The Autistic Me

Employment history and various job searches demonstrate how difficult it has been for me to locate and retain employment. In September, Slate carried the following article by Sarah Carr, using "Leigh" as an example of the hurdles facing autistic adults. The Tricky Path to Employment Is Trickier When You're Autistic Autistic children grow up to be autistic adults. Our society doesn't give them the support they need. By Sarah Carr Leigh epitomizes the underemployed. The 39-year-old has a master's degree in library science from a top-ranked school, years of experience working the circulation desk in a Boston library, and an IQ of 145. He is reliable and considerate, and he works hard. Yet for the past eight years, since he lost his salaried Boston library job due to austerity measures, the only permanent job Leigh has landed is at the T.J. Maxx near his mother's home on Cape Cod. He works part time dusting, vacuuming, and washing the mirrors, and he is...

A spinal nerve with its anterior and posterior roots. (Photo credit: Wikipedia ) My MFA in Film and Digital Technology was supposed to be finished in December, 2016. It wasn't. Instead, I had one infection after another, anemia, emergency room visits, blood and iron transfusions, a pinched spinal nerve , surgery… and more infections. Add in a car accident and family things and life overtook my life plans. This happens, but I do not like it when a schedule slips. Unfortunately, lots of my scheduled tasks have slipped. Now, I need to finish my MFA paper and film, a screenplay that's past-due, and several other projects. Plus, I need to find a job after I finish the degree. When I feel well, I need to work a lot to make up for the time I have lost and will inevitably lose in the future. The panic caused by being off schedule causes my schedule to slip more, but I'm doing my best not to panic. It's hard for me to not be distracted by the distraction th...

"Tell us what's great about your autism! What's your special gift or talent? What's your superpower?" Really? Clearly the sender (probably using an automated mailing list) isn't familiar with my blog, public statements, or other writings. I don't have superpowers, no special gifts, and no unusual talents that I would attribute only or primarily to my autistic traits. Some talents might be associated with autistic traits, but they might also be tangentially related to genius, effort, parental upbringing, or who knows what else. I've written repeatedly that I do not consider autism a gift. Not even close. I don't buy into the whole "Being disabled forced me to be better!" sloganeering. If you had to be injured to learn to be nice to other people, or an injury led you to some belief in a Supreme Purpose to life, that's fine. But my autistic traits are generally a pain to live with, literally and figuratively. Tell you what's...

"You don't understand…." When a parent starts a conversation with those words, I know to anticipate a long list of what I don't appreciate as the person with challenges, compared to the parent of a disabled child. It is both a logical and an absurd statement. I've never been another color, another gender, another nationality, or another religion — yet I would assume most people try to understand and appreciate the experiences of people from other groups. I know my childhood friends with Spanish surnames were treated unfairly by some teachers. I know people assume I know about cars, while it is my wife who is the engineer. You can appreciate without total understanding — because even within a group the experiences differ. No, I am not a parent. I am not a caregiver. But, to assume I don't empathize is to accept one of the worst stereotypes of both autism spectrum disorders and mental giftedness. While I might not translate empathy quickly, I definitely ...

My goal with the new year was to be a bit more entertaining as a writer. It is hard to think about being entertaining when I'm sitting on a "gel pad" cushion with one foot elevated and typing with one eye closed. Any humor at that point is unintentional. I'm not doing well this week. Something is wrong with my left foot, so I'm limping again. I used the cane last night. My right eye isn't working either. With headaches, back and shoulder pain, blood loss, and more, I need a break. Pain won Tuesday night. I crashed and didn't crawl out of bed until 11 am on Wednesday. It is frustrating when my body fails me because the pain starts to interfere with thinking clearly. I tolerate the physical limits until my body interferes with my mind. Thinking trumps walking or seeing perfectly. I can deal with a limp. I cannot stand to sense my mind is clouded and unable to focus. I never like it when medications make my mind feel slow, and I really dislike it when p...

A week ago I travelled into Pittsburgh, PA, to meet with Heather and Paula from AHEADD, an organization that provides additional supports beyond what colleges and universities offer to students with cognitive differences. These were impressive and energetic women dedicated to working with students. Heather earned an MSW from the University of Pittsburgh and Paula has an M.Ed from Ohio University. The sad reality is that many of our colleges and universities do not have such qualified people working with students with ASDs, ADD/ADHD or other neurological challenges. AHEADD was founded because even great universities cannot meet the perceived needs of some students: Carolyn Komich Hare founded AHEADD in 2002, when she piloted the program in response to a parent's inquiry regarding the availability of specialized support for her daughter, a student with Asperger's Syndrome who would be returning to Carnegie Mellon University following a year's leave.  AHEADD Provides: Coa...

Maybe I'm even more of a curmudgeon after three hours of sleep, but during an exchange with the parent of an autistic child early this morning I found myself thinking, "How stupid can you be?" That is what I thought, too. Not "how ignorant" or "how mistaken" but bluntly and definitively "how stupid" this parent seemed at that moment. I know the following is a rambling post. I'm tired and fuming a bit. If the rant is incoherent, I apologize; this is definitely a rant. Being exhausted, I'm probably not thinking as clearly as I should, but I find myself at odds with a vocal group of parents somewhat regularly. The particular topic of debate doesn't matter at the moment; what matters is that the feuding camps of the "autism community" are precisely that: feuding camps. I do not pretend to represent individuals with Kanner's classic autism disorder. I do not pretend to be a parent. I am precisely what I claim to be: one p...

The following is an outline I use when speaking to faculty, students, and parents about autism spectrum disorders and the legal rights of students within the university. My last post on university access and students with ASDs resulted in a conversation more about diagnoses than services, so I hope this helps clarify the nature of the university experience. I will expand and edit this post if necessary and as information changes. I would rather update this post than have "outdated" information online in the future. These are presentation notes, not an essay or academic article. Still, the information should be helpful. Scope of the Challenge There are many students entering our colleges and universities with appropriate documentation of autism spectrum disorders. Proper documentation legally qualifies a student to some supports from the school. Post-secondary students with disabilities represent 11 percent of enrollment (GAO, 2009).  High-functioning, college-capabl...

Please see my newer entry on this subject: http://theautisticme.blogspot.com/2011/05/autism-and-higher-education-rights.html This post is now locked. Unfortunately, the post did not lead to the intended conversation on what parents and students might want a college to do for students with ASDs. I might try again in a few months. I need to write something that clearly explains what I am seeking to learn from students and parents. As I prepare to relocate and start a new university position, I am also considering how I might advocate for current and future students. (Technically, the post is "official" in August -- but I don't foresee any complications.) Professors are in a complicated position, because students are protected by the Family Educational Rights and Privacy Act (FERPA). When I have received notification that a student has special needs, the disability services of the school only indicated what the needs were -- not the underlying reason for accommodations. ...

I haven't had enough time to work on various Web projects, including updates to the various blogs. This is one of those months when the rush of activity has a direction and purpose, though it has been exhausting. For several months, I've been interviewing with a mix of colleges, universities, and corporations. I have struggled to find that ideal alignment of my traits with a potential employer. The job hunt was officially concluded in March after I decided that 200+ applications was enough; one last batch of interviews and then I was going to focus entirely on freelance work. While trying to focus on consulting and creative writing the phone started to ring (literally). I experienced a flurry of phone interviews, e-mail follow-ups, and travelled to the Northeast. I had to schedule the job-related activities around speaking, editing a book draft, and general life activities. I hate disorder, but that's how life is. The Lede: A private university has extended an interesting j...

It happens in every support group, online or in real life. It happens at conferences and on Web-based blogs. For whatever reason, there is eventually the "trump card" that someone uses to end a discussion: Your life / your child's life with [autism | other challenge(s)] is not nearly as bad as my life / my child's life with [autism | other challenge(s)]. Someone will feel compelled to respond, "No my life is worse!" The conversation spirals downward, a complete celebration of misery, despair, and self-pity. About that point, I exit and seek out something animated to watch -- from Disney to Warner Bros, anything is better than people competing to be the most damaged human in the group. The problem is that most of us have an impulse to respond to such nonsense. We don't like to have our own experiences discounted by someone else. It feels lousy to be dismissed, especially if it is by someone unfamiliar with our personal stories. Too often, the person co...

The workplace can be a social minefield. Building Collegial Relationships Colleagues tend to come later in life, when we have professional careers or volunteer to work for organizations. However, colleagues are similar enough to peers that I am discussing the two together. Colleagues range from those with whom we work daily to those we might consider more similar to acquaintances. Because today’s workplaces often require us to shift from team to team, or from one location to another, it is always best to consider the possibility that any colleague can become a close coworker. I’ve met successful people with ASDs who accomplish great things and do so without any impulse to impress colleagues or develop social connections. Colleagues respect these individuals, I hope, though it can be difficult for me or other autistics to determine how much we are respected by coworkers. My colleagues at the universities and colleges where I have taught can be divided into close and distant colleagues. ...

Another section of my book on relationships and autism. I'll be adding citations to the final edition. For now, you can read the bibliography on this blog for additional resources I have consulted. Desires and Needs Human relationships come down to our desires and our needs as they relate to social connections. Psychologists and social experts can and do argue over the distinction between a desire and need, and I realize plenty of scientists assert the only real “needs” are biological. I am not using the biological definitions in this text, I’m relying on terms from marriage and family counselors. A psychology need is something necessary to develop a sense of self. If you want to learn more about needs, there are several books and websites with information on Abraham Maslow’s theories. By contrast, a desire is something we want, but that is unessential to the development of self-awareness. Philosophers also consider desires versus needs.  Allow me another moment of blunt honesty: ...

How is self-advocacy affecting the word "autistic" and perceptions of what autism is? I debated myself about posting this. However, it is part of the book draft I am preparing to release and I consider it an important discussion to have. I know someone won't like what I've written, but maybe it can get people thinking about language. Autistic vs. with Autism Self-identity is part of how we build relationships and connections. An important development over the last decade is the rise of self-described “autistic activists” as a community. However, this has also caused tension. One of the many heated debates within autism communities is the proper term to use for individuals with autism spectrum disorders. I use a variety of constructs in this book. This isn’t part of an agenda. No matter which term I use, I realize someone will be offended. “Autistic” has the advantage of recognizing that autism is technically a descriptive label without an identified cause. We know t...