Thursday, August 29, 2013

Your Autistic College Student: Letting Go

One of the questions I was asked this week was how colleges should deal with autistic students who are too tethered to their parents. A college advisor explained to me that she has met too many students on the autism spectrum living on campus who rush home every weekend, and sometimes during the week, instead of making the transition to independent living.

"The parents make matters even worse. They call us, they call residential life, they call professors, and they'll even call deans. They don't trust us and they don't trust their children."

Okay, parents. Stop it! Just STOP IT. LET GO.

As your children head back to school, at all grade levels, you need to accept that your child will stumble a few times throughout the year. He or she will have to deal with stressors that are academic and social. The classroom and the campus are social settings with plenty of difficult lessons for all students.

Your job as a parent is to be a safety net, not a safety harness. Let your child, especially as he or she approaches adulthood, fail. Yes, let your child fail sometimes. Don't try to shelter your child or hide the painful realities of life. Things go wrong and we all get hurt. Until you have experienced those tough moments, you don't learn how to deal with them. And someday, parents, you won't be around every hour of every day to shield an autistic adult from pain.

The advisor told me of parents who would tell college students to not participate in intramural sports, to not go on group trips, and to not "hang out" with other students outside class. The parents had to approve all club participation and all other extracurricular activities. The student wasn't free to make any choices: good or bad.

Normal college students screw up. There's no nice way to express it. When I was in college, I experimented with all the things college students do. I know my parents are not thrilled to know I drank (but not cheap beer, which is disgusting), that I tried smoking (still hate cigarettes: they stink), and that I was a perfectly normal, stupid college kid. And that was all part of life.

My parents were available, as supportive parents are, but I went to school four hours away from home. I learned I needed to rely on campus advisors, faculty mentors, and my classmates. No, things were not easy. I made mistakes. My grades were not what they should have been many semesters because I do have problems with focus when I'm bored. And yet, I survived to complete two of my undergraduate degrees.

I did screw up in ways that still disappoint me. I didn't complete my "clear credential" for teaching K-12 because I couldn't navigate the School of Education's social maze. (It was personality-driven, no matter how good a student you were. And being male was a strike against me. A professor told me that men shouldn't teach some subjects and some grades. She retired many years ago, now.) I didn't do as much with student organizations as I should have, since my social skills were lousy. And, I worked way too many hours, but college is expensive.

For all the challenges, my undergraduate experience helped me become an independent adult. That's a large part of the college experience.

Let go. Be available. Trust the university to support your child. Or, find another academic home.

Can or should every student attend a four-year university and live on campus? Absolutely not. Many of the autistic students I have met should attend a community college and live at home. Some should attend commuter schools, not merely for the supports but because the cost of college is ridiculous. Attending a residential university is not an option for all students, including many autistics.

If a student can academically, financially, and emotionally attend a good university, then he or she should try it. If not, then don't attend the university while trying to treat the experience like attending a community college. Other students know when a peer's parents are hovering about, helicopter parents trying to plan everything. It leads to further social alienation.

Let your student have as much freedom as possible, however much that is. And you discover what is "enough" when the child does experience some failures and disappointments. That's an invaluable education: life skills.

And, while I don't teach K-12, I am a professor. Things turned out pretty well after some lousy learning experiences.

Tuesday, August 27, 2013

Writing and Autism: A Privileged Voice?

Pencils
Pencils (Photo credit: snowblink)
Writing well does give one a louder, more effective public voice than other individuals. We know Temple Grandin, Dawn Prince Hughes, Stephen Shore, Lars Perner and others because they are autistics with books. Like most writers, these men and women work with editors, publicists, agents, and others to refine their works and reach out to the public. These are not normal autistic experiences, but they aren't normal experiences for anyone.

It isn't that autistics who write memoirs are rare, there are dozens of autistic memoirs and essays in print and in digital forms. But, these are not the voices of all autistics or even most autistics.

That's really no different from any other group with a few noted writers or public figures. Writers are unusual, period. Feminist writers don't represent all women. Black writers don't represent all African-Americans or other people of color. Gay writers don't represent the entire LGBT community. Having the ability to write about anything is unusual, and writing well is a skill that doesn't interest everyone.

And so, when the parent of an autistic child mentioned that I have a "privileged" voice as a writer, I didn't deny it or try to persuade the parent that my views were representative of anything beyond my own experiences.

I can write. Even when I have trouble speaking, I can write, however slowly. I have been writing short stories, essays, poetry, plays, and whatever else I can since I was in elementary school. That's a lot of practice with words, and I continue to practice writing on a daily basis. It is what I do.

Writing reaches more people than some forms of self-expression. That's unfortunate (though good for me), because there are autistic composers, painters, sculptures, photographers, and so on. If there is an art form, there is a talented autistic person we should celebrate as much as the autistic authors.

I live for words, and I wish I could help more people learn to write effectively. It is a tool for advocacy and understanding. It is also, like any other art, a skill that must be developed and practiced. Few people are natural storytellers, just as few people have perfect pitch and innate musical talent. But, many of us can learn to be "good enough" at something if we invest the time and energy. That includes the time necessary to be good writers.

Autism impairs communication. There are studies exploring how autistic writers differ from other writers. But, I find that writing is easier than speaking to groups or trying to advocate in other ways.

Am I privileged when compared to a non-verbal autistic? Absolutely. Am I representative of the autistic community? I very much doubt it. Admitting that my skills are rare among the general public and among those with disabilities is a part of my personal advocacy: reminding people that everyone is different.

I cannot "write for" other autistics, as that parent rightfully suggested. I am privileged to have graduated high school, earned college degrees, and to be married to a wonderful partner. There was a mix of working hard and taking advantage of opportunities that became available to me. My words can only be mine, and I know that.

Once I admit that, there's no need to continually remind me that I'm only writing from a limited perspective. Every writer is doing the same.
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Friday, August 23, 2013

Support Group Suggestions

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?

By discussing accomplishments, positive changes, and future plans, the groups I've met could reinforce the great things in life. Yes, we all get depressed and angry, but it is unhealthy to spend most of your waking hours upset and bitter.

Yes, I fall into the trap of being negative. I share a lot of negative events on this blog and people don't always know the positive things I am doing to offset the negatives. Maybe I need to share more of the positives. I worry that sounding too much like a cheerleader for myself might offend some readers, and it wouldn't be very humble.

When you let the negatives define you, it becomes much harder to be a positive person.

I don't like being autistic, and I admit that. But the autistic me isn't the professor me, the writer me, the husband me, the kitty "dad" me, or any of the other aspects of me. Keep that in mind as you read the blog and if you have positive questions about my life, ask them.

My new job is great, at a wonderful university. I am speaking to groups again, I'm mentoring some young people, and I believe my life itself is a contrast to stereotypes about autism.

Remember that every morning you wake is another chance to be a better person.

Tuesday, August 20, 2013

Tell Us What's Great about Your Autism! Yeah, right…

"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 great about my autism? It doesn't impair my daily life as much as autism and other disabilities might. Autism is something I struggle to overcome and work around, not something I embrace like a badge of honor. I am not ashamed of saying that what makes me different from many self-advocates is that I'll loudly proclaim I wish I could be more "normal" in ways that would improve my life and make the lives of others easier. That's not disliking who I am either, it is disliking the seizures, migraines, ringing in my ears, and other daily frustrations.

I've written so often on this, that I'll resort to quoting myself:
I don't deny my limits. I know I cannot do some things.

There are definitely physical impairments I have that might not apply universally. To assume I am only writing of my unique neurology is a mistake. I am physically disabled; these are mild limits and do not affect my daily existence.

The neurological differences I face are not a "gift" most days.

In "neuro-diversity" communities, there are those who deny autism is anything more than a difference. These are a minority, but a vocal minority nonetheless. The logic of these activists is to challenge and resist public misconceptions of autism, especially within the high-functioning / Asperger's syndrome subcategories.

It is definitely a disability to be unable to handle mass transit, many public spaces, bright lights, loud sounds, strong smells, and so on. It is not a mere "difference" to be stuck at home many days, unable to tolerate the sensory overload of normal existence.

Yes, I am different, but I'm also disabled.
— from http://theautisticme.blogspot.com/2010/06/different-vs-disabled.html
As I've explained, "The Autistic Me" is only a portion of me — a reference to the annoyances of autism and the frustration that accompanies some of the traits. I would rather be known for my creative writing, teaching, and academic scholarship. Being known for being autistic? No thanks. I don't want special treatment; don't let me use "autism" as an excuse for any failings that I can overcome.

Let other people embrace and celebrate autism. I'm not rejecting it, but I'm always working to understand, compensate, and overcome. Success is not built on surrendering to or accepting your weaknesses. Some people, including myself, simply have to work harder — much harder — at some aspects of daily life.
1. I am a "success" neither because of nor in spite of my "autistic" traits. I am a success because my wife, parents, extended family, and friends help me and I try to help them when I can. Success is a team effort, whether you're "normal" or not. Plus, no one is normal.

2. Autism does not define what I do for a living as a writer or teacher. I'm not in charge of anything autism-related at work, and the freelance writing seldom addresses autism or other disabilities.

3. Autism is a "disability" not a blessing or some special gift. So what? The list of human "impairments" is long, and almost everyone begins life and ends life with some level of impairment. Find ways to adapt, not ways to surrender.

4. Stereotypes of autism are unhelpful. The savant mythology, in particular, follows many of the college students I meet. They have to explain to peers, and some instructors, that autism is not synonymous with "Rain Man." Unfortunately, the media love unusual stories, so the "freaks and geeks" become the template for autism.
— from http://theautisticme.blogspot.com/2011/11/autistics-speaking-day.html
As I have also written, I cannot celebrate "autism" because the label includes serious, horrible, physical, intellectual, and emotional impairments. When you watch a non-verbal teenager pulling out hair, biting herself, you can't celebrate that. I recently watched through the window of a steel door as a young adult rocked, screamed, and spit. I asked what he had done to be so punished. I certainly do not support isolation, restraints, or any harsh interventions. The medical supervisor told me the young man had bitten the face of another resident. I can't even begin to describe the horror and disgust I felt.

What might have caused someone to bite another person's face? Was there a misunderstanding? A sensory overload? An urge to communicate, but not the means? I have no idea, and I don't believe the facility staff had a clue, either.

So, what's great about my autism is that it isn't the autism of someone in a medical facility. I am able to speak up and ask questions and try to help that person and others. Celebrating autism isn't going to help, though. Understanding it better might.

I wish nobody had to be secured in an isolated room. Ever. There has to be a better way to help people. But is that way through "acceptance" or something else? I happen to believe the answers will be found in medical research. Yet, even calling for more research sometimes angers a small segment of the activist community.

Nothing's great about autism. It simply is a label for some of my traits. Let others celebrate and call autism "great." I'll stick to calling it a part of my existence. The traits have shaped my life, and rarely for the better.

Tuesday, August 13, 2013

Monochrome Autism Advocacy?

When I attend events like the recent Autism Society national conference, it reminds me that we do a lousy job reaching out to parents and providers with a broader set of experiences. Bluntly, the attendees tend to be white, middle-class, and female. That doesn't mean that there are not minority voices, or that there aren't some fathers present, but the gatherings are not reflective of our communities richness.

Conferences are expensive to attend, time-consuming, and not really something I do for social purposes. I admittedly skip the "town hall" gatherings, the fundraising gala, and other events. I walk the vendor exhibits when the hall is least crowded, often right after lunch. So, the events are not for everyone. Yet, they shouldn't seem so exclusive, either.

How can we attract more voices to the conference? I'm not sure, but when you are an insular group, even without meaning to be exclusive, you don't learn as much as you could.

The problem is, any "solution" sounds condescending. Scholarships and grants might help, but how would those be awarded? Some already exist, yet they don't seem to be adding to the diversity. Is there a better solution?

Fathers need to attend. People of all ethnicities, religious traditions, and economic backgrounds need to attend. We need to gather and learn.

Surely, I'm not the only person concerned that the "faces of autism" panel was pretty homogeneous. That's not to dismiss the importance of our voices, but a recognition that there are other voices, too.

Sunday, August 11, 2013

Muttley Kitty

Mutt, aka Muttley Kitty, Muttles, Muttford, and Twitchy, passed away on Thursday, August 8, 2013, at 9:45 a.m., after a long battle with cancer, lifelong heart issues, and age. Born May 1, 1995, Mutt was 18 years, three months old.

July 1995, with Mutt (front), J.C. playing with Alex, and Mimi Kitty keeping on eye on her adopted boys:


Mutt was just amazing. He was our little engineer, able to find his way to high spots and to open cupboard doors.

Before leaving California: Mutt, with J.C. Kitty on Mom's bed:


May, 2013, on our new bed frame, in the new house, looking pretty handsome for a kitty just turned 18:


Mutt wasn't doing well for most of 2013, but he had these few hours each week when he was still alert and the same old Muttley we always loved. We had to help him onto the bed, because even the step we bought for him became difficult to navigate. He really needed rails.

June, 2013: Sleeping next to his buddy, Misty Kitty:


Misty Kitty adored Mutt and would "guide" him, kneed him, and try to give him baths. She would curl up next to us while we fed Mutt by hand. She watched over him the last few weeks.

Monday, August 5, 2013

Autism and Child Pornography: A Toxic Combination - The Daily Beast

English: Temple Grandin at a book signing at R...
English: Temple Grandin at a book signing at Rochester Community and Technical College in Rochester, Minnesota (Photo credit: Wikipedia)
Autism support specialist Heather Conroy (http://www.hconroyconsulting.com) and I are working on several short "pocket guides" for young adults on the autism spectrum. Our first guide, which we hope to have to publishers later this year, deals with sexuality and relationship in a frank (blunt!) way.

While I strongly disagree with some claims in this article, I have dealt with autistics (male and female) with obsessive online habits (usually gaming, but often in other ways, too). Stories like the following are why our book and others are needed by autistics, families, and support providers:
Autism and Child Pornography: A Toxic Combination - The Daily Beast
Aug 5, 2013 4:45 AM EDT 
It’s a disturbing trend we cannot ignore. Eustacia Cutler, mother of autism advocate Temple Grandin, on why autistic men are viewing child pornography—and being labeled sex offenders. 
Though now equipped with a full-grown body and full-grown sexual drive, many ASD males are stuck emotionally at a prepubescent age. They look like grown men, but inside they’re only 10 years old. They don’t want adults to show them how sex is done; they want 10-year-olds to show them. Back in school when they were little and the other kids played “you show me yours and I’ll show you mine,” ASDs were left out. Now at last they’ve found a way to join the old childhood game and it’s with their trusty friend, the computer. 
Except that’s not how the law sees it. Or how we see it. There are gaps not only in our legal appraisal of this bind, but also in our view of the sexual dynamics of ASDs. 
To quote autism psychologist and researcher Gary Mesibov: “We often find that young men with ASD are functioning intellectually at average, or even above average levels. However, their social and interpersonal level is that of a 10- or 11-year-old…I think this explains why their social-sexual preferences are to observe girls at this age, just as typical 10- or 11-year-old boys prefer interacting, flirting, and thinking about sexual relationships with 10- or 11-year-old girls.”
This article is absurd on some levels, leaping to conclusions that require more quantitative support.

Heather and I have dealt with parents taking away "computer privileges" and punishing young men and women for looking at pictures and videos of adults online. This is often an overreaction to a normal human behavior. Men and women enjoy erotica and mature content. We too often make sexuality and curiosity something "dirty" or "bad" when it isn't.

Here's the blunt truth: I like photos of women. Most men do. While I would rather read or watch a romantic movie (far more "erotic" to me), I know that men and women also enjoy more graphic visual stimulation. Personally, I cannot bear to view any depiction of violence, abuse, bullying, or generally aggressive behavior — such things upset me greatly, so most "porn" is of absolutely no interest to me. I like romance and caring, loving relationships.

Anything, absolutely anything, that involves children in age-inappropriate behaviors, upsets me because I think of it as the worst kind of emotional and physical abuse. Too many of the students I have met were abused, because students with special needs are easy targets.

The challenge is to teach autistics, and all young people, what is and isn't legal, appropriate, and healthy.

More on this in the future.
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Sunday, August 4, 2013

Autism and Asperger's syndrome may be biologically different, study finds - Los Angeles LA | Examiner.com

My wife and I have long thought "autism" and "Asperger's Syndrome" were distinct, based on observing, meeting, and interviewing people with diagnoses within the various autism spectrum categories. There is research finding high-fucntioning autistics and Asperger's are distinct, as well, which I have cited in my own research of learning patterns and accommodation needs.
Autism and Asperger's syndrome may be biologically different, study finds - Los Angeles LA | Examiner.com: There were some similarities in the brain patterns of the Asperger's and ASD participants, namely low connectivity in the region of the brain associated with language. However, the scientists noted stronger connectivity in regions of the brain than both the ASD and control groups.
My diagnosis was high-fucntioning autism (HFA) which is not an official DSM-IV category, but is used by many clinicians and researchers. Often, the distinctions made by clinicians deal with language skills and other developmental delays.

The personality differences I notice might be noticeable to clinicians. I've found AS students and young adults to be more prone to depression, for example, because they have a greater desire for social interactions. I also find that students with AS have more conflicts in the classroom, while HFA students seem to avoid conflict. These are only generalizations, but they might reflect neurological differences. It would be interesting for researchers to pursue these questions.

I have cited some studies finding differences in my academic papers and I am convinced the differences are quite real and distinct.

Ozonoff, S., Rogers, S. J. and Pennington, B. F. (1991), Asperger's Syndrome: Evidence of an Empirical Distinction from High-Functioning Autism. Journal of Child Psychology and Psychiatry, 32: 1107–1122. doi: 10.1111/j.1469-7610.1991.tb00352.x

Howlin, P. (2003), Outcome in High-Functioning Adults with Autism with and Without Early Language Delays: Implications for the Differentiation Between Autism and Asperger Syndrome. Journal of Autism and Developmental Disorders, 0162-3257. v 33 n.1. doi: 10.1023/A:1022270118899