What I Wish You Could See

People worldwide will be celebrating Autism Awareness Day on April 2nd, friends and families alike, of those affected. We’re newcomers to the community. It’s only been a week since we received our diagnosis, and I’m still coming to grips with it. I’ll admit, having grown up with an autistic sister, I’ve seen some of the signs for awhile, and I’ve had my suspicions for months. But having suspicions and then hearing them confirmed are two different things.

Ashley was diagnosed with an Autism Spectrum Disorder. Currently*, under the autism spectrum there are five distinct disorders: Classic Autism, Asperger’s Syndrome, Childhood Disintegrative Disorder, Rett’s Syndrome and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). They each have their own set of criteria, though each has areas that overlap. Which one was she diagnosed with? We don’t know, and it doesn’t matter. As her pediatrician put it, “It doesn’t matter one whit what we call it. The specific label does not matter. I could write down on this chart that she has ‘Purple Elephant Disease.’ It doesn’t change what it is. She’s on the spectrum, she needs help.”

 So, we were told Autism Spectrum Disorder. The catch all. She will placed under the intense ABA (Applied Behavioural Analysis) program, receiving between 15-20 hours of therapy a week, on top of occupational therapy. She will also be placed in daycare five mornings a week, to help with her social skills.

 My head is still reeling a bit.

 We’ve had mixed reactions to the news that our daughter has an ASD. My mother, having raised her own child with autism, was not surprised at the news. Others wonder what happened, why she “suddenly” has autism. Here’s the thing – she doesn’t just suddenly have it. The behaviours she exhibits are not new, they’ve been there for a long time. Only the label is new.

Misconceptions about autism abound in public. Despite the increased awareness campaigns and news in the media, most people are still very unaware of what autism spectrum truly looks like. I think many have the mental image of Sheldon Cooper, the insanely smart character from the hit tv show “The Big Bang Theory”, who is emotionally deficit, and a complete dunce when it comes to social skills. You look at him and think, definite Asperger’s. Or, if anyone remembers this movie, there’s Leonardo DiCaprio’s role in the Johnny Depp film “What’s Eating Gilbert Grape?”. In that movie Leonardo plays a stereotypical autistic child who spends his time rocking back and forth, flapping his hands, having obsessive behaviours and possessing minimal verbal skills, using echolalia (repeating words or phrases).

 Neither of those are my child, nor anything close to it. My child looks normal – and that is both a blessing, and a curse. To the passing observer watching her in the store or playing at the park, they will see nothing wrong. A blessing because you are able to avoid those looks of pity that are all too commonly received when you see something “obviously” wrong, and a curse because it leaves people unable to believe that anything is wrong.

 Since she was diagnosed we’ve had the question asked, “How can she be on the spectrum? She talks!” Yes, my daughter talks. Extremely well I might add. What they don’t know is that the only way she knows how to communicate anger or frustration is by screaming. The people in the store see her sitting in the cart or on a bench letting out short screams and think she is throwing a tantrum, they probably think I don’t discipline her. What they don’t know is that she is overwhelmed and that’s the only way she knows how to tell me.

 If they saw her in the playroom they would see her make a lovely bowl of pretend soup in her kitchen. They would see her give her doll a bottle. So where’s the problem? In her silence. Where most children her age are making up pretend stories and having conversations with the toys, making the trains go “Choo choo”, my daughter is silent.

 If you saw her at playgroup, you would very likely see her running around laughing with the rest of the children as they play a game of chase. Her laughter is contagious. So where’s the problem? When that game is done, she will retreat. Instead of joining the others her age, she will ignore them. She will not look at them, she will not talk to them, and normally, she will go off into a corner and play by herself.

 They see her giving her brother a hug and kiss and think, “She can’t be on the spectrum, she’s so affectionate!” But they do not see her inability to handle frustration or overwhelming emotions. They do not see her hide her face and yell, “I not! No!” when you praise her. They do not see her retreat to hide behind the door or under the table, so overwhelmed that she can’t cope with someone being near her. They do not see her hide her face or hear her yelling, “Don’t look at me!”.

They do not see her many sensory issues – they see her beautiful long blonde hair looking messy, and probably wonder why I don’t comb it. What they don’t know is that she she screams almost every time I try and brush her hair. They do not know that in order to get her jacket on her we often have to go through a meltdown. They might see her in pyjamas in the middle of the day and think I’m lazy for not changing her. What they don’t know is that she often struggles with clothing changes.

They do not see how she gets fixated on things, like how you have to cross a certain bridge on the way home or she will scream. They see her wearing sandals in March and probably think we’re neglectful, they don’t realize that the only way we could get her out the door without her screaming and hitting us was to let her wear her new “pretty flowers” as she calls her sandals.

 All of these are some of the things that you will never see when you look at my daughter. You will just see a beautiful, smiling, blonde-haired, blue-eyed girl playing in a mud puddle. Do you see now? That’s what autism spectrum can look like. Normal.

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 *New diagnostic criteria is to be released in May.

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