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Best of 2010: Misdiagnosing Benjamin


Chris Johnston

First published in Eureka Street 22 February 2010

Spider-Man helmet set squarely on his head, feet on pedals, my three-year-old son, Ben, is set to race his luridly green pushie down our street and around the block. I break out into a slow jog, clinging to the handle mounted on the back of the bike.

Ben is a powerful little bloke and progress, especially downhill, can be too rapid for my taste. Would that it were so in all aspects of Ben's life.

With my wife, I've sailed blithely through parenting our daughter, six-year-old-going-on-30 Emily Georgia, apart from a jeremiad of teething woes and some other health scares. We came aground with Ben, who's now three and a half.

Ben often resides in a daydream kingdom of Bob the Builder, Winnie the Pooh, Dora the Explorer, Roary the Rustbucket etc. When you meet the lad, depending on his mood, you may or may not be acknowledged. He alternates between shyness and exuberance. Engagement and detachment. This has brought strident critiques of the boy from his educators.

Last year I was sitting uneasily with my wife in a room overly crowded with good intentions, early childhood educators and hypocrisy. The subject of discussion was Ben, then two, who was acting out in his preschool room.

Deplorable crimes, a litany of sins omitted and committed, were detailed 'in the interests of your child': Ignoring his teachers' directions. Zoning out if he didn't want to play or conform. Doing a runner if they were taken outside the classroom. (I had to repress a smile at the thought of his teachers trying to catch the little bugger. He's fast.) Pinching toys from his classmates (mostly little girls) and knocking down their sandcastles. In short, Ben was not behaving as his educators wished. At two.

The behavioural problems were ones we were fully aware of and were addressing at home. The grief that came from the meeting and lasted for more than a year came from the misdiagnosis of autism and Asperger's Syndrome. Waves of fear, anger and worry still wash over our nocturnal conversations when, lying in bed, we talk about the two most loved people in our lives.

The meeting ended with my wife in tears and me seething inwardly while maintaining my plastic smile. A considerable amount of pressure was stacked on our shoulders, especially my wife's, to schedule further meetings and take Ben through a battery of testing procedures.

The end play was to either have us pay for a dedicated teacher's aid for our miscreant, or to get our kid out of their institution. We ended up complying gladly; thankfully he is settling in well at his new kindy and complying much more readily with his minders' instructions.

We, however, are still concerned for Ben. We expect that concern will never depart. We pray it will be lessened. There is, undeniably, the vestigial guilt we feel that both of us are in the workforce (a fiscal necessity). I also know that the father is child to the man that Ben will become (with apologies to Wordsworth).

I was the same. My old man was very freaked if he saw me, even as a seven- or eight-year old, holding my knees and rocking away on the carpet. I was grooving to the songs in my head; Dad saw aberrant behavior that could see me judged and dismissed as not quite right. Unworthy.

The quirks of the father have been visited on the son.

The fear that dogs me, that still visits us as a family, is balanced by Ben's linguistic progress, his growing awareness of his role as a member of his community and his evident love of life.

The attention seeking, the boundary testing, the glances for reassurance, the emptying of the bathwater as he practises his freestyle strokes, the raids on the fruit bowl and the squeezing of whatever pet is unlucky enough to be within range — these aspects of Ben are balanced by sprints that end in leaps and hugs. Big, trusting eyes. The howls of laughter when he cracks a joke. The yellow, plastic hard-hat he insists on wearing to Bunnings (complete with BTB T-shirt, boardies and lime green gumboots).

The boy still stirs the shite out of his big sister. But he also creeps into bed with her to share a cuddle and receive mini-mothering.

When I hurt for Ben, he redeems my fears by taking my hand, smiling up at me tentatively and asking, 'Are you happy?' If there are scraped knees or bruised egos in the home, Ben shows compassion. 'It's okay', he says to the injured while proffering his toy de jour, 'You have Doggy, and feel better'.

The best advice we've received, from both professionals with no agenda and from our deeply partisan friends and family, is to just love our boy and let him grow in his own time.

After a horde of pediatricians, speech therapists, child psychologists etc., we're no closer to knowing where if anywhere Benjamin fits on the scale of all things autistic. We don't know. We don't have to.

Barry GittinsBarry Gittins is a Melbourne writer and journalist who runs an email/online news and information service for The Salvation Army.

Topic tags: autism, asperger's, Diagnostic and Statistical Manual of Mental Disorders, autism spectrum disorder



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Existing comments

A beautiful and poignant story Barry. Thank you for sharing your family's experiences.

Philippa | 04 January 2011  

If anyone starts labelling Ben, my advice is to stop it. His very compassion rules out autism. The latest diagnosis of Asperger's would put him in with 'diagnoses' of most of the world's great innovators and thinkers, but it isnt made for that purpose - it's to therapise him out of all his individuality. 'Normal' is seen as a blank broad plain. I am very glad that in my childhood I was called 'mad' rather than Asperger's; it gave me my freedom to be myself. He can learn to get out of his present drawbacks with your help, not a label.

valerie yule | 05 January 2011  

I'm a student of counselling and as part of my research I was just last night looking at the clinical diagnosis of Asperger's Syndrome in the DSM: The Diagnostic and Statistical Manual for Mental Disorders that child clinical psychologists use to give children like Ben a diagnosis for Aspergers. There is nothing in your article that points to Ben being anything other than a two year old who didn't fit in to his original preschool environment. Unless there's more to that your not telling us, he's just a normal child experiencing his emotions and wanting to assert his independence in the manner that is typical of two year old's in this stage of life when they begin to experience the world and interact with other children. I wish you and Ben well and your family a Happy New Year and a great 2011.

Matthew Cheyne | 05 January 2011  

Rushing to diagnosis at 2years ??? I suppose having a "diagnosis" helps prescribe how best to approach the individual; so many of us are unable to sit with what is going on, or with "uncertainty", not trusting our abilities to do the best by others without "putting them in a box" However for another inspiring story see "Born on a Blue Day" by Daniel Tammet, an eye openning and inspiring account of growing up with aspergers in a family that allowed the children to find their own path knowing that they were loved for themselves.

Carol Andrew | 05 January 2011  

Thanks for this - I missed reading it the first time around. Receiving a diagnosis that your child is not 'normal' is something I would never wish on another person. We have three 'regular' kids as well as our 'limited edition' (long story, but as a baby she was not meeting 'normal' milestones and we have since discovered that a hiccup in her brain leaves her physically and intellectually disabled). I have come to the conclusion that there is no such thing as normal. In interacting with other parents of kids with special needs, I would definitely encourage you to avoid a label as long as possible. It can severely limit a child's options in the long run. I am glad your son is thriving in a different environment and I wish you all the best.

MBG | 05 January 2011  

You have just described our grandson who has recently turned 4. Our families only have 1 year to prepare him for school and all that that entails. We wouldn't change him for the world and don't wish to label him but how will the teachers cope with constant wandering, fiddling with keys and nicking things. His handsome smile enables him to get away with alot. We just hope other kiddies love him as much as we do, that he makes some solid friendships and has a wonderful teacher.

Diane Minihan | 06 January 2011  

Oh, how my heart was with you. My little 3 y.o. grandson has just been on the same merry-go-round. From the start I felt that he was just "quirky" and for God's sake, let's celebrate quirky. As he matures, behaviours even out, although the cat still beats a hasty retreat on sighting him! Hanging labels around little necks is sometimes not the way to go. He will, in time, be accepted for who he is, not what category he can be pushed into.He's a kid, for goodness sake, and kids are just the L plate wearers on life's tricky journey!

Adoring Gran | 06 January 2011  

I loooove your Ben! We had a "Ben" called Thomas, whose most sensible teacher sent him for a run round the oval when his exuberance could not be contained within the classroom. It's a sad world that can't cope with a child who hurls himself head-first into life.

beth rees | 13 January 2011  

It would be easy to love your boy. Every family needs one. There is a tyrannical army of teachers and assorted child care experts out there and it ain't much fun to meet them unless you have docile children. Spare a thought for doctors and psychiatrists who have enormous pressure placed upon them to "medicalise" a teachers problem.

Graham Warren | 22 February 2011  

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