The Stresses of Parenting Autism

You've probably heard it before. Autism is a complete burden. It wears down patience of caregivers, tears apart families, and robs people of their lives. There are plenty of blogs around the internet to this effect. If you've been reading about autism, you've probably come across a few of them.

I have two initial reactions to these. First is that autism should not be seen as the enemy. It is not a separate entity, robbing you of your life and your child of his/her humanity. One of the things I devote my life to is the idea that autism is an integral part of an autistic person's identity. Accepting a person means accepting that person's autism as well.

My other response is to say that parenting in general is a stressful job. It's hard to find a parent that isn't tired, especially these days, when it's almost impossible to support a household on a single full time job. Why should families with autistic children be seen any differently?

Well, I have to acknowledge that I'm wrong on this second point. Parenting is certainly stressful. However, developmental disabilities, including autism, present a set of challenges that most parents have no way to prepare for. Most parents of autistic children can't even benefit as much from the experience of their own parents.

The best answer I can think of is to create a network of support programs that are easy to access, well funded, well administered, and that are administered in part by people with the developmental disabilities they are meant to help. After all, we have daycare centers and classes for new parents. For low-income families, we have programs like WIC. It's obvious that we as a society place value on raising children. Why should families with developmentally disabled offspring be on their own?

Parent support groups do exist, and can be very valuable. Many of them also provide childcare for the duration of the meeting. It can be refreshing to know that there are others with the same challenges that you have. One further point about support groups is that I find the best kind of support is the kind that makes you feel good about yourself, despite the problems or challenges you might have. Feel free to try to change the tone of your support group if you do not feel this is the kind of support you're getting.

Unfortunately, support groups for parents of adults seem to be in short supply. There are adults who need full time care and/or supervision. That can be draining, and their parents could really benefit from supporting each other.

One thing that a lot of stressed out parents say is that they don't know what to do. That something like autism doesn't come with a manual. I find myself wondering if classes might help. Again, classes for new parents exist. Why can't we have classes for parents of developmentally disabled children? Of course, each child is different, and some things can only be learned as you go. At the same time, we assign labels because there are certain traits that are common to those who share a common label. It may make the learning process smoother if there is some help in guiding it.

The biggest unfulfilled need that I can see is for respite. In case you don't know, respite is a few hours' relief for the primary care provider. This can take several forms, depending on the needs of the individual. For some, it could be a traditional babysitter or childcare center. A respite provider with knowledge of a person's routines and specific behavioral quirks may be necessary in some cases. As you can imagine, this isn't so hard to find.

The shortage is primarily for people that need full, 24 hour supervision, especially adults. This requires certain kinds of training for things like preventing dangerous or self-harming behaviors. It involves dealing with violent or aggressive actions, while calming the person down. Other kinds of care are required that most people have no experience with. The real problem with providing this kind of respite is that there is a shortage of people that are willing to do it. I was recently talking with some friends of mine about how this problem could be solved. Unfortunately, we were not able to come up with any good answers. If you want to leave any thoughts in the comments section, that would be welcome.

To recap, many of the necessary programs do exist. However, many of them are also underfunded and understaffed. Some programs are offered for free, but others can be prohibitively expensive. These are problems that often prevent families from getting support, or programs being able to adequately provide it.

Many programs are also administered by people who know very little about the developmental disabilities they intend to serve. This is why I feel that developmentally disabled people should play a role in the administration of these programs. We are making progress on that front, however. At least with autism, it's becoming more widely accepted that autistic people are knowledgeable enough to serve autistic people.

There is even movement on this front in government. Ari Ne'eman, a well-known autistic self-advocate, was appointed in 2010 to the National Council on Disability. There is a movement now by the Autistic Self-Advocacy Network (ASAN) to require all autism-related committees to be at least half staffed with autistic people.

In summary, while I may not have started out agreeing about the seriousness of problems raising autistic children, there are some very real problems that need to be solved. Instead of blaming autism, let's work together to push for positive change.

The Art of Mindfulness

Believe it or not even the scatterbrain of  someone with ASD can do this. Trust me.

I just watched an story about Mindfulness on 60 Minutes. The reporter Anderson Cooper affected a kind of 'gee whiz, can this really work' attitude that reminded me that to Americans, the idea of quietly being in the moment is far out. There is nothing new age or nebulas about this concept. It is an ancient practice simply forgotten in the clutter of modern life and technology.

The story pushed the idea that mindfulness can transform our society and it can, but only if it is embraced as a way to get in touch with the present and not some health gimmick to increase your productivity.

Mindfulness can reduce stress, hospitals and doctors now regularly prescribe meditation for high blood pressure and heart patients. It can help those with mental illness, anger issues and addictions. It can benefit everyone.  

In the modern world we think we have to fill up every available moment using communication devices to constantly take in more information. For what reason? We end up communicating less with people around us as we busily check e-mail and cruise the internet.

What is mindfulness and how is it practiced? It is done thru meditation, by doing nothing. Doing nothing is an active practice where one focuses on being in the present moment, not zoning out and wasting time.

I challenge you to stop rolling your eyes to give mindfulness a try.It costs nothing and takes little time.

Put away your phone, etc. and go to a quiet place where you won't be disturbed. Start by sitting up comfortably with your back straight but not tensed. Sit cross legged, seiza (sitting on your legs Japanese style) or in a straight back chair with your feet flat on the floor. Place your hands in your lap and close your eyes. Focus on your breathing or feeling your body at rest. Relax and breath in through your nose and out of your mouth. When thoughts start to distract you (and they will) just gently let them go by like a passing cloud and refocus on your breathe. Don't worry if you get distracted, it will lessen as you continue. Don't be judgmental about your success or failure, just keep at it. 

 practice this before you go to sleep or when you wake up  and you will see a change.

Harvey Pekar and American Splendor

I consider myself to be an autism writer, but I would like to try something different this time. A friend of mine introduced me this summer to a comic called American Splendor, by Harvey Pekar. I found this to be such an amazing piece of work that I would like to share it with you. I'll tie it back to my normal subject matter before I finish this post.

American Splendor is an autobiographical comic, and as such, I can't really talk about it without talking about its writer, Harvey Pekar. The first questions you likely have are who is Harvey Pekar, and what has he done that's worth reading about? The simple answers are no one special, and almost nothing. That's what I find so fascinating about his writing. As he famously said, “ordinary life is pretty complex stuff.”

Pekar was an average working Joe, living in Cleveland. He typically worked low-wage jobs, until settling into one at a Veteran's Administration Hospital. He usually lived in small apartments, often spending what spare money he had feeding his obsession with jazz records, for which he would sometimes write reviews for publication.

In terms of relationships, Pekar would probably say he was not very successful for most of his life. He has been married three times. He stated that he would get married quickly because he tended to settle for any woman that would put up with him. Of course, he also said that he lucked out and met his match with his third wife, Joyce Brabner, who also wrote comics, and would occasionally co-write American Splendor.

Over the course of his life, Pekar struggled with various health problems, which played a role in his comics as well. He went through frequent bouts of depression throughout his life. This appears to have been highly influential in his writing, which I will get into later. He also had frequent problems with his voice, which initially required surgery, but the problem continued to resurface throughout his life, likely due to stress. In addition, Pekar collaborated with his wife, Joyce, in 1995 to produce a graphic novel titled Our Cancer Year, detailing his fight against prostate cancer. He died in July of 2010 from an accidental overdose of antidepressants.

In the mid-1960's, Pekar met Robert Crumb, a man who would help facilitate the creation of American Splendor. Pekar and Crumb shared an interest in records, and though they had similar taste in music, there was little overlap. They would often trade records, both thinking they were taking the other for a sucker.

Crumb himself is an underground comic artist, who's material has always been edgy and is frequently misogynistic. As their friendship developed, Pekar took notice of the differences between the superhero comics that we're all familiar with and the more adult themes of Crumb's work. He noted that a comic is just words and pictures, and that that format could be used to tell almost any kind of story. Contrary to the opinions of most comic writers of the time, Pekar felt that there was no limit to how good a comic can be.

One day, Pekar decided to try his hand at making a comic. He never learned to draw very well, so he made stick figure drawings, along with dialog and captions. While he was showing it to his friends, Robert Crumb commented on how good it was and asked to illustrate it. The first issue of American Splendor was subsequently published in 1972. It was always self-published, and Pekar was never able to make more money from it than it took to publish it. Several of his friends illustrated his comics over the years, usually as a favor to him.

As I said earlier, the content of American Splendor was usually centered around Harvey Pekar's own personal experiences. Typical stories have been recreating conversations with friends and co-workers, helping someone move, trying to find money to buy a rare jazz record, or even going to the store or trying to get motivated to go to work in the morning. Each panel would describe his thoughts and observations of the situation, either at the time or reflecting on it later.

Pekar was never afraid to portray himself in a negative light. He would often show himself being loud and obnoxious (possibly leading to his vocal problems) or abusive toward his friends. He would often portray thoughts that most of us keep to ourselves, such as those about the person in front of him at the checkout counter.

At the same time, he would often include some of life's lessons that he learned from his experiences. Lessons such as fighting often not being a good solution to confrontation, or when a hobby can become a problem (he unsuccessfully tried to steal some jazz records from a radio station once). He's talked about lessons in not judging others. A highly conservative acquaintance he had that he didn't got on with very well (he's always been something of a lefty) turned out to be the most reliable friend he had when he had to move suddenly. He's even provided some insight into what might cause racist attitudes in some people, which is a position I've never been able to understand until then.

I promised I would talk about the influence Pekar's depression had on his writing. There were times when he had absolutely no motivation to do anything except sleep. Even activities that normally excited him, such as reading or buying and listening to jazz records, held no interest to him. Though nothing really happened, these times would turn into some of the more interesting stories. Pekar's writing style is very cerebral, so the bulk of the story would be about what was going on in his head. I don't know if I can do these stories justice by describing them in detail here, so I suggest you read some of them yourself.

Since I consider myself an autism writer, it would be natural for you to ask if I think Harvey Pekar may have been autistic. The truth is I don't know. As far as I'm aware, he's never declared himself, and I see little value beyond idle entertainment in speculating.

The real reason I'm writing about this is what I feel like I've gained from reading American Splendor: insight. I've always felt that saying differences are only skin deep left out neurodiversity, since our differences go as deep as how our brains work. When there are people in the world like Harvey Pekar, who are willing to share their inner thoughts with us, the kinds of thoughts that most of us hide and pretend we don't have, it becomes clear that thought processes are just another shallow difference. It really was an eye-opening experience in how similar we all are as human beings.

If you are interested in American Splendor, there are some compilations that are probably a good place to start. You can probably buy them from most book sellers. Ask for it if they don't have any in stock. It's worth the read.