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.
Emma’s teacher and I have been brainstorming new ways to increase Emma’s reading comprehension. We have tried the standard reading comprehension questions, which, as my friend Ibby pointed out, are typically filled with inconsistencies and problems. We’ve tried the more standard reading comprehension questions such as a story about a boy named Peter who takes a taxi to the airport. He gets on an airplane, buckles his seat belt and the plane takes off. The questions are then, “Who took a taxi?” The answer, obviously is Peter took a taxi. But the second question, “Where was he going?” is tougher to answer because we aren’t given the destination other than he took a taxi to the airplane and that isn’t actually accurate as he took the taxi to the airport, but the airport isn’t part of the story. It tells us he took a taxi and then got onto the airplane where he buckled his seat belt, so Emma answered, “Going to visit Granma in Aspen!” And while this isn’t the answer the creators of the questions were presumably looking for, it demonstrates that Emma certainly understands what the story is about and she is adding her own personal experience to the gaping holes the story provides. In addition, the story has been dumbed down so completely, if we are “presuming competence” then Emma must be going out of her mind with boredom.
So this is the question I come up against almost constantly – how do we make the material interesting and engaging, but not so difficult it becomes frustrating. How do we set Emma up to succeed and not fail without boring her? How do we deal with her resistance to reading and writing? I’ve made some headway by trying to do some playacting and using some of her favorite songs, but reading itself remains difficult for Em and she certainly doesn’t enjoy it. Maybe I am making it too complicated. Maybe I’m over-thinking the whole thing. Maybe it’s better to just present reading material and have her read it silently. Then type questions that she types the answers to. Maybe having her read aloud is causing problems.
What I am seeing over and over is that when she has trouble with a text we make the text easier, but I don’t believe that’s the answer. I’m not sure making it “simpler” is better. My biggest challenge with all of this is that this is not my area of expertise and I have no idea how to proceed. Emma’s teacher continues to try different things, but we haven’t found anything that seems to captivate, motivate or particularly interest her. I have to think about this more. I’ve printed out some of her favorite song lyrics, but there were too many words she couldn’t read and so much slang, I quickly abandoned the idea. I need to find reading material that isn’t so easy it’s boring and not so difficult it makes her frustrated. Looking back over the past year, I can see how well she was doing and how so much of that progress has stopped. I need to revisit those earlier concepts and see if I can find material that will pick up where we left off.
I haven’t been sleeping well. I’m having nightmares. I’m waking at 2:00 and 3:00 AM, unable to go back to sleep. I am worrying. I feel I shouldn’t be. But I am. The lack of sleep doesn’t help my worrying, it exacerbates it. There are a couple of things going on that are causing this. I am not managing the work/writing balance. I need to work. I don’t have a choice. I also like what I do. So there’s that. And I need to figure out how to balance work better.
Then there’s this… my writing, this blog and autism. Specifically my growing discomfort in writing about Emma, without Emma. More and more I try to keep my writing about my own issues and how they weigh on my responses and reactions, but even so, I end up writing about her. I asked Emma the other day, “Hey Em. Does it bother you that I write about you?” “Nyeah,” she said, which is her way of saying No. It sounds like knee-yeah when she says it and she scrunches her face up and smiles while shaking her head from side to side. “Okay, but do you know that lots and lots of people read the blog every day? Not just family or people we know,” I continued. She looked at me, nodded her head up and down and grinned. “Do you care that I put photos of you on it?” “Nyeah,” she said again.
I asked Nic what his feelings were. Without hesitation he said he wasn’t comfortable being written about or having his photo on the blog or Facebook or anywhere else. So Em tells me she doesn’t care or mind, but Nic certainly does and I can’t get rid of my anxiety. I didn’t do what so many bloggers have done. I never made my family anonymous while keeping our whereabouts a mystery. It never occurred to me to do that. I started this blog as a way of documenting Emma’s progress. That original concept has changed over the years. I don’t know how to keep writing about “our journey” without “all of us” writing it. Nic has no interest and whenever I have asked Emma if she’d like to write something, she’s declined. The truth is the blog has become “my journey”. I have moved away from feeling sad about my family and am now in a place of contentment. I feel tremendously lucky. I feel incredibly grateful for my two children and my husband and the life we have together. I no longer delineate one child from the other. I don’t see one as one thing and the other as something else.
We often talk about our children as though they grow up in a vacuum. We express shock when children bully each other and make schools accountable and yet our children are being raised in a culture where adults bully all the time. We are a culture of bullies. Of course bullying is a problem in schools, how could it not be? Look at the adults they see, hear and watch on TV and in the movies. They are surrounded by bullies, even bullied by those adults and yet we are horrified and shake our heads and wonder how this could happen? How could it NOT happen? Parents have strong opinions about race, sexuality and difference and their children often adopt similar beliefs. We want tolerance? We must begin with ourselves. We want to stop bullying? We must look to our own behaviors first.
So I ask myself: Am I contributing to a culture that thrives on putting others down? Do I do and/or say things to make people feel badly about themselves? Do I gossip? Am I judgmental? Do I engage in disrespectful conversations about those I do not agree with? Am I more interested in making my point than hearing another’s? What sort of person do I model for my children? I believe in tolerance, embracing difference, being of service, acceptance, but do my actions mimic my beliefs? Do I believe that what I believe is the “truth”? Do I consider those who disagree as inferior? I know I am guilty of all these things at least on occasion and a few more than occasionally.
I have an ideal for myself, it is a kind of end goal, the person I strive to be, but know I will never achieve. As long as I keep traveling toward my ideal I will have lived a good life, or, at the very least, a better life than if I don’t. I know I won’t do any of this perfectly, but I can keep trying. I can keep holding myself accountable. When I make mistakes I can admit them, make amends and do all that I can to try and make the necessary changes so I won’t repeat myself. I don’t know what the answer is to my questions and discomfort. But I’ll keep looking, asking and being aware of how I feel. Once I’ve figured it out, who knows? But until then I’ll keep writing about it. After all, this blog is less Emma’s Hope Book and more “A Journey.”
New York City – Built as a Courthouse in 1874-1877, later used as a Public Library this clock tower remains standing
When Emma was diagnosed as Autistic, we read that autism was an “epidemic”. I remember the figures – 1 in 166. In 1980 the rate was 1 in 10,000 according to others it was more like 1 in 2,500. Andrew Wakefield had published his “study” of 12 subjects in The Lancet, regarding his belief that vaccines were linked to autism, six years before. The Lancet’s retraction of the Wakefield study did not occur until 2010, and the fallout was, at the time of Emma’s diagnosis, being widely felt. What I didn’t know, until much later, was that Wakefield had applied for a patent just nine months prior to the publication of his, now discredited, study for a new MMR vaccine that he said was safer. Wakefield, it seems, stood to make an enormous amount of money. Yet I and many parents like me wondered if there was truth to Wakefield’s “findings”. Despite subsequent studies showing that his findings were false, people wondered. After all, autism was an “epidemic” so what was causing the epidemic? It seemed vaccines provided an answer.
Except, what if there was no epidemic? What if the word epidemic was being used by organizations intent on raising money? These were the questions I began to ask. If autism WASN’T an epidemic, then where were all those Autistic children when I was a kid? And where were they now? Why didn’t I know dozens and dozens of Autistic people? They should be everywhere I concluded and since I didn’t know of any personally, I decided to look for them. So began my search for Autistic people. (I know my wording sounds archaic, but I actually meant for it to, because it illustrates my thinking not so long ago.) I periodically googled phrases like – “where are all the autistic adults?” or “Autistic adults” or “Autistic adults in the work place” or anything else I could think of that might lead me to them. I found very few. I came upon Temple Grandin and Donna Williams, whose books I immediately read, there were a handful of others, but the shelves of the “Special Needs” section of the bookstores I frequented were filled with increasing numbers of memoirs written by parents, not Autistic people. When more and more people began blogging, I started googling “Autistic blogs” and came up with not a one. For years I would periodically look and when my searches came up empty, I concluded – It must be an epidemic. It seemed a logical conclusion. And eventually having concluded that autism was in fact an “epidemic” I stopped looking for Autistic adults.
Then two things happened within a six-week period. A follower of this blog sent me a link to Julia Bascom’s blog – Just Stimming and another parent encouraged me to read the anthropologist and father of an Autistic child, Roy Richard Grinker’s Unstrange Minds: Remapping the World of Autismwho suggests autism is not an epidemic and the current rates are a more accurate reading of what has always existed. It was a one-two punch; I began to question everything I thought I knew. From Julia’s blog I began reading and reaching out to Autistic bloggers. Through my, at first tentative, communications I began to find many, many more. It was literally like discovering an alternate reality, and as mind-blowing as anything I’ve ever experienced. The more I looked, the more I found. Within eight months I went from not personally knowing any Autistic adults to knowing hundreds of people who are my age and older.
One friend of mine and I were discussing all of this the other day. He pointed out that many people, like him were beaten, often brutally by their parents to make them stop their undesirable behaviors that might make them “stick out” or in any way noticeable. He said, “People like me would hide our Autistic traits as best we could. We were still considered the weird kids and the outcasts, but we were not called Autistic.” He reminded me that he and others like him were trying their best to remain as “inconspicuous as possible because the only signs we had were the “Kick Me” signs that would be put on us by bullies.” He then went on to say, “We had to do our best to be invisible and/or find a way to blend in or hide to stop the beatings by family and class-mates.”
As I think about all of this, I have more questions. What about the autistic girls who were like my daughter? Would my daughter, had she been born in the 50’s, have learned to “pass”? And if so, what does that say about our school system, because Emma is in no way near grade level? Would she have been deemed learning disabled, but taught how to “behave appropriately”? Would she have, through punishment, been able to conform? What about her language? Would she have just been thought a “quiet” child? The little girl who, if she’d been punished enough, learned to sit silently in the corner? At what cost would this have occurred? Or would we have been told to institutionalize her for the “good of the family”? Would we have been advised to save our son and ourselves from being “dragged down”? Has our thinking changed so much?
I ask these questions honestly. It took me a very long time to find all those Autistic adults I’d been looking for since my daughter was diagnosed in 2004. When I was still looking, I never, not for a second, thought in finding, I would also find hope. It never occurred to me that I would form relationships that are, not only important to me, but relationships I cannot imagine being without. Friendships that are vitally important to me, people I love and look forward to seeing and spending time with. People who would patiently explain to me what it was like growing up in an era that did not “recognize” autism. People who try to help me understand what it is like living in a society that does not want to see or hear them. People who do not enjoy the basic rights I enjoy and do not even think about. People who are condemned, abused and misunderstood. And yet, that is exactly what happened.
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”.
Yesterday the interview (published on Huffington Post, click ‘here‘) with Henry, the 13-year old non-speaking Autistic boy, son, brother, friend, student and all around amazing kid who has been denied enrollment to the public school across the street from his house went viral. At the moment it has 152 comments and over 1,000 people have “liked” it, with almost 400 people sharing it on Facebook. The comments began pouring in yesterday afternoon. A few were particularly troubling for a couple of reasons. The first being that a completely uninformed person(s) made broad sweeping generalizations about autism while bolstering their opinions with statements like this: “and then there are the non verbal Autistic who need constant care. One can’t tell if they understand language, but they can’t speak for some reason. I do know this as a fact from the Autistic that I’ve worked with in my youth.” Another commenter suggested, “Maybe he should consider speaking …..If he wants to go to that school so badly…” And yet another said something about how Autistic kids “drag” the rest of the students down. All of these comments were uninformed, but the thing that was actually frightening was when another commenter then referred to the first commenter as an “expert”.
So I lost it. Completely. Utterly. Lost. It. Heart racing, hands shaking, head pounding, throat constricted, feeling nauseous, lost it… Which is how many who are marginalized and live with prejudice, feel all the time. That feeling of terror that their lives are threatened and in real danger as a result of incredible ignorance. I should have walked away. I should have done some breathing exercises. I should have meditated. But I didn’t. Instead I reached out with words and hit back. I used words to hurt. I used words to wound. I didn’t ask questions. I didn’t wait for more information. And here’s the thing, I don’t know that I was wrong to do so. I feel ambivalent. I feel I should regret my actions more than I do.
I responded with this: “…the degree to which you misunderstand Autism is actually more than frightening, it is terrifying. That you also worked with this population says more about the tragic state of the place you worked and their hiring policies, not to mention their training, which appears to be none, than your profound ignorance.” To which he responded, “I wasn’t hired to do anything. The camp/school had normal and special kids and they had that one Autistic boy. I was nine. I wasn’t hired.”
People in the comment thread were describing a man as an “expert” who claimed knowledge of autism because he met an Autistic boy when he was nine years old. At camp. Nine. And I thought of Joe Scarborough and his comment about the Aurora shooter. I thought of Simon Baron-Cohen who actually is something of an “expert” and yet I completely disagree with his conclusions. I thought of all the doctors, researchers, neurologists and “autism specialists” I’ve met, spoken with and consulted over the years, many of whom I do not agree with and some whom I do. But the point is, so much of this is up for grabs. There is a great deal of information out there that all of us have access to, but how do we know what is correct? We’ve got doctors drawing conclusions that seem illogical and even irresponsible, while others whom we might agree with. There are some very smart people out there working hard, publishing their work, making informed opinions, but how do we know who to believe?
I don’t. What I do know is that anyone I read or hear I try (usually) to find out more about. Who is this person? What are their credentials? What is their hands on experience? And I get a second opinion from those who are autistic. There are a number of people, all Autistic whom I particularly respect (this is by no means a comprehensive list and in no particular order, just thinking off the top of my head; please feel free to share anyone else I may have forgotten) Judy Endow, Lynne Soraya, Emily Willingham, Elizabeth J. Grace and Michelle Dawson.
A commenter on this blog wrote a hilarious comment about “Dr. Mom”, “Nurse Mom” and “Psych Mom”. It was not only very funny, it was relevant to all of this. Who do we believe? Hopefully not the guy who states they “know this for a fact” as compelling as the man might be for some. And I’ll just add this; don’t believe me either. I’m a mom. I’m a writer. I’m an artist. I have opinions. Sometimes I have really strong opinions, opinions that I think are right. But I also know that over the years as I learn more, I no longer agree with many of the opinions I held a year ago, two years ago, three years ago. My opinions change. All I know is that I want to keep learning. I want and try to keep my mind open. Sometimes it’s really hard. Sometimes I feel tremendous rage. I don’t learn when I’m that angry. But hopefully I calm down enough that I can go back to learning.
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.
Ever feel compelled to write about something that you’d just as soon not talk about? I’m feeling that way about today’s post for a whole host of reasons which I’ll discuss. But before I do, let me just say, this is another one of those topics people feel strongly about. I’m going to launch in anyway, because I’m either a glutton for punishment or I just can’t help myself or maybe, just maybe, this will strike a chord for others who may find it helpful, but please do remember I am not pretending to be an expert about any of this. I am going to relate my story. If it resonates with anyone else, great and if it doesn’t that’s fine too, but it is one of those topics that needs to be discussed. So let’s do that.
THE DIET.
The gluten-free, casein-free diet was one of the first things I read about after receiving Emma’s diagnosis. I have to add that when I read about it I had enormous misgivings that had nothing to do with Autism or my daughter. You see, from the age of fifteen until my mid-thirties I had an eating disorder. I compulsively over-ate, I sought comfort and solace in food, but I was also morbidly afraid of gaining weight so I would eat enormous amounts and then taught myself to vomit. Somewhere along the way I became anorexic too and over the next two plus decades yo-yoed between my all time lowest weight of just under 110 pounds to over 160 pounds. Food and my weight were nothing short of an obsession. In truth, I was an addict. For those of you who recognize the addiction analogy with food I don’t need to say more, but for those of you new to this idea, I’ll just say this, food was as addictive to me as heroin is to a junky, the only difference being I can’t ever just stop eating. I have to “play in the pool of my addiction” as my fabulous husband likes to say.
I’ve written about all of this ‘here‘ ‘here‘ and again ‘here‘ for those of you interested in all the gritty details.
In my mid-thirties I found help from other food addicts who were no longer active in their addiction. I was able to form a whole support team who held my hand, talked me off the ledge, who became my allies and eventually I was able to stop the cycle of binging, puking and self-hatred that went along with those behaviors. By the time I gave birth to Emma I had more than five years of freedom from my food obsessions. (Which at the time seemed like a VERY long time!) I had my wonderful support group in place and a road map of tools and behaviors to help guide me. So when I began reading about “the GF/CF diet” and how critical it was to implement should Emma be one of those kids who responded to it, I had a lot of “feelings” about it. There was no question whether or not I would put her on it, but I also knew I had to be careful because of my history and what it would inevitable kick up for me. So I called in my supports, made sure I kept honest, made sure my “team” of recovered addicts knew what I was about to embark on and took a deep breath before plunging into that dark water, which I hoped might help my daughter.
I won’t describe in great detail what happened as I’ve written about the diet in detail, ‘here‘, ‘here‘, ‘here‘ and ‘here‘. You can also go to the right hand side bar on this blog, type “diet” into the search box and you’ll be taken to everything I’ve written on the topic over the years. The short version of all of this is – we saw little change. Emma’s constipation was unaffected, there may have been a slight increase in eye contact, but not enough to warrant the trauma the diet was causing Emma, who continued to drop weight at a frightening rate. I wrote about the trauma of the diet and it’s aftermath ‘here‘. But I must add that her trauma was a significant and distressing piece to all of this. It is one thing for an individual to decide they must stop eating something because they know it causes their bodies distress, or allergies that are clearly identifiable and another thing to put a non-speaking child on a highly restrictive diet that they cannot comment on and which is only deemed successful by a parent who is doing their best to watch for measurable changes.
As a new parent who is just embarking on all of this, what do you do? It was overwhelming for me. I remember vividly how frightened I was. There was so much information, often conflicting and I remember feeling the stress and anxiety all that information caused. I also remember feeling terrified that I was doing everything wrong, that I was harming my daughter, setting her up to have an eating disorder further down the road and since my eating disorder was all consuming and eventually caused me to contemplate suicide, this was no small concern. I became convinced that there was a right and wrong way, that if it worked it was “right” and if it didn’t it was my fault because I had done it “wrong”.
I don’t feel particularly comfortable giving advice to other parents. As I wrote in the first paragraph, this is one story and it happens to be mine. It’s the only one I can tell, but that doesn’t mean it will be yours. So here’s the only question I can answer – If I had to do it all over again (thankfully I do not!) would I have put Emma on the diet that first time? The answer is – 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. There are enough people, regardless of their neurology, who have benefitted enormously from modifying their diet. There are too many anecdotal stories of significant change from those who do benefit to ignore it as just another bit of quackery. BUT, and this a big but, no diet, in my opinion, is capable of changing an Autistic child/person into a non-Autistic child or person. Or as Karla Fisher gave me permission to quote her said, “… it can and may seem like the autism goes away but it is important to remember that it does not. The EF (executive functioning) and SP (sensory processing) issues get reduced but the context difference will always be there so child will always need support.” *Parentheses are mine.
So let’s discuss and if you disagree, explain why, if you agree, please say so because I really love being agreed with! 🙂 And if you have some other thoughts about all of this go ahead and say what they are, because this topic is one that comes up all the time and it is confusing, complicated and for new parents can be the cause for tremendous anxiety and worry, not to mention the upset and trauma it can cause our children.
Emma – November, 2011 – after five weeks on the diet
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.
One of the best arguments against ABA is Michelle Dawson’s article, The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA industry. If you google Applied Behavioral Analysis you will see glowing reports of its efficacy for more than 30 pages. I actually stopped at the 30th page only because I didn’t have time to continue. The first book I read on the subject of Autism was Catherine Maurice’s Let Me Hear Your Voice which details how ABA saved two of her children’s lives from Autism. (I use this language as it is the language employed by the author.) Catherine Maurice also likens Autism to cancer and ABA as the necessary chemotherapy. The whole acceptance model obviously is not employed when thinking in these terms, how could it be? And perhaps this is the single greatest problem when discussing ABA. Ethics is not a word one associates with chemotherapy. Why would it be? The person considering chemotherapy is doing so because to not do so is to face the very real possibility of death. When the language around autism becomes synonymous with cancer, one is saying to be Autistic is to have a death sentence. And while that may seem like hyperbole to many parents and Autistics, it is not so far from the truth when we were informed of our daughter’s autism.
When Emma, then two years old, was given her diagnosis we were told, if we employed 40 hours of ABA a week she would undoubtedly be mainstreamed by Kindergarten. This was what we were told. This is what we hoped for. This is what we chose to believe. We were also told that a bio-medical approach when coupled with ABA was ideal and so we did that too. We fought and received 40 hours of ABA a week, took Emma to a homeopath, who through more than a dozen tinctures, did a homeopathic version of chelation (i.e. removed heavy metals from her system). I also took Emma to a cranial sacral doctor as well as had her on a gluten-free casein free diet. Despite all of this, when she did not show the sort of monumental leaps promised, the ABA therapists said it was because we were at fault. Never once did any of the therapists, supervisor or agency waver in their firm belief that ABA was a solid, “scientifically” backed methodology. It was spoken of as fact. We were the only variable. We then did what they advised, we put Emma in an ABA based preschool, continued our own ABA training so we could continue doing it at home, hired an ABA trained therapist to help us implement ABA in the evenings and weekends and again were reassured that she would be mainstreamed by the time she was in Kindergarten. We didn’t have any alternatives as far as preschools went, so I ignored my gut, my maternal instincts, warning me that this was NOT a method I would ever allow used on my neurotypical son and yet, was allowing to have implemented for my autistic daughter.
After a year, not only had Emma not progressed as the school had hoped, but she was actually regressing and was, what the principal informed us, a “red flag”. The teacher, obviously aggravated with Emma’s lack of progress even suggested that this was Emma’s fault, that she was “refusing” to comply and expressed her irritation with us. Emma, at the time was just FOUR years old. Looking back on those first few years is surreal. A four year old was being blamed and words like “manipulative” and “misbehaving” were used. I’m going to interrupt this story to acknowledge, this is one story. One family’s experience and is an anecdotal tale. In no way do I believe for a moment that because ABA did not produce the results so many believed it would that our story is somehow scientific fact. What I will say though is that ABA is, in my opinion, a flawed, at best, methodology and one that we do not, would not ever consider using with our NT son. Therefore an important question must be asked – Why is that?
Why do we not use ABA for the neurotypical population? This is where the ethical question must be considered. This is where the “science” behind the use of ABA begins to fray. If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems. ABA can only really work if we view autism as a deficit and something that must be removed. Autism is a complex neurological difference that cannot be removed. I do not believe for a moment that there will ever be a “cure” for Autism. It was explained to me by a neurologist that Autism is a web of neural pathways branching off and fusing producing new neural pathways, so random, so complex making it impossible to single out any one pathway allowing for a simple removal to produce a non autistic person.
I don’t believe anyone would argue against helping an Autistic person cope with the challenges they face, but the larger question is how do we do that? Restraining someone who needs to concentrate by flapping is not the answer. Insisting children sit quietly so they can “attend” and be “table ready” when flapping or twirling a piece of string actually helps them listen and concentrate does not make any logical sense. Insisting that the non autistic way of communicating is the ONLY way to communicate is limiting and unhelpful to those who cannot express themselves by speaking. Viewing Autism as a list of deficits that can be corrected through a series of discrete trials will not make an autistic person any less autistic. Teaching Autistic people how to ‘pass’ so they can blend in better with non autistics is similar to the belief that a closeted gay person will live a happier and more fulfilled life by being closeted than someone who is “out”.
I don’t agree with the basic tenets of ABA because it is a methodology based in looking at those it treats as deficient and inferior. This is not a model I believe will help Autistics or any of us in the long run. We, who are not autistic are in a position of power, we are the majority, we are the ones making the rules. That does not mean the rules we make are correct or even right. We must be willing to examine what our objective is in using ABA. Is the objective to make someone blend in better and if so we must ask ourselves why? Before ABA is considered, ask yourself, is this a treatment you would employ for your neurotypical child? What message are we sending our Autistic children? What will this message do to their self-image? What message will be internalized, a message they will carry with them well into adulthood? Will this message serve them, make them feel good about themselves, help them lead happy, fulfilled lives. After all isn’t that what ALL parents want for our children?
*I urge any who are reading this to read what autistic people are saying about ABA. Ido Kedar, a non speaking Autistic teenager has written a book, Ido in Autismland where he criticizes ABA and describes why. Any of you who are ABA therapists, it is incumbent upon you to read his book. He is one of a number of Autistic people who are speaking out about ABA.
Emma has asked to have a sleepover for months now. She doesn’t want to have ‘a’ sleepover, as in a single sleepover, she wants to have sleepovers, the way her brother Nic does, almost every weekend. She wants to have time away from us, where she is with another family and their children. She wants to have the experience most parents and children take as a matter of course. I’ve had parents say to me, “Oh sleepovers and play dates are highly over rated, she’s not missing much.” But the truth is she IS missing a lot and the fact that she so desperately wants to have a sleepover is something I would assume ALL children desire. I doubt any child doesn’t hope for this, whatever their neurology. My guess is those who don’t ask for a sleepover are doing so not because they don’t want one, but because they do not have the ability to ask or communicate their wish.
The question has been how to orchestrate sleepovers for Emma when she’s never been invited to have a play date, forget a sleepover. We have tried to have kids over to our house, but they all end up playing with Nic and while we’ve been able to get everyone to play a few games of duck, duck, goose, it still ends up being mostly a play date for Nic. Last spring, Emma’s therapist, Joe invited Em over to his house for a sleepover with his wife’s god-daughter, and Emma had a great time. But Emma wants more than a one time event and increasingly Richard and I have discussed how to get Emma over to people’s houses who have children Emma considers her friends on a more regular basis.
So while I was away at the AutCom Conference this weekend, Richard decided to do what he does best – take matters into his own hands. He picked up the phone and called our friends asking them if Emma could have a sleepover at their house. This is not something I feel comfortable doing. It feels like an enormous imposition, I wouldn’t want to put people in an uncomfortable situation. I wouldn’t want them to feel uncomfortable saying no, I wouldn’t want to feel the sadness I would feel if they did choose to say no. Just as I cannot use restrooms in restaurants or stores unless I’ve actually bought something, I cannot call friends and ask if my child can come to their home for a sleepover… but Richard can and did. And they said they would be thrilled, in fact they said they were really honored that Em had asked to come to their house.
These are good friends, friends with twins, Nic’s age. The twins, J & G have known Emma her entire life. We adore all of them and have spent many a Sunday hanging out together. When Emma heard that they’d invited her, she jumped up and down, threw her arms up in the air and twirled around while saying, “You get to have a sleepover at J & G’s house! So excited to see J & G!” Then she ran into her bedroom and came back out with her backpack filled with her nightie and a blanket. Sunday night Richard and I received a text with these photographs. (We have been given permission to post these photos.)
Emma used her skills of persuasion to get everyone to play a rousing game of Duck, duck, goose.
J & G & Em
The sleepover was a wild success!
When Emma came home the next day she ran over to me, threw her arms around my neck and said, “Do you want to know Emma’s sleepover was so much fun?”
“Yes! I do want to know that!” I said.
“Emma had fun at Emma’s sleepover!” She said and then ran into the other room to find her dad. A few minutes later she came back and said, “Go to Gabby’s house? Have a sleepover with Gabby?” (Gabby is one of Emma’s cousins.)
I will have to take a page from Richard’s book, gulp down my nervousness and do something I would normally never do. I will have to call my cousins and ask. Maybe they’ll say no. Maybe they’ll say yes. Either way I have to ask because my daughter needs to do this. She needs to have these experiences, they are important and my shyness and concerns have to take a back seat to the more important issue here, which is to do what I can to have Emma included. The Autcom Conference gave me a glimpse into how important inclusion is, not just to those who are routinely excluded, but to all people; we all benefit from inclusion.
The Autcom conference was a fleeting glimpse into paradise. A tiny taste of how the world could be were we accepting of each other, treated all people as equals and with respect, without prejudice, without assumptions, without bias. Autcom was a window into how the world could be, but isn’t. Not yet. Words do not do this conference justice. How could they? How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea. A vision. How do you describe that?
Accommodation – it’s a word we hear, but what does it really mean? At the Autcom conference it meant waving hands at the end of a presentation instead of clapping, lowered lights, snacks that included gluten-free and casein free items and non dairy alternatives. Accommodation meant no one stared disapprovingly at anyone who stimmed or made noise or got up to leave in the middle of a talk. Accommodation meant people were polite and moved chairs that might be blocking someone’s ability to come or go. It meant using a microphone or repeating a question for those who weren’t able to hear the first time. It meant being respectful and considerate when someone came up to peer at your name tag and it meant understanding that when that person gently touched your hand after a presentation it was their way of thanking you and I defy anyone to not see the beauty and love in that. Accommodation meant slowing down while someone typed their answer or question or thought. It turns out accommodation means being a thoughtful, considerate human being who is respectful of others. How is it this isn’t done automatically, as a matter of course. How is it that we as a society have drifted so far from this very basic and easy way of being in the world?
The single biggest issue I had with this wonderful conference was that there were too many terrific things going on at once and it was impossible to see and hear everyone and everything. To give you an example of this – on the first day of the conference after Ari Ne’eman’s welcome and an opening keynote address by Jennifer Paige Seybert, was Savannah Nicole Logsdon-Breakstone’s presentation – Loud Hands Project’s Neurodiversity 101. At the same time, Larry Bissonnette, Pascal Cheng, Harvey Lavoy and Tracy Thresher were doing a presentation on Supported Typing, which I really needed to go to in order to assess whether this might be something we could use to help Em communicate more effectively, but next door to them was Nick Pentzell, Hope Block, Jacob Pratt and Autumn Dae Miller presenting “Rated “R”: That Oh-So-Difficult Topic”. I cannot tell you how much I wanted to hear them too and later heard from others that it was a not to be missed presentation, sadly though, I missed it. Human Development Journey was presented by Cecilia Breinbauer about using DIR, which was the method Richard and I were trained in by the late Stanley Greenspan, after abandoning ABA.
Ari Ne’eman
Jennifer Paige Seybert
That evening after dinner and a wonderful performance by Jordon Ackerson who reminded me of Emma because of his beautiful voice, we watched Wretches and Jabberers, with a Q&A with Larry and Tracy. This was my third time watching this documentary, which I posted about last month ‘here‘. I asked them about self-injurious behaviors, something both engage in during the film. I asked for their opinion about the commonly held belief by many that SIBs should be thwarted and how parents and caregivers are often unsure how to deal with this. Tracy typed, “That was years of frustration with no way to reliably express myself working its way out through my behavior the problem was lack of communication which pissed me off.” Larry typed, “I lived in an institution so I was locked in arms of restraint its legal but immoral and only represses anger nothing looks more kind than softly spoken words and lit up smiles.”
Jordan Ackerson
Tracy Thresher
Larry Bissonnette
Read that again. “… nothing looks more kind than softly spoken words and lit up smiles.” The presentations were terrific, but it was what is possible that this conference represented, which affected me most profoundly. The AutCom conference was an example all organizations, who say they are interested in Autism and helping those who are Autistic, should follow. Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more. At my presentation there were more Autistic people than not, for which I was truly honored by. The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness. Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together. Accommodation and inclusion means we ALL benefit.
I am in Baltimore at the AutCom Conference. Since the conference begins first thing in the morning, I arrived yesterday afternoon by train. As I waited for the shuttle service to arrive I witnessed a group of men yelling at each other. Suddenly one enormous man lunged at another, grabbed him by the throat and began to strangle him. Several other men jumped in, amidst lots of yelling and swearing and finally were able to pry the two apart, only to have the one who had been strangled race after the strangler, shouting descriptive words which I cannot repeat, mostly because other than a few F bombs, I couldn’t figure out what he was saying, though by the look on the attackers face, they weren’t friendly. After witnessing two men practically killing each other, I was greatly relieved to see the shuttle pull up to whisk me away.
The van driver stopped only once to pick up a party of six elderly men who were off to a business retreat. The one gentleman seated next to me after having an animated conversation with his wife, though I’m not sure about her identity, but was clearly someone he knew well and felt comfortable hanging up on – twice – and then called back. Exhausted from all that, he promptly fell asleep listing so precariously in his seat that I feared he might just keel over completely. I scooted as far away from him as was physically possible lest he fall into my lap like a felled Redwood.
The drive was otherwise uneventful. Much to my delight the hotel looks out on a beautiful lake where I saw this… I believe this is a White Egret. I could be wrong, but in Northern California, where I grew up, I remember seeing one once and it looked a great deal like this.
A panoramic view of the lake.
Sculpture with the lake in the background…
The conference begins at 9:00AM this morning with a welcoming ceremony by Ari Ne’eman, followed by a keynote address by Jennifer Paige Seybert. I intend to then go to Julia Bascom and Savannah Nicole Logsdon-Breakstone’s presentation – The Loud Hands Project. However Larry Bissonette, Pascal Cheng, Harvey Lavoy and Tracy Thresher (of Wretches and Jabberers) are also presenting at the same time, and I’d love to hear them too. The entire conference is a who’s who of wonderful presenters. I don’t know how anyone is able to choose!
It’s all very exciting and I’m so happy to be here!
A year ago if you’d asked me what my single greatest fear was, I would have told you it was what would happen to my daughter when my husband and I both died. This fear was so worrisome, so looming that I often stayed up at night worrying. Well meaning people would reassure me that “things will work out, they always do” or “group homes aren’t so bad, many are run by loving, caring people”, but none of this gave me solace. My fear was the driving force behind my desperate pursuit of various medical interventions and treatments for my daughter. This fear, more than any other was what drove me to search for a “cure”. When I thought of my daughter’s future I saw one of those dark, formidable, gothic institutions, now used as set locations for horror movies. Once my mind had latched on to that visual image my fear became so overwhelming, my throat so constricted, my body so awash in terror I would literally shut down, like an overloaded circuit. Fade to black.
So what changed? I began to read things like this –
Amy Sequenzia, a non-speaking, writer, poet, Autistic self-advocate from her poem Feeling Good:
“Feel the warmth of another soul Ban the thoughts that block the light Refuse to hear what hurts, listen to the cry for help behind it
Well-being, feelings of unity We are all the same”
“If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”
“But I’m not invisible anymore. I’m here, and I’m me, quirks, obsessions, passions, stims and everything else that makes me unique. Look out world, here I come.”
There were so many others, so many voices out there, somehow reading these blogs calmed my fears enough that I was able to begin dissecting them. I was able to pause, even for a moment, allowing me to ask, what is this? What is this fear really? And although my immediate answer was that these were fears based in very real, logical assumptions, I was able to see that they were just that – assumptions. They were still not reality. Not yet. I was also able to realize those fears were causing me to act in irrational ways. My thought that the fear was a healthy, natural response to what I believed to be the reality of the situation, prompting me to pursue all kinds of risky, unproven and untested “treatments” for my daughter’s autism was taking all of us down a dark, dark path. That fear caused me to behave differently toward her, but I couldn’t see that until I’d stopped and saw how my behavior toward her changed. When I was able to stop, just for a moment and examine the fear, the fear began to fall apart.
My fears were based in things I assumed were the inevitable consequence of what I believed my daughter was or wasn’t capable of. But this was not based in fact, I don’t have the ability to see inside my child’s mind. In addition my fears were clouding all the things she was doing that I ignored or couldn’t see or hear. Every single day, my daughter displays her vast intelligence. When I read the writings of Autistic people occupying every point on the so-called spectrum, I began to see that my assumptions, what I had assumed I knew and believed were not based in anything other than that. It was at that point that I realized I had a choice. I could choose to believe in her incompetence and the inevitable outcome this perceived incompetence would take us or I could choose to believe her competent, making that looming horror no longer a given.
As I wrote recently in a comment to someone, I chose the latter because to do otherwise and be wrong would be far, far worse. This is something I cannot risk or would be able to forgive myself for. But there’s another piece to this that is also important, and that is when we assume great things are possible, great things tend to happen. It’s human nature to strive for independence, to communicate, to connect, ALL humans want this. Given a little encouragement we can do things we never imagined possible, but given nothing or criticism we wilt, become sad and angry. My belief in my daughter will not change the very real challenges she faces, but it does and will help her far more than if I do not.
Emma's Hope Book 