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 dragged myself out of bed, got presentable this morning. In the student center, I remembered that this day merited good clothes. Before I got coffee, I walked back to my room to exchange a venerable t-shirt for something I would wear to class or church. The boy was coming. Ibuprofen had no effect on my headache. I had hit a level of exhaustion irreparable by caffeine.* I did my best to ignore it. Come on, I thought. This is important. An autistic kid was coming to meet me. I was more tense and excited than when President Obama came to town. His mother said I was one of the first adults on the spectrum he would encounter. I hoped I would live up to his expectations.
He had gotten into the dining hall’s brownies and soda. He was more interested in running than anything else. I enjoy children but would write spending time with them off as luxury without a sense of ‘should.’ I feel obliged to protect them as much as possible from the lack-of-childhood I had. They will not grow up feeling like lone freaks. If they want to find the community, they will have help. Someone will be there to warn them about Wrong Planet. If they need advice, someone will try.
This goes back to the larger ‘should’ of visibility. This is why I always meet with parents, join panels, show up when someone asks. For me, being openly autistic was relatively low-risk. Coming out is a ‘should’ for everyone who can. Otherwise, how will these children, and their parents, find us? Real names are best. They show courage, link our stories to real lives, and make it hard for people to hang on to their prejudice in light of revelations about members of their own communities. Such openness is ideal, but making noise under any handle helps. It lets us find each other, build institutions. It challenges the prevailing narrative of who we are. Autistic people should be seen, heard, present to the young. We should craft a better story of ourselves and smooth the road.
*For reasons that cannot be discussed out of respect for others’ privacy, sleep has not been routine this month.
I decided things had to change. I still have to figure out how. Less, not no, neurodiversity seems to be in the cards. There are too many wild edges, too few rules about acceptable behavior. I compromised for a while but saw more than I could accept. I took a few days to grieve and clear my head. The sense of missed possibilities due to one small barrier of conscience is hard, but I need a code that calls some things unacceptable like the next beat of my heart. Solid ground is hard to find this world. I did, will, need things to fill the hours. I have a new venture in the works. If it pans out, I can travel and volunteer at a local, inclusive center for people with and without intellectual disabilities all summer instead of working retail. Maybe I can make an internship of it. For now, I will teach a friend to drive.
If I can find the right venue, I might write accessible explanations of important things for people with intellectual disabilities and others. I have toyed with the idea before. My conflict with The University of Chicago Hospital made it seem urgent. Apparently, the witness signature was about verifying my identity, not treating me as incompetent. No one would tell me that until I shouted my way to their lawyer. People with less understanding of their rights, more blue collar sensibilities about authority figures, or without the ounce of entitlement that comes of growing up white in this society might have left empty-handed. A Southerner, less willing to tear every human obstacle a certain new orifice, would have struggled. Delays only ended when I stopped trying to be nice. People, especially segments of the disability community, need these things in clear language.
I can be a good board member. This year, I will run a self-advocacy committee. That starts with creating one. I will do small, ordinary good, play tuba, and ignore the social justice crowd as much as possible. I may try to go to church more. Most of all, I will study hard, become the best lawyer I can, and advocate for children in the public schools. The work will be hard, quiet, worthwhile.
That may be the best fit for me. The only label or title that has stuck is ‘tuba player.’ I am not a boiler room person so much as the furnace. I always find uses. I was born for subtle-yet-critical bass lines, long days, heavy loads. Anything could happen to my blog. I might shut it down, leave better posts as a finished resource, or continue. It may or may not fit into what my life will become. There is no reason to rush the decision. I can make all these choices deliberately, looking for the best route to my goals. If options do not exist in satisfying quantities, I will devise more.
As soon as the holiday passes and offices reopen, an epic struggle with the University of Chicago phone relay will resume. I want to know more about how I was diagnosed. I want to see the notes my parents never did. Finding who to call and getting through is cumbersome as always, but something is worse than the standard difficulties of dealing with large institutions this time. They want a witness signature to release information related to disability or mental illness. This, explained with a neat double asterisk, is separate from the guardian signature blank on the form. Treating me as incompetent solely on the basis of disability is legally questionable, but lawyers cost. After two weeks of calls, the single helpful, well-mannered secretary, whose accent says she was born down south, let me know that I wanted hospital’s Psychology Department, not Medical Records.
That has me concerned. Most people in ‘helping’ fields are nuisances if they know my disability label, but mental health types are a special brand of nightmare. I have little respect for people who hate everyone on the opposite end of their axis of oppression, but I almost make an exception here. One in ten is good. The other nine are a plague that ranges in virulence from mild othering to open prejudice. Catherine Lord had a hand in my diagnosis. I will argue with the nine, not the one. The presumption will be that autistics, myself included, cannot handle our affairs. I will advocate for myself. I will make it easiest for them to give me what I want. I will have my records. There will be no witness signature. As I prepare for round two of a long, unpleasant process, something has occurred to me:
I did not need a witness at the car dealership. I had an easier, less demeaning time buying over two tons of potential death than getting medical records. Renewing my license is similarly easy. So is course registration. No one is going to question my capacity to make decisions when I take out law school loans. The commonality is that all of these things could hurt me more than semi-legible photocopies. Unless there are surprises in those files, the conclusion is public knowledge. Even if I cared about the secrecy of the contents, they are safer than a car. Mainstream society rarely bothers me. I fend for myself without asking more of it than others do. My abilities at least factor in how it treats me. My problem with it is its tendency to marginalize those who need more. However, most people in helping professions, especially mental health, are different. They call autistics black and white thinkers without recognizing their own absolutes of normality and pathology. To whoever designed the form, and many whose patients use it, competence and incapacity are stark categories. One label is enough to push me over the line.
Right… I do believe I’m going to start using this thing more. I’ve had a few people poke at me to do so lately, so here I am… again. I have a lot to say about some things and I have not been able to blog or share myself in any real capacity in quite a long time, due to a certain situation. That situation is no longer one I am allowing to have power over me (thanks therapy!) so I’m going to take this part of my life back: the one where I get to express myself freely. So fuck yeah freedom of speech and all that nonsense. I’m not saying I’ll write here often, it will still mostly be pictures and reblogs and what have you, but occasionally I will write… like now.
Let’s talk about Liza Long. She recently made a post in her mommyblog which went viral and has garnered all sorts of attention for her and her son, whom she has deemed a future mass-murderer. Fucked up of her to say, but okay, that’s her view on the situation. I’m not going to get into my opinion on her taking that view or the other vile things she has said in her blogging under the guise of hyperbole, but I will say this… attaching her son’s full name and his image to the blog was WRONG.
In the age of digital archiving and employers Googling candidates’ entire lives, this will make sure he is never hired anywhere… ever. And worse, when he and her other children are old enough to get online and go to look up their names, they will see exactly how she feels about them and all the spiteful words she has thrown their direction in her blog posts. So many people dismiss these instances as hyperbole, but these are things you think or privately converse with girlfriends about… you don’t make them available for the public to see for the rest of history.
As a high-functioning autistic adult, had my mother outed me as a child or written these things online, I would have NEVER been afforded the chances I’ve had in life: to hold jobs, to travel, to make friends, to have relationships. The words she’s written have labeled her child with a horrible stigma for the rest of his existence. Even if mental health counselors are able to help rehabilitate him into a productive member of society, he has little chance of ever making use of that ability… thanks to his mother’s lack of foresight in protecting her child’s identity and privacy. I’m not even going to begin to wonder what she was thinking when she embarked on this path and what she’s thinking now as she accepts opportunities to further tarnish her child’s image very openly on national television with her morning news appearances later today.
While I am the first person in line to scream from the mountaintop about how our country needs better mental health care options, exploiting a child was not the way to do it. I have to wonder if she discussed this with his counselors or a mental health professional familiar with their situation before doing this. Somehow, I doubt it.
I know some people will disagree with me or complain about how I’m high-functioning so their child is worse off than me and blah blah blah typical pissing contest mommyblogger BS, but I needed to write this to offer the perspective of someone who could have been in her child’s position, had my mother not given a damn about my future. Thank goodness my mother has more sense than that and wow, do I love and appreciate her more now than I ever have!
For all the parents whose children have mental (or even physical) health issues: please protect your child’s identity online. HIPAA exists for a reason: to protect the privacy of a patient. As a parent, you should be fiercely protective of your child’s right to privacy, even more so than their medical care provider. If you can’t adhere to ethical privacy standards… who will?
You NEVER know what sort of mental health techniques and therapies will be available over the next few decades as your child grows and turns into an adult. GIVE THEM A CHANCE to be a productive member of society and don’t just dismiss them as being hopeless… the minute you put your child’s name and/or picture on the internet, along with their issues (and your own issues), you are forever attaching that child to whatever you’ve written about them, good and bad. I’m not saying keep your thoughts to yourself, but take the proper privacy precautions and PLEASE give your kids a chance to thrive, without the stigma.