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Tag Archives: Autism
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Posted in Autism, Autistic Blogs, Blogs By Autistics
Tagged Autism, autism blog, autistic, Autistic Blog, Blog about disability and Autism, blog written by Autistics, collective blog, community blog, disability, disability blog, Facebook
Progress
It’s a little ironic that this blog began as a document of my daughter’s “progress” (which, at the time I defined as – becoming indistinguishable from her non autistic peers) and has evolved into a document of my progress and movement away from exactly that kind of thinking. I don’t really have a problem admitting the mistakes I’ve made, which is probably a very good thing as I am not going to get to a point where I never make any. But I do my best to learn from them. I try hard not to beat myself up. Sometimes I’m more successful at that than other times, but that too is a lesson I learn from. I didn’t get to any of this on my own. The progress I’ve made regarding autism, how I think about my daughter and because of that thinking, how I interact with her, is a result of the help I’ve been given. Help given to me by those who are Autistic.
I would be dishonest if I didn’t admit to times I’ve felt confused, afraid, unsure of myself, and incredibly vulnerable more often than I’d like, but that’s progress too. There was a time in my twenties and early thirties when I did pretty much anything not to admit I ever needed help, let alone asked for it. Thankfully I’ve progressed. So last night when Richard told me about running into one of Emma’s early intervention therapists and how it seemed she was surprised that Emma was not able to carry on a conversation with her, I felt a wave of something I couldn’t immediately identify. First I cycled through thoughts of “I don’t want to hear your feelings on this,” to “I wish you hadn’t told me about this” to the overwhelming urge to stick my fingers in my ears and yell, “LALALALALALALALA I CAN’T HEAR YOU LALALALALALALALA!!!”
Yeah. I know. That would have been childish of me. And by the way, I’m 52 years old. You have no idea how much I wanted to do that. *Shrugs, then smiles.
Progress…
So after all that, after we got into a fight about something unrelated that I can no longer even remember what the topic was, I realized what I was feeling. I felt the weight and force of my feelings. Feelings I really prefer not to have or feel. Ever. Shame. Feelings of shame. Yup. Shame. Like a massive metal door closing in on me, I felt shame. And then I felt shame for feeling shame. Fade to black.
Because that’s how this works right? We feel something and then instead of being able to sit with the feeling, work through it, we add to it by feeling shame for feeling the initial feeling of shame. Who came up with this stuff? If it wasn’t so damn painful it would be beautiful in its perfection! As a friend of mine and I like to say, it’s a “pick your poison” situation. Whichever way you go, it’s going to hurt. So yeah, I chose to feel the initial shame and tried hard to be aware of my judgment and that really loud, obnoxious, critical voice that loves to shout at me given the slightest opportunity. “Shame. Feeling shame. Lots of shame,” I said. Meanwhile Richard had moved on to the New York Times Crossword puzzle and looked at me with confusion.
To be clear – This isn’t about my kid. This has nothing to do with her, who she is, her neurology, what she did or didn’t say. This has nothing to do with Richard running into one of her Early Intervention therapists or perceived expectations, either mine, his or the therapist’s. This isn’t about autism. This isn’t even about parenting. This is about perfectionism. This is about my shame for being an imperfect human being. That’s what this is about.
Progress…
Posted in Autism, Parenting, Perfectionism
Tagged Autism, autistic, being human, Parenting, perfectionism, progress, shame, vulnerable
Early Intervention
Last week I wrote a post, Autism “Experts” about how I used to attribute any action or sentence uttered by my daughter as evidence that whatever therapy or treatment we were employing at the time was “working.” It was my way of staving off the persistent fear that if we were not intimately involved in a constant barrage of therapies, she would make no progress or whatever progress she made would be less, than if we devoted every waking hour to constant involvement and interaction. Suddenly every waking moment became a moment we must engage, interact, teach and push for more.
We were told about the human brain and the small window when the brain’s plasticity is at its most optimal for learning. From the moment that diagnosis was handed to us, we felt we were in a race against time. Any time we sat down to read the newspaper or took ten minutes in our daughter’s presence to relax and just be in each other’s company without “working” with her was reason for guilt and the feeling that time was slipping away from us. The nagging worry, if only we did more than we already were, she would be better served, is one I remember well and can still feel the residual stress of.
I want to clarify a couple of things that perhaps were not entirely clear in last week’s post. I do not believe an autism diagnosis means we sit and do nothing to help our children, but I believe there must be a balance. What we did was detrimental to all involved and I do not encourage anyone to follow in our footsteps. All our hard work, the round the clock therapy, (more than 40 hours a week) the training, the evenings and weekends spent taking over once the therapists had gone home, did not ensure our child’s brain was rewired. She was not mainstreamed within a few years.
This idea, popularized by the book, Let me Hear Your Voice by Catherine Maurice was NOT our story. I do NOT recommend that book, in fact I urge parents to avoid it. It was the first one recommended to me by Emma’s ABA supervisor and it set us on a very painful road of discouragement and disappointment, but perhaps even more importantly and destructive, it put into play the belief that Emma’s neurology could and should be “fixed.” And it pushed us further away from any degree of acceptance and eventually embracing and yes, celebrating our daughter for the amazing, uniquely beautiful being that she is.
That early intervention is so often equated with ABA is worrisome to me. I hope this is changing. People suggest it is, but when my daughter was diagnosed it was a given. It was ABA or nothing. Agencies offered versions of ABA, but it was still ABA. My child was not helped by ABA. I would not have done it could I do it all over again. I’ve written about ABA before ‘here‘ and ‘here‘. I know many of you feel it has helped your child, many have written to me and described some version of ABA that bears no resemblance to the method used with my daughter. Evidently ABA has, in some cases, changed. The bottom line is this – Does it presume competence? Does it respect the child as a human being? Is this a method I would use on a child who was not Autistic?
What I would have done when my daughter was first diagnosed was OT. I would have enrolled her in gymnastics, trapeze school, swimming and I would have introduced her to a stencil board and AAC (Augmentative and Alternative Communication) devices. I would have begun using Proloquo2go and many of the terrific Grasshopper apps had we had iPads when Emma was diagnosed. And I would have begun working with Soma Mukhopadhyay. In an ideal world all of these things would be a given. All of these things would fall under “early intervention.” All of these things would be available to ALL families despite their level of income. These are the things that have proven to help my daughter. All children may not respond to the things she has responded to. But in an ideal world “services” would include an evaluation determining what things would help and a plan would be made.
In last week’s post I questioned those who are not Autistic and have little or no contact outside of a professional setting to those who are and yet call themselves “experts.” I was not referring to the many professionals who are intimately involved in the autism community (and by that I mean the community of people who are Autistic) who have dedicated themselves to helping our kids and us so that we can be, not only the best parents we can be, but also equipped with information that will help us help our children flourish. There are a great many of you out there, and to you I am incredibly grateful. To all those professionals in the field of autism who are not familiar with Autistic blogs, books or do not have have any Autistic people in your life who are friends and colleagues, please become familiar with Autistic people’s work so you can tell parents. Many parent’s first contact with anyone involved with autism, outside of their child, will be a therapist.
Please make sure parents know there is a growing population of adults who share our child’s neurology. Even if that means just giving us a list of blogs and books written by Autistic people. Ideally there would be programs in place that employed Autistic people, just as social workers, therapists, parent liaisons are employed. Autistic people who are interested in interacting with new parents and their newly diagnosed children would become a part of “Early Intervention.”
Ideally we would live in a society where we did not segregate those who were more profoundly affected by physical impairments and do not speak, so that all of us came into daily contact with those whose neurology was similar to our child’s as well as those with an array of impairments. Perhaps families with older kids who are farther along in the process would volunteer to reach out and be available to other families new to all of this. The point is that we could help each other more than is being currently done.
No family should feel they are alone, or feel the fear we felt or the terror and worry that dogged us every waking moment of those first years after my daughter’s diagnosis. Years we spent in a state of almost constant panic that we should be doing more, that if we didn’t we were losing time, that our daughter’s life depended on it and that anything less meant we were failing her.
No one, who is given a diagnosis of autism, should feel they are alone. None should feel less than or believe they are damaged or broken. No child should feel ostracized or that the way they process and view the world is “wrong” or “bad.” None should feel that because they are Autistic, they need to hide or feel abandoned by society. No one should be made to feel ashamed for the way they were born. No one. This is what I want to see change. This is why I keep writing. All of us can work together to create a world that embraces one another and encourages, rather than condemns. Each of us can play a small part in making this happen, by increasing our awareness, by accepting difference, by working together.
Autism “Experts”
Yesterday Emma asked Richard a question. It was a question she’d never asked before. It was a question that made us both inwardly gasp and later discuss at length. It was one of those things that was noteworthy and made us both rejoice. It was an example of progress, not just Emma’s, but as I’ll explain, our’s too. Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t. As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain. Emma ran into our bedroom and asked, “What happened Daddy?”
Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment. We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question. We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions. We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference. As though our daughter would otherwise stagnate without our constant tinkering. As though she would not make any “progress” without our various interventions. As though autism meant complete stagnation and no movement of any kind.
Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter. And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!
No one told us this seemingly obvious fact when Em was first diagnosed. No one told us this, probably because no one thought it necessary to. Except that in my case anyway, it was necessary. It was more than necessary. It was required. Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.” It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.
“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~ Lynn Koegel and Claire LaZebnik
It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.” It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea. I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post. It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying. Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting? The very people they say they are experts on? Don’t you find that odd?
Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting? Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things? Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws? Any of this sound vaguely familiar?
“What happened, Daddy?”
Em dressed as a pink poodle ~ 2007
Posted in Autism, diagnosis, Parenting
Tagged Autism, autism experts, autism spectrum, autistic, early intervention, Parenting, progress, therapy, treatments
A Recipe For Living a Good Life
Last night Richard and I had one of our conversations. It’s the conversation that starts with, “If only we’d known what we know now…” The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…” It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…” And then the other joins in with, “Literally. We would have literally done everything differently!”
One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now. How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic. How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror. How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…” “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!” “You should try…”
I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…
What I Wish I’d Been Made Aware Of When My Daughter Was Diagnosed With Autism
How Fear Drove Me To Pursue A Cure
We Are in This Together
A Fantasy For Parents of Newly Diagnosed Autistic Children
To The Person Who Googled “I Don’t Know if I Can Handle Autism”
What we were told about autism was WRONG. Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true. Having an Autistic child does not mean the entire family will be dragged down. No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family. Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.
We have been told all kinds of things about our daughter by non autistic people. Not one of their predictions has come true. NOT ONE! Read that again. Nothing we were told would happen, actually has! Think about that. Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now. But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact. If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally. We would have laughed and walked away.
We would not have hired the agency who provided us with round the clock therapists. We would not have shuttled Emma from one doctor to the next. We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass. We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology. All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much. The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.
So here’s the truth about my Autistic child:
She is a human being with desires, wants, needs, emotions and feelings, just like any other child. If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent. If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes; I will have led a good life.
Emma and Nic ~ 2003
Shame, Addiction & Autism
“We all have shame. We all have good and bad, dark and light, inside of us. But if we don’t come to terms with our shame, our struggles, we start believing that there’s something wrong with us – that we’re bad, flawed, not good enough – and even worse, we start acting on those beliefs. If we want to be fully engaged, to be connected, we have to be vulnerable. In order to be vulnerable, we need to develop resilience to shame.” ~ Daring Greatly by Brené Brown
I’ve written about shame before. A couple of commenters on my last post about shame told me to watch Brené Brown’s TED talks on vulnerability and shame, which I did. B. Brown also has several books, Daring Greatly, is the one I’m currently reading, where she writes, “A sense of worthiness inspires us to be vulnerable, share openly, and persevere. Shame keeps us small, resentful, and afraid.”
Shame is something I am intimate with. I don’t know many addicts who aren’t. I’ve written about addiction and specifically having an eating disorder ‘here‘, ‘here‘ and ‘here‘. The self-betrayal implicit in addictive behavior exacerbates the pre-existing shame, creating depression and self-loathing. Attempts to alleviate those feelings with addictive behavior only fuels them. Shame heaped upon more shame is not a recipe for happiness or success. Ignoring shame, trying to bury it, and trying harder to not feel it, doesn’t work either.
There have been a number of studies suggesting a link between addictive behavior and autism. I don’t find this surprising given how feelings of alienation, isolation and fractured self-worth all contribute to wanting to seek refuge and escape. Except the thing we are trying to escape from is often ourselves. Many of us have internalized our shame, particularly those of us who tend toward perfectionism. Add to this obsessive tendencies, a desire to be loved, wanting to fit in, believing we are “less than” and addiction can feel like a perfect fit and the only way we can survive in a hostile, unaccepting world.
Oddly, we, as a society, tend to attribute laziness and a lack of will power as the reason people eat too much, drink too much or spend more money than they make. Similarly, people seem to think autism is a choice or at least the behaviors associated with autism are. These people apparently believe Autistic people can “lose” their “autism” if they can just be trained to hide their “problem” behaviors or the things they do that make them obviously Autistic. Many Autistic people talk about being scolded and punished when they were unable to produce the results expected of them when told they needed to “try harder.” Trying harder will usually make the person feel more terrible about themselves.
I worry about a culture that is conditioned to believe we must ‘train’ our Autistic children to behave in ways that most cannot, or cannot without a massive cost to their self-esteem. I worry about “autism treatments” and “therapies” whose underlying message is that our children are not okay. I worry about what our children are internalizing. I worry about addiction, depression, suicidal ideation, and how those things get set in motion at a very young age from feeling we are “bad,” not worthy and less than. I worry that because many do not understand autism is a neurological wiring, or do not take into account the experience so many Autistic people are describing, we are raising fearful children, filled with shame for who they are as human beings. Instead of helping our children flourish, encouraging them to be all they can be, we are trying to make them into something they cannot be.
I love this photo of Emma because it captures her in all her Emma-ness!
Posted in Autism, Parenting, shame
Tagged addiction, Autism, autism therapies, autistic, Brené Brown, eating disorders, fear, Parenting, self esteem, shame, TED, vulnerability
Living Independently on the Autism Spectrum: by Lynne Soraya
Living Independently on the Autism Spectrum by Lynne Soraya is described as “What you need to know to move into a place of your own, succeed at work, start a relationship, stay safe.” In fact, it’s a great deal more. Lynne, who writes for Asperger’s Diary in Psychology Today and works for a Fortune 500 company, covers everything from proper conduct and attire at a job interview, what to do when stopped by the police, setting boundaries, career goals, work related issues and self advocacy. My copy is filled with highlighted sections and notations, such as this quote regarding boundaries:
“The unfortunate reality for many on the spectrum is that the training that we receive to help us to “blend in” to the wider world can have the difficult side effect of teaching us to ignore our own boundaries.
“We learn to tolerate pain and discomfort of situations beyond what many others experience in order to appear more “normal” or to “fit in.”
In the margin I scribbled – “encourage a sense of self, listen, honor and respect. Attempts to teach how to “fit in” ensures the opposite within one’s own self. Feelings of being a fraud.”
And this, in her chapter on safety:
“There are times when you will not want to make eye contact. For example, for men, making eye contact while in the bathroom or at the urinal may be completely misunderstood.”
I wrote in the margin, “Privilege = never having to think about things like this.” And, I would add, not only never thinking about something like this, but never having the thought occur to me to think about something like this. Many of the things Lynne writes about are not only things I’ve never had to think about, they are things that have never even occurred to me to think about.
Another sentence I highlighted regarding encounters with law enforcement:
“If you are concerned as to how your body language or speech patterns may be perceived by the officer or first responder, let her know that you have autism and/or provide an autism information card. Before you reach for the card, however, indicate to the officer either verbally or with gestures that you will be reaching into your pocket or wherever the card is located so that the officer will not think you are reaching for a weapon.”
And this about job interviews:
“However, the way many charities represent autism, mixed with our culture’s very simplistic understanding of what disability is all about, can be devastating to many of us who are seeking deeper inclusion in the world. The reality is that I, you, and everyone else on the spectrum need to help the world understand that having challenges – even extreme ones – does not mean a person does not have abilities and contributions to make to the world. Ability isn’t a binary thing. Unfortunately, many people who have limited experience with disabilities tend to act like it is, so when challenges are emphasized, lack of ability is assumed.”
Throughout this book I thought about my daughter. I thought about how, as she grows older, she may encounter, at least, some of these issues. I thought about how she put music to a slide show of photographs on her computer last night and was so excited because I came in to watch it with her and told her how impressed I was. I thought about how creative she is with language and how she comes up with ideas and ways of saying things that would never occur to me, I thought of her joy in music and how when she dances, she is without inhibitions or self-conscious thought. I thought about society and how so many would suggest we “train” her to conform, fit in, and how, many believe, it is all for her own good. And I thought about how I hope my daughter never feels she must betray herself to appease or please others.
Lynne’s thought-provoking and insightful book is available in paperback and on kindle at Amazon.
Person First Language
I wrote yesterday about an evolving fantasy of my ideal introduction to autism and what that might look like. Later I was asked privately about ‘person first’ language. An example of ‘person first’ language is: “My child has autism” or “She is a person with autism” as opposed to: “My daughter is Autistic.” This topic comes up repeatedly so I thought I’d tackle it with a post of its own. The current language used to describe autism and Autistic people, starting with the insistence among many parents, educational institutions and the medical establishment to use person-first language (read Jim Sinclair’s Why I Dislike ‘Person First’ Language), is all about deficits, comparing Autistic neurology (inferior) to non Autistic neurology (superior) which is self-serving, biased and continues to further the general public’s misperceptions about autism and Autistic people.
Shame based language, the things we say because we don’t know better, because we’ve heard or been told it’s how, whatever the topic is, should be spoken of, is still shame based language. For a long time I didn’t understand why person-first language was objectionable. It seemed “respectful” to speak of the person first before adding their neurology. Except that autism brings with it discrimination, prejudice, misunderstanding, assumptions about intelligence or a lack of, and so suddenly all those people who are being so careful to describe this person, whose neurology is “Autistic”, are actually implying that they think autism is something to be avoided, it’s something we pity, it’s something we’d like to be sure the person knows, we “understand” and are being careful to give them “respect” except we are doing exactly the opposite. When we have no particular issue with some aspect of a person, we do not make sure they understand we are aware they are part of the human race.
I will always respect anyone’s personal preference, but in general, I will continue to use “Autistic” because I am not ashamed of my daughter’s neurology and I refuse to convey that underlying message of ‘less than’ inherent in ‘person first’ language.
Autistic perspective on ‘person first’ language:
ASAN – Identity First Language
Shaping Clay – Person-First Language Doesn’t Put People First, It Makes Them Invisibly
Autistic Hoya – A Second Argument Against Person-First Language
Radical Neurodivergence Speaking: I don’t have autism. I am autistic.
Amy Sequenzia – I am Autistic
Posted in Autism, language, Parenting
Tagged Autism, autistic, Jim Sinclair, People-first language
A Radical Notion
As I fantasize about a world in which autism is not consider a “bad” thing, but instead is seen as yet another type of neurology with its pluses and minuses, I continue to rewrite the “ideal introduction to autism” with the hope that one day this may actually be a parent’s experience. I can’t imagine what that would be like, but I know for a fact, it would be a hell of a lot better than the very real, very upsetting, confusing and painful introduction to autism that I was given almost ten years ago.
First off, the literature regarding autism… more and more there are books and blogs (!) written by Autistic people introducing the idea of autism as another kind of neurology with both innate challenges and wonders. I’ve listed many of them on the Resources page on this blog. As there were no blogs (written by Autistic people) that I knew of in the fall of 2004 I went to Barnes & Noble and bought pretty much every single book written on Autism. Some would say that was my first mistake, as I was greeted with nothing but gloom and doom. Other than Donna Williams and Temple Grandin, all the books were written by non autistic people about the dire, horrors of autism and what that meant for your child. (And none of it was good.) Autism was most definitely not something to celebrate.
The idea that autism could be seen as anything but terrible was not even a radical notion, it was a thought that hadn’t made it into the public sphere. When Emma was diagnosed the big names associated with autism were Andrew Wakefield, Jenny McCarthy and Bernard Rimland. It was impossible to read anything about autism without those three names coming up. Parents new to all of this, fumbled around trying to make sense of the various thoughts about cause, was it really an epidemic and how to best serve our children who were said to have been snatched from our protective arms. I’ve written about the depth of my fear during those first few months that turned quickly into years in numerous posts on this blog.
My fantasy is nothing short of radical, but perhaps one day it will not be seen as such, but instead, will be commonplace. My fantasy introduction to autism begins with the evaluation. At least one of the therapists who came to our home in September of 2004 would have been Autistic. Once it was thought my daughter might occupy a place on the Autism spectrum, more Autistic therapists, social workers and psychologists would have come to conduct the evaluation and talk to us. This, then, would have been our introduction to autism… meeting actual Autistic people, who are able to articulate what the challenges are and what the joys are! People who could offer a balanced view of a neurology that I would be able to identify with and see there was overlap with my own. People who would gently encourage me to review my own neurology and see that my daughter’s experience and processing of the world, while different from mine, has many similarities. People who could help me so that I was in a better position to be the mother my daughter needed me to be.
After the evaluation and diagnosis had been made, we would then be given support in finding at least a few Autistic people who were in the profession of working with families with Autistic children. In my fantasy, Autistic people would be among those creating schools, designing curriculums, teaching academics, conducting seminars for us, the parents of Autistic children, to attend so that we might better help our kids. It seems to me a radical shift in all aspects of autism, what is said about what it is to be Autistic and what is being told to those who are non autistic, needs to occur. My dream team would include Autistic and non autistic alike, but it would be a blend of those who presume my child competent, who treat my child with respect, who are interested in my child’s well being and want to work towards her strengths, encouraging her to be all she can be and cheering her on. 
Posted in Autism, Autistic Role Models, Parenting
Tagged Autism, autism diagnosis, autism spectrum, diagnosis, evaluation, Parenting, presume competence, support services
Trauma & Autism
Studies confirm that people who are Autistic often respond to stimuli more intensely than those who are not. Hypo and hyper sensitivities are often discussed when it comes to vision, taste, hearing, smell and touch in Autistic people. Often there is a mixture of both hyper and hypo sensitivities in any one person. (I use these terms because we have a lack of good words to describe these things. Both hyper and hypo sensitivities are subjective and are used in comparison to non autistic people, which is problematic in and of itself, but for the sake of this post, it is the best language I have.) What happens to a person who experiences the world more intensely than the majority of people, particularly when confronted with frightening situations, anger, loud noises, etc?
“Recent studies have confirmed that children with autism have very active Amygdalas; the center of the brain that stores traumatic events.” ~ Traumatizing Events and Autism
When Emma was just two, we went to visit my mother, the proud owner of an adorable German Shepherd puppy. Emma had no fear of dogs, but during that visit, the puppy playfully chased Emma, nipping at her ankles and Emma began to scream in terror. By the time I was able to rescue her, hoisting her up in the air and away from the puppy’s sharp little teeth, the damage had been done. To this day, Emma is frightened of dogs and upon seeing one that gets too close, she will cry, “Mommy pick me up!” Despite the fact that Emma is now much older, the trauma is real and intensely felt. For years I couldn’t understand how something so (seemingly) benign could cause her such incredible, and to me anyway, over-the-top terror. I continued to believe this was a fear she would “outgrow” and that it was only a matter of time before she did so. But so far, her fear, while not as extreme as it once was, is very much intact.
I am on a family picnic. My parents pull out a french baguette, an imported pâté, a coveted gift from my father’s sister who lives in Paris, and some Swiss chocolate. I am hungry and excited as pâté and chocolate are two of my favorite things to eat. On the way home I begin to feel sick. By the time we return home, I am vomiting and have the flu, but associate the feeling of nausea with the pâté. It is almost two decades before I can stand the smell of pâté, let alone taste it without gagging.
These are both relatively benign examples of sensory issues intersecting with memory and causing longer term associations, but what about intense trauma such as physical and emotional traumas? What about the time when the ABA therapist locked Emma, who was only three years old, in her room for 30 minutes, instructing me to stay out or he would pull all our services, while she screamed and begged to be let out? I know how traumatized I was and continue to be because of those 30 minutes, what about Emma’s experience? Did this cause untold damage? Did Emma experience the degree of trauma that I did? Is her experience even more profound? What about how she experienced her own mother not saving her from such a person? How has she integrated these events into her life experience? Is it felt as the ultimate betrayal? How will it manifest in the future?
These are the things I think about. Not because I am intent on beating myself up, but because these are things that happened and I don’t think any of us are served by NOT talking about them. These are the kinds of dilemmas many parents have experienced. These are the questions so many of us have. Questions that are, as yet, unanswered. We have to ask ourselves when we are considering a methodology and those who will come into contact with our children, are they going to be respectful and kind? Does this methodology presume competence, is it respectful of my child? Will the person be patient? Will they treat our children as inferior because they see autism as an inferior neurology and one that needs to be “trained” away?
“What does trauma do to the brain?
“Severe or repeated trauma can re-route emergency systems that are meant to be used only occasionally, and leaves them active, like a switch stuck in the “on” position. This can shrink or damage the part of the brain that thinks and plans, and potentially damages the brain’s ability to feel love and safety in the presence of others.
“To deal with this pain and stress, the individual may become more rigid and inflexible in his or her thinking and develop tunnel vision and selective listening. Over time to compensate for the damage done to the short term memory and ability to sequence by continued exposure to our fight or flight response, or allostasis, the individual may develop rituals, become rigid and controlling or “oppositional”, shut down, withdraw, rage, retreat into a special place, or become over-involved in things that help the individual to escape.” ~ Autism and Trauma: Calming Anxious Brains
It is tragic that the very methods a traumatized Autistic person may use to calm themselves from the trauma they’ve experienced, are often the very things those who are not Autistic pinpoint as “behaviors” or actions that must be stopped. Not only is the person trying as best they can to deal with the initial traumatic event(s), but they are often being punished and told to stop using the only ways they know of that actually help them cope, thus creating further trauma.
“Traumatic events often occur during developmentally vulnerable stages in the individual’s life, and in this process become intertwined with the child’s bio- psychosocial development. How easy it would be to dismiss this in a child with an ASD, who by definition is struggling with development of a sense of self, and is uncomfortable in an alien world, even prior to repeated exposure to trauma.” ~ Commentary: Complex Post-Traumatic Stress Disorder. Implications for Individuals with Autism Spectrum Disorders—Part II
Trauma, in relation to autism, is something I wish I’d heard about during those first few years so that I might have made better and different choices for my daughter. Those I know who are Autistic talk about their trauma often, yet there is very little written about trauma in relation to autism in the general conversations currently going on. This must change.
An Interview With Tracy Thresher of Wretches and Jabberers
Wretches and Jabberers, the not-to-be-missed documentary by Oscar Award winning and two-time Academy award-nominated filmmaker Gerardine Wurtzburg, follows two non-speaking Autistic men, Tracy Thresher and Larry Bissonnette as they travel the world, reaching out to other non-speaking Autistic people in an attempt to change public perceptions surrounding intelligence and autism.
I’ve written about the film ‘here‘, ‘here‘ and ‘here‘ and about meeting Tracy and Larry, ‘here‘, ‘here‘ and ‘here‘. I cannot emphasize enough how mind altering this documentary is. It is imperative people begin to examine their own ideas about what intelligence is and what that means, particularly as parents of children who may be similar to Larry and Tracy, who appear profoundly disabled or have difficulties with verbal communication. Tracy and Larry exemplify all that is thought to be “other” and yet, when they type, they are eloquent, often hilarious, articulate and philosophical, as well as insightful about society’s view of them. After watching Wretches and Jabberers, one cannot help but conclude we are all more alike than not. The divisions we perceive are shown as constructs of our own making. The biases we have towards those with disabilities is something we all must actively change.
A few months ago Tracy Thresher generously agreed to answer a few of my questions. What follows is our conversation, but as you read this, please think about questions you may have and leave them for me in the comments section or email me privately with them at: emmashopeblog@gmail.com. (Do tell me whether you prefer to remain anonymous as I will credit you with any questions I end up using, unless you prefer I do not.) I intend to submit this interview, once it’s finished, to Huffington Post and hope it might inspire people to reconsider their assumptions.
AZ: Tracy, how would you describe the documentary, Wretches and Jabberers?
TT: Our film catapulted me to realize my dream of traveling the world to educate, learn and change old attitudes of discrimination toward people of varying abilities. The Larry and Tracy duo illustrates how intelligence is often worked out in a much different way. Our journey takes us to places of enlightenment and our humanity, humor and intelligence comes shining through our typing. Our mission to spread the reality of our amazing intelligence through our typing is our way of promoting the Presumption of Competence dispelling myths. Our story is one that is a road trip for two friends who are in Larry’s words “more like you than not”.
AZ: “More like you than not” is such a wonderful description. So much of the literature surrounding autism is about the “deficits” of Autistic neurology compared to non Autistic neurology. Can you talk about the assets and the similarities?
TT: In my way of thinking, my experience initially was uncontrollable anger for the life I had trying to break through the misunderstanding in school. Kids can be brutally honest, reflecting the language that was the accepted norm in my childhood. Labeling kids is crippling. MR (mental retardation) on a diagnostic chart equates to NOT a candidate for the honor roll. Now I am able to communicate the reality of autism. I met Monk Hogen during the filming of “Wretches and Jabberers”, shining his wisdom on my autism. My true desire and purpose in life is breaking the walls of injustice down and my autism is the gift God gave me. I now focus on how I am connecting with all kinds of people through my work on the road. The high I feel in my own community is so wonderful, knowing that people want to know me. The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.
The anger on stage during my presentation in Japan was related to the lost opportunities in my education. I kept shouting out my automatics like “Look at me now! The kid you told one another to keep in isolation now is mentoring students which is healing salve to old wounds of injustice.” The other anger in Sri Lanka is more about the heat in the way it took my overly heated mix of perspiration soaking my clothing to extreme discomfort. Also, the popular foods in their culture are not in my comfort zone. Finland washed my anger, turning my heart to love of the climate. The cuisine helped too. Primarily, beautiful lands of countryside put my spirit at ease. Henna melted years of lost hope by crumbling away the feelings of isolating my heart to love.
People in the world often fear the paradox that autism usually presents. Larry and I mostly felt gracious vibes in our travels but the camera crew likely alters reality. To reflect on the cultural attitudes, the typing of my international friends is the true compass pointing to injustice.
AZ: For children who may be trying to cope with similar frustrations and anger, what do you suggest to them and their parents, teachers and therapists?
TT: This is my mission to show kids and their supports that putting communication to the top of their list of priorities is vitally cleansing to the mind. Releasing deep thoughts is the key to alleviating anxiety. Frustration leads the body to unproductive anger. Being able to show intelligent thought is the path to happier futures and true quality of life, leading to purpose. That is what I sought and found with typing.
AZ: Was there anything others might have done to help you when you were overwhelmed with anger?
Harvey and I have trust in our partnership. I need his firm yet kind support to stay on course with managing my autism. Harvey and I work well together. Typing is my outlet and open communication is the key. Long term shared goals helps to keep me on track. Harvey’s commitment to my communication is the big time dosing of calm energy that I need. The commitment to presuming competence is the major breeze of refreshing air to cooling anger.
AZ: You communicate by typing, but need someone to support your typing. Why is it necessary for you to have someone supporting you?
TT: Impulse to type out my most irritating automatics like going to radio stations or wcax news gets looping in my mind. Having good facilitators is helping me to slow my typing to think and connect to my inner thoughts. I also need high goal of working on fading physical support to be more independent and type with lessening support. Building trust is critical to fading.
Walk Toward the Light
First there was the evaluation. The therapists, the psychologist, the questions. Everyone arrived with their little bag of toys that remained untouched by session’s end. Some tried to interact, others just observed, but all, eventually, turned to us to ask pointed questions. Questions meant to gather information, but that felt like tiny daggers, cloaked in kindness, laced with concern. They jotted down things we could not see, little bits of information they would, no doubt, refer to later, once back in the safety of their office.
Meanwhile we were in the midst of it, with our child who behaved in ways we couldn’t anticipate and often did not understand. None helped us with that. Their reports finished, their conclusions made, their notes and jottings summarized into a single word – autism. Delivered to us by phone, we were told, like a psychic delivering a premonition, the cold, hard “truth”. Our daughter’s life, suddenly bled of joy, like so many leeches placed on a feverish body, draining her of all vibrancy. Her bright future no longer bright, she was categorized. Her deficits itemized and highlighted, her strengths dismissed or ignored, the solution, the remedy, the therapeutic interventions, the “behavior modification” programs could now begin. If we were lucky she could be trained. She could be “modified”. She was young, we were reassured. There was still time. We were congratulated for having caught “it” so early. Early intervention was key, we were told. Intervention…
That was the beginning. That was the beginning. Instead of reassurances, we were given dire statistics, useless advice, asides about inner strength, courage, even “god” was evoked with alarming frequency. People learned of our news. Carried along on the same wave of terror, they tried their best to conceal what they really thought. Some were more successful than others. Some, couldn’t help themselves, in an ill-conceived attempt to prop up, they said things like, “I don’t think I’m strong enough to have such a child…” or “I wouldn’t be able to handle it if…” or simply “How do you do it?” and with each, the darkness crept closer, enveloping us in arms of sadness and pity. The darkness became familiar, soon, without realizing it, I had embraced it and found others who felt similarly.
What I would have given to have had my Autistic friends there with me during that period when everything was so scary and the unknown loomed before us like a dark impenetrable wall. What I would have given, for someone to say, “You are frightened now, but they do not know, they do not understand, they may mean well, but they cannot help you. You see, they are coming at all of this from the perspective of their own limited neurology. They cannot see beyond what they believe to be true. But there is another “truth” and it is one they are unable to tell. The words they use will only lead you down a path you must reject. It is a path that will descend into more fear, more terror. It will not lead you and your child to anywhere you want to go. Come with me, instead. Walk with me. Walk toward the light.
In my ever evolving fantasy of – What if? – I imagine all my friends… my friends who are Autistic, some of whom do not speak, some who do, some have similar interests as my daughter, others do not, but all… all share her neurology… and it is towards them that I walk. It is with them that I surround myself. It is with them that I choose to be among, because they know. They know what it is to be Autistic. They put beauty in the word “autism”. It is their faces, their words that I think of when I think about autism and my fear is vanquished. Fear, now replaced with pride and hope and joy that my daughter is part of such a caring, loving group of people; I am relieved. A community who has come together to care for each other in a world that continues to ostracize, segregate and criticize, this is the community that stands with their arms open wide, in acceptance, in celebration of all that my daughter is and will become.
Walk with me… walk toward the light…
Posted in Autism, Autism Acceptance, Parenting
Tagged Autism, autism diagnosis, autistic, behavior modification, deficits, diagnosis, early intervention
Muddying the Water: Alleviating Pain ≠ “Recovery”
A few months ago I wrote about how, once we were given an autism diagnosis for our daughter, so many of the things we believed were uniquely and wonderfully “Emma”, were suddenly thought to be examples of her “autism”. Things were either categorized as a deficit or a “splinter skill”. Splinter Skills and Other Words We Use concentrated on talents, interests and abilities. My friend, Chavisory reminded me yesterday of the physical issues often mistakenly believed to be part of autism. Things like allergies, insomnia, GI problems, epilepsy and food and eating challenges that often people who are Autistic have, but that many in the general population also experience.
Chavisory mentioned in her comment, a NYTimes article about a drug trial thought to minimize social withdrawal in Autistic people and those with Fragile X. She wrote, “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” Chavisory’s point is an important one. This distinction is critical. Not only because researchers are often trying to treat something that is actually something else, but because it confuses caregivers into believing they can “cure their child of autism”.
When a non autistic person has food allergies or insomnia, we say they have food allergies or insomnia. When an Autistic person has a food allergy or insomnia, many believe it to be yet another aspect of their autism. People talk about “co-morbid” diagnoses of an Autistic person as though it were all folded into the autism diagnosis. The problem with all of this is, it muddies the waters and makes people misunderstand what autism is and isn’t. And it opens the door for many to believe they are curing their child of autism. Taking care of allergies, GI issues and insomnia will not make an Autistic person non Autistic, however it will make them feel a lot better.
When an Autistic person with food allergies or debilitating insomnia, who also has hyper sensitivities to texture, taste, smell and sound, is given melatonin to help them sleep or a diet that complements their specific constitution, it stands to reason they will exhibit behavior that reflects that. When anyone, who is in extreme pain and exhausted is helped to have that pain and exhaustion alleviated, they will feel better. They will be able to smile perhaps, focus, be more alert, even engage in conversation, with an ease they would not exhibit when overwhelmed with pain and exhaustion. But when this person happens to be Autistic, people use language suggesting their “autism” has been reduced; words like “recovery” and “cure” creep into the conversation.
Suddenly people become convinced that every Autistic person has food allergies, GI issues and sleep disorders and therefore ALL should do x, y or z. If that doesn’t work, instead of questioning the underlying issue (that perhaps this person does not have an allergy or insomnia) many will up the ante by doing more radical “treatments” to treat an allergy or condition that the person actually does NOT have. Logic falls away. Common sense is rejected. The pursuit of a perceived “problem” that may have never existed is discounted as not the problem. The answer is to pour more money into finding the thing that will remove the “autism” even though autism is not what is causing the pain and discomfort. Special doctors and “autism specialists” are brought in to advise and treat.
When we start throwing all kinds of things at an “autism” diagnosis, when a massive array of physical and emotional things get added, when temperament, interests, preferences, talents become embedded in the “autism” diagnosis we are causing far more confusion and problems to an already confusing diagnosis. And people misunderstand and say they’ve “recovered” their child or their child has been “cured” instead of recognizing that what’s really happened is they found something that helped their Autistic child, who had allergies or insomnia feel better. Meanwhile thousands more, who pursue similar ‘treatments’ with no benefit to their child, conclude they need to find a better doctor, or treatment, or diet instead of acknowledging their child doesn’t have an allergy.
Em listening to an opera rehearsal over the weekend
Posted in Alternative Therapies, Autism, Parenting, sensory issues
Tagged Autism, Autism Cures, autistic, Cure, Food allergy, GI issues, Health, hyper sensitive, hypo sensitive, insomnia, pain, recovery, sensory issues
From Cure to Celebration
Yesterday Richard wrote a wonderful post on his blog entitled ~ Happy Father’s Day. In it he talks about being a father and how having children has changed him and his life. He ends the post with, “To all our children, thanks for making our lives matter!” I love that. That’s it, right there. That’s the feeling I’ve had, but couldn’t find the words to so beautifully or succinctly express.
Richard also wrote, “…We got a beautiful boy, Nic. Eighteen months later, we got a beautiful girl, Emma. One of each, as they say. We got “one of each” in another way, too. One autistic, one not.” I read that and smiled, because it’s so true. We have been fortunate enough to have a child of each sex AND of two different neurologies! Three years ago I would not have been able to write any of this, I was still in the – Autism is tragic – mindset. But happily all of that has changed. Some people object to those of us who have chosen to celebrate our child’s neurology. They say we are sugar-coating what is real and difficult and makes it seem less serious than it is. I disagree with that thinking. I think we can still acknowledge the massive challenges our Autistic children face in this world, while still celebrating who they are and the beauty of their specific way of thinking and being.
I do not, for a second, believe that my daughter has an easy time or that she will not face all kinds of things a non Autistic peer would not have to deal with, but I do not need to increase her challenges by not accepting her, believing in her and celebrating her, exactly as she is, now, in this moment. Adding my expectations, despair and ongoing critique and comparison of her, to the very real issues she must cope with on a daily basis does not make her life easier. And I really want to make her life easier, not harder. I’d like to be the person who champions her, makes the bumps she will inevitably face a bit less bumpy and help her navigate some of the twists and turns of life, by giving her acceptance and unconditional love for every aspect of her being.
I keep thinking about all our children who have trouble speaking, how when they are able to communicate in some way, either through typing or speaking, we non autistics are far more likely to listen and assume intelligence than not. I keep wondering what would happen if all our time, money and energy were spent on finding ways to help our children communicate through typing and other AAC devises, instead of on cures; would we see a shift in society’s perception regarding autism? Or would all those people dismiss their words because they are written and not spoken? Amy Sequenzia writes about this ‘here‘.
You see, we were one of those families who pursued the bio-med route. For years I tried all kinds of things, thinking we could cure. As long as I believed in a cure, everything else took a backseat. What I didn’t realize was that accepting and celebrating my child, fully and without amendment was the answer I had been looking for in all those doctors and specialists who claimed cure remedies. The remedy wasn’t a cure, the remedy was celebrating the child I have, exactly as she is – that’s the remedy.
Posted in Autism, Autism Acceptance, Parenting
Tagged acceptance, Amy Sequenzia, Autism, Autism Cures, biomed, non-speaking, Parenting, Richard Long, The Book of Paul
But What About Alex?
Another Autistic child has died… stabbed… multiple times, in the chest, by his mother. Alex Spourdalakis was 14 years old.
“The mother of a 14-year-old with severe autism who was found stabbed to death…” ~ Daily Herald.com
But what about Alex?
”The mother of a 14-year-old with severe autism…” ~ Pantagraph.com
But what about Alex?
“First degree murder charges have been filed against Dorothy Spourdalakis, the mother of a teen with severe autism…” ~ abclocal.go.com
But what about Alex?
A young man. Stabbed. Not once. Multiple times.
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of happiness.” The United States Declaration of Independence – 1776
But what about Alex?
In the 237 years since those words were first written we have failed miserably at putting this idea into practice. All human life is not treated as equal; apparently it is not “self-evident”. We continue to live in a world where equality is still desperately sought by a great many.
For those who are born unable to speak and Autistic, those among us, who are given the label “severe”, their lives matter even less. We not only think of ourselves, (those of us who are able to speak and whose neurology is not Autistic) as superior, our lives deemed more worthwhile, but we are reminded of our superiority every single day of our existence, just as those who are born unlike us are told in myriad ways how they are not.
Autistic people, particularly those with multiple physical challenges, are spoken of as “burdens” to society, they are talked about as though none who are Autistic are capable of understanding the words being used to describe them. They are not consulted. They are not listened to. For the most part they are being ignored. And those who are raising their voices in protest, who dare to speak out against the crimes committed against them, they are met with resistance, anger, indignation. They are often ridiculed, dismissed, silenced or simply ignored.
When a parent murders their child, we cringe in horror. When that child is disabled we sympathize. The media brings in psychologists to help us understand. We dissect the child’s history, we look for clues, what could have provoked a parent to do such a thing? Sometimes we conclude the parent was crazy and unfit, but not before we make sure there was nothing unusual about the child. As we rally around, trying to distance or identify with the parent, Alex and those like him are all but forgotten. His life is seen as an example of what some must endure. His life becomes an illustration of that burden on society that everyone wishes would just go away.
But what about Alex?
What about what Alex had to endure? What about what it must have been like to live his life for those 14 years? Where are the news articles discussing who this young man was? What did he love? What were his passions? What made him happy? What must it be like to not be able to speak? Did he communicate through typing? Did he read and write and if so what did he like to read? What was his favorite subject? Did he love music? Did he like animals? Was there something special he enjoyed doing?
What about Alex?
Posted in Autism, functioning labels, Parenting
Tagged Alex Spourdalakis, Autism, Equal Rights, equality, first degree murder, human rights, liberty and the pursuit of happiness, life liberty and the pursuit of happiness, murder, non-speaking, Nonverbal communication, physical challenges, pursuit of happiness, Stabbing, united states declaration of independence
Emma's Hope Book 