Autism Acceptance Day, 2014: Liking autistics exactly the way they are
I grew up watching Mr. Rogers. I watched as a young child and continued watching well into adulthood, but I think the time he meant the most to me was during junior high. I would come home from school and turn on the television in time to hear Mr. Rogers tell me, and children everywhere, that “people can like you exactly the way you are.” Those were the days when only time anyone my age spoke to me was in ridicule, and the solution most adults proposed was for me to dress, talk, act and think more like other people my age. I knew my parents loved me, but everywhere else the message was clearly that I was too weird to be liked. It gave me hope that Mr. Rogers message would get through and that, some day, other people might also like me exactly the way I was.
What I like about my job now is caring for autistic children. Some people go into a branch of medicine because they want to cure or treat whatever affects people in that branch of medicine. So the cardiologists want to prevent or cure or treat heart disease. The neurologists want to prevent or cure or treat seizures. And me? I went into developmental pediatrics because I like autistic children - exactly the way they are.
It can sometimes be challenging to reconcile the model of medical care in which I work with my love and respect for my patients. I do my best. Sometimes I know I dismay my autistic community radical advocates by supporting the use of medication, speech and ABA therapy in some circumstances. Often I know I shock my medical colleagues by rejecting talk of a cure and of any approach to make children appear less autistic. Sometimes I consider Walt Whitman instead of Mr. Rogers. “Do I contradict myself? Very well then I contradict myself, (I am large, I contain multitudes.)”
But I don’t think I actually contradict myself. I do care for my autistic (and other) patients exactly the way they are. And I sometimes advocate treatments through medical channels to help them be the best autistic people they can be. Sometimes the strawman (strawperson?) argument is made that promoting autism acceptance is akin to promoting no care, interventions, treatment, education or therapies, ever.
The thing is, liking (or loving) someone just the way they are does not mean we should fail to support growth and development. Most people seem to understand this when disability is not on the table. We can love a 9 month old baby as they are and recognize that throwing food off the highchair tray is a typical developmental stage, while also expecting the baby to grow up to be a person who does not throw food. We can love a 4 year old child as they are and recognize that grabbing toys is a typical developmental stage, while also working with the child to learn how to share toys and grow up to be a person who does not grab. We can love a teenager as they are and recognize shrugs of communication as a typical developmental stage while also working with the teen on how to communicate during a college interview.
And that’s how I can like my autistic patients exactly as they are, and also recommend certain treatments and therapies to promote health and growth.
We talk about intent not being magical, but the truth is that intent can matter. I do not support speech and language therapy with the intent of creating neurotypical-appearing verbal speech. I absolutely support speech and language therapy with the intent of helping a person learn ways to communicate as well as possible with as many communication partners as possible, and knowing this will mean different things for different people. And I feel this goal aligns with accepting autistic people as they are.
I am more cautious about ABA because of the clear history of harm. I completely reject ABA to eliminate “autistic behaviors.” I do support the idea of collecting good data on abilities and progress, of teaching skills to target current abilities and needs, of breaking larger tasks into manageable steps. And I do believe it is possible to develop ABA programs to teach skills and reduce unsafe situations while accepting autistic people the way they are.
Then there’s medication. Medication does not remove autism from a person, nor should it be expected to. Nor would I want it to. So why do I prescribe medication sometimes? To help kids stay safe. To help kids be able to focus on learning. To help kids be less anxious. Sometimes the kids themselves tell me they can’t pay attention in class or that they are feeling so sad or anxious they would like help to feel better. Other times, we are making our best guess based on observation, after ruling out underlying medical causes, and maximizing environmental supports. Somewhat fewer than half the children with autism I care for take medication for mood or behavior, and only a small percentage take the atypical antipsychotics with the most serious potential side effects. If the medication doesn’t help, we change or stop it. I have seen many children tell me, through words or actions, that they feel better, and are helped to grow into their wonderful future autistic selves.
I enjoy my autistic patients as they are, as autistics. I help them build repetitive block castles and knock them down. I bring in toy horses and listen to scripts of My Little Pony episodes. I honor requests for crayons, books or a turn with the stethoscope made with words, signs, gestures, pointing or opening the appropriate drawer. I have great conversations about dinosaurs and Veggie Tales and the Big Bad Wolf and robotics and trains. I wave off parental requests for eye-contact. I trade Harry Potter trivia and learn new things about sharks. I remove magazines from the room if they are too tempting to chew, so that we don’t have to spend the visit constantly removing glossy paper from mouths for safety. I have examined pictures of Wiggles and Samantha dolls with my otoscope, and checked reflexes in one arm at a time as the other was engrossed in hand-held games. I have found shiny things for a birthday prize.
I write the most autistic reports. I recommend taking eye-contact and forced socialization goals out of IEPs. I suggested a family discuss emotions over writing or e-mail rather than verbally. I recommend “down-time.” I point out that a fun family trip may not be fun for the autistic. I recommend teaching social mores as information, not as prescribed behavior. I recommend websites and books written by autistics. I quote autistics.
I believe in what I do as (an autistic) developmental pediatrician, which can include recommending therapies and prescribing medication. I believe in helping autistic children grow up to be the best autistic people they can be. I think I provide better care because I center autistic perspectives, even when I do suggest more traditionally medical approaches.
And when I look over my schedule, and see the names of my autistic patients, I smile as I load up toy cars, extra crayons, chewable rings and copies of Loud Hands, along with my medical notes. Because the joy of my work is liking my autistic patients, exactly the way they are. And I hope that they will go through junior high and into life beyond, knowing that people truly can like them, exactly the way they are.
What I like about my job now is caring for autistic children. Some people go into a branch of medicine because they want to cure or treat whatever affects people in that branch of medicine. So the cardiologists want to prevent or cure or treat heart disease. The neurologists want to prevent or cure or treat seizures. And me? I went into developmental pediatrics because I like autistic children - exactly the way they are.
It can sometimes be challenging to reconcile the model of medical care in which I work with my love and respect for my patients. I do my best. Sometimes I know I dismay my autistic community radical advocates by supporting the use of medication, speech and ABA therapy in some circumstances. Often I know I shock my medical colleagues by rejecting talk of a cure and of any approach to make children appear less autistic. Sometimes I consider Walt Whitman instead of Mr. Rogers. “Do I contradict myself? Very well then I contradict myself, (I am large, I contain multitudes.)”
But I don’t think I actually contradict myself. I do care for my autistic (and other) patients exactly the way they are. And I sometimes advocate treatments through medical channels to help them be the best autistic people they can be. Sometimes the strawman (strawperson?) argument is made that promoting autism acceptance is akin to promoting no care, interventions, treatment, education or therapies, ever.
The thing is, liking (or loving) someone just the way they are does not mean we should fail to support growth and development. Most people seem to understand this when disability is not on the table. We can love a 9 month old baby as they are and recognize that throwing food off the highchair tray is a typical developmental stage, while also expecting the baby to grow up to be a person who does not throw food. We can love a 4 year old child as they are and recognize that grabbing toys is a typical developmental stage, while also working with the child to learn how to share toys and grow up to be a person who does not grab. We can love a teenager as they are and recognize shrugs of communication as a typical developmental stage while also working with the teen on how to communicate during a college interview.
And that’s how I can like my autistic patients exactly as they are, and also recommend certain treatments and therapies to promote health and growth.
We talk about intent not being magical, but the truth is that intent can matter. I do not support speech and language therapy with the intent of creating neurotypical-appearing verbal speech. I absolutely support speech and language therapy with the intent of helping a person learn ways to communicate as well as possible with as many communication partners as possible, and knowing this will mean different things for different people. And I feel this goal aligns with accepting autistic people as they are.
I am more cautious about ABA because of the clear history of harm. I completely reject ABA to eliminate “autistic behaviors.” I do support the idea of collecting good data on abilities and progress, of teaching skills to target current abilities and needs, of breaking larger tasks into manageable steps. And I do believe it is possible to develop ABA programs to teach skills and reduce unsafe situations while accepting autistic people the way they are.
Then there’s medication. Medication does not remove autism from a person, nor should it be expected to. Nor would I want it to. So why do I prescribe medication sometimes? To help kids stay safe. To help kids be able to focus on learning. To help kids be less anxious. Sometimes the kids themselves tell me they can’t pay attention in class or that they are feeling so sad or anxious they would like help to feel better. Other times, we are making our best guess based on observation, after ruling out underlying medical causes, and maximizing environmental supports. Somewhat fewer than half the children with autism I care for take medication for mood or behavior, and only a small percentage take the atypical antipsychotics with the most serious potential side effects. If the medication doesn’t help, we change or stop it. I have seen many children tell me, through words or actions, that they feel better, and are helped to grow into their wonderful future autistic selves.
I enjoy my autistic patients as they are, as autistics. I help them build repetitive block castles and knock them down. I bring in toy horses and listen to scripts of My Little Pony episodes. I honor requests for crayons, books or a turn with the stethoscope made with words, signs, gestures, pointing or opening the appropriate drawer. I have great conversations about dinosaurs and Veggie Tales and the Big Bad Wolf and robotics and trains. I wave off parental requests for eye-contact. I trade Harry Potter trivia and learn new things about sharks. I remove magazines from the room if they are too tempting to chew, so that we don’t have to spend the visit constantly removing glossy paper from mouths for safety. I have examined pictures of Wiggles and Samantha dolls with my otoscope, and checked reflexes in one arm at a time as the other was engrossed in hand-held games. I have found shiny things for a birthday prize.
I write the most autistic reports. I recommend taking eye-contact and forced socialization goals out of IEPs. I suggested a family discuss emotions over writing or e-mail rather than verbally. I recommend “down-time.” I point out that a fun family trip may not be fun for the autistic. I recommend teaching social mores as information, not as prescribed behavior. I recommend websites and books written by autistics. I quote autistics.
I believe in what I do as (an autistic) developmental pediatrician, which can include recommending therapies and prescribing medication. I believe in helping autistic children grow up to be the best autistic people they can be. I think I provide better care because I center autistic perspectives, even when I do suggest more traditionally medical approaches.
And when I look over my schedule, and see the names of my autistic patients, I smile as I load up toy cars, extra crayons, chewable rings and copies of Loud Hands, along with my medical notes. Because the joy of my work is liking my autistic patients, exactly the way they are. And I hope that they will go through junior high and into life beyond, knowing that people truly can like them, exactly the way they are.