I wrote this in response to a criticism. Someone did not think I was "autistic enough" as she did not notice me quoting from television. As I have not watched much television in 25 years I had to recall the common phrases I used as a teen. This was written in October 2008.
Articulate Aspergian Quoting
I am California Dreaming
As I reach out for Good Vibrations
And With a Little Help from my Friends
I will gleefully Sit on the Dock of a Bay
And my mission-should I choose to accept it-
Will be to Never Give up, Never Surrender!
I do not look for trouble
But trouble always seems to find me;
When I am Lost in Translation
I Phone Home so I can Be Good;
And my mission-should I choose to accept it-
Is to Boldly Go where No One has gone Before!
Being a Stranger in a Strange Land
Allows me to Quantum Leap through time
Although I do not know
What Not to Wear, and
Apparently what not to say,
My mission-should I choose to accept it-
Is to Reach out, reach out and touch someone.
If life is just a bowl of cherries
Then are we not all Fruit Loops?
And if Time can put in a Bottle,
Then what is the next thing that I should do?
My mission-should I choose to accept it-
Is to be a Myth Buster!
Can I Sing Clearly now?
While Walking on Sunshine,
Putting a Little Love in My Heart,
I will Never Walk Alone.
My mission-should I choose to accept it-
Is if music be the food of Love, I will play on.
I just do not want to be an Oscar Mayer Weiner.
Friday, December 19, 2008
Married, with Asperger's
Published in AANE Journal November 2008
Married, with Asperger’s
He is finally trained! My husband of 26 years has not completed a sentence but once this year. Like most neurotypical people, Christopher has a tendency to want to finish someone’s sentence when there is a pause. That is not helpful for me.
I received my diagnosis of Asperger’s Syndrome in 1994 shortly after the birth of our fourth child. This was a wonderful event for me! Finally there was an explanation for lost jobs, lost friends, and lost opportunities. My husband spied an article taped to the classroom door of a colleague about Temple Grandin, snatched it and photocopied it. He immediately recognized her pattern of thought and behaviors as similar to those of his wife. We went to a local specialist. Then I went to a regional expert. And after the birth of our fifth child I spent two years with a psychologist friend sorting out my past and healing my wounded heart.
Until recently women were not diagnosed with Autism conditions. I did not speak until I was almost 4 years old. My mother thought that being quiet was a gift. I was a very “easy” baby. I had numerous infections, particularly ear infections, and was subjected to many antibiotic treatments. Some of these resulted in life threatening reactions.
I was a loner, preferring the woodlands and lakes and streams to people. I was never read to and I suspect my language developed as a result of the television—particularly soap operas—being on all day. In school I continued my aloneness, lurking near the trees at the edge of the playground and watching the other children play games, screaming and laughing. I refused to participate in group discussions or reading time, preferring the art table and making painting after painting with my fingers. I also enjoyed sculpting with clay.
In third grade I was tested and my IQ was rated at 80, but the teachers thought I was bright. In fourth grade my teacher demanded that I learn to read. Apparently I was the class clown, “reading” the pictures in our books. I did learn but reading was very difficult until sixth grade when I learned to speed read. Finally the words on the page made pictures and my expressive skills, especially writing, caught up with my receptive skills! By tenth grade I was tested with an IQ of 150.
But I was always the odd one, shunned by the cool crowd. This shifted a little bit when I learned to play guitar and later became involved with the drama club.
I never wanted to get married or have children, and the fact that I have been married for 26 years and have 5 children amazes me. My eldest son is 22. He experienced what is now termed regressive autism just before his first birthday. I spent the next 18 months ignoring housework and playing with him on the floor, invading his space. What I did is similar to Dr. Stanley Greenspan’s Floortime®. He has since pursued an associate’s degree in his special area of interest—cars.
My daughter at age 19 is much more typical in her behaviors. She is very social, outgoing, and intelligent. Our third child is 18 and struggled with ADHD. They are both attending community college part time. Our fourth child is now 14 and is our Asperger’s child. It is difficult because even though I know so much about autism he is very different from me and my heart hurts as I watch him struggle with the social rules. Our youngest son is almost 10 and 100% boy, running about, engaging in active play, chattering excitedly about whatever interests him at the moment.
I home educate all our children. And my husband, who is a special education teacher at the upper elementary level. When I recently went to a neurologist for follow up tests he wryly suggested that I was my husband’s best student. I immediately retorted “No, he is mine.”
And this is true, as Christopher regularly requests my insight with his students on the spectrum!
For 12 years I did nothing about my diagnosis except further my own understanding and develop more sensory adaptations. If a crisis occurred in a relationship I explained autism and its ramifications. Sadly the most frequent response to continued faux pas was along the line “I can’t deal with you anymore…I can’t believe that someone so smart can be so stupid.”
This brings me back to my family and life with Asperger’s Syndrome. My children are well-trained. I often disappear into the bathroom when I need a sensory break, a quiet withdrawal from the constant noise of boys and chatter of girls. They know to not approach me unless someone is close to dying. In the car we have a code. “Mamie’s on overload” is the phrase for turning off the radio, turning down the air conditioner, and reducing interactions. When we enter a city enroute to visiting family I state “We are all on silence until we are out of traffic.” I think that this might make them prone to entering a monastery, but they all understand that I have to completely focus on the numerous automobiles and dangerous drivers in high traffic. And they all know to not finish my sentences!
Last Spring I proffered my usual apology for not bringing them up in a normal fashion. We were driving around town on errands and I was feeling sad about something. My middle son smiled calmly and replied “That’s okay, Mamie. We prefer to be lamron.” It didn’t take me long to realize this was normal—backward.
So one positive result of living with a mother with sensory and cognitive difficulties is that my children have a great sense of humor!
My husband has been so supportive and he regularly illuminates my differences with excellent metaphors. The most useful one is that he compares my mind to 30 Pentium II® processors. I am always running the permutations of a social circumstance, what do people intend? What does this person mean? What is the appropriate response? It explains how it appears that I am distracted but I am actually running programs until I find the best one for an event or interaction.
Some of the relationship challenges are due to word usage. I used to read the dictionary and I use words literally. I have gotten better with metaphors, but I prefer to think of these as parallels, looking for events that mimic the pattern that I am seeing in daily life. Puns are not just “groaners” for me, they are outright incomprehensible! Jokes follow the same response: “Um.” This is mostly a problem for that certain age amongst young boys when they discover joke and riddle books. So I have had nearly a decade of practice in understanding humor! What’s invisible and smells like carrots? Bunny farts! Oh yes, little boy humor is amazing!
When I was in my 20’s I was attracted to organic gardening and natural foods. I was alert 30 years ago to gluten and dairy sensitivities. So I have been eating similar to the DAN! protocol for decades. This is how I meet so many parents who have recently diagnosed children. I am standing in the natural, gluten free foods at the supermarket and there is a mother (usually!) with a sheaf of papers and tears in her eyes. When she notices my confident acquisition of food products she asks “Do you know about gluten free diets?” My positive response encourages her and we exchange phone numbers.
Now, added to my family activities, are many presentations across the region and now in California and Tennessee at the national TASH disability rights conference. As I interacted with all these families I realized that I have something important to offer: hope. Two years ago I went to a family support workshop called “Building Social Bridges” presented by Cathy Apfel. Two other mothers were supposed to attend with me but they bowed out at the last moment. I hate crowds but I chose to attend this meeting anyway. I got there later than when I prefer so I could not sit down near the escape path and in front at the edge of the crowd—and it was crowded! As the workshop proceeded, I asked a lot of questions, and I had a lot of answers. It became almost a private conversation with Cathy, and we exchanged email addresses. I tried to escape but I was cornered by a group of parents. This frightened me enormously, but it was also that epiphany, the moment when I realized that what I had accomplished in my life and family could offer hope and courage to families with children on the spectrum.
Cathy is now my closest friend. She is like my husband, calm, and good with explanations. She helps me interpret the social rules, and her encouragement keeps me going. I do presentations with her now through the Institute on Disability/UCE (UNH) as well as presentations to schools and support groups. My husband is supportive and radiantly tells everyone that his wife is a great presenter. My children think that my workshops are fun even though they also miss me when I am away.
As for me, I finally feel like planet Earth feels like a safe place, almost like home. When the film ET came out, I cried through much of it, particularly when the little alien plaintively pointed to the stars and said “Home—phone home.” My earliest memories are of late nights, gazing out of my bedroom window at the constellations and wondering when I might go home. I knew I did not “fit in” at an early age. Now I know many Asperger adults and youth with the same longing for home and love of the stars, of all things sparkly or shiny.
I have begun giving myself little gifts. I eat my food the way I want to—in orderly patterns, one color at a time, and often with a spoon as I am still dyslexic. I wear clothing in unusual combinations. Recently a coworker inquired on a casual dress day if my cape and scarf were part of my costume. Of course they weren’t! Most especially I give myself permission to close or direct my eye gaze when and where I want, controlling sensory overload and that sense of invasion that eye contact brings on. After five babies I am comfortable gently rocking and even occasionally spinning. I carry fidgets like smooth stones or Silly Putty® in my pockets, and I am unconcerned about taking them out when they are needed. My best gift is my service dog, Shakespeare Aristotle, a dachshund mix who I trained for voice and hand signals. When I travel he is my best friend, keeping me calm and centered in busy airports and metropolitan centers.
I work at McDonald’s, which is not the best job for sensory issues with all the beeps and buzzers and machinery fans blowing. But I worked at McDonald’s as a teenager and it has good and fun memories. I took the risk of disclosing my diagnosis and explaining what I needed from management and they are doing it! They use my name and explain fully what they need. I get little breaks after lunch rush. I love this job because all of the policies are clearly explained and the routine—“Hi! Welcome to McDonald’s!”—is constant. I do not have to become anyone’s friend so I am free to be a bit goofy. Best of all I get to talk with parents and grandparents when they bring in their children who—to me—are obviously on the autism spectrum. It is a little thing, but it is one more time where I can educate a little bit and encourage a whole lot.
That is the greatest gift of life with family. When I have a meltdown, they love me anyway. When I wear weird clothing, they love me anyway. When I do not get their jokes, they explain them and then actually repeat them so I get to laugh with them. When I cannot stand to be touched or hugged they blow me kisses. When we argue because I so did not “get” their choice of words (and this happens A LOT in adolescence!), they are willing to talk it out, and we grow closer. This empowers me to keep going, to keep talking to others. I have my “anchor.” I have examples of loving behavior that I can reflect back to others in my community.
After 54 years on planet Earth, I have a mission, and I choose to accept it.
Married, with Asperger’s
He is finally trained! My husband of 26 years has not completed a sentence but once this year. Like most neurotypical people, Christopher has a tendency to want to finish someone’s sentence when there is a pause. That is not helpful for me.
I received my diagnosis of Asperger’s Syndrome in 1994 shortly after the birth of our fourth child. This was a wonderful event for me! Finally there was an explanation for lost jobs, lost friends, and lost opportunities. My husband spied an article taped to the classroom door of a colleague about Temple Grandin, snatched it and photocopied it. He immediately recognized her pattern of thought and behaviors as similar to those of his wife. We went to a local specialist. Then I went to a regional expert. And after the birth of our fifth child I spent two years with a psychologist friend sorting out my past and healing my wounded heart.
Until recently women were not diagnosed with Autism conditions. I did not speak until I was almost 4 years old. My mother thought that being quiet was a gift. I was a very “easy” baby. I had numerous infections, particularly ear infections, and was subjected to many antibiotic treatments. Some of these resulted in life threatening reactions.
I was a loner, preferring the woodlands and lakes and streams to people. I was never read to and I suspect my language developed as a result of the television—particularly soap operas—being on all day. In school I continued my aloneness, lurking near the trees at the edge of the playground and watching the other children play games, screaming and laughing. I refused to participate in group discussions or reading time, preferring the art table and making painting after painting with my fingers. I also enjoyed sculpting with clay.
In third grade I was tested and my IQ was rated at 80, but the teachers thought I was bright. In fourth grade my teacher demanded that I learn to read. Apparently I was the class clown, “reading” the pictures in our books. I did learn but reading was very difficult until sixth grade when I learned to speed read. Finally the words on the page made pictures and my expressive skills, especially writing, caught up with my receptive skills! By tenth grade I was tested with an IQ of 150.
But I was always the odd one, shunned by the cool crowd. This shifted a little bit when I learned to play guitar and later became involved with the drama club.
I never wanted to get married or have children, and the fact that I have been married for 26 years and have 5 children amazes me. My eldest son is 22. He experienced what is now termed regressive autism just before his first birthday. I spent the next 18 months ignoring housework and playing with him on the floor, invading his space. What I did is similar to Dr. Stanley Greenspan’s Floortime®. He has since pursued an associate’s degree in his special area of interest—cars.
My daughter at age 19 is much more typical in her behaviors. She is very social, outgoing, and intelligent. Our third child is 18 and struggled with ADHD. They are both attending community college part time. Our fourth child is now 14 and is our Asperger’s child. It is difficult because even though I know so much about autism he is very different from me and my heart hurts as I watch him struggle with the social rules. Our youngest son is almost 10 and 100% boy, running about, engaging in active play, chattering excitedly about whatever interests him at the moment.
I home educate all our children. And my husband, who is a special education teacher at the upper elementary level. When I recently went to a neurologist for follow up tests he wryly suggested that I was my husband’s best student. I immediately retorted “No, he is mine.”
And this is true, as Christopher regularly requests my insight with his students on the spectrum!
For 12 years I did nothing about my diagnosis except further my own understanding and develop more sensory adaptations. If a crisis occurred in a relationship I explained autism and its ramifications. Sadly the most frequent response to continued faux pas was along the line “I can’t deal with you anymore…I can’t believe that someone so smart can be so stupid.”
This brings me back to my family and life with Asperger’s Syndrome. My children are well-trained. I often disappear into the bathroom when I need a sensory break, a quiet withdrawal from the constant noise of boys and chatter of girls. They know to not approach me unless someone is close to dying. In the car we have a code. “Mamie’s on overload” is the phrase for turning off the radio, turning down the air conditioner, and reducing interactions. When we enter a city enroute to visiting family I state “We are all on silence until we are out of traffic.” I think that this might make them prone to entering a monastery, but they all understand that I have to completely focus on the numerous automobiles and dangerous drivers in high traffic. And they all know to not finish my sentences!
Last Spring I proffered my usual apology for not bringing them up in a normal fashion. We were driving around town on errands and I was feeling sad about something. My middle son smiled calmly and replied “That’s okay, Mamie. We prefer to be lamron.” It didn’t take me long to realize this was normal—backward.
So one positive result of living with a mother with sensory and cognitive difficulties is that my children have a great sense of humor!
My husband has been so supportive and he regularly illuminates my differences with excellent metaphors. The most useful one is that he compares my mind to 30 Pentium II® processors. I am always running the permutations of a social circumstance, what do people intend? What does this person mean? What is the appropriate response? It explains how it appears that I am distracted but I am actually running programs until I find the best one for an event or interaction.
Some of the relationship challenges are due to word usage. I used to read the dictionary and I use words literally. I have gotten better with metaphors, but I prefer to think of these as parallels, looking for events that mimic the pattern that I am seeing in daily life. Puns are not just “groaners” for me, they are outright incomprehensible! Jokes follow the same response: “Um.” This is mostly a problem for that certain age amongst young boys when they discover joke and riddle books. So I have had nearly a decade of practice in understanding humor! What’s invisible and smells like carrots? Bunny farts! Oh yes, little boy humor is amazing!
When I was in my 20’s I was attracted to organic gardening and natural foods. I was alert 30 years ago to gluten and dairy sensitivities. So I have been eating similar to the DAN! protocol for decades. This is how I meet so many parents who have recently diagnosed children. I am standing in the natural, gluten free foods at the supermarket and there is a mother (usually!) with a sheaf of papers and tears in her eyes. When she notices my confident acquisition of food products she asks “Do you know about gluten free diets?” My positive response encourages her and we exchange phone numbers.
Now, added to my family activities, are many presentations across the region and now in California and Tennessee at the national TASH disability rights conference. As I interacted with all these families I realized that I have something important to offer: hope. Two years ago I went to a family support workshop called “Building Social Bridges” presented by Cathy Apfel. Two other mothers were supposed to attend with me but they bowed out at the last moment. I hate crowds but I chose to attend this meeting anyway. I got there later than when I prefer so I could not sit down near the escape path and in front at the edge of the crowd—and it was crowded! As the workshop proceeded, I asked a lot of questions, and I had a lot of answers. It became almost a private conversation with Cathy, and we exchanged email addresses. I tried to escape but I was cornered by a group of parents. This frightened me enormously, but it was also that epiphany, the moment when I realized that what I had accomplished in my life and family could offer hope and courage to families with children on the spectrum.
Cathy is now my closest friend. She is like my husband, calm, and good with explanations. She helps me interpret the social rules, and her encouragement keeps me going. I do presentations with her now through the Institute on Disability/UCE (UNH) as well as presentations to schools and support groups. My husband is supportive and radiantly tells everyone that his wife is a great presenter. My children think that my workshops are fun even though they also miss me when I am away.
As for me, I finally feel like planet Earth feels like a safe place, almost like home. When the film ET came out, I cried through much of it, particularly when the little alien plaintively pointed to the stars and said “Home—phone home.” My earliest memories are of late nights, gazing out of my bedroom window at the constellations and wondering when I might go home. I knew I did not “fit in” at an early age. Now I know many Asperger adults and youth with the same longing for home and love of the stars, of all things sparkly or shiny.
I have begun giving myself little gifts. I eat my food the way I want to—in orderly patterns, one color at a time, and often with a spoon as I am still dyslexic. I wear clothing in unusual combinations. Recently a coworker inquired on a casual dress day if my cape and scarf were part of my costume. Of course they weren’t! Most especially I give myself permission to close or direct my eye gaze when and where I want, controlling sensory overload and that sense of invasion that eye contact brings on. After five babies I am comfortable gently rocking and even occasionally spinning. I carry fidgets like smooth stones or Silly Putty® in my pockets, and I am unconcerned about taking them out when they are needed. My best gift is my service dog, Shakespeare Aristotle, a dachshund mix who I trained for voice and hand signals. When I travel he is my best friend, keeping me calm and centered in busy airports and metropolitan centers.
I work at McDonald’s, which is not the best job for sensory issues with all the beeps and buzzers and machinery fans blowing. But I worked at McDonald’s as a teenager and it has good and fun memories. I took the risk of disclosing my diagnosis and explaining what I needed from management and they are doing it! They use my name and explain fully what they need. I get little breaks after lunch rush. I love this job because all of the policies are clearly explained and the routine—“Hi! Welcome to McDonald’s!”—is constant. I do not have to become anyone’s friend so I am free to be a bit goofy. Best of all I get to talk with parents and grandparents when they bring in their children who—to me—are obviously on the autism spectrum. It is a little thing, but it is one more time where I can educate a little bit and encourage a whole lot.
That is the greatest gift of life with family. When I have a meltdown, they love me anyway. When I wear weird clothing, they love me anyway. When I do not get their jokes, they explain them and then actually repeat them so I get to laugh with them. When I cannot stand to be touched or hugged they blow me kisses. When we argue because I so did not “get” their choice of words (and this happens A LOT in adolescence!), they are willing to talk it out, and we grow closer. This empowers me to keep going, to keep talking to others. I have my “anchor.” I have examples of loving behavior that I can reflect back to others in my community.
After 54 years on planet Earth, I have a mission, and I choose to accept it.
Wednesday, May 7, 2008
Your Mission, should you choose to accept it...
A history Lesson
Another job lost. Another friend departs. What was I doing wrong?
In 1993 my husband Christopher saw a newspaper articles on Temple Grandin, photocopied it and brought it home. Shortly thereafter I received my diagnosis: Asperger’s Syndrome.
My name is CarolAnn Edscorn and I live in Jaffrey, NH, with my husband, five children, two dogs and two cats. My age is a bit past the half-century mark. I am a published essayist, artist, and playwright as well as a musician and songwriter. I have a Bachelor of Fine Arts degree in Acting and Directing, a Master of Science in Urban Affairs Management and Public Policy Analysis (focusing on health and education issues) and I just completed the Autism Spectrum (Disorder) Certificate Program at Antioch University in Keene, NH.
I was recently invited to be on the Leadership Board for the New Hampshire chapter of Asperger’s Association of New England (AANE).
When I learned about Asperger’s Syndrome I was so happy! Finally! An explanation of all the gaffes and social faux pas and misunderstandings in my life was and is a blessing for my family and me.
However, I did nothing for others living in autism. Life went on and I researched books, then all over the Web—which confused me a lot at first, until I found the ‘threads’ that wove a beautiful comforter. I went to church, performed in community theater, and lost jobs and lost friends. I didn’t change. I didn’t take any Real Risks. I pretended to be normal still.
Then, in October of 2006, I went to a presentation on Building Social Bridges by Cathy Apfel at The Family Center of Peterborough. I was supposed to go with two mothers with children of autism but they canceled. Grabbing a bit of courage I went anyway, alone. The fear and anger in the room was palpable to me. Parents were yearning for answers, for hope, for methods that would improve the lives of their children. I kept asking questions, sharing my life and what I knew then. (I know a lot more now!) Afterward I tried to escape. Sensory overload is a powerful motivator. But parents were asking me questions, and searching so hard for hope. They surrounded me. I could give that to them.
Cathy Apfel took my email address and phone number. This began my new journey and a great new friendship. I met with the Institute on Disability representatives and set up a workshop with Cathy. That was in March of 2007. Then the IOD invited me to be a keynote speaker at their Autism Summer Institute, along with facilitating the workshops. My topic was Presuming Competence in Friendship. I cried a lot writing that presentation. I did not feel at all competent in making and keeping friends! But myself-reflections were important and radiated hope to many educators and parents attending the Institute.
I gave another Building Social Bridges workshop in October of 2007 and again this past April. I have offered independent teacher workshops. I enrolled at Antioch University New England where I met many wonderful educators, parents, and speech and language professionals. I now have the words and methodologies for better communication.
I met Erin Gruwell of the Freedom Writers’ Foundation and have been to Los Angeles twice now to witness to hope and freedom. Jeff Strully has invited Cathy and myself to the national TASH conference in Nashville. AANE has invited me to present at their major regional conference this coming October. The local parent support group wants me to present a series of topics.
My family is proud of me for finding my voice finally and having the courage to go out into the world and help others. Most of my life my ‘voice’ has been quotes from books, movies, poetry and especially songs. Now I have my own voice, my own words. And if I can help parents and educators understand the truth about autism, then I am changing the world for good.
I offer workshops both through the IOD and as an independent contractor. I will again be a keynote speaker at the IOD’s Autism Summer Institute in August at UNH. I am in the processing of signing a book proposal. I have a blog site and a Web site. I even have business cards and brochures. Such a new adventure!
All of this is possible because of my new friends and mentors, Cathy Apfel and Shelley Viles who is the ASD graduate program director and on the Leadership Board of the AANE New Hampshire chapter. My family is fabulous—an example of love, encouragement, and being truly present.
This is the mission of my life: to spread hope and reframe the dreams. Autism is here. Autism is a gift. Join the journey. Embrace the joy.
Another job lost. Another friend departs. What was I doing wrong?
In 1993 my husband Christopher saw a newspaper articles on Temple Grandin, photocopied it and brought it home. Shortly thereafter I received my diagnosis: Asperger’s Syndrome.
My name is CarolAnn Edscorn and I live in Jaffrey, NH, with my husband, five children, two dogs and two cats. My age is a bit past the half-century mark. I am a published essayist, artist, and playwright as well as a musician and songwriter. I have a Bachelor of Fine Arts degree in Acting and Directing, a Master of Science in Urban Affairs Management and Public Policy Analysis (focusing on health and education issues) and I just completed the Autism Spectrum (Disorder) Certificate Program at Antioch University in Keene, NH.
I was recently invited to be on the Leadership Board for the New Hampshire chapter of Asperger’s Association of New England (AANE).
When I learned about Asperger’s Syndrome I was so happy! Finally! An explanation of all the gaffes and social faux pas and misunderstandings in my life was and is a blessing for my family and me.
However, I did nothing for others living in autism. Life went on and I researched books, then all over the Web—which confused me a lot at first, until I found the ‘threads’ that wove a beautiful comforter. I went to church, performed in community theater, and lost jobs and lost friends. I didn’t change. I didn’t take any Real Risks. I pretended to be normal still.
Then, in October of 2006, I went to a presentation on Building Social Bridges by Cathy Apfel at The Family Center of Peterborough. I was supposed to go with two mothers with children of autism but they canceled. Grabbing a bit of courage I went anyway, alone. The fear and anger in the room was palpable to me. Parents were yearning for answers, for hope, for methods that would improve the lives of their children. I kept asking questions, sharing my life and what I knew then. (I know a lot more now!) Afterward I tried to escape. Sensory overload is a powerful motivator. But parents were asking me questions, and searching so hard for hope. They surrounded me. I could give that to them.
Cathy Apfel took my email address and phone number. This began my new journey and a great new friendship. I met with the Institute on Disability representatives and set up a workshop with Cathy. That was in March of 2007. Then the IOD invited me to be a keynote speaker at their Autism Summer Institute, along with facilitating the workshops. My topic was Presuming Competence in Friendship. I cried a lot writing that presentation. I did not feel at all competent in making and keeping friends! But myself-reflections were important and radiated hope to many educators and parents attending the Institute.
I gave another Building Social Bridges workshop in October of 2007 and again this past April. I have offered independent teacher workshops. I enrolled at Antioch University New England where I met many wonderful educators, parents, and speech and language professionals. I now have the words and methodologies for better communication.
I met Erin Gruwell of the Freedom Writers’ Foundation and have been to Los Angeles twice now to witness to hope and freedom. Jeff Strully has invited Cathy and myself to the national TASH conference in Nashville. AANE has invited me to present at their major regional conference this coming October. The local parent support group wants me to present a series of topics.
My family is proud of me for finding my voice finally and having the courage to go out into the world and help others. Most of my life my ‘voice’ has been quotes from books, movies, poetry and especially songs. Now I have my own voice, my own words. And if I can help parents and educators understand the truth about autism, then I am changing the world for good.
I offer workshops both through the IOD and as an independent contractor. I will again be a keynote speaker at the IOD’s Autism Summer Institute in August at UNH. I am in the processing of signing a book proposal. I have a blog site and a Web site. I even have business cards and brochures. Such a new adventure!
All of this is possible because of my new friends and mentors, Cathy Apfel and Shelley Viles who is the ASD graduate program director and on the Leadership Board of the AANE New Hampshire chapter. My family is fabulous—an example of love, encouragement, and being truly present.
This is the mission of my life: to spread hope and reframe the dreams. Autism is here. Autism is a gift. Join the journey. Embrace the joy.
Wednesday, February 27, 2008
The Shame of it All
In my presentations, counseling and hobnobbing with persons in the autism universe I often address family feelings of anger, fear, and guilt. I believe that these emotions are useful only in the short term as parents and families regroup to consider a different life path. I believe that young children especially pick up on these dark emotions and internalize them, making it even more difficult to “come out and play” in the broader stratum of relationships. I believe that hope, courage, and steadfast love heals and creates new meaning.
But I recently discovered another emotion, a deeper one that has twisted roots, savage bark, and gnarled, moldy leaves. And I partake in this emotion.
It is shame.
It breaks my heart.
All through elementary school I knew that I was different but all the chattering random children about me didn’t bother me. I did not care about adult opinion. I was in love with Nature, trees, water, sunlight, dust motes, and horses. By middle school that blissful ignorance disappeared, sometimes in trickles, sometimes in thunderous torrents. I became aware of the Others, my peers, and that they had opinions, feelings, and thoughts. This awareness brought a lack of peace and a spirit of competition into my heart and mind. By high school, I wanted to belong, to something, someone, and I am not sure I could articulate whatever belonging meant. I wanted to be with Others. I wanted to have friends.
High school was fun most of the time. I discovered theater, and art, and music. I learned to speed-read books, so that the written word could now keep up with my imagistic brain and the linear language made moving pictures in my imagination. I discovered writing, particularly writing science fiction and fantasy. These talents and skills brought me in contact with Others with whom I could share time and activities. But, with one exception, they did not bring me friends.
So I began a journal of observations, a diary of the Others, filled with stories about behaviors, responses, interactions, and alliances. Images that I captured of facial expressions, tone of voice, garments and accessories filled these notebooks. I kept these journals hidden.
I also filled them with picture, photographs, cut out from popular magazines. At home, I stood in from of the bathroom mirror and tried to make my face look like the photographs. I practiced vocal imitations, especially from television, and I became—well, still am—a decent mimic.
And for nearly 30 years I depended upon the mirror, the observations, the memorizing of film clips, for finding friends and developing meaningful relationships.
Why?
Because I was not good enough for the Others, I hid my immense vocabulary, my extensive reading, and my almost photographic memory. I hid all my skills and talents that brought meaning to my inner life so I could fit into an outer life.
When I discovered autism and that Asperger’s Syndrome explained much of the discrepancies in my life, I was overjoyed! Finally something made sense of the odds and ends of my life, of the social gaffes, the relationship faux pas, and the many jobs lost because I could not interpret the nonverbal signals being sent to me!
Yet I still hid. Oh, I helped the occasional parent that I found hovering in the gluten free/wheat free section of the supermarket. I shared with close friends and family about Asperger’s Syndrome—only to have people scoff at me and declare that I was “just looking for attention with the latest fad.”
Since coming out of the autism closet, I have been happier and found a wonderful direction in my life. Hiding is a Very Big Burden. Trying to “act normal” is a Big Burden. But still there has been an undercurrent of sadness. And I have just realized what that was—it was shame. I was forcing myself to be out in the light, and hoping that somehow I would still find acceptance.
Indeed, I have found much more acceptance than I ever thought possible! I have new friends through the Freedom Writers Foundation that I was blessed to experience last December. I have new friends through my graduate program in autism advocacy. And from the presentations that I do for the Institute on Disability through UNH I have more recognition and even approval for the work I am doing. I feel strongly that sharing my life and my own accommodations with parents and educators will help other youth, so they do not have to hide for decades.
So now I take the next step in This Awfully Big Adventure that is Life: I accept myself.
But I recently discovered another emotion, a deeper one that has twisted roots, savage bark, and gnarled, moldy leaves. And I partake in this emotion.
It is shame.
It breaks my heart.
All through elementary school I knew that I was different but all the chattering random children about me didn’t bother me. I did not care about adult opinion. I was in love with Nature, trees, water, sunlight, dust motes, and horses. By middle school that blissful ignorance disappeared, sometimes in trickles, sometimes in thunderous torrents. I became aware of the Others, my peers, and that they had opinions, feelings, and thoughts. This awareness brought a lack of peace and a spirit of competition into my heart and mind. By high school, I wanted to belong, to something, someone, and I am not sure I could articulate whatever belonging meant. I wanted to be with Others. I wanted to have friends.
High school was fun most of the time. I discovered theater, and art, and music. I learned to speed-read books, so that the written word could now keep up with my imagistic brain and the linear language made moving pictures in my imagination. I discovered writing, particularly writing science fiction and fantasy. These talents and skills brought me in contact with Others with whom I could share time and activities. But, with one exception, they did not bring me friends.
So I began a journal of observations, a diary of the Others, filled with stories about behaviors, responses, interactions, and alliances. Images that I captured of facial expressions, tone of voice, garments and accessories filled these notebooks. I kept these journals hidden.
I also filled them with picture, photographs, cut out from popular magazines. At home, I stood in from of the bathroom mirror and tried to make my face look like the photographs. I practiced vocal imitations, especially from television, and I became—well, still am—a decent mimic.
And for nearly 30 years I depended upon the mirror, the observations, the memorizing of film clips, for finding friends and developing meaningful relationships.
Why?
Because I was not good enough for the Others, I hid my immense vocabulary, my extensive reading, and my almost photographic memory. I hid all my skills and talents that brought meaning to my inner life so I could fit into an outer life.
When I discovered autism and that Asperger’s Syndrome explained much of the discrepancies in my life, I was overjoyed! Finally something made sense of the odds and ends of my life, of the social gaffes, the relationship faux pas, and the many jobs lost because I could not interpret the nonverbal signals being sent to me!
Yet I still hid. Oh, I helped the occasional parent that I found hovering in the gluten free/wheat free section of the supermarket. I shared with close friends and family about Asperger’s Syndrome—only to have people scoff at me and declare that I was “just looking for attention with the latest fad.”
Since coming out of the autism closet, I have been happier and found a wonderful direction in my life. Hiding is a Very Big Burden. Trying to “act normal” is a Big Burden. But still there has been an undercurrent of sadness. And I have just realized what that was—it was shame. I was forcing myself to be out in the light, and hoping that somehow I would still find acceptance.
Indeed, I have found much more acceptance than I ever thought possible! I have new friends through the Freedom Writers Foundation that I was blessed to experience last December. I have new friends through my graduate program in autism advocacy. And from the presentations that I do for the Institute on Disability through UNH I have more recognition and even approval for the work I am doing. I feel strongly that sharing my life and my own accommodations with parents and educators will help other youth, so they do not have to hide for decades.
So now I take the next step in This Awfully Big Adventure that is Life: I accept myself.
Friday, February 8, 2008
Creating Belonging
Dreams are curious creations. Parents often have dreams for their children, and children often have dreams of their own. Since I have lived over half of a century, I have observed that children seldom live the dreams of their parents, but they will more often than not live the morals and values of their parents. Dreams cannot be touched, smelled, tasted, heard of seen but dreams are often so real that these very concrete senses are used to describe what a dream is.
During adolescence, a parent often mourns the loss of their dreams as the youth careens forward through puberty and the licentious and libelous culture in which Americans now find themselves captured.
With a diagnosis of autism, that mourning comes much sooner. Why?
This earlier mourning is actually a gift, a gift in which the parent is invited to become a better person. Sadly, the bond of marital commitment can break under the stress of caring for, advocating for, and grieving for the “lost” child of dreams.
But the dreams still exist; they have only changed shape.
My mom thought I was the perfect baby. I was very quiet. My earliest memories are of dust motes sparkling in the sunbeam coming through the kitchen window in our apartment and the theme songs from the soap operas which my mom watched while ironing, folding clothes, and cooking meals. I didn’t talk until I was three and then I came out with full sentences, so I wasn’t like the colicky chattering daughters whom her sisters-in-law had to raise.
My family didn’t grow up with books, only music on the old vinyl records and soap operas. I have often wondered, given the taciturn silence of my engineering father and the timid quiet of my mother, how I even learned to talk, when I realized I must have learned from the television—from soap operas. How mortifying!
Along with silence, which was loud to me, I was drawn to Nature. This resulted in my adventuring off at a very young age to explore the woodlands. I have an early memory of toddling off behind the apartment towards some woods near a new shopping plaza. Followed by a memory of my mom running after me in abject fear. My poor mom!
This was only the beginning of Nature Adventures, or as I came to call them, Getting Lost on Purpose Adventures.
But I was never lost. I loved the woodlands. Each tree was a personal friend, and the water was especially wonderful. There was a lake, a reservoir, and also an energetic stream easily reached en route to and from elementary school. I saw the forest and stream as my reward for dealing with the inanity of young children babbling and scrabbling and teachers who taught unimportant lines and dots...words.
The idea here is that what is lost for one soul is found for another soul.
It was not until well into young adulthood that I felt the social stigma of being odd. And thus it was that I lost my childhood sense of belonging and of being at peace. I tried to ignore the sparkies and dappled Light, the colors swirling about people that actually prevented me from perceiving their faces.
But I belonged to the Light, to G-d. I don’t belong to another person, another human. And my birth children do not belong to me. After nearly 30 years of seeking some reality amongst the earth people, I relinquish that search and return the peace and beauty of my truth.
Which leads me back to people, to dreams lost, to good intentions but hurtful results.
The most important gift or skill to pass on to a soul living in autism is forgiveness of one’s self. The parent forgives herself for grieving to the point where she cannot see her true child. The educator forgives himself for demanding control, which can only minimally impact the spirit of autism. The therapist forgives herself for presuming deficit and lack of personhood and intelligence. They all ask the person with a different brain for forgiveness.
And the relationship changes. The healing begins. The love can happen.
Birth a new dream. Anticipate change. Love yourself and the beloved will perceive the truth and radiance of that love.
Dream in love, not loss. The colors that I see tell the truth of a person. When I can look into a human’s eyes I look for the same Stars in the night sky, the same sparkles of Light in a sunbeam, the same dappling light flirting through leaves on a summer afternoon.
Join my world won’t you? The dream is about beauty, truth, and love.
During adolescence, a parent often mourns the loss of their dreams as the youth careens forward through puberty and the licentious and libelous culture in which Americans now find themselves captured.
With a diagnosis of autism, that mourning comes much sooner. Why?
This earlier mourning is actually a gift, a gift in which the parent is invited to become a better person. Sadly, the bond of marital commitment can break under the stress of caring for, advocating for, and grieving for the “lost” child of dreams.
But the dreams still exist; they have only changed shape.
My mom thought I was the perfect baby. I was very quiet. My earliest memories are of dust motes sparkling in the sunbeam coming through the kitchen window in our apartment and the theme songs from the soap operas which my mom watched while ironing, folding clothes, and cooking meals. I didn’t talk until I was three and then I came out with full sentences, so I wasn’t like the colicky chattering daughters whom her sisters-in-law had to raise.
My family didn’t grow up with books, only music on the old vinyl records and soap operas. I have often wondered, given the taciturn silence of my engineering father and the timid quiet of my mother, how I even learned to talk, when I realized I must have learned from the television—from soap operas. How mortifying!
Along with silence, which was loud to me, I was drawn to Nature. This resulted in my adventuring off at a very young age to explore the woodlands. I have an early memory of toddling off behind the apartment towards some woods near a new shopping plaza. Followed by a memory of my mom running after me in abject fear. My poor mom!
This was only the beginning of Nature Adventures, or as I came to call them, Getting Lost on Purpose Adventures.
But I was never lost. I loved the woodlands. Each tree was a personal friend, and the water was especially wonderful. There was a lake, a reservoir, and also an energetic stream easily reached en route to and from elementary school. I saw the forest and stream as my reward for dealing with the inanity of young children babbling and scrabbling and teachers who taught unimportant lines and dots...words.
The idea here is that what is lost for one soul is found for another soul.
It was not until well into young adulthood that I felt the social stigma of being odd. And thus it was that I lost my childhood sense of belonging and of being at peace. I tried to ignore the sparkies and dappled Light, the colors swirling about people that actually prevented me from perceiving their faces.
But I belonged to the Light, to G-d. I don’t belong to another person, another human. And my birth children do not belong to me. After nearly 30 years of seeking some reality amongst the earth people, I relinquish that search and return the peace and beauty of my truth.
Which leads me back to people, to dreams lost, to good intentions but hurtful results.
The most important gift or skill to pass on to a soul living in autism is forgiveness of one’s self. The parent forgives herself for grieving to the point where she cannot see her true child. The educator forgives himself for demanding control, which can only minimally impact the spirit of autism. The therapist forgives herself for presuming deficit and lack of personhood and intelligence. They all ask the person with a different brain for forgiveness.
And the relationship changes. The healing begins. The love can happen.
Birth a new dream. Anticipate change. Love yourself and the beloved will perceive the truth and radiance of that love.
Dream in love, not loss. The colors that I see tell the truth of a person. When I can look into a human’s eyes I look for the same Stars in the night sky, the same sparkles of Light in a sunbeam, the same dappling light flirting through leaves on a summer afternoon.
Join my world won’t you? The dream is about beauty, truth, and love.
Sunday, January 20, 2008
Newsflash - January 2018 Washington, DC
The NEW DSM-V has been released as the result of joint research projects with the World Health Organization, the American and British Societies of Medicine and Science, the American and Australian Pediatric Associations and funding through the Global Autism Society (GAS).
Declaring a major victory for the cause of neurodiversity and a return to literacy where words reflect their dictionary meaning, leaders in Autism Restructuring are sharing the new diagnostic criteria. Based upon the Constitution with a focus on equal opportunity, the new DSM-V presents a broad continuum of diagnostic criteria suitable for all neurotypologies. This creates a system through which all people can realize a personalized syndrome and enable the person to apply for and obtain support services.
The new expansive and inclusive format ensures that all persons who wish to pursue positive behavioral supports and interventions will have access to programs at government expense.
The movement to include all neurotypologies for provision of support started when persons living within the autism spectrum began to articulate their talents and demonstrate gifts and abilities that contribute to the Commonweal in extraordinary ways. After succeeding in various disciplines spanning economic frameworks in art, computer technology and theoretical sciences, academics and philosophical sciences, persons within autism began to rally for the rights of neurotypicals to be included in services such as Applied Behavioral Analysis, Sensory Integration Therapy, Social Pragmatics, Positive Behavioral Interventions, Cognitive Behavioral Theory and similar structures for improving neuro-socio-emotional relationships.
Now, after 10 years of study and linguistic analysis, the criteria for the newly defined category offers a diagnosis for all people creating a fair and equal opportunity for all neuotypologies to attain unique and meaningful positions in community and world service.
Lobbying successfully for the removal of the word ‘disorder’ within the DSM led GAS to promote support services for all persons regardless of language ability and cognitive approach. The new entry for the DSM-V includes character attributes such as:
1. presumption addiction (using Theory of Mind to misunderstand the desires and intents of other persons)
2. social superiority syndrome (perseverating belief that one type of relationship development is always preferable)
3. morphological modification compulsion (the use of well-defined words in ill-conceived ways resulting in confusion, argumentation, and the breakdown of relationships)
4. inexact etiological processing (determined and constant misuse of established philosophical or scientific paradigms in order to justify a belief system whether or not it is accurate)
5. PDD-NNS: Pervasive Developmental disorder-Not needing specification (a holistic approach to finding a diagnostic niche for any person who feels a need to BELONG using any psycho-social paradigm defined since 1968)
The Global Autism Society has over 10,000 Websites dedicated to explaining and defining the new criteria for autism inclusion. Cate Atonic, president of the society, states: “Our deep empathy and understanding of the sense of being lost urged us forward to reach out to our NT brothers and sisters so that we can all live a rich inner life while pursuing mundane contributions to the consumerist economy of the first world industrialized countries. It is our sincere hope that as the industrialization of grasslands, forests, oceans and Souls deteriorates, our neurotypical friends will revert to a simpler life and can find joy in the solitude of the meadow as shepherds, beauty in the skylines of mountains in the pursuit of art and music, truth in the mathematical lines and geometrical patterns of stars and waves.”
Persons interested in studying this new diagnosis can Google “Neurotypical Spectrum Disorder.”
With love for Cathy and Judi
Tuesday, January 1, 2008
A Christmas Gift from my Daughter
M is the only daughter and she has four brothers. She is also the only granddaughter with 2 male cousins. This is quite a "burden" for her. At 18, she is nearly grown up. She is a very different soul than myself and often helps me to understand the social rules and intricacies that swirl about me. She is beautiful. And she does share one trait with me--she writes. And the posting today for the beginning of my new life is one of her ChristMass gifts to me: A poem.
THE LAST STAIRCASE TO THE MOON
That staircase, wound round and round
The biggest and tallest mountain
It was made of steel, fire, water and air
And it was hard to tread, that stair;
But many a person was placed on this route
And whether they liked it or not was mute.
Those who climbed had soulful eyes
And didn’t understand what it meant when someone dies;
Knowledge was their power, and wisdom their element;
Carefully they stepped one stair at a time, one foot at a time
implemented,
Reaching towards the stars they continue on their trek
Dsylexia making them at eveyone’s call and beck.
Social congruities muddle their perceptions
And this makes them terrible at deceptions.
So Truthfully they set out, starting at the beginning
With the voices of those they love, in their ears ringing;
The stairs bend and meld to the shape of these travelers;
They were born for the water like mariners
And raised for fire like those who temper steel,
Fed by mother earth, to understand how to heal.
They are the people sent to show us a better way
As we all slip into barbarism; they guide us today.
They lead us to the moon, lead us to real dreams
Just like what they were shaped by—moon beams.
THE LAST STAIRCASE TO THE MOON
That staircase, wound round and round
The biggest and tallest mountain
It was made of steel, fire, water and air
And it was hard to tread, that stair;
But many a person was placed on this route
And whether they liked it or not was mute.
Those who climbed had soulful eyes
And didn’t understand what it meant when someone dies;
Knowledge was their power, and wisdom their element;
Carefully they stepped one stair at a time, one foot at a time
implemented,
Reaching towards the stars they continue on their trek
Dsylexia making them at eveyone’s call and beck.
Social congruities muddle their perceptions
And this makes them terrible at deceptions.
So Truthfully they set out, starting at the beginning
With the voices of those they love, in their ears ringing;
The stairs bend and meld to the shape of these travelers;
They were born for the water like mariners
And raised for fire like those who temper steel,
Fed by mother earth, to understand how to heal.
They are the people sent to show us a better way
As we all slip into barbarism; they guide us today.
They lead us to the moon, lead us to real dreams
Just like what they were shaped by—moon beams.
Thank you, Princess of Fire.
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