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"If only I could smile, say ‘Asperger’s’ and all would be understood."

 

 

 

 

“Can’t you read?” she screams. My eyes close for the three seconds it takes to prepare for whatever is to come next, and to consider how I might deal with it. I look across the playground and spy the target; 40 metres away an elderly woman, the kind who still wears a hat and tweed coat, is walking with her fluffy miniature puppy. I’m racking my brain now. What is she doing wrong? She is not trespassing, not littering, not jay walking…

“I SAID” the voice bellows, “Can’t you read?” The elderly woman stops and looks over at us. “The sign clearly says ‘No Dogs Permitted Off The Lead’ You should be in jail!” The woman looks horrified for a brief moment, then registers that the booming authoritarian voice belongs to my angelic doll-eyed, then 4 year old daughter.

I attempt to give the woman a ‘kids say the darndest things’ smile, and she seems to accept this. I guess at what she is thinking, or will be talking about with her neighbour back at home though, “How rude” or “How peculiar that a child should be so concerned about my little dog” or perhaps “How would a child that age even know how to read that sign?”, and of course, “What sort of mother has she?” There will be plenty of tongue clicking.

My own thought is stock standard: If only I could smile, say ‘Asperger’s’ and all would be understood.

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Children with Asperger’s can be ‘little policeman’ and are sticklers for rules. Rules that actually exist and their own rules they create in their minds to make sense of this alien world they have been dropped into.

In retrospect, I should have known my daughter wasn’t typical years before The Diagnosis.

She is two years old, a healthy toddler visiting a doctor for the first time, for a cold just a little more serious than others. “Now I’m just going to use my shiny bobbler to check how you are ticking” he explained in the experienced way doctors have of placating little ones who may not comply with examination. My girl sets him straight, “It’s a stethoscope, Dr Wilson. You are using it to measure my heartbeat”. We laughed, no humouring her! I recounted this scenario to friends and family. “Where do they pick these things up?”

Children with Asperger’s are literal. They have difficulty with language and communication, so they make it simple. Using one word for one object, that makes sense to them. Many adore technical, melodic or new words that they can practice on their tongues for a few days after learning it. ‘Stethoscope’ meets all this criteria.

Not long after the doctor visit, she is begging us on a daily basis, “Can we go to the monkey playground?” This is not an unreasonable request and we will happily take her, if only we knew where she was talking about. Do you mean the zoo? No. The beach park? No. The park near Nan’s house? No. We can’t figure it out and its driving us spare. Weeks go by and one day from the back seat of the car she’s shouting, causing me to break suddenly “There! There! The monkey playground!” Aha! An indoor play centre we went to one time to celebrate a cousin’s birthday, when she was 11 months old and still in her stroller. It is a plain brick building, lots of posters on the windows, and on one A4 size ‘Yes! We Are Open’ sign on the door is a tiny picture of a monkey.

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Children with Asperger’s can be ‘little policeman’ and are sticklers for rules.

Children with Asperger’s have an elephant’s memory, and an incredible eye for the details most of us miss, or deem irrelevant to recall. There is so much information being retained in their brain, is it any wonder they forget the daily social chit chat of our lives – the stuff they think is irrelevant? Who can remember to flush the toilet, say ‘hello’ to Grandad or comment on the weather when there are details like the monkey on a welcome sign to occupy the mind?

Age 3 and she begins swimming lessons. A typical outing, except for us, the 15 minute drive to the pool will, in time, take me to the brink of frustration and back again. “Mum, how is grey made?” I know the answer to this one, “By mixing black and white”. Small pause. “How is black and white made?” I’m stumped. Next question. “How are wrenches made?  “Umm… in a factory”. Lame I know, but it’s Monday morning and I’m on the way to a toddler swim class.

“Well, then, what does ‘most’ mean? Ahhh… let’s see, it means… I’m struggling, but manage to come up with, “Not the least!” I’m so satisfied by this answer but she looks at me like I’m the fool that I am. She asks me these four exact same questions, in the exact same way, listening to my exact same response every Monday morning on the way to swimming for the next 3 years.

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Boys with Asperger’s are often referred to as ‘little professors’, while girls with Asperger’s are cast as ‘little philosophers’. I know from the one philosophy class I took at Uni, that this field of study involves a lot of questions being posed and very little in the way of definitive answers. Children with Asperger’s never ‘just let it go’. Ever. They also thrive on routine and repetition.

She starts school at the local primary school, and begins dance lessons. She has The Diagnosis by this time, so we surmise that dance class is a fantastic way to provide her with a structured activity with strict rules and pseudo-socialisation with peers – plenty of opportunity for parallel play, lining up in rows, often according to age or size, and everybody following the teacher up the front. One day a friend comes to play after school. I give them an idea for a game – make up a dance and put on a concert for us. They do, and it’s brilliant. “Well done!” I clap, “Bravo!” My girls chagrin is palpable, “Well I was really good. Ella wasn’t. She doesn’t do dance lessons, so she can’t do it properly”. Ella, naturally, goes home in tears and that’s the last we see of her.

Children with Asperger’s have difficulty forming and maintaining appropriate peer social relationships. Will there ever be a time when I can smile to Ella, simply say ‘Asperger’s’ and have her understand?

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Not long after her 6th birthday, sitting around the dinner table. “It seems apparent, Mum. Mary is dead.” Yes, I explain to her how sad we are that our good friend has died, especially given that we didn’t know she was sick. “Well, the service is at St Marys. You can pick me up early from school. Dad can take the station wagon; he will be coming from work. Meet him out the front at 2:30. Ester can mind the baby; she is too young for a funeral. A drink at the Elephant and Castle afterwards will be appropriate.”

Children with Asperger’s have difficulty identifying and labelling their emotions. My girl compensates for this difficulty by being a ‘problem solver’. If I were in any major accident, life crisis or minor inconvenience, I want her by my side. I never expect she will put her arms around me and share tears for Mary. The way she processes information often results in an over-reaction to the slightest sensory bugbear – a 30 minute tantrum because her pony tail is too loose – and an under-reaction to real catastrophe. This is a positive trait when everyone else is falling to pieces and she can guide us out with practicality.

Today, I have just returned from the frenzy that is the Myer Stocktake Sale. The shoe department at 4 o’clock looks like a tsunami has hit, and has my girl declaring “This will never do!”, as she sets about sorting, ordering and matching all the picked over, tried on, rejected size 5 and 11 footwear  that Myer can’t pay us to take home. The sales assistant looking on seems pleased at her efficiency – at least she won’t have to do it – and we laugh about how she will get a job here one day. Typical girl just loves shoes.

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“I immediately see I don’t have to begin my usual rote monologue while talking to a blank stare, “Asperger’s, it’s a neurological disorder on the autism spectrum that causes difficulties with social language…”’

Except that she’s not typical and she doesn’t love shoes at all, she just can’t stand the disarray, it gives her a headache. On completion of the task, the shoes are certainly lined up neatly, but why are the Sandlers, Wittners and Diana Ferraris all mixed in together? “I’ve put them in order from those that will make the softest sound to the loudest sound when walking on a timber floor.” Her tone implies only an idiot would sort them any other way.

Children with Asperger’s often learn by pattern, or by patterns that may only make sense to them. I smile at the over wrought sales assistant who is now faced with a massive tidy-up mission. I decide to test the waters. “Aspergers” I smile nervously. She smiles back! She knows! She gets it! Perhaps she knows something about it; she might even have a nephew, or a neighbour. I immediately see I don’t have to begin my usual rote monologue while talking to a blank stare, “Asperger’s, it’s a neurological disorder on the autism spectrum that causes difficulties with social language…”

Today all is understood.

Carolyn Robertson works in Youth Welfare and lives in Geelong with her supportive husband and beautiful daughters; an 8 year old and twins, 4. You can follow her on twitter here.

Do you have any experience with Asperger’s, or do you know someone else who does? Is your experience of ‘little policemen’ the same?