The following is a trailer for Spectrum: A Documentary about Autism and Sensory Perception. This is the documentary I cannot wait to see when it’s finished! It features Nick Walker, Martial Artist, writer of the single best description I’ve ever read answering the question “What is Autism?” and all around amazing guy and Judy Endow, a terrific writer, speaker, talented painter and sculptor and friend. The third person featured is Tito Mukhopadhyay, eloquent poet, writer and son to the woman I am filled with gratitude for on a daily basis, Soma Mukhopadhyay, who taught me how to communicate with my daughter.
This is the first of two blogs you must know about, if you don’t already. How to Talk to a Woman Whose Child is Dead the most recent post on Unstrange Mind. It is so beautifully written by the multi-talented Sparrow Rose Jones, who also sells her fabulous art work in the form of t-shirts, stickers, hoodies. Click this link Red Bubble to see and purchase Sparrow’s wonderful art work.
And finally I’m going to end by sharing again a video of the presentation Emma and I gave at CoNGO affiliated with the UN a month ago on World Autism Awareness Day, now captioned thanks to the beautiful and talented, Savannah Nicole Logsdon-Breakstone. Thank you again Savannah!
Awhile ago Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”
Yesterday Richard referenced Emma’s “silly things” but without the full quote and I think some may have read his words and thought he was suggesting her spoken words were silly, when he was actually quoting Emma. But the context is everything and when Emma wrote the above, it was about written language versus spoken. I was reminded of my friend, Leah Kelley who has a blog, Thirty Days of Autism. About a year ago, Leah posted a video that I thought so hysterical, I had to share it and have since watched it many times. It’s called Bulbous Bouffant.
I dare anyone to watch this video and not smile. Me? I laughed out loud. Did any of you join in, saying the words out loud? I did. Was this silly of me? YES! I love silly. Silly is way under rated. How much more fun would we all have if we could engage in conversations like this one? Those of you who hate clicking on links, you’re going to have to… go on, just do it. It’s hilarious.
We live in a world where this sort of conversation is not exactly encouraged. In fact, most people, if they encountered such a person while waiting for the bus or subway would probably try to politely extricate themselves from such a conversation. Someone who spoke, as the person in the video does, would be thought odd and would be avoided. He might even frighten people.
A few months ago, Emma wrote, “I am intelligent and cannot speak with the same brilliant words that are in my mind.” And I understood completely what she was saying. We need to show that we are intelligent before we can lapse into the silliness of enjoying the sounds of a word, simply because it’s fun, or admit that a word makes us happy, not because of its meaning, but just because of the way it feels and sounds while saying it. Intelligence first and then silliness can ensue, but if intelligence isn’t proven, then silliness becomes “inappropriate” or “weird” or any number of other words we use when we think someone is not like us and less than.
Yesterday Emma wrote, “I troubled you when I intended to talk and words told different tales than I thought.” I have to say it made me sad to read her words because she’s right, it did trouble me, and had I known how bright she was, I would not have been so troubled. But this is also a problematic statement because it’s focused on perceived intelligence and shows a definite prejudice towards those who are defined as “intelligent” versus those who are not. That actually goes against everything I believe. ALL human beings should be treated equally, with respect, love and kindness, no matter what their perceived intelligence is. And yet, my obvious prejudice is there and so this is something I will look at and be more aware of. Without awareness, I cannot change.
So when Emma then wrote, “I realize any words are valued more than silence” I understood her to mean her “written words” because those are the words we applaud her for, those are the words we quote and talk about, those are the words we say, “Here! Read this!” Partly because they are so insightful and wonderfully wise, but also because they prove, beyond a doubt, how very bright she is. But also there’s a hierarchy in our culture – the more spoken language an Autistic child has, the “higher” functioning they are deemed. Spoken language in our culture is everything.
Except what about all those people who have not found a way to express themselves? What about those who cannot express “profound insights”? Are they less important? Are they somehow less human? Are they not deserving of the same respect and treatment we so easily and readily give to those who speak eloquently and brilliantly?
“I realize any words are valued more than silence.”
I’m honored to be a guest on Human Potential‘s blog talk radio show, The Importance of Allies With Ariane Zurcher, airing tonight at 9pm EDT.
If you have not viewed the two youtube videos of Ari Ne’eman’s speech and Emma’s, where she writes a message to parents about autism, I hope you’ll take the time to do so now. Please feel free to share widely.
As both kids are on spring break this week, I asked them whether they wanted to have a “sibling chat”. Both agreed. What has occurred as a result is nothing short of incredible. Understandings have been forged, exchanges of ideas and beliefs have been made. They have listened to each other, asked questions, shown patience and tremendous compassion for one another and in the end grown closer… Many people take these types of conversations for granted. But we do not.
My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).
As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on. At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic. As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.
Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?” (I know, talk about asking the obvious…)
I am painfully aware that by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media. If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change. So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.
This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made. And what about those who do speak, are their feelings not important? These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear. Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.
“Come Emma, let’s go in the other room.” I suggested. Once outside I asked Emma if she wanted to discuss the video Ari was referring to. Emma wrote, “The video has a mom who is lost and cannot rationalize hope.” Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.” Read that again –
“Autistic people are not viewed as able beings, this view makes us suffer.”
After Ari’s terrific talk, Emma and I were introduced. Watch Emma writing her final sentence regarding autism and acceptance, which says it all…
I often think about that first time I saw someone who was unable to express themselves through spoken language, but who spoke through writing. There is nothing quite like seeing to believe or at least to begin to believe what many of us have been told is impossible. So I’ve compiled a few Youtube videos of different people who communicate the way Emma does. A couple of them show people who have graduated from the laminated letter board and now type independently on a stationary keyboard. This is our goal and what Emma is working toward. For those who may feel someone holding a laminated letter board is cumbersome and suspect, please keep in mind the letter board is a stepping stone, which all hope will eventually lead to full independence.
“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.”
At the end of this terrific post he writes:
“Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.”
Ido wrote a book with the same title as his blog – Ido in Autismland. I cannot recommend this book enough and have written about it before ‘here‘ and ‘here.’ It should be required reading for all parents with an Autistic child as well as anyone who is considering entering or is already in the field of special education and/or autism.
This second Youtube video is of a boy who writes a letter to his church.
Jackie Dorhurst is a speech/language pathologist shown here working with Gavin. Jackie has an organization called RPM+ located in Wisconsin.
This next video is of my friend Sue Finnes’s son Chris. Sue has a wealth of videos that she’s posted on Youtube over the years of Chris working with a number of people whom she’s trained to work with him.
And finally this video is of another independent typer, Mitch Helt who writes a letter to his aide.
This post was inspired by a comment from Ari, who has a wonderful blog, Pixie Perceptions. You are not alone Ari. Doing all I can to make sure others realize this…
Years ago Richard and I went to hear Temple Grandin speak (this was before the documentary about her had been made). She had slides and gave a terrific talk about what it was like growing up as an Autistic child in a not autistic friendly world. After the talk she went into the front entrance of the auditorium where she sat near a table displaying her latest book. I went over to tell her how much I enjoyed reading her two previous books and to ask her if she had any suggestions for me regarding Emma’s inability to stay seated when on an airplane prior to take off and again once we landed. (This was something Em had a terrible time dealing with and would get a look of abject panic, before launching into a high volumed scream that had all the passengers covering their ears. We were pretty desperate to find some way to help her cope.)
Temple said she was pretty sure there were sensory issues at work and gave some suggestions of things we might do to mitigate those. I remember thinking that Temple in no way resembled my daughter and then made the assumption that Temple must have been far more able when she was my daughter’s age than my daughter currently was. Whether this is actually true or not is something I cannot know, but a version of this thought process on my part is one I’ve repeated over the years on more than a few occasions. So desperate to quell my fears and worries I have sought to find my daughter’s adult replica. I have made the mistake of comparing an adult, possibly an adult who is now even in their 30’s, 40’s or even 50’s, and then drawn conclusions about what I imagine they were like when they were my daughter’s age.
Comparing Em to any adult has proven to be unhelpful to me, to my daughter and, I imagine to the person I am comparing her to, if they were aware I was doing it. In addition, comparing a child to an adult is never going to give an accurate view of anything, there are too many variables involved. And this kind of thinking completely ignores the fact that all human beings progress, evolve and change. This is an obvious statement when applied to a non autistic child, but somehow I came to believe that my Autistic child was different. I worried she would not progress. I worried she would not be able to learn. I worried because, in part anyway, we were given information about our Autistic child that has been proven to be not true. We were given information that was in direct contrast to presuming competence. Just as Emma no longer suffers when traveling in an airplane, she also now reads and writes and has, as of three days ago, mastered the complicated skill of a “catch” at her trapeze school.
Excuse me while I jump up and down while wiping away my tears of joy. Emma wasn’t able to do a catch upon her first try or second or even third. Em has been going to trapeze school for more than two years. She also goes to gymnastics once a week where she has been working hard for almost three years strengthening her core muscles. In the last month she is now able to do a cartwheel. Emma began learning to type two and a half years ago. She practices every day. She practices reading too. She practices and works really hard. None of this has come easily or automatically, there is no “magic” involved, unless magic means being given the opportunity to work toward her strengths, to learn and practice and the belief that she can and will succeed. Watch that video again, because all her hard work is paying off. Watch Emma fly!
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…
The New York Times published an OpEd piece yesterday by Bill Lichtenstein about the use of restraints and seclusion rooms for children with special needs in schools. Please read by clicking ‘here‘. Bill Lichtenstein writes, “According to national Department of Education data, most of the nearly 40,000 students who were restrained or isolated in seclusion rooms during the 2009-10 school year had learning, behavioral, physical or developmental needs, even though students with those issues represented just 12 percent of the student population.”
When we speak of a group of people as less than, when we view them through the lens of deficiency, we begin paving the way for the kind of abuse shown in this footage at the Judge Rotenberg Center.
The Judge Rotenberg Center is still operating despite lawsuits, protests and outrage. The Judge Rotenberg Center, the systematic use of restraints and seclusion rooms in our schools as described in the NYTimes OpEd piece are but a few examples of what happens when we allow ourselves to think of people as “low functioning,” “severely Autistic” or any of the other words so readily used when speaking of Autism . Those words make incorrect assumptions about a person’s intellect, capabilities and cognition.
When organizations like Autism Speaks and others like them fan the flames of fear by using words like epidemic, devastating, and use war terminology regarding Autism and Autistic people we are creating a toxic environment for those who are Autistic, an environment our children, who will one day grow up to become adults, will inherit. There is a connection to the current words being used when talking about Autism and the abuse of Autistics.
All of us, each one of us must ask ourselves – if you were unable to speak in a language that those who had power over you understood, if you were spoken of as “broken,” “deficient,” “low functioning” and people treated you as though you were incapable of understanding because you could not make yourself understood, even though you continuously tried, if you were then punished, scolded, yelled at, drugged, restrained, shocked, put into a dark room because you expressed your frustration in the only way you knew how – by acting out, by becoming violent, by self harming – what would you do? How would YOU feel? At what point do our actions constitute torture?
Countless articles have been written about the abuse of disabled children and yet the abuse continues. Mother Jones published an article about the Judge Rotenberg Center in 2007, recently updated entitled School of Shock.
“The Rotenberg Center is the only facility in the country that disciplines students by shocking them, a form of punishment not inflicted on serial killers or child molesters or any of the 2.2 million inmates now incarcerated in U.S. jails and prisons.”
The words we use, the organizations we support, the way we speak to and about our Autistic children, as well as Autistic people, matters. I have done so many things wrong in raising my daughter, I cannot fit it all into a single post. I have so many regrets, I could fill several pages with the things I tried all in the name of “helping her.” Emma could not tell me how she felt about the various treatments and remedies I tried and I never thought to ask. I’ve written about all of this before, the DAN doctors, the specialists, the pediatricians, the stem cell treatments. If I sit and contemplate what I’ve done to my daughter with the best of intentions, I can barely move. I feel devastated. I know I didn’t mean to hurt her. I know I didn’t mean to harm her. I know. I did it because I thought that as her mother it was the right thing to do. Now I know differently. Now I know what I did was wrong. And the only thing I can do moving forward is write about it honestly. Talk about it. I can make sure I do things differently now. I can make sure I talk about these things openly, honestly, not because I am intent on beating myself up, nothing good comes of that, but because maybe, just maybe others may learn from my mistakes.
What we do, how we behave, what we say and how we say it matters. This is the ripple effect.
Emma's Hope Book 