Misdiagnosing Benjamin

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Chris JohnstonSpider-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

Barry has struck on an emerging problem in our society, one that until a few years ago would have been impossible. Until someone comes up with something better, general diagnosis of autism is by observed behaviour. It's the behaviour that prompts people to ask if an individual may have autism. You cannot take a blood test for autism and your doctor wouldn't know if you were autistic or not. The practice has become to identify autism early, before the age of five. As a result, the services now pounce on young children with learning difficulties and behaviour problems, and scare the living daylights out of their parents by saying their child may or may not have autism. Thanks for nothing!

The insensitivity with which this 'requirement' is being handled needs to be reviewed. It's incredibly difficult. If we know someone is on the spectrum, e.g. has Asperger's Syndrome, it helps enormously in how we relate to and work with that person. It saves years of trauma and avoids social catastrophe for the rest of their lives. Misdiagnosis is happening too, and that is painful. Autism is no one's 'fault' and Barry rightly places highest value on individual worth.
The Halfpenny Bridge | 22 February 2010


Ben sounds like a highly empathetic young fellow! Dear God, bless him and his family!
eugene | 22 February 2010


Ben sounds like a dear little three year old to me, certainly loving and relating to his family in a most warm, un-autistic, normal way.

Maybe he is one child who is finding being with a group of three year olds all day a bit over stimulating and a bit hard to handle - especially if his small child behaiour is being so solemnly diagnosed by the staff.
J.Houston | 22 February 2010


While not wanting to 'pounce' on Barry's writing, a couple of things stand out in this article. The first is the line: "Ben was not behaving as his educators wished. At two." Notwithstanding how the child care facility markets itself, two year olds don't have educators; they have carers.

We are living in weird times where creches label themselves as 'early development centres'. I am concerned that Barry left a meeting with childcare staff with the perception that a diagnosis had been made. As the article goes on, the "professionals with no agenda" left Mum and Dad feeling a lot less vulnerable. We might just say "the professionals'.

The second relates to autism. It seems Barry and his wife did end up seeing specialists, who have been unable to confirm whether his boy has autism. This also suggests that they have not ruled out a diagnosis either. Ben may have autism. Diagnosis is attempted early these days, but this is actually no bad thing. In the past twelve months I have had two older children come to see me (I'm a psychologist) after enduring pretty awful experiences where their behaviour, which is due to autism, was interpreted as wilful.The boys were punished and their parents told that they were failing as parents. No parent wants to hear that their child has autism, but many find some relief in the knowledge that their child is not deliberately 'naughty.' It reduces the 'vestigial guilt.'

In technical terms, a 'false positive' (diagnosing autism where it does not exist) causes little harm to the child (the effect for Mum and Dad may be different, but this comes down to the sensitivity of the diagnoser). A 'false negative' (not diagnosing autism when it does exist) can lead to harm, and also represent lost time in terms of development.

It sounds like there are some grounds to be concerned for Ben, and that the problem is really one of a lack of maturity and sensitivity from some of the people talking to his parents about it.


Adrian McMaster | 22 February 2010


A beautiful article that tugs at the heart strings as well as made me smile. Well done Barry!
Daniel James | 22 February 2010


What on earth was a two-year old doing in a classroom? Why on earth would anyone expect a two-year old to be socially savvy? No wonder he acted out! Was he being 'hot-housed'? What are we doing to our toddlers? The pressure to conform at such a tender age seems unrealistic and it is sad that the days of freedom experienced by older generations in their infancy are no more, and that children out of institutions may be regarded as missing out.
A Person | 22 February 2010


Beautifully written and full of the love and pain that all parents feel when their children's needs are not met by their carers.

However, there are a couple of flags that worry me: full of life and love as he is, Ben still needs healthy boundaries. No three-year-old should be able to outrun his parents. The indulgence with which you allude to this behaviour makes me wonder if you are giving him enough boundaries; he's not you, and you can't heal your own past by indulging him. Loving your children doesn't mean permitting them whims that endanger and hurt. Apropos of this, the squeezing of pets is also a worry. Please work on building his empathy with animals and other children. It's also worrying when you condone his wrecking of other kids' sandcastles, especially when you seem to condone this on the grounds that the kids are 'little girls'.

I understand that you love him and that the childcare workers weren't coping with his challenging behaviours. He will be a much happier person if he can learn to control himself so as not to hurt others. If you think that's worrying when he's three, think about him as a teenager.
Hildegardy | 22 February 2010


So what if he has problems? He has two parents who care!

Anyway, his behaviour sounds more like the testing of boundaries while being a "Terrible Two" - he just may be a "normal" two year old after all.
nick | 22 February 2010


Dear Barry

Been there, done that.

Though in David's case there was just the "shock horror" of his behaviour, contrasted with his 3 sisters, until he got to high school.
Then without warning the word I had never even heard before (2002) from a deeply concerned but puzzled school counsellor. Then the ups and downs (some BIG downs), 2 psychologists (both said not Aspergers, don't really know...) 1 psychiatrist (who told me I was the one with the problem) through high school.

Too much. Often MUCH too much.

The small ray of hope from a teacher who saw only "a sensitive soul".

Said soul will turn 21 next week. Gave me the first draft of his first novel for Christmas. Starts 4th year uni today.

Never ever easy. A wondrous gift I am still unwrapping....May you be blessed as you unwrap yours.
margaret | 22 February 2010


As Ben's Queensland uncle, I don't get to see much of him. I did however see much of his Dad at that age and oh boy! And he turned out to be a perfectly productive and 'normal' member of society whose 'differences' manifested themselves in his inherent creativity and a sensitivity to others' needs that drive his social conscience to this day.

Barry's article speaks mainly of the frustration of the process and yes, it is regrettable that economics and other circumstances don't allow Ben that extra time to grow and enjoy and formulate his world experience in the safety and controlled environment of their home.

A common theme in my own educational experiences as a teacher, is the particular problems of boys- the research is continuing into the way we are disenfranchising our young males in particular. Thoughts and prayers with Ben and the family. Whether yes or no to an eventual diagnosis.... he'll still be Benjamin Dashiel and he'll still be loved and loving.
Uncle Ash | 22 February 2010


As a high school classroom teacher I see a great variety of behaviours that sometimes do not fit inside the range of apparently appropriate learning behaviours. As a counsellor/psychotherapist I have the training to categorise these behaviours and make authoritative judgements that could have a direct affect on the students in my care. As a Religious Education Coordinator I have the authority and power to direct the powers-who-be in our school to take action on the evaluations I make on the students I teach.

The real point here is that I am the adult in this learning environment and I must use my knowledge and power justly. To exercise this justice wisely means I have a responsibility to engage with the students I teach, inquire into their behaviour and support them through it. To do otherwise (that is acting in spite of their behaviour) could lead to a loss in learning opportunities, a misdiagnosis and an over emphasis on the importance of people in power being proactive.

Given that Ben is not yet three years of age; let the child behave like a child. Let the child develop into the person they are called to be. Let the joy of student and teacher interaction direct and lead learning and growth accordingly. And, most imperatively, let the parents be the loving parents they are called to be so that any future diagnosis will be to the benefit of the child and the benefit of our world.
Ryan McBride | 22 February 2010


Firstly I just wanted to thank you for writing such a great article, it is so reassuring to find that we are not alone! My son is 9 years old and has such similarities to your son in behaviour, outlook and attitude. He is dyslexic and is a square peg in a round hole. We have had countless issues with him becoming so overwhelmed at school he runs away, lays his head on the desk and won't move or lays on the floor!! I have read just about every book, searched websites and spent a small fortune on psychologists, tuition and other ways to help him. The most frustrating of all is that dyslexic children or those in the "grey" areas of autism or aspergers come under the banner of 'disability', There are no funds to help these children, no support, no schools equipped to deal with teaching outside the square.
I do worry for my son's future and hope that the environment he is growing up in combined with dedicated and loving family and friends he will find his way in life.

Thank you for making me feel like I am not alone.
Louise Jacob | 23 February 2010


Barry,
Talk about laying it on the line. You got under the skin of parenthood and give us such a brave, heart-wrenching piece.
Bravo.


Jen Vuk | 24 February 2010


Remember that early childhood educators are running a business to make money. The business model works best with a narrowly defined group of compliant children (imagine breeding a flock of sheep - you breed out all the variations that stop them being compliant while raised for the butcher). Imagination, creativity, energy, in fact any of the qualities that make a human being unique and special are not wanted in the business model. As most of our children are now herded through these business models, we need to be very alarmed indeed.
Anne | 26 February 2010


Hildegardy, I am puzzled by your comment that no three year old should be able to outrun his parents. So what do you do if you are a clumsy but normal mum with an athletic 3 year old son? I always tell people I ceased to be able to discipline my elder son physically once he learned to outrun me (at 3 years of age) but that did not stop him growing into a great 51 year old adult.
Rosemary West | 26 February 2010


Some kids just take longer to attain 'acceptable' social behaviour. They need time to be individuals before they have to be part of a crowd. They need to potter at home, to walk out with a parent, to leave their activites to return to later, to have some individual head space. No matter what the fiscal problems are, the reality is that we are forcing children to spend the bulk of their time in group situations too early, requiring social skills beyond their readiness.
June | 26 February 2010


A poignant and common enough story where I work in child psychiatry, and I'm reassured that it has evoked little polarised dogmatism!. Individual clinicians and teachers and parents show remarkable flexibility and sensitivity in responding to "different" children, but a greater number seek precision where there is none, and it is these who seem to write the policies and diagnostic manuals. I have had to "rescue" children both into and out of the autism spectrum box, and I'm sure I've made my share of mistakes.

I do question though Adrian's belief that a "false positive" diagnosis is realtively harmless: it can stigmatise the child, and it can be used as an excuse and a means of avoidance, by parents and professionals alike, of exploring sometimes real shortcomings at home and school
Paul | 26 February 2010


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