Parenting

How an Autism Expert Failed to See His Own Son's Asperger's

How an Autism Expert Failed to See His Own Son's Asperger's

Many children with Asperger’s syndrome are initially diagnosed with ADHD and then later diagnosed with Asperger’s syndrome in adulthood when seeking help for directly related matters such as depression or persistent anxiety.
This is how it took professor Tony Attwood, clinical psychologist, 35 years to realize that his own son, Will Attwood, had Asperger’s syndrome.

How did this happen?

It was only until his son ended up with a drug addiction and in prison for burglary that the expert received an abrupt insight into Will’s problem. Until then, professor Attwood had been reluctant to watch old family videos because it was too painful for him to see Will as a toddler, at a time before his addiction. While watching one of the videos, professor Attwood noticed a limitation, or rather an inability, to connect with his son. “I was trying to interact with him, but even at the age of four, there was a barrier,” he said. “I was giving him all signs of interaction and trying to play with him, and he was basically in a world of his own. It wasn’t shyness, because he knew me. Something more was going on,” added professor Attwood.
A few minutes into watching the video with his daughter Rosie, a teacher of children with autism, they turned to each other and said “He’s got Asperger’s!” simultaneously.

Familiarity with ASD

When Attwood was 19, he was a volunteer at a special school in England. It was there that he first came across children with autism, who were then defined as experiencing ‘childhood schizophrenia’. He knew that he wanted to learn to understand them and that is how he decided that he would dedicate his career to diagnosing and managing ASD. “On one end of the spectrum you have children who are silent, with no speech and poor communication skills and who need a high-level of support in a special school, while on the other end is someone working as a professor or engineer,” he said. Attwood had also grown up with a stepfather who was on the spectrum and so he learned to speak the Asperger’s syndrome language, or “Aspies”. “I describe myself as a translator between two different cultures — to explain the neurotypical world to the Aspie and the Aspie world to neurotypical,” he said.

Asperger’s didn’t have a name until the 1940s

Many individuals wondered how the internationally recognized expert could have overlooked a diagnosis of his own son. “We just thought he was a naughty, ADHD, difficult, emotional kid,” he said. As professor, Attwood had noted Asperger’s syndrome had not been given a name during Will’s childhood. “I realized that I couldn’t make the diagnosis myself because I’m his dad, which would make it hard to be objective. And love is blind. So, I arranged for someone I know and who I very much respect to see him, and she confirmed the diagnosis,” said professor Attwood. 

How Will’s diagnosis shaped his future

His son Will just finished serving a two-year sentence, and said that receiving a diagnosis had made his time in prison easier to cope with. “Previously he was lost in the social world not knowing where he was going, but 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. Will is now writing a book to help people with Asperger’s cope with prison, as a very high proportion of those in alcohol and drug dependency services have Asperger’s and often end up in prison because of that. So really, I see him as a hero,” said professor Attwood. 

Dr. Michelle Garnett, Attwood’s clinical colleague, stressed that he was the first to view Asperger's syndrome as a gift and not as something to be fixed. “It’s something to be congratulated for, something to be enjoyed in the person’s life, and we always look for those gifts, those strengths and abilities that the person has because they’re always there” said Dr. Garnett. Attwood’s ongoing research had also taught him that individuals with Asperger’s syndrome should be seen for their strengths and not viewed by their limitations. He believes that his interest in the field allows him to connect with individuals with Asperger’s syndrome, help them reach their full potential, and lead fulfilling lives. “I think many of the heroes in life, and the greatest scientists and artists, actually have Asperger’s syndrome” he said. “Realizing that Will has Asperger’s was an intense relief. Before that it was like trying to make a 5,000-piece jigsaw puzzle without the picture, and then suddenly you’re given the picture on the box. I can now explain to him what is happening to him in his language, in ‘Aspergese’. I now know he wasn’t trying to be a difficult child and that I wasn’t a bad parent. And when I talk to other parents now, I can tell them I truly understand the genuine feeling of being an exhausted parent” he added. 

What if diagnosis came earlier?

Still, professor Attwood could not help but wonder what might have happened if his son Will had been diagnosed early on as a child. “In hindsight, there are things that I’d have liked to have focused more on in terms of helping him cope with his intense emotions, but sometimes, as a parent, it’s hard to be objective in that situation,” he said. Sarah Attwood, Tony’s wife and Will’s mother, believes that her husband’s early intervention programs, helping patients deal with Asperger’s syndrome nowadays, could have helped Will during his childhood. 

“Nowadays, we would have taught him how to manage his frustration…to sort of self-soothe and stay calm. He may even have avoided the drug path, who knows, we’ll never know” she said. When asked about his late diagnosis, Will Attwood stressed that he does not hold his father responsible for being unable to diagnose him as an early age. “I don’t hold it against him in any way, shape or form for failing to diagnose me. It seems to me, for whatever reason, that my Asperger’s was less pronounced when I was a child,” said Will. 

With 1 in 68 children being diagnosed with a form of ASD, such as Asperger’s syndrome, Professor Attwood ponders over whether the disorder could be the ‘next stage of evolution’ - “I think in the future some of our major problems, whether it be pollution, electricity or whatever, will be solved by people with Asperger’s. I think we need to embrace and encourage their particular abilities because our future is based on such individuals. And in a way, is Asperger’s syndrome the next stage of human evolution?” 

References

https://www.autismspeaks.org/what-autism/asperger-syndrome

http://www.abc.net.au/news/2017-09-25/how-tony-attwood-missed-aspergers-diagnosis/8960460

https://www.theguardian.com/society/2017/sep/25/why-the-world-expert-on-aspergers-took-30-years-to-notice-condition-in-his-own-son

http://www.huffingtonpost.co.uk/entry/could-my-child-have-aspergers_uk_59c8e451e4b01cc57ff36afb