Autistic Artist

Daily Living with Autism

A new email list has been created for those of us with autism. The list is introduced as focusing

on issues relating to daily living needs for autistic adults, in an environment that is positive towards autism. Many of us have significant and real trouble with things like housing, eating, obtaining services, communication, cleanliness, work, access to medical care, finances, transportation, and other "basic" parts of life that are taken for granted by most of the neurotypical world.

More thoughts on Thimerasol and Autism

Todd Jacobs called my attention to this excellent opinion piece in the San Francisco Chronicle regarding the children's vaccinations controversy.

Robots Who Can, Teach

"Children with autism are often described as robotic..." so begins this article in Wired.

And here is a site dedicated to such a project!

So now robots are being invented to teach us how to be neurotypical!

You've got to love the irony...

To Be or Not to Be

So here I am being myself. No, I'm not drunk. That's just me. I'm dancing the Maypole and having fun.

These are the kinds of pictures I used to throw away. But now I'm trying to learn to accept myself as I am, not as so many others want me to be. This is the photo I've submitted to the Autistic Adults Picture Project.

Most of my pictures were like this, or worse, or not much better. My grandmother used to say that I was one of the most un-photogenic people she ever knew. My brother was constantly embarrassed by me in social settings. That was because, from his point of view, I just looked like a dork most of the time.

I've worked awfully hard all my life to fit in. In our society, for a woman to look "normal" is to look as attractive as possible. Finally, I can do it for just a little while with an enormous amount of work. So I limit my contact with others. For example, at first, I refused to dance the Maypole, knowing that the concentration I would need to keep me from falling flat on my face would make it impossible for me to pretend to be anything other than what I am -- autistic.

Compare this photo with my carefully arranged one (at the top of this page on the right) where I'm working very hard to look neurotypical.

So it seems that I always have a difficult choice. Either I look like a dork which turns people off, or else I work hard to look "normal" with the result that some people tell me I'm too high functioning to have any problems. I just can't win!

Services for Autistic Adults, Part 1

Here is the statement I recently presented in writing to the California Legislative Blue Ribbon Commission on Autism on July 6, 2007.

Special thanks to those on the ANI list and the Autistic Adults list who gave me input, especially Todd Jacobs, Helen Alexander, and Ari Ne'eman, as well as Bradley Finberg.

Senator Darrell Steinberg, Dr. Barbara Firestone, and other members of the California Legislative Blue Ribbon Commission on Autism;

I am Arielle Finberg, and I was diagnosed with Asperger's Syndrome. Although Asperger's Syndrome is a so-called mild or high functioning form of autism, those of us who live with this disability generally experience our condition as neither mild nor high functioning. Although many of us have average or high IQ's we often have difficulties as adults holding jobs and maintaining relationships. Often, we cannot even get the medical help we need.

For example, with respect to employment, I have seldom held a job for longer than a year. And because of difficulties in relationships, I presently have no contact at all with my family. As for access to medical help, I was recently turned down for medical insurance due to conditions related to Asperger Syndrome.

If I had not had good luck and help from friends and loved ones, including my wonderful husband, I believe I might be living on the streets right now.

Tragically, many of us adult autistics have not been able to speak out for ourselves. For example, I know in the past I would not even have been able to get to this meeting! So I would like to take the opportunity today, if I may, to express some our needs.

1) Expert panels, such as this one, should include one or more autistic adults to represent the autistic community. Those of us who can, work and pay taxes, including myself. To not be included in such a panel is essentially taxation without representation. (We just celebrated a national holiday based, in part, or eliminating such situations, didn’t we?)

2) Proposed services should address the needs of autistic adults in addition to the needs of autistic children and their families. For example, we need better services to accurately diagnose adults. I personally know those who paid thousands of dollars and took years to get diagnoses. Those individuals are rare, however. Most of us do not have the money or access to experts to be diagnosed at all.

We need ongoing services into adulthood.  Many people think that just because some of us are smart, life is easy for us. But, in fact, gifted adults with High Functioning Autism and Asperger's Syndrome are "doubly disabled." Although I may look “average” to you, in fact, I am not. And having to live up to societal norms while having to cope with the daily challenges of communication difficulties, sensory overload, and motor difficulties, just to name a few, is taxing, psychologically, physically, emotionally, intellectually, and socially. Even after a short public meeting like this one, I will likely go home exhausted.

Helpful services could include medications to deal with sensory issues, anxiety, and depression; ongoing, lifelong counseling to assist with both psychological issues and every day real world social skills, interaction, and training; specialized career development with placement in targeted job environments; and, finally, educational programs and learning environments that are customized and accommodative to the unique needs of adult autistic students. It would also be helpful to have continual autistic ombudsman/outreach support to the employer community.

3) Funding should also address support and integration services for teens and adults (as opposed to being strictly school- or education-focused). For example, we need "safety nets" for adults with Autism and Asperger's as they leave high school, such as a “warm-line” telephone service to address ongoing mental health issues (such as depression), job issues (such as firings), or social issues (such as when we suffer financially, unable to keep roommates and unable to even fill out paperwork for medical or disabled services).

So far, those most vocal in addressing the needs of autistics focus on children, and those needs absolutely must be addressed. But I ask the Commission here today, to remember that children grow up. And at present services for adults are inadequate. For those adult autistics who have extreme difficulties, such services will help alleviate misery and hopelessness that few can imagine. And for those of us labeled “higher functioning,” even just a few educational and integration services would allow us who can to become successful at supporting ourselves and contributing to society.

Thank you for considering these needs.

Who Would Have Thought

Sigourney Weaver spent some time learning about autism when she recently played an autistic woman in the movie Snow Cake. An article says that "One of the most startling things she learned was how variable the condition is...."

"What amazes me is that you are all so different from each other," my honorary Branson pointed out to me a few weeks ago.