“I would never have known you were autistic. So how do you manage to….? But you’ve hidden it so well. And you’re sure that’s what it is? We’re all somewhere on the spectrum though aren’t we.”
If you were diagnosed late then it is very likely that you will have encountered the above or similar when sharing your news. People who know you, or think they know you, can be dismissive of your diagnosis, and may question its validity. Having seen you at work or having spoken to you before, they doubt that you can really have this. It doesn’t make sense because you have achieved things, you seemed to be coping, and you don’t tick the stereotypical boxes of this little understood condition.
It’s what they haven’t seen though. The struggles to complete even the simplest of tasks, the tears from being overwhelmed, the relentless anxiety, the shutdowns and meltdowns and the constant feeling that you just do not belong.
I think we should congratulate ourselves for getting this far. It has been a rollercoaster ride and while it will continue to be so, our diagnosis means we might be able to flatten out some of the loops and slow things down.
Those who question an adult’s diagnosis because the person does not seem “typically autistic” (whatever that means!) need to be a lot more understanding. I thought it was the autistic people who lack empathy?! (Another myth by the way). The symptoms of autism are exacerbated by certain situations, and it may only be when these situations unfold that our issues become obvious.
On the 27th of April 2003 I found myself at the front of a large crowd in Wolverhampton Civic Hall. I was definitely out of my comfort zone, but was desperate to see my new favourite band. The Vines hail from Sydney and released their debut album Highly Evolved in 2002. Their music owes more than a nod to Nirvana as well as The Beatles and The Who, yet has its own unique sound. They came on stage and the set was loud and chaotic. Frontman Craig Nicholls was in fine form and his performance was captivating with him screaming and jumping across the stage.
Perhaps it seems strange that an autistic man was able to attend such an overly stimulating and frenetic evening? However, I doubt that I was the only autistic music fan there and I know for sure of one other autistic male in the venue - he was on stage! Also born in 1977, Craig Nicholls received a late diagnosis of Asperger’s Syndrome, now referred to as autism, in 2004.
After their first gruelling world tour things started to go wrong for the band as their vocalist repeatedly found himself in the media spotlight for the wrong reasons. He verbally abused the audience, was charged for assaulting a photographer, and, following two out of control sets on Letterman and Jay Leno, made booking the band an unappealing prospect.
The renowned Dr Tony Attwood diagnosed Nicholls and told him that his lifestyle choices, especially when on tour, were probably the worst possible for someone on the spectrum! The constant moving around is unsettling and disruptive, ruining any chance of a routine. The stress and worry of touring plus the bright lights, thousands of new people and a lack of sleep would be detrimental for most people let alone for an autistic person.
Nicholls took the advice on board. He greatly reduced the touring and live gigs, took time out to rest, and gave up smoking marijuana. It was the circumstances of touring which brought his autistic traits to the surface where they could not be hidden no matter how successful he had been at masking in the past.
The Vines (with Nicholls as the only constant member) went on to record seven studio albums with the most recent in 2018. Some of his best music and live performances have been post diagnosis and it is refreshing to see an autistic person achieve success doing what they love while at the same time destroying autistic stereotypes.
Sir Anthony Hopkins (actor), Daryl Hannah (actor), Wentworth Miller (actor), Tim Burton (director), Susan Boyle (singer), Guy Martin (motorcycle racer/TV presenter), Elon Musk (entrepreneur), Alex Reid (MMA fighter), Courtney Love (musician), David Byrne (musician), Satoshi Tajiri (Pokemon creator), Anthony Ianni (basketball player) are just a few autistic celebrities revealed with a quick Google search. Autism does not define.
We hide our autism well (most of the time) and tend to keep ourselves to ourselves. Please don’t judge us. Please don’t query our diagnosis and please don’t expect us to act in a certain way. Do get to know us and listen to us if we feel we can open up. Yes, we share some traits, but we are individuals and our autism is unique for each of us. Thank you.
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