortuitous. This backs up one purpose for making ASPIE Girls which is what happens when kids with autism grow up?
Each of my friends that I’ve followed over the years is an adult with Aspergers syndrome and functioning as an adult without parental or family support is not only difficult, but sometimes dangerous. Aging parents are left with securing a way to make sure that their Aspie adult child will be in a good situation when they can no longer care for them.
With the growing population of people on the autism spectrum, I think it is society that really needs to pay it forward to take care of adults with autism.
Louise’s statement, “We won’t stay children forever, nor do our children remain babies forever?” speaks to the heart of the ASPIE Girls documentary series. Aspies are considered high functioning on the autism spectrum, but that doesn’t mean that they can lead independent lives. The nature of their executive functioning varies and is inconsistent.
I’ve read hopeful stories of successful lives of Aspies. The outstanding element in the stories is the socio-economic standing of these individuals. Wonderful programs exist at a high-ticket price; wealthier families can create a life long situation tailored to their family member who is autistic. The vast majority of autistic adults aren’t as fortunate. Parents worry over what will happen to their adult child when they are no longer around to provide care. The public programs are limited and not particularly resourceful.
Strong consistent advocacy is needed to tend to the growing number of autistic adults. The life expectancy in the United States is 77 years old, which means that people are adults much longer that they are children. We must plan affordable communities for Aspies to live and contribute to society.
Navigating relationships and developing a social circle comes with ease for some and is deliberate work for others. Aspies tend to fall in the latter category. The heart wants what it wants and the desire to connect with others is what the human heart wants.
They way these women handle socialization sheds a light for me about my unconscious approach to relationships and connecting with others in settings such as work, friendships, dating or lack thereof. I may not be as deliberate and possess a higher comfort level, but still I am instinctively working through the concerns that they voice.
What is the norm? The idea of not being normal means you have to fit in somewhere; have definition or a label. As with many people on the autism spectrum, arriving at a diagnoses can be a circuitous route. Once it’s all sorted out you will enter the disability world.
Michelle Tilghman- Hawkins works for a government agency for people with disabilities. Because of her son and working for the agency, she has become an advocate for parents and those with autism.
Louise Thundercloud is an Aspie and activist. Her 35 year old daughter is autistic and currently a ward of the state. Louise is fighting to free her daughter from an abusive situation.
When I tell people that I’m working on a documentary about black women with AS, they often inquire as to whether AS is different because of race or gender. The question still gives me pause. I don’t have the short answer.
My subject work in film and video has largely centered on the lives of black women and the first person I met with AS is an African American woman.
AS is a disorder that strips people of recognizing social cues and from my perspective being able to read people and adjust accordingly is the forte of black women. We find ourselves on so many playing fields not designed or concerned with us that we have become social chameleons. So to me a black woman with AS is without armor, skills or just plan mother wit.
Through spending time videotaping each of the women I’ve learned more about how African American women function in society and how various African American communities respond to neurological disorders and mental illness.
I expected the women to interact with one another more. After all relating to other black women is a touchstone for working through many life situations. It wasn’t long that I discovered that AS prevented them from forming those kinds of relationships. I became friends with each woman and it just took time, understanding on my part. What typical in the relationships is that are they a self focused and conversation centers largely around their lives. However, they each make an effort to show caring by pushing to do something social on my account. While the efforts may seem minimal to most people, I realize the monumental effort that my friends are making.