When an individual with Autism Spectrum Disorder (ASD) is diagnosed, the conversation inevitably turns to the scarily named 'comorbidities'. A comorbidity is a condition that co-exists alongside the primary diagnosis. For individuals with ASD, these might be physical (like an increased risk of migraines, epilepsy, or gastrointestinal problems). The most prevalent comorbidities, however, are mental health conditions, and include anxiety and anxiety disorders, OCD (obsessive compulsive disorder), major or clinical depression, ADHD (attention deficit hyperactivity disorder), ODD (oppositional defiance disorder), and bipolar disorder. Statistics vary, but studies suggest that over 70 per cent of autistic individuals suffer from anxiety or depression, and up to three-quarters of children diagnosed with ASD are concurrently diagnosed with at least one, and often many, comorbidities.
There is a question of when ASD stops and a new, co-morbid condition begins.
Undoubtedly, there is a question of when ASD stops and a new, co-morbid condition begins. At what point, for example, does extreme anxiety about social performance stop being an intrinsic part of ASD and begin being Social Anxiety Disorder? At what point does an individual's need to order their world in often idiosyncratic ways become OCD? At what point does a person’s need for movement because of unusual proprioceptive sensory processing, or lack of focus because of an inability to prioritise sensory stimuli, become ADHD?
Regardless of the answer to these questions the undeniable fact is that ASD comes with a heavy risk of mental health complications, and this darker side of autism is one that it poorly understood by the broader community.
When his teacher once asked him what the worst day of his life was, he responded that it was the day he was born.
Research suggests that individuals with ASD are up to 28 times more likely to contemplate or attempt suicide than their neurotypical peers. Autistic individuals without associated learning disabilities are nine times more likely to die from suicide than the neurotypical population. They not only suffer from a significantly greater risk of clinical depression than the non-autistic population, but a recent study suggests that those with autism live on average between 12 and 30 years less (depending on their comorbidities) than those without it. That study also asserts that ‘autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition’. This discrepancy is stark, real, and sobering, especially when we think that premature mortality is not just a matter of statistics: people are dying unnecessarily.
My eldest autistic son first had suicidal ideations when he was five. At six, he began matching actions to his words. By the tender age of seven, he had experienced two periods of clinical depression, and emergence from that depressed state is arduous and slow. He still speaks impassively about feeling so different that his only escape from this world in which he feels he does not belong, is suicide. His mantra, ‘I’m done with this world’, is a matter of fact statement of his reality. When someone asks him what he wants to be when he grows up, he often responds that he doesn’t want to grow up. Not in a jingly Toy-World kind of way, but in an I-don’t-want-to-be-here-when-I-grow-up kind of way. When his teacher once asked him what the worst day of his life was, he responded that it was the day he was born. His ASD might have made him feel different in the first place, but his mental health problems exist outside of (if complicated by) his autism diagnosis.
I can’t really imagine how it must be to live as an exile from the world at any age, or how alienated you must feel to articulate such depth of sadness as my son has.
My son’s story highlights two critical points. Firstly, individuals with ASD and their families regularly have to face mental health issues alongside ASD: ASD is rarely the whole story. And, of course, the impotence of watching your child or children struggle not only with ASD but also with those (often times more debilitating) co-morbidities places substantial stress on parents' (and indeed, siblings') mental health also.
Secondly, labels and stereotypes don't take into account the suffering of someone displaced and alienated by a foreign world in which they are forced to participate. We tend to locate responsibility for how autistic individuals cope in ‘our’ neurotypical world with the autistic individuals themselves (and perhaps with their family). But could you imagine feeling so dislocated in – and by – the world in which you have every right to live peacefully, that you genuinely wish you hadn’t been born? Some of the responsibility for that displacement rests at our door since it is we – broadly speaking – who do not actively find the ways to facilitate acceptance and belonging.
I can’t really imagine how it must be to live as an exile from the world at any age, or how alienated you must feel to articulate such depth of sadness as my son has. I often contemplate what I did (do) wrong, what I could have done better, and what I might do in the future to erase those thoughts from his mind. But the reality is that I can’t do it alone. As much as I can accept and embrace him as a unique, valued and respected autistic person, it is his community that needs to understand him to complete that process of belonging.
Their mental health comorbidities are often far more disabling than the autism itself.
The difficulty, of course, is knowing what we can do to make a difference to those suffering from ASD-related mental health difficulties. What can we do as a society to decrease their anxieties, increase their inclusion, and minimise their depression? What can we do as parents beyond the merry-go-round of psychology, psychiatry, and therapy appointments to which we dutifully take our children in the hopes that they might be taught the skills and resilience to cope in this world into which they have been born?
The answer is not easy, although awareness and acceptance informed by education is clearly key. Certainly, it is a question with which I struggle daily. But not having a ready, implementable answer doesn't mean that the question isn't worth asking of ourselves and each other. At a time when mental health difficulties are rising dramatically not only in our youth, but also in our younger, primary school aged populations, children with ASD are a particularly vulnerable group. As a community we are committed to talking about mental health problems and participating in open, respectful dialogue about mental health. We have a responsibility to include the autistic population in this discussion since for them, their mental health comorbidities are often far more disabling than the autism itself.
Image by John Mueller (Flickr).