Tuesday, February 1, 2011

Book Excerpt: Intro Autism and Relationships (Draft)

The following is a draft from the eBook I'm preparing, tentatively titled A Spectrum of Relationships. The final book will be freely available by the end of February. Throughout this month, I'll try to share some sections and ideas while they are under development. The following is a section from the introduction.

Autism and Relationships
Individuals diagnosed with autism spectrum disorders live, study, and work in the same social world as everyone else. We are affected by the people around us and, in turn, we affect those with whom we interact. Some of us with ASDs interact more directly than others with autism. Some autistic individuals suffer “severe” social challenges, while others are minimally affected. What can be stated about all people: 
• We live within a spectrum of relationships
• Each type of relationship meets different needs and desires
• Tolerances and social skills affect the relationships we should have
• All relationships evolve and change, like we do
Portrayals of people with ASDs range from the anti-social hermit to the oblivious stalker. The reality is more complex. Some people are social, some are not. We cannot assume that someone with autism does or does not want a network of friends. I happen to be most comfortable with a small network of friends — and most comfortable with my wife, relaxing at home. 
We cannot assume to know how much someone does or does not desire close emotional and physical relationships. However, we do need to address some issues autistic individuals and their parents report are common. Questions from parents and autistic individuals helped guide the composition of this book. 
The spectrum of relationships ranges from the people we will never meet to our lovers. Yes, people we will never meet do affect our lives. Many of us bond with actors, athletes, authors, musicians, and historical figures with whom we identify. As I explain in later chapters, some people with ASDs need help understanding emotional proximity, confusing acquaintances for friends and friends for potential lovers. 
The best way to know what a person with autism wants from relationships is to ask and observe. Most of us give clues to what we want and need through our actions, but direct communication is always best when dealing with those of us with ASDs. Like many autistic people, I prefer a blunt question to long guessing games and hints. If you are the parent or caregiver to someone with an ASD, frank discussions are the surest way to gain insights. 
If you are a parent and imagine your son or daughter feels like you do about people and relationships, you probably are wrong. Regardless if your teen or adult has autism or not, what he or she feels is unique. You can make some educated guesses, but beyond that you need to ask questions to understand a person. 
For those of us diagnosed with ASDs, we have to be self-advocates in our daily relationships. Most relationships are initiated and maintained by subtle signals, non-verbal cues we often miss or misinterpret. The verbal “dancing” within relationships also presents challenges for us. From coworkers hinting that the boss isn’t pleased to a date claiming where you eat doesn’t matter, many of the verbal exchanges in relationships are vague and puzzling.
Autism and Social Impairments
Health professionals use the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders to diagnose mental health conditions. In theory the DSM helps standardize diagnoses and treatment. The current edition is the DSM-IV Revised, published in 2000. Though the DSM provides a checklist of traits for autism, many clinicians rely on diagnostic criteria developed by autism experts. 
When we consider the official criteria for autism diagnoses, the emphasis on social impairments is inescapable. I believe this reveals more about our culture than it does autism: our culture values social interactions and even “charm” more than it does other personality traits. While the emphasis on social skills in our society troubles me, it is a fact of life. 
Whether a clinician relies solely on the DSM or consults other ASD diagnostic instruments, the emphasis on social impairments dominates the evaluation process. The prominence of social impairments in diagnostic criteria means that most of us with ASDs do have social struggles in common. We might not share “stereotypical movements” or “verbal impairments” but we inevitably share social a history of frustrating social experiences.   
Allow me a few points on ASDs and social impairments:
• Diagnostic criteria for Autism Spectrum Disorders include “social impairments”
• DSM-IV and most clinical AS/HFA criteria stress social impairments
• Criteria changing in 2012-13 DSM-V
• Some with ASDs seek relationships, others do not require or want close connections
• There is no “autistic” social norm, though media suggest there is
• Stereotype is isolated, disinterested “geek” with Asperger’s Syndrome 
• All people have differing social skills and styles
Though most individuals with autism are affected by social impairments, we are not a homogenous community. Some of us are highly social and the “social impairment” putting us at risk is trusting people to be honest and literal. Others of us have limited verbal skills, making it difficult to communicate our needs and desires. There simply is no single “autistic” set of social skills or impairments. We are as different as any other community.
There are two stereotypes of autism in the media: the child with classic non-verbal autism and the “geek” with Asperger’s Syndrome. These examples exist, but they are not representative of all autistic individuals. ASDs are, by definition, a spectrum of traits and experiences. 
Spectrum Differences
One of the more contentious debates within autism self-advocacy groups is the distinctions separating high-functioning autism (HFA), Asperger’s Syndrome (AS), and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). There is some research indicating there are differences, but with the DSM-V any official distinctions will vanish. It is important to explain some of the differences clinicians have found in their work with autistic individuals, even if there will soon be one diagnostic category. 
• AS and PDD-NOS are more likely than HFA or classic autism to seek out relationships
• AS and PDD-NOS are more likely to be diagnosed with depression and self-image issues
Talking to clinicians, parents, and autistic individuals, my opinion is that self-awareness and social impulses affect those diagnosed with AS and PDD-NOS more than HFA or classic autism. My opinion is based on the manners in which students and adults with ASDs have expressed their social impairments to me. 
Students and adults at Asperger’s Syndrome support groups often tell me they want, even feel a need, for social connections and romantic relationships. I’m often surprised by how forward people at these meetings are. They join support groups to be social, and social skills are often the primary focus of these groups. 
I want parents and autistic individuals to appreciate how different those of us with ASDs are. For the person seeking relationships with others, the lack of social success can be disheartening. Perceived social rejection can reinforce low self-esteem and contribute to depression. The students I’ve had the opportunity to meet tell me they know they are outsiders, especially among same-age peers. These students suffer genuine anguish as a result of not understanding social interactions, especially relationships.
By comparison, I have no desire to join any group. I don’t have an overwhelming interest in social connections. My impulse to “live and let live” shapes my self-advocacy versus that of the more outspoken autistic community leaders. I engage in social gatherings when asked, but these individuals often feel compelled to engage in advocacy. 
Ironically, my low-key approach is often more effective — unintentionally — because I don’t walk up to strangers and start telling them my opinions. I’m passive with strangers because I don’t know what they might offer me. However, I’m also outspoken and overly engaged in discussions within familiar settings. In a classroom, I could easily forget other students while asking questions of the instructor. I focus on my interests and my purposes, to the exclusion of others. So, while I might not interact at a party, I will be too active in a classroom debate concerning a topic of personal interest. I’m either interested and excited by a topic, or disengaged. It is seldom people to which I respond, but specific topics or fields of study. 

6 comments:

  1. Another "live and let live" here.

    I enjoyed the first sentence.

    Also I liked the way you challenged the assumption of "asocial hermits" and "stalkers". "The reality is more complex" and then you showed us.

    "I focus on my interests and purposes".

    And the "shared history of frustrating social experiences". I like the way you showed different ways the social impairment comes out.

    Would like to read more about emotional proximity.

    Forward and frank!

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  2. Thank you for the kind words.

    I am attempting to write the book for two audiences: families and autistic individuals. I am, admittedly, not always good at anticipating what questions people might have. Also, the two audiences are quite different. Many families fear we won't be happy without large social networks or "normal" relationships, while I'm quite fine being in my small world.

    Hopefully, I can encourage communication with what I am writing.

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  3. Wouldn't it be more helpful and accurate to qualify your discussion to HFA? None of what you wrote really captures the experience of LFA but by using the term autism without qualification, your book may come over as being activist and will only be given credit by people that believe like you.

    I understand its an important topic to discuss your experience and the experiences of people you have some commonality with and it would be worthwhile for people outside the ASD community to read this. However, it leaves out a significant chunk of experiences of the ASD population.

    There is no need to give equal consideration of the non-verbal, ID and LFA communities in your ebook, especially if it falls outside your experience. However, I think qualifying the range of the spectrum your writing about will make your hard work more credible.

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  4. I hope this one section does not convey a primary focus on my experiences, which are included only to offer some insights beyond dry research or cognitive theories.

    As a researcher, I work with the "complete spectrum" and do include discussions with parents, caregivers, and educators with experiences interacting with the most challenged students. My mother is a one-on-one support aide in a public elementary school, which is one reason I have attempted to include concerns of those parents and educators.

    This is not a "dating guide" or "social guide" purely for the least impaired. However, I did make the decision to include chapters at the end of the text on those matters. I also indicate to readers that those topics are not, as some activists might wish, going to apply universally.

    I do believe there is a need to discuss family relationships and possible friendships for the most challenged. It is not comfortable topic for many, because the reality is that we do not know if some non-verbal children form bonds -- and we have no good way to test this.

    Yet, it was assumed I would not and could not speak or form bonds. I was diagnosed mentally retarded at birth. I do believe intensive time with my mother, who was active in all therapies from birth on, helped the neurological development. That, sadly, will *not* be the case for every family, even those making every imaginable effort.

    A final note, "autism" without qualifiers is the new standard of the APA. I am not completely comfortable with that, and have written so, but my writings should adhere to APA standards if I count them towards "tenure" at an institution. I try to clarify carefully, and include the DSM discussion because of this problem. I personally believe the single grouping will be problematic in the future.

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  5. One work which discussed bonds for the most affected is called Autistic Sexuality by Lindsay Weekes.

    It's the one I find myself recommending a lot, because it also talks about same-sex attraction. The relevant bit is probably in the last 2 paragraphs. He also talks about the definitions and what he uses. And I love the way it covers the gifted and the most affected.

    (More about bonds is also in A voice in the empty air: a cautionary tale).

    Autistic Sexuality by Lindsay Weekes

    Other books that I have read or am reading include Amy Gravino's The naughty autie; Travis Breeding's I want to be like you; Arman Khoaedi's Autism in Wonderland; Ian Ford's A Field Guide to Earthlings and Garry Burge's Life is not what it seems and I want to work. And there is Aaron Likens too. He's in your part of the world, Mr Wyatt.

    MAAP/OASIS also has some good material about relationships.

    ReplyDelete
  6. I'm familiar with only some of the titles. I do recognize most of the authors mentioned. I'm not really focused on the sexuality aspect, overall, though it is mentioned at the end of the manuscript.

    I know some of the names mentioned follow this blog and my Twitter feed, which I finally started in January. Twitter has definitely helped increased Web traffic to our sites.

    Likens is in the Midwest, somewhere. I should read his "Finding Kansas" this year. I have a few hundred books (literally) I am trying to read for another massive project.

    Thank your for the book suggestions.

    ReplyDelete

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