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.
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.