Parents are being cautioned that they may be the last people to pick up on cues their child has Asperger’s, after two experts in the field revealed they failed to spot that their own children have the syndrome.
Professor Tony Attwood is a clinical psychologist widely regarded as one of the world’s leading experts on the developmental disability and yet it took him 35 years to realise his son Will had the syndrome.
And he isn’t the only one, Elaine Nicholson, CEO of UK charity Action for Asperger’s, didn’t discern her child had the syndrome until his school picked up on his “quirkiness” and sent them to a psychiatrist.
“Despite recognising Asperger’s syndrome in one of my stepchildren, I did not see it in my own son, born seven years after my stepchild,” Nicholson told HuffPost UK.
“Why? Because each child presented with different issues.”
Elaine Nicholson, CEO of Action for Asperger’s.
Asperger or Asperger’s syndrome is a lifelong developmental disability that affects how people perceive the world and interact with others.
It is part of the autism spectrum and is sometimes also known as ‘high functioning autism’. In the UK it’s now more common to receive a diagnosis of Autism Spectrum Disorder (ASD) than Asperger’s.
“An Asperger diagnosis was previously given to children and adults who were often of average or above average intelligence, who had fewer problems with speech but had difficulties with understanding and processing language,” explained Carol Povey, director of the Centre for Autism at the National Autistic Society (NAS).
“Many people who were given this diagnosis continue to define themselves as having Asperger syndrome.”
The NAS states that making a diagnosis of Asperger’s can be difficult, because the syndrome varies widely from person to person.
“It is often diagnosed later in children than autism and sometimes difficulties may not be recognised and diagnosed until adulthood,” they explain.
Nicholson is the mother of four children, two of whom are her stepchildren. The broad range of possible signs was exactly the difficulty Nicholson she ran into when looking at her own family.
“My stepchild had quite significant speech and language issues that affected the production of his speech creating ‘babble’ and which affected him until he was 7+, but my own son did not suffer the same,” she explained.
“He was creating sentences such as ‘how extraordinary is that new toy!’ at age 20 months.
“Both did suffer speech and language issues but of varying degrees of difficulty.
“Because our youngest son was not exactly like our older son, we thought that the little differences that made him, were not Asperger’s syndrome.”
Nicholson continued: “It was not until we took our second son to a psychiatrist to check out those differences - because by then his school had picked up on his quirkiness - that, upon interviewing him, and asking him ‘if I said to you pull your socks up...what would that mean?’ and our son gestured to pull his socks up... amongst other questions asked, that my husband and I, with mouths dropped open, realised that we were in fact looking at Asperger’s syndrome once more.
“My husband is a GP, I was a counsellor working with children, our child’s grandmother worked as a teaching assistant in a special needs school, and with one child already previously diagnosed, none of us could see the Asperger’s syndrome condition in our second child.”
Attwood faced a different problem when diagnosing his son - one of proximity.
“We just thought he was a naughty, difficult, emotional kid,” he explained in an episode of ABC’s Australian Story.
It was only when his son had been addicted to drugs for two decades, and had been imprisoned for burglary, that Attwood had the revelation.
He was revisiting old family videos with his daughter Rosie, when an aspect of his son’s behaviour became clear to him.
“I was trying to interact with him, but even at the age of four, there was a barrier,” Attwood said.
″Rosie is a teacher of kids with autism and we just turned to each other and said, ‘He’s Asperger’s’.
“I realised that I couldn’t make the diagnosis myself because I’m his dad, which would make it hard to be objective.
“So I arranged for someone I know and who I very much respect to see him, and she confirmed the diagnosis.”
Attwood’s son believes the diagnosis made it easier for him to cope with his time in prison.
“Suddenly he had a road map guiding him about why he felt certain ways and this helped him to understand what he needed to do to cope,” Attwood told The Guardian.
Nicholson strongly advises any parent who has a suspicion their child may be on the autism spectrum to seek a formal clinical diagnosis.
“With knowledge comes power,” she explained.
″‘Reasonable adjustments’ may be made for your child by educators and others with a need to know.
“If your child with Asperger’s cannot concentrate because of the placing of his desk right in the middle of a bustling and noisy classroom and he/she experiences auditory sensory overstimulation, then a desk can be moved to a quieter spot perhaps and hopefully this will aid concentration.
“There are in fact a myriad of ‘reasonable adjustments’ that can be made for the Asperger’s child.
“These may happen without a formal clinical diagnosis, but of course, with demands placed on schools these days, anecdotally I know that they do not, and that formal clinical confirmation of Asperger’s/autism is necessary to get teachers to sit up and take note.”
Nicholson says in her career she has now seen more than 2,200 individuals who have Asperger’s syndrome, - “all of whom are uniquely different in their own way”.
But there are common signs parents can look out for:
Difficulties In Social Communication And Interaction
Does your child have difficulty understanding the expectations of others within conversations?
According to the NAS, people with Asperger’s tend to have good verbal skills, but may struggle to ‘read’ other people or express their own emotions. They may perhaps repeat what the other person has just said (this is called echolalia) or talking at length about their own interests.
Repetitive And Routine Behaviours
Does your child always want to travel the same way to and from school, or eat exactly the same food for breakfast?
People with Asperger’s tend to like routine as it makes the world less confusing.
Does your child fixate on flashing lights or spinning objects? Or do they find certain background sounds impossible to ignore?
People with Asperger’s may experience over- or under-sensitivity to stimuli such as: sounds, touch, tastes, smells, light, colours, temperatures or pain.
Nicholson also advises asking yourself the following questions:
* Is your child a loner, preferring his/her own company to the company of other children?
* Does your child communicate in a slightly odd way, for example, they may use over-dramatic speech to describe quite ordinary events, or they may babble, or perhaps lose speech after acquisition?
* Does your child not cope well with change, and prefers routine to such a degree that it might appear unusual to others. She often ask parents: “if you say that you are going to Tesco with your child, and upon leaving the store, decide, on the spot, to do shopping elsewhere, how might your child react?” A “neurologically typical child” would be fed up perhaps, and groan a bit, but the autistic child would be completely thrown, because he/she would have taken the communications literally - Tesco and only Tesco - and such spontaneity could lead to an autistic meltdown, whereby a child enters ‘fight and flight’ mode completely.
If you have reason to believe your child could be on the autism spectrum and would benefit from a diagnosis then make an appointment with your GP or health visitor to discuss the signs and they will decide whether to refer your child for a formal assessment (diagnosis).
“Diagnosis should be sought if an individual is encountering difficulties in life, or simply has a yearning to know themselves better,” said Nicholson.
“We should all remember there are many undiagnosed Asperger folk out there in the big wide world who are falling below the radar for diagnosis because they have been fortunate enough to navigate life’s pathway with little or no difficulty.
“Asperger’s syndrome is simply a neurological difference and has benefited modern day society enormously. I am certain that the industrial revolution occurred due to several Asperger’s syndrome brains coming together, but of course, I am only guessing!”