Autistic Artist

What is it like to raise six kids with autism?

Watch this interesting video from ABC news.

Struggling to Survive

As I've mentioned before, many autistic adults struggle with day-to-day existence while most non-autistics, and sometimes even we autistics ourselves, underestimate how precarious our lives have become when we are left without support.

Severe Autism, Denied Support: Struggling to Survive in the Mainstream has been written by Leonard Jayson with Marla Comm about Marla's life as an autistic child and adult who is given no resources or support. Marla has posted in the comments section of this blog over the months detailing some of her difficulties. It is terribly hard, I know from my own experience, to have such a disability and not to be heard or helped by those around us. Usually, only a very few of those closest to us know a little of what we go through.

I have not yet read this book, but hope to do so and review it here on my blog.

Services for Autistic Adults, Part 2

Well, I've put this off for long enough. I was trying to give myself some space between the Blue Ribbon Commission meeting and my thoughts about it, but the time has only strengthened my desire to be completely Aspie honest, as opposed to neuro-typical diplomatic.

But there is really no other way to say it. Given what I observed at the Blue Ribbon Commission meeting, I do not expect our government and society to start paying real attention to the needs of autistic adults until the current generation of autistic children become adults when some of the more perceptive parents in organizations like FEAT start to realize what that really means.

And that means that there is no cure for my generation, there is no cure for the current generation, and there won't be a cure for any generation. At best, there may be genetic prevention, if, as a society, we allow the medical industry to sell us that option.

At some point some parents of the current generation of autistics may figure out that early intervention only results in an autistic Johnny who seems like everybody else some of the time. But, in reality autistic Johnny's life is just as difficult as before, if not more so because neurotypicals now expect Johnny to be like everyone else, making every thing he has to do so much more difficult. When enough of the neuro-typical parents figure this out, then maybe we will be able to create some concrete useful services for adult autistics.

I think it unlikely that we autistic adults alone are going to be able to convince anyone to provide services for us. For one thing, we are not political enough. We are lucky if we are even social enough. And politicians seldom listen to the poor, the unemployed or underemployed, and the non-social.

What my husband and I saw at the Blue Ribbon Commission meeting we attended was frightening. We saw parents deluding themselves, and politicians playing the delusion game with them. And few are going to listen to us autistic adults because what we have to say is absolutely nothing most, if any, parents and politicians want to hear.

Sorry, I couldn't sugar coat it for you this time. My closest friends know that my favorite words are "I told you so." So, all I can say is, wait a decade or two for my "I told you so" journal or blog entry.

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...

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.

Autreat on the Internet!

Autreat is on the internet. If you didn't make it this year to this renown gathering of autistics by autistics, you can still join in via chat and see slides.