Orange and Purple: Talking About Autism

I slowly drew a picture of a rainbow, with all of its colors.  Red. Orange. Yellow. Green. Blue. Violet.  I thought to myself, "Just stick to what you know.  Stick to colors.  Colors make sense.  You can use a rainbow to explain things to him." 

Tyler will be 9 years old in two days.  He has blonde hair and blue eyes.  He has a slightly crooked smile.  He is smart and sensitive and sweet.  He loves chicken strips and pizza.  He likes to wrestle. He also spends his spare time learning facts about outer space.  His current fascination is Mars.  He is also autistic.

Tyler was diagnosed with Autism Spectrum Disorder about a year ago.  You can read about it here. This week is the anniversary.  But the date doesn't bother me.  Finding out Tyler was on the spectrum was almost a relief.  All the diagnosis did was give me more information about my son. It told me what I already knew, but gave me an explanation for some of his behavior.  For example, Tyler is super sensitive to smells and sounds. Mashed potatoes make him gag. (Sensory issues.) Too much noise makes him panic. (More sensory issues.) He's so honest he seems rude at times. (He told a man with long hair that he looked like a girl. And he has no stranger danger.  Some social skills are lacking.)  He gets along better with adults than kids his own age.  He has an incredible vocabulary and speaks like a professor.  He's super smart academically, but has trouble making a sandwich. He also has trouble with fine motor skills, so tying his shoes and writing (neatly) with a pencil are difficult for him.  Tyler is considered to be on the "high functioning" end of the spectrum.  (I don't particularly like that term. He would have been diagnosed with Asperger's, if that diagnosis still existed.)

How do you know when it is the right time to talk to your child about a diagnosis?  I can't answer that.  I waited a whole year.  Last year was challenging, for both me and for Tyler.  It never seemed like the right time. But this year, after his IEP, I knew it was time. Tyler has been struggling with a few things, so maybe understanding why will help.  He has trouble with fear and anxiety. And I want to help him figure out ways to cope.  The school and I are both going to work with him.  We are going to try breathing exercises and stretches and tensing/relaxing his muscles, because he doesn't know how to calm himself down.  We're also going to let him take breaks when he gets too overwhelmed and encourage him to speak up for himself. And as he gets older, if he needs it, I will look into the possibility of medication.  Because panic attacks are not fun.  I know from experience.

And yes, I realize that everyone has trouble with anxiety to an extent...but Tyler gets so anxious about things that it interferes with life.  He hates to feel like things are out of his control.  He wants to know what is expected of him. He likes schedules. And he is a rule follower, to the extreme.  When other people break rules or do things that they aren't supposed to, it freaks him out.  He also hates trying new things.  I try every year to get him to try new sports, or Boy Scouts, or even get him to go to VBS during the summer.  It causes panic attacks.  And although he still loves wrestling, he hates going to the meets. He's terrified of competing.

Last week, I went with Tyler on a field trip. He went ice skating for the first time with his class. Instead of being excited, Tyler was scared.  I don't know if he was scared of falling, or of getting hurt, or of being made fun of...but whatever the case, he did not want to go. I stayed by his side until he got the hang of it.  But I can't be there for everything. And life is not always predictable. That's why coping strategies are necessary.  You can't avoid anything and everything that causes anxiety--or you'll miss out on a lot of fun things too.

So, anyway...how did the talk go???

I pointed to the rainbow that I had drawn and asked him, if Derek was a color, what color would he be.

"Orange?"

Perfect.  I wrote Derek's name down next to the orange color of the rainbow.  Then I asked him if he and Derek had anything in common.

"We both like Minecraft.  And superheroes. And Star Wars. But Derek likes The Green Lantern a whole lot.  And I'd rather study the stars."

"That's great, Tyler.  And I like how you pointed out some differences too.  Can you name a few more things?  Like...you both like ice cream.  And you both hate going to the dentist and you are both picky eaters."

"Derek is pickier than I am."

"That's true.  But you both hate vegetables.  And you both hate meatloaf."

"We both hate being sick.  And taking medicine.  And going to the doctor."

"Absolutely.  Hey, Buddy...do you remember that book about cats I read to you?  All Cats Have Asperger's Syndrome?"

"The one about Derek?"

"Yeah.  Well, Asperger's is actually on the autism spectrum.  Do you know what a spectrum is?  If sunlight passes through a drop of water, it makes a rainbow and forms all of these colors.  The rainbow is considered a spectrum.  Well, autism is like that, because everyone on the autism spectrum is so very different.  Well, it turns out that you are on the autism spectrum.  Just like Derek.  So, if you think he is orange, I bet you'd be a totally different color.  What color do you want to be?"

"Purple?"

"Purple is awesome."

"Mom, are you autistic?"

"No, Buddy.  But I'm bipolar.  That means I have really bad mood swings.  And I have to take medication to prevent me from being too sad or too happy.  See, everyone is different.  We all have our own challenges.  We just have to learn how to live with them."

"Is anyone else at the school autistic?  Besides Derek?"

"I don't know.  If they are, they don't talk about it.  And you don't have to either.  But I don't want you to be ashamed of it either.  Ever."

And our talk continued.  I let him ask a billion questions.  I showed him pictures of prisms and other examples of spectrums.  I told him that Isaac Newton and Albert Einstein were thought to have been on the spectrum.  He liked that.  A lot.  I told him that he could still be whatever he wanted to be--an astronomer, an astronaut, a paleontologist, a doctor, or even a physicist.  He just had to believe in himself and work hard.  He couldn't let autism be an excuse for not doing something.  If it made something hard, he (we) would just have to be creative and figure out an alternate way of getting it done.  And I also reminded him that everyone is different and unique, and that he was still the exact same person he was yesterday.  We loved him, no matter what.  Autism was just a descriptive word.

I thought about our conversation that night when I went to bed.  Should I have said something differently?  Or done something else?  It was not an easy conversation. Forget the birds and the bees. Telling your kid they are on the autism spectrum is much harder.  But I want my kids to be able to talk to me--to be comfortable asking me questions, even the hard ones.  So it had to be done. Tyler doesn't remember a time before autism.  His brother was diagnosed when he was not even 3 years old.  Tyler remembers when Derek didn't utter a word.  He thinks it is "normal" to have therapists in and out of the house all day.  It is all he's ever known.  He doesn't think it is strange that Derek has dry cereal for supper.  It just is.  He loves his brother.  He's proud of him and all that he has accomplished.  But now, to be given the same diagnosis as him?  It has got to be confusing.  Especially since my boys really are so very different.  This spectrum is very, very wide, folks.  Tyler seems to be taking it well.

I keep reminding myself it's just autism, it's not the end of the world.  But, considering Tyler's fascination with comets and asteroids and meteors, a conversation about the end of the world might have been easier.  ;)