Monthly Archives: April 2012

Looking for The Secret Garden in special education

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Looking for The Secret Garden in special education

When we  first imagine a new baby, we dream of a happy family life, full of friends and laughter. We look forward to cheering our children on as they grow and achieve.   We don’t look forward to our children spending an isolated childhood in a segregated special education classroom.  But as we come to terms with a child’s disability, we hope that somehow we can find communities that love and accept our children.

The recent viral video by father Stuart Chaifetz reveals an ugly side of special education.   Mystified by behavior changes in his usually happy child with autism,   Mr. Chaifetz sent his son to school with a tape recorder in his pocket.  The YouTube video contains audio clips of school staff  telling Akian to “knock it off” “shut your mouth” and “shut up you bastard”.    When Akian asks for reassurance and is laughed at, he began screaming.  Mr. Chaifetz describes a ½ hour long tantrum which followed, in which Akian knocked over chairs and hit teachers.  The 4 million views of this video suggest that average folks find this tape shocking.

I wish I was shocked to hear this story, but I’ve heard and seen too much in 16 years raising a child with autism, and 10 years working with kids with autism. I have met many adults who cannot find a place in their hearts for children with autism.  Our kids don’t always respond to people who try to be friendly, even  by smiling or making eye contact.  Whether kids are verbal or non-verbal, they lack basic people skills to connect with people.  They have annoying personal habits like picking noses, and wiping mucous and spit in places they don’t belong. Their faces, hands and clothes are often smeared with remains of recent meals. Children with autism move in erratic, compulsive ways.   Kids all over the autism spectrum know when the adults they interact with dislike them, although they usually don’t understand why.  Akian had no way to know what “bastard” meant, but he understood the tone which said that he was unloved and unacceptable.

Parents of kids with autism know how people react when their child behaves oddly in public, perhaps making strange noises and strange movements. We are wounded by the stares and outright questions, and this becomes a barrier to bringing the child to the playground,  grocery store, and to church. Parents yearn for a safe place where our children can play and learn and be accepted.

I’ve heard a teacher say that a child with autism just “didn’t belong” in her mainstream classroom, and I’ve battled with teachers who wanted to exclude  children with autism  from field trips for forgetting one too many homework assignments. I’ve heard about a principal berating a child with autism who made mistakes in the lunchroom, and seen kids with autism excluded from outdoor recess. I’ve seen kids restrained and secluded in time out rooms. I’ve heard many teachers ranting about parents and blaming them for the child’s behavior at school.   I’ve also seen teachers who care go the extra mile to include kids with autism in marching band and musical plays and who find a way to make things work.  I’ve been in  schools that include non-verbal kids with autism in mainstream classrooms, because it is the right thing to do.

Imagine being a child with autism:   you are the focus of the energy of so many loving adults who are trying to change you.  Your basic self is not acceptable, and needs fixing.  Imagine the perseverance needed to tolerate 500 repetitions needed to learn how to roll a  ball, or to learn to point to a picture of an elephant . To tolerate having your behavior corrected, again, and again.

Pennsylvania has outlawed the use of prone restraints, possibly due to deaths of children, but this technique is still used in many states such as Minnesota.  School personnel working with aggressive children usually   receive training in safe crisis management which often including how to restrain safely.

Many idealistic young people want to work with special kids, but it is hard work, and sometimes boring and frustrating. Kids and parents are not always grateful, and when kids have increasing problem behaviors, it’s easier to blame the home environment rather than analyze one’s own actions. School staff need to follow through with mountains of small details like collecting data and following behavior plans, and must stay positive throughout contentious IEP meetings with argumentative parents.  In the video, Akian’s dad implies that an Functional Behavior Assessment  was done by a behaviorist and that a behavior plan was created.  One assumes that the school staff received training during this process, but that these adults weren’t motivated to follow through with what they had learned.

Rifton Chair

Early in my experience as an “Autism Professional”  I visited a school where many children were restrained in Rifton chairs for a good portion of the day.  Staff wore black armguards to protect their arms from scratches and bites.   I watched staff move two semi-circular tables around a child who was attempting to attack them.  At this school, the teachers maintained quiet patience, despite reliance on antiquated methods of handling problem behaviors.  I have seen many teachers with arms scarred by the fingernails of students with autism, who maintain a love for their students. Good quality behavioral intervention can sharply reduce high rates of problem behaviors,  making the use of mechanical and physical restraints unnecessary.  Ugly scenes of aggression and restraints motivated me to learn  the skills needed to minimize physical control of kids, so we can all avoid the scars.

Mary and Dickon push Colin’s wheelchair into the secret garden, where he gains strength and secretly re-learns to walk .

One of my favorite childhood books is The Secret Garden by Frances Hodgson Burnett.  Mary Lennox is a spoiled and sickly young British girl orphaned in colonial India who returns to England to live on the estate of her bitter widowed uncle.  Mary, her cousin Colin, and her uncle regain health through the magic of growing flowers, animals,  and fresh air in the garden.

Heidi introduces Clara to her friendly mountain goats

The book Heidi follows a similar theme, as the invalid Clara is healed by fresh mountain air, goat’s milk, and the companionship of friends on a visit to the Swiss Alps. In these books, adults are not truly evil, but tend to stifle healthy growth through their anxious attentiveness to illness. Mary, Colin, and Clara have no  real  disabilities or illnesses. Out in nature and away from adults,  the  children challenge each other, and  learn to run and play and help each other heal.

These powerful stories of healing feed my attraction to animal rescue and farm life.  I don’t trust that people will be able to be kind, patient or including of speical children, so I gravitate to the acceptance of baby animals. Like many parents, I yearn  for a positive nurturing environment, where all  children  can experience life without criticism and negativity.

Annie, a Good Shepherd resident with Spina Bifida, painting the barn at Flint Hill Farm. She says that people without the use of their legs can find plenty of  work to do on the farm!

Last weekend at the farm, I heard a mother scolding her son “What are you doing, I told you to wash your hands, what are you, some kind of idiot, get going, wash them now…..”  I was leading some disabled adults around the corner, and I paused at hearing the loud, ugly tone.   I casually asked them to excuse us to make room for the wheelchair to pass by, hoping that might nudge them into some self-restraint.

Later I saw a mom with a son with Down syndrome, struggling to convince him to stop putting his hands in his mouth after interacting with goats.  She didn’t raise her voice, although she was clearly stressed.  I approached, wanting to distract him by letting him hold a chicken egg I’d just collected, and attempted to reassure the mom that it didn’t matter if the egg broke. Later, I realized that  she probably feared contamination from the egg, as well. I was trying to distract him from putting his hands in his mouth in an accepting and positive way…..but perhaps I would  have been more help by finding the hand sanitizer.

The contrast of the two situations stayed with me: the use of “idiot” as an insult to the son in the first, the self-conscious physical struggle of the second. Both moms were so fearful of contamination after contact with animals.  I was sad that the worry created by dirt and germs blocked joy of  contact with the natural world.  It is certainly simplistic to hope that children, learning together about growing things, could somehow heal and grow straight and strong.

Teenagers feeding a baby calf

  Parents of children with autism, like Mary’s uncle in the Secret Garden, have the potential to become bitter with grief.   There is so much anger and pain in Mr. Chaifetz’s rant against his son’s cruel teachers.  However, in a follow-up video, his voice is more hopeful when he speaks directly to his listeners and thanks them for their support and stories.  In this fleeting moment of public attention, there is hope that people  have gained a glimmer of understanding of what it might be like to be a powerless child with autism.

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Trendz”R”us

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Harry, Louis, Niall, Liam and Zayn formed the group One Direction and came in 3rd in  Britain’s The X factor. The screaming girl fans remind me of the Beatles US tour in 1964. Their current US tour is sold out,  and tickets for shows in the summer 2013 tour about to go on sale.
Current album: Up All Night
 Hot song: What Makes you Beautiful

My posts have been pretty serious so far – so I thought I’d go a little lighter this time around.  Here’s the latest info on what’s “in” for kids,  including One Direction,  Pottermore,  Skylanders, Draw Something, Pawn Stars, Gotye, Hunger Games, My Little Pony Wedding, and Lego Mini-figures. Typical kids have radars for  “what’s in”: they  don’t need parents to  to help them out with trends.  But our kids with autism be stuck in their own intense interests and may be less aware of what kids their age are liking.

Crossing the Vassar quad late on Saturday night in 1980, I froze when a student greeted me saying “Whip it”.  I think the correct reply was “Whip it good”.

I haven’t always been very aware of pop culture, and I’m not a big fan of Buy Me That behavior from kids.  Parents dealing with autism have enough financial challenges without having to buy every new toy, electronic gadget, and game system in the store.  I am not suggesting that we should encourage our kids to engage in mindless consumption: we hope  that they will be able to think critically about the culture of materialism. But before developing critical thinking, kids with autism need to learn basic conversational skills.  We know popular culture impacts our kids: Barney, Elmo, and Dora are the first words of many children with autism.  Visual images and music are highly motivating for  kids with autism, so why do we abandon them when it comes to teaching conversation and social skills?  Less verbal kids who are not ready for conversation skills may have more social opportunities when they can share excitement about current music and shows.

Parents of children with autism don’t have time to research current trends.   Here’s the latest trends that I’ve been able to dig out.  I’ve skipped over huge categories like sports–and there is still so much more to say about these categories!

Igniter, a rare Skylander character

Elementary Boys :   Pokemon, Legos, Star wars, and Superheroes like Spiderman and Batman,  are beloved by many boys, and a lot of girls  too.  You may not be as familiar with Skylanders:  collectible characters which connect to a Wii platform, the more you collect, the more characters you have to play. The website Pottermore, with new interactive Harry Potter content, opened this week and is struggling to keep up with all  the new member requests.    Ninjagos,  tiny battling Lego figurines on spinners, and  Monsuno, another battling toy, both are linked to TV series and are popular among elementary aged boys.  A 5 Below employee told me that $4 Lego mini-figures are so popular they can’t keep them in stock. She said that more Crazy Bones are sold when they are out of Lego mini-figures.

My Little Pony Royal Wedding airs on Saturday, April 21 at 1pm. Fans of the show known as Bronies are typically male, teenage to young adult, and heterosexual.  Little girls like My Little Pony too.

TV: Victorious, I-Carly, Phineas and Ferb, Monster High and American Idol along gain top TV ratings  for elementary school kids, along with the long-time favorite Spongebob. For kids over twelve (at least!) you can add Glee, Family Guy and the Simpsons. All parents have questions about the appropriate age to phase in more graphic sexual and violent content, with tween 5th, 6th and 7th graders being in the gray area.  These decisions are extremely  important when kids don’t understand the complex social rules regarding what language to be used  in what situation. Either pre-watch shows with questionable content, or at least watch them together so that you can take advantage of teachable moments.   Movies with complex violent content  like the Hunger Games and shows like Glee which introduce teen pregnancy and homosexuality are better waiting until at least middle school. Typical kids are usually aware of what’s popular in the teen demographic, even if they aren’t allowed to watch more mature content. Younger kids can learn about names of characters and basic plot, and can at times participate in a trend through Wii games Glee Karaoke and Just Dance even if they aren’t allowed to watch.  Vampire and witch shows like Vampire Diaries are still in. Younger kids who haven’t watched or read any of the Twilight series will know about Bella, Edward, and Jacob. Big Bang Theory continues to get high ratings, it is especially appropriate for older Aspies who may identify with the quirky nerd ethic of the show.  The Legend of Korra is the sequel to the Avatar, The Last Airbender and is a good bet to be popular among elementary boys. Doc Mcstuffins  is a new favorite for  preschoolers with an appealing theme about a girl who can talk to and heal stuffed animals. Reality shows like Pawn Stars and American Pickers are unexpected favorites of many kids.

An drawing of Peeta from Hunger Games on Draw Something, a popular tablet game. Angry Birds and Fruit Ninja continue to be popular.

Music: Older elementary school kids start to become familiar with many pop singers such as  Kellly Clarskson (Stronger), Katy Perry (Part of Me), Adele (Set Fire to the Rain), Flo rida (Good Feeling), Pitbull, LMFAO, Bruno Mars, Taylor Swift, Lady Gaga, Rihanna, Drake….and we are all anxiously waiting for the release of the music video for Justin Bieber’s Boyfriend. I check Ryan Seacrest’s Top 40 website regularly to keep on top of new groups with unfamiliar names.  Awareness of popular music often starts with preschoolers, who have delighted me with renditions of Rolling in the Deep (Adele), Moves like Jaggar (Maroon 5) , and Dynamite (Taio Cruz).  We are Young by the pop band Fun featuring Janelle Monae will clearly take a permanent place among power anthems. Take advantage of your captive audience during car trips to therapy sessions and tune the radio to popular music.  Selena Gomez is making the transition from tween star on Wizards of Waverly Place to an older teen  demographic, and is taking advantage of all that publicity about her relationship with Justin Bieber.

Videos:    viral videos are always popular, and sometimes there is a particularly hot video, other times I search and just find….puppies and kittens stuck in toilets and young children tripping and falling. The website Know Your Meme can keep you up to date on current viral videos and memes (the terms meme usually refers pictures with varying captions such as  Lolcats).   In searching for one “best” current viral video website, I saw that there were a variety of different lists focusing on misadventures of  animals and children, popular music, commercials, and movies.  Gotye (Go -Tee-Yuh) who performed  on Saturday Night Live last week, could be a rising star or  a one -hit wonder, but his music video is currently hot. His haunting song Somebody I Used to Know was featured on both American Idol and Glee last week.   Older viral videos include bizarre favorites such as Danny after Dentist, Rebecca Black’s Friday, the Bed Intruder song, Shoes, Nyan Cat and Double Rainbow. Because many viral videos have sexual or drug related content or references, you will want to preview videos for tweens.  However, once kids hit high school, if they’re anywhere in earshot of other teens, they’re hearing  constant drug and sex related content, and watching a video together can offer an opportunity to sort out feelings and information on these topics.  Adults may need to intentionally learn about Facebook, as viral videos and internet memes (pictures with humorous captions) are parts of teen culture that are not likely to disappear.

The internet meme: the original lolcat was published in January 2007

“Special Needs” parents may not have contact with parents  who form life-time friendships on the bleachers at Little League while we hang with our autism friends at  Miracle League.  When kids are in special classrooms, we may not meet other parents at Back to School Night, music performances, and birthday parties.  So when we try to strike up a conversation with other parents, they react to our anxious stories about the latest IEP meeting or our visit to the developmental pediatrician as if we were talking about the mating habits of pygmy marmosets.  Talk about movies, music, and sports can fill the awkward conversational divide.  For me, this is a particular issue, as I also work with kids with autism, and the conversation usually sags after “Bless your heart” or “You must be such a special person…..”.

Perhaps the best way to convince you of the importance of teaching kids with autism about popular culture is to invite you to think about the music, movies, and TV of your own childhood and teens. For those who grew up in the 6o’s and 70’s, imagine being unaware of the Beatles, the comic strip Peanuts, Star Wars,  the Brady Bunch,  or peace signs. I love my memories of going to see The Poseidon Adventure and Planet of the Apes with my best friend, and singing all of the verses to American Pie.  I remember where I was when I found out that John Lennon was assassinated. Think about how popular culture played into so many of your childhood memories.  I think we want that  our kids to be  included  in the shared cultural memories of their generation.


The smiley face first appeared in 1963. At it’s peak, the smiley face was on mugs, t-shirts….it was everywhere

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The Bully Project

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Jackie Libby recalls that she and her husband, once found their son Alex passed out in the front yard of their Sioux City home.
“He said some boys were slamming his head into a seat on the bus,” Jackie said. “We thought he made it up.”

I keep seeing commercials for The Bully Project.  So I’m starting to pay attention.  I watched an interview with Alex Libby, one of the 5 kids who were followed for a year in this important documentary. The stories of these kids are heart-breaking, and include two  children who committed suicide after prolonged bullying.

Something about Alex made me watch more carefully — does he have some form of autism? They don’t mention it – but I spot a blue puzzle pin near his  shoulder, and when I look closely his mom is wearing one too.  I check  the promotional website but Alex’s bio doesn’t mention Autism. I wonder why.

Alex Libby and his mom Jackie during a TV interview about the movie release http://thebullyproject.com/indexflash.html

Digging deeper, I find an explanation from the film-maker, Lee Hirsch: “…both Tyler Long and Alex have Asperger’s Syndrome, and we made a conscious decision not to disclose that in the film. We certainly could have, and perhaps it would have been insightful to the audience and we talked about it a lot. Ultimately, we decided that we didn’t want anything to make the audience think, Oh, well, that explains it. Well, of course. We didn’t want anything that anyone could hang onto in that way.”

Wow.   That explains it?  Well of course?   Like, they have Asperger’s syndrome, so of course they’re going to be bullied?

Lee Hirsch, film-maker, hugging Alex

A variety of kids are targeted by bullies, not just kids with autism.  Gay kids are beaten up. Kids with learning disabilities and mental health diagnoses are called names. Kids who are perceived as weak and non-assertive are intimidated.   Kids who are different are at risk of being bullied in so many different ways. But somehow, Alex’s blue puzzle pin reminds me of Katniss’ mockingjay pin in the Hunger Games books: a signal of solidarity from Alex and his mom to those of us affected by autism. A tiny symbol of rebellion from Alex in the middle of a media circus.

Rachel is slushied on Glee, a TV show that uses music and humor to discuss important social issues affecting teens

When people complain that the definition of Autism is “widening” and about “over diagnosis”, I hear them questioning whether kids similar to  Alex should be included in the Autism numbers. People may argue that the articulate and aware Alex doesn’t “really” have autism,  and that he was just another “different”  kid who got beat up on the bus.   In my life, I’ve met so many kids like Alex; kids with high functioning Autism who can manage at school without behavior problems, kids who can do the schoolwork, but just don’t fit in. Kids who have been shuttled for years to different doctors by anxious parents, without a diagnosis or treatment. Kids whose parents, like Alex’s, have more than a little bit of denial about the cruelty of other kids.  Many kids with Asperger’s get diagnosed as late as 6th or even 9th grades, and already have significant depression and anxiety.  These kids don’t need one -on -one assistance at school, and many of them would be mortified to have someone hovering near them all day. But they are at risk from aggressive kids, and need vigilant adults who are willing to intervene. [ Autism Puts Children At Risk for Bullying]

Worry about out-of-control kids underlies decisions parents make about schools for their mainstreamed kids with autism.  As teenagers move through middle school to high school, supervision and monitoring is looser, and possibilities of victimization increase.   Often, parents find alternative solutions, and send vulnerable kids to smaller religious- based schools and charter schools. Many parents don’t take any risks at all and pull out of the game, cyber-schooling at home. They don’t trust that adults within schools will do what is necessary to keep vulnerable kids safe.

The short bus is a target for offensive comments and jokes.

Maybe you think Alex should have been riding on the short bus, where he would have been safe from bullying peers. Maybe you think he should have been home schooled. But shouldn’t Alex be accepted for who he is, and have the independence he has earned? When kids with autism gain independence, parents  worry less about their own child’s behavior, and instead focus on their safety.

Kids like Alex may no longer be diagnosed with autism with the stricter criteria developed for the upcoming revision of the Diagnostic and Statistical Manual. The DSM is the document developed by psychiatrists outlining consistent criteria for diagnosis of mental disorders.   Since  insurance companies are starting to be forced to cover autism, I wonder about their role in tightening up the diagnostic criteria. The new CDC autism numbers, showing that 1 of 88 kids have autism, may still be  just the tip of the iceberg, as  a study by a Yale researcher found autism rates in South Korea are 1 in 38.     1 in 38 could cost a lot of money.

There will always be kids who don’t fit in.  Who don’t wear the right clothes. Who are preoccupied with Pokemon and Star Wars, and who’ve never heard of One Direction or Big Time Rush. Kids who are unaware of the subtle pecking order of kids, and who don’t know the rules of where to sit at lunch or on the bus. Kids who get teased.  Kids who don’t get the rules of the playground games, and who melt down when they lose.  Kids who nobody likes.   Where is the dividing line between the annoying kid, pestering everyone with repeated questions, and the kid with a clinical diagnosis? Which kid deserves insurance reimbursed therapy, and which should be left on his own, to sink or swim?

At this point you may be wondering whether the kids who are bullied are really the ones who need to be changed.  It’s a good question.  Should kids have to change who they are?  Well, no, we should not try to change gay kids, or keep them in the closet. Diversity makes people  interesting.    But we do need to look at the bullying ringleaders, whose unbridled aggression may develop into long-term anti-social behavior.  This is quite different from many kids with autism, who desperately want friends, but just don’t know what they are doing wrong.

Alex Libby, talking about the kids on the bus: “If you say these people  aren’t my friends, then what friends do I have?”

We want our kids with autism to actually have friends.  We want people to like them; we want them to be be included.  In social groups, I don’t use behaviorism to coerce kids to bounce their balls in the same rhythm. And I’m not  looking to transform kids with autism into Popular Kids. But I do want kids with autism to ride the school bus with the other kids without getting beaten up.   Maybe if I do a good job they will just….pass.    Maybe if I teach the right skills, when students are partnered with a child with autism, the other kids won’t roll their eyes or wince, making sidelong glances and exchanging smirks of sympathy. Or maybe typical kids will invite friends with autism to birthday parties because they want to, not because their mom said they must. I try to teach kids skills that will help them survive out there in the real world, such as what clothes and music are in, how to know when someone isn’t interested in what you’re saying, how to be flexible with rules, perspective-taking, and how to tolerate feedback without crying.  I set things up so they can experience the enjoyment of having fun with other kids, and so they will have the motivation to keep trying.   But teaching social skills costs money. Health care dollars.

Alex and Kelby with Victoria Justice

As parents, we want our kids to be accepted and have a couple of friends. We don’t want them to go trick or treating with us when they are 16, or to be alone on their birthdays.  We don’t want them to tolerate cruelty as the only attention they get, and we surely don’t want them to contemplate suicide.  We have to work through our own pain to face the difficult issues: we have to face the pain of seeing our beloved sons and daughters rejected by strangers, and the pain of our own experiences of being left out and getting picked on.  We have to find our voices and speak up, and then we can teach our children to stand up for themselves.

I love hearing your comments and thoughts! You can comment on the blog, on Facebook, or send me your thoughts by e-mail at trebat@ptd.net

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Napoleon Dynamite: a happy ending movie about a picked-on kid who finds a couple of friends

Reaping Day

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Effie reads a name during Reaping Day in the Hunger Games

This past week, everybody’s been talking about  the new CDC Autism statistics and  the movie release of The Hunger Games.

Mother waiting, as her child's name is picked from Effie's glass bowl

The rate of Autism is now 1 in 88 children.  1 in 54 boys,  1 in 252 girls. Families with new babies nervously wait for each developmental milestone, hoping that their child won’t be the one in 88. Anxiety builds to fear when a child isn’t talking by their second birthday.   Think of the mother in the Hunger Games waiting, with hope, despair, and defiance as Effie Trinket gleefully pulls her child’s name out of a glass globe.  Families hope that some other child’s name will be read, and feel relieved and guilty if their child is passed over, at least this time.

There is a lot of discussion about Autism statistics.   Many authorities have said that the rise in Autism is false, that the statistics just reflect a widening of diagnosis.  But, when factors are teased out carefully, as in the California Department of Developmental Services data,  it is clear that a broader diagnosis only accounts for part of the rise in Autism rate.

The dramatic rise in Autism rates is a mystery.    So why aren’t young parents panicking? Why aren’t they demanding answers?  This is a huge epidemic, and yet…….are we allowing ourselves to be snowed by these experts who deny that the epidemic is real?

The Autism crisis has a familiar feel.  I lived in New York City during the peak of the AIDS epidemic.  It was a scary time, and I jumped in as a volunteer caregiver for people dying of AIDS.  I wore my Silence = Death t-shirt to ACT UP rallies to demand speedy treatment trials. People were dying- – fast – – and there was no time to wait for lengthy clinical trials, no time to wait for the political process to creep forward. Do our children have more time to wait?

Act-up protesters staging a Die-in, New York City 1989

During the AIDS crisis, friends and lovers, as well as people with AIDS, took to the streets.  You never knew who would be the next to fall, so there was no point of safety.  Gay men got tested  for HIV every six months, never safe even with condoms. With Autism, expectant parents face their odds,   hoping that their child won’t be that one in 88.  Once children pass the developmental milestones, they are safe from the Autism epidemic, and parents can move on to worry about PTAs and soccer. The names are picked out of the glass globe once in a lifetime, so  parents can be confident that they have been favored, and their child has been spared.

When I hear prominent authorities claim that there is no real rise in Autism, I wonder if parents are being deliberately confused, to stop us from  demanding answers.  If there is no rise in Autism, we don’t have to look for a new cause.  If genetics are the primary cause, then no action needs to be taken, because there is no epidemic. If the dramatic rise is real, that means there is an environmental cause for Autism.    That means there is someone to blame, but also that there is hope for change.

In the Hunger Games, President Snow said that “a lot of hope is dangerous”. What did he mean?   If  people have hope, they may become unreasonable, and demand  change. In our case, they might demand effective treatment for their children.  If parents of young children with autism knew that intensive early treatment results in 50% of children being at or  near age level by kindergarten, would they  demand insurance companies pay for treatments such as Applied Behavior Analysis? Why do parents accept that insurance doesn’t cover scientifically validated treatment for autism, when it covers treatment for other childhood diseases?    Because it’s still a mental health disorder, rather than medical?

I don’t know what percentage of children get adequate intensive treatment. Mostly they get a little of this and a little of that.   My own daughter had 40 hours a week of Applied Behavior Analysis from the age of 4, and we were lucky to be living in the State of Pennsylvania, which paid for it all. She started late: these days,  children can be diagnosed between 1 and 2 years old, and start treatment earlier. Pennsylvania still pays for early Autism treatment when many states pay for much less. There isn’t enough money to go around, and Pennsylvania is gradually and deliberately whittling away at the treatment they pay for.   I hope it’s enough.People say my daughter was lucky as she was born before the flood of new Autism cases.    But lucky?  Her name was drawn out of the Autism globe, too.   But,  she started intervention in time, and she is part of the lucky 50%. My daughter is attending a small charter high school, in regular classes.

Robot child

When people say that Applied Behavior Analysis will turn children into robots,  I swallow my rage.   I’ve seen what happens when kids don’t have high quality intervention, so  becoming a robot seems a minor risk to me. Again, the robot myth seems designed to throw parents off course. Autistic kids without quality intervention don’t do well.  I’ve seen countless children punished, restrained, and trapped by inability to communicate and extreme problem behaviors.  Children with bodies scarred from self-injurious behaviors. Parents with bruises.  Brothers and sisters who have to hide in the basement during tantrums, and who never have friends over. Families who are lonely and isolated and exhausted, getting up everyday to start the battle one more time.  I feel relieved, and a little guilty that my daughter has done well, as there are so many families and children still fighting for their lives in the arena.

Who is the one fighting for survival?  Is is me, or is it my child?   Up until now it has been me, but now I am waiting for her to take over.

ABA did not turn my daughter into a robot: she is a live girl with a heart, and a brain, and courage, who dreams of traveling to France, and going to college as far away as we will allow.  I am waiting for her to start spinning, a girl on fire.

Learning to paddle solo

The Autism Games: may the odds be ever in your favor…….