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.

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.

Are They Even Human?

Here is a further twist to the Du'a Khalil Aswad story. Cao has pointed out that Du'a Khalil Aswad was Yazidi, and the Yazidis were labled by Saddam Hussein as “Devil Worshippers.” Thus the Yazidis are themselves seen as evil. Quit a lot to think about, isn't it?

Are Women Even Human?

I wanted to link to Joss Whedon's moving manifesto because it's important. But then I thought that maybe this discussion didn't fit here because it's not directly about autism. But then I realized it concerned the same issue as my earlier post Are Autistics Even Human?

Are Autistics Even Human?

When I was getting my degree in Anthropology one of the first things we learned about war was that it was much easier to kill people if you dehumanize them first. So, for example, comic books of the World War II era depicted Japanese individuals as inhuman monsters.

Today, it is politically incorrect in the USA to dehumanize those of a different race. However, there are those who claim that autistics are not really seen as human, even within the medical community. This sort of dehumanization would be unacceptable if it were applied to virtually any other group in our society.

I found an interesting blog called Autism Demonized which chronicles such dehumanization and its consequences for autistic people.

Heavy Metals, Con Artists, and Conspiracies, Oh, My!

For Autism Awareness Month (which is this month) , Margaret Romao Toigo
has written this compact overview regarding the politics of Autism. I thought she did a good job summing up the issues and the psychology behind the issues. Toigo is the mother of four children and as a parent, has experience with autism. Her article provides welcome information to those who are not familiar with the controversies raging in the community of autistics and those related to us. Visit Toigo's blog and watch her videos of her and her kids. I love them! I hope she makes more.

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.

Motor Skills

I was incredibly clumsy as a child. I cannot overstate this fact. It was almost impossible for me to be able to catch a ball or throw one. My family and the local kids made fun of me for my lack of coordination. Kids would do almost anything in school not to have me on their team because I was so bad at sports.

Ironically, I loved moving and being in motion. I loved to run and jump. As a child I rocked and spun around. To this day I like non-competitive sports and have enjoyed walking, kung fu, and bicycling (although I didn't learn to ride a bike until well after the other children, at age nine or so). But I have severe acrophobia and am always afraid to climb on things like a bike. (I am hoping eventually to buy a recumbent bicycle which is much lower to the ground.)

I also have issues with balance. I often feel disoriented when walking, and the slower I walk, the worse it is. I often crash into doorways and furniture. It is not uncommon for me to have bruises and not to know how I got them.

Communication

Our ability to communicate impacts our ability to work with others and to make and keep friends. I think that communication is perhaps most important issue affecting anyone who is autistic.

Communication for us is very complicated. For example, autistics are highly visual and many, if not most, prefer to communicate visually. Many of us are non-verbal entirely. And those of us who are verbal still have great difficulties conveying our meaning to others.

I'll be exploring the many facets of communication and autism in future entries. For now, here is a very brief history of my own communication difficulties.

Asperger Syndrome is differentiated from other forms of autism by a facility with language. I have always loved to read, and people tell me I seem quite articulate. I also, as you can tell, write fairly well (keep in mind I have had more writing classes and workshops than I care to count).

Yet, I have always had great difficulty communicating with others. My grandmother often said to me frequently: “You don’t communicate.”

When I try to communicate, I feel that people don’t listen to me or even hear what I say. Other times, people tell me I talk too loudly and too fast. And even though I can ramble (usually out of nerviousness or when discussing one of my special interests), and have been called a "chatter box" by some, I actually don't like to talk at all!

I find conversations to be a huge amount of work and quite exhausting. Whenever I know I have to talk to someone, I feel like I'm preparing to run a race physically. I wish there was some other way to communicate with people besides talking.

I don't know how soon I spoke as a child, but I believe I was talking by age three, certainly by age four. Then, what I said often got me slapped or verbally assaulted for reasons which were, and usually remained, a mystery to me. I can still lose friends over saying something stupid that I do not realize is stupid.

I have extreme difficulties understanding audio lectures and directions. Since many employers train their workers by giving fairly complex verbal directions, I usually flounder in work situations compared to fellow employees. I can only learn something by watching others and having something visual -- a chart or diagram is much better than written paragraphs, for example. Then must do the required task myself in order to learn it.

Just having someone tell me what to do and then walk away will not work. Because most people think of me as very smart, they get very confused when I later act like a moron because I cannot follow directions.