Growing Up Grassroots: Supporting the Emerging Self-Advocate with Autism by Valerie Paradiz, PhD
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Asperger’s syndrome
Growing Up Grassroots
Supporting the Emerging Self-Advocate with Autism
By Valerie Paradiz, PhD never knew I was a part of the autistic civil rights movement until many years after I had been an active participant in it. This might sound weird, but back in the 1990s, during our grassroots days when there were only a handful of self-advocates with ASD in the country, I was seeking out the company of people on the spectrum (and organizations they had founded). They felt like home to me and to my son Elijah, who was diagnosed with ASD in 1994 at age 3. I had yet to be diagnosed with Asperger’s syndrome. That would come later. However, convinced that meeting others on the spectrum was as important to Elijah’s development as his intensive early intervention program, I packed up the car with all of his most treasured stim-stuff and drove us to faraway places where auties and aspies1 were known to gather. One such event was Autreat, a 5-day, retreatstyle conference initiated in 1995 by disability advocates, Jim Sinclair and Donna Williams (www.autreat.org). Donna had become my hero. Her memoir, Nobody Nowhere, was one of the first to be published by someone on the spectrum. As I read her book, I felt I had encountered a kindred spirit, and when I heard her interviewed by Teri Gross on NPR’s Fresh Air, she sounded like a sister. I suppose I had a big red flashing arrow above my head back then, with the acronym APHID written on it. APHID is a term coined by Jerry Newport, another early leader in the self-advocacy community, standing for Autistic Parent Heavily in Denial. The attractive thing to me about our new friends was the fact that their organizations were run by autistic people for autistic people. I had never encountered anything like it. Not only did it seem like a good idea for people with autism to come together to learn from one another, but it was also history making! You can imagine how special it was in those days, when the diagnostic rate wasn’t the whopping 1 in 110 we’ve heard about in recent reports from the Centers for Disease Control. We had to travel far to find other like-minded folks who “got” the identity aspect of autism. These were advocates who didn’t view themselves strictly in medical or psychiatric terms or as a set of deficits in need of fixing. In fact, they resisted allowing others to identify them only in this way. It was refreshing to meet them, particularly after the arduous days of intensive therapy Elijah endured at school and home. So I walked through life telling myself this story: Elijah had a special community where he belonged, where he could be himself, where he didn’t have to work so hard to fit in all the time. The other part of that story was that I possessed shadow traits of autism. This helped me explain my little eccentricities, like my low sensory threshold for touch, smell, and a variety of (distracting) sounds and noises. I could relate to Elijah’s meltdowns over a bursting balloon or his anguish over a door being suddenly opened to allow other people’s talking voices to stream in from the another room, making it hard to concentrate. Little did I know that I needed our new autistic friends and the community as much as Elijah did. At Autreat, for example, I was mesmerized by the presentations offered, much more than the ones I had listened to at parent and professional conferences. These Autreat workshops had titles like “Dealing with Your Neurotypical Parents” or “How My Media Fixations Help Me in My Life.”
www.autismfile.com
Dr. Valerie Paradiz works as an independent consultant to schools, organizations, and agencies. She is the author of Elijah’s Cup, a memoir of her family’s involvement in the autistic self-advocacy community (Jessica Kingsley Publishers) and The Integrated Self- Advocacy ISA™ Curriculum (AAPC). For more information, visit www.ValerieParadiz.com.
1 “Aspie” is a term coined by Liane Holliday Willey, autistic self-advocate and author of the memoir Pretending to Be Normal. Willey created the word to direct thinking about people with Asperger’s syndrome away from a strictly psychiatric view. Like “aspie,” “autie” is also used by people on the spectrum as a way to refer to themselves on their own terms. Some people with autism use these expressions interchangeably. Though it is unknown who coined the word “autie,” it was being used in the very early days by those who attended the first Autreat conferences.
98 • THE AUTISM FILE USA 35 2010
REPRINTED WITH KIND PERMISSION © THE AUTISM FILE
Asperger’s syndrome
As years passed and Elijah grew older, I kept up the story of my shadow traits, in spite of the fact that I frequently struggled with depression and needed a lot of solitude to maintain my equilibrium. I taught literature and writing at Bard College, a private liberal arts school near our home in Woodstock, New York, and relentlessly pursued my research. But, I rarely sought out the company of fellow faculty members. In fact, I never attended faculty meetings and never volunteered to do committee work, mimicking the routines I had followed in high school, college, and grad school. I didn’t understand that in order to progress in the university system you had to develop relationships and create social networks with colleagues. I taught this way for 13 years, living under the radar, with the false assumption that one day I would simply be promoted to tenured assistant professor. Through Elijah’s life with autism, I met some of the closest friends I ever had, all of them on the spectrum. But when my aspie pals began to say things like, “Val, you’re busted,” there wasn’t any time, I told myself, to think about my own diagnosis or the ramifications of it. I was a single mom, working hard to keep our household afloat. It would take me a few more years to begin to see the irony of this. In 2001, when Elijah was in the fifth grade, he had a bad crisis. The source was primarily social; he had begun to feel like an outsider. He was severely depressed, feeling suicidal, and had to leave school. That’s when I (finally) gave up my job at the college and decided to initiate a full-day, educational program for students with Asperger’s syndrome in our community. It was called the School for Autistic Strength, Purpose and Independence in Education (ASPIE). Elijah attended the program and found safe harbor there. Though it no longer exists today (it lost funding after 3 years), ASPIE’s educational philosophy was based upon the principles of self-advocacy and self-determination. As part of the regular curriculum, I developed and taught a class for students to foster selfawareness and a safe forum for understanding autism. I felt at home in this class, as we explored important concepts like self-disclosure. When do you tell someone that you’re on the spectrum? Is it always safe to do so? The kids ate it up. They also liked our lessons on media literacy, during which we watched clips of news reports that involved autism. Analyzing key elements (such as who produced the story, who the intended audience was, and whether the presentation of what it’s like to be autistic was, in their minds, accurate or fair) opened doors to self-discovery and confidence. They were finding their voices! Directing the school was harder than teaching
As I listened to people on the spectrum share their own stories, early memories of sitting on the floor in the living room—my eyes one inch away from the television screen so that I could see the pretty little RGB dots lined up in nice rows—flickered across my mind. My long-time fascination with tornados, which still exists today (I collect videos clips and images of them, checking weather.com and other meteorological Web sites daily for the latest updates), began to take on new meaning. In grade school, I was thought to be severely shy, and I remember being nearly non-vocal my entire year of second grade due to the painful social anxiety I felt. As I grew older, I discovered that the structure of rigorous academics helped me compensate for my social insecurity and awkwardness. I got straight A’s in middle and high school. I went on through college the same way, achieving honors, and later completed a PhD in German literature giving the valedictory speech for our doctoral class. A good day to me was one filled with long hours of study and academic discipline. I was in control that way and didn’t have to manage uncomfortable social interactions, which were exhausting (and still are, even though I enjoy them more). In high school, I zealously followed the highly detailed lists I made for myself each day, including such details as how I’d navigate my way through the crowded hallways between classes, in the hopes of dodging as many moving bodies as I could (my tactile defensiveness hard at work). This had been my young life. If only I had known then what I know today, or better yet, if only I had had more skills in advocating for my sensory and social needs back then as I do today!
www.autismfile.com
As I listened to people on the spectrum share their own stories, early memories of sitting on the floor in the living room—my eyes one inch away from the television screen so that I could see the pretty little RGB dots lined up in nice rows—flickered across my mind.
REPRINTED WITH KIND PERMISSION © THE AUTISM FILE
THE AUTISM FILE USA 35 2010 •
99
Asperger’s syndrome
I bring up this point because I feel that many adults on the spectrum learn to ignore chronic health issues. We do so because we have been led to believe since we were very young that these symptoms are “behavioral” (our difficult moods) and therefore don’t merit treatment, such as using probiotics or avoiding particular types of foods.
the self-advocacy class. After being a timid professor for over a decade, I was suddenly the executive director of a school program (that ended up on the front page of The New York Times), supervising 15 full- and part-time staff, maintaining relationships with 16 families and their children, collaborating with our partner school district and its administration. My social learning curve was steep to say the least. So steep, in fact, that a new version of my story finally began to surface. The insomnia I remember having since I was a child was at an all-time high, and my GI and digestive problems had become so extreme that I was using up my sick days to lie in bed at home. Ever since I was a girl, I had experienced chronic abdominal pain and constipation (sorry for the bluntness, but the truth is important). It always grew worse under stress or whenever I was in socially tense situations, which for me is usually in groups of three or more people. I bring up this point because I feel that many adults on the spectrum learn to ignore chronic health issues. We do so because we have been led to believe since we were very young that these symptoms are “behavioral” (our difficult moods) and therefore don’t merit treatment, such as using probiotics or avoiding particular types of foods. Needless to say, my friends on the spectrum did an intervention and urged me to finally get evaluated. With their support, I decided to take part in a study on adults with Asperger’s syndrome at NYU Hospital in New York City. As a result of that 2004 study, I was diagnosed with Asperger’s syndrome. I was 40 years old. Coming out at this stage in my life was tougher than I imagined it would be. Adjusting to the new diagnosis, taking steps to improve my life and relationships, and knowing how to talk about it to others took several years. It was ironic to be in this position since for years I had fostered Elijah along to learn skills in expressing his needs, requesting accommodations, or celebrating his strengths. He knocked my socks off, when, as an older teen, he developed his deep interest in comedy into a full-blown standup career, traveling around the country to comedy festivals and autism conferences as “Mr. Inevitable,” performing hilarious acts about being on the spectrum. Meanwhile, I was taking my first baby steps grappling with my diagnosis. Elijah seemed light years ahead of me, feeling comfortable in his own autistic skin, while I faced the hard lesson of learning the deeper nuances of self-disclosure. Two years after my diagnosis, I was interviewed for a wonderful job directing a large training center at a big agency that provided educational programs, services, and residential placement for people with developmental disabilities.
During the interview, I made the naïve mistake of disclosing my Asperger’s syndrome. Though I was told at the time that my diagnosis would be an asset to the organization and was offered the job, the administrators abruptly changed their minds about hiring me just days before my start date, and after I had already moved to a nearby town to begin my work there. Veteran self-advocates with ASD offered insight, saying the sudden turnaround was probably political. Whatever the explanation, I learned a lot through that unfortunate experience and decided to formalize the selfadvocacy curriculum (released in November 2009 by AAPC) I had already developed several units of during my years at the ASPIE School. The next unit I decided to write dealt with teaching people on the spectrum the basic elements of the Americans with Disabilities Act, which ensures the right to not self-disclose during a job interview. Another chapter of the curriculum (and perhaps my all-time favorite because I must work hard every day to keep my sensory challenges in check) is the Sensory Scan™, which teaches students how to survey environments for their particular sensory discomforts, then create an Advocacy Plan to make themselves feel better (such as requesting an accommodation). We are currently piloting the Sensory Scan™ program in several public schools in New York City, collecting data to test whether knowing how to scan helps students with ASD experience fewer ineffective behaviors, like yelling, hitting, or even shutting down. I have worked in the educational fields as a professor, teacher, administrator, and self-advocate for nearly 25 years. Today, one important thing has begun to stand out for me: as much as we want the friends we care about on the spectrum to become independent, the support for achieving this dream is severely lacking in most programs and for people with ASD of all ages. In recent years, educators and therapists have discovered how critical developing social thinking and social skills are for people with autism, but we have yet to develop systems for showing and teaching individuals with ASD how they can be active shapers of their own quality of life. Self-advocacy is the missing link. Learning to advocate for environmental accommodations or finding out the basic elements of the Americans with Disabilities Act can be life changing. If you stop to think about it, self-advocacy plays a vital role in nearly every aspect of life for a person with ASD. The more self-awareness we on the spectrum possess about our condition, the more we can be players in advocating for our own comfort, happiness, productivity, and well-being.
www.autismfile.com
100 • THE AUTISM FILE USA 35 2010
REPRINTED WITH KIND PERMISSION © THE AUTISM FILE
Asperger’s syndrome
Growing Up Grassroots
Supporting the Emerging Self-Advocate with Autism
By Valerie Paradiz, PhD never knew I was a part of the autistic civil rights movement until many years after I had been an active participant in it. This might sound weird, but back in the 1990s, during our grassroots days when there were only a handful of self-advocates with ASD in the country, I was seeking out the company of people on the spectrum (and organizations they had founded). They felt like home to me and to my son Elijah, who was diagnosed with ASD in 1994 at age 3. I had yet to be diagnosed with Asperger’s syndrome. That would come later. However, convinced that meeting others on the spectrum was as important to Elijah’s development as his intensive early intervention program, I packed up the car with all of his most treasured stim-stuff and drove us to faraway places where auties and aspies1 were known to gather. One such event was Autreat, a 5-day, retreatstyle conference initiated in 1995 by disability advocates, Jim Sinclair and Donna Williams (www.autreat.org). Donna had become my hero. Her memoir, Nobody Nowhere, was one of the first to be published by someone on the spectrum. As I read her book, I felt I had encountered a kindred spirit, and when I heard her interviewed by Teri Gross on NPR’s Fresh Air, she sounded like a sister. I suppose I had a big red flashing arrow above my head back then, with the acronym APHID written on it. APHID is a term coined by Jerry Newport, another early leader in the self-advocacy community, standing for Autistic Parent Heavily in Denial. The attractive thing to me about our new friends was the fact that their organizations were run by autistic people for autistic people. I had never encountered anything like it. Not only did it seem like a good idea for people with autism to come together to learn from one another, but it was also history making! You can imagine how special it was in those days, when the diagnostic rate wasn’t the whopping 1 in 110 we’ve heard about in recent reports from the Centers for Disease Control. We had to travel far to find other like-minded folks who “got” the identity aspect of autism. These were advocates who didn’t view themselves strictly in medical or psychiatric terms or as a set of deficits in need of fixing. In fact, they resisted allowing others to identify them only in this way. It was refreshing to meet them, particularly after the arduous days of intensive therapy Elijah endured at school and home. So I walked through life telling myself this story: Elijah had a special community where he belonged, where he could be himself, where he didn’t have to work so hard to fit in all the time. The other part of that story was that I possessed shadow traits of autism. This helped me explain my little eccentricities, like my low sensory threshold for touch, smell, and a variety of (distracting) sounds and noises. I could relate to Elijah’s meltdowns over a bursting balloon or his anguish over a door being suddenly opened to allow other people’s talking voices to stream in from the another room, making it hard to concentrate. Little did I know that I needed our new autistic friends and the community as much as Elijah did. At Autreat, for example, I was mesmerized by the presentations offered, much more than the ones I had listened to at parent and professional conferences. These Autreat workshops had titles like “Dealing with Your Neurotypical Parents” or “How My Media Fixations Help Me in My Life.”
www.autismfile.com
Dr. Valerie Paradiz works as an independent consultant to schools, organizations, and agencies. She is the author of Elijah’s Cup, a memoir of her family’s involvement in the autistic self-advocacy community (Jessica Kingsley Publishers) and The Integrated Self- Advocacy ISA™ Curriculum (AAPC). For more information, visit www.ValerieParadiz.com.
1 “Aspie” is a term coined by Liane Holliday Willey, autistic self-advocate and author of the memoir Pretending to Be Normal. Willey created the word to direct thinking about people with Asperger’s syndrome away from a strictly psychiatric view. Like “aspie,” “autie” is also used by people on the spectrum as a way to refer to themselves on their own terms. Some people with autism use these expressions interchangeably. Though it is unknown who coined the word “autie,” it was being used in the very early days by those who attended the first Autreat conferences.
98 • THE AUTISM FILE USA 35 2010
REPRINTED WITH KIND PERMISSION © THE AUTISM FILE
Asperger’s syndrome
As years passed and Elijah grew older, I kept up the story of my shadow traits, in spite of the fact that I frequently struggled with depression and needed a lot of solitude to maintain my equilibrium. I taught literature and writing at Bard College, a private liberal arts school near our home in Woodstock, New York, and relentlessly pursued my research. But, I rarely sought out the company of fellow faculty members. In fact, I never attended faculty meetings and never volunteered to do committee work, mimicking the routines I had followed in high school, college, and grad school. I didn’t understand that in order to progress in the university system you had to develop relationships and create social networks with colleagues. I taught this way for 13 years, living under the radar, with the false assumption that one day I would simply be promoted to tenured assistant professor. Through Elijah’s life with autism, I met some of the closest friends I ever had, all of them on the spectrum. But when my aspie pals began to say things like, “Val, you’re busted,” there wasn’t any time, I told myself, to think about my own diagnosis or the ramifications of it. I was a single mom, working hard to keep our household afloat. It would take me a few more years to begin to see the irony of this. In 2001, when Elijah was in the fifth grade, he had a bad crisis. The source was primarily social; he had begun to feel like an outsider. He was severely depressed, feeling suicidal, and had to leave school. That’s when I (finally) gave up my job at the college and decided to initiate a full-day, educational program for students with Asperger’s syndrome in our community. It was called the School for Autistic Strength, Purpose and Independence in Education (ASPIE). Elijah attended the program and found safe harbor there. Though it no longer exists today (it lost funding after 3 years), ASPIE’s educational philosophy was based upon the principles of self-advocacy and self-determination. As part of the regular curriculum, I developed and taught a class for students to foster selfawareness and a safe forum for understanding autism. I felt at home in this class, as we explored important concepts like self-disclosure. When do you tell someone that you’re on the spectrum? Is it always safe to do so? The kids ate it up. They also liked our lessons on media literacy, during which we watched clips of news reports that involved autism. Analyzing key elements (such as who produced the story, who the intended audience was, and whether the presentation of what it’s like to be autistic was, in their minds, accurate or fair) opened doors to self-discovery and confidence. They were finding their voices! Directing the school was harder than teaching
As I listened to people on the spectrum share their own stories, early memories of sitting on the floor in the living room—my eyes one inch away from the television screen so that I could see the pretty little RGB dots lined up in nice rows—flickered across my mind. My long-time fascination with tornados, which still exists today (I collect videos clips and images of them, checking weather.com and other meteorological Web sites daily for the latest updates), began to take on new meaning. In grade school, I was thought to be severely shy, and I remember being nearly non-vocal my entire year of second grade due to the painful social anxiety I felt. As I grew older, I discovered that the structure of rigorous academics helped me compensate for my social insecurity and awkwardness. I got straight A’s in middle and high school. I went on through college the same way, achieving honors, and later completed a PhD in German literature giving the valedictory speech for our doctoral class. A good day to me was one filled with long hours of study and academic discipline. I was in control that way and didn’t have to manage uncomfortable social interactions, which were exhausting (and still are, even though I enjoy them more). In high school, I zealously followed the highly detailed lists I made for myself each day, including such details as how I’d navigate my way through the crowded hallways between classes, in the hopes of dodging as many moving bodies as I could (my tactile defensiveness hard at work). This had been my young life. If only I had known then what I know today, or better yet, if only I had had more skills in advocating for my sensory and social needs back then as I do today!
www.autismfile.com
As I listened to people on the spectrum share their own stories, early memories of sitting on the floor in the living room—my eyes one inch away from the television screen so that I could see the pretty little RGB dots lined up in nice rows—flickered across my mind.
REPRINTED WITH KIND PERMISSION © THE AUTISM FILE
THE AUTISM FILE USA 35 2010 •
99
Asperger’s syndrome
I bring up this point because I feel that many adults on the spectrum learn to ignore chronic health issues. We do so because we have been led to believe since we were very young that these symptoms are “behavioral” (our difficult moods) and therefore don’t merit treatment, such as using probiotics or avoiding particular types of foods.
the self-advocacy class. After being a timid professor for over a decade, I was suddenly the executive director of a school program (that ended up on the front page of The New York Times), supervising 15 full- and part-time staff, maintaining relationships with 16 families and their children, collaborating with our partner school district and its administration. My social learning curve was steep to say the least. So steep, in fact, that a new version of my story finally began to surface. The insomnia I remember having since I was a child was at an all-time high, and my GI and digestive problems had become so extreme that I was using up my sick days to lie in bed at home. Ever since I was a girl, I had experienced chronic abdominal pain and constipation (sorry for the bluntness, but the truth is important). It always grew worse under stress or whenever I was in socially tense situations, which for me is usually in groups of three or more people. I bring up this point because I feel that many adults on the spectrum learn to ignore chronic health issues. We do so because we have been led to believe since we were very young that these symptoms are “behavioral” (our difficult moods) and therefore don’t merit treatment, such as using probiotics or avoiding particular types of foods. Needless to say, my friends on the spectrum did an intervention and urged me to finally get evaluated. With their support, I decided to take part in a study on adults with Asperger’s syndrome at NYU Hospital in New York City. As a result of that 2004 study, I was diagnosed with Asperger’s syndrome. I was 40 years old. Coming out at this stage in my life was tougher than I imagined it would be. Adjusting to the new diagnosis, taking steps to improve my life and relationships, and knowing how to talk about it to others took several years. It was ironic to be in this position since for years I had fostered Elijah along to learn skills in expressing his needs, requesting accommodations, or celebrating his strengths. He knocked my socks off, when, as an older teen, he developed his deep interest in comedy into a full-blown standup career, traveling around the country to comedy festivals and autism conferences as “Mr. Inevitable,” performing hilarious acts about being on the spectrum. Meanwhile, I was taking my first baby steps grappling with my diagnosis. Elijah seemed light years ahead of me, feeling comfortable in his own autistic skin, while I faced the hard lesson of learning the deeper nuances of self-disclosure. Two years after my diagnosis, I was interviewed for a wonderful job directing a large training center at a big agency that provided educational programs, services, and residential placement for people with developmental disabilities.
During the interview, I made the naïve mistake of disclosing my Asperger’s syndrome. Though I was told at the time that my diagnosis would be an asset to the organization and was offered the job, the administrators abruptly changed their minds about hiring me just days before my start date, and after I had already moved to a nearby town to begin my work there. Veteran self-advocates with ASD offered insight, saying the sudden turnaround was probably political. Whatever the explanation, I learned a lot through that unfortunate experience and decided to formalize the selfadvocacy curriculum (released in November 2009 by AAPC) I had already developed several units of during my years at the ASPIE School. The next unit I decided to write dealt with teaching people on the spectrum the basic elements of the Americans with Disabilities Act, which ensures the right to not self-disclose during a job interview. Another chapter of the curriculum (and perhaps my all-time favorite because I must work hard every day to keep my sensory challenges in check) is the Sensory Scan™, which teaches students how to survey environments for their particular sensory discomforts, then create an Advocacy Plan to make themselves feel better (such as requesting an accommodation). We are currently piloting the Sensory Scan™ program in several public schools in New York City, collecting data to test whether knowing how to scan helps students with ASD experience fewer ineffective behaviors, like yelling, hitting, or even shutting down. I have worked in the educational fields as a professor, teacher, administrator, and self-advocate for nearly 25 years. Today, one important thing has begun to stand out for me: as much as we want the friends we care about on the spectrum to become independent, the support for achieving this dream is severely lacking in most programs and for people with ASD of all ages. In recent years, educators and therapists have discovered how critical developing social thinking and social skills are for people with autism, but we have yet to develop systems for showing and teaching individuals with ASD how they can be active shapers of their own quality of life. Self-advocacy is the missing link. Learning to advocate for environmental accommodations or finding out the basic elements of the Americans with Disabilities Act can be life changing. If you stop to think about it, self-advocacy plays a vital role in nearly every aspect of life for a person with ASD. The more self-awareness we on the spectrum possess about our condition, the more we can be players in advocating for our own comfort, happiness, productivity, and well-being.
www.autismfile.com
100 • THE AUTISM FILE USA 35 2010
REPRINTED WITH KIND PERMISSION © THE AUTISM FILE
