Autism Speaks walked today. I decided not to protest. I had other things to do. I also felt that there were better uses of my time and energy. Something about the pitiful ratio of people who talk big online to those who come out weighed down my spirits. I sat this one out knowing that there were at least flyers. Those light posts were private property, so I will not say who put them up. Maybe someone will see the pleas for reason. Maybe someone will care. It was probably more effective than shouting at them. I am resisting the urge to go looking for an argument with the organizers later. Last year, I managed to find one at Target.
Instead, I am trying to muster the energy to do something useful: someone at the state wants an autistic perspective on the insurance-coverage-for-ABA bill they want passed. I should write it. Today or tomorrow, I will. It might be tomorrow. I am tired from visiting one friend last night, helping another move the night before. My friend-group’s fleet leaves something to be desired. My Buick is our only vehicle big enough to be useful for moving. It gives me hope that the state is soliciting autistic opinions. There more sense in Georgia than I realized. I hope that, between disability advocates and regulation-hating conservatives, we can prevent ‘quiet hands.’ I would love to see this turn into a discussion that might ultimately lead to a better bill. There are services families could use. I like to see Georgia taking an interest in autism and disability issues. However, I worry that the existing legislation would incentivize ABA, create a market for more of it, and cause a lot of the most inexperienced, ham-handed, child-traumatizing variety to spring up. An abrupt expansion of demand for ABA is a scary thought. Tonight or in the morning, I will write that up and finish my IRB papers. These are small, good things I can do. After that, I should sleep.
Click the link. It is happy, a textbook example of a parent getting it right. If you are a parent and cannot come to terms with the child you have, you are in the wrong. If you are on the fence, imagine your child as an adult. If they are not currently communicative in words of some form, imagine that changing. It may well. What will you feel if your child asks why you loved the imaginary, ‘fixed’ version more than the real thing? What if your kid turns to you, makes rare, unbroken eye contact, and asks why you hated them enough to try replacing them with a different person? Could you live with that?
I got my first good look at Atlanta taking the long way into Decatur, 75/85 to I-20, Moreland, and Dekalb through interesting parts of town. That was one of my worst days, but those roads are where my life happens, now. Downtown, as seen on a spring night from the window of a car around the cultural speed limit, looks like home. I see it at least once a week. I hate the way they light it up blue. The next time I make the trip home from Douglass, those insipid floodlights will be gone. They were always jarring.
The skyline was an unpleasant reminder of times I would rather forget, but it never ruined my night. They were distant. The radio, the cushy, leather seats, the engine’s hearty rumble, the beautiful tuba were more real. So was the rehearsal that prefaces the drive. I like musicians, especially tuba players, because no one cares what I am. The band has substance. The section is alive. The lights had ninety seconds. People who care more about what I do and choose to be than what I was born had two hours. These things were before blue, or any, light bulbs. The needs for community, expression run marrow deep in humankind. Bread and roses, people of goodwill, and implausible tuba sections will outlast the pathetic display. In the mean time, I am safe.
What really bothered me about the lights is that not everyone is. They represent marginalization on a long spectrum. At one end, in my life, the discomfort is an inaudible hiss if the radio is on. It usually is. At the other, there are murders and apologists. Between, there are dour group homes, people who are about to age out of public school without a clear next step, kids whose parents are trying to ‘recover’ them. I spoke to one such mother. in April. She wanted to know how I got well. I said I was never sick, suggested that it was possible her son would grow up to feel the same way. The lights represent a narrative that we are suffering, waiting at the doorway of personhood for someone to let us in. It is a compelling story, wise researchers and brave, devoted relatives saving the helpless and ill.
Inclusion is an inherently harder sell. There are no heroes, just people quietly making room. The medical model is the stuff of bestsellers. The social model is the lady down the street hiring a guy with an intellectual disability to stock shelves in her store. The lights on I-20, the DSM V controversy, and articles like this remind me that society is wrestling with the question of normalcy: what does it mean to be sick vs. well, broken vs. whole, productive vs. useless? I presume competence. Anything else leaves precious human potential untapped. I am not going to argue with someone who feels healthy, whole, content as they are. I am not going to decide what kinds of people to exclude from the human community. I do not presume to be wise enough to know what innate ways of being should be cured. I know I want mine left alone. Blue lights were a reminder that not everyone agrees. There are people who think I, by definition, cannot answer the question.
These individuals annoy me, but there is nothing they can do to me. My competence at things society values, relatively good executive functioning, car title, driver’s license, bank account, voter registration, friends, contacts, and acquaintances cement my status as someone who can decide things. No one is going to do anything to me. I had to earn acknowledgement as fully human, but I got it. Were it otherwise, I doubt the lights would have been mildly unpleasant. They might have been frightening.
Hello everyone! This is my little sister, Emily. Emily looks like a normal girl, doesn’t she? Sadly, my sister was diagnosed with autism at the age of two. For those of you who do not know what autism is, I will explain. Autism is a mental…
Actually, we can form relationships. That is the most offensive thing you said. Where did you look it up? Do you have any research to support that outrageous claim? I have known and loved one of my best friends for over ten years. That is a relationship. My parents, one autistic, have been together over twenty-five years with all the beauty, flaws, depth, and commitment that entails. Are you going to tell me that a marriage that survived a University of Chicago Ph. D. program and two children is fake?
Before you argue that you meant really seriously autistic people, not your dad with his marriage and career and advanced degree, let me tell you something: I discovered my diagnosis in high school and immediately began volunteering in two self-contained classes that were exclusively for autistics. They were all diagnosed LFA. I made friends with two of them. One was sort of, sometimes, non-traditionally verbal. He will always need supports in daily life. We hung out for a couple of years. He attended my sixteenth birthday party. Between my junior and senior years, I moved to another state. I went to visit my remaining schoolmates over a year later, after my class had graduated. He did not catch up with me in the same way that other people did, but he knew who I was. He was very pleased to see me. That is friendship, relationship between two autistics. He likes castles. I got to go to the Czech Republic the summer after that and sent him a postcard with a picture for each one I visited. Remembering what a friend likes, including him in it as best I could without the money to buy him a plane ticket, is what relationship means.
There was another kid in the self-contained class who smiled, high-fived, and used his ten words whenever he saw me. He did not do that for everyone. He was not well-spoken but made up for it by being stunningly articulate on keyboard. He is a brilliant jazz pianist.* Not everyone knew that. He never felt like showing off in front of his teacher. He had to particularly like someone to stop banging out tunes the music therapist color-coded on that cheap, little keyboard. His way of having relationships is bestowing this remarkable gift. It is probably the only thing in his life that he controls. He shows preference for some people, and affection, by sharing it. On my end, relationship, or the remnants of it, is regret that I never managed to get contact information for him. He has turned twenty-one and left the school. I think of him often. When I do, I worry. I pray that someone else has discovered how brilliant he is. That might save his life. He is a disabled, almost nonverbal man of color from a working class background. He is not as charming and handsome as the first guy I described. Terrible things happen to people like him. I worry less about the first young man. It is not easy for him to communicate over distances, but he has a great family. He has siblings who will never let anyone hurt him.
I am like your sister in some important ways. I care about her without even knowing her. I am devoting my life to improving her prospects. I am glad to know you care. That is good news for her chances at a decent life. I have to tell you that someone is misleading you. She can form relationships. Her way of doing that may lack words, but she knows you. If you are the one taking the picture, she clearly adores you. Look at that smile. The person behind the camera is special to her. Have enough respect for her to acknowledge the obvious. In the future, do not believe people who tell you things that contradict realities staring you in the face. At best, they are ignorant. At worst, they think you and your money might be easily parted. This poor girl is probably wondering why no one understands that she can love them. That is the saddest thing I have seen since I saw a story about another autistic kid killed by her relatives earlier today.
*I refuse to call him a savant. Disabled people can be good at things, too. There does not need to be a special word for that. As a musician, I have too much respect for him to treat talent I can only imagine having as a symptom.
April is Autism Awareness Month. Autistics are trying to reclaim it because making it go away seems impossible at this point. If you care about why April is contentious and we get angry with you sometimes, this is a great month to learn about ableism and good vs. bad awareness.
Ableism is real. Ignoring it makes you part of the problem, the inert mass of apathetic people who slow down structural change that would help your children. It has almost certainly entered your home. It is like a termite infestation in that it can go unnoticed until the damage wrecks havoc on family life. Like a termite infestation, there are things you can do about it. The faster you act, the better. Ignoring it maximizes the harm. Spotting it is the first thing to learn.
Ableism is an oppression. Oppressions are systematic disadvantages attached to certain identities. Ableism is the one connected to disability. It has some fundamental assumptions that usually look something like this:
If you are not familiar with the dangers of assumptions, click here. You will see these assumptions throughout April awareness events. When you see people talking or writing about autism and none of them are autistic, you have seen ableism. When you see us described, across the board, as tragedies or victims, it reared its ugly head. I encourage you to play bingo with this list for a month, especially with yourself. This is not to say that you should stop recognizing your child’s disability. Deal with your child with all their strengths and weaknesses, including those associated with their disability, in mind. When you catch yourself being ableist, apologize. Rethink your assumptions. Try to mitigate the damage. Make it right, especially when you accidentally hurt your child. Avoiding ableism teaches your child to feel entitled to their basic, human rights. It helps them grow up with self-esteem. It lays a strong foundation for your efforts to teach self-advocacy. Recognizing one’s prejudice is difficult. So is much of child-rearing. This is one more task to undertake out of parental love.
*Not everyone wants to educate you. I do but have a student’s temporal limits. Google the models of disability yourself so that I have time to handle more complex things.
This week, I got an invitation to play at a school and meet students. They want their kids on the spectrum exposed to autistic adults. Meeting such children is great but slightly fraught. Do they have expectations? If so, what are they? Do I measure up? Did well-meaning adults drag them into an encounter they may not want yet? Do they have it better than I did at the same age? Are they more sheltered than I was? Do they feel safe?
I hope so. I came to the realization that I was different and discovered oppression around age three. The oldest ones, young teens, need to know what they are up against. I hope the kindergarteners do not. Nurtured through their early years by adults who see nothing broken about them, will they be spared the PTSD etc. that plague my cohort, or will dealing with the real world be all the more jarring? I hope they will be happier, less damaged, less angry than many of us. I hope they will grow up feeling entitled to all the opportunity their allistic peers enjoy.
I thought hard about a brief set list for the occasion, came to the conclusion that two things have to be on it:
This suits the tuba. I like to play it fast for kids. It sounds impressive enough to get them excited with improvised, jazz- and swing-style curlicues. The lyrics, not that anyone will hear them, are clean. They are dated in that “man” stands in for person, but the message is positive. I hope they grow up feeling like all its ‘wants’ are within reach.
I also have to play this:
I respond to requests to help parents out of concern for autistic children. I trust some, but, taking them at their word that a small percentage will harm kids without help, treating requests for support as life-and-death matters logically follows. I never turn them down. However, I deal with children directly for different reasons, in someone else’s memory. Hundreds of miles away, before most of the kids I will meet were born, I listened to that song with an autistic adult who took an interest in me in a car that smelled like Camel cigarettes. No one outside of my immediate circles needs that name.* I never refuse a request to meet children because I felt something rare in that car: safe. Before I had a word for what I was, I suspected that there was at least one more. I thought I might not be alone. I cram kids into my schedule because they deserve to be sure of what I half-believed. I got by on that hope for years. There is no telling what they can do if they know.
*I have shared most of my history with this cause. The stakes are too high for anyone to hold potentially-useful story back. That name is one of the few things I hold too sacred for the grubby hands of factions harassing each other online and IRL. Someday, if I make money and other surviving loved ones approve, there will be a fitting tribute. Until then, rare silence in the information age is the best I can do.
I live with a son who is mentally ill. I love my son. But he terrifies me.
A few weeks ago, Michael pulled a knife and threatened to kill me and then himself after I asked him to return his overdue library books. His 7 and 9 year old siblings knew the safety plan — they ran to the car and locked the doors before I even asked them to. I managed to get the knife from Michael, then methodically collected all the sharp objects in the house into a single Tupperware container that now travels with me. Through it all, he continued to scream insults at me and threaten to kill or hurt me.
If so, I am sorry for your suffering. However, she does not know this child is autistic. She did disclose his problems to the entire world under her full name. There is a picture of him. Even if his condition improves, how will he live in society now? He is thirteen. His reputation is ruined. People who have seen the rest of her blog are questioning her fitness as a parent in general because of awful things she said about this boy and her typical children. Whatever kind of parent she otherwise is, just publicly posting this article is an act of abuse. She may have wantonly destroyed her son’s life. Does that bother you, or is a supposedly empathetic neurotypical immune from caring about people like this child, whatever his problem is?
This is an adult forced out of her home, away from friends, by Medicaid bureaucracy.
Yesterday, Lynne Soraya imagined what her life would have been if she had been diagnosed early. She wrote an accurate portrayal. At six, experts told my parents that my autism was serious. It would get worse. I was a bright, quirky, happy child. I talked incessantly from eighteen months. I was not more awkward than most people at the University of Chicago, where I was born and had lived until the previous year. No one explained the concept of a spectrum to my mother. No one countered the stereotype of the child rocking in a corner. They prognosticated poor marriage prospects and isolation. They said I might never have friends, though I did. Mom half-believed the diagnosis. She was afraid.
Suddenly, imaginary friends were threats to any hope of real ones. Eye contact was crucial. Sensory issues that had been accommodated because no one wanted me screaming over socks demanded occupational therapy. Every outing was an opportunity to correct my movements and posture. Parental attention had to teach social skills. This wasautism. Anything else would have been negligent. The stakes were my life, future, normality.
Meanwhile, I wondered why my parents were disappointed. Even the way I played was wrong. Mom, who had insisted that there were many right ways to do almost anything, criticized my gait. Had I always walked badly? If not, why was I suddenly inadequate. Mom made two of my favorite toys, plastic aliens from Chicago’s Science and Surplus, odious by using them in social stories. I knew they were designed to be ‘friends.’ They were when I played with them, telling myself stories about their exploits in the outer reaches of the solar system. Mom sent them to school. That seemed all wrong for aliens. Besides, it was as transparently educational as children’s public television
Eventually, it became clear that my father was the source of these traits. He is thirty years older than me, undiagnosed, successful, content. My autism, like his, is advantageous unless ableism is in play. The downside is that it makes institutional living painful. College will end soon. Later, I will plan to age in place sans nursing home. Otherwise, things are going well. My life works because I run it. I want more people with disabilities to have that opportunity. When we are allowed to choose, experts make the decisions. We know our needs best.
Neither autism nor ableism are routine, pressing problems. My worries are banal, the cost of law school, the price of gas, papers, performances, valve oil, groceries, traffic. The major struggle I do not share with allistic peers is a dark worldview. I grew up around adults who thought giving me a decent life meant changing me. Alone, I defended my integrity of mind, self, against everyone. My parents, teachers, peers were threats. I trusted practically no one. It was the sensible approach. Intellectually, I knew I was safe at eighteen. There is little anyone can make me do. Viscerally, it will take time. Fallout from Soraya’s “Nevers” is worse than autism. It was preventable.
When I express an opinion on autism, parents complain that I am telling them how to raise their children. It may be autism or my aspiration to practice law, but I like precision. I take issue with the idea that we tell others what to do with their offspring because it is patently false.
We never tell you what religion, or lack thereof, is right. We do not comment on your house rules for intoxicants. We never tell you how many minutes are appropriate for a preschooler’s first timeout. We are not interested in arguing over rewards and punishments for grades. Most neurodiversity people want your second grader’s homework, your seventh grader’s allowance, and your ninth grader’s dating to remain your problem. The only autistics who want to talk parenting are parents. The rest of us, like your coworkers, feel our eyes glazing over by the tenth baby picture.
What does interest us is the care of children like ourselves in areas of similarity. I will not try to dictate your school, diet, or extracurricular choices for a child who happens to be on the spectrum. That is your job. Unless you ask my opinion, it is not my place to voice one. Things change when autism is the central issue.
The cure approach to autism is ableism. It is the falsehood that a disabled life is inherently less good, less worthwhile. It is branding your child’s personality a disease in need of a remedy. If you had been raised from earliest awareness to believe that irremovable sections of your neural wiring, affecting your personality both by existing and shaping your experience, were pathological, could you like yourself? Could you respect yourself if you had been told you had a bad self? If I see someone mistreating a child, I try to stop it. My childhood left a soft spot in my heart for kids in trouble. Whether you know it or not, teaching your child to hate parts of the bedrock of their personalities is maltreatment.
My cohort of autistics is damaged because we lived that way. I know too many people who will carry the physical or psychological scars of systems intended to ‘fix’ us for a lifetime. We want to prevent that from happening to your child. It takes conscious effort to learn self-respect, to stop considering our thoughts, lives, and experiences diseased. Many of us have strained relationships with our families of origin. It is hard for some of us to trust anyone after suffering at the hands of adults who were supposed to protect and nurture us. By trying to change us, they unintentionally tormented us for years. We are still autistic.
The cure mentality harms us. It does not achieve the goal you already need to change. I am not telling you how to raise your child when I ask you to let it go. I am insisting that you stop hurting it.