Monthly Archives: May 2012

A Field Trip through Autismland

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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

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Bully is finally playing in our area, at Steelstax in Bethlehem, just for this weekend!

juliebat

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.

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…

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Teaching Slang and Idioms

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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!