Yesterday I was targeted by someone whose name I am not going to divulge because doing so will only further engagement and unnecessary dialogue. I am going to keep this about my reaction to being attacked and will not engage in a counter attack. One of the things I have learned over the years is that when someone attacks, my knee jerk response is to attack back, but this never actually does anything to further the conversation, encourage discussion or an exchange of ideas. Nothing changes when two people angrily engage in self-righteous, self-justified shouting matches. So why do it?
Sadly, within any community, positions are taken, an “us” and “them” mentality which serves to separate each other from the very people we appear to want to engage. I do not completely understand this desire by some to engage others with their anger. However I do know first hand the feeling of frustration when I have believed something and had those beliefs questioned, judged or argued with. When someone says with absolute conviction that they know for a fact that a certain therapy, treatment or way of supporting another does or does not work, I figure it’s worth investigating. I do my best to look at the pros and cons, I try to read the various scientific studies, the anecdotal stories, and control studies if there have been any. I take into account how many people were used in the study, I look at who conducted the study and whether there were any conflicts of interest in the study’s results. I read any controversy surrounding the therapy.
If I know someone personally who is using whatever the therapy, treatment or support is, I reach out to them, ask them questions and observe. If what I am observing counters the conclusions of some of the scientific studies done, I take that into account and look at why that might be. Beyond wanting to do what will prove best for my daughter I try to remain open to both sides. However, if a number of Autistic people have PTSD because of a particular therapy or speak out about it with their reasons why, I listen to their accounts and place more weight in their experiences than I do in studies conducted by neurotypical “experts”. I also listen to those who are Autistic and have found something particularly helpful, even if many neurotypicals suggest otherwise.
These are the things I do. Others may have different approaches, but this is what has proven most helpful for me. When someone then attacks me for doing a particular therapy, treatment or support with viciousness, it hurts, but it does not make me change my opinion, in fact it does the opposite. When someone personally attacks me with sarcasm, condescension and aggression it serves to make me wonder why they would do so. When they then back their vitriolic, venomous statements by saying that “science” is behind them and that I cannot possibly have read the studies they cite, when they dismiss opposing studies as being “shoddy” and “poorly” done as non-science or “pseudoscience”, there is no point in responding. When they then further their comments by saying that I am being “unethical” and suggest that by engaging in such support I am hurting those who cannot speak by putting words in their mouth, it crosses the line of being about ideas, opinions, science or anything else, it is a personal attack.
I come here day after day and share my thoughts, feelings, views. I try to be honest, above all else and in doing so open myself up to attack. I know that. I cannot do this any other way. I am vulnerable in a way that those who attack me are not. That’s okay. No one is forcing me to write a blog or to be as honest as I can be. These are the decisions I’ve made. I try hard to keep my side of the street clean, as they say. Some days I’m more successful at that than others, but I always keep showing up and trying as best I can. In the end that’s all any of us can do.
Unrelated photograph taken Christmas Day on the ranch
Last night I spoke with my brother by phone. He is unable to travel. His voice was so raspy, his breathing slow and labored, had I not known it was my brother I was speaking to, I would not have been able to guess from the sound of his voice. He wasn’t able to complete a sentence without pausing to take a breath. It was clear listening to him that the act of talking was incredibly difficult and painful. When we said good-bye to each other I was overcome with emotion.
My brother is very slowly recovering from pertussis, more familiarly known as whooping-cough. Because so many parents have chosen not to vaccinate their children for fear that vaccinations cause autism, whooping-cough is on the rise. I’m including some links ‘here‘ and ‘here‘, for those of you who may not be aware of just how serious and deadly whooping-cough is, not just to our children, but to teenagers and adults too. This is the other side of not vaccinating, the side so many do not consider. People of all ages are getting sick and even dying of diseases most of us assumed had been eradicated long ago. Whooping cough, once unheard of, is now on the rise. In my brother’s case, his coughing was so extreme he would vomit, was unable to breathe and speaking became impossible. Fortunately he is slowly getting better, but whooping-cough can take more than three months to recover from, for those lucky enough to recover at all.
My children are vaccinated. I am vaccinated. I have had moments in the past when I wondered if there was a connection between vaccines and autism. I never believed vaccines caused autism, but I did wonder if it exacerbated pre-existing conditions. I no longer wonder because I stopped fearing autism and listening to those who would have us fear it and those who are Autistic. And it seems this is what it comes down to. When we fear “autism” so much that we are willing to put our child’s life at risk because of those fears, we must, as a society, look at what we are saying and believing. Organizations intent on fueling those fears for monetary gain are being dishonest with themselves when they refuse to see the connection. Adults, teenagers, children and babies are dying from preventable diseases because of people’s fears regarding causation and vaccinations.
When a parent makes the decision to not vaccinate their child they are not just putting their own child at risk for developing life threatening diseases, they are putting all of our lives at risk. It’s important that we are clear about this. None of us live in a bubble no matter how careful we might believe ourselves to be. The decisions we make affect more than just ourselves and our families. The decisions we make have larger ramifications that impact everyone we come into contact with.
For those of you on the fence regarding vaccinations – I understand the dilemma. I understand how difficult it is. I understand how debilitating fear can be. Really I do. I’ve felt it. But in the end your decision comes down to this – are you willing to put not only your child’s life at risk, but your own and every person’s life you come into contact with?
Completely unrelated photograph taken yesterday of the rocky mountains
Someone spent time creating this page on Facebook… no one stopped them until countless people had seen it.
This page has now been removed. I post it here because the hatred, the sheer toxicity and venom that the person who created this page had to have felt to create this page is what so many of my friends and I have worried about and feared. This screen shot sums up so much.
I have spent several hours writing and deleting my thoughts on this. I have decided I cannot write anything more because I have no words. I have nothing to offer.
I used to work at an ad agency. One of the first things I learned was that there is one emotion that motivates people more reliably than any other. Fear. Fear compels people to do a great many things they might not otherwise do.
Once we’ve become convinced that something is worth fearing it is extremely difficult to reverse. When we speak of Autism using words and phrases that cause us to fear Autistic people, we are doing tremendous harm in the short and long-term to that population, harm that will be very difficult to reverse. Convincing people to feel fearful about something or someone is one of the easiest things to do. Convincing them, once they are convinced, that it was all a “false alarm” is extremely hard. So when those first news reports came out linking Aspergers with the shooting at Sandy Hook Elementary School, it only took an unethical few to do tremendous damage to an entire population of people. Despite the fact that if you google “Aspergers and violence” the first dozen pages that come up are articles stating that there is absolutely NO connection between Aspergers and violence. And yet, my Autistic friends and I are terrified.
I am frightened for my Autistic daughter and for those I love and care about who are Autistic. I am frightened by what people will assume and how they will then treat those they assume are Autistic. I am frightened for my friends who are Autistic, will they be safe? Will a non autistic person hurt them, say cruel things to them, treat them differently because they fear “autism” and therefore “Autistics”? I am frightened even though the truth is neurotypical people are far more likely to commit acts of violence than Autistics. Watch these videos on Youtube ‘here‘ and ‘here‘. Videos showing Autistic and disabled people being tortured by others. Read these reports ‘here’, ‘here‘, ‘here‘ and ‘here‘ about the systematic abuse of Autistic people, abuse that continues unabated all the time.
It is WRONG to condemn a group of people, people who have suffered at the hands of those who now accuse them, a people who have been marginalized, some of whom cannot defend themselves because they do not speak and have not been given the means to communicate effectively through any other means. It is important that you know. It is important that you understand the ramifications of connecting autism with murder. I want you, no, I need you to understand why the words we use, the constant stream of negativity in relation to autism is causing untold damage to my daughter, to your daughter, your son, your Autistic child, to their futures, to the people I love, to my friends, to all who are Autistic and have had to deal with exactly this kind of prejudice their entire lives. It has to stop. It has to stop.
Children were killed, murdered. The horror is unbearable. But to add to an already heinous act by targeting a group of people and making it about them instead of what has happened, is adding more pain and agony to more children’s and people’s lives. Innocent people. Innocent children. Don’t we see that? Can’t people see we’re making it worse? We aren’t ensuring our children will be safe with these beliefs. We aren’t making the world a better place with more prejudice, bigotry, false assumptions, and our fear. Our fear is what drives us to conclude that we are fighting a false enemy. Our fear is what compels us to hurt, lock up, institutionalize, condemn and torture. Our fear is what causes us to commit acts of violence against those we’ve deemed violent. Our fear…
If I don’t immediately take notes during and after my typing sessions with Emma, I would wonder whether the words she typed were a figment of my imagination. There is something almost magical seeing and reading the words typed from someone who does not, or does not easily, communicate with spoken language. It reminds me of the time I went to a lecture given by Soma Mukhopadhyay with her autistic son, Tito who began answering questions from the audience. Tito is non-speaking and has a great many stims, yet translates his beautifully eloquent, poetic thoughts into words and has no problem answering any question posed. It’s often a disconnect for the neurotypical person watching someone who isn’t able to verbally say what they are thinking, yet has no trouble writing their thoughts, which in no way match the presumptions we, NTs tend to make. If you’ve never witnessed something like this, it can be pretty mind-blowing, which says more about the limitations of neurotypical thinking and the constraints we unintentionally place on others who seem different from us than anything else.
Last night I began Emma’s session with a question. It’s the same question I always ask her. “Hey Em, how about after you sing this song we do a typing session together?” And Emma answered, as she does every time I ask her this question, “Yeah! Typing session with Mommy!” Emma’s excitement, in and of itself, makes me incredibly happy. That she’s interested and (I think) looks forward to our sessions as much as I do, makes me believe we are on the right track. When we went into the room, now dubbed, “Emma’s office” I tried to think of a question it seemed likely Emma would know the answer to, but that if she typed it out, I would be surprised. As we are leaving soon to visit her Granma for the holidays, I said, “When we fly to Granma’s we have to first take a taxi to an airport. What’s the name of the airport we usually go to?” Without hesitation, Emma typed, “La guardia”. Wow! Just wow! I then asked, “There’s another airport near La Guardia, we don’t usually fly out of, but what’s the name of it?” Emma, again, without hesitation, typed, “kennedy”. Whoa! Then I threw her, what I thought would be, a curve ball and asked, “When we fly out of La Guardia we always take the same airline to visit Granma. What’s the name of the airline we always take?” Emma wrote “United”. EEEEEE!!!!! Snoopy dance. Give me a moment while I hyperventilate. Whooooo, whooooo.
Emma went on to tell me what state and city we live in, the name of the state we were flying to and when I asked, “What’s another name for the city we live in? It starts with an M?” Em immediately typed “Manhattan” though she forgot the h and one of the ts. I followed up with, “And what’s the neighborhood we live in?” Emma, again without hesitation, typed, “Chelsea.” Taking another deep breath. For those of you who are doubting what I’m writing, I understand. Really. I do. As I wrote above, I actually had to take notes during our session, because I knew I would come away as if in a dream. (Ibby suggested I record our sessions together and I keep forgetting to do that, but I have to remember to from now on.) That’s what it feels like, a dream. I absolutely believe in my daughter’s competence. I believe she is far more competent than most people who come into contact with her do. I do not for a second doubt that she has a busy, complicated and fascinating mind, filled with thoughts, ideas and knowledge I can only guess at. But to know this, to believe this, is different from being shown this. I don’t mean to offend any of you reading this who are non-speaking and communicate by typing. I don’t mean to offend, really I don’t. I hope that were Emma to ever read this she will understand what I’m trying to say. This is not about Emma’s limitations, either intellectual or otherwise, this is about my own.
For all you neurotypicals who can speak, humor me for a moment. Think about how you would feel if you could not speak. Think about all the things you know, but couldn’t say. Now imagine if you were told something simple, like the city and state where you lived over and over, repeatedly, day after day. Just think about this for a second. Close your eyes and try to imagine what it would be like to not be able to speak. Imagine that well-meaning people tried to help you speak through repetition and you were not allowed to move on until you were able to say these things being “taught” aloud. Imagine how you would feel were you never able to say these things, so you weren’t allowed to move on. It was assumed that because you couldn’t say them, you must not KNOW them. And yet, all this time… all this time you really did know these things. Not only did you know these things, but you knew so much more. But no one believed that you did. No one treated you as though you did. Less than a year ago I assumed Emma did not know. Less than a year ago I assumed Emma did not understand.
During my supported typing session with Emma Saturday evening we discussed Little Red Riding Hood. I asked Em what she thought Little Red was bringing Grandma in her basket. Emma typed “blueberries”, which seemed like a terrific guess, particularly as Little Red could certainly have picked them herself, placing each blueberry in her basket as she made her way toward her Grandma’s house. We discussed the wolf and I asked questions I thought it likely Em knew the answer to, but that I wouldn’t expect her to answer verbally, just as Pascal, who is helping me, advised. Eventually I asked, “Em, what would you do if you were asleep in your bed and woke to see the big bad wolf?” To which Emma typed, “I would go to the three little pigs house”. Though she paused after she’d typed, “I would go to the”. I urged her, “Take your time Em. Write what’s in your head.” She looked at me and whispered, “three little pig’s house.” She then typed the rest of the sentence with me. “I would go to the three little pigs house.”
I looked at that sentence. It took me a second and then I laughed and said, “Wow Em. That is such a great idea!” After all the three little pigs have had run-ins with the wolf. They know, better than anyone, how to deal with him AND they figured out how to build a wolf-proof structure after much trial and error that the wolf cannot break into and where they are safe. Emma grinned at me and then, very sweetly, patted my cheek. I took her loving gesture as a sign of her encouragement and patience with me.
Supporting Emma’s typing is not easy. It is actually much harder than I imagined it would be. I am pretty sure Emma spoke the last four words of that sentence because she was not able to trust that I was able to support her well enough to type that. I think she sensed my hesitation. I had no idea what she was trying to type and because I am not well trained and am very new to this, my support varies and is not consistent yet. I am hoping I will learn and be able to give her the support she needs to flourish and eventually type independently. What is fascinating about FC (facilitated communication, more on that ‘here‘ and ‘here‘) is that had I asked this same question of Emma and expected a verbal response, I do not believe she would have given me this answer. If she had, I would have been absolutely blown away. These are not the types of things we have been able to “talk” about. Typing is giving her the tool she needs to be able to express herself in a way that has not been possible to date.
As an aside, two years ago we hired a woman who developed a literacy program for Autistic children. While I have some serious misgivings about certain aspects of her program, the literacy piece is extremely well mapped out and it was what finally gave Emma the tools and practice she needed to learn to form the letters of the alphabet and began to read, write and type. Now two years later as a result, Emma is reading and writing at a second grade level, though it is probably much higher. Emma was not taught through phonetics, in fact we never even taught her the names of the letters in the alphabet. For two years Joe and I worked with Emma every day on her literacy program. For more about that program you can read ‘here‘ and ‘here‘ or put the word “literacy” into the search box and everything I’ve written on the topic will come up (just be aware my ideas and views have changed pretty dramatically since many of these posts were written.)
I mention all of this, because I want people to understand that Emma did not sit down one day and begin typing in full sentences. She did not suddenly pick up an encyclopedia and begin quoting from it. I know there are those who have. I wanted to pursue supported typing with Emma after going to the Autcom Conference this past October and meeting Pascal. He was kind enough to speak with me about Emma and gave me some advice. I didn’t know if she would be a good candidate for FC. After all she has some language and typed independently with her two index fingers. But I want her able to converse on a more sophisticated level. It seemed to me, FC might be the method by which she would be able to do that.
I am always in awe of Emma’s patience with this world, with all of us, with me. Her inner strength and resilience are incredible. She has been ignored, doubted, talked down to, spoken of while she stood right there listening as though she were deaf, she has been misunderstood and treated as though she were incapable of understanding. Were I treated this way I would be in a state of near constant rage, alternating with debilitating depression. If any one of us were treated the way so many view and treat Autistic (whether non-speaking, marginally speaking or fully speaking) people, most of us would want to retreat from this world and lose all faith in people, even people we love.
I do not know how or where Emma gets the strength to greet each day with such cheer or how it is that she is so good-natured, kind and loving after all she has been through in her short life. But she has and is. I began this blog thinking it would be a document of Emma’s progress. But in fact, this blog is a document of my progression. I look back on entries made just a year ago and see how completely my ideas about Autism and my daughter have changed. So much of what I thought and believed I no longer agree with or feel. I have resisted the urge to delete all those past posts, because as horrified as I am by so many of them, I also know they are what I believed at the time. My own journey is a reminder that we neuro-typical (not otherwise specified) adults can and do change, sometimes it just takes some of us a bit longer.
Me, Pascal, Richard and Em during our first “training” session
“Nearly every moment of my existence Has been filled with the necessity of caring for this body This emotional body, so distraught This mental body, so busy This physical body, so out of balance Always
I am not selfish
I am exhausted”
When I first read this I had to close my eyes and sit very still. And as I sat, I remembered something my father said to me so many years ago when he was in a wheel chair. He told me constant pain was exhausting. I was surprised by this. I had never before considered what it must be like to be in constant pain.
None of us are getting out of here alive and while we live our lives there’s going to be pain, but some people have to endure terrible suffering. Too awful for most of us to fully understand or even know. All of us know someone who has dealt with inordinate pain and yet somehow managed to find a way to transcend it, or used it to create something magnificent. Those people are guides. I hear their stories and am in awe of their ability to cope with physical and mental abuse often at the hands of those they should have been able to trust, the very people who should have been there to comfort them, to care for them , but instead turned on them. Yet despite those wounds they are trying to transcend it, they have the desire to rise above it, not give into it. There is tremendous power in that. We humans have an astonishing ability to not only endure, but create astonishing beauty.
Thank you Paula for sending me your beautiful words.
I’m one of those people who, when told to do something that doesn’t make sense or that I can’t figure out the reasoning behind the request, questions it. I don’t mean I think about it, while silently complying. I mean I question the thinking out loud as in, “Why are we taking 8th Avenue, when we could take 10th?” or “Why are they asking for the last four digits of my social security number when I just gave them my passport number and anyway it’s a domestic flight?” or “Why take the ice out first when we could just put everything on top and then scoop ice around it?” or any number of other questions that so easily slide from my brain to my mouth before I can stop myself.
I can’t help myself from asking, “Why?” By the way, I am also married to someone who does the EXACT same thing. Some people would call this controlling or being defiant, but I see it as a need to understand the reasoning. Sometimes when someone explains to me their reasoning, I get it, it makes sense and we can carry on, even if I don’t agree with it. But many times the person explains their reasoning, it still makes no sense and that’s when things get problematic. It is at this point I have a couple of choices, I can comply, do something that makes no sense to me, which is physically painful, it literally hurts to do whatever it is or I can refuse to do it while explaining why I cannot or I can ask for further clarification. I tend toward the last two options. I’m all about clarity. I’m really not trying to cause problems or be difficult, I really am interested in understanding another point of view.
There are other questions I have that have nothing to do with any requests being made of me, but the answers affect me or someone I love. Which brings me to a question that’s been very much on my mind recently. It’s a question that has nagged me since I read Lydia Brown’s piece – Protesting Autism Speaks on her blog Autistic Hoya – why don’t people who say they care about Autism want to hear from Autistic people directly? I’m actually being very serious with this question. I want to understand the thinking behind this. Because, you see, when I finally found Autistic people who were writing blogs, I felt like I’d hit the jack pot. When I read Julia Bascom’s blog Just Stimming it was like a beautiful universe unfolded before my eyes. When E. of The Third Glance reached out to me that first time I read her comment and literally wept with gratitude. I think I read her comment a dozen times. When I met Ibby of Tiny Grace Notes at the Disability Conference in New York City, she may as well have been the President of the United States, I was so thrilled. When she flapped because she was excited to meet me, I felt so completely flattered, it was all I could do not to jump up and down with unadulterated excitement. I felt profound relief because:
1) they are Autistic adults and until I found them, I personally knew none
2) they were describing their thought processes, their experiences, their lives and it gave me insight into how my daughter may be processing the world too
3) they introduced me to concepts I’d never considered, such as: Presuming competence and not speaking about my daughter as though she couldn’t understand, including my daughter in decisions that affect her and not speaking for her.
4) The whole idea of being talked about as inferior, as a deficit, as a tragedy and how that directly affected their self-esteem. This last seems so obvious in retrospect, but it was something I hadn’t considered.
5) Having relied on other parents and so-called “autism professionals” up until my daughter was 10 years old, I was incredibly grateful to meet Autistic adults who were able to explain the experience of being autistic first hand. Their experience has helped me help my daughter more than anything else I’ve read or been told.
6) Many of the autistic adults I now know aren’t that much older than my daughter and I found it comforting to know there is a whole community that she may one day choose to join.
I do not read or speak with my Autistic friends and assume they are speaking for Emma. I don’t assume Emma will grow up to be just like Julia or E. or Ibby or Chou Chou or Paula or Amy. Each of these women has helped me help Emma far more than any “autism professional” has. The Autistic men and women I know give me hope. Hope, not just for Emma, but for ALL our children. Hope for our world and our future. I feel grateful to them. I’m profoundly grateful that they’re blogging, speaking out, protesting, reaching out and asking to be heard. Maybe one day my daughter will be among them. I would hate to think that Emma, having worked so hard to communicate, in whatever way that may be when she’s an adult, having worked up the courage to ask a complete stranger, “Want to hear from me? Want to hear what I have to say?” would be answered with silence or an abrupt “No.” I cannot imagine how painful that must be. I cannot imagine what that does to one’s sense of self to be met with such outright hostility. And I don’t understand why.
I am seeing that my experience is not the experience of others. I do understand that, but why? Why don’t people see those who are Autistic and can communicate, whether by typing or speaking , as a good thing, as a hopeful thing? Why is it that some parents don’t want to hear from Autistics who can communicate? What am I missing here? Really, I want to understand this. Help me understand.
How could you NOT want to hear what she has to say?
When you were first born I had an idea about you, it was an idea I have come back to, all these years later, it was an idea that was more right than wrong. You were very much your own person right from that first moment you drew breath. I remember marveling at your strength and independence. I knew almost nothing about autism. I hadn’t taken the idea of independence and remolded it as “autism” yet, only to rework that idea back to its original concept later. I saw you and appreciated you for who I saw you to be. Defiant, independent, strong, determined and silly. Even as a baby you loved to laugh and appreciated silliness in all its various forms. You loved playing peek-a-boo and being thrown in the air. Those first eighteen months, before I knew words like “vestibular”, “proprioceptive”, “stimming”, “perseverative”, “echolalia” and all the other words that threatened to push you from center stage, making you less you and more an example of a diagnosis weighted with other’s learned opinions, I was in awe of you.
Words have power, but words can confuse, they blinded me for many years, I became caught up in what they meant or what others thought they meant and as a result was less able to appreciate you. I used to wield those words as though they were weapons banishing what was, into something else, something undefinable, something “other”, something I wanted to find a way to control or remove.
As a baby before I knew those other words, you were in a state of either bliss or agitation. I use to watch you with wonder and admiration. You were distressed by the lights and the air seemed to hurt you, as though it scraped against your skin. You liked being swaddled tightly in one of the soft baby blankets I had bought for your arrival. You slept almost constantly those first two weeks. Then your deep slumber was interrupted by internal discomforts I could not guess or see. You greeted these intrusions with indignation, howls of distress and I felt a helplessness I had not known could exist. A helplessness borne from not knowing; watching, but not able to intervene, hearing, but unable to understand. I tried to comfort you, but my understanding of what comfort meant was not the same as yours and so your teaching began. You have been so very patient with me, dearest one. You have never given up on me.
You have painstakingly tried to communicate in a language that does not come naturally to you. You have met me more than half way. You have tried over and over to help me understand and you’ve never stopped. It has taken me a long time to learn some very basic things about you, things you’ve been telling me ever since you were born, but that I couldn’t understand. Things I still forget, but I’m getting better at listening to you and understanding that words are not the only way a human being communicates. I am getting better at hearing you. I have learned to listen to your behavior as though it were a conversation, because it is how you reach out, it is the way you connect. I am learning to lean into you, to not try to do a word-for-word interpretation of your verbal utterances, but to try to feel the meaning of what you are doing or saying.
You are Autistic. Do not let other’s interpretation of that word define you, rather help others understand that you define it. Make your mark in this world by continuing to believe in yourself. Continue to stand up for yourself. Advocate. Let your voice be heard. “Actions speak louder than words,” people say, but they don’t seem to apply that to you and others who cannot and do not rely solely on language. Those people need to be taught, because actions DO speak louder than words if we can learn to listen to them.
You, my beautiful daughter, are kind and good and honest and talented and funny and caring and sensitive and yes, Autistic. Be proud of your neurology, but do not allow others to limit you because of it. Do not allow someone’s idea of what that means to encroach on who you are or how you perceive yourself. You are Autistic and you are my daughter. It could be argued that both come with a great deal of baggage, but both also come with many wonders and advantages. Concentrate on the positives, lean into them, and make your way. Reach out to me, grab my hand, together we are stronger than we are alone.
My friend Steve Summers wrote this a few days ago. I asked Steve if I could repost his words here and he gave me his permission.
“Today I feel tired. —
Tired of being rejected. Tired of being ignored. Tired of being excluded. Tired of being treated like an outcast. Tired of being treated like a misfit. Tired of feeling like others look down on me for being different. Tired of being expected to try and act ‘normal’ to have a ‘normal’ life. — I am not ‘normal.’ I am Autistic. Tired of people who think that just trying harder will make Autistic people ‘more normal.’ — Would you tell a blind person to try harder to see? Would you tell a paraplegic to try harder to walk? Would you tell a colorblind person to try harder to see the colors that they can’t see? Tired of people who don’t understand Autism and who don’t make any effort to learn about Autism so that they can cure their own ignorance. Tired of people who refuse to accept Autistic people just as they are. Tired of people who presume incompetence. Tired of neuro-bigotry. Tired of the silence of others. Silence is *not* support. Want to help us? — Listen to Autistic people. Make an effort to learn about Autism. Educate yourself about what we go through each and every day. Learn about how negative attitudes make us feel. Practice Autism Acceptance. Accept that we are different, not less. Accept that we are different, but *not* defective. Don’t try to make us into a poor copy of your idea of ‘normal.’ Accept that we are okay to be ourselves — just as we are. Accept that we are humans with feelings just like everyone else. Accept that Autistic rights are human rights. Presume our competence. Don’t avoid us, include us. Most of us have social anxiety. Please be kind and reassuring to us. Please reach out to us. We won’t often make the first move after suffering from a lifetime of rejection, exclusion, and being bullied. Please practice inclusion. I am Autistic and I want to be valued and accepted for simply being me. ~ Steve Summers”
Steve is my friend. I am so glad I know him. I value our friendship. I enjoy our conversations.
Yesterday I wrote about acceptance, specifically acceptance of one’s Autistic child by a parent. Parents who do not accept their “child’s autism” often feel criticized and bristle at the perceived implication that they do not “love” their child, “correctly”, “in the right way” or “enough”. I know how completely uninterested I was in the idea of acceptance when I was engaged in an all out battle with Emma’s autism, intent on extricating her from its gnarled grasp. (This last sentence was very much in keeping with how I thought of autism at the time.) What I didn’t consider, what I didn’t know to consider, was Steve and every single person who is autistic who feels the way Steve does.
My inability to accept my daughter’s autism impacts her. Just as I cannot extricate the Autistic parts of her, I cannot pluck out the “autism” from how she sees herself. My non-acceptance, as well intended, as well-meaning as it was, was still felt by her as a criticism of her. But I didn’t know that at the time.
I think we, human beings, forget how pervasive and destructive our ideas about others are. If we are in the majority, our influence, the reach of our opinions are even more destructive. We say, oh but I love her, I just hate the way she walks, talks, the sound of her voice, the color of her skin, eyes, hair. I love her, but I hate the way her mind works, how long it takes her to get dressed, the way she eats… No really, I DO love her. And we do. We feel tremendous love. I loved my daughter all those years I was fighting her autism. I did. I absolutely did. I fought her autism BECAUSE I loved her so much. But then I met people like Steve and Julia and E. and Kassiane and Bridget and Savannah and Laura N. and Sam and Amy and Gareeth and I read what it was like to be brought up by parents who didn’t accept their “autism” and how it felt. And I began to understand. I was able to hear what they were saying and I began to see the connection.
Thank you Steve for allowing me to print your words here. Thank you for writing this. Thank you for helping me parent my daughter differently, so that in ten, fifteen, twenty years from now maybe, just maybe, she will not feel quite so tired.
This is the typed “conversation” I had with Emma last night inspired by the wonderful comments left here yesterday. This was done with very little talking. Emma’s replies are in italics.
“Hi Emma. I know one of your favorite songs is “Beat it”. What other songs do you like?
Emma likes Fireworks. Emma likes to go swimming.
Hey! Did you go swimming today?
Yes, it cold go swimming.
Emma, was the water cold or was the air outside cold or both?
Both cold outside.
It is cold outside now because it is fall. I like the fall when the air gets colder. Do you like the fall too?
Yes, I do like the fall too.
What do you want to do this weekend?
I want to have a weekend with Jackie at the Vanderbilt wiyemseeay. And go swimming.”
This was HUGE for Emma and me. Rereading it now I’m kicking myself that I didn’t ask better questions and follow her lead more instead of directing the conversation. For example I wish I’d spent more time talking to her about swimming instead of going off about the seasons, which were of little if any interest to her. I could have asked her a great many questions about the pool and swimming and the water temperature, but didn’t. I was so surprised when she wrote, “Yes, it cold go swimming.” I literally laughed out loud when she wrote that, because this is just huge for her to introduce a new thought, to volunteer new information when typing together. Excitement doesn’t really sum up what I felt. I was ecstatic!
Emma kept trying to read my typed words out loud, but I reminded her to read silently. I made a huge number of mistakes while having this conversation with her. I corrected her spelling a couple of times, and wished I hadn’t. I never know whether it’s best to let her spell things and go over the spelling later, separately or whether its better to correct it right away or better to leave it alone. I wanted her to feel encouraged, supported and cheered on, not criticized. So that’s something I am still questioning. I also get so excited when she says anything off the grid, I get overwhelmed and can’t think what to say other than – “OMG you just introduced a new topic and I’m so excited!!” Maybe I can learn to relax a little and go with it a bit more. I am also aware that my excitement is an example of my NOT assuming competence or rather it is me feeling euphoric that Em shows her vast intelligence in a way that my NT brain can grasp. I really want to learn how to move away from that limited thinking on my part.
When Emma was diagnosed with autism I remember that first day when all the therapists came to our home to work with her. I’d done my homework, read all the materials the agency provided me with and then some. Yet, I remember how everything was “dumbed down”. Things that I knew she knew were treated as though she didn’t know them. Really simple things were suddenly a huge deal if she indicated she knew them. I remember vividly my confusion. I began to doubt everything I thought I knew or assumed about Emma. I completely capitulated to some set idea about my daughter given by a group of people who had never met her but made assumptions based on a single word – Autistic.
I’m old enough and have enough humility to admit I don’t know what I’m doing a great deal of the time. This is not a popular statement in our culture of bullshit reigning supreme, even if it’s all a lie, even if it means people who know almost nothing about a given topic, but who claim “expertise” are suddenly seen as having something sensible to say. The art of bullshit has become a well honed skill by about the age of ten these days. It’s amazing how quickly children learn to adopt it. Add a little chutzpah and you’ve got a kid who will go far in this world of ours without being particularly knowledgable in anything.
However, the art of bullshit requires a couple of things – a massive dose of ego and an ability to lie. My daughter Emma has neither of these. Still, I am feeling confident she will do well in this crazy world of ours.
A year ago, I would have gone to a parent/teacher conference and not thought twice about my daughter being in the same room while we spoke about her. Six months ago, I knew enough to know that she understood what was being said even if she didn’t indicate that she did and would move to another room or arrange for child care during a conference so she would not be present.
This morning I received a passionate comment from someone who was responding to another comment about parent/teacher conferences. You can see the whole comment by going to yesterday’s post, but she ended with this:
“These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfills some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.
PLEASE, if you truly want to help Autistic people, stand up for our right to be part of the conversation about our own lives from a VERY young age. Advocating FOR us is GREAT, but ONLY if the purpose of that is to support us in our SELF-advocacy… and to put pressure on professionals to accept OUR voices and OUR choices as the determining forces in OUR lives.”
My initial reaction was a defensive one. My first thought was – but children are never present at parent/teacher conferences. And then I realized that isn’t true. My son Nic is asked to attend our parent/teacher conferences and has been required to attend them since he entered middle school (the fifth grade, the age Emma is now). My second thought was, but what if one of her teachers or an aide said something awful about Emma in front of her, what if they spoke of her in language that would be hurtful? I can’t control how others speak. But then I realized that were this to happen in my son’s presence I would not hesitate in saying something in front of him to that person. I would correct them and tell them why it was unacceptable and he would hear this and understand that this person was wrong in speaking this way about him. Then I thought, but wait, we might need to discuss topics that might make her sad, things about self-injurious behaviors or how she ran out into the hallway and it wouldn’t be appropriate for her to hear these kinds of conversations, but again I thought of my son and realized how we would include him in the conversation. As I went through the various reasons why I couldn’t do what the commenter suggested, I saw quickly just how insidious the ingrained prejudices regarding autism are. I saw how I still have so much more to learn. And so I continue to and I tweak my thinking and my behavior and then someone else tells me something and I have to think about their words and then I have to tweak my behavior some more.
Directly after reading this thought-provoking comment (I am so grateful to the writer for having sent it) I received an email from someone I care deeply about. I do not have explicit permission to write about the specifics so I will not, but it was about where these kinds of ingrained beliefs can lead. It was about abuse. It was a story I am becoming more and more familiar with. It was about someone I know. It was about a defenseless, nonverbal child. It was about more than one event. It was about many, many abuses occurring over and over by many, many different people. My horror is never lessened no matter how many times I hear of this. In fact my horror increases. What I used to believe, what I used to console myself with, that these were unusual, isolated instances of horrible people behaving in heinous way, is not something I can cling to any more. These stories are everywhere and I am hearing them all the time now. I cannot console myself that they are unusual. I can no longer wrap myself in a cocoon of optimistic assurances that this hasn’t happened and will never happen to my daughter, because even if we are lucky enough that they do not happen to our specific child, they are occurring constantly to other people’s children. How is that any better? How is that any different?
The abuse of people who are considered “less than” and “incompetent”. The physical, sexual and emotional abuse that Autistic people and children are having to endure at the hands of people ALL THE TIME that they come into contact with, at school, their care givers, the people they are suppose to be able to trust, their relatives, neighbors, the list goes on and on. This is going on around us and to those we love and care about. This is about people who are hurting, not just our children, but people all over the world who are deemed “less than”. This is so much bigger than “our children”.
Please read, “like”, share and tweet my latest interview with 13-year-old Henry, published yesterday on Huffington Post. For all you tweeters, I am trying to get Henry on Katie Couric’s show. If you’ll click on the link above to read the interview, tweet the piece out and be sure to include @KatieCouric in your tweet. This is what I’ve tweeted – “@KatieCouric Henry’s fight for inclusion @arianezurcher http://t.co/vhSs85v2 Katie – Henry’s story would be terrific for your show!” If enough people tweet her, she may just take notice. Let’s stand with Henry!
Yesterday’s topic brought forth a wonderful discussion regarding “The Diet” whether it is a gluten-free/casein-free diet or a variation of it. I realized in reading the comments that my post may have sounded critical of the diet and even critical of those who have tried it with positive results. This was not my intention and so I want to be clear about that. I have a lot of feelings about having put Emma through so much trauma as a result of putting her on the (in our case failed) diet. The first time we tried it, when she was still just two years old, did not seem to have the same negative impact that it did just a year ago when I took all her favorite foods away and implemented an even more restrictive diet under the guidance of a well-regarded naturopath. This is something Emma still talks about, something she is still hyper-worried I might suddenly do again. I should have placed more emphasis on this. So to all who have experienced the joy of finding something that helped you or your child, I apologize. I did not in any way mean to illegitimize what you’ve found to be so very helpful or to suggest the diet is quackery.
What is clear from reading all the links people thoughtfully provided and the many personal stories, a GFCF diet and its various variations, has and does help many children and adults, regardless of their neurology. An important point, made several times in the terrific comments, was that because of the hyper-sensitivities experienced by so many Autistic people, what might be experienced as a mild intestinal discomfort in a non-Autistic person could be felt intensely and painfully by someone with a different neurology. Hence a food “intolerance” not even an allergy could cause great distress.
In the post I hypothetically asked, were I able to do it all over again would I have put Emma on the diet? I wrote, “…I would have sought out a reputable pediatric neurologist who could have given Emma the blood work necessary to tell us whether the diet was something she would benefit from. I would have looked for scientific evidence giving me reason to put her on such a diet and without that evidence I would not have put her through it.” Except, I realized last night as I thought more about this, we DID do these things. We didn’t have a pediatric neurologist, but we did take her to a highly regarded pediatric allergist, did blood work and it showed she was not allergic to anything, but he suggested she may have food intolerances that might be contributing to her constipation issues. It was this doctor who suggested we try the GFCF diet to see if it might help.
But as one commenter pointed out, in her country there isn’t anyone who will perform such tests. She wrote, “If I had to do it all over again? I would have done it sooner to alleviate my daughter’s suffering. For the first few years it was just dairy I removed from the diet. I thought it too hard to cook gluten-free as well. When I finally adjusted the diet to gluten and dairy free at the age of 4 my daughter ‘s chronic painful distressing diarrhea ceased..” In fact both her children have responded well to having their diet modified. Hers is but one example of many who have benefited from implementing such a diet.
To another commenters point, even if they had been able to find such a doctor, their insurance would not cover such tests and they wouldn’t have been able to afford them. For people like these, who either cannot afford to have such tests run or who cannot find a doctor to even perform these tests, what is the alternative? What can those people do, other than read and learn all they can while hoping their decision helps themselves or their child. As any of you know who read the various links to the many articles I posted yesterday on the diet, those articles are NOT all in agreement. Some state that the diet has shown no positive change, while others suggest that in some cases the diet has helped. So what is a person to do?
Which brings me to another terrific comment, in which she asked, “…maybe we should really think, do we have proper medical care? Do we have good doctors? Are we listening to them? Are we skipping the doc and practicing our own medicine? Why are we not trusting our doctors?” By the way this same commenter left another longer and hilarious comment on yesterday’s post that is too long to reprint here, but is really relevant to not just this topic, but ALL topics related to parenting, who do we go to for advise, where do we get our information and why do so many of us no longer trust the medical professionals advising us and instead listen to other parents who are often not doctors or even have any medical training, but have found something that helps or doesn’t help them or their child?
I know it isn’t just me who has come to doubt almost everything I read about Autism. I know a great many people who feel as I do – we are almost constantly skeptical. And while some skepticism is a good thing, I don’t know that my past radical approach has proven to be so beneficial in the long run. These days when I have questions regarding Autism, but particularly related to my daughter, there are a couple of things I do.
1) I seek advice from a number of Autistics I know, am friends with and trust. I ask them for both their personal experience and for any research they know of that might help me.
2) If it’s a medical issue related to autism and Emma I run it by my brother who is a bio-chemist and spent years working for a pharmaceutical company developing drug treatments and whose wife, also a bio-chemist who now runs a non-profit trying to make vaccines available to children in third world countries.
3) I get a second opinion either by getting referrals to researchers or people (preferably Autistic) in the field or I reach out to various neurologists I’ve met to get their views.
4) I read whatever I can find, sometimes sending particularly dense articles to my brother and/or my Autistic friends who are involved in whatever field of study it is.
5) Discuss with my husband, foisting said articles on him and try to hash out what we think and what we should do. If we cannot agree, revisit steps 1, 2, 3 & 4.
You’ve described yourself as a “nonspeaking (at times) Autistic.
“Yes, I think the phrase “nonspeaking at times” captures my experience, and also that of others who do have speech capabilities but can’t always access them. Because one can speak at times does not mean that speech is a reliable form of communication for that person. Also, when someone can speak some of the time, others may not notice that they are having trouble speaking. I have sometimes not been able to speak and other people just thought I was “being quiet” or did not have anything to say; that dates back to childhood.”
Why did you make a video of you not speaking?
“I made the video because we need to change some of the ideas about “high functioning” and “low functioning” Autistics. Not being able to speak is equated with “low functioning”. A constellation of characteristics are said to be true of only “LF” people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while “HF” people are said to have another set of characteristics, also fairly stereotypical, such as being “geniuses” who are good at computer programming and lack empathy. These binary divisions don’t address the wide variety and range of characteristics of Autistic people, and paint a limited picture of individual Autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their “end” of the autism spectrum. I have always known I can’t speak on a regular basis, but the conversations about “nonverbal” people assume that I have a different experience when in fact it’s not so different at all.”
Can you talk about how and why you sometimes are unable to speak?
“I can’t say I speak “most of the time,” since most of my waking hours are not spent talking. I showed on my video, even when I am alone, I frequently can’t talk. I don’t need to talk at those times, but I am very aware that if I were suddenly presented with a situation in which I needed to talk, I would not be able to. I am, however, usually able to make what some Autistics have called “speech sounds,” which means that I can say something, even if it is not exactly what wanted to say. I have a number of reasons for not being able to speak at any given time. I distinguish between not being able to talk at all and having trouble with word finding, which does not make me lose speech, but can have some interesting results when I find a word that is not the right one! I can go “in and out of speech” several times during the course of a day.
The following list has some of my reasons for not being able to talk. These are not in any particular order: Sensory overload, being tired, reading or seeing something disturbing, thinking more in visual images than in words, trying to talk when other people are talking too fast and not taking turns‒which is not limited to the autism spectrum, although a lot of literature exists about teaching us to take turns. Some of that teaching is necessary, but I think it should be introduced to non-autistics as well!”
Are there other things that stop you from being able to talk?
Another thing that will stop me from being able to talk is to have big chunks of time where I am not talking because I am mostly alone, like when my son spends the weekend with his dad. After a weekend spent primarily not talking, I am not used to it and have trouble getting started again. It does not take more than half a day of not talking before I need to urge myself to take it up again. It’s the inertia of not doing it, plus I have to remind myself, consciously, of how to move my muscles (mouth, lips, larynx) and intentionally will myself to speak, which does not always work. Sometimes my son will ask me “Mommy, are you having a hard time talking?” and if I manage to say “Yes,” I am able to start talking again, although I can have a hard time formulating sentences and finding words for a bit.”
Of all the items on the list, which ones affect you the most?
“The thing that will stop me cold, suddenly switching from being able to speak to not being able to utter a word is seeing, reading, or hearing something that is disturbing. I write indexes for nonfiction books. Some of them have very graphic descriptions of things like genocide or war. I did my “make myself talk experiment” on a day when I was using voice recognition software to do data entry for a book that had ten chapters of very disturbing material. I used VRS a lot at that time to save my wrists and fingers for playing the organ. Since I am a visual thinker, not only was I reading it, but also seeing it in my mind, like an awful movie that I did not want to watch,. I found myself typing instead of dictating, and realized I had been doing so for maybe half an hour. I said to myself, “Why did I switch to typing?! I don’t want to be typing!” and my experiment was underway. I spent the next two hours trying to make myself talk, with no success. I was online at the time, so was typing to people telling them about the experiment. Some of them were a bit concerned that I was trying to force myself to talk when I couldn’t, but I needed to find out if I would be able to talk if I tried really hard. My answer was provided after two hours, in the form of a small squeak. That’s the only sound I could make after all that trying. I had two realizations as I finally ended my experiment, still not able to talk except for that squeak. The first was that it reminded me of when I had an epidural for a procedure and tried (yet another!) experiment to see if I could wiggle my toe. The doctor got “mad” at me and told me I was actually wasting physical energy I would need to recover from the procedure. I had the same feeling of exhaustion from trying to make myself speak. The other thing I realized is that maybe I should be carrying an autism card with me in case I was at the scene of something upsetting, like an accident or crime, and could not talk to first responders. Some things that I find disturbing and thus making me not able to talk are not that dramatic. It can be someone saying something that I did not expect them to say (not limited to “bad” things) or anything unexpected or surprising.”
What are your earliest experiences of not being able to speak?
“When I was a child, there were many times when I could not speak. I think very early on, I was not very aware that I could not talk at times; I simply did not talk when I couldn’t. I definitely spent a lot of time looking at things like dust motes in the air and the thread on my blanket and other tiny little interesting things; I have no idea if anyone tried to talk to me and got a response, how fast a response they got, and whether or not I was conscious that I wanted to say something but couldn’t. In later childhood I was more aware that I was both not speaking and wishing I was. I attributed loss of speech to being “shy,” and was angry at myself for being that way. I spent quite a few decades having times of not being able to speak, including the entire day once, and being angry at myself for not being more “brave.” Reasons include some social ones, such as being afraid of another person for whatever reason, feeling “on the spot,” having a particularly anxious day, people interrupting me. I think people were not aware they were interrupting me, as my speech was so tentative. Other reasons include being tired, having more visual thinking and not the accompanying language-based thinking, since my thinking is visual with an audio soundtrack and the soundtrack sometimes drops out for whatever reason. Sometimes the lighting or the color green will render me speechless. I love green! It is very mesmerizing! It often makes me unable or disinterested in speaking, especially the green of a large field of grass. Eeeeeeee!!!!!”
When did your views regarding your inability to speak at times change?
“After I learned about autism, I started thinking more about the reasons I lost speech. I met people who either could not talk at all, could not always reliably access speech (like me!), stuttered (like me, again), had trouble finding words, or had to say other words, circling around until the right one was selected, such as one of the “big words” I used to get teased about in school.
One of my ongoing word-choice problems is “French toast.” Early in the morning, I can’t think of “French toast,” for some reason. I ask my son if he wants “Um, um, um, um, …. uh… (then I draw a square shape in the air, since I can see the French toast clearly in my mind) … um, square things!…. French toast!” Since my son now knows that “square things” means French toast, sometimes we just stop at “square things” and he says yes or he will say, “Mommy, I want square things!” and we laugh and I make the French toast.”
Does it trouble your son that you can’t talk at times, or have trouble saying what you mean?
“My son is very good at talking about things he doesn’t like, but I don’t assume that he would feel entirely comfortable directly telling me things he doesn’t like about me. The things he does say indicate support rather than discomfort. A few times I have been annoyed at myself for stuttering and he says “Mommy! Don’t ever be mad at yourself for stuttering!” or, a few times, “Mommy. Stuttering. It’s a way of life.” I don’t not-communicate with him, so he does not feel ignored. I use alternative ways of communicating with him, just not talking. I write, point, use some of my extremely limited repertoire of ASL signs. I once was writing to him about what to wear to church and he wrote back “Yes, mother dearest!” He (as is true of most people I write to) matches my communication mode and writes back. I have written to him (and to others) “You don’t have to write to me; I can hear you!” He has noticed, and told me, that when he comes back from visiting his dad I “seem different.” We have talked about his coming back as a transition point- the house is suddenly noisier, and definitely “talkier.” I have often said that my child talks to think, so we are quite different in that way. I am working on what would make the transition from “kid gone” to “kid in the house” an easier one for both of us.”
For people who do not have difficulty speaking, they may have trouble understanding how someone might be able to speak in one situation and then not able to in another. Can you talk more about this?
“Some abilities are not there every single time a person wants to access them. This is true for all people, but for an Autistic person, these fluctuations in abilities and access to abilities might be more pronounced. If I don’t play the organ almost every day, it’s almost like I forget how to play it. That’s why I always practice on Saturday night and Sunday morning before church. There is no way I can go in there cold and play like I want to. Think of something like delivering a presentation. For most typical people, there will be good days and bad days, presentations you wish you could do over, and days when you were really “on your game.” Or, think of your favorite sports team and player. Some games are not so good; other games the team really does well. But playing the organ or hitting a home run is not an essential life skill (ballplayers and organists feel free to disagree!). But when it comes to anything considered really basic, like being able to talk, a sense of mystery surrounds the topic, when a person can do it one time and not another. I maintain that it’s not that different anything else, but is more noticeable and pronounced when it’s something that is expected of everyone, and when one can do that “expected thing” most of the time. Maybe for some of us talking is an extreme sport, in the sense of having to really work, practice, try hard, take risks, and think consciously about what we are doing, whereas for some people the ability to talk is very natural and not even a conscious effort.”
Talk about the idea of language and thinking.
“I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with “not being able to think,” “being lost in an unknown world” or anything other than specifically not being able to talk. For some people it could mean a lack of focus on “the present moment” (how many people are fully present in each moment anyway?!) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because someone can’t talk, they can’t think. You wouldn’t look at someone who has a tracheostomy tube and go “Oh wow. That person can’t think!”
What is it like when you’re unable to speak while in public and are expected to?
“It’s a bit nerve-wracking, but only in situations where people do not know me well and are expecting that I can speak like a non-autistic person. I try to anticipate what I will need to be able to communicate at those times but I can’t always build in my own supports. When I am with friends, it’s no big deal if I can’t talk or can’t talk much. In work situations it’s more difficult for me to feel calm about it. Unfortunately this expectation is not limited to people who don’t know much about disabilities, so that I have had to really struggle at autism-related events where there really aren’t accommodations for Autistic ways of communicating. It’s an ongoing process for nondisabled people to learn about communication differences and to anticipate them so that Autistics and other people with communication disabilities aren’t doing most or all of the work to create our own accommodations.”
How do people react to you?
Really, I mostly don’t get reactions, because often the times that I can’t speak coincide with the other person continuing to talk, maybe because they think I don’t have anything to say, or that they are like “Well, if she’s not going to talk, I will!” I do get all kinds of reactions, from total acceptance to “you could if you wanted to- try harder” kind of thing that made me feel sad when I was making the video. Sometimes people don’t believe me when I say (in speech or writing!) that I have trouble talking. I have to be very clear that I mean not being able to talk at all. I have learned that “trouble talking” might mean not saying the right thing, or stage fright, and “I can’t talk right now” can mean “I am too busy to deal with you” rather than that I literally an unable to speak with words coming out of my mouth! I have had a few mixups when people did not know I meant “I can’t talk right now” very literally. Sometimes people just don’t quite believe me and think I am making it up. I am not sure why they would think I would go to that much trouble! There are also people who have never heard me stutter, who think that I don’t, even though I tell them I do. They are going to get treated to another video in a few weeks! I was finally able to capture myself stuttering at a time when I also had the webcam with me.”
Are there things that help you speak after a period of not speaking?
“I mostly just have to wait. I don’t particularly want to talk a lot, but I need to. It’s just one of those things that is expected, and it is expected that if I can do it some of the time, I can do it all of the time. It might seem that someone who can speak but loses speech at times would want to find ways to prevent speech loss, but I often welcome not being able to talk. It gives me a break from the exhausting task of speech production. My idea of the perfect conversation and this is ideal for a number of my Autistic friends, too, is two laptops or mobile devices or text-based equipment, but we can be in the same room together writing to one another. I don’t get a lot of this because I live in a rural area and most of the people I write to are long-distance. Some friends locally are very accepting but we don’t have any alternative setup other than me scribbling on paper. I also get way overloaded by hearing other people talk, as it challenges my auditory processing abilities and I can only take so much talking. If other people, whether or not they can speak, would type to me, I think I could get a lot more accomplished with the interaction with that person. Or, at least I think I could. If writing is not that person’s strongest form of communication, it will be a limit for that person. We should not be expected to always accommodate “talkers” and not the other way around. But it does take extra effort on my part because people can’t tell just from looking at me that I am a person who sometimes can’t access speech.
Ideally, we could take turns using each person’s communication strengths and weaknesses, assuming we are able to do that much. Of course, sometimes it just won’t work.”
This is the email I received this morning. It’s from Autism Speaks. Please read and let’s discuss…
“CONTACT THE CAMPAIGNS TO LET THEM KNOW WE WANT OUR 1 IN 88 IN THE DEBATES!
Dear Ariane ,
We had a significant presence at the first Presidential Debate at Denver University last week. We are going to have an even bigger presence at the next two debates to show the candidates how big the autism community is!
We need your help to make the autism community, and all of our issues, a squeaky wheel in this election season. For the next debate, we don’t want just a mention of autism.
We want the candidates to discuss a plan for leadership on increased funding for dedicated autism research and appropriate health insurance coverage for all Americans with autism.”
In the first statement Autism Speaks writes, “… we want our 1 in 88 in the debates.” When they say “we” am I one of the “we”? “We are going to have an even bigger presence at the next two debates…” We are?
“Our” is a curious word to use when speaking of a group of people, many of whom can speak for themselves and those who cannot “speak” are capable of communicating, through typing or other means of communication, their thoughts and ideas. “Our” is a pronoun implying ownership or at the very least lends a sense of unity and inclusiveness as in “our politicians,” “our neighbors,” “our friends”. What Autism Speaks is really saying is “our Autistics.” I don’t think the people I know, whether Autistic or not, would take kindly to that wording, but “our 1 in 88” somehow gets a pass?
“We want our 1 in 88 in the debates!” Really? Is Autism Speaks suggesting Autistic people should be up on a stage or at a town hall debating the presidential candidates? It’s an interesting and compelling idea and one I whole-heartedly embrace, except I don’t believe this is what they mean. “Behind every person with Autism is an army of support.” I don’t think most of the people I know who are Autistic feel they have an “army of support.” In fact most of the people I know who are Autistic feel they have very little, if any support. But I’d really like those who are Autistic to weigh in here and say for themselves whether they feel they have an “army of support.” Armies are usually employed to fight or fend off an enemy. Who is the enemy and who makes up this army? Am I part of the ‘army’ that is supposedly supporting my daughter? Maybe me and Richard? An army of two? Where is the army of support that’s standing behind each and every “person with autism”?
Autism Speaks is much, much more than an organization attempting to raise awareness or one that insists they speak for Autistic people while doing nothing of the kind. They are running a campaign, not a campaign that raises money to help those with Autism, but a campaign that promotes fear and generates terror. Anyone who has spent any time in the advertising business knows, fear causes people to open their check books faster than any other single emotion. Autism Speaks does a brilliant job using language to convey other, more subtle meanings.
Autism Speaks is interested in having autism addressed by politicians, a worthy and important suggestion that ALL of us can agree on. Except Autism Speaks is NOT a leader in showing the world how to INCLUDE Autistic people in the building and formation of their various programs. Autism Speaks uses the words, “Autism Speaks it’s time to listen.” But who is it they are suggesting we listen to? Not Autistics. They have positioned themselves as an organization which represents Autism. They have self-appointed themselves as the “voice” of autistic people despite the vehement protests by so many who are Autistic.
Can you imagine an organization that suggested they spoke for the American people and yet were made up of people of some other nationality. An organization which only had one or perhaps two Americans on their board, advisory committee or occupying more than one or two seats of the upper echelons of their organization? Imagine for a moment how you would feel if an organization called themselves: “Americans Speak it’s time to listen”, yet those who were talking weren’t American and when you tried to say something you were routinely ignored. Imagine how you would feel if this organization continued to insist they spoke for you and yet when you heard them speak you didn’t recognize yourself or any of those you knew. Just imagine.
To Mitt Romney and Barack Obama: please inform yourselves about autism by listening to those who are AUTISTIC. That’s the discussion I’m interested in listening to, the one that includes autistic people and not those organizations that say they do and yet do not.
Emma's Hope Book 