Wednesday, March 30, 2011

Autism and Life after High School

I would like to thank St. Cloud Area School District 742 for a wonderful audience of high school students, teachers, and support staff. I spoke at Apollo High School Wednesday morning and it was a great audience. The topic of my presentation was "Life after High School," something that every junior and senior can't wait to experience.

When we started talking about employment, I suggested it is in your best interest for legal reasons to disclose any disability to the human resource specialists at your organization. I also encourage students to contact the Disability Services at any colleges or universities they attend. There are some good reasons to be proactive.

"Nothing about my disability affects my job," the student replied (paraphrasing).

I hear variations of this from students, especially young adults with "hidden" disabilities. I've had students with seizure disorders, ASDs, migraines, auditory processing impairments, and learning disabilities tell me, "I'm not disabled."

Okay, we can argue the semantics of "disabled" and "differently abled" and whatever else you prefer, but the short response is: legally you are protected by the Americans with Disabilities Act, not the Americans with Different Abilities Act or the Americans of Diverse Physical Experiences Act. So, like it or not, you have to disclose a *disability* to protect yourself legally and defend your rights in the workplace or post-secondary academic setting.

Until I started my graduate degree, I had never bluntly declared myself disabled. Why would I do that? But, the reality is my parents certainly informed my K-12 schools and made arrangements to accommodate my physical and neurological differences.

"Why should I tell anyone?" students will ask.

Now, I can answer from the perspective of an employer, an educator, and an adult with lots of life experiences.

1) Your own safety.

If you have a seizure disorder, stimuli sensitivity, migraines, autism disorder, or any other impairment that can cause physical reactions, someone should be aware of this. Even if your last seizure was years ago, you simply cannot predict such things. I've gone most of a year without a serious migraine and months at a time without a bad palsy episode, but those things do happen. No employer or school can be held responsible for *not knowing* what you didn't tell them.

In my case, I tell the appropriate people that I have a palsy and partial paralysis. I also explain any other issues that could be problematic. That does not mean I plan to have problems. In fact, I hope to never have a serious issue at work. I tell students and parents this is like making back-up copies of data from your computer: when you do backup data, your computer never crashes. There's some sort of paradox that the more you prepare, the less likely a real emergency becomes.

2) The safety of others.

Imagine if my partially paralyzed arm were to palsy while I was carrying a desktop computer or laser printer. It would fall, definitely, and potentially harm not only me but anyone too close to me. There are some physical limitations that can and do increase the potential for unintentionally putting others at risk.

Your coworkers, clients, classmates, et alii, deserve to be protected from any reasonably preventable risk. A school, organization, or employer has the right to know if your disability could present any risk. More importantly, this is not something you should determine on your own -- you should allow an HR or DS specialist the opportunity to help you make this determination.

3) No, life is not "fair."

Yes, some people will judge you if you disclose a disability. That's lousy, but it is a fact. I know we all want to change that and help people become more tolerant. If someone doesn't want to work with you because you're disabled, that's their loss -- not yours.

4) Do I give up?

Don't give up when a company or school tells you that they cannot accommodate your disability. I work with some great autism experts, occupational therapists, and others who help me answer questions employers and schools have.

Because of my paralysis, I cannot always lift heavy objects "properly" as defined by federal occupational safety regulations. However, a physical therapist taught me about various (cheap) alternatives I could present to employers, even offering to supply my own adaptations. I use a cart to move my supplies from one classroom to another, for example. I bought the cart and it is a great device. I love it. The school is spared any hassle, and I'm not going to drop anything.

Disability Services at universities have experts in how to accommodate special needs. Most public school districts also have such experts. Meet with these people and prepare potential answers for concerned employers or university faculty. If you tell an employer, "I have a visual impairment, but I can provide my own screen filter," that demonstrates how serious you are about a job.

One student pointed out, "I shouldn't have to pay to work somewhere." No, legally you don't have to make your own accommodations, within some reason. However, don't we buy our own glasses? Don't I buy my own cane to use? I pay for all sorts of little conveniences. We can debate what is or isn't reasonable, but at least try to reduce any and all reasons someone might use to not hire you.

I know this topic deserves more attention and deeper thought. I'm not advocating for the view that employers and schools should do nothing. Quite the opposite is true. I think an employer should do anything possible to hire and keep the best employees, especially those with special needs. Why wouldn't I provide special technologies to help accommodate an outstanding employee? Heck, that employee is going to help the company or organization serve clients well.

But, you have to be an open and honest advocate for yourself. You don't have to disclose every detail of every limitation with which you live. However, to fully obtain legal protections requires telling the appropriate experts at an employer or school. They really are there to help you!

Note: I'm going to put more of these presentations online, since they seem to be popular. I have DVDs and Keynote presentations, so the effort shouldn't take more than a few weeks to get something online. Unfortunately, I am swamped right now with a long to-do list and need to tackle items in order or I'll never get any one project completed. The post I planned on writing and autism will be composed tonight. Sorry for that delay, too!

Monday, March 28, 2011

Dealing with Travel

Friday I had to make a round-trip to Pittsburgh, via commuter jet. I hate flying. I hate the supposed "security" measures that cause long lines for minimal actual security. I hate the cramped jets, too. Flying simply isn't fun -- it is hours of stress.

I didn't have much choice, either. I don't belong to any "Sky Miles" program, so I have to deal with the longer lines. I don't like to fly enough to want to have frequent flier miles. Ideally, I wouldn't fly more than once every two or three years. I didn't have to go through any new scanners, didn't have to be carefully inspected, etc. No, I just had to stand in a security line for an hour and ten minutes. That's insane. Of course people get angry with the system: it is stupid.

The smell of airline Biscoff cookies (http://www.biscoff.com/) still lingers in my mind. I don't mind the cookies, but the mix of peanut and cookie smell on the plane was overwhelming. Actually, I love the cookies. I simply hate the sounds and smells in an enclosed space.

People with too much cologne or perfume are a real nuisance on planes. The mix of various scents, some in conflict with each other, was headache inducing. A young lady nearby was listening to music that reached me at the same volume of my home stereo. It wasn't good music, either. If the flight lasted more than two hours, I would have been unable to function at all.

I don't travel well no matter how I travel. I like my own bed. I like my house. I like my routines. Travel upsets everything. It requires two or three days to get back to normal, even if I'm merely driving somewhere for a day trip. The exceptions, sometimes, were drives to the California Coast, but that's sort of like staying at home. When you're from Central California, San Luis Obispo and Pismo are really just Valley towns with better views.

But, this was an essential trip and probably worth the stress.

Saturday I was unable to think clearly, so my wife and I went to the local conservatory. It was the start of the Spring Flower Show in the Sunken Gardens. It's hard not to like flowers. I dealt with the trip by reminding myself I'd spend some time in gardens. Sunday was unproductive, as well. I was tense for most of the day, second guessing various aspects of my trip.

The trip was work-related, which is why I endured it. My wife and I won't know the results of the trip for a few weeks. She reminds me that I need to always consider what I want and can do, not what others might believe I should do. I'm still focused on writing, Web work, and some public speaking. Any big change would have to be for a great job.

I'm driving to St. Cloud again this week for a presentation to students from three high schools. I'll certain it will be exhausting, since a long drive hurts my back and shoulders. Still, it is also worth it, I believe. I'd like to think every appearance matters and helps change some views about disability and success.

I'll be back to posting on academic writing and autism in a day or two. I have started the next entry in the series: organizing ideas.

Wednesday, March 23, 2011

Free eBook on Autism and Relationships

This blog post is a bit unusual. I am testing to see if visitors can download a free eBook from this blog. I have linked to the file, which sits on our Web server.

We have successfully tested the ePub edition of A Spectrum of Relationships. Only the abridged ePub edition is available for free at this time, not an Amazon Kindle edition, due to Amazon's policy requesting only full, commercial editions from small publishers. Until the text is revised and edited, I'm not comfortable publishing it formally.
The commercial version will be released for the Amazon Kindle as well as other devices. In fact, it might be released first for the Kindle, if things go as planned.
Downloading an ePub can be a challenge: some browsers try to open the file directly. To download the ePub, you might have to "right-click" and download the linked file. If you have the ePub extension installed, the FireFox browser will open the ePub correctly.

A Spectrum of Relationships (ePub file) [Right-click, Download Linked File]

For FireFox, the ePub reader add-on:

You can read ePub files in several free applications if you prefer those to FireFox:
The ePub format should work well on a Nook, Sony eReader, and iPad, too.

Google Chrome also has several ePub add-ons, but you have to search for "ePub" at:

Sorry that this is a complex process. Please let me know if you are able to download and read the book. All suggestions and corrections will help improve the final, commercial edition of A Spectrum of Relationships.

Tuesday, March 22, 2011

Writing and Autism: Introduction

My wife is now formatting the free ePub edition of A Spectrum of Relationships. Even abridged, it is nearly 80-pages long and should be helpful for parents and teachers working with younger children and teens with autism spectrum disorders. You should be able to download a copy by the end of this week!

I have many writing projects on my to-do list, from the April Script Frenzy to my regular tech column for a California magazine. Recently, a special education teacher sent me an e-mail asking about how I write and how she might use that information to help her students with written assignments.

Exploring writing and autism is going to require more than a short blog post. I also don't want to compose an academic paper that would not help parents and students. Please let me know if this series of postings is lacking in some way.

Various books on education and autism cite writing as one of the more frustrating subjects for autistic students (see references below). When I speak to parents, educators, and students, written assignments are the most common academic challenges. Students excelling in math, science, or history find themselves running into a "brick wall" with writing.

In an era of graduation exit exams, the ability to write an essay is essential to earning a high school diploma in many states. Writing requirements can also be barriers to college entrance, with a third of students at many colleges now in remediation courses for which no college credits are earned. Writing, which I do consider essential, is now the "gatekeeper" academic skill: if you cannot write a formulaic academic essay, you cannot earn a diploma or degree.


Autism and Writing
The first question we should ask is if there is an "autistic" way of writing. Normally, I would reject the notion that autistic writers differ from their peers, but there is a limited amount of scholarship suggesting otherwise. Writers diagnosed with ASDs are considered moderate to high functioning. However, having been diagnosed with an ASD indicates social impairments and some difficulties with "theory of mind" conceptions (Happé, 1991, and Roth, 2007).

The issues identified by researchers Happé and Roth are the same most writing instructors identify among struggling academic writers, regardless of the challenges faced by the student. These issues seem to persist longer, however, in the writings of autistic individuals. Also, some of the issues do not seem to "fade away" with time and practice as they do among the general student population. Some of these issues include:
  • Lacking organization in essays and papers, often jumping from topic to topic without transitions
  • Assuming audience familiarity with information, generally assuming too much prior familiarity with the topic addressed
  • Emphasizing the personal instead of the general, leading to a "first-person" perspective when inappropriate to the genre
  • Failing to explain conclusions, again assuming readers share the author's experiences and views
  • Using figurative language poorly or incorrectly, an issue associated with "undeveloped" metaphorical thinking (and second language learners)
After more than six years of teaching college composition courses, I can attest that these issues are not limited to students with ASDs. Any strategies aiding autistic students are likely to aid all students in a writing course and with written assignments in any course. The advice I offer, therefore, is not for "autistic writers" but for all writers struggling with the same issues.

My blog topics will be: organization, audience analysis, supporting arguments, and mastering genre norms. If you have specific questions be sure to ask and I'll try to address them.
I'm not going to repeat my full reference list. The books and articles listed below are my primary sources for what I will be writing over the next few days.

References


Grandin, Temple. Genius May be an Abnormality: Educating Students with Asperger's Syndrome, or High Functioning Autism. Center for the Study of Autism, 2001.

Happé, Francesca G. "The Autobiographical Writings of Three Asperger Syndrome Adults: Problems of Interpretation and Implications for Theory." Autism and Asperger Syndrome. Ed. Uta Frith. Cambridge; New York: Cambridge University Press, 1991. 207-42.

Harpur, John, Maria Lawlor, and Michael Fitzgerald. Succeeding in College With Asperger Syndrome: A Student Guide. London; New York: J. Kingsley Publishers, 2004.

Howlin, Patricia, Simon Baron-Cohen, and Julie Hadwin. Teaching Children With Autism to Mind-Read: A Practical Guide for Teachers and Parents. Chichester; New York: J. Wiley & Sons, 1999.

Martin, Nicola. "Asperger Syndrome: Empathy is a Two-Way Street." Neurodiversity in Higher Education: Positive Responses to Specific Learning Differences. Ed. David (ed) Pollak. Hoboken, NJ: Wiley, 2009. 149-68.

Pollak, David (ed). Neurodiversity in Higher Education: Positive Responses to Specific Learning Differences. Hoboken, NJ: Wiley, 2009.

Prince-Hughes, Dawn. Aquamarine Blue 5: Personal Stories of College Students With Autism. Athens: Swallow Press/Ohio University Press, 2002.

Roth, Ilona. "Imagination and the Awareness of Self in Autistic Spectrum Poets." Autism and Representation. Ed. Mark Osteen. New York: Routledge, 2007. 145-65.

Symonds, Heather. "Teaching, Learning and Assessment: 'It's Not Like You Think'." Neurodiversity in Higher Education: Positive Responses to Specific Learning Differences. Ed. David (ed) Pollak. Hoboken, NJ: Wiley, 2009. 243-68.

Wolf, Lorraine E, Jane Thierfeld Brown et al. Students With Asperger Syndrome: A Guide for College Personnel. Shawnee Mission, Kan: Autism Asperger Pub. Co, 2009.

Sunday, March 20, 2011

Friends and Autism

The last book excerpt I'll be posting from A Spectrum of Relationships. The free edition will be online soon.


Friendships
In many ways, our friends help define us to ourselves and others. By recognizing the people we want to spend time with and upon whom we rely for emotional support, we also recognize traits we like and want to emulate. According to psychologists, these “reflective” relationships are necessary to develop the “self” into maturity. Truly deep and meaningful friendships are rare for everyone, with some surveys suggesting most Americans have only three or four close friends. However, having a few quality friendships is all we need; numbers do not trump quality. 
Allow me to recognize a difficult reality faced by parents, caregivers, and educators: many individuals with autism do not form close friendships during their lifetimes. Autism impairs the ability to form one-on-one relationships, necessarily affecting friendships. Some adults with ASDs have told me they have no desire, no impulse to seek close friendships. Traditional psychology might suggest these autistic adults are not “mature,” but I believe the truth is more complex. People can and do develop understandings of “self” through observations of people even without close friendships.
One thing I have observed in teens and young adults with ASDs is an inability to accurately assess the differences between friendship and being “used” by peers. I’ve also made this mistake (repeatedly) and assumed someone was a friend when he or she really only wanted to take advantage of my skills, knowledge, or eagerness to please others. I have developed the following criteria for “real” friendships:
• Friends are those people who do things for you without being asked
• Friendship is reciprocal, so if you’re doing all the “giving” it isn’t a friendship
• Friends have other friends, which can be difficult to remember for some with ASDs
• Friendships require effort, but balance
I’m not great at forming or maintaining friendships, as I admit throughout this section of the text. Many autistic individuals tell me the same thing. Friendships aren’t easy for anyone, though, so at least we have company. Remember that ideally friends do the following:
• Complement us, without exceeding our tolerances
• Expand our social network, providing supports and guidance to socializing
• Help interpret the world for us, and interpret us to the world
• Know how to “correct” our social errors without insulting our natures
Because deep friendships are difficult for individuals with ASDs, I remind parents, educators, and caregivers that forming these bonds will take more time for the autistic person in their lives. Also, remember that not every autistic person feels compelled to form close friendships. I’ve had psychologists tell me this is not “healthy,” but that is a reality. I often wonder if “healthy” development is defined too narrowly by mental health professionals. We should accept that some people with ASDs will always prefer minimal close connections to others.

How A Friend Helps
My friends have been important to helping me understand myself and other people. The friends of autistic individuals can help us in countless ways. The belonging a friend offers is only the start. Friends are bridges and buffers, helping us connect to others while also protecting us. Some important examples of how a friend helps include:
• Models social skills and norms in various settings
• Introduces the teen/adult to other potential friends and social situations
• Demonstrates that “me time” is okay, even necessary
• Guides the teen/adult away from stressful situations
• Recognizes potential triggers before it is “too late” for the teen/adult
• Offers comfort when “life” inevitably happens
People generally learn social norms by mimicking parents and peers unconsciously. Psychologists and neurologists theorize “mirror neurons” enable children to mimic the behaviors around them long before basic memories form. Mirroring, research suggests, is instinctive. Some people with ASDs do this well, others have to consciously mimic social skills and norms. Either way, friends are the best models. Observing and interacting with friends also provides an opportunity to learn about ourselves. 
Self-awareness requires a knowledge of our behaviors. For people with autism, learning about how we behave is challenging. Watching our friends, the people we attempt to mimic, helps us understand more about ourselves. 
Most people with ASDs are not extroverts, and those autistics who are sometimes overestimate their own social skills. Friends can help an autistic person connect to social groups. Often, friends share our interests and know of groups and organizations dedicated to those interests. An autistic person might not be to deal with all social gatherings his or her friends enjoy, but every social interaction is valuable. 
Because autism is characterized by isolation, it is easy to forget that everyone needs “me time” and time away from stressful situations. Even friends need time apart, a bit of alone time to recharge emotionally and physically. It is a valuable, though difficult, to realize friends are not always available. Autistic children, and some autistic adults, struggle with the realization friends needing time apart is not a sign of rejection. 
Our friends also guide us away from potentially risky or emotionally damaging situations. Not that some “friends” don’t guide us towards danger, but real friends try to protect us. Since autistic individuals cannot always read situations or people, a friend who can perceive dangers is great to have. Even autistic individuals with good math and logic skills often miscalculate personal risks. 
Truly great friends, including our close family members, learn to recognize those conditions that lead to sensory or emotional overload. Teens with ASDs seem particularly prone to assuming they can tolerate more stimuli than actually is possible. In school or at home, a meltdown or withdrawal might be okay, but in public settings becoming overwhelmed can be frustrating for a teen or adult with autism.  
Of course, “life happens” and our friends are there to help cope with frustration and disappointment. That might be the most important role for friends of autistic individuals. Life with a disability is frustrating; “invisible” disabilities like autism expose people to unique frustrations. Because autism, learning disabilities, and other impairments don’t always appear severe, uninformed people don’t always understand the challenges. Our friends do.

Forming Friendships
Generally, I’m asked about friendships by two groups: teens with ASDs and parents of autistic children. The teens years seem to emphasize friendships and the need to “fit in” with social groups. Parents often ask about friendships because they assume their children with ASDs are lonely, even if the child hasn’t expressed an interest in friends. Therefore, I find myself dealing with two different issues: some people with ASDs desire friendships and some have friendships desired for them.
First, let me remind parents and educators that you cannot force a child, teen, or adult with an ASD to want, desire, or even need friendships. Some autistic people even resist friendships, actively wanting to be left alone by peers or colleagues excluding any necessary interactions. This desire for solitude can be difficult for some people to understand, but it is real and does seem to be more common among autistics. Therefore, any advice I offer on friendships should not be forced upon autistic individuals. You can only offer to help someone who wants friendships, otherwise I advise respecting the wishes of the autistic person for solitude. 
If you are an autistic person and don’t feel compelled to form friendships, that isn’t unusual. You are not “weird” or “defective” — regardless of what some mental health “experts” might want to claim. If you must have an impulse to form friendships to be normal, I’m quite comfortable being abnormal. Do not let people push you into being something you are not. Express yourself, explain your needs and desires, but don’t try to change if that doesn’t feel right to you.
With the preceding caveats, I’ll now try to offer what few insights into friendships I have. I encourage readers to seek out other resources on social skills and relationships, since any text can reflects only one set of opinions. 
Where Friendships Begin
Friendships begin in same settings for individuals with or without any challenges. Most of our friends start as peers or colleagues: people we meet at school, work, or similar locations. However, because autistic individuals must adapt to social impairments, they might need to consider alternative settings for developing friendships. The following are some suggested settings for meeting potential friends:
• Churches, synagogues, mosques, and similar spiritual communities
• Schools and various classroom-like settings dedicated to learning
• Support groups dedicated to life skills and social development
• Special interest groups (“SIGs”) and clubs dedicated to topics or causes of interest
• Progressional organizations dedicated to careers or academic disciplines
• Volunteer groups and civic organizations dedicated to helping others  
• Workplaces are the primary settings in which most adults meet new friends
The more organized and routine a setting or event, the easier it is for autistic individuals to navigate the social norms. The groups listed generally follow schedules and have defined rituals. Because there is a purpose for gathering with others in these groups, that also reduces the stress caused by social situations. For people with ASDs, I suggest avoiding “social only” gatherings as settings to meet new friends. Notice that I’m not including some of the places teens and adults often associate with meeting new people: clubs, dances, concert, coffee shops, bookstores, museums, etc. Some of those might be good for dating (a later chapter), but I have found these are not the best places to make new friends. However, some organized groups and events do meet within these settings at times. 
School and “class-like” settings offer the most routine and predictability for meeting new people. For children with and teens with ASDs, parents tell me that dance classes, martial arts, gymnastics, and swimming programs are good ways to have a classroom atmosphere outside of school. Autistic adults might find classes at craft and hobby stores are an option. There are also “continuing education” and “community classes” at many high schools and colleges. Many community colleges offer a catalog of such courses. 
I’ve found it can be difficult to locate special interest groups and clubs, especially in smaller towns and rural areas. However, if you join a national group the organization usually provides the contact information for local gatherings. There are national groups for everything from astronomy to zymurgy (beer brewing) — a quick Web search locates most of these easily. I’m a member of several national groups with local chapters. I receive local event calendars and e-mail notices, so I could easily meet people with interests similar to mine.
Friendship Foundations
Friendships develop at different speeds based on too many factors to catalog. Some people simply “click” as friends within days. Other friendships take years to evolve as peers and colleagues learn more about each other. Some of the factors that help friendships evolve might include:
• Working on projects together, thereby sharing a purpose and goals
• Dealing with challenges together, bonding through the adversity
• Sharing a passion for a cause or topic outside work or school
• Coming from similar backgrounds, resulting in familiarity with experiences
• Enjoying the same hobbies and interests
One of the constant refrains in business and education is, “Our differences make us better as a group.” While no one can dispute we learn from people different from ourselves, the reality is we tend to prefer to socialize and bond with people more like ourselves. In high school cafeterias and office lunchrooms, people with similar skills and interests tend to gravitate towards each other. While we might learn more mingling with different people, I’ve found most people aren’t that interested in topics that excite me. I’d rather be around people with shared interests. 
All people have areas of passionate interest and those about which they don’t care at all. Students and adults with ASDs often exhibit perseveration on a skill or topic specialty. If other people aren’t interested in the same activity or pursuit, they are unlikely to be comfortable with the seemingly “one-track mind” of an autistic individual. The result is that autistic people do seem to form friendships with equally passionate specialists. Mentors often become lifelong friends, for example.
 Stress, ranging from homework deadlines to major disasters, has a way of bringing people together. The shared experience of “surviving” either metaphorically or literally creates bonds among people in a class, workplace, building, or community. Working together with a sense of urgency forces people to ignore their differences to focus on similarities. Members of sports teams experience this same bonding. I’ve noticed military veterans explain basic training the same way: “surviving” the boot camp creates lifelong bonds. 
Because stress can be debilitating for some people with ASDs, I’m hesitant to suggest seeking out stressful situations. Also, I’m simply not good at sports which only results in more isolation, not friendships. I did participate in school band, which includes competitions and concerts. Those events are shared experiences that can lead to bonding. 

Being a Friend
Many of the autistic teens I have met are desperate for friendships. The desire for friends seems particularly overwhelming for students diagnosed with Asperger’s Syndrome or as PDD-NOS. Earlier in this text, I noted that I theorize these “less impaired” autistics are more aware of the friendships others around them have and want similar connections. I don’t really like the phrase “less impaired” but technically these individuals with ASDs exhibit a greater awareness of social connections and social rituals. Some describe themselves as extra-emotional and “too sensitive” while other autistic people seem to have less instinctive empathy. 
This painful awareness that they do not have the same connections as their peers can lead autistic individuals with try too hard to be friends with other people. When you try to force a friendship to develop, the result is usually the opposite: peers and colleagues start to avoid you. The question I’m asked by students and adults with ASDs who do want friends is how to actively seek friendship without making other people uncomfortable. Here are some suggestions for being a friend:
• Offer assistance you realistically can provide when the friend needs help
• Listen actively to learn as much about a friend as possible, without being “nosy” or pushy
• Show appropriate generosity, without trying to “buy” a friendship
• Limit contact such as phone calls, e-mails, or text messages to once a day (or less)
• Return messages and calls in a reasonable time, but avoid instant responses
• Avoid “shadowing” someone, it makes people uncomfortable
• Appreciate that friends need breaks from each other
If there’s one word I can offer to individuals with ASDs wanting friends, it is “restraint.” This also applies to dating and romantic relationships, which are special friendships. People want to be liked and appreciated, but they don’t want to feel stalked. Too much attention starts to seem obsessive, and that will scare away a potential friend. Also, when you invest so much energy into pleasing someone else you start to forget what makes you special. 
Autistic teens seem to have a tendency to shadow and fawn over potential friends. I’ve suggested allowing yourself one daily “outside” contact when there’s no emergency or pressing purpose for more contact with a friend. That is hard for every teen, but it helps an autistic teen avoid accusations of being obsessed with someone. 
An exception might be if you use a social networking site such as Facebook. Then, if people are responding to your posts and you are responding to theirs, that seems acceptable. My general guideline for autistic teens is that you should never be the “most responsive” person in an online forum. It’s okay if you are sometimes the only person to respond to an online post, but then you should stop with that single response. If someone perceives you as an online stalker you risk more than losing the friendship: online stalking is a crime in some states. I have had to explain to a school that an autistic student wasn’t stalking, but felt compelled to respond to every online update posted by a friend.  
Another impulse some people with ASDs feel is the desire to shower potential friends with gifts. You cannot buy friends, so don’t try. Offering all sorts of gifts for no reason is not being a good friend. Doing someone else’s homework or office project is not being a good friend. Also, telling someone constantly how important they are to you is not going to win friends. You can do too much and give too much for a genuine friendship. 
The real friends in our lives are the people who listen to us and appreciate our psychological needs. If you want to be a friend, you have to practice active listening. You aren’t listening closely when you are constantly doing and giving. Active listening means hearing or reading the words of a friend and carefully analyzing them to understand your friend better. 
The key is listening broadly so you understand the entire person, not little bits of trivia. Memorizing trivia doesn’t help you understand what matters to a person. I cannot tell you my wife’s one favorite meal, her one favorite flower, or her one favorite author. Her specific preferences might change over time. Instead, I can tell you that she likes Tex-Mex and Italian food. I can tell you she loves gardens and most flowers. I can tell you she loves books and owns everything from art histories to science fiction. Broad information about someone is more useful in a friendship than the minutia. 

eBook Status, Busy Week Ahead

The free version of A Spectrum of Relationships is being edited this weekend and should be online no later than mid-week. The free edition will be abridged due to the restrictions of various online bookstores. The free edition will cover interpersonal relationships from strangers to friends; only issues of dating, sexuality, and long-term relationships will be missing from this release. Okay, those are big topics. After reading the free abridged edition you will be able to decide if you want to read more or not.

The full-length first edition will be available after two to three months, at worst. During that time, we will be fine-tuning the eBook design and making any necessary updates based on reader feedback. If you have any questions or suggestions relating to autism and relationships, please let me know. I want the full edition of the text to be as useful as possible.

This week I am making a quick round-trip to the East Coast. I also have a presentation next week and some other duties that will take time from writing. This might mean fewer updates to The Autistic Me.

Friday, March 18, 2011

What Do You Want to Do?

I am speaking to several high school classes in coming weeks on the issue of employment. I've been told my honesty is why the schools are interested in my presentations, though I have admitted that I'm "under-employed" at the moment and uncertain of my own future.

When I speak to students about employment, I tell them there are several types of "vocational discovery" and we often don't know which type we will experience until well into adulthood. Some of us experience more than one type of vocational discovery, too. The types of discovery I mention include:

  • Certainty from youth
  • Accidental inspiration
  • Experimental elimination

I was certain from first or second grade that I would be a writer, at least avocationally, and ideally professionally to some extent. But, I also loved science and technology. By the fifth grade, I was fascinated by business and the stock market. To this day I find myself trying to balance my various interests. The only constant is writing, because I would write about my other interests as I pursued them. Writing defines me, even when I have tried to be something "more practical" professionally.

My personality doesn't lend itself to accidental inspiration, but I've met many people who discovered career paths accidentally. These people found themselves doing something that inspired a complete revision of their charted vocational paths. A friend of mine went from being a teacher to being a nurse when he realized a nurse "teaches" patients about their medical situations. Several friends have turned hobbies into businesses, not through careful planning but by "accident" when their friends started asking to buy services or products.

Most people I know have found careers through the process of elimination. That seems wise, especially since high school and college students might not know their own strengths, weaknesses, and passions. I encourage students to try various careers to eliminate ideas until they discover a great "fit" for themselves. Schools offer job shadowing, internships, and career counseling services to help with this process.

Sometimes, like right now, the job market doesn't allow us to follow our dreams -- we have to pay bills and survive. That's okay, as long as you don't give up your dreams. When I've had to work jobs that were work, not dreams, I kept practicing my other skills and interests. I never stopped reading about science, technology, and business. I keep on writing, even when I'm writing only for myself. Working is good experience, even if you have to put your dreams on hold.

Right now, most of my income comes from writing and editing. I'd like to have a safety net, financially, so I'm still searching for opportunities that will offer that security. Maybe I'll return to teaching, or maybe I'll end up in private industry. I cannot predict where I will be in a year. What I do realize is that everyone has to take his or her own path professionally.

I'll address some "autism- / disability-specific" issues next week. We should never forget that the employment environment is challenging for many people right now, regardless of personal challenges. I encourage students to never give up and to keep their skills and knowledge current. When opportunities do appear again, you need to be the most prepared candidate for any openings.

Disabilities are additional "bumps in the road" on our career paths. That's okay. In many ways, dealing with those challenges can make you a better employee -- you know the value of adapting to your limitations and circumstances.

Wednesday, March 16, 2011

Always Offending Someone

Today I had a pleasant e-mail exchange with another autism blogger. It reminded me of a basic truth about autism: express opinions or facts, you are certain to offend someone. You could state that autism begins with the letter "A" and someone will read into this statement something conspiratorial. "Autism" as a topic is as polarized as the current U.S. political environment. Every issue is an "us vs. them" issue.

Human existence is nuanced. My ethical system is rather rigid, but I also realize that sometimes we weigh "right" and "wrong" on a metaphorical scale. Our opinions on some matters are reflections of our experiences and cultural norms. I'd like to argue science is science, but even science seems to engender endless debates. Scientists will admit funding and publishing are definitely political and socially complex.

Some of the reactions to blog topics are anticipated, while others have surprised me. Allow me to explore some of the topics that result in heated private e-mails and blog comments. Also, I must remind readers that I do remove any comment that is a personal attack or threat, which seems to be a good policy to have.

1) All things "vaccination" lead to heated responses, not all of them public comments.

I was diagnosed mentally retarded at birth. I've written about the birth trauma and still might publish an ebook on my experiences. The experiences are unique to me, but many parents and individuals have told me of autism diagnoses long before vaccination. When you dare to mention being diagnosed before vaccination, expect to be attacked. I've been called a liar, an apologist for Big Pharma, and a paid shill. My mother was there when I was born, and she can vouch for the birth trauma and warnings of retardation. But, that story doesn't fit some templates.

The science of vaccines is difficult to explain. Medicine is never "risk free" and that's difficult for non-scientists to accept, it seems. If you admit that vaccines do pose limited risks to some populations, you're challenged to explain why anyone should take that risk. It's a no-win topic because the sides are so polarized they don't trust each other to be reasonable. Researchers cannot imagine people reject the safety of vaccines, which is expressed in probabilities. The parents of children with real (or perceived) vaccine reactions cannot imagine why anyone would accept any risks.

2) Any discussion of "incidence" is bound to cause conflict.

Informatics is a complex discipline, as is epidemiology. Add to this the subjective nature of "autism" diagnoses and you have all the ingredients for an endless debate. What is or isn't autism keeps evolving. The historical data are only slightly better than useless, because the diagnostic criteria keep changing and awareness of autism keeps increasing. It's an impossible task to compare autism rates today to autism rates a century ago.

Trying to explain that "autism" is probably several "autisms" with multiple etiologies adds to the confusion. The "autism" of a severely impaired child with a low I.Q. is likely not the same "autism" as that of a high-functioning individual with a career. I'm not even certain these "autisms" are connected, but right now we count them all as autism statistically. No matter what I write about autism rates, someone will be offended that I am either overstating or understating the problem. I also object to the use of "epidemic" because an epidemic is something contagious. That's a fine point that always leads to hate e-mails telling me how wrong I am.

3) Any critique of small studies leads to angry e-mails and comments.

Published autism research, especially on various treatments and therapies, is often in the form of small "case studies" involving one, two, or three subjects. Any "study" involving three or fewer people is not generalizable. It is valuable as a pilot project, but nothing more. Yet, we see press release after press release about studies of autism therapies. When I complain that studies of Social Stories, video modeling, and other techniques lack large enough populations and consistent replication, I generally receive four or five angry e-mails accusing me of not wanting children to receive "scientifically supported" therapies. Sorry, but three children do not constitute a conclusive study.

Someone asked what makes me qualified to state such a thing. A research doctorate and courses with titles such as Research Methods, Quantitative Statistics, and Research and Evaluation. There are quantifiable numbers needed to ensure a study is generalizable. Without getting into the math, there really is a reason you only need to survey "1000 U.S. Voters" to estimate election results. There's a minimum population you need and a maximum population beyond which results are not improved statistically. For autism in the U.S., a professor and I calculated the minimum population for one particular study of autistic students to be 48 participants, with an ideal population of 60, and a "threshold" population of slightly more than 100 participants. Three? Not generalizable at all. Nothing better than anecdotal evidence, one might argue.

Case studies are common in education and psychology. Small studies are important and even essential to the development of larger studies. Case studies are common in the social sciences, as are "ethnographic" studies. These are not the same as quantitative research in the "hard sciences." These studies are meant to inform theories and shape future research, but they often include numerous caveats by the researcher that the studies are not meant to be generalized. Of course, press releases and news stories don't explain the nature and purpose of small-scale case studies.

4) Any critique of ABA-based therapies is taken as an attack on all therapies and practitioners.

Only a small, small number of therapists practice to the original methods of Ivar Lovaas and his colleagues. This is a fraction of the therapists and specialists serving individuals with autism, but the moment you criticize the fringe groups people presume you are against any and all ABA-based therapies and educational strategies. I've pointed to NARTH, in particular, as a group that invokes the Lovaas name and methods to "cure" homosexuality and "feminine traits" in boys. No one should take these therapists seriously, but I am also reminded that homosexuality was considered a disease well into the 1980s by a significant minority of psychiatrists.

I support research to identify the best therapies for any and all challenges individuals face. What I don't support are therapies or applications of therapies that have been discredited. Curing "feminine" boys? Seriously? I think being against that therapy is pretty timid. I am also against any use of aversion-based therapies for individuals who lack the ability to refuse such approaches. Negative reinforcement doesn't seem "right" to me.

5) Any personal story is criticized as either making autism look bad or glorifying autism.

Whenever I write about personal experiences, I'm certain to get a few notes either attacking me for "glorifying" autism or for depicting autism negatively. Guess what? Autism is a negative, most of the time, as are my other disabilities. I don't find being partially paralyzed improves my life. Who wants to use a cane to walk on bad days? Migraines aren't wonderful gifts, either. So, no, I don't "celebrate" autism. It is one of many challenges with which I live. Other people live with more significant challenges, though, so I don't consider it too useful to surrender.

Do I like some of my skills that might be attributed to autism? I've written before that I don't mind being decent with computers, logical problems, or languages. I don't mind the "gifts" -- but I can still dislike the impairments, too.

When I write about falling down, often literally, and dusting myself off before moving forward, I can predict that I'll receive an e-mail or blog comment that I have glorified autism or made it seem like a great thing. The other complaint is that I make it seem like anyone can accomplish something in life, ignoring how horrible life is for some disabled people. I've met people in some pretty horrible situations, and yet they've managed to do much more than I have. They don't make me feel bad about myself -- they remind me to keep trying.

Yes, some severely challenged children will be fortunate to make small progress in life. That doesn't mean we shouldn't celebrate those small victories. I've celebrated a teenager mastering shoelaces. That's not condescending -- it was a truly great accomplishment for that person. Why can't we each have our own goals and targets? My goals are not impressive to some people, but they would be spectacular for me. I try to have reasonable goals based on the challenges I face; I am not planning to run marathons or scale mountains.

6) My status as a "neurodiversity" advocate (or not) leads to complaints.

At least once a week, someone writes to me about my role as an "ND" leader. I'm not a leader of anyone, much less any group. Of course, when I write that I'm not interested in most ND activism and/or the self-advocacy movement, then I'm accused of not caring about civil rights. I am not a member of various self-advocacy groups, I'm not active on their mailing lists or forums, and I'm not interested in their social gatherings or conferences. I admire some people with passion, but too many get consumed by that passion.

My ambivalence towards ND pleases no one. That's okay with me, since I can't get that passionate about neurodiversity. I'm glad there are voices speaking for that segment of the community. On some issues, I agree with them, on others I do not agree. Admittedly, I'm not joining any marches, protests, or even e-mail petitions. I am outspoken when it comes to civil rights, but I'm not a believer in the power of anger -- anger upsets me and leaves me unable to function. I believe in political and legislative action, carefully considered and debated to prevent knee-jerk reactions that actually make matters worse.

I've had autistic activists call me a "traitor" but that's a bit silly. I'm not against teaching people about autism or advocating for better access to public spaces and services. I'm all for increased awareness and tolerance. I'm simply not vehemently opposed to some groups they dislike. I'm not going to accuse a parent supporting Autism Speaks of wanting to commit genocide. I'm not going to boycott my favorite stores, either, just because they donate to the "wrong" charities. The better response would be to establish a research grant and education program, then seek to compete for donations and corporate funding.

Again, I see no contradiction in admiring the self-advocates while not supporting the rhetoric and actions of some self-advocates. Why must I take an all-or-nothing position? What's wrong with stating that I am not comfortable with neurodiversity as a "movement" while also stating that I believe autistic people deserve more respect and access to services?

Only an Inkling

The preceding topics offer only an inkling of those that seem to provoke angry e-mails and comments. As I wrote at the start of this essay, every post seems to result in at least one angry reader being compelled to respond. I can't even write a "light" post without someone getting upset. I suppose that I should be impressed anyone takes what I write that seriously.

Tuesday, March 15, 2011

Kindle Subscriptions to The Autistic Me

I am pleased to announce that if you own an Amazon Kindle or use any Kindle software reader (Mac, Windows, iPad, etc.) you can now subscribe to The Autistic Me and receive the blog in an ad-free format. The Kindle supports "text-to-speech" and several other accessibility options, which is important to me and many of my readers.

To subscribe:
http://www.amazon.com/gp/product/B004S7EZGQ

Setting up the blog as a "subscription" was the first step towards preparing a series of eBooks for release via Amazon.

Thank you everyone for supporting this blog and my other projects.

Autism and the Workplace

The following is another except from the book I'm writing, A Spectrum of Relationships. As I have announced before, there will be a free public draft before the final edition is assigned ISBNs and uploaded to the major online bookstores. Only the abridged draft will be free, but it should help people determine if they want to purchase the final revision of the book.

As always, this section is only an excerpt but all comments and suggestions are welcomed.


Avoid Being Annoying
The key to being respected as a peer and colleague is to avoid being perceived as annoying. Whether you can do the work assigned is less important in terms of relationships than your attitude about the work. Since most of our relationships start at school or work, maintaining the respect of peers and colleagues is important.
Some autistic individuals do not judge their peers and colleagues, but many of us do. My discussions with autistic students and workers indicate most of us judge peers and colleagues on their skills and knowledge, while we are being judged on personality traits and social skills. Our peers and colleagues ask themselves the following questions, among others, when forming judgments:
• Are you an optimist or a pessimist? 
• Do you handle stress well or poorly?
• Do you help or hinder others and their projects?
• Do you share credit or take credit for accomplishments?
• Do you defer to superiors or challenge them?
• Are you a leader or a follower?
The preceding questions are only some of the criteria peers and coworkers use to decide how close they want their relationships with us to be. If someone is judged to be a “bad” coworker, then that person is also unlikely to considered a potential friend. For people with ASDs, the answers to these questions is not always clear. We are often poor judges of how we are perceived, if we remember to consider perceptions of us at all. 
Most people naturally gravitate towards optimists. They want to work with peers and colleagues likely to help everyone succeed in the eyes of a teacher or supervisor. Confusing for me, and others with ASDs, is that peers and colleagues don’t seek someone who blindly follows instructions and respects all authority figures. We are judged on a “sliding scale,” therefore. We have to balance being independent with working as a team, for example. We have to balance respecting the boss or teacher with carefully offering different opinions. Our peers and colleagues respect someone who can offer new ideas to superiors, without causing conflict. 
What I can state, definitively, is that no peer or colleague wants to be friends with a negative, anxious, disorganized person prone to conflicts. If you want friends, you have to master when to keep negative thoughts to yourself. And yes, I know keeping silent is a problem for autistic individuals.
Appearing Optimistic
Appearing optimistic is not the same as being inherently optimistic. Most of the autistics I’ve met are simply realistic, but that realism can be perceived as “pessimism” by peers and colleagues. People have called me negative when I thought I was only expressing an honest analysis of a situation. How to appear optimistic has been something I have had to learn from mentors. Some of the suggestions I have learned include:
• When discussing a project, discuss it in terms of “odds of success,” not failure
• If you notice a potential problem, try to offer a solution when alerting a superior
• When you must address a concern, use e-mail or a private meeting when possible
• If you need to raise a concern in a classroom or meeting, raise it once and move ahead
One reason I seem “negative” to people is that I focus on what must be done. Things that are working do not need to be fixed or changed. I’m more likely to raise issues and concerns because I don’t understand why anyone needs to dwell on success. Teachers and employers have told me to “celebrate” successes, but I am always looking forward. That’s a good trait for a self-employed person, or someone working alone on a project, but other people do seek positive reinforcement.
When I was an undergraduate, one of my mentors said the trick to managing people is to mention two or three good things for every issue that had to be addressed. That’s not easy for me and can feel like lying, even though it isn’t lying. It is manipulative, I believe, but I also recognize that classmates and coworkers don’t like to hear lists of problems. 
People mistake realism for pessimism and pessimism for a “bad attitude” at school or in the workplace. You do not want to be known as the classmate or coworker with a bad attitude. I’m not always clear on what this means, other than the implication you don’t like your job. However, I have been told that a “bad attitude” includes being perceived as if you have “given up” on projects. Pessimists give up, since they are certain of future failure.  
Showing No Stress
People don’t like stress, which often includes pessimism. Unfortunately, stress seems both contagious and natural in school or the workplace. The pressures range from assignment deadlines to the physical spaces. Autistic individuals might feel anxiety or stress by default in these settings. Since people do not want to be around stress, people with ASDs face the challenge of trying to minimize stress when dealing with peers and colleagues. 
For people to consider you approachable, you need to know how to “de-stress” at school or work. Disability and employment specialists have offered me a number of suggestions for autistic students and employees. Some of the suggestions to at least appear “less stressed” include:
• Read information on stress management and find what works for you
• Identify a quiet place you can use to take a break from interactions
• Post and maintain a public calendar and project “to-do” list
• Learn to say “no” politely when you cannot possibly take on more tasks
There is no one best way to reduce stress at school and work. I used to try to sit somewhere dimly lit and meditate, but that doesn’t work for everyone. People with autism sometimes tell me a “quiet space” only highlights the background sounds, so white noise or nature sounds might help. It is important to lower stress, though, if you want people to feel comfortable around you.
Peers and colleagues do not know how much you might be trying to accomplish, so the one tip I do have is to make sure people respect how busy you are. For autistic individuals, I’ve found a calendar posted somewhere helps because then peers and colleagues can see you are busy. Also, it is not a crime to tell peers and coworkers you are unable to take on more work. Even teachers and supervisors might have to be told you are overwhelmed with too many tasks. 
Another challenge for people with ASDs: when someone tries to get you to defend something, it seldom helps to respond. Being defensive seems to cause an upward spiral in conflict and stress. Many people with autism have an impulse to be accurate, so anyone questioning their factual statements can trigger a defensive response. 
Sometimes, people just criticize what they don’t understand. You can explain yourself once, but if you have to repeatedly defend an action or your views, the stress will be contagious. Plus, if you are defending yourself constantly you start to question yourself, which goes back to the need to appear optimistic and not pessimistic. This reinforces the suggestion that walking away from a conflict is often the best approach. 
Being Helpful
Throughout this text I emphasize the value of helping others by sharing information. An earlier section explores how to appear helpful, so refer to that for specific tips. People get annoyed with a classmate or coworker they believe is hindering success. You have to balance being helpful with accepting too many tasks, which is complicated. I encourage everyone, including students and workers without ASDs, to try to help others whenever it doesn’t negatively affect other projects.
Sharing the Credit
Sometimes people with ASDs forget that social rituals are important to other people. One of the rituals of school and work is the recognition of others when a project is successfully completed. If you are a team leader on a project, sending positive notes to coworkers or classmates is one useful approach. Also, if a supervisor or teacher congratulates you on a job well done, be sure to mention to your superior that other people helped you. This also reduces the risk of being perceived as “snobby” or “conceited” by coworkers. 
It’s not only a matter of sharing credit, but of recognizing anyone who performs well. I had a student with autism tell me, “But everyone just did his or her job. What’s the big deal?” I understand the complaint. I’ve wondered about “tipping” someone providing good service: isn’t good service to be expected? Apparently not. I advise people to say “thank you” to classmates and coworkers on a regular basis, even when they’ve only done their proper jobs. 
Respecting Authority
Demonstrating respect for authority is important in school and the workplace, as long as the authority is perceived as reasonable by others. Calling people by their formal titles is one way to demonstrate respect. Also, individuals with ASDs should learn any rituals that are expected in their school or workplace settings. I suggest observing peers and colleagues to master the norms of the settings. The goal is to be perceived as at least as respectful as other classmates and coworkers.
Respecting authority doesn’t mean never questioning or challenging authority. However, as written earlier in this text, you should raise questions in private and always politely. Constantly challenging authority leaves one perceived as a “troublemaker” and risky for others to befriend. 
Peers and Colleagues Can Become Friends
Our parents, caregivers, and educators care about peer and colleague relationships because most friendships formed throughout life start within these social circles. Parents arrange “play dates” and sign up children for activities in the hope that a few peer relationships will develop into friendships. The first peer-to-friendship transitions happen between the ages of four and five for most children. 
Children with ASDs apparently form these bonds slower, needing more time to navigate the social settings and focus on those peers likely to be reciprocally friendly. As adults, it still might take the autistic adult longer than his or her colleagues to recognize potential friendships. The difficulties nurturing relationships from the peer and colleague level into friendships are likely part of the lifelong challenges of ASDs. 
The next chapter addresses how friendships are formed and maintained. If an autistic can maintain peer relationships, it is likely he or she will develop at least some friendships. Many autistics report that it was a peer or colleague who identified when a relationship had become a friendship. Knowing how to evaluate a relationship to verify it is a genuine friendship is one topic I explore in coming pages. 

Monday, March 14, 2011

Real and Virtual Organizing of Books

Today my wife and I spent a bit too much on books, one weakness we share.

The local Borders Books is closing (actually four are closing in our area) and it isn't a popular store. In an urban area, it's not unusual to have a "bad" neighborhood mere blocks from a "good" one. The bookstore is hidden in a dying strip center, behind a gym and across from a Walmart. This is not the neighborhood for a large bookstore. The Walmart is always busy, but I was often one of four or five patrons in the bookstore. Even the well-known used bookstore, which is on one of the busiest corners in the metro area, is seldom busy.

After comparing prices to other sources, illustrating another issue for Borders, we bought several books that were (finally) cheaper at the store. Previously, Borders only received our book-buying business when the chain graced us with discount coupons, otherwise we tend to favor used bookstores, online retailers, and Barnes & Noble (one local B&N has a nice used section).

The problem with buying books: my wife and I both then feel compelled to enter the new titles into our databases. Yes, we have catalogued our books. There is some overlap, but not enough that we shouldn't maintain our individual databases. Then, we have to organize our shelves carefully to make sure each section is accurately sorted. Our house truly is like a personal library.

I've been told this is a very odd ritual. I don't understand how people deal with their books without a good system. Since my earliest computer, I've maintained lists and databases of my books. As a young child in elementary school, I created a card catalog for my books. Order is that important to me. Thankfully, order is important to my wife, too.

Now that the organizing is semi-complete, I am setting aside the database and shelving duties to finish some writing. I always want to organize even more so than I have to date. Even my writing projects reside in a customized database, a spreadsheet, and an outlined "to-do" list. I track everything to keep myself on task. I lose focus if I'm not organized.

I have been told, and I have read repeatedly, that order and routine are common desires of people with ASDs. That does seem to be the case. I have found that like the stereotype of being focused on a subject or two for periods of time, the stereotype of order applies to me. The fact I liked the absolute-least trafficked bookstore in the area reveals something, too. I like to get out of the house, I don't want to deal with people.

Tomorrow, I'll be posting another chapter section from A Spectrum of Relationships. I'll also be working on my other websites this week. Remember to let people know about this blog and the upcoming eBook. I'm working on several books related to autism, all of which will be announced on this blog.

Sunday, March 13, 2011

Autism As Criminal Defense

Using "autism" as a legal defense for criminal behavior bothers me. I think that's just an attempt to avoid responsibility for crimes, especially in cases in which a brilliant defendant uses Asperger's Syndrome as a defense for murder. I don't like that at all.

A story in the Washington Post has raised several questions about autism and violence on several online forums.
In Va. assault case, anxious parents recognize 'dark side of autism'

By Theresa Vargas
Washington Post Staff Writer
Sunday, March 13, 2011; 12:30 AM
When a Stafford County jury this month found an autistic teenager guilty of assaulting a law enforcement officer and recommended that he spend 10.5 years in prison, a woman in the second row sobbed.

It wasn't the defendant's mother. She wouldn't cry until she reached her car. It was Teresa Champion.

Champion had sat through the trial for days and couldn't help drawing parallels between the defendant, Reginald "Neli" Latson, 19, and her son James, a 17-year-old with autism.
...
Champion said parents are just beginning to acknowledge what she calls the "dark side of autism," their children's capacity for aggression when they are frustrated, angry or overstimulated. Her son recently hit his attendant and attacked his father in front of a movie theater. Other parents describe scary episodes of biting, kicking and hitting.

It's not easy to talk about children lashing out, Champion said. But it's necessary because many are getting older and bigger and yearn for more independence, which leads to private struggles becoming public.
Is there research to support a connection between autism and violence? Maybe. Or maybe not.
  • Asperger's disorder and murder. J Am Acad Psychiatry Law. 2005;33(3):390-3.
  • Autistic psychopathy or pervasive developmental disorder: how has Asperger's syndrome changed in the past sixty years? Nippon Rinsho. 2007 Mar;65(3):409-18. 
  • Criminal responsibility in Asperger's syndrome. Isr J Psychiatry Relat Sci. 2006;43(3):166-73. 
  • Violent crime in Asperger syndrome: the role of psychiatric comorbidity. J Autism Dev Disord. 2008 Nov;38(10):1848-52. Epub 2008 May 1.
One reason Asperger's Syndrome was classified as "autistic psychopathy" was the tendency to diagnose AS at an unusually high rate among young men charged with violent crimes. In recent years, AS diagnoses played a role in several murder cases -- from Hans Reiser to "Craigslist Killer" Michael Anderson. I count at least two dozen instances in the news database of using AS/autism as a defense in murder cases.
Michael John Anderson's Asperger's Syndrome was responsible for his decision to shoot Katherine Ann Olson in October 2007. A jury should know that mild autism is responsible for a murder suspect's apparent lack of remorse for killing a woman who responded to his online ad for a babysitter, his lawyer argued Thursday in Scott County court.
I've met with or been contacted by at least six autistic students accused of violence or threats of violence. I cannot comment on those individuals'' stories, but each told me that the health care professionals involved did cite AS as a contributing factor to either an actual action or the perception of potential violence. Being perceived as a threat is not the same as being a threat.

I really hate these stories, reflexively. I don't believe individuals with ASDs are any more or less violent than the general public. In fact, there are studies suggesting students with ASDs actually get into less trouble during their lives, as they prefer to follow rules rigidly. I'm not sure that's true, either. People are people, so I assume "good" and "evil" exist in every community.

Friday, March 11, 2011

Writing (and Wanting) to Feel Productive

My wife, amazing person that she is, has been trying to figure out how I might relax and resume writing. I was supposed to write four or more screenplays this year, and I vow that I will. I don't believe I'll be able to write more than four, but I know I can compose four.

The problem is that my mind took a hiatus for the last month. Instead of maintaining my normal writing pace, I ended up focused instead on two recent job interviews.

I had some bit of hope, a little tiny sliver of hope, approximately a 10 to 15 percent hope, that I might land a full-time job. That is probably reduced to a 5% hope by now, if that, and I keep trying to remind myself that logically the career path was out of my hands. I worked hard to earn interviews, but the economy simply is what it is. By not giving up, I did what I could.

I was a finalist for three or four jobs this year, but in the end nothing materialized. The stress of the last two months affected my writing, which was supposed to be my primary vocation after this summer. For whatever reason, I kept applying for jobs after swearing the job hunt was over. To my surprise, at least I was called for the handful of interviews.

My father tells me that sometimes coming in second hurts worse than not making the playoffs. I'm not a sports nut, but I believe I understand the concept. You get optimistic when you make the interview cut. You start to make plans and imagine what the job might be like. Then, if you don't get the job it is more disappointing because it was so close.

It is frustrating. There's a little remorse, but mainly frustration. The doctorate was expensive, it turns out, and I do need to pay the student loans which are now due. The deferments ended with 2010, so there's a rather substantial item added to our monthly expenses.

Anyway, I am going to try to refocus myself and get the writing projects back on schedule. I do hope to be posting more regularly to this blog (along with my others) and I will try to update our websites as well.

My plan is to have A Spectrum of Relationships, which was originally planned for late February, online by the end of this month. That leaves me 20 days to get my act together. The first edition will be free and posted only to our website. We will then ask for suggestions and comments so the "real" edition can be finalized and posted to various online bookstores.

In April, I will be working on a screenplay for the entire month. Expect fewer blog posts as April is "movie month" and I will also be working to submit my exiting screenplays to production companies. For those interested, April is "Script Frenzy" month, from the sponsors of National Novel Writing Month.

By writing, which is what I do, I hope to forget the frustration and something of a sense of "failure" that has resulted from the graduate education experience. My wife deserves so much more than what I have provided (which is close to nothing, and financially less than nothing).

Honestly, I need to sell some of my writing this year to avoid "going backwards" financially. That should prove to be a strong motivator to get my fingers typing faster and to dictate when the fingers won't cooperate. I'm sure there will be days when my voice, fingers, and brain all take time off for whatever reason. Still, I have to push ahead.

My plans do include some stories for young adults, which will be published as eBooks on various platforms by year's end. When I do complete those, I'll be sure to announce that in many places so people can spend $1.99 (I'm guessing at the price) and read my attempts at fiction. Honestly, I'm hoping some readers of this blog will at least try the fiction when that time arrives. The stories are for pre-teens and early teens, I would guess.

Tonight, I needed to vent. I just feel down and don't like that. Time to stop moping and start doing again.

Wednesday, March 9, 2011

Organizations with Misleading Names

Earlier today I was rendered befuddled when someone cited the "federal standards" of the National Autism Center, implying the organization is somehow a government organization. Moments later, I heard a radio commercial for the National Debt Relief Institute. This was followed an hour or so later by a message from the Back Pain Institute. My mind was reeling.

I cannot believe it is an accident or in any manner unintentional that both for-profit and non-profit organizations with various agendas adopt names that imply a connection to the federal government or to respected research universities.

In the autism community, the rhetorical move of including "National" or "Institute" in organization names is widespread. The following is only one example and is not meant to focus on one particular group. The organization might be wonderful -- but the naming is problematic.

National Autism Center. Since today wasn't the first time someone cited this organization to me, at least one confusing it for one of the National Institutes of Health, the name of the organization deserves some analysis. I understand why a parent might believe NAC maintained some sort of "federal standards" for autism therapies. NAC is a private non-profit organization that is a division of the May Institute, which does have "affiliations and consultations" with various universities and governments. NAC's name isn't the only problem.

NAC has published "National Standards Project" for autism treatments and therapies. The title makes the publication sound like a federally published report. It is not. It is a report that, by mere coincidence, supports the May Institute's practices and theories of autism therapy. The NAC website states:
The National Standards Report will serve as a single, authoritative source of guidance for parents, caregivers, educators, and service providers as they make informed treatment decisions. We are confident that these findings and recommendations will change lives and give hope and direction to people whose lives are touched by autism.
That certainly implies a level of authority in line with a "national" project. Parents can be excused for thinking this is a federal standard.

Parents, educators, care givers, and others need to be defensive consumers of information. If you read or hear about a group that sounds like a federal program or a university research institute, there are some steps you should take to confirm this:

1) Websites of government organizations are registered to the ".gov" generic top-level domain. Top-level domains like ".gov" are reserved, meaning not just anyone can register a website with that domain extension. Some websites try to fake government affiliation by embedding ".gov" in their full website address. For example, "http://www.gov.readinginstitute.com" is not a government site. The ".com" indicates the site is commercial.

2) University websites end in ".edu" and are supposed to be clearly identified. Departmental sites, including those of "institutes" within a university, should have the university clearly identified on the page. For example, the University of Minnesota Landscape Arboretum website "http://www.arboretum.umn.edu" ends in "umn.edu" which is the official domain of the university. To test this, you can search for "umn.edu" and find the University of Minnesota's website.

3) The word "affiliated" is a favorite of groups wanting to imply authority on an issue. Claiming you are "affiliated" with a university is technically meaningless. I can claim I have been "affiliated" with various institutions, meaning I worked or studied at those colleges or universities. Having a page of "affiliations" does not mean anything legally, it merely claims a relationship of some unknown variety.

4) If an organization implies it is a public institution, call and ask. Seriously, you have the right to ask an organization what their federal, state, or university connections are (or are not). If they claim to be "affiliated" you know there's a problem. Bluntly ask, to which state or federal agency does your group report? Which university department oversees your research? To whom should I write at the university to verify this? As a taxpayer, you own part of any public institution.

The parent I corrected was rather upset to learn NAC wasn't a federal project. But, I reminded this person, the National Baseball League isn't a federal institution. Names are, for better or worse, simply names. The National Autism Center might be great. You can't assume they aren't, though you can ask questions. Why did the May Institute choose the name they did and why did they form a second organization?

Again, while I'm using one organization and its name as an example, that organization might be wonderful. I'm merely trying to stress that it is easy to confuse private groups for public institutions. There is a difference, and that's important.

Maybe I should fund the National Institute for Chocolate Studies. We will publish the National Standards for Cookies.

Monday, March 7, 2011

No autism epidemic, Norwegian study suggests

No autism epidemic, Norwegian study suggests
Researchers involved in the "Barn i Bergen" project got widely varying results when they used different methods to investigate the same group of children. The first sub-study concluded that 0.44 per cent of the children had ASD, whereas the result a few years later was 0.87 per cent.
"The clinical test revealed several additional cases of the disorder. This suggests that a diagnosis of ASD cannot be ruled out merely on the basis of interviews with the parents," Ms Posserud explains.
According to Ms Posserud, it is the children with normal intelligence who most often go unnoticed. These children were not included in the definition of autism a few decades ago when the diagnosis was only applied in the most serious cases. Today ASD covers difficulties with social interaction across a range of intellectual abilities. Since the definition has been expanded, many more people have been diagnosed with autism.
Diagnostic criteria matter when measuring the autism rate in any population. When we use "liberal" (broad) criteria, we find far more individuals are "autistic" than when we apply strict, researcher developed criteria. In simple terms: we keep relaxing the criteria, we naturally end up with an "epidemic" of new autism cases.

This doesn't mean one set of criteria is better or worse than any other. What we must admit is that "autism" is a subjective diagnosis based only on the observed traits of an individual. Without a medical test for autism, the statistical measures of "incidence" will fluctuate. It is reasonable to assume the DSM-V will increase the number of diagnoses, and therefore a sudden incidence increase will have to be explained to the public.

Autism: Peers and Colleagues

I have reworked the introduction to the section in A Spectrum of Relationships dealing with peers and colleagues. I hope this introduction is better. I'm not going to repost the entire chapter at this time, only the introduction.

Colleagues and Peers
For some people with autism spectrum disorders, colleagues and peers are the closest non-familial relationships in their lives. Autistic individuals with occupational or academic success often find their success because of an ability to hyper-focus on a topic or skill of special interest. This focus is one aspect of “autistic perseveration,” a near-obsessive interest in an object, concept, topic, or activity.
The reason I chose to discuss peers and colleagues in the same section is simple: workplaces aren’t that different from school — especially high school. Schools and businesses are social settings and our peers and colleagues cannot help but form opinions of us. Because they come into constant contact with us, our peers and colleagues base their judgements on observation, not one or two impressions. Perceptions of you affect your ability to form closer relationships, including friendships, with peers and colleagues.
I’ve read various definitions of “colleague” and “peer,” so it might be useful to clarify the terms as I am using them in this text. I use “colleague” as a broad synonym for coworker. When I use “peer” I am referring to someone of similar age and background as the subject. As a university instructor, all the employees of the university were my colleagues and deserving of respect. However, my “peers” at the university were the doctoral students and the junior members of the faculty within my academic department. Peers are a smaller group, generally, than our colleagues.
Some autistic individuals do not judge their peers and colleagues, but many of us do. My discussions with autistic students and workers indicates most of us judge peers and colleagues on their skills and knowledge, while we are being judged on personality traits and social skills. Our peers and colleagues ask themselves the following questions, among others, when forming judgments:
• Are you an optimist or a pessimist?
• Do you handle stress well or poorly?
• Do you help or hinder others and their projects?
• Do you share credit or take credit for accomplishments?
• Do you defer to superiors or challenge them?
• Are you a leader or a follower?
The preceding questions are only some of the criteria peers and coworkers use to decide how close they want their relationships with us to be. For people with ASDs, the answers to these questions is not always clear. We are often poor judges of how we are perceived, if we remember to consider perceptions of us at all.
Most people naturally gravitate towards optimists. They want to work with peers and colleagues likely to help everyone succeed in the eyes of a teacher or supervisor. Confusing for me, and others with ASDs, is that peers and colleagues don’t seek someone who blindly follows instructions and respects all authority figures. We are judged on a “sliding scale,” therefore. We have to balance being independent with working as a team, for example. We have to balance respecting the boss or teacher with carefully offering different opinions. Our peers and colleagues respect someone who can offer new ideas to superiors, without causing conflict.
What I can state, definitively, is that no peer or colleague wants to be friends with a negative, anxious, disorganized person prone to conflicts. If you want friends, you have to master when to keep negative thoughts to yourself. And yes, I know keeping silent is a problem for autistic individuals.
Colleagues and peers are closer to us naturally: they share at least some traits and interests with us either as students or coworkers. From our earliest schooling in kindergarten, if not earlier, we are among people close to our ages with whom we share daily experiences. Common experiences continue well into adulthood, at which point we work on projects with coworkers instead of sharing homework assignments.