Autistic Artist

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.

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.

Single Attention!

I had an excellent conversation yesterday with Branson, my honorary brother. Branson knows about autism and has worked with disabled adults.

So when describing a recent perseveration of mine, Branson said "Have you ever noticed that when a neurotypical does it it's called "persevering," but when a autistic person does it, it's called "perseveration?"

Rory Hoy talks a little about autistic perserverations in his short award winning film, Autism and Me.

I just loved it.

And here's a newspaper article about Rory and his film.

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.

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.

In My Language

Here is an evocative and universal film by autistic Amanda Baggs. I hope you'll watch it. And she has a blog.

Reframing the Glass

We Aspergerians tend to take things literally. That is, we don't always understand "sayings" and "expressions." They're confusing to us. When my mother used to say to me, "It's no used crying over spilt milk," I'd always look around for the milk on the floor!

In fact, some sayings can become major annoyances to us. For me, I hated the "glass is half empty or half full" thing with a passion. I wanted to say to the person, "Are you daft? The glass is half empty and half full! Didn't you take simple arithmetic in school?"

But, of course I didn't say that. By the time the Glass phrase was part of pop psychology, used to determine whether a person was positive or negative (as if there were only two choices in life), I was old enough to realize that I would have hurt the person's feelings. Plus, they would have thought me arrogant for being mathematically precise.

Influencing Others

Yesterday I went to the dentist who gave me a big complement. He told me that because of me, he was insisting that his daughter practice her drums. His daughter loves the drums but, like many twelve year olds, has issues with discipline.

I had originally said, some months ago, how wonderful it was that she was learning drums, one of my favorite instruments. And I mentioned that, sadly, I'd never learned an instrument. I also mentioned that everyone I've ever met who did not keep up with their instrument practice as a child regretted it later when they grew up. That's all.

And that is now why his daughter is still learning drums.

Amazing what one little conversation can do.

Most of us do not realize how profound our words can be to others.

For me, I'm aghast whenever I learn that something I said made a difference. Most of my life I have had profound difficulties communicating. Most of the time I feel like I am a deaf person talking loudly in a room. I cannot hear myself speak. And since others often do not respond to me in a way I understand, I am not sure they can hear me either.

I know that I get ignored or misunderstood much of the time.

Strangely, most people tell me I am articulate. I have a certificate in public speaking. I have had graduate writing and grammar courses. I have had many public and private classes and workshops learning how the English language works. As I child I was even hyperlexic and fascinated by the written word. Moreover, I have studied, though cannot speak, French, German, Spanish, Japanese, Mandarin, Armenian, and Hebrew. I can even say a few words in Arabic and Persian. I can learn all these things by rote.

But most of the time, I don't know what the heck I am saying in any language. And I don't understand what the heck anyone else is saying either. I really have to concentrate to understand the meaning behind the words. I really have to watch what I say with my own mouth, or the person I am talking to will get angry, thinking I'm rude or an idiot.

I am stressed in conversation all the time.

I suppose that is why I love the time I make art. I can communicate without words. I can take time to deliberate. Or I can even be spontaneous without fear of hurting someone's feelings.

And when someone sees something I make they do not always have to intellectually understand it to enjoy or feel it. My results are consistent. I am able to say what I mean visually, even if I can't always articulate it.

Dysgraphia

Dysgraphia can affect those with Asperger Syndrome and this has special impact on me when keeping a journal.

I had a terrible time learning how to write. I was one of only two children in my grammar school who, in sixth grade, had to take a remedial penmanship class. I've taken two calligraphy classes as an adult and continue to practice, but have never achieved the consistency required for fine handwriting. Handwriting is extremely uncomfortable to me and sometimes painful.

I love beautiful handwriting and would love to fill my journal with it. But I struggle to create it. Although I have a difficult time making my letters of consistent in size and slant, I keep trying. Perhaps someday I'll invent a lettering style that is purposely inconsistent! I will call it ARIEL -- as a reaction to ARIAL. Ha!