Interview by Philip Wylie, 16 November 2012
Not many people on the autism spectrum are as successful as Michael John Carley, who discovered his Asperger’s syndrome (AS) while on holiday in Mexico in 2000. Michael’s diagnosis at the age of 36 came shortly after he became aware of his son’s AS condition. Since then, Michael has immersed himself fully in the Asperger’s world, founding the New York-based not-for-profit Global and Regional Asperger Syndrome Partnership, abbreviated as ‘GRASP’.
The autism community has moved a long way since the condition began to be recognised and publicised, thanks to organisations such as GRASP. Michael comments, ‘We have done an astounding job at making the world a much more behaviorally permissive place, without which there would be no ‘anti-bullying campaigns’ or tolerance of behavioral pluralism today.’
‘When I was a kid it was totally okay for the hero in the movie to push the Weird Guy around’, says Michael. ‘Later, the Weird Guy was the hero’s ‘tolerated sidekick’; then the Weird Guy became the respected sidekick of the hero. Now, the Weird Guy gets his own movie because cerebral activity – such as solving Fermat’s Theorem – brings sexiness, like something you would see in a James Bond action movie.’
In 2001, shortly after his own diagnosis, Michael took over the Adult Asperger Syndrome Support Group of New York, which grew from a membership of just 13 to more than 300 in two years. In 2003, GRASP was formed from a generous grant and fellowship provided by the FAR Fund, based at the Fund for Social Change in New York City. Now GRASP’s chapter organisation provides 27 facilitated support groups for people on the autism spectrum across America and Canada.
As executive director of GRASP, Michael quips that its membership is severely ‘economically challenged’. An estimated 80–85 per cent of autistic people do not work and GRASP members therefore lack disposable income. So, it is a great achievement that the organisation is still growing and empowers a membership of more than 8,000.
GRASP’s sister organisation, the Asperger Syndrome Training and Employment Partnership (ASTEP), provides training and consultancy for employers and educates them about the benefits and limitations of employing people on the autism spectrum. Certainly, the Obama administration has served ASTEP’s interests by introducing legislation that requires 7 per cent of Federal contractors’ payroll to be allocated to disabled people. Michael’s response is, ‘Awesome! But unrealistic.’
Michael vividly remembers the moment when he realised that he had Asperger’s syndrome. He was taking a surfing holiday in Cabo, Mexico, and one evening, against his nature, visited a nightclub. Michael’s book, Asperger’s from the Inside Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome, describes this moment: ‘As the doors opened, I was jolted by the sudden acceleration of volume, and by the sight of hundreds of people, mostly young, swaying, gyrating, sweating, and drinking recklessly on multiple floors.’
It was during this moment of sensory overload in the Cabo nightclub that Michael realised with absolute certainty that he had Asperger’s syndrome. The visual freeze-frame of hundreds of twenty-to-thirty-something party revellers, all moving to pulsating bass tones, is etched on his brain. This milestone was a turning point in Michael’s life and within a month he had received a formal medical diagnosis of his AS condition.
That ‘eurekamoment’ in Cabo was essentially exciting for Michael because he knew that he was onto something big. Already an avid reader, he threw himself wholeheartedly into researching his new Asperger’s syndrome identity. Later, after starting GRASP, he would listen to hundreds of unique stories of other people diagnosed relatively late in their lives.
Michael describes a typical scenario of how older people are initially identified as having Asperger’s syndrome. ‘Sally works on a farm and one day she reads a magazine article about Asperger’s syndrome; then suddenly she gets the insight: “Hey, that’s bachelor Uncle Fred!”’ Thanks to the not-for-profits – GRASP, Autism Speaks and The Autism Society of America – an article about autism is published every four minutes in America, enabling more of the undiagnosed population to gain an insight into their condition.
Unfortunately, not all societies are as well informed as America. In some cultures, Asperger’s can even be a life-threatening condition – for example, when the tribal chief pronounces that the individual is possessed by evil spirits and must be killed. With time, these informative articles about autism will literally save lives.
‘There are going to be times of depression after receiving a positive diagnosis of AS, but the overwhelming effect of the self-realization process should be positive’, says Michael. After his own diagnosis, Michael realised that it was wiring in his brain that caused his quirky behaviour, not his character. Instead of carrying on pretending to be normal, or ‘neurotypical’, this valuable self-knowledge enabled him to access various toolboxes (both on- and off-line) to validate his condition. Maintaining a pretence of normality can often be disempowering.
Although the Cabo nightclub experience was Michael’s ‘tipping point’ during his journey of self-realisation, he believes he has progressed through many different levels of personal awareness. As he collected more information about Asperger’s syndrome, he became clearer and more confident about his condition.
On the other hand, self-awareness of Asperger’s syndrome can make us feel lumped into ‘a cold stigmatizing mark of something broken’, says Michael. These inhumane and intolerant social stigmas can be extremely damaging for the individuals concerned and for society too. However, Michael believes that the positives of diagnosis greatly outweigh the negatives. For example, he now realizes that he processes information differently from most other family members.
Michael refers to his previous job as ‘minor-league diplomat’ for America, and luckily it involved meeting people who perceived his eccentricities positively. This is not the case in many professional and commercial organisations, but in Michael’s ‘stupid day-job’, which he loved, people would say, ‘He’s like that because he’s very talented’ or, ‘He’s very smart.’ Discovering that AS explained his quirky behaviour, he says he realised that ‘I wasn’t that smart after all!’
Michael is very modest about his evolutionary path to self-acceptance, believing it is unimpressive compared with the journeys that many of GRASP’s members have made. He also believes that he was lucky in his choice of career and the people he met along the way.
Success is relative, according to Michael, who believes that we should not judge a person by the cards they are dealt, but by how well they play those cards. The baseline for measuring success is your position in life on the day of diagnosis because that is the first day of the rest of your life!
When Michael attended his first autism support group, he found himself in the company of people who were ‘significantly more affected’ than he was. Initially petrified by the group, he began to notice the exaggerated gestures of group members compared with his own nervous mannerisms, which had been pointed out to him during his childhood.
It is generally more difficult and expensive to provide a diagnosis for adults than for children. This is particularly so if there is no contact with parents or other relatives because there is then less evidence available to confirm the genetic path of autism in the family.
Also, though, Michael says that many adults who are assessed later in life for Asperger’s may – through prolonged pain and struggle – have learned to overcome some of the ‘differences’ that are listed on the diagnostic clinician’s checklist. For example, some actively learn to look other people directly in the eye, perhaps after critical comments from peers or family members.
After Michael’s formal diagnosis, his anticipated relief at having such a weight lifted from his shoulders suddenly disappeared. He remembers standing on the sidewalk experiencing a barrage of negative thoughts and describes these moments of sadness in his book:
In that moment of diagnosis, the euphoria I’d predicted and started to feel was quickly metamorphosing into a fast – moving hurricane of negativity – a monumental sadness with the realization that, “Yes, you were all alone your whole life! You do not belong in the same category as these other people! You do not have that sense of shared experience … with anyone!”’
However, Michael, who has always had a strong sense of self-worth, did not remain in that dark place for long. Typically, post-diagnostic depression lasts between two and six months, but Michael’s experience was much smoother than most.
Regardless of the painful emotional reactions and the need to cope with toxic stigmas, Michael is a brazen advocate of formal diagnosis and Aspergian pride. He says, ‘What is truly overwhelming is the flood of new information the diagnosis brings – the new interpretations not only about yourself, but also about the people around you. This is not bad news – this is good news. Maybe the best you’ve ever had.’
Although Michael’s identity crisis was milder than most, it is worth noting that he actively decided to face himself in the mirror – at least partly for the sake of his young son. Surely, having a father who is willing to share a potentially confusing and traumatic journey is the greatest gift an autistic son could receive? Michael’s son was never alone with exploring his condition because father and son took the journey together.
When asked how many fathers of autistic sons are willing to be assessed for the same condition, Michael estimates about 40 per cent. The remaining 60 per cent may or may not understand the condition and be capable of supporting their child through it, but they prefer not to identify with Asperger’s syndrome personally.
Denial of autism by parents and other relatives is common because the condition is genetically inherited and because it is potentially embarrassing, provoking stigmas that are unjust and downright mean. Most of Michael’s family did not want him to seek a diagnosis, and some wanted him to keep the outcome a secret. Michael says, ‘We have to remember that, because of the genetics involved, and because of the new interpretations of the past that will have to be explored, we are not the only ones affected by our diagnosis.’
Michael followed the guidance of autism authors, Dawn Prince-Hughes and Liane Holliday Willey, to maintain a post-diagnosis journal. For four and a half months, he recorded his experiences in a private diary, noting all the changes he went through and the important insights he experienced along the way.
Another way to assist the post-diagnostic healing process is to attend a local autism support group. These groups – such as the ones organised by GRASP – enable adults on the spectrum to share their experiences with one another. However, be warned that group members are highly disparate individuals offering a diverse spectrum of fertile viewpoints!
Very few people with Asperger’s venture far from home, but there are massive benefits of living in a foreign culture. Michael comments, ‘Very often our differences are not looked upon with so much disdain in another culture. ‘He’s a foreigner! That’s why he is different!’ they say. So, you are given more of a ‘behavioral pass’ in another culture.’ One way to escape the negative judgements that arise from bigotry and ignorant stigmas is therefore to live overseas.
Accepting a new identity (or self-image) inevitably involves a crisis and a period of healing until we have fully accepted the change. Michael embraced this challenge wholeheartedly and changed his job from minor-league diplomat to high-level ambassador of an international not-for-profit organisation that represents over one per cent of the global population. His background in diplomacy and as a playwright enabled him to hone his presentation skills and become an articulate spokesperson for the autism community at large. He is passionately devoted to helping autistic individuals accept their differences and ultimately to breaking down all social barriers between autistic and neurotypical people.