Leaving Neverland: Autism and the Peter Pan Myth
For each person leaving childhood as part of the past, there comes our own ‘rite of passage’, or that time when adult maturity is now a certainty which is impossible to shake off. In some cases though, there is a strange attitude, unlike any other disability or condition similar, that autism is an agenda seemingly dominated by the challenges children face. Whether it be through the eyes in the arts and media, like last year’s (enjoyable nonetheless) The A Word and Mark Haddon’s The Curious Incident of the Dog in the Night Time and its highly successful theatre adaptation, or the politics of the condition. Considering policies, it is measures like Education and Healthcare Plans (EHCP) and early intervention support available make autism in children an all easier election sell, as opposed to all the difficulties which come in adulthood.
Let’s at least be clear on one thing: autistic adults are a fact of life. The condition can be managed and mitigated, but there is no escaping our existence in society.
In most of our public discourse, autism stands as a rather unique prism that the agenda is almost overrun with stories of those affected aged 18 or under. Fern Adams, a postgraduate student and also autistic, would agree with this, saying “Mainly because autistic people don’t always get to speak for themselves. People consequently hear from families and parents and so this automatically assumes their children are young.”
The ‘forgotten agenda’, as one way of looking at how autistic people themselves who are of a consenting age and have capacity to contribute in society are ignored in the wider socio-political narrative, results in many of the current inequalities and misunderstandings about autism. This will be explained throughout.
First though, let’s explore what defines an autistic adult, like me, from my child persona:
1. Your View of the World
As a child, I was prone to questioning the fabric of the world I was on, making for some very inexplicable philosophical thinking without knowing any concepts then! Other people around me had little consequence. Some aspects could be regarded in what is commonly viewed as the ‘Truman Show Delusion’. I never minded I was in my own imaginary world as a child, but growing into those bumpy teenage years, by which point I had diagnosis, was denial. Denial that I could fit in just as well with people around me and denial that problems were gradually snowballing, which would just come spilling in a ‘meltdown’. It is only in recent years as I’ve entered the adult phase that acceptance of the condition and a willingness to recognise the world I had to make work in order to get by has become part of my transition. Be that as it may, the real world can be much tougher, and therefore require greater resilience in a space of neurotypicals, than my child imaginary alternative construct…
Georgia Harper, a postgraduate herself on the spectrum, described her own process of moving on. “In the past I’d internalised a lot of the “but you’re so high-functioning” erasure and in many ways the transition to adulthood was a wake-up call that actually I should accept my autism and take my mental health seriously.”
2. Burnout
Many stories out there like to depict the ‘meltdowns’ of autistic children or how in some cases, they are compared to a standard tantrums out of poor fact checking. Like most on the spectrum, the world and its everyday challenges can overwhelm you and an expression of anger or distress can be the only way to escape that unbearable place whatever it might be. For me, that has changed — not quite knowing what had made that switch, but tolerance is now the general mode in such circumstances.
However, in its place, is a consuming feeling of tiredness or not wanting any kind of social contact with people at all and a desire to shut the world out at any cost. As it happens with some very trying train journeys, the last thing I need is to be the centre of attention just as I’m trying to catch my breath again. The mask, like any good actor, does not tend to fall off so easily nowadays, but recharging is almost essential in any case before facing the world for a new day.
On her experience, Fern again reflects “The world is more stressful. As a child if I was anxious or struggling with the world I would switch off, or get frustrated and have a meltdown. I can’t do that so much as an adult even that is what I’m feeling like.”
3. New Opportunities
This is not an immediately tangible or indeed applicable topic, for all autistic adults. In some cases though, we are able to find people who have an inclusive approach to who we are and that not everyone around us poses an immediate risk to our safety! In partnership with denial in teenage years would be a constant sense of doom or pessimism that prevents any foresight into what our potential future might be beyond issues of bullying or other teenage dramas if that time. For some of us, we can become independent and choose those who we want to socialise with, as well as an education that can pave the way towards a brighter future.
Georgia describes to me that “I haven’t had any problems with bullying at uni, unlike in secondary school — I’ve found people to be much more accepting and welcoming and that’s made a huge difference in itself.”
Facing the Truth
As a personal experience, coming to terms with growing up and how that has affected my life is one perspective alone. Whether better or worse, each individual has their own story to tell and just presenting a binary theme of success or failure as autistic adults will do it no justice in the longer term.
The reality, in general, is sometimes bleaker — 16% in full time work, less than 1 in 4 young adults moving into further education and beyond. What it tells us is that the world is just not ready to accommodate autism when they can move away from the family unit and the role of parents diminishes. To have a diagnosis later on in life also, which might feel liberating, can become another struggle in its own nature. Ann Davies-Brown had to have her daughter, Naomi, diagnosed privately at the age of 18. As she explained what happened afterwards, “Our family became heavily involved with social services and they did not believe that Naomi was autistic — and at our first Child Protection meeting I was devastatingly, wrongly accused of pathologising and fabricating illness in our children.”
The following mental health emergency saw Naomi admitted to an Assessment and Treatment Unit and placed into a mixed ward with much older adults than herself. She was fortunate to have had a confirmed diagnosis at the Maudsley Hospital, under the NHS, which Ann says that just being believed in itself is important. As the medical research charity, Autistica found, 80% of us on the spectrum will have some kind of mental health problem in our lives. Naomi herself is in a better place these days and is active in a wide number of charitable causes. Her siblings are also on the path to their own diagnoses.
More seriously though, suicide has been described as the leading cause of death of autistic people alone, without any other diagnosed learning disability, with studies indicating two-thirds of people with Asperger’s Syndrome admitted to a lifetime experience of suicidal thoughts. I would be only untruthful if I claimed these thoughts had never crossed my mind in the past. The death of a friend of mine in this manner, who shared many comparable traits to myself, in 2015 alluded as a warning that living as an adult offers no simple route to the stability and assurance we crave for, when in reality it’s not so easily achieved.
Taking Action
It can only be obvious sometimes why the ‘forgotten agenda’ is a reality to many of us, as much as we want to end the pattern. They are issues that politicians, parents or even ourselves have a straight answer for. For us as adults, it can be easier for employers if we choose to keep our full identities secret and not become a burden for the support needs we are rightfully entitled to.
What becomes though of the adults that cannot lead the ordinary lives that any parent would wish? There’s the never-ending fight with social security, or benefit entitlements, where its own goalposts have narrowed to win that right or the daunting cliff-edge of transitioning from child to adult social care after the first 25 years of someone’s life. In using the fundraising argument, it is harder for members of the public to pity and take notice of the fact problems hardly ever end at childhood. Fern, when considering this topic, succinctly observed “People find it easier to care when it is someone who is younger.”
For people like me, and others who can be a voice to challenge the dominant agenda as it stands, we can learn a few tricks from the disability rights movement in recent decades. In no particular order, they are:
1. Wear your autism with pride: It’s time people learnt how brilliant and diverse this community is. If someone tells you’re ‘weird’ or some other kind of comment as a slur, just counter that with ‘and what does that make you?’ We might stand for ignorance in children, but show no sympathy for adults who need to know better. Make your employer too realise your own worth and support you’re entitled to.
2. P**s on pity: That’s right — like the old popular mantra use to say for disabled campaigners, it is time to call out how we are portrayed by the media and their language. We do not ‘suffer’ as autistic people — we live. Our condition is not a mental health problem — it is caused by insubstantial, outmoded theories that some misguided individuals still like to peddle. The only reason we suffer is because of ignorance around us, pure and simple. There are many families and those with the condition who are in difficult circumstances, but pity is no good for their lives when political will and genuine understanding of another person’s life is what’s needed.
3. Keep talking: When it might be your own story living as an autistic adult or helping others who may not have a voice, we need to frame the discussion as we would like it to be and for autism to belong to us all, not simply as a child-related problem that loses its appeal/potency by ageing. It is tough, but society has not fixed its approach, so we need to continue making that case for awareness and investment in the issue.
To close now with the words of Ann, who explained why this debate is worth the time and effort:
When you’ve met one autistic adult, you’ve met one autistic adult; [we’re] all so different and personality always shines through first. Throw away the textbook and your stereotypical thinking, but at the same time get educated in how diverse and rewarding getting to know our wonderful community can be.
