Wednesday, February 27, 2013

Remembering Autistic Victims of Domestic Violence

Vigil for George Hodgins, Sunnyvale, CA
Photo © Steve Silberman
The Autistic Self-Advocacy Network, Not Dead Yet, and the National Council on Independent Living have set aside this Friday, March 1, to remember the lives of people with disabilities who lost those lives at the hands of their family members or caregivers. We understand that this is difficult statement to comprehend and that many people's first reaction may be to assume that such events are extremely rare. Unfortunately, such domestic violence is not unusual at all, even its most extreme form, the killing of a disabled people at the hands of their caregivers.

In its latest statistics from 1999, the FBI reported that children under the age of five in the United States are more likely to be killed by their parents than by anyone else; parents were responsible for 57 percent of these murders. But while the murder of a "normal" child is almost always seen as horrific -- recall the trial of Casey Anthony for the murder of her daughter, Caylee -- the murder of a disabled child or adult does not get reported in the same manner.

Almost one year ago, on March 6, 2012, George Hodgins, a 22-year old autistic adult in Sunnyvale, California, was murdered by his mother, who then killed herself. In the aftermath of his death, very little was written in the press about George -- the victim of the murder -- his life to that date or the life he did not get to lead. Most of the media's attention was focused on expressing understanding for George's killer. Because this simply would not have occurred had George's not been a "disabled life," members of the local autistic community organized a candlelit vigil for George and all other disabled people killed by family members.

On Friday, local vigils will be held in at least 15 cities across the United States. We urge you to attend a vigil if possible; our goal is to ensure that the tragic ending of a disabled person’s life is treated in no lesser a manner than the murder of anyone else.

A list of the major gatherings can be found here.

Monday, February 25, 2013

The Costs of Fearing Autism

Ariane Zurcher
emmashopebook.com

Ren gets the tdap vaccine (2012)
The Tdap vaccine protects against
Tetanus, Diphtheria, & Pertussis. 
Photo © 2012 Rene Najera
I recently spoke with my brother by phone. He was unable to travel. His voice was so raspy, his breathing slow and labored, had I not known it was my brother I was speaking to, I would not have been able to guess from the sound of his voice. He wasn't able to complete a sentence without pausing to take a breath. It was clear listening to him that the act of talking was incredibly difficult and painful. When we said good bye to each other I was overcome with emotion.

My brother was very slowly recovering from pertussis, more familiarly known as whooping cough. Because so many parents have chosen not to vaccinate their children for fear that vaccinations cause autism, whooping cough is on the rise. I'm including some links: here and here for those of you who may not be aware of just how serious and deadly whooping cough is, not just to our children, but to teenagers and adults too.

This is the other side of not vaccinating, the side so many do not consider. People of all ages are getting sick and even dying of diseases most of us assumed had been eradicated long ago. Whooping cough, unheard of for so long, is now on the rise. In my brother's case, his coughing was so extreme he would vomit, was unable to breathe, and speaking became impossible. Fortunately he slowly got better, but whooping cough can take more than three months to recover from, for those lucky enough to recover at all.

My children are vaccinated. I am vaccinated. I have had moments in the past when I wondered if there was a connection between vaccines and autism. I never believed vaccines caused autism, but I did wonder if it exacerbated pre-existing conditions.

I no longer wonder because I stopped fearing autism, stopped listening to those who would have us fear it, stopped fearing those who are Autistic. And it seems this is what it comes down to: When we fear 'autism' so much that we are willing to put our child's life at risk because of those fears, we must, as a society, look at what we are saying and believing. Organizations intent on fueling those fears for monetary gain are being dishonest with themselves when they refuse to see that adults, teenagers, children and babies are dying from preventable diseases because of people's fears regarding autism causation and vaccinations.

When a parent makes the decision to not vaccinate their child they are not just putting their own child at risk for developing life-threatening diseases, they are putting all of our lives at risk. It's important that we are clear about this. None of us lives in a bubble no matter how careful we might believe ourselves to be. The decisions we make affect more than just ourselves and our families. The decisions we make affect everyone we come into contact with.



A version of this essay was previously published at emmashopebook.com.

Friday, February 22, 2013

Bickering (Autism) Siblings and Broken Hearts

Shannon Des Roches Rosa 
www.squidalicious.com

We don't ever leave our youngest daughter Mali alone with her twelve-year-old brother. Leo's autism may affect how he speaks and communicates, but he remembers very clearly that until he was four years old, there was no little sister and he was Mommy's baby, and he has no problem expressing his antipathy towards his smallest sibling. Understandably, Mali is not a Leo fan. As for me, I worry that these two children I love so fiercely might hate each other. And that breaks my heart.

I try to help Mali see the things I love about her brother -- his sweetness, his impishness, his pitch-perfect singing -- while also trying to cultivate her empathy for the challenges that come with his kind of autism. It's not easy; she's got a spitfire, conclusion-craving personality; she needs things explained and decided on the spot. Plus, she's eight. She ends up coping through declarations: "Leo doesn't have to do clean up because of his autism, it's not fair," "Leo gets to have the iPad all the time because of his autism, it's not fair," or -- if he acts out at her -- "I hate you Leo; go AWAY!" Cue heartbreak, second round.

Her first two accusations are not actually autism-related, and make for easier discussion -- Leo does a great job cleaning up after himself, plus he's not a Mali-style tornado of arts, crafts, & stuffed animals, so it only appears that he doesn't have a big chore load like hers. And the iPad? It's Leo's. She can ask to borrow it; otherwise, it's his and that is that. But telling her brother she hates him and to go away? Uncool, especially because he can't help being different from her in the ways his autism expresses itself. She is welcome to tell Leo that he can't push her, she can yell it in his face if she wants to. But she may not insult him by telling him she hates him, at home or in public.

Rational explanations only help if Mali is calm enough to listen to them. When she's mad because her brother is unpredictable and is irritated by her very presence and does things differently and she can't even talk to him about it because he doesn't have conversations, we get lots of "I want Leo to not have autism!" alternating with "I want Leo to go AWAY." Then we have sit-downs about how he doesn't have any problems with his hearing, so while she can be mad about what he does, it is not OK for her to make him feel bad about who he is -- and why retaliatory meanness makes Leo think that being mean is acceptable.

Mali's strained relationship with Leo is complicated by his lovely relationship with their big sister. Iz is fourteen, only 21 months older than Leo, and has always been part of his reality. Leo loves his big sister, and she both protects and encourages him. When Leo gets upset, she coos and soothes him and tells him how wonderful he is, asks him what he wants and gets it for him, tells him everything is going to be OK. Mali doesn't get any of that love from Leo, or from Iz. It hurts. I can't blame Mali for being resentful.

But even Iz can't help the occasional gripe about our how our family life is sometimes molded by Leo's needs --  travel and outings are best when they're Leo-friendly, we tend to socialize at home or in wide open spaces like beaches so Leo doesn't get overwhelmed by the loud or the unfamiliar, and much of the time my explanation for telling her "No" is "I'm too tired" -- which must of course be Leo's fault as I must have to do a lot of extra things for him because of his autism (as opposed to the reality of being exhausted by all three of my delightfully exhausting children). And Iz will list all the extras she thinks are Leo-specific, if she's in a really not-great mood. She's not always wrong, but she also doesn't always want to hear that I rearrange my life for her, too, when that's what she needs.

When nothing else works, I tell the girls that brothers are stinky in general, and that autism has nothing to do with it. I know, I grew up as the only girl in a family with four children. I get along with my brothers now, but the two older boys loved making me and my little brother cower with fear -- when they weren't telling me they wanted to trade me for a goat, sitting on my chest and spitting in my mouth, or dropping worms in my underwear. Or wrestling me for the Atari 2600 joystick. Or, occasionally, hanging out happily making stop-motion animated movies with original Kenner Star Wars figurines, or memorizing lines from Stir Crazy and Caddyshack -- two of the six films we had on VHS. There were broken arms (accident), there were BB gun pellets in buttocks (not an accident). My brothers made my life hell. And yes, I am talking about those three uncles my girls love so much.

It's hard for them sometimes, though, especially Mali. Last night Leo scared her badly. He was in a bad mood because he is on break from school for President's Week, is irritable and dysregulated, and she's an easy target. He lunged at her when she walked by him in the bathroom -- which shocked her usually tough, fierce little soul into tears, as the bathroom has always been a safe space. My husband ran upstairs to hang with Leo while Iz and I took Mali into the girls' bedroom for hugs, cuddles, reassurances, and -- most importantly -- listening. I told Mali things would get better as she gets bigger and more Leo's size, and teased her that eventually Iz and Leo would move away to college or other school, and then she wouldn't have to worry about any siblings. That only made her cry harder -- she said that she loves Iz, she loves us all, Iz is never allowed to go to college, we're never allowed to leave, and we all have to live together forever. And that includes Leo.


A version of this essay was published at Blogher.com.

Wednesday, February 20, 2013

Labels, Light, and Love

J. Lorraine Martin
cheeselesspizza.blogspot.com

“Your son has pervasive developmental disorder, not otherwise specified.” That’s a mouthful to say, let alone hear.

It was explained as a type of autism. That was 16 years ago. I did not have the Internet at home.  There was no Google for further research. Dustin Hoffman had provided my only experience of autism in the movie, Rainman.

Looking back, the declaration--the actual diagnosing words from a stranger, a neurologist, is fuzzy. What did those letters, PDD-NOS, mean? Could a socially constructed diagnosis tell me who my son would become?

When I got home from that appointment, teary-eyed and uncertain, I looked at my son with his large brown eyes, head of blondish-brown ringlets, and cherub face. We had already begun to find our rhythm together. 

In our first year together, I intuitively discovered that if I laid him on the floor, and placed my head several inches over his, he would run his delicate, tiny hands through my long hair, looking up at me, calm and connected, as if in a cocooning tent of safety. I found that if we rocked in the rocking chair in his room in complete darkness, while I sang songs, or softly talked about everything we did that day, he was calm, and rested contentedly against my chest. Sometimes, my heart ached as I yearned to hear him coo or respond back in some more demonstrative way, but he didn’t at that time.  

When my husband and I returned from that neurologist visit, my son handed me a skillet. His limited vocabulary couldn’t form the words to express his desires, but his gesture told me all I needed to know. He happily ran around the house as I whipped up an egg for him.  Looking at my sweet, innocent son doing his best to communicate with me, I knew, despite my fears of the unknown, we would continue to find our way.

Due to his unique sensory system, he explored the world in ways foreign to me. To merely throw rocks in a creek wasn’t enough for him; we often found him wading waist-high, and on a few occasions--and to my great alarm--wading neck-high. He needed to feel it, water wrapping around him, holding him secure.  The neighborhood pool? Being fully dressed was not an obstacle to jumping right in. An ocean swim, in 30-degree weather? We’d watch from the shoreline in winter coats as he happily swam. Puddles?  They were his personal pools, as he laid fully clothed in them. On rainy days he begged to play outside.  Muddy exploration in the rain?  Even better! Bushes? I found him lying on our hedge once, as if to merely see it was not enough to fully comprehend it. A swing set? As much as he loved to swing, climbing across the top beam was far more compelling. Other mothers often called to me or flinched in fear as he climbed. “He’s fine,” I’d say. “He’s a great climber!” And when sunlight came streaming in through the windows? He squinted his eyes and directly stared, lingering in the light. 

My autistic son’s unique passions and sensory system have enhanced my own life experiences: I’ve swum oceans in the rain with my family; I’ve driven in a convertible with the top down during a storm, as my son and I laughed together in the thrill; We’ve sung at the top of our lungs stopped in traffic in that same open-topped convertible oblivious to anything but the joy of connection through song; I’ve chased him through a park as we giggled on a carefree day ignoring the idea that moms don’t usually chase 17 year-olds around in such a way; We’ve taken bike rides together on freezing nights because he loved it; We've ridden elevators and chased each other on spiral staircases in large buildings simply for the joy of it; We’ve parked under highway tunnels and played around with our echoing voices; We’ve chased geese by tranquil lake trails, and found the hidden path by the library to hear the song of birds, then put up a backyard birdhouse to further his passion; We’ve stood by fast moving trains to feel the exhilarating embrace of power as it swept by us.  

Our experiences led us to build relationships with others that transformed not only him but also me. Kind and truly open-minded people that affirmed the goodness of life in countless ways; I consider a small group of professionals as transformational in my son's progress. Whether cultivating his unique passions, or providing safe harbor during more challenging times, they provided something many could not: understanding, loving acceptance, and a belief in the goodness of my son’s personhood.  

The hard truths, though, were also in abundance along the way. Societal rejections occurred, from the looks of despair on the mothers’ faces of his first playgroup when I shared his diagnosis (as if their kids could catch it), to family member responses that we had been cursed, or that it was best to keep his diagnosis a secret.  Social invites from his classmates were few, and there was a church that never reached out again after he had a crying spell while others silently gawked. A public school used suspension as punishment for the challenges inherent to his disability, and there was a poorly trained school aide who would later scratch my son. Private school administrators held my nine year-old son down until his fight left him and he fell into slumber; he was apprehensive to go to his class due to fears around sudden surprises and noises.

During a particularly hard time, I hired a home play therapist for a couple of hours to simply be with him--to bond, to form a friendship. After such hard school experiences, he became increasingly scared of new people and situations, and would hide in a closet or under a blanket when he had to meet them, though he was cheerful and talkative as he avoided all visual contact. One therapist--who showed great promise bonding so nicely with my son, eventually drawing him out from hiding--abruptly quit, providing superficial excuses. I later learned she had a long history of quitting families because she had a type of child she liked to work with, and apparently my child didn’t make the cut. I was forlorn over yet another rejection. I sat on a couch as tears burst forth, shoulders hunched over, my fight and resolve leaving me.  How could I keep finding the strength to continue through so many marginalized moments? How could I stay strong for my vulnerable son?

My son walked over. “What’s wrong?” he asked. I spoke honestly. “I’m just sad that she decided not to continue to come over and play with you.” My son’s face showed a tender expression as he walked over to the couch and sat next to me. He softly said, “I’m sorry,” as he sweetly placed his head on my shoulder.  We just lingered that way together for a few minutes.

At that time, my son rarely sat still, and certainly not right next to someone. He was so traumatized by many of his life experiences, that I hadn’t seen displays from him that he considered the mindset of another. In that moment, my tears was suddenly reconfigured from sadness to joy. Moments of such empathy and pure presence are rare gifts in life, and there was my resilient son fully-present, sharing such a soulful gift with me. In that moment, he reminded me that we are not defined or limited by another’s interpretation. Our loving bond held the power to trump bias and setback.

A few years later, when much had been overcome, and his coping and reflective skills had grown exponentially, he looked at me one evening, gently and sweetly saying, “Mom, you saved me.” Around the same time that he began to initiate tender hugs and spontaneously say,  “I love you.”  He was 14.  

I realize, though, how much my son saved me. By his courage, he taught me how to live more fully, experiencing all my highs and lows, neither boastfully nor blamefully, but rather with acceptance. By his presence, he taught me that no matter the emotional pain of any one moment, loving connection ultimately defined and empowered us. For whether we were joyfully running together through a park without a care in the world, or crying together through a more difficult time of struggle and rejection, we have lived our moments, however they came to us.  We have lived them together, in light, in love, in truth.

Abandonment.  Isolation.  Marginalization. Judgment. Fear. Autism didn’t deliver those things; society did.

Strength. Resilience. Overcoming obstacles. Triumphant joy. Meaning.  Society didn’t give me those things; my beautiful son did.

He just turned 18.  He beamed by his birthday cake, with that same tasseled curly hair and eyes that shine, “I feel like part adult, part kid. I’m a little of both.” He also describes himself as “part autistic, part typical.” His siblings stood around him making silly faces together as the camera snapped.  He composed a song on Garage Band in honor of his birthday and watched a favorite elementary aged show. He also put out bird food and hoped to see the family of doves again that have been recent visitors to our backyard.

He talks a blue streak and has a quirky sense of humor, often cracking us up or himself.  While he still has struggles uniquely his own, he has learned to cope better, no longer displaying the big emotional outbursts that characterized his earlier years. His spirit is calm.  I now have the pleasure of frequently hearing him spontaneously call out, “I’m so happy!”

Just like those early years, his path going forward is unknown and feels unplanned, as traditional milestones do not come to him on the world’s prescribed timetable; yet, as I learned early on, the unknown holds possibility, joy, and hope. It is a different and unexpected path, but it is a path that holds those moments of purity and beauty just the same.

He states that he plans on always attending his school, which he loves.  Thankfully, they do not arbitrarily graduate and push their students out at any certain age, but rather continue supporting their social and emotional growth into young adulthood. He also plans to live with us, his parents, forever.  He wouldn’t mind getting an apartment one day in a high rise (for those fun elevator rides) and also near a train track (for those exciting swoops of power of a passing train). Whatever his future holds, our family will be there, happily by his side, sharing in his passions, swept up by the power of love.


A version of this essay was originally published on cheeselesspizza.blogspot.com.

Monday, February 18, 2013

Ibby Grace: I Was A Self-Loathing FC Skeptic

Elizabeth J. Grace
www.tinygracenotes.com

You can read in Loud Hands: Autistic People, Speaking about the shall-remain-nameless professor who said in front of me and many others in graduate school that autistics did not know what it was like to be themselves because they had no theory of mind, so one had to read research about them done by others in order to understand them at all, (which presumably if you were one of them, you never would anyway -- this part is logically editorialized by me).

There was another professor who said in a large class of aspiring special education and psychology researchers, "Except for Grace, the idiot savant, who doesn't count," because I recalled more than seven allegedly random numbers which were not actually random, but had a clear pattern, and he hadn't told me ahead of time that the object of the exercise was to demonstrate that nobody can recall more than seven random things in short term memory.

Those two professors I mostly steered clear of. A third one, I trusted, because he is lovely.  He told me that facilitated communication (FC) was a dangerous non-scientific fad which co-opted people's voice and autonomy, and we, as scientist-practitioners, had to reject such nonsense, even though we should still go to TASH, where some people believed in silly things. He meant this nobly, and I believed him. But I still didn't feel safe enough to tell him who I was, that his colleague had hit the nail on the head with the completely inappropriate joke of "idiot savant."

My graduate university is famous for its brilliant education program, which runs several of its own conferences, and from which one can get a job even in an economic downturn. I was well-trained in several kinds of sciencey goodness by some seriously important people. I kept my hands in my pockets all the time and made sure nobody ever came to my apartment while making a big giant show of becoming elected President of the student association to demonstrate my ever-loving sociable respectability.

I spent almost all my spoons, and became quite ill in the process, but at least I learned really important scientific academic things, like how to be patriarchally condescending toward my fellow Autistics, "protecting" them from themselves while I secretly cowered in the migraine-inducing limelight, doing whatever I could to avoid exposing my need for shade and quiet and peace. (I also learned really amazing actually useful things, such as see link below.)

So when you hear me now, as you will hear me now, defending people whose voices are made manifest by typing, you should know that I am not a scientific naif. Here is what happened: I met many people who communicate by typing (as I often do myself, when doing online chat, etc.) and found out from them what their life experiences were. In epistemological terms, this is sometimes called phenomenological knowledge, or to put it more idiomatically, getting it from the horse's mouth. I consider its warrant stronger than that of many of the quasi- and experimental studies that have been used to devoice those who are non-verbal, because of the question of goodness-of-fit. In other words, I am a person who has been carefully trained to understand what various kinds of research studies are able to show and not show, and here is an excellent book I was lucky enough to help edit for the top ed research organization about just that topic, if you are interested in delving more deeply into it for yourself.

And it is because of this that I have changed my mind and attitudes about the breadth of communication choices of people whose way of communicating is through typing, even if they are not yet entirely independent with it. In other words, you can tell me all about FC being 'unscientific,' but know this is something I've thought about long and deeply, and I will likely answer you in graphic detail about ethnography, phenomenology, epistemology, knowledge warrant, and patriarchalist colonialism. I can do this for a very long time, because I was once like you are, if you are like I once was.

Thanks for listening.

Best,
Ib



Previously published at www.tinygracenotes.com.

Friday, February 15, 2013

Meeting Myself for the First Time

Robert Moran
blog.robertmoran.org

Today I went to my first meetup for autistic people. It was both eye opening and interesting, I honestly had never spent much time with other autistic people. In fact I have never met any other autistic people in real life before. All of my friends and coworkers are neurotypical. So it was like meeting me for the first time. The last time I had ever spent any time with an autistic person was when I met Temple Grandin at an autism conference at UCLA 20 years ago. Yes that Temple Grandin and yes 20 years ago.

The group was fairly diverse in ethnicity and age. As I looked around the room I saw myself being reflected back at me. That was not something I could ever experience with my neurotypical friends and coworkers. I sometimes felt that they did not understand me. That was probably because they are not like me at all and could not identify with me. Humans tend to socialize in groups with people that are like them. We call those similarities culture, religion and so on so forth. I guess there is some sort of autistic culture with its own body language and behaviors and the manner in which we perceive the world. I never noticed that until tonight. When I walked into the room I knew that I was in a room full of autistic people just like when I know when I am in a room full of neurotypical people. There was no criticism just acceptance and the freedom to be who we were without the need to conform to neurotypical norms. It was perfectly appropriate for one attendee to wear headphones to protect himself from noises. Some autistics are sensitive to noise. There was no pressure to act normal we could just be ourselves.

When I am with neurotypicals there is this pressure to conform to societal standards and to peer pressure which was the topic of discussion for tonight. When asked if anyone had an experience as to whether or not a neurotypical person had all pressured us into doing something we didn’t want to do, or try and take advantage of us or bully us, we all had a story to tell. It reminded that we all have had to struggle as a result of our autism. That commonality binds all autistics together in a way that I can’t share with my neurotypical friends and coworkers. I think it is because no matter how well-meaning my friends and coworkers are they don’t realize that they are part of the problem. They don’t understand us and we know and they don’t always know that we know it.

I believe that neurotypical people should take classes in how to behave like an autistic person and then act like one of us for a day and see what people say to them or how they are treated.

Either way it was freeing to be able to spend time with a group of people with whom I could identify with in manner. With this group it was perfectly acceptable to be socially awkard and miss social cues and not make eye contact with each other if we didn’t feel comfortable doing so. In fact, it seems we were expected to be that way. It was both freeing and fulfilling. It was a type of freedom that neurotypical people could not comprehend. I was free. I was just me.



Originally published at blog.robertmoran.org on February 9th, 2013.

Wednesday, February 13, 2013

Fox News Asks, Can Autism Be Prevented?

Emily Willingham
www.emilywillinghamphd.com
www.forbes.com/sites/emilywillingham

It’s happened again at Fox News. After taking down a story last year that was packed with misinformation about genetically modified foods -- headlined “What you need to know“ -- Fox has now offered up another similarly underevidenced article, this time headlined “Can autism be prevented?”

Short answer: No, not usually.

In spite of that, the article goes longer and turns to one ‘Rober’ (sic) Melillo, who practices something called “chiropractic neurology.” The unbylined article says about autism:
"The statistic rates used to be one in 150 -- so how did we get these new numbers?  Dr. Rober Melillo, co-founder of the Brain Balance Achievement Centers, spoke with Dr. Manny Alvarez, senior managing health editor for FoxNews.com, about the science behind autism, as well the facts and myths surrounding the condition."
Melillo, in fact, does neither. Instead, he exhibits a rather basic grasp of genetics, blames the autism “epidemic” completely on environmental factors, and then, the article says, blames genetic “predisposition” and environmental factors together. If you’re confused and need some clarity, well guess what? Melillo’s got a book to sell you. The article says:
"Fortunately, Melillo identified numerous preventative measures parents can take to better ensure their child will not be born with autism. All of these measures are included in his book, Autism: The Scientific Truth About Preventing, Diagnosing, and Treating Autism Spectrum Disorder -- and What Parents Can Do Now."
Natch. Most of the “measures” remain hidden in the pages of this book -- which you can purchase! -- but the one the article cites? Prenatal vitamins. Raise your hand if you took prenatal horsepills before, during, and after pregnancy and still had a child with autism. Melillo seems to be referencing this paper but misinterpreting the odds ratio data. The authors note the limitations of their study here in the full text of the article, which included that it relied on maternal recall of vitamin intake around pregnancy, several years after the pregnancy. They also did not collect information on diet. So, sure, take your prenatal vitamin, but don’t do it because you think it’ll prevent autism.

Melillo then helpfully offers that autism is “essentially an imbalance in the brain.” That’s likely useful for him to say because, as you might have noted above, he’s the co-founder of the Brain Balance Centers, offering a proprietary program and franchises scattered around the country. Their operating basis is this “imbalance in the brain.” I once wrote a critique of what I found on the Brain Balance Centers website (warning: critique’s a snarkorama), which brought not only a whole lot of very similar comments in favor of the centers but also a series of emails from various center administrators. It was … interesting. In spite of my comments on and exploration of the irrelevant references the Brain Balance Center cites here, these unhelpful citations still remain on their page called “The Truth.”

After offering in the FoxNews article the further cutting-edge observation that research into the mechanisms of autism is “going towards understanding what is really happening,” Melillo suggests that most allergies and food sensitivities and immune problems “really start in the brain.” That’s such a huge, general statement that I’ll just generally respond, No, they generally don’t. Blame your bones or the thymus or T cells or B cells, but don’t blame the brain.

Obviously, Melillo has every right to peddle his book in high-value venues and to set up centers that trumpet ‘cures’ for autism, ADHD, dyslexia, and Tourette’s. What baffles me is why the “senior managing health editor” at FoxNews thought that it was OK to let Melillo do this bit of unscientific PR-related marketing on his watch, particularly given the abundance of genuine autism experts who could have been asked instead.



Previously published at blogs.forbes.com/emilywillingham.

Monday, February 11, 2013

Proprioception and Autism

Jeannie Davide-Rivera
aspiewriter.wordpress.com

Tight rope walking
Photo © Lori/Nurse Nerdy on Flickr
Creative Commons License

[image: person balancing on logs atop
water, seen from behind.]
So why can I not keep my feet underneath me, or apply the correct amount of pressure when lifting an object? Why do I walk into a room like an elephant in a china shop, or send the milk contain flying across the room when it is too light? In a word -- proprioception.

What is proprioception?

Proprioception refers to one’s own perceptions. It an unconscious perception of movement and spatial orientation controlled by nerves within the body.

Our proprioceptive system allows us to locate our bodies in space, to be aware of where our arms and legs are in relation to one another, as well as, where they begin and where they end. Proprioception helps us perceive the outside world, telling us whether our bodies are moving or sitting still.

This system helps us perceive the amount of force needed to complete a task, and then allows us to apply it appropriately. It helps us measure and perceive distances, allowing us to move through our world without crashing into everything around us.

Child and adults with autism often have difficulty with proprioception and very well may just be the thing that goes bump in the night … and the day, and at work, and in the streets. Poor proprioception may likely be responsible for those many bruises, skinned knees, and torn stockings that plague our days.

It can be difficult to explain how we, those with Asperger’s syndrome/Autism, can be so clumsy in our day-to-day activites, but so adept when we are intently focused. I spent a great deal of my life dancing. I could dance with the grace of a swan, and fall down steps on my way off the stage.

I believe the difference is the intensity of our focus. We can, for a short period of time, intensely focus on crossing a balance beam get to the other side. However, it is impossible to sustain that level of focus in all our activities 24 hours per day. I am sure that I would never fall down again, if I could focus on every step I took to the exclusion of every thing else -- with no distractions and no interruptions.

While a “normal” person unconsciously perceives and is aware of each step they take, an autistic person must think about and focus consciously to perceive what comes naturally to others.



Previously published at aspiewriter.wordpress.com

Friday, February 8, 2013

"Self-Injurious Behaviors" (SIBs): Let’s Discuss

Ariane Zurcher
emmashopebook.com

I’m continuing to research SIBs, which stands for “self-injurious behaviors.” It’s far too complex a topic to tackle in a quick 800-1000 word post. There are a number of topics it seems important to discuss, which all fall under the heading of “self-injurious behavior.” (Feel free to add more in the comments section, this is definitely a work in progress.) I’ve broken these topics down to include:
  • The language we use to describe such actions.
  • The perception (usually of neurotypical parents, caregivers, doctors, school employees, educators and the general public) of what these actions may or may not mean, this is particularly critical when the person taking such actions is partially speaking or non-speaking.
  • The personal experiences of those who have engaged in such actions that may or may not lead to real injury.
  • The experience of those who want to help and/or are in a position where they may be held accountable for the actions or inactions taken. (This includes parents who love their child and would do anything to lessen their child’s frustration and pain.)
  • What can be done to help those who head bang, bite, pinch, punch or engage in actions that lead to serious and/or permanent injury?
  • What can be done to help those who head bang, bite, pinch, punch or engage in actions that are difficult to witness, but do not lead to permanent or serious injury?
I will try to cover all these various sub-topics, but first I’m going to tell you a story.

Emma sits cross-legged on the floor in our living room. Her tutu billows about her plump legs, its pink ribbon sash lies undone near her. In one hand she holds one of my red suede pumps, its small round heel directed at her forehead. Wordlessly she smacks her head with the shoe’s heel over and over again as if she were driving a nail into a wooden plank. 

“NO! Emma, don’t!” I plead, running over to her. I take the shoe from her, kneeling down to survey the damage. There is no blood, just a small pink mark above her left eye where the heel made contact.
Instinctively I pull her into me wanting to comfort, but she resists. She stares over my shoulder. No sign of pain, there are no tears, no distress. Her face is the face of a perfectly content toddler. Whatever emotional trauma I imagine for her is mine alone. She turns away from me and reaches for the other shoe lying a few feet away. 

“No Emma! You cannot hurt yourself,” I say as though this were a natural thing to remind such a young child. Bewilderment overwhelms my shock. Emma stands up and wanders off, leaving me with one red shoe in each hand.

This was how I responded to Emma’s seemingly bizarre actions. This was how I continued to respond to Emma when she began to bite herself. This was all I knew to do. Remove the thing that was causing damage, except that when that “thing” was her own fist or fingers or teeth I was powerless and defeated. So I begged her, pleaded with her to stop, usually in a loud, panic-stricken voice. Why was she feeling compelled to do such a thing? Was it a deep need for sensory input? Did her head hurt? Was she trying to cope with internal pain caused by some outside source -- the daylight streaming in through the window, the heat from the radiator, the clicking noise the steam heat made as it surged through the pipes, was there some noise only she could hear that bothered her, did the fabric from her tutu itch or dig into her skin, or was it something else that I couldn’t see or understand?

I spoke with experts, doctors and other parents, but I never learned how to help her. I watched YouTube videos and read research articles, I spoke to school staff, psychologists, and people who work in hospitals. Nothing I read or heard about made much difference other than to make me feel even more panicked and fearful. The language used by those in the field of Autism is almost uniformly fear based and along the lines of deficit thinking. By saying someone is engaging in “self-injurious behavior” we are suggesting they choose to “behave” this way. But what if this is actually incorrect? What if you were unable to make yourself understood through spoken language and had a horrific headache? What if you could not use words to describe the pain you were in? What might you do? What if you felt such a surge of frustration you lost the ability to speak? What if you could not find something or something broke or the music you were listening to or the DVD you were watching was calming and beautiful and it suddenly, abruptly, stopped or skipped, what if you needed it and now it was gone? What if the only way you felt better and calmer was by hitting yourself. What if the very sensation viewed by onlookers as harmful was actually helpful to you?

To someone like my daughter, her response to upset of various kinds is not the response of a child being difficult or bratty or frustrated. Hers is the response of someone who’s world is coming to an end. She is in full panic mode. If she said, “I can’t take this. I’m feeling completely overwhelmed, I don’t know how much longer I can hold on, I just want to scream and punch something!” We would nod our heads and say, “Gosh I know exactly how you feel! I’ve felt that way too! Let’s talk about it!” We would go over and hug her and she would take solace in knowing she wasn’t alone and the hug might make her feel loved and she might even feel safe enough to talk about it more. Her situation wouldn’t change, the feelings leading up to uttering those words might not change, she may still feel overwhelmed and not know how to change those feelings -- but through talking about them, we talkers have come to see there’s some comfort to be had, because our brains are programmed that way. This is what most of us, who are more neurotypical than not, have found. Except that my daughter’s brain doesn’t work that way. Talking and hugs do not help her when she feels overwhelmed, in fact talking and hugs increase her upset!

In addition Emma’s experience of pain is different from mine and many people’s. Emma can twist and yank out a tooth within an hour of it feeling even slightly loose. Emma can have an ear infection that is so bad the pediatrician was incredulous. Emma can show no signs of illness but is found to have strep throat, caught by her doctor only because we happened to be in his office for a routine wellness check up. Emma craves sensory input on a level Richard and I find astonishing. She turns the volume up as high as the TV or DVD player will go of her favorite songs or movies. We are literally blasted out of the room she is in. Sensory input is needed at levels we cannot tolerate. For Emma this isn’t a “behavior,” this is a need. How this plays out when she bites or hits I cannot fully know, but that they do, is something I feel sure of.

Last summer I spoke to my friend Ibby who explained why yelling at Emma to stop hurting herself was not working. “It’s a lie,” Ib said. She explained that by telling her she “couldn’t” do something, something she’d just done right in front of me, as evidenced by the teeth marks on her arm, was a lie. A lie that made no logical sense. So I stopped saying things like that. Soon after I stopped yelling at her, I realized that anything I said could be heard as scolding, judgmental, and counterproductive, especially when done in a loud voice. Now that I have a better understanding of language and how language can come and go, I understand it isn’t just Emma’s ability to communicate, it’s her ability to understand all verbal communication. All spoken language, both hers and anyone else’s goes out the window.

I have to stop talking. This is counter intuitive for me, but it’s key. Stop talking. I have to remind myself of this. If Emma is in the midst of an upset where she has begun to bite herself, no amount of logic will prevent her from biting mid-bite. When Emma is biting herself this is an indication to me that I need to be quiet. Sometimes she will come to me and allow me to put my arms around her in a firm embrace, other times she will reject all contact. In the midst of an upset I have learned the single best thing I can do is -- nothing. No words, no physical contact, nothing. I remain nearby and I wait for her to come to me if she needs or wants to. Once she is calmer, I have a chance at figuring out what led up to the upset … maybe. Once she is calmer I can try to see if there’s a pattern so that I can interrupt it next time before she gets to the point where biting herself seems like the only solution.
The single most unproductive thing I can do in the midst of Emma’s upset is to scold, admonish, restrain and judge her. This may seem obvious to many of you, but it wasn’t obvious to me. Some of the things others have recommended:

Judy Endow wrote: ”DISCOVER AND ELIMINATE PHYSICAL PAIN. I have worked with many autistics who are in REAL PAIN and trying to change behaviors is like telling someone you love that you don’t want to know anything at all about their pain and in fact you want them to learn to behave as if they did not have any pain at all! So many behaviors turn out to be physical -- one little girl who banged her head so hard it put holes in the walls, caused concussion and wore a locked helmet was discovered to have had head lice for so long that the lice had burrowed so far under her skin she had to have some sort of specialized treatment more than lice shampoo to get rid of them. She had lice for over 3 years before it was discovered due to them burrowed under her scalp!!! Once the lice was gone so was the head banging.”

(Judy Endow has written a terrific work book Outsmarting Explosive Behavior and while she doesn’t mention “SIBs” specifically, the steps she suggests will certainly be helpful for many.)

In answer to my question “Was there anything that helped? If so, what?” Kassiane wrote: “Treating my cluster headaches. Leaving the SIB alone, treating it not just as a ‘mysterious autism behavior’ but as a release valve for stress, and eliminating or reducing the input that was pushing that far. Changing the situation has a much higher success rate than “stop doing that,” because I need a way to cope with the situation that leads to chewing my hand … I dont even notice until I’m a bit … gnawed.

Anonymous 1 wrote: “I do remember, in those early days, that I liked the head-bashing because I only needed to do it once or twice. I could pound my fists into the dirt until my knuckles scabbed up, but the pain that I felt would barely measure up to the sound of my own screaming in my head. No matter how much I tried to let it out, it just never worked. I would punch myself into exhaustion and fall asleep, still feeling completely trapped, helpless, and alone. I would wake up afterward hearing my own screaming in my head.

“When I bashed my head, though, the screaming stopped. It just cut off, and then the pain spread over my entire scalp, like a blanket over my brain.

Anonymous 2 described a prickly sensation all over their scalp caused by a new haircut.

Many spoke of the frustration leading up to the biting, hitting, etc. Redirection seemed to help less serious actions, but everyone, everyone agreed that scolding, punishment, or anything that could be viewed as punishment made the punching, hitting, banging, and pinching much, much worse.

Having said all of this, we are fortunate in that Emma has never done more than left a mark on her arm or hand. But there are others who do. There are children and people who break bones, break the skin, and do permanent damage to themselves. What then? What does one do to help them? What can be done?

I’m afraid I have no answers for these situations. But whatever the “remedy” or “therapy” being employed, we have to ask the person who is being subjected to these various things if it is in fact helpful and if they are unable to communicate by typing, writing, or speaking, we must ask ourselves, Would I want to be treated this way?” This is, at least, a starting point.



This essay was previously published at emmashopebook.com.

Wednesday, February 6, 2013

No You Don't

Sparrow Rose Jones
unstrangemind.wordpress.com

We're grateful to Autistic advocate Sparrow for letting us publish her essay, which inspired our previous contributor, parent Beth Ryan, to write The Cost of Compliance is Unreasonable. Please know that Sparrow's essay may contain triggers regarding autistic girls and conditioned compliance.

When I meet parents of young Autistic kids, especially after they find out how much I was like their kids when I was their kids’ age, many of them say “I hope my kid is like you when she grows up!”

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I used to say, “I hope she’s much better off than I am,” or simply, “No, you don’t,” but over time I learned that parents refuse to accept that answer. Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility. Or maybe they’re just baffled. But sometimes they even got angry so I finally learned that I should answer, “Thank you. That’s very kind of you to say.” Reinforced behavior -- reinforced by social censure if I dare give the wrong response. And I am exquisitely sensitive to social pressure -- it was one of the biggest clues that made me reject the misdiagnosis of schizoid personality disorder the moment I was given that one.

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But the truth is that they do not want their child to turn out like me. If your Autistic child turns out like me, you have failed. Your Autistic child deserves so much better than to turn out like me.

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Oh, I know what the parents are seeing when they say that. I’m not so mindblind as to not realize: they see a very articulate adult. My writing skills are excellent. My vocabulary is quite large. And, while the largest part of it is self-taught, I am extremely well-educated. I even have university degrees: two bachelor’s degrees and an ABD (that’s “all but dissertation.” I dropped out of graduate school about two inches away from a doctorate). They see that and they think, “my child is non-verbal. My child goes to school and crawls around on the floor, meowing like a cat. My child still wears diapers while all her age peers have been toilet trained. My child bites and hits people. My child bites and hits herself.” And so on.

~~

Then they hear that I was many of those things, myself. I was kicked out of the classroom for crawling on the floor and hiding under the tables. My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom. I would not speak. I bit people, hit people, bloodied other children’s noses, hit them with sticks, kicked, and spat on people. I could not hand-write and so I did not do school-work. I wet the bed until I was fifteen years old. I set things on fire. I was a very troubled and trouble-causing child. As a teen, I was expelled from the entire county school system and my parents had to find a private school willing to take me. At sixteen, I dropped out of school altogether.

~~

And yet, they think, you turned out all right. I’m told I’m inspiring. I’m told I give them hope that their kids will be okay. How dare I dash that hope by telling them that no, I do not want their children to turn out like me. Maybe they think I say that because I hope their children do not succeed? That is not the case at all. The only reason I’m typing these words today is because I want your children to succeed. I want you to help them be happy, healthy adults. I want you to learn and I want you to do it better. I don’t want the children of today to spend tomorrow going through the things I lived through yesterday.

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I was raped. I was abused -- domestically and otherwise. I was molested. I was taken sexual advantage of. I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves and I want you to teach them to own their bodies.

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Children like yours -- children like I was -- are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.

~~

Even something so seemingly simple as the constant pressure to smile. Everybody wanted me to smile. And I was told that I was such a pretty girl and ought to smile. And I was told that I was so pretty when I smiled. And it was so important to everyone that, after a while, I sat in front of the bathroom mirror practicing faces, trying to find the muscle-feeling that would make a smile. I practiced and perfected until I could make a smile on demand. I worked hard until I had a smile that made everyone happy and got them to quit bothering me. And now, when I am afraid that I am being a bad girl, when I am resisting what someone else wants, when I am feeling the pressure to be a rag doll again, to be whatever and whomever I am being asked to be, I put on that smile as a shield to protect the tiny scraps that are left inside me as I give in and give up who and what I am because the pressure to comply is so huge and so uncomfortable. And because I was never allowed to say no, never allowed to own myself, never allowed to not-want and still be a good-girl.

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You do not want your child to grow up to be like me.

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I live in crushing poverty. I live on SSI, Medicaid, and food stamps, which means that I live about 20% below the poverty threshold. If I marry, I lose much of that and become dependent on my husband, stuck in a relationship that I can only hope stays good because I have no resources to leave. If I marry someone else on SSI, the two of us lose about 25% of our cash and resources, so I have strong incentive to live and love without the legal protections that marriage can bring. With the current political climate and the battle over same-sex marriage, I think most of us now realize what it means to not be allowed to marry. My situation is somewhat different in that I am allowed to marry but I am penalized so grievously if I do that it is not really an option for me.

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Although I am so poor, I feel wealthy and fortunate because it is such a big step up from how I used to live. I have never been able to keep a job, which means before I started getting SSI, I was unable to consistently keep a roof over my head or food to eat. I spent a lot of time sleeping in the park, in public restrooms, on loading docks. I ate at soup kitchens and out of dumpsters and off what food I could steal. I entered into sexual relationships with strangers in exchange for a place to sleep and food to eat. It’s called survival sex and it was really easy for me because of my life-long training as a rag doll, compliant, always more concerned with what everyone else wants than what I want, feeling frustrated and worthless because, despite that strong urge to please I never could actually please anyone. So it was easy to give up my life, pitiful though it was, to someone else again and again and again in order to stay alive. My life was not worth much, but it was all I had and I clung to it.

~~

Survival sex means abuse. Survival sex means being asked to do shocking and disgusting things -- not even all of them sexual so you probably can’t even imagine the things I’ve been expected to do in order to survive. Survival sex means walking across the mile of bridge once again because someone thought it was funny to drive you out of town and drop you off alone, someone thought it was easier to deal with that slut they spent the night with by leaving her far away than risk that people they know might find out they were with her. Survival sex means risking your life, every day of your life, in order to stay alive.

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You do not want your child to grow up to be like me.

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I am well and truly disabled. I thought going to university would help change that, but I developed more disabling conditions while I was in university and struggling to comply. I didn’t feel worthy to ask for accommodations that might have helped me. I was brought up to believe that I have to do things the way everyone around me does them and even then I am of less value than them because almost always, they do it better than me. But I can’t ask for special treatment. I have to keep pushing to do it the way everyone else does. I begged to use a typewriter for school work but I was refused. I can’t have special treatment. I will learn. I will get used to the pain. I will get used to the agony. I just have to keep trying. I just have to keep pushing through. If I ask for accommodations, I am admitting weakness. I am asking for special treatment. I am getting there on an unfair advantage and it won’t count.

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So I actually went through ten years of university without accommodations for my dysgraphia, my central auditory processing disorder, my vestibular hyperacusis, my dyspraxia (mild though it is), my periodic mutism, my shutdowns, my meltdowns, my hypernychthemeral syndrome, my visual migraines ... and the depression and anxiety and agoraphobia this collection of misery brought on. Because the thing all those conditions have in common is the modifying pronoun: they are mine. They are mine and I am supposed to own them and take responsibility for them and budget my time and apply myself (because I am not “living up to my potential”) and conquer them. I am not supposed to ask for help. I am not allowed to ask for help.

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You need to teach your child how and when to ask for help. It is just as important as teaching them how to say no and mean it.

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You do not want your child to grow up to be like me.

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Disability is about more than impairments or barriers to doing. Disability is about societal discrimination and barriers to being. I am not just disabled by my conditions. I am not just disabled by my difficulties in saying no and asking for help. I am disabled by the world around me and the expectations it puts on someone who looks like me (and writes like me!) and the attitudes it has about what I can do and what I cannot do.

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I face strong discrimination every day. I am treated as lesser because I live on SSI. I am frequently accused of scamming the system by people who only understand disability as impairment in mobility or visible deformity. I am told, “you look just fine to me” by people who have never set foot inside a medical school. I am given unworkable “solutions” and told I’m ungrateful and not trying if they will not work in my life. Those who don’t directly say anything to me show through their behavior that they view me as lesser, they think I have given up, they think I didn’t try, they think I am lazy, they think I am living off their tax dollars. Every day, I hear someone say, “why should I have to work so hard to pay for people who won’t?” I live in a world that tells me every day, directly and indirectly, that I am a worthless parasite.

~~

If I do not talk about being Autistic, I am viewed as an inferior example of a human, one who can barely get by, a slob who can’t keep her house clean, a lazy, good-for-nothing, welfare queen. If I do talk about being Autistic, sometimes I am not believed -- because I can talk at all. I sometimes suspect most people don’t believe in my autism because they saw Rain Man or they saw Touch or they saw Change of Habit or they saw Mercury Rising or they saw Bless the Child or they saw whatever godawful made-for-TV movie-of-the-week that convinced them that they know what Autistics look like and I ain’t it.

~~

Trust me, I was just as shocked to find out I am Autistic. When I grew up, most of your kids would not have been diagnosed. They say we have an “epidemic” of autism, a veritable tsunami of Autistic kids. But when I was a kid, a good 90% or more of your kids would not have been diagnosed with autism. They would have been like me, labelled as “emotionally disturbed” and then treated and mistreated as mysteriously broken -- often treated with “tough love” to try to break them out of their “willful disobedience.” Everything people say about your kids today? That they are brats, that they are spoiled, that they just need a good spanking? Those things were said about me, with the exception that I didn’t have the autism diagnosis or the modicum of understanding your kids have so I was spanked and tough loved and abused into who I am today.

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I am not convinced that most ABA therapy is much different from the abuse I lived through.

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I still see parents and teachers abusing children in the name of treatment.

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Too often, I see a different label -- autism -- but the same lack of understanding surrounding it.

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And those kids are going to grow up into a world that doesn’t want them, that doesn’t want to employ them, that thinks they’re scamming the system if they live on government support. The vast majority of Autistic kids are going to grow up to be adult Autistics like me. Even most non-verbal kids grow up to be verbal. Most Autistic kids are not going to grow up into the sort of adults that people look at and immediately want to help. Most of your kids will grow up to be like me. And that is criminal.

~~

Adult Autistics have a staggering unemployment rate. It’s around 85%. Many of us would love to work but are unable to find anyone willing to give us a chance. In most cases, it’s not that we can’t work or won’t work. In most cases, it’s that there’s no one willing to accommodate our needs, including the need to be accepted as people who look, sound, and behave differently. People are uncomfortable around us. I strongly suspect that the “less Autistic” we look, the more uncomfortable others feel around us. If we are very visibly Autistic, we are “other” and that is easier to accept. Not-like-me is much easier to handle. But the more we look “like everybody else,” the creepier it is for others when we turn out not to be like everybody else. The higher the expectations that are layered on us, the bigger a failure we look when we’re unable to live up to those expectations.

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Number one: don’t focus so much energy on making us look “normal.” That’s a waste of time. We’re not “normal” and we will never be “normal.” We are Autistics and we are better off when you focus your energy on helping us to be the best Autistics we can be. If we look “funny,” people will learn to handle that. They will get used to that. It’s more important that we feel safe, calm, happy, competent. It doesn’t matter as much what we look like getting there. If we flap our hands, if we don’t look people in the eye, if we communicate through typing or we speak in a monotone -- it’s okay. Those are not the things that matter. But I see so much focus on those things as if getting us to look right is all that’s required to enact a “cure.” Too many people seem to think that if we look like everybody else, their job is done and we are “cured.”

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But the monumental effort I put forth every day to try (and fail) to look like everybody else is sapping my talents and potential. All my energy, all my intelligence, goes into looking normal. There’s nothing left over to do a good job at something. When the most important thing is for me to look and sound like everybody else around me, all I have personal resources for is showing up. That’s all you can get out of me. And that’s not even enough for a job at McDonald’s. I know. McDonald’s fired me after two weeks.

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You do not want your child to grow up to be like me.

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I don’t have good answers. I don’t have easy answers. I don’t think there are good, easy answers. But I do believe that raising your child -- if your child is an Autistic -- is a much bigger task than just raising your child. If you care about your child, you need to be willing to reach out past your child. I do understand that raising a child, any child, is huge and takes all your time and energy. But if your child is an Autistic, you owe it to your child to reach past him or her and work on building a world that will accept your child. You have a responsibility to become an activist.

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It starts with how you treat adult Autistics. Do you listen to them, or do you insult them? When they tell you how hard their lives are, do you get scared for your own child and push the adult away? Do you take their anger too personally because you are afraid you might not be raising your own child in a way that will keep them from growing up to be filled with anger? Are you afraid your child will grow up to hate you?

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If adult Autistics scare you, do something! Listen to them! Take them seriously! Don’t treat them like children. Don’t tell them they can’t possibly understand your child because your child is different. No matter how much you wish your child were different, they’re not. They’re made of the same stuff as adult Autistics, yes, even the most scary adult Autistics.

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Your child is just as vulnerable to growing up abused and discarded.

Your child is just as vulnerable to growing up impoverished and angry.

Your child is just as vulnerable to turning out the way we adult Autistics have turned out and not just the ones that inspire you.

If you want your child to be someone who inspires you, you need to stop only valuing those adult Autistics who inspire you and instead value all of us. You will never understand how to help your child become the next Temple Grandin (or whomever your favorite adult Autistic hero is) if you do not take the time to understand how your child could become the angry Autistic activist who makes you want to cover your ears and hide.

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How you treat adult Autistics -- all adult Autistics -- is how you are telling the world to treat your child in twenty years.

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The kind of world you are working on building for adult Autistics today is the kind of world you are leaving your Autistic child to inherit tomorrow.

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You are working hard to raise a healthy, happy kid. What are you doing to make a world that kid will be able to live in?

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You do not want your child to grow up to be like me.

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So what do you want for your child? Whatever you want, it requires a lot of work and that work has to come from you and that work starts today, right now, this minute.

~~

What are you going to do next?

Monday, February 4, 2013

The Cost of Compliance Is Unreasonable

Beth Ryan
loveexplosions.wordpress.com

Today I sat in my dentist’s reception area waiting for my appointment. This time my panic had nothing to do with my fear of all things dentist.

I had just read this blog entry [Unstrange Mind's No You Don't].

It is certainly not for the faint of heart. My husband wept after reading it.

This woman articulated so many of my feelings about Evie’s autism -- giving them credibility and reason coming from a woman who has autism.

Last year at school, Evie was “flopping” often. Flopping meaning sinking to the floor. Some of her special educators felt like it was a behavior and by allowing it to continue, they would be reinforcing the behavior. I felt like maybe it was a behavior sometimes. Maybe it was a function of her motor planning/neurological disorders. We went back and forth about it.

Me stating that she needs time to process before acting physically. Give her some time, offer your hand, and 9 times out of 10, she will be fine.

Them saying that by not forcing (not the word they used but I can’t remember what it was) compliance we would be reinforcing that flopping is a way to avoid doing something she doesn’t want to do.

Aside from the fact that there is an actual medical reason why she cannot act immediately, I was very uncomfortable.

Finally, I emailed that I did not want Evelyn being physically forced to comply with requests unless she was putting herself or someone else in danger or really disrupting the education of other students.
This set off a shitstorm of emails and meetings. One educator told me that all of the people working with Evie were afraid to touch Evie after my email. But I digress.

I could never really articulate or even sort out in my own mind why it was so important that Evie not be physically forced to do anything.

Now I get it.

I don’t want my child, your child, any child to ever feel that her body is not her own. To know that nobody has the right to force her body to do anything. And I can now see how what this woman terms “compliance training” aka “90% of autism therapy” could be a slippery slope to making people like this woman, like my daughter, even more vulnerable to abuse.

Children with autism are being taught to function in the world by learning to pretend to behave like neurotypical people.

For instance, a big focus of Evie’s therapy was “making eye contact.” I couldn’t understand why this was so important.  Finally, I said, “I really don’t care if Evie makes eye contact. I want to find a way for her to communicate what she needs.”

Who does eye contact really help? Does it help Evie when it seems aversive to her? Or does it help other people feel more comfortable with Evie?

I’m getting seriously pissed off writing this.

Or how about this one? I have been arguing that I don’t want to see potty training as a focus for Evie at this point because I don’t think she is developmentally ready and because I really want the first, biggest, and if need be only priority to be helping her to communicate basic needs.

One of the arguments provided by one of her educators was that by wearing underwear instead of diapers, her classmates would not feel she was so different.

I can’t believe I even kept my hat on after hearing that one.

Evie is different. She will always be different. And if school’s answer is to make other kids feel more comfortable about Evie’s differences by pretending she is something she is not, then I don’t even know what to say. I wonder how comfortable the kids will feel when Evie pees through her clothing while sitting next to another child. That ought to make her some friends.

Can’t we teach kids to honor differences? Probably not, when as adults, we are so focused on hiding them away.

Evie has a tendency to withdraw. She tends not to withdraw when the people interacting with her don’t try to force normal on her -- and follow her lead. I will never live in her world and know what she is feeling. But I would go there forever, without a moment’s hesitation, if I could. To keep her company there. Because as much as I love her, as much as I try to go to her where she is, it must be pretty freaking lonely and scary a lot of the time. Not even her mama understands.

And I can speculate away at what Evie needs. And so can everyone else.

And we can try all different types of therapies and approaches to helping her achieve goals. From here forward, only goals that will be meaningful to Evie and what she needs to maintain her happiness.

But after reading that blog post, I will never allow anyone to force my child to be compliant. I don’t care what her cognitive abilities are, unless she is in danger or endangering someone else, she gets to say, “no.” And like anyone else, there are consequences to saying no. Sometimes the consequences are negative -- like not getting the immense satisfaction of popping bubble wrap. And sometimes they are good -- not subjecting yourself to abuse.

It is hard for me to pick my head up and look to the future for Evie. Because there are so many things in the moment to deal with. Because the future is uncertain and unknown. Because someday I will die, and Evie will still be here. More alone. More vulnerable. And that terrifies me.

So this blog post inspires me to think about serving a population of adults living with autism right now. Many of them alone. Vulnerable. Serving them serves Evie’s future. Serves mine.

And more than think. To do something. Something significant.

But what?



This essay was previously published at loveexplosions.wordpress.com.