A Field Trip through Autismland

When my daughter was diagnosed with autism, someone gave me the essay “Welcome to Holland.  Some people believe that this essay about raising a child with a disability is comforting. I found it annoying.  The author, Emily Perl Kingsley, compares raising a child with a disability to preparing for a trip to Italy, and getting off the plane and finding yourself in Holland. I know that the author had good intentions: she didn’t want people to be so consumed by their child’s disability that they miss the wonderful things about their child. But you just can’t hear that message in the early stages of angry, raging grief.

When I read the essay after my daughter was diagnosed with autism,   I reacted to the part where she said: “they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease.  It’s just a different place.”  To me, autism has not been just a different place. The first years were terrifying and lonely.

Welcome to  Autismland.                        Toto,  we’re not in Kansas anymore.

The first years of autism are nothing like Holland, with beautiful tulips and windmills and delicious cheese.  When parents step off the airplane of diagnosis into Autismland, it looks pretty barren.  Many families who have a child with autism feel  isolated and separated from the communities of school, church, and recreation. Even with an accepting community, how many would return after their child had a screaming, flailing tantrum? Or even if he just loudly quotes Spongebob in a somber moment?   Parents of typical kids get the group tour with jolly companions, drinking and laughing as they journey from kindergarten registration to college application.  Parents of kids with autism are on their own in a strange inhospitable country.  With a diagnosis of autism,  it wasn’t just about whether my child would talk, but about whether she would have a future:  would she ever be able to work, get married or have a family?  For a parent, this treeless, lonely country looks nothing like Amsterdam or Rome.

Even for families of high functioning kids who learn side -by-side with typical children in regular education, there is a huge chasm of separation. Once when we were preparing an after-school activity, one mom said to me,”I don’t know what I’d do if I had a child like yours”. Her statement has bounced around in my head for 8 years, and I remember it every time I see her jogging down the road. She was commenting on the deep canyon  that separates her world and mine. I could see her micro-expressions of unconscious disgust and superiority,  that’s what stays with me.

Some of the separation from the mainstream parents reflects my own social awkwardness….even before autism, I never knew how to do the normal mom talk about Longenberger baskets or jewelry parties.  Some autism parents  have the knack of making others feel at ease and fitting in.   For the rest of us,  school events are particularly  stressful.  Autism parents go on more field trips than the other parents, and this time of year I hear the field trip stories from parents every day.  The brave parents of kids with autism tell me about the pain of watching their children who can’t read the social cues.  They tell me about watching when no one chooses their child to be a partner on the bus.  They see the other parents watching the lunch drama, when all of the kids choose where to sit. The other parents don’t want their child to be forced to sit next to ours, and wish we would accept sitting at the unpopular table. During field trips and class parties,  parents are finally granted their foolish wish to be a fly on the school walls– and they see the vast ocean that their child with autism needs to cross to be accepted.

I spent the elementary years helping out in Girl Scouts, backstage, and on field trips.  It would have been easier if I had been one of the moms who was naturally good at the PTA thing, always chipping in to help with the endless fundraisers.  Maybe that would have given me some social capital.  In those years, I thought I had some sort of special dispensation for having a child with a disability, and I just didn’t realize that I didn’t get a free pass at all — rather, I needed to do twice as much, while not talking too much about my other life of therapies and supplements.   Within our own networks, autism parents overlook forgotten phone messages and dropped balls, but the rest of the world is not so forgiving.

When I called up the staff of Girl Scouts of Eastern Pennsylvania to ask whether my daughter with autism could be a program aide helping younger children, they said “Sounds great! We have a staff member with Asperger’s who just did a training for us !” Juliette Low, the founder of Girl Scouts, was deaf.

Participating in activities required all of my acting skills, putting on a game face to cover up my intense anxiety. Like the time that an elderly Girl Scout came and showed the Brownie troop her ancient collection of historical uniforms.  I walked my fidgety child around the perimeter of the room, around and around, through the endless presentation, knowing that all the moms were watching us. The very first girl Scout meeting,   I remember my daughter standing on the tables and lying on the floor.  I needed to gather my courage before every meeting. We went on overnights, camping in tents, on a battleship, in a church basement, at the Game Preserve.   The popular clique negotiated who slept next to who, and ran off to the bathroom together to gossip. I comforted the crying girls after lights out.  Girls Scout rules don’t allow adults to sleep in the same platform tent with girls.  Would the lantern outside my door stay lit all night? Would the girls wake up if their tent-mate had to use the latrine? Would anyone get lost in the woods in the dark? I slept fitfully, listening for every noise.   I came home from each experience exhausted from managing other children’s needs while trying as best I could to help my own  kid look normal.  Or less different.

We moved on to other activities in middle school.   We did High School Musical and Aladdin. We went on an overnight band trip .   I kept supporting backstage, finding missing props, and giving cues for entrances.   It was fun,  but still grueling.  The  mommy cliques dwindled as the scornful glances of the  young teenagers began to emerge. For many families with autism, puberty means going deeper into quicksand.    But for us, it was time to start stepping back.

This year in high school, there was an overnight trip with school: 3 long days.   None of the parents went on the trip.  I didn’t see whether anyone sat with her on the bus, but I saw the exuberant Facebook message she sent on her Kindle from the bus: “On my way to Boston, yay!”  I only texted the teacher for reassurance once, but I was still drained by the time we picked her up. The teachers said she had fun, but she doesn’t believe in sharing unnecessary information with adults, so we didn’t hear much detail.

Making the trees dance in The Adventurous Girl, by Ariel Camacho

Stepping back takes different forms. The last three years we’ve been in the Young Playwright’s Festival with Touchstone Theatre. The first year I was a helper, but last year I took the plunge and I auditioned.  I was no longer a spectator and observer, there to give direction to my child –this time I got on stage too.  I was too busy with my own role as a spinning wall and dancing tree  to worry about anyone else.  This year we were mourners in The Sad Story of Mrs. Donut Person, by Biance Acosta.  Making people laugh is great fun.

It’s been a long journey, and as I look back, I am amazed to see the rough terrain that we crossed.  The journey was not what I expected, but not the worst that I feared.  There’s still a ways to go, but now I can stop once in a while to find a flower sprouting up between the rocks.

We can only be said to be alive in those moments when our hearts are conscious of our treasures.  ~Thornton Wilder

Teaching Slang and Idioms

Swag means style, or confidence in how you carry yourself

Language development goes beyond learning names of objects and grammar to learning slang and idiomatic expressions. It is essential for older children and teens with autism to have a good handle on how peers are using language. Parents may have mixed feelings about teaching slang as it is often associated with non-standard words referring to  body parts and sexuality.  It  feels wrong for adults to intentionally teach about words we really don’t want  kids to use, but children with autism often benefit from direct teaching about all forms of non-literal language.  Kids with ASD can particularly get in trouble with sexually tinged language, for example accidentally using a common word that has multiple meanings.  Peers may find ways to use this lack of knowledge to tease a child with a disability so that others in the group will laugh at the child’s cluelessness.

When kids with autism are small, we first struggle with teaching basic naming. We move from naming to generalization: it’s not enough to name one picture of a cow, kids also need to recognize a cow with different colors and patterns, in cartoons and photos, as well as more abstract toy cows.    Language learning starts out on this concrete level.  Often, speech therapists are “done” teaching language when a child has a reasonable vocabulary and grammar as measured by tests of expressive language. When parents express concerns that a child is not understanding and using speech like his peers, speech therapists may send home a worksheet with 20 examples of non-literal language and idioms, but this is  just a drop in the bucket in teaching idioms as there are thousands of such expressions in daily use.

Higher level academic work is dependent on understanding of abstract language, and reading such literary classics as Shakespeare requires the ability to decipher new meanings. Students with autism will need assistance in progressing  from concrete to more abstract language if they are mainstreamed academically. Parents can support learning about non-literal language by continuing to read aloud with children even after they are reading on their own and discussing meanings of words, expressions, and social inferences. Popular music, TV shows, movies, and cartoons are also rich sources of language that  parents can use children to take advantage of “teachable moments” with children. It can be fun to teach through the use of pictures.  For several years, I put an idiom of the day on my daughter’s laptop, so that she’d see it when she logged on.

Cry your eyes out.  Lists of idioms, as well as funny idiom pictures drawn by children can be found at Idioms by Kids

Selena Gomez crying her  eyes out. Some children do better with pictures of what an idiom really means, rather than humorous drawings of  literal interpretations.

Typical children do not need to be  taught basic idioms, but a child with autism ,may not pick up the meaning in context.  In later  elementary school, idioms may be taught as part of language arts, but children with autism need instruction early, in order to follow basic directions given by adults.  A child may look like a deer in the headlights when you tell him to “hand it over” or to give you a “hand”.  Sometimes an adult will give directives using indirect or idiomatic language, and become upset when a child with autism appears to be non-compliant.   But if you say “Would you mind backing up a little?”,  children with autism  may get stuck on  “Would you mind?”, because they don’t understand that they need to comply even if they DO mind.  They may not understand the variety of meanings of the  word “back”: back up, back down, get your back up, get off my back, behind her back. You can find long lists of these expressions at websites, such as Free Language Stuff. I use this phrases intentionally with children with autism, and provide them with an immediate translation. For example, I might tell a child to “cut it out” and follow-up saying  “that means I want you to stop”.

My daughter, as a toddler, often started screaming if someone offered her a “diet soda” as she thought it would make her “die”

In later elementary school,  no later than 5th grade, it is time to  get  familiar with slang expressions. Slang includes new uses of existing words, as well as invented words. Some invented words are based on abbreviations.  This is more and more common as abbreviations emerge from  “text talk”.  Some text talk is only used during writing /texting (such as CUL8R) but other text talk is increasingly incorporated into conversation such as  OMG, TMI,  BFF, BF/GF, yolo ( you only live once ) and IDK ( I don’t know). Kids don’t need to be able to use these expressions, but it helps if they understand what they mean.

It’s fun to introduce slang in current music, and you can find less sexy versions  of music videos appropriate  for younger kids, such as the Chipette versions of popular songs. Here is a fun Chipettes mash-up of two popular songs: Something To Dance For / TTYLXOX “MashUp” (The Chipettes Version) – YouTube.

Randy Jackson from American Idol is known for his use of expressions such as “Yo Dawg” “you can really sing the phone book” (means you can sing anything) and “that was HOT” (awesome or sexy). Incorrect usage of phrases such as ” he can really blow” (in this context, meaning sing) can lead to trouble for kids with high functioning autism.

Some abbreviations, such as LMFAO, BFD, and WTF  are substitutions for “bad” language. If you don’t know what these mean,  you can look them up on Urban dictionary.com .   It is important to teach kids that although abbreviations and substitutions of bad language are slightly less offensive, using them with teachers and the principal is disrespectful. Many children with autism appear to be disrespectful because they miss the social context of language. We need to  teach them many unwritten rules, for example,  that adults can use command language with children, but school age children are rude when they use command language with adults. Imagine a child with Asperger’s telling the principal to “move it”, or worse, “move your butt”.  When a child is scolded for being rude, it just confuses them, as they may be repeating words they heard on the playground, or that adults used with them.

Kids across the autism spectrum can pick up bad language they hear at school or at home, but explanations should be tailored to cognitive level of the child. Younger children and children with cognitive delays may hear a bad word they don’t understand and repeat it; the heightened attention that follows makes it more likely that a child will repeat the word just for the drama. The safest approach is for adults to use minimal attention and emotion when addressing use of “bad words”.   For children who enjoy drama sometimes it’s possible to teach funny or cute popular expressions, so that they do get the attention they are craving. It might be cute if a child says “Oh….sugar-monkey”  or “aye caramba” as substitutes.

Many  kids with Asperger syndrome think about rules as black and white with no gray area, and so they  may be stressed when peers begin to experiment with language. For children who are strict rule followers, you can  introduce and explain all forms of bad language before they start hearing it at school and seeing it on bathroom walls.   Having a talk about the meaning and usage of words is not likely to lead to these  children using the words.  On the other hand, when an adult role model screams ” !?!@#!” every time something goes wrong, what happens next is predictable.

Bella Thorne and Zendaya are current  stars on the Disney channel. Lyrics of Bella Thornes: TTYLXOX: “Be be be my BFF
Cause IDK what’s coming next
And I’ll be LMHO with the rest
So TTYLXOX”

Keep in mind that usage rules for slang are very specific, and include intonation and body language. Teaching about social context is critical:  kid talk changes dramatically depending on whether adults are present.  Typical children learn that they can say things to a young adult babysitter that they can’t say to their grandmother, but we need to teach this to child with autism.

Moving on to actual slang: The terms sick, mad, dope, fly,  and epic are all positive descriptor words.  Sick implies over-the-top insanely fantastic. Mad seems to be used to replace “a lot of ” as in,”I have mad homework “. It can also mean impressive as in “he has mad skills”.   Epic is a superlative: the term epic fail is what happens when you lose a video game, or make a giant mistake.   Calling someone a tool, or saying something is whack are both negative.  Both have multiple slang meanings – if you don’t know the meanings, look them up!  Other terms: crib (home), bounce  (leave; “let’s bounce” means let’s go), and  ride (car, as in the show “Pimp my Ride”). Tight can mean either “close” as in “we’re tight”,  uptight and closed up  as in ” my mom’s tight”, or stylish as in “those is some tight kicks”.  Swag is a positive word meaning stylish. Saying that someone “killed it” means they did a great job, not that they committed a crime.

Another fun new term is Noob which is short for Newbie, or newcomer, which emerged from multiplayer online games, referring to someone who doesn’t know the social rules of the setting/game. Bromance is a non-sexual closeness between males. A frenemy is someone who you seem to be  friends with, but who you don’t really trust.  Some terms, such as Homie, home skillet, Shortie (or Shawtie) and props have urban origins. Shawtie is an affectionate term for an attractive female, but can also be used for a friend. Giving someone props means to give respect to someone. Junk is a current word referring to private parts on a male, or  referring to a female’s “booty”.

Some teens with autism may start to pick up on new slang  on their own, but it helps to have on-going open discussion of language with open-minded adults to clarify appropriate usage. Adults need to think carefully about how to teach language use, as children who behave like a parent  Mini-Me will have reduced social acceptance.

Sheldon Cooper in the TV sitcom Big Bang Theory has a literal understanding of language despite a genius IQ. The very popular show revolves around Sheldon’s constant social misunderstandings. I feel a little queasy about laughing at him.

Props to my friend and colleague Virginia for helping me with this post,  she is mad fly!

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.

Trendz”R”us

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

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

On leopard print bras and girls with autism

A friend  has been giving us bags of her daughter’s clothing for many years.   The daughter is a cheerleader,  a dancer, a black belt in Karate, a popular girl. They give us Hollister bags packed with neatly folded t-shirts,  denim skirts with sparkly embroidery,  and camis of every color and style.  Lately we’ve been reaching in those bags and pulling out lacy bras, animal prints……..items that I wouldn’t think to buy for my daughter with autism.

As early as  fourth and fifth grade, it’s easy to see which girls are going to be popular: the ones with clothes from the trendy stores, the ones who have good haircuts, just right clothes. How do they know what’s in, and what looks good?

The bags of clothing inform me and challenge me.  Typical teen girls spend a lot of time trying and retrying different combinations of clothing. Figuring out new looks and new identities. Trying desperately to be comfortable in changed bodies. As I pull the items out of the bags,  I think:  how do I know which cami goes under which shirt? When is it okay to show straps?   Will these shorts cover the important parts? Teen girls beg their moms to go shopping, and hide clothes and make-up that don’t pass scrutiny so they can  change  when they are out of Mom’s sight.

How many times an hour does a typical girl adjust her clothing? How many times a day does she check her hair in the mirror? Unconsciously check her hair with her hand?  How do I get my daughter with autism to check all of this when she is away from me?  Which fashions will hold up with the least amount of tugging?

I remember when I was in middle school, banished to sitting on the  hallway floor for passing notes in math class, I was approached by an older boy who reached out his hand  to touch my breast.  I told him to leave me alone.  What would a girl with ASD do?   Should we keep our girls covered safely with loose hoodies,  dress unattractively, to avoid unwanted attention? Will that even make a difference? Rates of sexual assault for girls and women with disabilities are 2 times the rates of  those without disabilities.

I look at styles in stores and on the internet.  I think about what styles might work for my daughter, or other girls with autism.  I look at what girls are wearing : the teens on Facebook  pose provocatively  in strapless dresses, leaning forward to allow a peek.

I look at celebrity role models and I get confused. I think about Selena Gomez, growing from Barney to Disney to Justin Bieber. Miley Cyrus, moving from Hannah Montana to pole dancing.  Pretty Little Liars? Gossip Girls? Rihanna?   Down the rabbit hole we fall….but it changes the story if mom is right next to  Alice, pointing out the just-right bottle.

So we want our girls to look cute, and “in” and socially acceptable. We want them to explore and find their own identities. But…. what if they are stuck in Pokemon world? Do we push them to learn about sexy?   We want them to have friends…….but do the other girls have to be so ….mature? How can our daughters have friends, when the other girls are interested in romance and Vampires, and ours are talking non-stop about Phineas and Ferb?

There are so many questions. Do we bring our girls to Victoria’s Secret and encourage them to replace sports bras with  push up bras? Do we even tell them about thongs?

Schools with uniforms are a huge relief – although it’s possible to look attractive in a polo and khakis, there are no cut off sweatpants with “hottie” blazing across the behind. Maybe there is some middle ground.  We can steer our girls to the fashionable comfort of yoga pants if they hate  jeans.    Tankinis cover better than bikinis. In social skills group, we play clothing bingo to learn all of the words: sequin, spaghetti strap, jeggings, poncho.  I leave the Hollister bag at home, and pull the items out of a laundry basket.  The girls are scared by lacy lingerie, but find the animal prints intriguing.

Formation of an identity separate from the mother is a  critical development stage  for a young woman.  Do we allow our  teenage girls with autism to stay safe in their obsessions with horses and princesses?   How do we keep them safe, but push them to explore a whole new world?

I almost wish I hadn’t gone down that rabbit-hole-and yet-and yet-it’s rather curious, you know, this sort of life! I do wonder what can have happened to me!

(Lewis Caroll, Alice’s Adventures in Wonderland)

Goats, food, and picky eaters

My guess is that people think that my interest in goats is pretty odd.  So what’s up with the goats?

We spent some time on Saturday hanging out with the 24 baby goats that were born this week.   In the nursery, there were babies just born a few hours before — some frolicking and wagging their tails, nursing — others sleeping in the hay in their adorable little goat sweaters, their bellies still dripping from their just detached umbilical cords, the mommy goat licking at the placenta over in the corner…..

These days so much learning is sanitized,  using only pictures and words.   Sights and sounds, but no smells, tastes, or touches.  No germs or dirt or blood. No soft fur or nuzzling noses.

Our relation to food is distant too. I’ve seen many children with diets consisting  of  Tyson Chicken Nuggets, McDonald’s French Fries, Oreo Cookies and milk. The more adventurous might eat  Kraft Macaroni and Cheese or Skittles. Many children will only eat pre-packaged pancakes and waffles, refusing the ones lovingly made by mom.

All of this uniformly colored and shaped food is different from picking raspberries and sugar snap peas out of your backyard.  It feels odd drinking milk that came from your friend Daisy’s udders, or eating an egg that you gathered and washed.

Picky eating in young children is complicated.  Careful detective work can uncover an underlying cause:  delayed oral motor skills, allergies, reflux, constipation,  strong reactions to sensory experiences, and the drive for sameness in autism can impact eating.  All of these need treatment before you will see any improvement in eating. Children develop aversive reactions, gagging, choking and vomiting if forced to taste or smell certain foods. When a child is backed into a corner over a food, he will ramp up behaviorally.  Children scream, cry,  clamp their mouths shut, turn their heads, and throw food in order to defend themselves.  Parents feel guilty and stressed, and doctors and grandparents give useless advice like “he’ll eat when he’s hungry”.  Parents dread the nightly battle, and see their failure to create a pleasant family dinner as leading to a life of ill health, obesity, and criminality for their children.

Once the underlying problems are addressed, I have been surprised to see how quickly the negative patterns can be reversed with simple food activities.  No forcing, no nagging, no crying.   Just some fun cutting, peeling, grating, crushing, sorting, mixing, pouring…..with no pressure at all to eat. This is key:   it has to be fun, and you can’t have a secret agenda of getting the child to taste the food. Just enjoy the moment and the time together.   You don’t need to actually “make” something, as that will limit your imagination as to what can be done with the green pepper in front of you. See if you can drink water through a rigatoni noodle.  Trying cutting up a potato with a plastic knife, or grating it .  Mix food coloring into little containers of water.  Smell spices and mix the ones you like into dough.   I remember spending hours growing up combining dirt, water and plants to make soups and cakes in the backyard.  But if you don’t like mud, you and your kids can mess with flour, spices and water at the kitchen table.    Grow cherry tomatoes in a container on your deck if you don’t want to dig up your grass.

With one or two sessions per week,  I have seen negative behaviors connected to food and eating gradually disappear, and numbers of accepted foods increase.   Why does this work?  One behavior analyst stated confidently that food exposure/desensitization approach like this can’t work, because the child can forever avoid actually putting the food in his mouth.  So….it shouldn’t work, but… it is working.  Maybe kids end up tasting a little of the food that’s on their hands.  Or maybe backing off from the conflict frees both parent and child from a learned pattern of offer and refusal.  When children start following directives involved with playing with  food, this might create positive momentum. My belief is that kids are more willing to try foods when they can touch and smell them first, and  when they learn how foods change when they are mixed, broken, boiled or baked. Kids start enjoying the contact with food and can try it on their own terms.

I love re-reading Little House in the Big Woods.   The narrative details Laura Ingalls’ daily experiences with her family’s food:  hearing the pig squeal while it is slaughtered, the delicious taste of a toasted pig’s tail, the smell of venison being hickory smoked in a hollow tree,  the sweetness of just-made maple sugar, the squeaky feel of cheese curd in her mouth while making cheese with her mother.

All kids need direct real life experiences, but kids with autism need them…..more. Learning from pictures is clean and neat and orderly, but so much is lost.

Disclaimer: Some children can be treated for selective eating at home, with professional advice and input. Children who are vomiting daily, who are losing weight or not growing, need additional assessment and may need more intensive treatment. Be persistent in seeking help, and don’t accept “watch and wait”.

“There are no right answers to wrong questions.” Ursula Leguin

Expanding interests

All sorts of kids were obsessed with Silly Bandz a couple of years ago….now they are all about Angry Birds. Shown in pics: Silly Bandz shaped like Angry Birds.

One of the defining characteristics of autism is a narrow range of interests.  Many of our kids develop strong interests which may be a positive force, providing motivation and a way to connect. At other times, the interests become obsessive, and our kids sound like Gollum, muttering  “my Preciousssssss” while gripping their beloved Pokemon or Star Wars figurines.  Legos, Disney princesses, ceiling fans, Sesame Street, Angry Birds, video games, Anime, license plates, game shows, horses, flags, planets, presidents, and traffic cones are among the many themes that attract kids with autism.  Some interests create possibilities for social interaction, while other interests are obscure and create social dead ends, or lead to obsessive hoarding and collecting of objects and facts.

Think about your own special interests, and the special interests of people close to you.  People have a huge range of interests: some people love knitting, scrap-booking, chess, science fiction, bikes, NASCAR, football, bird-watching, Triathalons, World War II, country music…….although we think of these interests as being driven by our personal preferences, they are also influenced by variables such as exposure and social reinforcement.  Familiarity plays a role, as well as the history of  sharing enjoyment with friends or family.

Kids with autism often stick with their familiar interests and may not be open to exploring something new. But they will stand out as different if they still have a Dora lunchbox in 3rd grade, or if they are talking incessantly about Webkins in 8th grade.  They will become outsiders if they don’t know what movies, characters, music, sports and current trends the other kids are talking about. Children with autism may not pick up on the contagion of emerging trends from their school-mates. Sometimes parents are fearful that their own values will be lost if they allow their child to learn about commercially popular topics. But kids with autism are often more influenced more by the adults in their lives than by kids their age.

Lady Gaga accepts the award for Video of the Year wearing a dress made of meat.

Typical kids push their parents to allow them to have access to trendy items and characters, even if their parents are squeamish.   Many parents are not entirely comfortable with Spongebob or Spiderman, and don’t want to spend hard earned money on SillyBandz and Skylanders.  But typical children will learn all they can about popular topics, even if their parents don’t let them actually watch or buy. If other kids are playing superheroes, and your son doesn’t know the names and special powers of superheroes- then he will be left out of the fun. If you are not comfortable with exposing your child to certain violent or sexual themes present in popular culture, you can still teach your child some of the basic information needed to join in. For example, you may not want your child to watch the music video for Lady Gaga’s “The Edge of Glory” but they should be able to recognize her in a picture, and be familiar with the song.

How to help a child with autism to develop new interests?

1) First, figure out what other kids the same age as your child or slightly older are interested in. Develop informants among typical kids the age of your child or a little older. Brothers and sisters of other kids with autism or family friends may be better choices than typical peers that your child interacts with socially (who will think you are weird for asking). Remember that trends often trickle down from older kids, starting in middle school or even high school and gradually catching on with younger children.   Monitor kid’s channels (Nickolodeon, Disney, PBS all have websites) for younger kids, and check out kid’s award shows (Kid’s Choice Awards) to see what’s new. Monitor advertisements on kid’s channels to see what’s being marketed to kids, and look at t-shirts to find out about characters/celebrities/themes. For older kids, pre-teen magazines (J-14, Twist) are an easy source to keep you current.

2) Consider which among the theme/interests that are currently popular might be a good bet for your child.  Think about how to introduce the new theme:  is your child a mover, a watcher, a listener, a toucher? Does your child like very rule-based/structured activities?   Is there a way to introduce this interest in a way consistent with his strengths? Kids avoid activities that are particularly demanding for them and are pulled into  what is easy and successful. Some kids tend to find any movement a lot of work — others are really challenged by sitting still for 5 minutes.   If you want something to catch as an interest, don’t introduce it in a modality which is difficult for your child. Consider strengths and weaknesses in fine motor (i.e. drawing) , gross motor (physical coordination), language processing, speaking, memory, and rule based thinking.

3) Figure out a plan for introducing the new interest. Some do’s and don’ts that may help: do use a non-parent role model, such as a preferred older sibling or a preferred therapist; don’t introduce a new interest when they are engaged in an existing interest; don’t remove a preferred item/interest in order to introduce new interest; do take advantage of moments when preferred items or other amusements are not available; do consider preferred formats such as board games, reading, and electronics, do think about interests which may share themes and structures with existing interests.

4) Keep in mind that some interests may be impossible to establish.  During the elementary years I tried to drum up enjoyment of Hannah Montana, with no success.   I did manage to establish American Idol which continues into this….11th season.   No one else in my family could do more than tolerate watching shows like Hannah Montana or iCarly, but American Idol became a special family occasion, with tracking sheets, dinner conversation, and favorite snacks.

Some more examples of  interests and how parents have gotten them started:

Sports:   One parent introduced baseball through a familiar, preferred format, the Wii, before introducing to actual play/watching games .For a preschool child who loved matching, a parent introduced football through an NFL logo matching game.

Celebrities:  for kids who have histories of intensive teaching programs (ABA/VB) you can insert naming new characters, celebrities, and conversational responses about songs, superheroes (who says “to infinity and beyond?).

Music: it’s easy to move on from Barney by putting popular music on in the car while you drive to therapy and singing along.  You may personally prefer the Grease Soundtrack — but knowing all  the words to “You’re the one that I want”   won’t help your child when the other kids are singing  and dancing to  “Moves like Jagger”.   Karaoke and dancing can be lots of fun on the Wii or Xbox. I always remember how one mom introduced a what became a  fun social activity to her son through dancing the Cha-Cha slide, a good first choice for a child who is strong at following oral directions. Line dancing is also a good choice for a child who is a good imitator.

Don’t give up!  Sometimes, you will put hours of time and energy into introducing a new activity which never catches on.  But with persistence and hard work, you will succeed.

I am  grateful to many parents who have taught me so much by sharing their lives with me.   I am also deeply indebted to Rob Harvey and Andrea Wetzel.

“I give you the light of Eärendil, our most beloved star. May it be a light for you in dark places, when all other lights go out”.

Autism and Social Skills

I got involved with autism the way lots of people do: I was dragged into it by my daughter.

She’s 16 now.  She had early intervention before she was a year old, and started a 40 hour a week Applied Behavior Analysis home program before she was 4. I’ll be in trouble if I blog too much about her, as she is just as  capable of using google as the next teenager.

I don’t like the term “recovered”.  I haven’t ever met a child who was recovered from autism.  I know they’re supposed to be out there, somewhere.  I’ve just never met one. But I do know  kids who have gotten better.

After my daughter started school,  I  started working in ABA and autism home  programs. I got used to driving again after the years trapped at home.  Then another autism mom convinced me to get certified as a behavior analyst. My friend wrote a book and got her Ph.D., but  I’m still  just an underachieving autism mom. Well okay , my daughter with autism is in high school taking chemistry and French, and is writing a English paper about the  European origins of  the Salem witch trials. My older daughter is in college majoring in math.   I’m pretty proud.

I work with a lot of kids in home programs and schools, mostly as a private consultant. The kids I work with generally learn to talk and pester their parents like regular  kids.  They are mostly in regular classes and regular schools. But even this achievement  isn’t close to the end of the autism journey. The next mountain to climb is “social skills”.

The kids with well-developed language have gaps in social skills, like potholes that get bigger all winter. They look tiny at first, but over time….the cracks open  wider and wider.  For years,  I  read everything I could find,  and went to all of the  workshops with autism social skills experts…and yet…….my bookshelves are sagging, one bookshelf even broke……and  I still get a question like “I know I’m supposed to say hi to everyone, but why should I?”  One time I went to a talk where a dad described how he created a circle of friends for his child. It involved taking the friends up in a private plane.  That’s what it takes for our kids to have friends?

(For those of you who say:  but if only you placed your bets on DIR, or RDI, or GF/CF, or Son-Rise…I repeat: I’ve met dozens of families and kids, but I still haven’t seen any recovered kids, from any method).

(And the kids I know who had ABA aren’t robots, they’re……mouthy, opinionated, stubborn, and funny).

When kids with autism are preschoolers, us autism parents stuff them full of every therapy, diet and supplement we can find a way to pay for  as we race to the kindergarten finish line.  But even the “high functioning” kids are, one way or the other,  not quite in sync socially. And maybe this is okay for the beginning of elementary school.  Sometimes our kids can even pass until about 4th grade when the popularity game starts.  They get invited to some birthday parties.  Have some playdates, maybe even a friend or two, before puberty hits.

But the invitations start to dwindle, teachers complain about nose-picking, the other parents avoid eye contact in the grocery store…. so we ask the school to put social skills on the IEP. And what happens next?  The Speech Lady sits a pile of socially awkward kids in a circle and makes them take turns talking about their weekends. They play board games with names like “Mind your Manners” and “Friendzee”.  We get a speech folder with worksheets like “Idioms” or “Joining a conversation”.

None of this has any impact on the eye contact, or on the invitations.

But: over the years we’ve collected a little band of fellow travellers. Some hobbits, a couple of dwarfs, an elf………the pothole metaphor doesn’t work anymore, as the cracks turn into chasms.   I envision us parents as hobbits all running together out of the mines of Moria, turning to see the bridges falling down into the abyss  as we barely get across.  Autism families with similar kids band together on the quest for social skills. An autism -mom- friend starts some social groups at her church: music, yoga, drama……. and then we recruit a cool rock musician to teach social skills.

This is how we think about the problem:  Normal babies love people.  Babies make cute noises just to get you to look at them. They think people are fun.  Maybe kids with autism love cuddling with their families, but they don’t tend to enjoy all that back and forth interacting, especially if there’s talking involved.  It’s more satisfying to do the same thing over and over with objects. For kids with autism, people don’t make the world better:  Adults tell you what to do, and  what you did wrong. Other kids want your stuff and mess up your toy set-up.

It takes a huge amount of thought and planning to arrange things so that a kid with autism actually enjoys other kids.  I remember the day, early on,  that we were looking at the kids in the  social skills group during free time and suddenly realized that  they were all chatting and playing in small groups, by their own choice!  And the first time we got annoyed because they were talking to each other too much and disrupting the adult led activity! That was 5 years ago…..and we’re still working hard to stay a step ahead of what they need to know.

Next time: more details about how to work on social skills for those of you who don’t have a private plane.