Unlikely Kids: Acceptance. Love, and Self-care: #AutismPositivity2015

In my New England backyard, after the long winter has finally passed and the snow has melted, it is now the season once again for The Dirt Pit.

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What started out as a few small divets in the lawn has become a giant tract of sandy, sensory fun. Every day, W spends some amount of time pacing in The Dirt Pit, sifting the soil through his fingers, throwing dirt in the air, and trickling it onto his hands and legs. Before he comes in the house, he empties piles of dirt and stones from his shoes. For half the year, my boy looks like Pigpen from Peanuts, Charlie Brown’s friend who carried himself serenely in a cloud of dust. When the weather grows colder, he will run his fingers through the freezing soil until his fingers ache with cold. He never played in our sandbox; he refuses the pricey sand tray I have for indoors. The Dirt Pit is where he finds peace.

There are a lot of ways our family is different, ways we have adapted to meet W’s needs. Most of these ways are not readily apparent to the outside observer. Because autism is an invisible disability, to the outside world we may just appear a little more loud or intense at times; we stay home more often and miss out on some events. But The Dirt Pit is a glaringly obvious sign that we are outside the norm in our neighborhood, and we’re not trying to put on a polished, manicured appearance for the outside world. For awhile, I tried to stop the growth of The Dirt Pit, but I’ve decided not to fight it. It’s where my boy does his “thinking” (as he says), and calms his body and soul after a long day of school. That’s more important than a pretty lawn.

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I suppose you could put a negative spin on the barren patch of yard. (“Autism ruins lawns! Autism costs families thousands of dollars in extra landscaping costs! Parents of children with autism spend more time sweeping dirt out of their houses than parents of typical children!”) I freely admit that it’s an eyesore. Someday, I will be happy to have a bigger garden, with some more fruit trees, or hydrangeas, instead of a giant pit of dirt in my yard. Someday, W will find different ways of decompressing his mind and regulating his body. But for now, I’m content with The Dirt Pit. After all, there’s less grass for me to mow.

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From Autism Awareness to Meaningful Action

April 2 was World Autism Awareness Day. I’m sure that all of you who haven’t been living under a rock are aware that autism exists. Many autistic advocates are rebranding April as Autism Acceptance Month, which is a much-needed change. Autism awareness without understanding or meaningful action leads to pity and negativity, rather than real support for autistic people. Too often, autism is depicted as a disease like cancer that ruins lives, costs too much money, or requires your donations or blue light bulbs for a “cure.” This kind of awareness stigmatizes people like W, creating a society where it will be harder for him to find a job, form relationships, develop healthy self-esteem, and otherwise make his way in the world. W doesn’t need to grow up hearing that he’s broken and in need of repair. He doesn’t need to be cured. He needs support, love, and acceptance for the amazing autistic person he is.

It’s hard enough to struggle in many ways with a disability, but it’s infinitely worse to do so and be characterized as a burden or a tragedy. So the first, and most important, step in autism acceptance is to treat autistic people with dignity and respect. My kid and people like him may do things that seem weird or different or incomprehensible. They will likely communicate in unfamiliar ways. Sometimes they will need more help to do things that come easily to the rest of us. Sometimes the things they are really good at will seem out of the ordinary. Sometimes they won’t want to do things like the rest of us. Acceptance means that these differences aren’t signs of brokenness; they are worthy of respect and understanding. I don’t want W to fit some narrow definition of “normal.” I want W to be the best autistic person he can be, in a world that doesn’t see him as defective.

So what does acceptance look like? Autism awareness means you can read a Facebook post and consider your work done. Acceptance calls for meaningful action. It is hard work to be autistic in a world designed by the non-autistic majority. Part of building a world with a place for my kid and others like him means that it takes creativity, planning, changes, and accommodations for autistic people to be included in schools, communities, churches, families, workplaces, and public places. It means embracing people who are different, listening to and trying to understand autistic perspectives, and making real efforts to identify and change the barriers that so often exclude autistic people from participating in public life.

Acceptance means recognizing that people who need support do not need pity. It means that people who struggle and need help still live worthy lives. It means that there is more than one definition of success in life. Happy April, everyone.

Autism: Not a Fate Worse than Death

In 2009, Jenny McCarthy said,

“If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f___ing measles.”

As I write, over 100 people have been diagnosed with measles, thanks to over a decade of discredited reports and generalized fears linking autism and vaccines. The reason that kids are very sick from a preventable illness are because some parents are afraid that living a life like mine, my son’s, and my family’s is worse than the threat of deadly diseases. If you are a parent who thinks you’re being put in a difficult position of choosing between two scary risks for your child, I need to tell you this: autism is not the end of the world. It is not a fate worse than death. Vaccines don’t cause autism, and autism is not something to be feared.

I get your fears about chemicals and toxins. My autistic child takes his lunch to school in stainless steel containers so that I don’t have to fear chemicals from plastic leaching into his food. His lunch is PB&J on homemade bread, because I don’t want to buy the store-bought bread with high-fructose corn syrup. I embraced extended breastfeeding, babywearing, cloth diapers, and homemade baby food. I get that the natural, organic lifestyle is best for our kids. But I had no hesitation about vaccinating my kids, and I would do it again today. I have an autistic child, who was born autistic and lovable and amazing, and I would never stand in line for the f______ measles.

Don’t just take my word for it. Please read these important posts including the perspective from autistic adults, who rightly don’t appreciate when others make their existence out to be a worst case scenario.

Vaccines Don’t Cause Autism, But That’s Not the Point. Stop Being Ableist

I’m Autistic, And Believe Me, It’s A Lot Better Than Measles

Everything I Need to Know about the Social Model of Disability I Learned from Reading Little House on the Prairie

When I first started learning about autism and W’s challenges, I read a lot of reasonable sounding information about the deficits that characterize autism and the help that my child would need. In the early days, I considered W’s struggles to be “behavior problems” to be corrected. After all, he was a child freaking out at school and acting in ways that the other children didn’t, distressing his teachers and classmates along the way. (I had a steep learning curve ahead of me to understand that anxiety and sensory issues were the root of his problems, not “behavior.”I assumed that the problems resided in W and, once he was diagnosed as autistic, everything I read confirmed this. I didn’t know any better.

A few months after W’s autism diagnosis, I first came across the ideas of the Medical Model of Disability and the Social Model of Disability. The Medical Model characterizes the way autism is depicted by just about everyone in our society today. It focuses on the deficits in the disabled individual that should be treated or fixed. When W was diagnosed, I was immediately referred to Autism Speaks’ 100 Day Kit, which is the perfect example of the Medical Model, highlighting all the symptoms of autism and the therapies that are necessary to correct them. In contrast, the Social Model locates the deficits in society, rather than disabled people, and calls for changes in society, as well as accommodations for the individual, so that the individual is able to access more opportunities. In the Social Model, we build wheelchair ramps rather than expecting people with mobility issues to just learn how to take the stairs. The Medical Model would say that my son is disabled by autism. The Social Model would say that my son is disabled by society.

Right around the time I first heard of the Social Model of Disability, I was also working my way through reading the Little House series by Laura Ingalls Wilder with M. I remember reading a description in one of the books of Laura going into town with Pa, and how anxious she was from the crowds and people. Of course, this little pioneer town probably had 100 people, but Laura was nevertheless nervous because her family spent most of their time out on their homestead, with few outings besides church and the one-room school house. Laura did not depict her anxiety in town as pathological or a problem to be solved; she was a country girl more comfortable in quiet places, away from crowds of people.

The more I considered pioneer life in 19th century America, the more I understood how setting makes a difference for when someone is disabled. Would W have been disabled in the same way had he been born in 1875 in Dakota Territory? In a society without large crowds, amplified noise, fluorescent lights, or groups of screaming preschoolers running around in echoing gymnasiums, would his sensory issues have caused him as much anxiety? In a culture where children had lots of physical work and activity, started school at a later age and often didn’t attend for long periods of time (depending on weather, farm work, etc.), had opportunities to learn hands-on skills, and attended highly-disciplined one-room schoolhouses where students worked quietly and independently at their desks, would school have been such a source of stress? I’m not saying that pioneer life would have been ideal, but as a thought experiment, I understood much better how context matters when it comes to disability. W will always be autistic, but by changing the environment and the expectations of people around him, maybe autism wouldn’t have to be as disabling as it is for him now.

Before W started preschool at 4 1/2, he really didn’t have any major problems at home. I never felt like anything was “wrong” with him. Clearly, there was something about school that caused his difficulties. After all, W wasn’t disabled until he went to preschool and was forced to cope with sensory overload and anxiety among the chaos of 4 year-olds. Our simple life that he led at home was manageable for him and he could cope with the demands extremely well.

My thinking and the questions I asked began to change. Instead of, “How can we stop W’s problem behaviors at school?”, I began to ask, “What can we do or change to help W feel safe at school, so that he can succeed there as well as he does at home?”

Autism Awareness: W’s Story

Originally published here in April 2013.

 

This is what autism looks like in our house: A few weeks ago, we ordered a new lunchbox for my son, W, for the start of his new EEE preschool program. I found a lunchbox with a solar system design on it, and I knew W would be thrilled. He’s been obsessed with the planets over the past couple months, and knows their names and order in distance from the sun, which planets are gas giants, their colors and other physical characteristics, the names of many of their moons, etc. But when W first examined the lunchbox, a problem was immediately apparent.

“Where’s Jupiter?” he asked. I looked at the image on the front of the lunchbox and, yes, Jupiter with its Great Red Spot was in its proper place in the solar system. But then I looked at the side of the lunchbox, where the names of the planets and the sun were printed. They were all there…except Jupiter. I could see W’s distress growing by the second. The lunchbox was wrong. He knew the planets, he loved the planets, he could recognize their images and read their names, and the solar system on this lunchbox was not the way it was supposed to be.

I have become an expert at creative problem solving, but I had to act quickly. I grabbed a marker. “Here,” I said. “You fix it. Write Jupiter’s name on your lunchbox where it belongs.” And he did. Then W spent the next hour drawing remarkably detailed pictures of the solar system, over and over, accurate in every way, except for Jupiter, which he omitted from every drawing. And the storm passed.

A lot of parents say that they knew early on that something was different about their child, long before the autism diagnosis. They noticed problems and talked to their pediatricians; they knew something wasn’t right with their child’s development. Not me. I didn’t have a clue. I was totally blindsided by my son W’s autism diagnosis. And yet now that I know how and why he’s different, it makes perfect sense.

After all, W’s development was typical in just about every way. He spoke his first words at 10 months, had a vocabulary of over 50 words by 18 months, and talked pretty much nonstop. No language delays there. In fact, he had no physical delays of any kind, he was interested in other people and super attached to me, and he was very smart. Other than a few colicky months as a newborn, and his inability to sleep through the night for his first two years, we had absolutely no concerns about W. He was a fun, sweet, happy boy. How could a child who was reading and writing words before his fourth birthday have developmental problems? My husband and I never suspected a thing.

Once W began preschool this past fall when he was 4 ½, it became quickly apparent that he was having trouble in that setting, particularly in his interactions with other children. A special educator observed him in the classroom and told us that W’s social behavior was “atypical” for children his age, and recommended that we have him evaluated by the Child Development Clinic. W was diagnosed with an autism spectrum disorder this February, days before his 5th birthday.

Once we received W’s diagnosis, I realized that autism is the key to understanding not only his challenges, but also many of his strengths and delightful quirks. Most of young children develop social skills intuitively by watching others. W is going to need to be explicitly taught these skills; this is why he didn’t understand how to behave toward the other kids at preschool. Some social situations and settings seem to make him anxious, so he fixates on people and special interests to feel more secure. W does not have any speech delays, but he does have communication problems. While he could talk all day about the solar system, he struggles with two-way conversations. He takes language literally: Once he couldn’t stop laughing at a line in a story about a girl who was “glued to her seat;” W was obviously picturing a child literally stuck in her chair with Elmer’s glue and the image cracked him up.

Autism is not just a disability for W, but it’s also the source of some of his amazing gifts. Autism has given W the tendency to fixate on special interests and an ability for intense focus on those areas. Over the past couple years, W has obsessed over the alphabet, pumpkins, flags, trains, penguins, chess, guitars, power lines, numbers, planets, and various tv characters. Yes, I do see now that a fixation with power lines is a little unusual for a preschooler, but W’s fascination with academic areas like math, reading, and writing spurred him to acquire a lot of skills in a very short period of time. He knows as much as he does about the planets because he will study them at length and is passionate about learning.

Many autistic people are also visual thinkers, and W demonstrates an amazing artistic ability and perspective. He doesn’t yet have the fine motor skills to turn on that tricky faucet at preschool, but he is able to draw three-dimensional objects and intricately detailed pictures. W is also starting to work through some of his fears and negative emotions by creating art. But W is a perfectionist about drawing and creating, and he’ll sometimes crumple up pictures that fall short of the images he sees in his mind.

For W, autism is a difference, not a disability or a disorder. If he didn’t have autism, he wouldn’t have the same spark and creativity that make him an amazing kid. Like all of us, there are things W is very good at and other areas where he struggles. He has a long road ahead to learn how to better understand and navigate a social world that is like a foreign culture to him. My goal is not to change him into someone he’s not, but to help him learn and grow enough that the challenges he has from autism don’t prevent him from realizing the talents and unique perspective that autism has also given him.

This is Autism

Originally published as part of the This is Autism Flash Blog, November 18, 2013.

My son makes me see the world differently, and every single day I am thankful for his perspective.

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He draws like no five year old I’ve ever met. Three dimensional objects, landscapes with amazing perspective (“Mom, these streetlights are smaller because they are far away”), complicated contraptions with gears and pulleys and even elephants. He draws for hours most days and goes through stacks and stacks of paper (of course, he never colors on the back of the page). I wonder what he could draw if he had stronger fine motor skills; he is only now learning how to button his shirts.

This is autism.

He has an astounding visual memory. He has started identifying picture books by the style of the artist. “Mom, is this book by the author of the one where the man rode the bike all over the country?” Even when it’s been several months since we’ve read whatever book, he’s always been correct. One of his preschool special educators thought it was hilarious when he asked these questions about the social stories she wrote for him (“Is this by the same author as Using the Toilet?”). He remembers the visual appearance of power substations on roads we we rarely take. He spies every power line or cell phone tower we drive past; they are often his favorite memories of any trip. And now I see the power lines differently, too, because of him.

This is autism.

He has many struggles, but our life is not defined by his struggles. He needs help because he has amazing potential (like all autistic children!), not because he is lost. Our love leaves no room for despair or fear.

A Kindergartener’s Short Definition of “Autistic”

Originally published as part of the Autism Positivity Flash Blog 2014.

My six-year-old son, Will, had been very excited about his new Lego minifigure that he named Max. One day, when I picked him up from school, his aide told me that Will had been playing with Max and calling him “auto-tistic.” Even with his adorable mispronunciation, we could guess that Will was trying to say “autistic.”

I’ve talked to Will about autism, but I’ve never been sure how much he understands. He knows he is autistic and he has heard me mention other autistic people as well. But I had never heard him talk about anyone being autistic before. This was something new.

I asked him, “Buddy, what do you mean when you say ‘auto-tistic?’”

And Will replied, “Fantastic.”

Welcome to my blog

This blog is a place where one bored housewife can write about her amazing kids, a positive perspective on autism acceptance, and whatever else catches my fancy. To start with, please read my FAQ. I will also be adding a few things I’ve written and published elsewhere, and then move on to more original content. I hope you’ll keep reading!