The Autistic Me

I have been invited to several support groups for autistic teens and adults over the last six years or so. The people leading these groups do a great job and have a difficult task. Still, many of the participants drift into the dark black hole of self-pity, dwelling on the negatives of life instead of the positives. Yes, a support group exists to help members deal with negatives. But, dwelling on and reliving the negatives can be a vicious cycle as each participant adds another layer of negativity to what is shared by previous speakers. Here are some suggestions to help overcome this challenge: 1) What did you accomplish this week that you believed you might not be able to do? How do you feel about that accomplishment? 2) What have you done recently to improve your life and the lives others? 3) What actions have you taken to be a good role model for others? 4) How are you challenging negative stereotypes about [autism or X]? 5) What do you plan to try in coming weeks? ...

People are curious about relationships and autism; the questions asked most often when I appear before groups are about relationships. I've attempted to answer a few questions on this blog, but I never feel like I'm offering many insights. In a world in which most marriages fail and relationships seem to be transitory, I don't believe we can "blame" autistic traits for relationship issues. What we can do is recognize how autism and other forms of atypical neurology/personality do affect us and our relationships. Still, I caution readers that what I am offering is more general than "autism" and probably applies to every relationship at some time. Caveats stated, I believe the greatest challenge in my relationship with my wife is the sense that I'm unworthy of her friendship, loyalty, and companionship. The Susan is calmer, quieter, more focused, a faster reader, a better student, a much better employee… and on and on when compared to me. She has ...

I finished reading Finding Kansas this weekend. If you want to learn a bit more about the author, Aaron Likens, you should visit his websites: http://lifeontheothersideofthewall.blogspot.com/ http://www.findingkansas.com/ Aaron's father warns readers that the essays within Finding Kansas might seem depressing and hopeless. The essays don't promise a better future for Aaron. As Aaron reminds us, real life isn't neatly packaged with closure at the end — and this book is merely a beginning of sorts, anyway. I'm left feeling miserable about autism spectrum disorders and about my own autistic traits. It is probably because I'm already exhausted and frustrated and reading Finding Kansas while sorting out my own path in life was a bit much to tackle. Finding Kansas is not a self-help book. It's not a traditional memoir. There's no story arch, and I'm not certain there is forward progress. Being tired, I start to see my own "treadmill...

Depression scares me. I can imagine nothing worse than a lack of hope. Page after page,  Finding Kansas: Living and Decoding Asperger's Syndrome reminds the reader that many autistic teens and adults struggle with depression. As I read Aaron Likens' essays, I'm keep returning to something mentioned early in the text by his father: depression. Aaron mentions his mother briefly in an essay, stating that she's had something of an emotional breakdown. At the same time, it is clear that Aaron recognizes his own depression and its illogical nature. I tell families and individuals with autism spectrum disorders that they should work with the best clinicians they can locate (and, sadly, afford). When an ASD is accompanied by depression, anxiety disorders, or other conditions, a relationship with a medical professional with neuropsych knowledge is essential. Be careful, though — psychologists and other clinicians tend to develop biases and blinders based on their areas of ...

I've been working at my computer the last few days, while my limbs are in palsy mode and words take too much effort. When I am tired, it is difficult to control my body. Many autistics I've met tell me the same thing. This is also true for people I know with other physical challenges. I have a history of mild seizures, migraines, palsy, and other annoying physical challenges. And because I'm exhausted, these issues are starting to overwhelm my ability to focus. Worse, my heart sometimes races and "bounces" with an irregular beat under stress. The tingling sensations are unnerving, at best, and keep me on guard. The doctor tells me the tingling is from anemia, for which I've had to receive blood transfusions in the past. My body is often the biggest obstacle to following through with my ideas. Autism seems to come with more than one or two challenges. But, those challenges can be addressed. We can learn to navigate around our bodies, with some help and ef...

We've had a number of stories lately on mothers killing autistic or possibly autistic children. Mother Posts Blog Blaming Stress Before Killing... Texas Mom Kills Children, Blames Autism Colorado Mom Wanted to Have 'Fun in Life' What can anyone say about this? Children are stressful, normal or not. Depression, stress, lack of supports, et cetera, are not excuses to kill. I do not doubt depression is real in some cases, but I do not tolerate any excuse for killing children. Even if we don't have perfect supports, there are supports in most cities and counties. Families also have a responsibility to intervene. It is impossible for me to imagine no one was aware problems were present before these children were killed. The association of autism with infanticide is a common theme in media. I won't bother listing examples.

While I do write about some issues, this blog was started mainly because I would misplace notes to myself. I could shift to Google Docs or another online setting, but some people do seem to find the posts useful or interesting. I don't go out of my way to be an activist or to promote events. I simply write what I think I might use later, thought for self-reflection. I was recently asked why I "don't care more" about various causes. Why don't I attend various meetings and support groups? After all, the logic went, I should be active in organizations because they fight for my rights and promote social justice, etc., etc., etc. Honestly, I'm not that interested. Maybe I should be, but I don't like the negativity, the complaining, and the unhappiness at most meetings -- or on many online sites. I do not define myself by any particular limits. I don't dwell on the negative. I write complaints, deal with what I can, and move ahead. If I'm aroun...

Once I earn my degree and escape Minnesota, I am going to do every thing I can to reset myself and my path in life. Since elementary school, I have wanted to be full-time writer. While I have an interest in different forms, from reporting to dramatic writing, I always view writing as a way to inform and educate a mass audience. I don't see the same divisions between reporting and creative writing that my professors saw. In fact, it's clear that journalism is changing... and a lot of great reporters did write with a creative flair before the 1970s. I'm not even sure what I will do with my degree. It's supposed to open doors, in theory. "I have Ph.D form a writing / communications program. You should publish me." Okay, maybe that's not the exact pitch, but it was meant to help. Plus, in theory it gives me the ability to teach -- thereby funding my writing time. Honestly, I want to sit and write. I want to string words together in such a manner as...

According to Blue Cross, I've had 29 medical claims filed by doctors in the last 90 days. I will begin the New Year with at least three that I have already added to my calendar, one minor surgery, at least one out-patient test, and I am anticipating there will be more medical nonsense to follow. I had to spend the night of December 23-24 in the hospital, my body being decidedly low on certain fluids and nutrients. So, we've gone from trying to fix my vision to a neurological assessment to a neuro-psych wasting my time... to finding a serious, potentially very serious, internal physical problem. At least we know my exhaustion was definitely not psychological. I really was "drained" when I said I felt like I was running out of fuel. The comments I would make about neuro-psychology aside (for now), someone should have caught my medical condition in early October when I first had basic blood tests. Apparently, reading the results wasn't part of the service char...

Today, December 15, 2008, I went to yet another neurological exam. Actually, it was a psychological exam, supposedly screening for seizure disorders (complex partial seizures). However, it was simply another bad experience with that vague semi-science we call psychology. I think about 20 to 30 percent of psychology / psychiatry is valid and useful. Certainly I don't doubt the existence of clinical depression, mental retardation, or even sociopathy. The brain is incredibly complex, though, and I think a dozen psychologists would offer a dozen "evaluations" of a given individual. (Honestly, I would prune the DSM -- not expand it. Too may things are now considered medical or mental health "conditions" needing treatment.) Today's exam relied heavily on the speed and accuracy with which I could use my right hand. The pain was excruciating during the exam, eventually becoming too unbearable to continue testing. As I mentioned before the testing, my rig...

Whether I consider my oddities "autistic" or "birth trauma" (I vote for "complex entry into life"), I am certainly not normal. My wife will attest to this. Parents of special education students ask if I would want to be "cured" of my oddities. This question is one with which I struggle, since I both value my abilities and curse my lack of social skills. If being "normal" would mean that I must surrender some of my skills, then I would not be me. To not be gifted, a loaded word I admit, means to surrender analytical skills I value and admire in others. I admire scientists. I admire men and women solving problems with thought and through experimentation. I don't like the idea of being as ignorant and sloppy as the people I encounter. I also have no desire to be as slick and manipulative as the most successful people I have met. I'd rather be honest and know myself. I believe there is a point at which great salesman loses...

I have hated this summer. I resent the house because working on it causes way too much physical pain for too little progress. I hate using the sink in the bathroom, as it reminds me of the time and pain wasted on a sink that still isn't to code. I hate the kitchen, with various things incomplete or missing. I really despise the hallway, where there's no flooring and the open closet is a mess from water damage. The house is much too small "per floor" since I can no longer use the stairs without wanting to scream in pain. This means my exercise bike, many books, my desk, and much of my writings are out of reach for me. I'm not about to use the stairs if I can avoid them. It was bad enough on my back for the three weeks essential items were downstairs. I want a house that is "normal" to my experiences: a nice, Southwest-style home with a single large floor. No stairs. An attached garage, too. The location bothers me. A lot. I hate driving any more...

Completing tasks is a real challenge for me. This is definitely why I was diagnosed with ADHD years before high-functioning autism became the official label for my odd mix of traits. ADHD with seizures, repetitive movements, and a long list of other ill-fitting characteristics. I have a lot of incomplete projects dating back more than two decades. I also have many completed projects I never seriously tried to publish or distribute. In other words, I do a lot of writing, sketching, programming, and planning without following through to the expected conclusion. What's strange is that I do complete, with a lot of anxiety from a perfectionist streak, school work, magazine columns, grant applications, handouts for my students, and projects assigned by other employers. So, it isn't everything I don't complete... just the projects I seem to really want to complete for myself. My perfectionism is limited (somewhat) by deadlines, but when there is no deadline, I never ...

Many of the postings to blogs, bulletin boards, forums, and other forms of online expression I have read seem to reflect serious depression. Leaving aside the question of does online use cause depression or reflect it, I sense the postings do reveal a problem experienced by many HFA/AS individuals. When people gather and complain, it might be that each new posting is simply venting. There is a sense that if others can complain, so can I. But I believe it is much deeper for autistic individuals. How can you not be depressed at time when social connections are difficult? How can you not wonder what it is like to understand vocal tones and facial expressions without having to memorize pages from books on body language? How can you not feel isolated when so many people avoid you? Put simply, when your social skills are the ones most affected by your disability, it is only logical that you will suffer some periods of depression related to the isolation we experience. Ever...

As I compile my notes for essays and a book, I realize how much easier it is to be considered "different" your entire life versus a late-in-life diagnosis of Asperger's Syndrome. The more I read about and communicate with AS students and adults, the more I appreciate their unique experiences. I was never considered normal, so my eccentricities were tolerated. Independent study was offered more than once, which I loved. When you are perceived as perfectly normal, I imagine things must be more difficult. No one believes you when you complain about sounds, smells, textures, or colors. You're considered moody or depressed. Any difficulties in class are confused with learning disabilities or ADD. At least no one expected normalcy from me.