Zebras and Giraffes – N24 Day 2015

Zebra meets giraffeToday, November 24th, is N24 Awareness Day, a day set aside for raising awareness of non-24-Hour Sleep-Wake Syndrome, a rare and serious circadian rhythm disorder that anyone can have, but that is more common among Autistic people and much, much more common among totally Blind people. This year, we have a theme: Think Zebras.

In medical school, doctors are told, “if you hear hoofbeats, think horses, not zebras,” meaning think of a common cause for the symptom picture that is presenting, not a rare cause. Rare conditions are meant to be diagnosed through a process of elimination, treating them as if they were common conditions and only looking further if the common treatment does not relieve the symptoms of what was presumed to be a common ailment, then the doctor can venture closer to thinking of zebras.

N24, especially in people who are not Blind, is an extreme zebra. We really don’t know how many sighted people have N24, but the National Institute of Health (NIH) has only studied two people with N24. Ever. Today is a day to bring more awareness of N24 to doctors and to the general public. It may be much more common than we realized.

I travel around the country and often have occasion to mention N24, especially since an article about it (featuring me) came out in Scientific American Mind last month. I have been shocked by how many people I have met who have strong signs of N24 or know someone with strong signs of it. It is the same story each time: the thrill of recognition, the surprise to learn that others have it a well, the strength that comes from a name, from knowing where to turn for more answers.

But I don’t just have a zebra (N24), I also have a giraffe (autism) and the two together get up to quite a bit of mischief.

Because I have learned that when a person has a giraffe, their zebra often becomes invisible. So many of the symptoms are dismissed as being just an unusual part of the giraffe. It can be really hard to get serious attention for a horse, even, let alone a zebra.

So if you can’t sleep well? Autism. Your stomach hurts? Autism. Your joints are loose and floppy and dislocate easily? Definitely autism. It’s like trying to get treated for depression while elderly. Because of the pre-existing giraffe, the zebra is not merely mistaken for a horse but becomes invisible altogether.

So if you or the Autistic you love (or the Autistic you treat as a patient) complains of some health issue, resist the temptation to discount it as part of autism and look more closely. Don’t let the zebras get away!


Happiness and Competence

dictinoary definition of competenceWhen I am asked if I am happy, I’m not always able to answer right away. Sometimes I have to sit and think a while, looking inward to see if I can find the answer. “Am I happy? Am I happy? What is happy?” Happiness is a little abstract to me. Sometimes it is pretty obvious to me that I am happy, but just as often I struggle to even understand what happiness is.

Competence, on the other hand, is more concrete and much more clear to me. When I have remembered to take the trash out the night before the garbage truck arrives, I feel competent. When I have cooked food without burning it and the resulting meal is healthy, tasty, and satisfying, I feel competent. When I cut my hair and the result looks good (or when someone compliments me on my cut and asks me who my stylist is) I feel competent. When I write an essay that people share with others and people tell me they enjoyed reading it or learned something valuable from it, I feel very competent. When I get up in front of an audience and speak about autism and field questions and feel strong and solid about the answers I am giving and am thanked afterward by others, I feel incredibly competent.

Victories, both large and small, can bring a sense of competence. Solving puzzles, reading a mathematical proof and being able to follow the logic all the way through, playing a musical piece without any errors, keeping a relationship healthy and thriving for another year, being able to hike farther on a trail than I did the last time, doing my laundry, not going to sleep with gum in my mouth, mending my clothing, having a non-confusing conversation with someone.

And, unlike happiness, I know when I am feeling competent. I often struggle with a mind-body disconnect that leaves me only vaguely aware, at best, what my emotions are. But competence is an emotion that sings out loudly and clearly. And when I feel competent, I know I am feeling happy. Maybe competence is one kind of happiness (I feel sure there must be more to happiness than simply feeling competent.) When I am feeling competent, I am feeling in control, confident, and happy.

I have had parents ask me to help me understand why their kid says “no” to everything — things the child doesn’t want but also things the child wants. I mean, quite literally, everything gets a “no” from the kid. As you can imagine, it’s really frustrating to the parent. There seems to be no solution, nothing to bring that child to “yes.” Even offers of the child’s favorite foods, favorite toys, favorite activities are met with resistance.

A child (or adult, for that matter) who is saying “no” to everything, even things that person might really like to have, is a person who is feeling out of control in their situation and trying to cling hold to the only thing in this world they are still able to control: their will. Your child is living in a world that is too loud (or not loud enough), that is too bright (or too flat and colorless), that is filled with wild and clashing smells. that is populated by unpredictable people who move startlingly fast and often reach out to touch in painful ways (for some of us, even the gentlest touch can be painful. For some of us, especially the gentlest touch can be painful!)

As Nick Walker has pointed out in his excellent definition of autism, the lived experience of autism is “more intense and chaotic” than the world appears to most non-autistic people. Walker writes that, “on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.” As you might imagine, living in a world that is intense, chaotic, and unpredictable is no easy task. Refusing everything is one way to assert some level of order and structure on a world that seems wildly out of control.

One approach a parent can take when their child starts saying no to everything like that is to help them experience feelings of competence. When a person feels like the entire world is out of control, they need victories and they need to be in charge of something. This can be difficult to address since typically a person who gets to the point of refusing everything is someone who has a lot of support needs and, as a result, has ended up in a position where just about everything is being done for them or done with minimal, passive input from them. How can you help someone in that position to get more control over their life?

One way to help someone who is unhappy with their lack of control and their struggles against a chaotic and unpredictable world is to help them increase their happiness and sense of control by helping them to increase their feelings of competence. You will have to start small, of course, but you can start anywhere and then build up from that point. What makes it tricky is that you will not be able to suggest anything as that will just get a “no” in response.  As with many things when it comes to raising, mentoring, and educating a child, it has to be led by the child themselves.

Start by choosing something that is not harmful or significant for the health and well-being of the person and that they have been fighting to get their way with for a while and give them their “no.” In fact, start by giving them every “no” you can spare. A person who has turned everything into a “no” is in crisis and getting them to feel safer, happier, and more competent is more important than a lot of the daily routine. So they miss a couple of baths and smell bad. So what? For a while, only insist on the absolutes and give them as many chances to take charge of their life as you can possibly give them.

Find other ways to help them discover more of a sense of competence and control. If they stack some blocks, don’t put them away too quickly. Let them savor their creation. The more you can give them space to take charge of their life and manipulate the physical world around them, the more you can make space for competence.

But don’t be surprised if skipping baths and stacking blocks is not enough. Examine their communication abilities. People often get frustrated when their communication abilities are lagging very far behind their communication needs. To move very far past that place where the person is refusing every single thing, you will want to help them find real control in their life and that cannot be found until they can communicate on a level that gets their needs met.

Never give up on helping Autistic people who need and want to increase their communication. Try every method. Offer every opportunity. Communication is such a fundamental need (and such a fundamental human right) that it is the cornerstone of competence and happiness. And competence and happiness are the cornerstones of a life well-lived.

I have a weekly newsletter

I have a weekly newsletter now. The second issue of it comes out Thursday morning. Issues will be archived on my website but with a lag time. One reason to sign up is that I announce upcoming speaking engagements in my newsletter so if I’m going to be in your area you might never know unless you sign on.

I am also including exclusive content in the newsletter. Tomorrow’s issue includes a movie review and a long and detailed description of what it was like for me to grow up with hyperlexia. I will continue to write blog entries here, but I am running an “advice column” in my newsletter, so if you had questions you wanted addressed (your anonymity is encouraged and protected) you definitely want to sign on to the newsletter and join in on that interactive feature.

If you’d like to sign on to the newsletter, you can find a sign-up form on the main page of my website: http://www.sparrowrose.com

Thank you!


When Is It Okay to Chain Your Child to a Bed?

chain with padlockThe answer should be obvious, right? Never. Never is it okay to chain your child to a bed and leave him alone, crying out for someone to give him water.

This is what happened in Australia where a mother chained her 16-year-old Autistic son to the bed and left him there alone while she went to the store. If you are upset for that young man, good! You should be! I’m upset on his behalf but I’m also upset and disturbed that, once again, I witness the trend of empathizing with the abusive parent and virtually ignoring everything about the child.

The Facebook administrator for Autism Awareness Australia gave mere lip service to the suffering of the young man and focused most of the spotlight on the mother:

A horrific story…..for everyone involved. Whilst no parent should do this to their child, we can only imagine the desperate situation this woman must have found herself in.

This is a time for compassion not condemnation. This mother must have felt so isolated, let’s not isolate her further.

This is yet another case of the appalling lack of services across Australia. Surely we can do better.

We will be appearing on Sunrise on Channel 7 at 7.15am to discuss.

This was the opening volley in what has turned out to be a war of words between, on one side, Autistic adults and parents who feel compassion toward their Autistic children and, on the other side, parents who probably love their Autistic children very much but feel that it is more important to protect the mother in this case. One can’t help wondering if they feel so strongly about protecting the mother for fear that they, too, will one day be caught chaining their child up….or worse.

Some of the people defending the mother’s actions pointed out that the news article said that the teen had run out of the house naked on several occasions. I am stunned that anyone would consider that a valid defense for chaining a teen to a bed and leaving him alone without water. As activist Kassiane S. of Radical Neurodivergence Speaking pointed out in the Facebook discussion, “There was an Autistic girl in the united states whose parents chained her to a bed, because just like these parents they were abusive wastes of carbon. Her name was Calista Springer. notice the past tense. Calista Springer died in a house fire, because her abusive waste of carbon parents CHAINED HER TO AN EFFING BED and then the house caught fire.”

The case of Calista Springer is a concrete example of why it is so heinous to chain an Autistic teen … hell, to chain anyone … to a bed and leave them there helpless. Calista paid the ultimate price for the abuse she was put through. Chaining a person to a bed is abuse. Chaining a person to a bed can kill them. If a person dies because they were chained to a bed, the person who locked them there is guilty of manslaughter but should be tried for murder in my opinion. The Springers were charged with felony murder, torture, and first-degree child abuse and convicted of the latter two charges while the murder charge was dropped.

Calista was held to her bed in the Springer’s Michigan home with a dog’s choke chain wrapped around her waist and the door to her room was locked with a deadbolt on the outside when the house caught on fire from a malfunctioning vacuum cleaner while only Calista and her mother were home. Mrs. Springer escaped the house but left Calista trapped where she died from smoke inhalation on February 27, 2008. Mr. and Mrs. Springer were sentenced to 35 to 65 years and 27 to 65 years respectively. That is how serious the crime of chaining up a child and leaving them helpless is. That is how serious this recent Australian case is.

Yet Autistic adults were chided to stop “conducting a court of public opinion” and wait until “all the facts are in.” Could there be any facts that justify chaining a teenager to his bed and leaving his alone and thirsty? It frightens me that any parents would feel it is more important to be gentle with a mother who would commit such an act against her own child than it is to be concerned about the well-being and ongoing welfare of the young man to whom such things were done.

And to defend these actions by pointing out that the young man ran outside naked? Yes, that is a problem but it is a very small problem compared to the massive human rights violation of unlawful imprisonment.

Nearly thirty years ago, my friend’s son used to run outside with no clothes on. He did it often. If you turned your back for a moment, he had stripped off his clothes and made a dash for it. I tried to help his mother, but even two adults weren’t enough to keep him clothed. Should his mother have chained him to the bed, vulnerable to dying in a fire?

No, of course not! She would have been deeply offended if anyone had seriously suggested it. As a result, her son grew up and now he works as a forest firefighter. Calista Springer perished in flames; the Australian teen was vulnerable to perishing in flames; my friend’s son saves many lives by extinguishing flames.

The difference? My friend’s son is not Autistic. And you know what? That shouldn’t make one bit of difference! In a truly just world, in a world of autism acceptance and understanding, in a world where people regard all others with respect and afford them the dignity all humans deserve, being Autistic would not be a death sentence. Being Autistic should not mean that other people — people with children much like you — are eager to justify your torture and defend your jailer by pointing out that you took off your clothes.

We, as a society, pat ourselves on the back for institutional reforms. We talk about the bad old days when mental hospitals put patients in cages and chains. We convince ourselves that these are the good new days when human rights are respected. But opening the institutions to the light of scrutiny and the fresh air of public concern has not stopped the violations. It has only shifted the location of these infringements to the homes and classrooms of some of our  society’s most vulnerable members.

Autistic children and adults are chained in bedrooms, locked in basements, left to languish and starve to death in attics. Autistic schoolchildren are locked in cupboards, sealed in duffel bags, handcuffed by the police for kicking a trash can. Have we made progress since Willowbrook? Yes. But the progress we have made is miniscule in comparison to the distance we still need to cover. We have emptied the snake pit but we have not eradicated the snakes. They have slithered out into every corner of society and we must name and acknowledge abuse and murder when we see it.

When we erase Autistic people from their own murders, we are feeding the snakes. When teachers can abuse Autistic students without consequences, we are feeding the snakes. When people feel the need to defend the murderers by saying the victims made them “snap,” we are feeding the snakes. We do not have the right to pat ourselves on the back for closing down the snake pits when we continue to feed the snakes.

So . . . when is it okay to chain your child to a bed? When they are Autistic? No. When they run outside naked a lot? No. When they have strong reactions to things or people in their life that include responses like hitting or biting? No. When you are really tired from/of taking care of them? No. When you don’t have services or support? No.

Like I said, it’s obvious … or at least it should be obvious. It is never okay to chain your child to a bed. There are no facts that could be later revealed to justify it. There is no exhaustion or lack of services that can rationalize it. It’s just not okay and if that wasn’t obvious before, I hope I have helped to make it a little more obvious to you. It is not okay to abuse or kill your children and it is not okay to say that it is “understandable” or to erase us from our own stories or to call a murder “understandable” or a “mercy killing.” And just in case I was not crystal clear:

It is never okay to chain your child to a bed.

Paul K. Longmore

Paul K. LongmoreI have many heroes, living and dead. These are people who are role models to me, people who have changed my life for the better and motivate me to work to change others’ lives for the better in return. Paul K. Longmore is one of those people who have paved the way for me to have a fuller and more fulfilling life. Longmore worked to make the world a better place for disabled people and his work has had a direct influence on my life. One reason I work so hard to make the world better for other disabled people is so that I can pay forward the great debt I owe Paul K. Longmore.

I learned about Longmore’s work shortly after I self-published my first book, No You Don’t: Essays from an Unstrange Mind. I had worked hard to write my collection of memoir-flavored essays about my lived experience of autism and my hopes for the children currently growing up Autistic. Not only did I write, revise, and edit all the writing, but I laid out the typesetting for the print version, designed the cover, and created the Kindle version. I spent many hours in front of a computer tweaking images by a pixel here or a pixel there and shuffling words around to prevent awkward widows and orphans (isolated bits of words at the top or bottom of a page, disrupting the visual flow of pages.)

The book released very successfully, considering what a small fish I am, and I dutifully reported my income from it. Social Security rules for earnings while living on SSI are designed to help disabled people transition from living on benefits to being self-supporting. A small initial amount is exempt and then SSI is reduced fifty cents for every dollar earned. So I expected my checks to be reduced by a small amount, but imagine my shock when my checks were slashed so dramatically that I couldn’t pay my rent any more. (I had already spent the royalties I’d received in that first burst of sales on life necessities, assuming that I would still get nearly a full SSI check later.)

When I contacted the Social Security Administration (SSA) about the problem, it turned out that they were considering my income under the rules for “unearned income.” These rules are more draconian: one’s check is reduced dollar-for-dollar. This is why I never bothered to go get utility assistance: if an agency gives me money to pay my winter heating bill, that money is unearned income and my SSI check would be reduced by the exact dollar amount two months later. So all utility assistance does for a person on SSI is shuffle their expenses but it doesn’t actually help them in any way.

It took me months to straighten out my money situation with Social Security and I am grateful that my landlord worked with me during that time because otherwise I might have become homeless in the middle of the battle. The SSA was applying the rules for royalties that come from things like mineral rights. If you are on SSI and strike oil on your property and sell that oil to a corporation, the money you are paid is called royalties and it is considered unearned income. I have no problem with that, because selling mineral rights on one’s property doesn’t require a lot of effort on the seller’s part and the oil that is pulled out of their land is worked by someone else. That income pretty much is unearned.

But the royalties that come from a creative work of art are different. As I said, I worked hard for a long time to put that book together and I continue to work all the time to market that book. I continue to work, writing more essays and books and promoting them in various ways. The royalties I earn from my book are, indeed, earned. I haven’t yet earned enough royalties to compensate at minimum wage for the hours I put into creating the book. My task was to prove to the SSA that I had earned that money and deserved to have my income considered under the earned rules instead of the unearned rules. And when I set out to do the research to prove my case, that’s when I discovered Paul K. Longmore.

Longmore was a history professor and a disability activist. In 1953, at the age of seven, Longmore developed polio and lost the use of his hands as a result. He needed expensive medical care for the rest of his life, due to post-polio syndrome, and so keeping the medical benefits that come with Social Security disability was very important to his survival.

Longmore wrote an award-winning book, The Invention of George Washington, by holding a pen in his mouth and using it to type on a keyboard. It took Longmore ten years to write his book. I do not tell you of his writing process and the length of time it took him to write as some sort of inspiration porn. I tell you because it underlines how much the royalties from his book were earned income, not unearned in any sense of the word. Longmore worked hard on his book and it is a highly regarded book in its own right.

But the SSA did not share this view and Longmore was suffering as a result. The fact that they took away every penny he earned was bad enough, but he could not accept awards for his book if they included a cash prize and his healthcare coverage was at risk. Longmore burned a copy of his book on the steps of the SSA main headquarters in Washington, D.C., an act of protest that he wrote about in an essay included in his collection, Why I Burned My Book and Other Essays on Disability.

Longmore’s protest and subsequent lobbying lead to a change in the late Eighties to the SSA rules governing earnings from creative works, colloquially known as the Longmore Amendment.

This is just the beginning when it comes to learning about Dr. Longmore’s contributions to disability activism and I highly recommend reading his books and learning more about his life. Sadly, Longmore died unexpectedly in 2010 at age 64, but his legacy lives on. He is one of my heroes and I think he will become one of yours as well. Thank you, Dr. Longmore, for fighting for our rights.

When I took my information to the SSA — information about the change in rules and direct citations from the SSA’s own rulebook — my meeting was almost anti-climactic. My caseworker barely looked at my evidence and changed my earning status with no fight at all, treating me as if I were engaging in overkill by bringing in documentation (despite the way I had been treated earlier without documentation, even to the point of being lectured that SSI is “need based” as if I shouldn’t even want to have a higher income let alone have a right to work for a higher income and a chance to transition off benefits, becoming self-supporting.)

My reception was irritating, but I got over it pretty quickly when I saw the results: I don’t have to report my income month-by-month. Every year, I submit my tax returns and estimate my next year’s earnings. My check is adjusted annually, based on projected earnings. I am free to focus on working hard to build my business of writing, speaking, and trying to help shape a future world that has a place for people like me.

I owe much of my continuing success to the work of Paul K. Longmore. I hope my work pays tribute to his memory. He is one of my heroes and role-models. Thank you, Dr. Longmore, for fighting for all of us disabled folk who are trying to build careers and touch the future through our work.


Award-winning History Book!

Welcome to November, Autistic History Month.  How appropriate it is that Steve Silberman’s book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity, has just won the prestigious Samuel Johnson nonfiction prize.

Silberman’s ground-breaking book discusses the history of autism, including little-known details of the earliest days of the diagnosis. Silberman ferreted out previously-unknown information that turns contemporary ideas upside down. I had long known that Dr. Asperger and Dr. Kanner were not really describing a different condition — both labeled the cluster of traits “autism” and both doctors were studying patients from a wide range of autistic expression, from those who need a great deal of support to those “little professors” who, despite being disabled as well, often fly under the radar. In other words, there is no significant difference between “Asperger’s” (as described by Dr. Asperger, not necessarily as described in the DSM-IV) and “Kanner’s autism.”

Silberman discusses this phenomenon in much greater depth than I had previously been aware, however. I knew about Donald Triplett, the first person ever diagnosed by Dr. Kanner. Triplett still lives in the town where he grew up. Although the townspeople are aware of Triplett and shelter him a fair bit, he is also quite independent. This Atlantic article mentions that Triplett drives his own car and plays golf. Donald Triplett would seem to match up with Hans Asperger’s description of autism.

What Steve Silberman revealed that I had not been aware of before reading his book was that Dr. Asperger was studying patients who required a great deal of support — much more than indicated by the DSM-IV description of Asperger’s Syndrome. In other words, both doctors were looking at children from all over the autism spectrum. Both doctors were studying a cohort of children nearly indistinguishable from the cohort the other doctor was studying. Both doctors recognized that the state of being they called “autism” had a wide range of expression. Neither doctor contributed to a compartmentalization of “types” of autism.

So why is there such division today? Silberman’s book addresses that issue (and so much more. If you haven’t read Neurotribes yet, you really must!) I can’t even begin to do Silberman’s recounting justice in this synopsis. Asperger downplayed and hid his subjects who required more support because he was working in Nazi Germany where disabled people were called “ballast” and “useless eaters” and sentenced to death. Fearing for the lives of the patients he had grown quite attached to, Asperger promoted the “little professor” subjects, emphasizing their intelligence, potential future productivity, and usefulness to the Nazi regime. This is why we have come to associate a particular set of traits with the label “Asperger’s Syndrome” to the point where one might sometimes wonder if a race of ubermensch were being described.

The greatest surprise of all however, was the connection between Asperger and Kanner. Silberman dug deeply into historical documents in one of the greatest academic detective stories I’ve seen in a while. As it turns out, When Asperger’s clinic was bombed and his workers were scattered, many of them went to work for Dr. Kanner in America. Evidence strongly indicates that Dr. Kanner named the condition he was studying “autism” because his employees told him that is what Dr. Asperger had called it.

The history of autism is not a path of parallel discovery like Newton and Leibnitz with the calculus. It is a single path of discovery that began with Dr. Asperger and was taken up by Dr. Kanner (who chose to take credit for the discovery of autism rather than share the credit with his overseas colleague.) Kanner, however, emphasized the patients who needed more support. He emphasized them to such an extent, in fact, that the understanding that autism is a spectrum was lost for over four decades.

Thanks to the hard work and award-winning writing of Steve Silberman, the historical understanding of the autism spectrum is getting new attention. The history of autism could revolutionize the future for Autistic people. Thank you, Steven Silberman. Thank you so much.

Who Do I Speak For? – Autistics Speaking Day 2015

Autistics Speaking Day LogoIt’s the first of November again and that means it’s Autistics Speaking Day. Autistics Speaking Day has been happening every year since 2010, steadily gaining attention and this year I heard a criticism leveled at the annual event.

A parent of an Autistic child declared that the event is mis-named and should be called “Autistics Speaking for Themselves Day” because she wanted to make it clear that those of us who are able to write about our Autistic lives and experiences are not like her child. She presumes that her child will not grow up to be someone who can write about their life and apparently presumes that none of us were ever like her child when we were very young, too.

I’ve written before about the insult and injury of assuming that adults with various competencies are not in any way similar to children still learning basic skills. Today I want to talk about who I write for. It’s an important question — the mother who complained about Autistics Speaking Day wants to make sure everyone knows that we are not speaking for her child.

I do speak for her child. I speak for all the children.

Let me unpack that a little bit. Of course I speak for myself. We all can only speak for ourselves and I am careful to try to remind readers that I am giving my perspective, based mostly on my experience, though also seasoned with the experiences others have shared with me as well as the scientific research I read. My words are drawn from many sources but in the end it is only my own lived experience of my own Autistic self that I can ever share as a true insider. I can never be inside someone else’s Autistic self.

I sometimes gripe about the title of the book Inside Asperger’s Looking Out because the author is not Autistic and cannot write about Asperger’s from the inside. Hoopmann writes, “Not having Asperger’s, this book took a lot of research and I listened to hours and hours of Youtube videos by Aspies, and joined online Asperger sites to get their insights.” While I admire her industry and dedication, the author had no right to title her book “Inside Asperger’s.” That is a type of “speaking for” others that I find offensive. For example, while I strive to support the needs and issues of Autistic People of Color I would never say I have the inside story about being Autistic and a Person of Color.

So what do I mean when I say I am speaking for others? There are different definitions of the phrase “speak for.” One definition, according to the American Heritage Dictionary, is “to serve as an official delegate of; represent.” I can’t do that. I cannot presume to be any sort of official delegate for others, particularly children I have never met. And there is no way that I speak in any official capacity for People of Color when I try to draw attention to issues they have already declared to be important to them. When I say I speak for someone else, I mean I am trying to help them achieve their own goals and trying to avoid talking over them. I am trying to help amplify their voice. In some cases, I’m trying to make people aware that they even have a voice and should be listened to.

I am not speaking “for” others, meaning “in place of” others — as in “applesauce can be substituted for eggs in your baking.” I cannot speak for children that way and neither can their parents, their doctors, or their teachers. I am not a substitute or proxy for anyone.

I am speaking “for” others, meaning “on behalf of” others — as in “many Autistic children don’t have the language skills yet to tell you what they are experiencing, so I am telling you what my childhood felt like. I did not have the language skills to explain these things when I was a child, either, so I am telling them now as memories, for those who are currently experiencing similar things in their lives.” I am not inside their heads. I cannot know exactly what they are thinking and feeling. But I can explain how I felt and maybe it will help family to get a possible glimpse inside what a child’s inner life might look like. I speak for the Autistic children.

I am speaking “for” others, meaning “in favor of ” others. I speak for truth. I speak for beauty. I speak for my fellow Autistics. I promote them to others as valuable, worthy human beings. I am in favor of them being respected and treated with dignity. I support them. I try to encourage them. I speak for them, every chance I get. I chastise those who speak against them. I speak for the Autistic children.

I am speaking “for” others, meaning “toward a recipient or beneficiary of an action.” I speak for others who need to hear the message of their beauty. I speak for others who need to be reminded of their deep, intrinsic value. I bring inspiration and validation to people. It is them I am speaking for. I speak for the Autistic children.

I am saddened when a parent seems to feel threatened by my speaking for their child. Don’t they want another ally on their child’s side (and, by extension, on the parent’s side as well)? Don’t they want someone from the same neurominority as their child to help them gain more insight into what it is like to live a life “differently brained”? Couldn’t I help them avoid my pitfalls by sharing them? Can’t I help give parents insight into one of the many ways a child can turn out after being someone who crawled on the floor and hid under tables and bit others and generally made their teachers dream of retirement? I have so much to offer and, if nothing else at all, I am an adult who will not judge a parent unworthy if their child is Autistic . . . because I am not judging the child as unworthy, either!

I am an adult who cares, who has a special fondness for your child before ever having met them. I am an adult who wants to help. I am an adult who wants to be a supportive force for good in your life. I just don’t understand why so many parents reject that.

Don’t be angry that I am speaking on Autistics Speaking Day (and every day.) Don’t demand that I never speak for your child. I am only speaking a message of love, acceptance, support, and validation. What parent doesn’t want those things for their child? I am speaking for your child. I beg of you to embrace that, on your child’s behalf. Together we can speak for your child and recruit even more voices along the way — including, when they’re ready, your children themselves! We will get the world to listen to us!

Yes, I speak for myself. But my real satisfaction comes from speaking for the Autistic children. I love them and want them to have every good thing in this world. They will only attain that if we all speak for the children. Every day we have the opportunity to change someone’s life for the better, forever. I speak for the children and I will not stop so long as we live in a world that doesn’t listen yet.


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