Happy Autism Awareness Month!

Today is the last day of April, which seems to have been “National Awareness Month”.  Folks were encouraged to wear blue and green on April 19th to recognize Organ Donation.  It was dubbed “Child Abuse Prevention Month” as well.  Additionally, it was “Jazz Appreciation Month” according to Toledo’s 88.3 WXTS - Real Jazz For Those Who Feel Jazz!  

It is also “Autism Awareness” month.  While I think organ donation, child-abuse prevention and Jazz appreciation are all causes worthy of your attention, I have a particular vested interest in Autism, which is also worthy of your attention.  In keeping with the “awareness” theme of April, I would like to make you “aware” of some things.

My son, Matt-Man, was diagnosed as Autistic in December of 2011

My son, Matt-Man, was also diagnosed with a rare genetic syndrome called “15 q 24 Microdeletion Syndrome.”  If I may bore you with some genetics, everyone is born with 23 pairs of chromosomes.  Those pairs are numbered.  On Matthew’s Chromosome 15, he is missing 9 genes (they have been “micro-deleted”) on the “q” arm of the chromosome.  It is not likely that 15 q 24 causes Autism, but neither are the two mutually exclusive.  Among other medical conditions (growth-hormone deficiency, 15 q 24 Microdeletion Syndrome, and those lady-slaying handsome blue eyes) Matt Man is also Autistic.  

A very ugly misconception regarding Autistic kids is that they are stupid.  More than a few times in the last few months I have had different people (all of whom I suspect had good intentions) tell me, “Did you know Matthew can talk?”  This usually comes after they have babysat him for an hour or so, having only previously unconfirmed misconceptions about what he is capable of.  

The sarcastic adolescent buried deep inside me wants to make a smart-aleck comment like, “Are you kidding me?  He only grunts and burps when he’s at home.  It’s a Festivus Miracle!”  The short-tempered Irish guy inside wants to throw a brick and say, “I know he can!  What!  Do you think he’s stupid!?  I’ll show you stupid!!!”  Yet, the polite pastor inside of me, remembering what it was like to be unaware of an Autistic kid’s potential, quietly says, “Yup, he sure can!”

Truth is, he is incredibly smart.  One of the reasons I don’t get ugly when people are genuinely surprised at his intelligence is because sometimes he takes us by surprise too.  He has an impeccable memory.  Quite often, we will hear him singing a song that we didn’t teach him, only to find out it is a song he has only heard once.  I also have a feeling he has perfect-pitch—he is quite a remarkable singer.  He is an adept problem-solver and also very preceptive.  

Another ugly misconception regarding Autistic kids is that they are unemotional, or that they have no feelings.  Indeed, he may be oblivious to social and emotional cues of others, but he does have feelings.  He knows what he likes and he knows what he hates.  He likes Tonka trucks, bacon, Chick-Fil-A, and gets excited when he sees his teachers and friends from school.  He loves piano, but he doesn’t like dad playing piano when he wants it all to himself (he has often pushed me off the piano bench saying, “Daddy, do you want to leave?”).  He doesn’t get excited by some of the same kinds of things that excite other kids, but he loves what he loves, hates what he hates, and is passionate about many things.

Whereas most people might be able to tell if someone else is sad or angry simply by reading facial expressions, such non-verbal cues might be completely missed by Matthew.  However, he does understand that crying and tears equal “bad”, and when he hears his sister crying, nobody has more empathy than our son.  He is usually the first to her side, saying, “Audrey, are you okay?”  He is also quick with hug and a kiss to her forehead to make her all better.  On the other end of emotions, he loves to laugh and he loves to make others laugh too.  Our little comedian will do something that his siblings think is funny and will do it again and again until someone inevitably pees their pants.  

Matthew is still a kid like other kids.  He loves cars and trains.  He loves his trike.  He especially likes to ride his trike at full speed, crashing into our car.  He likes sitting on our laps with a favorite book.  He loves “Good Night Moon” and still to this day laughs hysterically when he gets to the part, “Good night, nobody!”  Like other kids, he loves junk food and hates vegetables (and as his parents, we don’t let him off the hook until he eats his vegetables too).  He loves the playground: running, sliding, swinging, climbing, falling, and getting dirty.  And like other kids, he often throws a temper-tantrum when it’s time for bed.  

He has grown exceptionally well over the last year, but so have we.  For instance, it is futile to attempt to get him excited about some things he genuinely doesn’t care about.  If I find something interesting, I can tell my neuro-typical 6-year old, “Hey, come look at this!” and usually he finds it interesting too.  I cannot do that with Matt-Man.  If I find something interesting and tell him, “Hey, come check this out!” he might come, but loses interest very quickly.  Instead, we have learned that instead of him joining us in the things we find interesting, we need to join him.  

For instance, he gets lost in cars, driving them in circles atop the ottoman in the living room.  Nothing we do can divert his attention away from those cars.  However, he loves it if we also grab a car and join him on the ottoman and ask, “Where are we driving?”  Then we can say, “Hey, let’s drive to the grocery store,” and on hands and knees, as we drive our cars to the kitchen, he will follow us and help “pick up” imaginary groceries from the fridge.  Then it’s off to the bank so he can get a sucker!

If you know an Autistic kid (like mine), I wouldn’t recommend trying to divert their attention from the things they love.  Instead, join them in those things, and try to expand those things a little at a time.  If the kid (like Matt-Man) likes driving a Hot Wheels “to school,” “go to school” with him, and then encourage him to “drive to the bank”, or to race.  

And if you know an Autistic kid, let him or her play with your kids.  We have had stellar therapists providing wonderful programs for Matthew’s continual development, but they work much better when Matthew is modeling neuro-typical peers, seeing what they do and copying it, hearing what they say and repeating it.  Matthew’s progress explodes when he is able to model other kids, and those other kids benefit too from being able to accept and interact with kids who are very different from them.  

Matthew is different, there is no hiding that.  But he is also very smart, very funny, very kind, very sweet, and has as much potential to succeed in life as any other kid.  Even with all the challenges afforded to us by Autism, 15 q 24 Microdeletion Syndrome, Growth Hormone Deficiency, and those lady-slaying handsome blue eyes, our family is better off in every conceivable way because God gave us Matthew.  And so with that, you have just been made “aware.”

Happy Autism Awareness Month!

“Echolalia” and Small Victories (and Small Victories)

“Echolalia” is one of the fun new words that has entered our vocabulary in the recent past. Merriam-Webster’s dictionary defines it as “The often pathological repetition of what is said by other people as if echoing them.”  Echoes can be fun.  There are some places where you can talk and then hear your own words bouncing off of walls, or coming back at you from inside a cave.  “Echolalia” is when someone else echoes what you say.  For the longest time, this is how Matt-Man has talked, and even to this day his speech is very much echoing word-for-word the things we say.  It’s like he is a cave, and when I speak to him, whatever I say bounces right back.

In general, this is how all people learn to talk.  Our infant daughter is learning to talk and does her best to mimic the consonant-vowel combinations we say to her.  Evangeline won the game of getting her to say “mama” before I could get her to say “dada”.  Pretty soon, however, her vocabulary will increase to about 10 words she can use on a regular basis and after that, her speech will boom exponentially.  All of the words any of us know were words that we heard someone else use and we found the right context in which to use them.

My 5-year old participates in “echolalia”; the annoying 5-year old version where a child repeats everything you say just for the sake of being annoying.  For instance,

Me: Nathan, what are you doing?
Him: Nathan, what are you doing?
Me: No seriously, what the heck are you doing?
Him: No seriously, what the heck are you doing?
Me: Stop it, that’s annoying!
Him: Stop it, that’s annoying!

Even verbal threats can’t stop him from this.  The sequence of “I speak” and “he obnoxiously repeats” usually ends when I say, “Nathan eats boogers!”  That is something he will not echo.

While all children learn to talk by repeating what others say, and while other children repeat what you say just to get on your nerves, Matt-Man echoes to an obsessive degree, as do many verbal Autistic kids.  It was cute to begin with.  We would encourage his speech by saying, “Matt-Man, say ‘Mommy’”.  He would respond with the exact same phrase, word-for-word.

“Hey Matt-Man, let’s go for a walk.”
“Matt-Man, it’s time for a bath.”
“Come and get your diaper changed, buddy.”

All of these and more would receive the same “echolalic” response.  Again, all kids learn to speak by repeating words they heard from someone else.  Yet at some point, kids take their corpus of words and make it their own.  They begin to use those words in a context that makes sense and can respond appropriately to questions when asked.  I could have a conversation with my older son when he was 2.  Granted, it was a very basic conversation, usually about what was for lunch or Sesame Street, but he had taken the words he learned and used them to have a meaningful dialogue with me.  This has been hard to come by for Matt-Man.

He is steadily improving, even within the last few months (now that he is almost 4).  Much of his speech is still echolalia, but more and more his repetition is in context.  He clearly repeats words and phrases he has heard us say, but he uses them at the right time.  He is exceptionally food-motivated, and the only time he will voluntarily engage us in conversation is when he wants a snack, or lunch, or a snack, or a drink, or a snack.  We used to say, “Do you want some peanut-butter toast?” and he would answer, “You want some peanut-butter toast.”  It was only a few months ago before he would switch pronouns and say, “I want some peanut-butter toast” when asked.  And now, he doesn’t even need to be asked.  Instead, he will tell us, “I want some peanut-butter toast.”  We had never been more ready and willing to satisfy a child’s desire for a snack than we were the first time he, on his own, asked for some food.

It took no time to convince him to talk when motivated by food, and it seems, much to the chagrin of mom and dad, that he echoes those things we would prefer he didn’t remember.  For instance:

Me, yelling at the TV: That stupid idiot!  If you’re a major leaguer, you should be able to turn a routine double-play!
Matt-Man: Oh no, that stupid idiot!

Finally, there are those things we would give a kidney to hear him say and no matter how hard we try, he simply will not budge.  We have tried for the longest time to get him to say, “I love you, mommy,” or “daddy.”  It’s funny; I could probably get him to recite the Pledge of Allegiance backwards if it involved receiving a Twix, and just about everything he hears throughout the course of a day, he echoes, but if we try to fix his mind on loving mommy and daddy, he stares at us stone-faced.  He can copy his brother when he says, “Guess What?  Chicken-Butt!” but I couldn’t pay him to say, “I love daddy,” even with a Twix.

However, just the other night, we got what has been the biggest, most uplifting surprise to date.  We follow a pretty regular bedtime routine: clothes off, go potty, jammies on, brush teeth, hop in bed, pray with mom and dad, kiss and hug goodnight.  This is usually where we push the hardest, “Say, ‘I love you mommy’. . .” met with the same stone face every night.  That particular night, nothing was out of the ordinary.  The boys undressed, went potty, put their jammies on, brushed their teeth, hopped in bed, prayed with us, and got a kiss and hug from us.  And as always, we tried to get Matt to say, “I love you mommy/daddy,” and not surprisingly, we were met with a stone face.  Nevertheless, we told Matt that we loved him, and told Nate the same.  That’s the moment when we had the biggest surprise, at least in Matt’s life.  Totally unprompted, and without us having to offer him a Twix, Matt-Man said in the clearest, most distinct voice, “I love you, Nate.”

Echolalia, for sure, but echolalia with incredible meaning.  Echolalia, but genuine and sincere.  Echolalia, but Matt-Man meant it when he said, “I love you, Nate.”  The dad in me would love for that to have been my name, but not only did Matt-Man echo in context, he also expressed affection for his very best friend—something that has been incredibly hard to come by.  I am satisfied with that.

Echolalia can be cute.  It can also be a bit frustrating.  Sometimes I wish I could just chat with my kid, about bugs, snowmen, baseball, or cars.  I can’t do that.  I have good reason to hope that some day I will be able to do just those things, but if God were to forbid him ever to speak another word, we will always have the memory of those unprompted, sincere words from one brother to another, “I love you, Nate.”  It was meaningful to us, his parents, and you bet it was meaningful to Nathan too!  So frustrating as it may be, we celebrate the small victories.