Autistic Artist

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.

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.

Logic and the Average Aspie

I very much enjoyed reading Bev's post: Logically Speaking. Bev reports she had some trouble in her philosophy class despite her logical leanings.

Todd's Visit

Todd Jacobs made a presentation regarding autism service dogs last week at the U.C. Davis M.I.N.D. Institute. He visited Sacramento with his friend Pamela (photo at left) and service dog Glindy (photo below left). My husband and I were the lucky ones to escort them, including taking them out to dinner. I very much enjoyed their company and speaking with Todd and Pamela.

What interested me most, personally, was when Todd mentioned to me that with his dog he was able to go out socially, shopping with his loved ones for half a day. To me that would be a major accomplishment. Like Todd, an hour or two in such an environment is so taxing that I’d be exhausted the rest of the day. In fact, were I to go to another town to make a presentation such as Todd’s, I’d be so tired, I’d have to rest an entire week afterward! But Todd said that his dog provides feedback and a focus that greatly reduces the over-stimulation.

See my review of Todd's presentation at my dog blog.

Autism Service Dogs!

Todd Jacobs and his service dog will present at the U.C. Davis M.I.N.D. Institute in Sacramento, California on Tuesday, May 8th from 7:00 to 9:00 PM. Todd will share his personal experiences with using a service animal for Asperger's Syndrome, and answer questions about how service dogs can support those with autism spectrum disorders--especially high-functioning adults.

We are very happy about Todd's visit, and consider it an exciting step in self-advocacy for the autistic community. Please join us to learn more about the autism service dog movement. We look forward to seeing you there!

For more information, please visit the Sacramento Aspergers Syndrome Support and Information home page.

And you can visit Todd's Service Dog Blog here.

Card Carrying Autist

Just to be safe, I'm making sure emergency workers can identify me as someone with Asperger's Syndrome. I don't do well in emergency, especially a medical one where I'm the one who needs help. So, I've decided just to swallow my pride and admit that some day I might actually need help. I bought a medical bracelet and am now making up a medical card to go with it.

You can make up a free card too by visiting medids.com or designing your own. I found a page with some free medical clip art.

Plus, I found great cards to print out from aspergerinfo.com.

These cards can save your life!

I hope this gives you some ideas to keep yourself or your loved one safe.

Problem Solving with Temple Grandin

Dr. Temple Grandin, designer of livestock handling facilities and a Professor of Animal Science at Colorado State University, gave two presentations yesterday, February 14, at Freeborn Hall at the University of California at Davis here in Northern California. Dr. Grandin's autistic directness made for very lively and and entertaining talks.

Dr. Grandin's presentations overlapped. She described her own history and experience with autism and how autism inspired her work (especially with animals). She also shared ideas and advice to help autistics. The well-attended presentations were sponsored by the MIND Institute.

Here are some of my impressions and reactions to the presentations. I'm sure I could make several long posts regarding many of Dr. Grandin's comments, but I'll keep to three relatively short points here.

The Daily Life

Marla's comment here on my site gave me a lot to think about.

I don't know about where you live, but where I live, the cult of positive thinking is required. Even a hint that one may be sad or that one is criticizing (no matter how justified) can be seen as "negative" and is to be shunned or avoided in public, even among friends and relatives.

I've tried to keep this blog positive, because, as we say in Calfornese: "nobody wants a downer."

But the fact of the matter is that no one can talk about Asperger syndrome and autism without pointing out that many of us, maybe even most of us, do have great difficulties just getting through each day. What is routine for those of you who are not autistic or disabled can be insurmountable for those of us who are. And since Asperger's Syndrome is an invisible disability many around us think we are doing just fine. But that is so far from the facts.

Suicide and Asperger's Syndrome in the News

Nikki Bacharach, daughter of two artists, Burt Bacharach and Angie Dickinson, committed suicide yesterday. The news stories say that Aspergers was the reason she took her own life.

Laurence has written an interesting entry in his blog regarding the news story with some observations with which I generally agree.

However, one can hope that this tragedy will bring Asperger Syndrome, and the difficulties those of us who have it, to greater public recognition ultimately in a more helpful way than how it is currently being reported.

Words and Poety

My early Chanukah gift from my husband was a new digital camera. It is really sweet, but you can tell from this photo that I haven't really learned how to use it yet, although no one can accuse me of being a giant in photography anyway.

This photo shows a very Asperger Syndrome thing I tend to do. I do love to line things up. I'd been wanting a magnetic poetry set for years, so I bought this one last year called "Writer's Remedy," which is geared toward clearing away writer's block. I don't have writer's block and never did. But I thought it might be inspiring to play with the words.

So how did I play with them? Did I arrange lots of poetry? Nooooo. I finally took the words out package (an old fashioned looking apothecary-style medicine bottle) a couple of months ago. I did play with one poem, then proceeded to sort all the parts of speech and line them up. That was the most fun part!

Well, the poem I wrote was during the Halloween season. It is in the upper left of the photo and reads:

Kind yes,
trap not a burned skeleton
but give me an orchestra of ghosts
and curse genius
then, spying on old friends,
I would release my shadow from sweet memory.

I have absolutely no idea what it means. I think it needs to go in my journal with some artwork.

My Special Interests

Part of the definition of Asperger Syndrome is to have one or more special intense interests. We are so fascinated by these things that we engage in them for hours, can become very upset if interrupted, and can ramble on about them to others without even realizing that our audience is as bored as a lumber mill.

I have a number of special interests, and many of them concern using my hands to make things. Many of my hobbies are mathematically based or deal with lining things up or putting things together in a certain way, such as grid-based embroidery and beadwork, book binding, strategy computer games, origami, and pieced quilting. I'm especially fascinated by miniatures and working with very tiny parts and units. I am hyperlexic and can read up to three books per day.

I don't like interrupting my engagement in my interests to do something else -- like eat or go to the bathroom! -- and get incredibly bored being around those who don't share my interests.

And, in turn, I can bore current and potential friends by talking too much about things that interest me, leaving them out of the conversation entirely. (Right now I am taking coaching lessons to correct such behavior which, understandably, looks deliberately rude but is often unconscious on my part. What do you mean, you don't think number theory includes some of the most sublime mysteries of the universe? How could I have possibly guessed that you were not as fascinated in this topic as me?)

As a child I never fit in with my peers. I was not interested in any of the popular things like fashions, music and most TV shows (unless they were science fiction or fantasy, and that was when neither was very popular).

My special interests profoundly affect the creative things I choose to do. For example, I've written two science fiction novels (currently seeking a publisher), while science and mathematics images appear in much of my visual art.