A Real Boy: How Autism Shattered our Lives & Made a Family from the Pieces by Christopher Stevens & Nicola Stevens, e-Book 2011 Edition; Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book by Christopher Stevens & Nicola Stevens –
7% The question everyone asks is, ‘When did you first know?’ We usually say that we knew something was badly wrong before David was two years old.
8% When David wasn’t howling, he was adorable. The first time we dared face the idea that there might be something wrong with him – something trivial, something easily righted – he was sixteen months old.
The whole street was painfully aware that David had suffered a series of ear infections. The screams that signaled physical pain were even more piercing, even more relentless, than his usual howls of protest at the injustice of existence.
Every ear infection had been chased away with antibiotics, but they always seemed to come back worse than before. It was plausible that David’s hearing was clogged, our GP agreed. He might have a condition called ‘glue ear’, where the eardrum was blocked with mucus.
That could make him indifferent to sounds and slow to talk. That appeared to explain all our baby’s problems. And glue ear was simple to fix: tiny plug-busters, or grommets, would be inserted into the bungs to clear them, the aural equivalent of Draino.
9% His unusually active mind was diverted by unusual entertainments. Bristol Zoo is a second home to hundreds of families with toddlers. The walls are high, the gates are guarded, scooters and bicycles are banned and there are no cars.
And no dogs – it’s the only park in the city where a two-year-old can hop, crawl, stagger, slide and roll across the grass without getting smeared in something unpleasant.
It’s also the only park with lions and crocodiles, of course, but moderate parental vigilance ought to be enough to ensure no one gets eaten. Parental vigilance failed, one day just before Christmas.
10% I called David’s name, once or twice, half-heartedly. I was too scared to care whether strangers thought I was a bad father for losing my child, but I knew there was no point in shouting. He had never come at our call. Never, not once.
David probably hadn’t even noticed my absence. He’d be doing the usual David things. It had to be the Insect House. And it was. He was tucked into a corner, where he wouldn’t be trampled, lying on his back and gazing at the mirror ball.
I tried to hug him, but he ducked away. He wouldn’t leave the Insect House, until a break came in the ambient music. I was holding the hood of his anorak – he wouldn’t take my hand – as I guided him towards the exit and thinking that his glue ear couldn’t be too bad if he could hear that music… he lunged forward and disappeared up a woman’s skirt.
‘Sorry!’ I said. “Sorry, he thinks you’re his mum.’ I had no idea if this was true…
‘Stop it! Stop it!” she said, jerking her leg, shouting at the squirming form. She slid a hand down her waistband to dislodge him, but it was obvious David had taken firm hold of something. I could only hope it was a thigh.
I didn’t know if I should reach inside her skirt. It might seem too forward: I’m not sure about the etiquette in that situation.
David was beaming when he emerged. Since no apology of explanation would be enough, I simply dragged him away, while his victim gaped after us.
“How was the zoo?” Nicky asked later.
‘David had fun,’ I said.
14% Some other ‘less cute’ behaviors were there too – the rug-chewing tantrums, the incessant way he crashed his head against the slats of his cot.
Nicky (on the computer) showed me the page, and I was scathing. Nicky went back to the Net, searching for stronger evidence, and found the Diagnostic and Statistical Manual of Mental Disorders, DSM IV section on Autism.
David would have to match at least six of them, from a list of twelve. It didn’t look good. David had achieved top marks on the Diagnostic Criteria for Autistic Disorder.
< My Thoughts > “DSM IV list of twelve…”
Catherine Lord, PhD. (2018), Director of the Child Mind Institute and member of the APA’s DSM-V work group explains that with the DSM IV criteria taken ‘literally’, anybody in the world could qualify for Asperger’s or PDD-NOS. That the goal of the revision was “to ensure that autism was not used as a ‘fallback diagnosis’ for children whose primary trait might be intellectual disability or aggression.”
But, Harslad, et al. (2014) caution that with the new model, DSM V, those previously diagnosed according to the DSM-IV may no longer meet the qualification for services. Clinicians have concerns that the new DSM-V will disproportionately exclude those with certain cognitive abilities, those of certain ages, and those with certain levels of functioning.
Because the ‘checklist’ has changed to a “2-Group” model, Mandy (2016) fears that those who most need ‘state’ services won’t get them. He feels that the real issue is ‘threshold’, the ‘level’ of symptoms to which everyone can agree. His concern is that ‘borderline’ people and those assessed at lower ‘levels’ of measure will be left out.
Mandy states that he is hopeful, however, that the DSM-V will now provide a new and improved picture of ‘females’, previously missed by professionals. That meeting this new diagnosis criteria will result in reducing the ‘gender-based inequities’ the DSM-IV couldn’t.
And, increase better awareness of how females seem to cope with social situations differently than males. He fears that females, while able to ‘forge’ an ‘identity’ which allows them to ‘pretend to be normal’, they are subsequently putting themselves at risk for damaging behavior.
Note: If your child has received a ‘new’ DSM-V diagnosis, which supersedes the DSM-V diagnosis, then you may be required by school districts, developmental programs, or others, to provide a letter stating the current diagnosis. When you are asked to provide this documentation, clarify exactly what they expect to see. Get that request in writing, if you can. Just saying…
14% I made a last attempt to laugh it all off, by underlining fragments of the criteria which could apply to me. ‘I’ve got dodgy social skills,’ I said.
‘I like to be solitary. I’ve got a million rituals. He’s not autistic; he’ll just grow up to be a journalist.’ ‘Stop trying to make a joke of it,’ she told me. ‘We need to talk to a doctor.’
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