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?
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.
The Committee on Oversight and Government Reform is having a hearing on autism this Thursday. Use this form to weigh in:
This is what I said:
To Whom it May Concern:
I am an autistic adult near Atlanta. I was disturbed that it took such outcry to get people like me invited to the meeting. I appreciate the improvement but wish the Committee had realized that discussing a group of people sans members thereof was ill-advised without pressure from the public.
It is also surprising that SafeMinds is invited. I hope all parties involved will treat them with the gentle credulity many Americans extended to the family conspiracy theorist over Thanksgiving dinner. I wonder why the Committee is encouraging them to speak, and publicly embarrass themselves, when they are objectively wrong. Giving them influence in federal policy or spending is letting urban legends shape the flow of tax dollars. Taxpayers deserve better than to see their money given to hucksters or their gullible followers.
Despite dubious beginnings, the meeting is an opportunity. U.S. Representatives can listen. The part of government charged with responsibility for federal appropriations can learn what we need. Society can use resources effectively, cut waste, alleviate suffering.
I am politically aware. I vote. I contact my elected officials. I know our political history. Government can do things well. Taking our perspectives seriously allows us human dignity. It is also practical. Autism can be a success story if we, the most knowledgeable and most affected by any decisions the Committee makes, are heard.
Please make it so,
R. Larkin Taylor-Parker
Last year, I published a manifesto. The blog took off. I was optimistic about the Internet as a launch pad for change. It has been a fine, tumultuous year. I protested, spoke, wrote, met interesting people, harassed Autism Speaks, hosted a small, autistic settee, and strongly implied an endorsement of a controversial transit referendum in the voice of The Arc of Georgia’s official Facebook page. I toed the line of permissibility, opining on its value to the people we serve without explicitly saying how to vote. I got tired, disillusioned, about online happenings. I have been on Tumblr long enough to see arguments circle back on themselves, downright dangerous war metaphors, and one argument on what other segments of the disability community should call themselves. In the face of the last, I turned off my computer. A prolonged exposure would have been unnecessarily embittering.
These things changed. My relationship to other autistics shifts with the vagaries of the endless flame war. Some aspects of my life have not. My thoughts take the shape of beams and pillars, flying buttresses, heavy, structural forms. I prefer extended tuba to human company. I hear, see, feel, and smell more than others. My world is sharp. I stare blankly at sarcasm. Eye contact feels foreign. I avoid it unless it might be to my advantage. Encounters with most online autistics feel foreign, too. Meeting them in person is nicer. I love the Internet as a platform for our community, but meatspace stays humane. I still chafe at identity politics, unheimliche mores, people who think the end justifies the means. A sense of duty, compassion, for suffering persons like me, that I hope and believe will be a people, draws me in. I hate speaking as an autistic. I look forward to being a special education lawyer and dispense with identity-as-expertise, a translator’s role. I still approach unfamiliar allistic parents of autistic children like buildings with overactive fire alarms.
Their kids keep me trying to reach them. When a boy outside the worst of the storm was frightened of Hurricane Sandy, I answered non-questions on Twitter.
When did he become aware of hurricanes? Was it a bad one? What does that category mean to him? Expand it. Consider explaining storm classification, etc. Break it into subcategories, not all of which are life-threatening.
I did it less out of the proper sentiments than faith, inability to bear children’s pain, the shadow of a memory. When I was a child, before I knew what we were, an older autistic helped me. She died before I could thank her. I am alive, independent, and planning a career that will allow me to be open about my neurology. The audience and arena are not ideal, but the performance is necessary. The welfare of many autistics, especially children, depends on it. I will contribute as I can. I was born autistic but choose to be a tuba player. I know bass lines, adrenaline, low margins for error. I built my life around the understanding that the show must go on.
I found out that I was autistic when I was sixteen, but it was not something that I was ever told. I had to discover this in secret, overhearing my parents talking quietly with my therapist—I was not invited to participate, then or later. I wasn’t permitted to think that I was anything but neurotypical, or make decisions on myself.
I was suicidal when I was sixteen.
The years preceding it were not pleasant ones; I come from Navy family, and I have lived on Pacific and Atlantic coasts, seen the beaches of a half dozen states, and attended nine different grade schools. From as far back as kindergarten (and I suspect farther still, although my memory fails me here), I was the victim. I couldn’t make eye contact, I couldn’t remember how to speak when stressed, I fixated on strange things. I was small and clumsy and idealistic, and all of this made me the perfect target.
I was pushed on the way to every recess by a girl in overalls when I was five; my ideas were stolen and shared by a girl with the ability to speak in front of others when I was seven; only one girl would let herself be seen with me when I was nine. I withdrew into science and literature; in time, I could give the Latin names of every bird of prey in North America, and I escaped into dreams of dragons and magic and valiant heroes who would accept me as one of them.
I was known as “Bird Girl” and “Dragon Master” when I was twelve. I remember the sudden, awful epiphany in the midst of seventh grade history class: people were mocking me. I was a failure. Then, I thought that everyone else had been dealt the same hand as me, that they too had started life with eyes downcast and trouble reading faces, but they had learned to adapt. I alone had been left out from this—I could not overcome that which everyone else could.
By sixteen, I thought that if I could not even manage to live properly, I might as well not live at all.
That was when I found out I was autistic. It changed me in ways that therapy had not. I wasn’t the same as the others. I wasn’t failing the same test that everyone else passed. I was playing a different game entirely, and could I be wholly blamed for getting a different outcome than the others? Could a football team be blamed for getting a different score than a basketball team?
It was a daunting thought. My worldview, my thoughts, my outlook on life slipped out from under me like my feet do so very often. Had I been doing my best? Had I been succeeding as an autistic girl, as I had not as an allistic one?
At seventeen, I began to wonder just how much of my personality was the autism, and just how much was me. Could I learn to only use the parts of me that were okay? I burrowed into writing and arts and sciences, and reveled in it. No one reading my works knew who I was, or what I was; they were free to appreciate my writing without my human faults getting snarled up in it. I could be quietly, passively autistic, and carry on in my life. I didn’t realize that I cannot be passively autistic any more than I can be passively myself; it is something kinetic, fundamental, as powerful as the earth beneath my feet or the bitter bite of winter in the air. Attempting to duck under it would be as impossible as attempting to quietly exist outside of gravity.
I learned at eighteen that, while I could not tolerate this sort of passiveness, the world would not tolerate a brash announcement of who I am or provide the slightest bit of leeway. I would still be expected to write the same papers and work the same jobs and attend the same events. I would still be expected to follow social etiquette and make small talk and understand when someone isn’t feeling well. Outing myself would garner either disbelief or pitying treatment akin to that of an untrained puppy. Whether or not I started on the same level as everyone else, I would still be expected to meet those same standards.
I worked at McDonald’s when I was eighteen. It was not the sort of drudgery that is so often feared by high school students facing their first jobs. It was a den of ignorance and outright malice. I was mocked by my own boss for being autistic after I made the mistake of outing myself to her—and even that was brought upon by her habit of shouting an inch from my face. I do not know how I managed to survive three months there; the prospect of returning for another month this winter is a fearsome one, but I cannot afford to go without employment and my prospects for other work are bleak, to say the least. I learned from them that people will, willfully or not, attempt to destroy the last fraying pieces of an autistic employee’s confidence.
I learned from college that being autistic would not prevent me from living a good life.
I made friends. Awkwardly, painfully, clawing for every inch of ground, but I made friends. I worried that I was screwing it all up; I still worry that I am. I still can’t make good eye contact, and I still miss half the sarcasm bandied around. There is not a minute that passes that I don’t worry about whether I seem normal enough, but I can clumsily manage life in an allistic world. I sometimes even hear the phrase, “There’s no way you’re actually autistic,” which would have filled my sixteen-year-old self with pride; it now fills me with venomous contempt.
The life I live now is not a secure and solid thing. It is built on a cracked and warped base, and I am perpetually forced to spend more time mending myself than making progress. It hasn’t been easy. It won’t likely ever be easy. I second-guess myself and klutz up conversation, I trip over my own feet and know more about a bird’s psyche than a human’s, I eat the same thing for lunch every weekday and cannot remember anyone’s name, but on most levels, I am managing.
At nineteen, I am autistic, gay, optimistic, and I lead a good enough life.
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.
I really can not wait to become a special education teacher. I don’t know what it is about autistic kids, and children with down syndrome and others that draws me to them. Maybe it was the little boy Michael that I met, that changed my perspective on life but I can not wait to graduate with a degree in psychology and special education. I know this is a little random, but I’m watching a Night of too many stars and I just want to be a teacher already!
That worries me. I am autistic. I hate events like that, focused on fixing and curing us, not accepting us as we are. If Night of Too Many Stars made you feel warm and fuzzy, you have the wrong mentality about people with disabilities. Autistics need allies because there are so few of us but do not need anyone to speak for us. Stay away from our impressionable children if you think an event where outsiders talk over us, compare our minds to disease, tokenize us, and treat us as broken is admirable. Good intentions will not prevent you from instilling a sense of inferiority in kids with disabilities. Your attitude or career plans need to change.
Most of the people criticizing it are autistic. The rest, unlike you, have listened to one or more autistic person(s). Segregated schools are not what we want. We want real education, destigmatization, jobs, and full lives in our communities. The vast majority, though not all, of us are anti-cure. Most of all, we wish people would listen to us about what we want for ourselves, our lives, our future, our community. Awareness that compares part of the bedrock of our personalities to cancer and HIV does more harm than good. Most of us would like an end to events like this. We prefer to speak for ourselves.