Lindsay Miller, a lesbian who calls herself a queer woman, logged 'Queer by Choice, Not by Chance' over at the Atlantic. The general thrust of her argument is that she is erotically attracted to both men and women, but she chooses women. She likes the equality of a same sex relationship and the fact that there is no male privilege to dismantle when both partners are women. She likes basing her relationship on the abilities and attributes of the two partners, instead of falling into social expectations regarding what's appropriate for men and women.
She rejects the notion that gays are 'born this way' as condescending, the poor dears just can't help themselves, so we should tolerate them because they are incapable of being anything other than what they are. I agree with her. The 'born this way' argument makes not a jot of political sense. People are born with Down's Syndrome, but that doesn't mean they're allowed to join the military. Being born that way is an argument for eugenics: test them in utero and abort the undesirables. That is indeed what is happening to children with Down's Syndrome. If LGBT people are indeed 'born this way', then clearly, we ought to figure out how to test for it so that they too can be aborted. Society will be better off without the burden of their abnormality.
There are activists on behalf of people with Down's Syndrome who are deeply dismayed by the large numbers of parents who are choosing to abort Down's Syndrome babies. This is a complicated moral dilemma that depends on what we define as a 'life worth living' and who gets to decide. I have a son with autism, and although I don't know if he will ever be able to live independently, he's a wonderful young man and his life is definitely worth living, even if it may not be the life I would have chosen for him, had I the power to choose.
Actually, I did have the power to choose. My partner and I (I was married at the time), knew there was a possibility of him being born different, both because of the genetic heritage and because before his mother even knew she was pregnant, she was negligently X-rayed, and we had to go for genetic counseling in order to find out exactly how many rads the less than three week old fetus had received, and what sort of risk that posed to the infant. We discussed the risk, discussed what a 'meaningful life', and chose to carry the pregnancy to term. Our doctor told us most people do not make the choice we made. Faced with the risk of possibility bringing a less than perfect child into the world, they abort.
The risk in our son's case was not great; the amount of rads he had received showed no greater risk than the naturally occurring background risk. Therefore, we believed our baby would be all right, but we knew he might not be. We underwent further testing. We decided that if our child had no capability for independent adulthood, we would abort, but testing was normal. Medicine gave us as much reassurance as it could, and yet, our son was born autistic.
Now that he is a young adult, I know that he might not ever achieve a fully independent adulthood, but I also know now that the ability to become a corporate drone is not the measure of a fulfilling life, a meaningful life, a life worth living. My son loves dogs and cats, and the mutual joy of him and a new dog is definitely worth seeing. He is good and kind to others, funny, and works well within his knowledge. Recently he completed a job training program where he was working in housekeeping. He didn't like it, but he won praise from his supervisor for working well and cheerfully. His supervisor didn't even know he didn't like the work he was doing.
How many wonderful LGBT people might be aborted if indeed we are 'born this way?' I'm guessing most of them. If parents aren't willing to have a child with Down's Syndrome or autism or any of a myriad of other 'defects', if they can't see value to a life that is different from the norm, if they think abortion is the appropriate response to difference, why on earth would they carry a child to term who is at risk of growing up Lesbian, Gay, Bisexual, or Transgender? Whatever other argument you might make, it must be easier to parent a straight child than a gay child.
When my son was young and it was very difficult to be a single parent (we had divorced), an Amish man who was the father of a child with a severe congenital illness said something I have never forgotten, "These are the children that teach us the meaning of love."
A bigoted parent who cannot love a Lesbian, Gay, Bisexual, or Transgender child, a parent who perceives their child as defective, damaged, damaging, and unworthy of equality, affection, and dignity, does not know the meaning of love. As parents it is our duty to love unconditionally, and although we have a responsibility to teach our children how to live, we also have a duty to learn the lessons that our children teach us: the lessons of love, laughter, and faith that we are the people God wants us to be.
These are lessons that can be learned by anyone. You don't have to be born with a special gift to have compassion, you don't have to be born with a special intelligence or ability to care about the welfare of a child to want that child to grow up happy and healthy as the person that they are. You don't need to be born a certain way to respect your child's right to become the person they think they ought to be, to choose their own religion, creed, politics, and yes, love.
The First Amendment protects our right to live according to our conscience. Christian demagogues, you were not born that way. You can change your religion if you choose. Although your religion is a choice, the Constitution protects it. You weren't born Republican or Democrat, but the Constitution protects your right to political expression. You weren't born with a creed, but that, too, is protected.
I do think I was born this way, but because I don't believe biology is destiny, I fully believe that I have the right to choose the life my conscience requires me to live. Our Founding Fathers understood the right to conscience as the fundamental motivator to secure the right to freedom of religion, freedom of creed, freedom of politics, freedom of the press, and freedom of assembly.
Every single one of these freedoms is the right of LGBT people, not because we were born queer, but because we were born human. I choose to believe that God created me and that to hate myself is to hate God's handiwork. I do not belong to an organized religion, but I have a deep and persevering faith in the rightness of God's creation, and that includes me. I choose to assemble with other queer people and I choose to publish articles like this one because I have freedom of the press to promulgate my views, no matter who disagrees with them or dislikes me. I choose to vote Democrat because I believe, that for all their faults, they are the party most likely to do the most good for the most people. I have the right to vote Democrat because even though I was raised Republican (I worked the 1972 and 1976 campaigns as a Republican youth volunteer), the Constitution protects my right to change my mind in matters of conscience; I am not compelled to vote as my parents voted.
So I say to the demagogues: you too have the right to choose. You can choose love, freedom, and dignity for all people, or you can put up with me exercising my Constitutional right to be publicly queer, and to insist upon the goodness and equality of all God's children, whether they were born this way or not.
These are the children that teach us the meaning of love.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, September 13, 2011
Friday, November 12, 2010
What If It's Not Autism?
A pediatric doctor and researcher offers a compelling presentation about his theory that Chronic Fatigue Syndrome (CFS) and autism are the same disease. He theorizes that CFS is an adult onset Neuro-Immune Disorder and that autism is what happens when it onsets in early childhood and that ADD and ADHD is what happens when it onsets in older children.
His research with neuroSPECT scans and other medical data make a provocative case. If you have an interest in autism, CFS, or ADD/ADHD, it's a very interesting video that is well worth checking out. It proposes a radical paradigm shift in thinking about these orders, their impact on society, and how to research and treat them. He does not advocate weird treatments like chelation -- on the contrary, he debunks such bogus treatments. He advocates old-fashioned pediatric treatment with conventional tools and evidence based medical testing.
His research with neuroSPECT scans and other medical data make a provocative case. If you have an interest in autism, CFS, or ADD/ADHD, it's a very interesting video that is well worth checking out. It proposes a radical paradigm shift in thinking about these orders, their impact on society, and how to research and treat them. He does not advocate weird treatments like chelation -- on the contrary, he debunks such bogus treatments. He advocates old-fashioned pediatric treatment with conventional tools and evidence based medical testing.
Thursday, January 15, 2009
Update on Many Things
I have completed Men of Honor , the sequel to Pirates of the Narrow Seas , and posted it online at fictionpress.com. A few enthusiastic readers have read the first one, and I hope they will enjoy the second one, which I personally think is even better. Both novels can be read free online at: http://www.fictionpress.com/~mkei
Having been spending my creative energies on the novels (I think there is one more story in me about Lt. Peter Thorton and his adventures), I haven't written much poetry. Tanka requires relaxation to enter the contemplative state of mind necessary to write it, and there hasn't been much of that in the past year. My young adult children have come to live with me full time, my promotion at work has been full of stress thanks to a bad boss, and the crazy schedule I work at Wal-mart means I have rarely been able to take the solace of working the skipjack.
On the positive side, my health is the best its been in decades as I roll the cancer dice and beat the odds once again. My son, who is autistic, is working for his GED. And being able to write a novel is a signal achievement, since the ability to process language was a casualty of developing narcolepsy long ago. I cannot say I have overcome narcolepsy, but I have rebuilt my skills to the level that I can function in spite of it.
Take Five : Best Contemporary Tanka is also consuming a great deal of my time. The nomination process is in its final days, after which we will need to make our final selections and I will need to contact the poets to request permission to reprint. A final date for the appearance of the anthology has not yet been selected, but it will be in the spring of 2009. I and my editorial team has read approximately fourteen thousand poems and has achieved our goal of reading all tanka published in English in 2008. We are grateful for those poets and editors who provided us with copies of their works.
Having been spending my creative energies on the novels (I think there is one more story in me about Lt. Peter Thorton and his adventures), I haven't written much poetry. Tanka requires relaxation to enter the contemplative state of mind necessary to write it, and there hasn't been much of that in the past year. My young adult children have come to live with me full time, my promotion at work has been full of stress thanks to a bad boss, and the crazy schedule I work at Wal-mart means I have rarely been able to take the solace of working the skipjack.
On the positive side, my health is the best its been in decades as I roll the cancer dice and beat the odds once again. My son, who is autistic, is working for his GED. And being able to write a novel is a signal achievement, since the ability to process language was a casualty of developing narcolepsy long ago. I cannot say I have overcome narcolepsy, but I have rebuilt my skills to the level that I can function in spite of it.
Take Five : Best Contemporary Tanka is also consuming a great deal of my time. The nomination process is in its final days, after which we will need to make our final selections and I will need to contact the poets to request permission to reprint. A final date for the appearance of the anthology has not yet been selected, but it will be in the spring of 2009. I and my editorial team has read approximately fourteen thousand poems and has achieved our goal of reading all tanka published in English in 2008. We are grateful for those poets and editors who provided us with copies of their works.
Tuesday, November 04, 2008
Fighting for the Right to Vote
Well well. Hank Stuever at the Washington Post has really put his foot in it. He opposes voting early. He is apparently one of those lucky elitists that doesn't have to worry about taking off work to stand in long lines to vote. I have voted every election I've been able to, but there was an election when I couldn't vote because the employer didn't let me take time off work to do it. We were directed to vote before or after work, and don't be late. I couldn't vote before work because the commute and the lines at the poll were too long. I couldn't vote after work because I got to my polling place 5-10 minutes after the polls closed. While my polling place is conveniently near my home, it is not conveniently near my place of work.
(There didn't used to be adequate parking at my polling place either, but that issue was fixed this year. We got parking reasonably close and didn't have to cross a busy street/minor highway on foot to reach the polling place.)
I voted Yes on Maryland's proposal to allow early voting and to expand the locations for voting. I'm not quite sure about how the location thing works, but I'll say yes to anything that makes it easier to vote. More locations and more days on which to cast ballots is a big YES to me. For years pundits have been bemoaning the low voter turnout. Did it ever occur to them that more people would vote if they could?
I was lucky this year -- my day off just happened to coincide with election day. I was able to stroll in at a low volume hour and spend ten minutes and be done. My son, however, was not so lucky. He recently turned eighteen. He's also autistic, and being able to vote is a huge milestone in anybody's life. We tried to register him to vote at the same time we got his learner's permit, at the Motor Vehicle Administration. We never got any paperwork confirming it, so we went to the election board in person and asked them. They looked him up, said he wasn't registered, and that all MVA voter registration applications had been processed. He then registered to vote right there in the election board office and showed the necessary ID: driver's license, social security card, etc.
He never got a voter's registration card, which worried me, but he did get ballot instructions with his polling place and information on how to vote and who the candidates and questions on the ballot were, so we figured we were all right. When he checked in to vote, they had his name and address, but they issued him a provisional ballot. An election judge whisked him away without me. I understand that the right to vote is private and all that, but my son being autistic doesn't cope well with unexpected change. We had prepared him for voting: what issues were important to him, how the candidates stood on those issues, what the constitutional amendments were and what they meant, what the ballot looked like and how to fill it out -- he was informed and prepared to vote.
He spent half an hour in a corner of the gym, reading and filling out paperwork. He's a slow slow reader and writer. The printed word is not the best way to communicate information to him. Papa normally helps him with forms, explaining what they are and what they mean. This time I didn't get to help. A complete stranger with no knowledge of his disability plunked papers in front of him and left him to figure it out on his own. Eventually he got to sit at a voting booth and vote. The paper ballots are not like the computerized ballots, and the paper machines don't look like and don't work the same as the computerized machines that he was prepared for.
He thinks he got to vote for the candidates and issues he wanted, but he isn't sure.
When he came out, we asked an election judge why he was issued a provisional ballot. She didn't know. We got shuffled among three different tables. The upshot was nobody knew. They 'guessed' it was because his Social Security number and driver's license couldn't be verified -- both of which he had showed when he registered and both of which he had on him when he was voting. They assured us that if they could verify his registration, his vote would be counted.
Um, yeah.... I'm supposed to feel confident that his vote is going to be counted after all this? We did everything necessary to register to vote not once but twice and had all the proper paperwork and ID every single time... and they still have doubts about his registration?
And now Mr. Hank Steuver tells us that people who vote early are somehow not part of "We The People", that they're just some kind of hipster fashionsetters not to be taken seriously? Puhleeze.
For some of us, voting isn't easy. Some of us have to fight for the right to vote and make sacrifices. We shouldn't have to jump through triple sets of hoops to get registered to vote. We shouldn't have to make a choice between our job and our vote. We shouldn't have to be baffled and confused by the voting process.
Elections should be organized, accurate, and staffed by people who know what they're doing. Election offices -- and organizations that assist in registering voters -- should do so correctly and promptly. People with disabilities should be able to participate on the same terms as everybody else. I'm still wearing my 'I Voted' sticker. I earned it.
(There didn't used to be adequate parking at my polling place either, but that issue was fixed this year. We got parking reasonably close and didn't have to cross a busy street/minor highway on foot to reach the polling place.)
I voted Yes on Maryland's proposal to allow early voting and to expand the locations for voting. I'm not quite sure about how the location thing works, but I'll say yes to anything that makes it easier to vote. More locations and more days on which to cast ballots is a big YES to me. For years pundits have been bemoaning the low voter turnout. Did it ever occur to them that more people would vote if they could?
I was lucky this year -- my day off just happened to coincide with election day. I was able to stroll in at a low volume hour and spend ten minutes and be done. My son, however, was not so lucky. He recently turned eighteen. He's also autistic, and being able to vote is a huge milestone in anybody's life. We tried to register him to vote at the same time we got his learner's permit, at the Motor Vehicle Administration. We never got any paperwork confirming it, so we went to the election board in person and asked them. They looked him up, said he wasn't registered, and that all MVA voter registration applications had been processed. He then registered to vote right there in the election board office and showed the necessary ID: driver's license, social security card, etc.
He never got a voter's registration card, which worried me, but he did get ballot instructions with his polling place and information on how to vote and who the candidates and questions on the ballot were, so we figured we were all right. When he checked in to vote, they had his name and address, but they issued him a provisional ballot. An election judge whisked him away without me. I understand that the right to vote is private and all that, but my son being autistic doesn't cope well with unexpected change. We had prepared him for voting: what issues were important to him, how the candidates stood on those issues, what the constitutional amendments were and what they meant, what the ballot looked like and how to fill it out -- he was informed and prepared to vote.
He spent half an hour in a corner of the gym, reading and filling out paperwork. He's a slow slow reader and writer. The printed word is not the best way to communicate information to him. Papa normally helps him with forms, explaining what they are and what they mean. This time I didn't get to help. A complete stranger with no knowledge of his disability plunked papers in front of him and left him to figure it out on his own. Eventually he got to sit at a voting booth and vote. The paper ballots are not like the computerized ballots, and the paper machines don't look like and don't work the same as the computerized machines that he was prepared for.
He thinks he got to vote for the candidates and issues he wanted, but he isn't sure.
When he came out, we asked an election judge why he was issued a provisional ballot. She didn't know. We got shuffled among three different tables. The upshot was nobody knew. They 'guessed' it was because his Social Security number and driver's license couldn't be verified -- both of which he had showed when he registered and both of which he had on him when he was voting. They assured us that if they could verify his registration, his vote would be counted.
Um, yeah.... I'm supposed to feel confident that his vote is going to be counted after all this? We did everything necessary to register to vote not once but twice and had all the proper paperwork and ID every single time... and they still have doubts about his registration?
And now Mr. Hank Steuver tells us that people who vote early are somehow not part of "We The People", that they're just some kind of hipster fashionsetters not to be taken seriously? Puhleeze.
For some of us, voting isn't easy. Some of us have to fight for the right to vote and make sacrifices. We shouldn't have to jump through triple sets of hoops to get registered to vote. We shouldn't have to make a choice between our job and our vote. We shouldn't have to be baffled and confused by the voting process.
Elections should be organized, accurate, and staffed by people who know what they're doing. Election offices -- and organizations that assist in registering voters -- should do so correctly and promptly. People with disabilities should be able to participate on the same terms as everybody else. I'm still wearing my 'I Voted' sticker. I earned it.
Tuesday, June 19, 2007
Reasonable People
This isn't my usual blog entry, it's personal. Very very personal.
At the broken cliff,
pebbles tumble down again,
a gathering of scree.
At thirteen my only son
still struggles with his letters.
My son is autistic.
Let that bald statement resonate a while. Dredge up all your stereotypes and media hype, 'Autistism Every Day' with the mother thinking about killing herself and her autistic daughter, about James McElwan, the autistic teenager shooting 17 points in the only varsity game he was allowed to play and being hailed a hero. Think about head banging, severely disfunctional kids, about the Rainman, about everything.
My son is different.
My son is a unique person who shares many of the challenges of other youths with autism, but the hype and the hopelessness, the extremes of autism, are not him.
Nowadays they label him 'high functioning' and diagnose him with Asperger's Syndrome -- as if the anguish of his childhood was somehow unreal, unimportant, and insignificant. As if nobody ever told me he was hopeless, that he would never be mainstreamed, would probably never speak, was mentally retarded, and would never hold a job or live independently.
As if it was 'easy' for him to overcome what must have been a 'mild' language impairment. As if we never spent a day consumed with six hours of tantrums. As if nobody had ever stood in line behind me at the grocery store, listening to him scream, saying, "If that was my kid, I'd smack him." A firm believer in non-violence, I was sorely tempted to turn around and tell that woman, "If you were my kid, I'd smack you."
I knew there was something wrong with this child when he was born. He slept too much. I was told he was a 'good baby' and we were lucky. He slept and slept -- a relief since his older sister had been colicky, but worrisome too. Late to his milestones. My partner's family kept saying, "He's a late bloomer. You worry too much." The pediatrician said the same thing. I tried to listen and be reassured.
At two and a half, I called Child Find. They came, saw him, and ventured to suggest he was mentally retarded. My ex went ballistic; that side of the family refused to accept that there was anything wrong with him and identified me as the problem.
We split up, I took the kids. We were in a shelter for a while, then a flat in an old house. We were desperately poor. I had my own disabilities to deal with, but I knew, absolutely knew, that the kids were better off with me. I accepted my children as they were and wanted what was best. I wanted to help my kids, not pretend everything was fine when it obviously was not.
To make a long story short, he was in pre-K, and the school wasn't helpful. They even asked to tie him to his chair to make him sit through Circle Time. I called a laywer, a very nice man who didn't charge me a dime to tell me what my rights and my son's rights were, and to advise us what to do. By the time my son was four I had gone through plenty of bureaucracy and a great deal of testing, and he was diagnosed with Pervasive Developmental Delay with Severe Language Impairment and Austistic Type Symptoms.
How's that for a mouthful? It's also some fancy footwork to avoid a diagnosis of autism. When I asked the psychologist why, when my son had 13 of the 14 classic symptoms of autism, he didn't diagnose him, he replied, "Autism is a throwaway diagnosis. I don't diagnose any child with it if I can possibly avoid it because the schools will shut him away and do nothing for him. They think it's hopeless, but I think your son can develop."
Let me give you a simple example of my son. As part of his testing, he was given a standard IQ test. IQ tests are highly language dependent. He scored a 50. Your dog would score a 50! When given a different, non-language based IQ test originally developed for Deaf children, he scored 120. With this we had a portrait of a bright young man who was deeply impaired.
The school did a 180. With his new diagnosis they put him in a classroom for students with Communicative Disorders. It was small, with a high teacher to student ratio. He had a wonderful teacher for two years, and a great speech pathologist, and then two more years with another great teacher. When he was first diagosed and I hoped that he could eventually be mainstreamed, they told me that was not a reasonable expectation. Yet in 4th grade he was placed in an academic class with reading support. He is now 16 and mainstreamed in all classes and slated to graduate in two years. Nationally, only 25-30% of children with autism graduate. He is a B student.
He was deeply language-impaired when he was young. When I spoke, nothing made an impression on him. If I had suddenly started speaking to you in Japanese, you wouldn't understand (unless you are a Japanese speaker), but you would realize that the sounds coming out of my mouth had meaning and were intended for you, and you would make an effort to find some way to communicate. Not my son. He ignored everything until he couldn't ignore it anymore, then he screamed. And because he also had perserverant behavior, once he started screaming, he couldn't stop.
At school they taught him 'Total Communication' which used everything to communicate: speech, sign language, pictures, pantomime, symbols, routine schedule, demonstration, etc. He learned how to sign 'more' and a few other words, and then, when he was four, said 'cookie.' However, he was unable to answer a question like, "Do you want a cookie?" He would simply stare at me.
In 4th grade, he entered with a barely second grade reading level. He did his reading homework dutifully. He set the timer as he was taught, and when it dinged, he stopped. Right in the middle of a sentence, paragraph, page, or story. He was not interested. I searched and searched, trying out many different books. I knew the key was finding something that he liked. Eventually, I found it: Japanese comic books. He loved Card Captor Sakura and Gundam Wing. The night we drove home from the bookstore with him reading in the car, holding up the book so the light of the streetlights fell on the pages, I knew we'd found the ticket. In fourth grade he gained two grade levels, catching up to his 4th grade reading level.
He is now not only reading at a grade appropriate level, he is taking Spanish in high school. He greets me with 'Hola, padre, como estas' in his emails or when I come to pick him up.
When this child was 6, and had few words, I some how made him understand that his beloved cartoons had 'voice actors' who got paid for the job of being the voices. Once he understood that, that's what he wanted to be when he grew up. I was in despair... how could this child with nearly unintelligible speech composed of only a few words possibly become a voice actor? But I didn't discourage him. His sister, who was 8, hit on the notion of turning on the close-captioning on the videos and making him read them out loud and act the parts. At first he only a knew a few words, but soon he could recite the whole thing, altering the pitch of his voice for male and female roles. (Memorized from frequent watching of the tapes, I suspect.) He was a perfect mimic. When he randomly produced a sound or statement, I could identify exactly what video, scene, and character it had come from.
When I say 'random,' I mean random. He would explode with sound effects (he adores them, especially farts and belches), and random statements that bore no relationship to the context. I was delighted -- it meant he was using his imagination. Previously, when he was little and showed no signs of imagination, I was deeply worried. To be blind or mute is a disability, but to have no power of imagination is be subhuman. But it was there, it just needed a means to express itself. Cartoons were it. Thus, he early on acquired a lasting nickname, "The Random Noise Generator." We're all very used to it, but we have to admonish him when we're in public places, like restaurants, that he needs to steer clear of bodily functions and turn the volume down.
I have seen the same behavior in other bright but language-impaired autistic children when I have been a substitute teacher and paraprofessional in the public schools. I encourage such behavior, although most people try to suppress it in favor of 'more appropriate' expression. Noooo! The child has found a way to express himself, don't squelch! Run with it! Give him a few years and his vocabulary and expressiveness, yes, even his social skills will improve. At the very least, he will become popular with other children. I cite my own son's experience as evidence. When his fellow students dubbed him, "The Living Cartoon" it was a measure of admiration and affection. Come on. What's wrong with making people laugh? Even in the middle of a test?
When my son was 12, he appeared on stage of the first time and read a story to little children, voice acting the parts. He OWNED the stage. No, it's not just me and my paternal pride. The Director of the program was sitting next to me and kept saying, "He has talent. He has charisma." Other children on stage were good, but there was a quantum difference. He took to it like a dolphin takes to water.
Less than a year later he got cast by the local community theater for a bit part in a playreading series. For this, the actors sat on stage and read the parts, voice acting them, then the audience engaged in discussion about the play and whether the company should stage it. Of the 16 actors on stage, he was one of the best. He was absolutely furious when adults far more experienced with himself muffed their lines -- he had rehearsed diligently for a month. They hadn't. He was so good that the technical director for the theater sought me out at work (I worked at the theater then) to tell me how good he was.
He continues to study drama in school and to participate in theater workshops. He loves comedy, especially physical comedy -- his first exposure to Charlie Chaplin had him laughing so hard he nearly fell out of his chair. He has had minor roles in other productions. After high school he plans to go to college to become an actor. He speaks clearly now and people meeting him for the first time often do not realize there is anything different about him.
He reached this by imitating cartoons. When he was in elementary school his educators complained about his 'stereotyped' behavior. I was delighted by it. He had gone from a child with no emotional expression who couldn't even say, "I'm hungry," to a child who had the vocabulary of cartoons to call upon and use to communicate. The gross facial exaggerations and extreme body responses and physical humor of cartoons suited him perfectly. As he slowly began to utter statements of his own volition, he repeated segments of cartoons and movies that served his needs. During this phase people thought him odd, but as his repetoire of movies and expressive ability expanded, he developed fluency and naturalness.
Unfortunately, if caught in a situation for which his cartoons or family has not prepared him, he doesn't know what to do. Three years ago I fell asleep while making dinner and the food burned, filling the house with smoke and setting off the alarm. I woke up, ran to the stove and dealt with it, then looked for him. I found him outside. He had been taught that when the fire alarm goes off, you leave the building and meet at the designated location. He had done exactly that. But all the time the house was filling with smoke, he continued what he was doing without reacting to it. Nobody had ever told him what to do if you smell smoke! I swiftly updated his education on that point! It also underscored to me that you cannot simply assume he knows something -- you must spell out every single little step. Once he understands it, he is reliable about performing it.
In another example, we usher at the community theater. I taught him how to read the seat numbers, taught him how to greet patrons, and explained to him that he needed to walk slowly so that old people could keep up with him. He practiced his lines diligently and did a good job. Patrons complimented him 'What a nice young man!' -- including the old lady who was once so offended by his poor table manners that he had been uninvited from volunteering at the theater for an extended time. However, when asked an unexpected question, like, "How long is the show?" he simply looks blankly at them. If you've dealt with autistic people, you know the look. The we-are-now-on-another-planet-and-you-are-only-vaguely-relevant-to-my-existence look.
I have been reading Reasonable People by Ralph James Saverese, recognizing much of my own experience, and being angry and rejecting much of what I also read. Don't get me wrong, I respect Savarese and think he and his wife have done a lot, and I concur with his liberal position on the need to truly serve the poor, the disabled, children, etc. DJ has developed a lot, and its due to the Savereses. My child wasn't abused and placed in foster care and bounced around from home to home.
But still...
And my experience is not just with my own son; I did a year teaching severely handicapped youth computer science, about half my students were non-verbal, several were autistic, and most were not literate. My experience with my son helped me get through to them. I'm not saying I worked miracles. What I'm saying is that I got them to achieve more than other people believed they could. The previous teacher had taught them about the Internet by taking them to a site online where they could color pictures. I taught them the basic structure of a network (by making them roleplay being workstations, routers, servers, etc, and passing a note around).
I taught them how to do a basic Google search for things that interested them. I had to spell out 'rollercoaster' and 'dogs' and 'Kenny Chesney'... but I caught one of my students shopping computer parts online to upgrade his computer at home. It took him a great deal of research, but he figured out what he needed, ordered it, and installed it. When he got the wrong part, he returned it and got the right thing. Guess what he was doing for a living? Pushing carts. You know the guys who go out into that grocery store parking lot and round up the carts? That's what he did. That's all he did. He didn't bag, didn't stock shelves, didn't sweep. He rounded up carts. Period. Because that's all they thought he could do. Because his verbal ability was low.
I have this radical notion: You teach the child you have. Not the child you wish you had. Not the child described in the textbooks and theories. As my Native elders (who have been studied even more intrusively and with less understanding that autistic people) told me, "Real life trumps theory every time." You teach them even if they don't speak, and you judge their accomplishments based on how well they do computers or art or or play volleyball, not on how well they use their voice.
You teach the living child right in front of you with their particular strengths and weaknesses. I believe, I truly believe, that every child can be reached. They can accomplish a lot more than they have been doing. Some of the students in my class were being warehoused and the aides paid no attention to them, having given up on them, but I tried to share my attention equally with all students and I did my damnedest to get through to them and I did. I'm not claiming miracles here. I'm claiming progress.
The single biggest and most important accommodation that we can provide a person with a disability is a change in our own attitudes. It's free. It's easy. It works.
By the end of that class I had every single student creating a short PowerPoint presentation to deliver to the class, voicing their slides themselves. Yes -- even my non-verbal students. They weren't very loud and their enuniciation wasn't clear, but they did it. Even the autistic girl who had started my class slumped against the wall, unresponsive, and staring into space. She watched the presentations by other students, was engaged, and eager to take her place at the projector to show her own slideshow. It took a lot of coaxing to get her to speak her slides and nobody more than three feet away could hear her, but she did it. The students loved it. They all cheered and clapped and were totally into watching each other slides.
The aides -- even the one who had thought it would be impossible to get these students to do PowerPoints -- were in the back, applauding and taking pictures. The program supervisor and a teacher from another class were in the back watching too.
Think of it. They'd gone from coloring online to making their own PowerPoints.
I got another job, working in the same building. At first my former students recognized me and greeted me when they saw me in the hall. Gradually, as time passed, they faded out, became blank, and stopped responding to my presence. Back in the same program, with the same low expectations, the same well-meaning but stupid teachers, and they slid back into the same state of apathetic, twitching, tuned out unperformance.
Gain requires reinforcement to retain.
Change requires commitment.
I love my son, but I don't think he's unusual. If you put him in the same place as those students, he'd be like them. Those students don't have to be the way they are, they can have more accomplishment, more pride, more independence.
I believed at the time I sought help for my son when he was very young that early intervention was important. Most children are diagnosed 'too late', meaning that they have fallen behind in school and developed a load of frustration that further impairs their fuction and which leads to behavior like tantrums and self-harm. These systems, the symptoms of frustration and anger, are then defined as part of the symptoms of autism.
Have you ever seen a giraffe self-harm? I have. And foxes and hawks and other animals too. I did a summer as a volunteer zookeeper at an inadequate rural zoo which shall remain nameless. The giraffes' pen wasn't large enough. They paced and the male in particular engaged in repetitive, perserverant behavior, including biting the other giraffes, banging his head against the barn wall, and other aggressive and self-harming behavior. He had to be kept separate from the other giraffes because of it. The fox, kept in her tiny cage, was pathetically eager for attention and play. She would run around and around, spastically, desperately, crashing into things. A hawk, likewise confined, picked out his own feathers, reminding me of my son picking at his scabs.
All these abnormal behaviors are things autistic children do, but these animals are neurologically normal. It is the environment that fails to provide them with enough space, affection, and attention that causes them to behave this way. Autistic people are different, but maybe many of the 'bad things' they do are not due to autism, but due to not having their needs met. People with autism are experiencing a kind of imprisonment in which sensory overload alternates with sensory deprivation. If a normal personal was subjected to alternating bouts of no sound and excessively loud sound, if people failed to relate to them and didn't have patience with them, if they were controlled and constrained the way autistic people are, they would develop similar behaviors.
In the case of autism, it is a disorder of the brain that imposes the first barrier, but it is the reaction and behavior of the people around them that imposes the second and more debilitating barrier. The child knows it is not receiving affection. He or she may attempt to avoid hugs and other demonstrations of affection because of autistic sensory disorder, but if the parents give up and withhold affection, do they really think the child is unaffected? Would you say a blind child was unresponsive and didn't need affection because he couldn't see his mother smile?
I am not a scientist, and I'm not an autism advocate. I'm a parent and a teacher with personal experience. My son is different. But my son is different because he has been raised differently, not because his autism isn't like textbook definitions of autism. My son is not a 'high functioning autistic', he is a normally functioning autistic. My son is what any autistic person can reasonably hope to achieve and has every right to expect. My son is what any decent person would want for an autistic person.
A change in attitude is the only accommodation that will really do any good. And it's free. There's not excuse not to have one.
~K~
At the broken cliff,
pebbles tumble down again,
a gathering of scree.
At thirteen my only son
still struggles with his letters.
My son is autistic.
Let that bald statement resonate a while. Dredge up all your stereotypes and media hype, 'Autistism Every Day' with the mother thinking about killing herself and her autistic daughter, about James McElwan, the autistic teenager shooting 17 points in the only varsity game he was allowed to play and being hailed a hero. Think about head banging, severely disfunctional kids, about the Rainman, about everything.
My son is different.
My son is a unique person who shares many of the challenges of other youths with autism, but the hype and the hopelessness, the extremes of autism, are not him.
Nowadays they label him 'high functioning' and diagnose him with Asperger's Syndrome -- as if the anguish of his childhood was somehow unreal, unimportant, and insignificant. As if nobody ever told me he was hopeless, that he would never be mainstreamed, would probably never speak, was mentally retarded, and would never hold a job or live independently.
As if it was 'easy' for him to overcome what must have been a 'mild' language impairment. As if we never spent a day consumed with six hours of tantrums. As if nobody had ever stood in line behind me at the grocery store, listening to him scream, saying, "If that was my kid, I'd smack him." A firm believer in non-violence, I was sorely tempted to turn around and tell that woman, "If you were my kid, I'd smack you."
I knew there was something wrong with this child when he was born. He slept too much. I was told he was a 'good baby' and we were lucky. He slept and slept -- a relief since his older sister had been colicky, but worrisome too. Late to his milestones. My partner's family kept saying, "He's a late bloomer. You worry too much." The pediatrician said the same thing. I tried to listen and be reassured.
At two and a half, I called Child Find. They came, saw him, and ventured to suggest he was mentally retarded. My ex went ballistic; that side of the family refused to accept that there was anything wrong with him and identified me as the problem.
We split up, I took the kids. We were in a shelter for a while, then a flat in an old house. We were desperately poor. I had my own disabilities to deal with, but I knew, absolutely knew, that the kids were better off with me. I accepted my children as they were and wanted what was best. I wanted to help my kids, not pretend everything was fine when it obviously was not.
To make a long story short, he was in pre-K, and the school wasn't helpful. They even asked to tie him to his chair to make him sit through Circle Time. I called a laywer, a very nice man who didn't charge me a dime to tell me what my rights and my son's rights were, and to advise us what to do. By the time my son was four I had gone through plenty of bureaucracy and a great deal of testing, and he was diagnosed with Pervasive Developmental Delay with Severe Language Impairment and Austistic Type Symptoms.
How's that for a mouthful? It's also some fancy footwork to avoid a diagnosis of autism. When I asked the psychologist why, when my son had 13 of the 14 classic symptoms of autism, he didn't diagnose him, he replied, "Autism is a throwaway diagnosis. I don't diagnose any child with it if I can possibly avoid it because the schools will shut him away and do nothing for him. They think it's hopeless, but I think your son can develop."
Let me give you a simple example of my son. As part of his testing, he was given a standard IQ test. IQ tests are highly language dependent. He scored a 50. Your dog would score a 50! When given a different, non-language based IQ test originally developed for Deaf children, he scored 120. With this we had a portrait of a bright young man who was deeply impaired.
The school did a 180. With his new diagnosis they put him in a classroom for students with Communicative Disorders. It was small, with a high teacher to student ratio. He had a wonderful teacher for two years, and a great speech pathologist, and then two more years with another great teacher. When he was first diagosed and I hoped that he could eventually be mainstreamed, they told me that was not a reasonable expectation. Yet in 4th grade he was placed in an academic class with reading support. He is now 16 and mainstreamed in all classes and slated to graduate in two years. Nationally, only 25-30% of children with autism graduate. He is a B student.
He was deeply language-impaired when he was young. When I spoke, nothing made an impression on him. If I had suddenly started speaking to you in Japanese, you wouldn't understand (unless you are a Japanese speaker), but you would realize that the sounds coming out of my mouth had meaning and were intended for you, and you would make an effort to find some way to communicate. Not my son. He ignored everything until he couldn't ignore it anymore, then he screamed. And because he also had perserverant behavior, once he started screaming, he couldn't stop.
At school they taught him 'Total Communication' which used everything to communicate: speech, sign language, pictures, pantomime, symbols, routine schedule, demonstration, etc. He learned how to sign 'more' and a few other words, and then, when he was four, said 'cookie.' However, he was unable to answer a question like, "Do you want a cookie?" He would simply stare at me.
In 4th grade, he entered with a barely second grade reading level. He did his reading homework dutifully. He set the timer as he was taught, and when it dinged, he stopped. Right in the middle of a sentence, paragraph, page, or story. He was not interested. I searched and searched, trying out many different books. I knew the key was finding something that he liked. Eventually, I found it: Japanese comic books. He loved Card Captor Sakura and Gundam Wing. The night we drove home from the bookstore with him reading in the car, holding up the book so the light of the streetlights fell on the pages, I knew we'd found the ticket. In fourth grade he gained two grade levels, catching up to his 4th grade reading level.
He is now not only reading at a grade appropriate level, he is taking Spanish in high school. He greets me with 'Hola, padre, como estas' in his emails or when I come to pick him up.
When this child was 6, and had few words, I some how made him understand that his beloved cartoons had 'voice actors' who got paid for the job of being the voices. Once he understood that, that's what he wanted to be when he grew up. I was in despair... how could this child with nearly unintelligible speech composed of only a few words possibly become a voice actor? But I didn't discourage him. His sister, who was 8, hit on the notion of turning on the close-captioning on the videos and making him read them out loud and act the parts. At first he only a knew a few words, but soon he could recite the whole thing, altering the pitch of his voice for male and female roles. (Memorized from frequent watching of the tapes, I suspect.) He was a perfect mimic. When he randomly produced a sound or statement, I could identify exactly what video, scene, and character it had come from.
When I say 'random,' I mean random. He would explode with sound effects (he adores them, especially farts and belches), and random statements that bore no relationship to the context. I was delighted -- it meant he was using his imagination. Previously, when he was little and showed no signs of imagination, I was deeply worried. To be blind or mute is a disability, but to have no power of imagination is be subhuman. But it was there, it just needed a means to express itself. Cartoons were it. Thus, he early on acquired a lasting nickname, "The Random Noise Generator." We're all very used to it, but we have to admonish him when we're in public places, like restaurants, that he needs to steer clear of bodily functions and turn the volume down.
I have seen the same behavior in other bright but language-impaired autistic children when I have been a substitute teacher and paraprofessional in the public schools. I encourage such behavior, although most people try to suppress it in favor of 'more appropriate' expression. Noooo! The child has found a way to express himself, don't squelch! Run with it! Give him a few years and his vocabulary and expressiveness, yes, even his social skills will improve. At the very least, he will become popular with other children. I cite my own son's experience as evidence. When his fellow students dubbed him, "The Living Cartoon" it was a measure of admiration and affection. Come on. What's wrong with making people laugh? Even in the middle of a test?
When my son was 12, he appeared on stage of the first time and read a story to little children, voice acting the parts. He OWNED the stage. No, it's not just me and my paternal pride. The Director of the program was sitting next to me and kept saying, "He has talent. He has charisma." Other children on stage were good, but there was a quantum difference. He took to it like a dolphin takes to water.
Less than a year later he got cast by the local community theater for a bit part in a playreading series. For this, the actors sat on stage and read the parts, voice acting them, then the audience engaged in discussion about the play and whether the company should stage it. Of the 16 actors on stage, he was one of the best. He was absolutely furious when adults far more experienced with himself muffed their lines -- he had rehearsed diligently for a month. They hadn't. He was so good that the technical director for the theater sought me out at work (I worked at the theater then) to tell me how good he was.
He continues to study drama in school and to participate in theater workshops. He loves comedy, especially physical comedy -- his first exposure to Charlie Chaplin had him laughing so hard he nearly fell out of his chair. He has had minor roles in other productions. After high school he plans to go to college to become an actor. He speaks clearly now and people meeting him for the first time often do not realize there is anything different about him.
He reached this by imitating cartoons. When he was in elementary school his educators complained about his 'stereotyped' behavior. I was delighted by it. He had gone from a child with no emotional expression who couldn't even say, "I'm hungry," to a child who had the vocabulary of cartoons to call upon and use to communicate. The gross facial exaggerations and extreme body responses and physical humor of cartoons suited him perfectly. As he slowly began to utter statements of his own volition, he repeated segments of cartoons and movies that served his needs. During this phase people thought him odd, but as his repetoire of movies and expressive ability expanded, he developed fluency and naturalness.
Unfortunately, if caught in a situation for which his cartoons or family has not prepared him, he doesn't know what to do. Three years ago I fell asleep while making dinner and the food burned, filling the house with smoke and setting off the alarm. I woke up, ran to the stove and dealt with it, then looked for him. I found him outside. He had been taught that when the fire alarm goes off, you leave the building and meet at the designated location. He had done exactly that. But all the time the house was filling with smoke, he continued what he was doing without reacting to it. Nobody had ever told him what to do if you smell smoke! I swiftly updated his education on that point! It also underscored to me that you cannot simply assume he knows something -- you must spell out every single little step. Once he understands it, he is reliable about performing it.
In another example, we usher at the community theater. I taught him how to read the seat numbers, taught him how to greet patrons, and explained to him that he needed to walk slowly so that old people could keep up with him. He practiced his lines diligently and did a good job. Patrons complimented him 'What a nice young man!' -- including the old lady who was once so offended by his poor table manners that he had been uninvited from volunteering at the theater for an extended time. However, when asked an unexpected question, like, "How long is the show?" he simply looks blankly at them. If you've dealt with autistic people, you know the look. The we-are-now-on-another-planet-and-you-are-only-vaguely-relevant-to-my-existence look.
I have been reading Reasonable People by Ralph James Saverese, recognizing much of my own experience, and being angry and rejecting much of what I also read. Don't get me wrong, I respect Savarese and think he and his wife have done a lot, and I concur with his liberal position on the need to truly serve the poor, the disabled, children, etc. DJ has developed a lot, and its due to the Savereses. My child wasn't abused and placed in foster care and bounced around from home to home.
But still...
And my experience is not just with my own son; I did a year teaching severely handicapped youth computer science, about half my students were non-verbal, several were autistic, and most were not literate. My experience with my son helped me get through to them. I'm not saying I worked miracles. What I'm saying is that I got them to achieve more than other people believed they could. The previous teacher had taught them about the Internet by taking them to a site online where they could color pictures. I taught them the basic structure of a network (by making them roleplay being workstations, routers, servers, etc, and passing a note around).
I taught them how to do a basic Google search for things that interested them. I had to spell out 'rollercoaster' and 'dogs' and 'Kenny Chesney'... but I caught one of my students shopping computer parts online to upgrade his computer at home. It took him a great deal of research, but he figured out what he needed, ordered it, and installed it. When he got the wrong part, he returned it and got the right thing. Guess what he was doing for a living? Pushing carts. You know the guys who go out into that grocery store parking lot and round up the carts? That's what he did. That's all he did. He didn't bag, didn't stock shelves, didn't sweep. He rounded up carts. Period. Because that's all they thought he could do. Because his verbal ability was low.
I have this radical notion: You teach the child you have. Not the child you wish you had. Not the child described in the textbooks and theories. As my Native elders (who have been studied even more intrusively and with less understanding that autistic people) told me, "Real life trumps theory every time." You teach them even if they don't speak, and you judge their accomplishments based on how well they do computers or art or or play volleyball, not on how well they use their voice.
You teach the living child right in front of you with their particular strengths and weaknesses. I believe, I truly believe, that every child can be reached. They can accomplish a lot more than they have been doing. Some of the students in my class were being warehoused and the aides paid no attention to them, having given up on them, but I tried to share my attention equally with all students and I did my damnedest to get through to them and I did. I'm not claiming miracles here. I'm claiming progress.
The single biggest and most important accommodation that we can provide a person with a disability is a change in our own attitudes. It's free. It's easy. It works.
By the end of that class I had every single student creating a short PowerPoint presentation to deliver to the class, voicing their slides themselves. Yes -- even my non-verbal students. They weren't very loud and their enuniciation wasn't clear, but they did it. Even the autistic girl who had started my class slumped against the wall, unresponsive, and staring into space. She watched the presentations by other students, was engaged, and eager to take her place at the projector to show her own slideshow. It took a lot of coaxing to get her to speak her slides and nobody more than three feet away could hear her, but she did it. The students loved it. They all cheered and clapped and were totally into watching each other slides.
The aides -- even the one who had thought it would be impossible to get these students to do PowerPoints -- were in the back, applauding and taking pictures. The program supervisor and a teacher from another class were in the back watching too.
Think of it. They'd gone from coloring online to making their own PowerPoints.
I got another job, working in the same building. At first my former students recognized me and greeted me when they saw me in the hall. Gradually, as time passed, they faded out, became blank, and stopped responding to my presence. Back in the same program, with the same low expectations, the same well-meaning but stupid teachers, and they slid back into the same state of apathetic, twitching, tuned out unperformance.
Gain requires reinforcement to retain.
Change requires commitment.
I love my son, but I don't think he's unusual. If you put him in the same place as those students, he'd be like them. Those students don't have to be the way they are, they can have more accomplishment, more pride, more independence.
I believed at the time I sought help for my son when he was very young that early intervention was important. Most children are diagnosed 'too late', meaning that they have fallen behind in school and developed a load of frustration that further impairs their fuction and which leads to behavior like tantrums and self-harm. These systems, the symptoms of frustration and anger, are then defined as part of the symptoms of autism.
Have you ever seen a giraffe self-harm? I have. And foxes and hawks and other animals too. I did a summer as a volunteer zookeeper at an inadequate rural zoo which shall remain nameless. The giraffes' pen wasn't large enough. They paced and the male in particular engaged in repetitive, perserverant behavior, including biting the other giraffes, banging his head against the barn wall, and other aggressive and self-harming behavior. He had to be kept separate from the other giraffes because of it. The fox, kept in her tiny cage, was pathetically eager for attention and play. She would run around and around, spastically, desperately, crashing into things. A hawk, likewise confined, picked out his own feathers, reminding me of my son picking at his scabs.
All these abnormal behaviors are things autistic children do, but these animals are neurologically normal. It is the environment that fails to provide them with enough space, affection, and attention that causes them to behave this way. Autistic people are different, but maybe many of the 'bad things' they do are not due to autism, but due to not having their needs met. People with autism are experiencing a kind of imprisonment in which sensory overload alternates with sensory deprivation. If a normal personal was subjected to alternating bouts of no sound and excessively loud sound, if people failed to relate to them and didn't have patience with them, if they were controlled and constrained the way autistic people are, they would develop similar behaviors.
In the case of autism, it is a disorder of the brain that imposes the first barrier, but it is the reaction and behavior of the people around them that imposes the second and more debilitating barrier. The child knows it is not receiving affection. He or she may attempt to avoid hugs and other demonstrations of affection because of autistic sensory disorder, but if the parents give up and withhold affection, do they really think the child is unaffected? Would you say a blind child was unresponsive and didn't need affection because he couldn't see his mother smile?
I am not a scientist, and I'm not an autism advocate. I'm a parent and a teacher with personal experience. My son is different. But my son is different because he has been raised differently, not because his autism isn't like textbook definitions of autism. My son is not a 'high functioning autistic', he is a normally functioning autistic. My son is what any autistic person can reasonably hope to achieve and has every right to expect. My son is what any decent person would want for an autistic person.
A change in attitude is the only accommodation that will really do any good. And it's free. There's not excuse not to have one.
~K~
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