Josh Bernard-Cooper explores the impact that mental health issues can have on those with learning disabilities and developmental disorders. His older brother Elliott, who has Asperger’s Syndrome, kindly shares his own perspective and experiences with such issues, as he has to deal with this mental health condition along with heightened anxiety and obsessive compulsive disorder (OCD). This emotionally moving account is a powerful reminder that we must continue raising awareness for those who suffer co-morbid mental health issues.
Just a few miles away from my home, sitting by the side of the road which I used to travel on every morning on my commute to school, is the Bethlem hospital. It is no coincidence that the hospital’s name sounds eerily like “bedlam.” The word, meaning a confused uproar, originated as a bastardisation of the Hospital’s name. Although it now serves as a well-respected psychiatric facility, the hospital was once one of the worst lunatic asylums ever seen. Edward Wakefield, a Quaker advocating lunacy reform, wrote in 1814 about the horrific treatment of patients who were declared “incurable” and kept naked and chained for years on end. Thankfully, in modern times, such places no longer exist in the Western world. Mental health conditions including depression, anxiety and schizophrenia are researched, medicated and understood by the general public. However, it is still easy for some complex, yet common, situations to be overlooked. Mental health issues present new and entirely different challenges for people with learning disabilities and developmental disorders.
A learning disability, as described by the NHS, is a disorder that affects how an individual learns new things, processes information and communicates. Developmental disorders are psychiatric conditions present from childhood that impair an individual in their language, motor skills, social interaction and other areas. Examples include autism spectrum disorders or more broadly, ADHD. My older brother Elliott has Asperger’s Syndrome: an autistic spectrum developmental disorder that causes difficulty with social interaction and non-verbal communication, including reading emotional and body-language cues. I recently spoke to Elliott to share his perspective and experiences with his mental health condition:
“An important thing to note about Asperger’s syndrome and my mental health is that it’s all-pervasive – I was diagnosed with Asperger’s at 10 years old, but I was born with it and will die with it. It can sometimes be difficult to separate the “Asperger’s” effects on my mind from the “mental health” effects, since I will never experience one without the other. However, there are certain things with regards to mental health that Asperger’s syndrome can interact with in unique ways.
Most prominent among these for me are heightened anxiety and obsessive tendencies. Alongside my Asperger’s diagnosis came the diagnosis of a severe anxiety disorder, and symptoms of OCD are present in my Asperger’s diagnosis as well: to the point that it could be said (and has been said in the past) that I have OCD itself. Since Asperger’s syndrome often manifests in the form of heightened anxiety (especially in response to certain situations - often the bigger, more social events) and obsessive, ritualistic tendencies; you can imagine that having these already exacerbated personality traits exacerbated even further is an interesting situation to live in.
While both of these things are prominent in my life, anxiety probably rules the roost. In social situations (a common residing-place for symptoms of conditions on the autistic spectrum), it can be very challenging for me to remain relaxed rather than twitchy or even just “on edge” in some way. Many of my friends probably don’t even notice this, for many reasons – it is partially due to having different friend groups and having various ways to communicate with separate individuals; but it also partially due to who I share this information with and partially due to the fact that I’ve become better at hiding it in certain ways. Even if I’ve managed to hide it - scratch the surface away - and the anxious, obsessive-compulsive inner me reveals himself. If I become worried that I’ve offended or upset someone, or that I’ve been misinterpreted or expressed myself in a way I didn’t intend to, I revert to checking and checking and asking and asking… and probing the situation more deeply until I’m satisfied it has come to a resolution. I check that I’ve apologised if necessary, or clarified that I haven’t upset someone, or made myself clearer. This has a tendency to backfire (not all that uncommonly), since probing into something deeper can often open up new pathways that require probing from myself.
My anxiety in social situations often leads to me fading into the background and becoming a ‘listener-in’ on the conversation taking place. I have described my social energy before as being like, ‘the body’s consumption of protein for energy, once its fat reserves have been drained’ – once I have run out of my social reserves, I start to eat into my head-space, leading to me slowly becoming less and less talkative and more withdrawn. This doesn’t abate in one-on-one situations either, even though they are smaller. Since in these instances, I am unable to fade into the background, and must hold the conversation spotlight all of the time.
Anxiety and OCD manifest outside of social situations too, of course. I can be anxious quite intensely about very trivial things (even small decisions or trying to figure out the next thing I will do for my hobbies in the near future); and even something I’m quite happy to do (like writing this) or be a part of (like the previously-discussed social gatherings with my friends, or events relating to my hobbies) can be causes of anxiety and nervousness for me. OCD for me manifests in tiny rituals that I have to repeat in certain situations. None of them last very long, but the sheer frequency with which I have to repeat these sayings or motions (along with my strict rules for them – they must be applied equally to all that receives them) can certainly be overwhelming. If I mess one up, I must apologise to its recipient - animate or not - and repeat the ritual from the beginning. I often get frustrated at the time that adds up from everything I feel compelled to do, and have some element of embarrassment and shame about them. This embarrassment and shame increases if someone notices a ritual that is not intended for them, or if the ritual is directed at something that cannot understand what I am doing - like a pet or an inanimate object.
I hope this can shed some light on the intersection of Asperger’s syndrome and other mental health conditions, at least in my case. It is very difficult to manage, but through the understanding of those I know, it has become easier and I hope that this article can help others to understand and empathise in the same way. And perhaps my story will make the lives of people they know to have such mental conditions, easier to manage in the same way. Thank you for taking the time to read this!”
It is evident from what Elliott writes that the combination of his developmental disorder with his mental health issues expose him to some unique (and thus difficult to tackle) issues. As mental health issues become more understood by the mainstream through improvements in healthcare and education, it is important not to forget such cases or to divert attention from learning disabilities and developmental disorders. Although it is unlikely that individuals struggling with co-morbid mental health issues and other disorders are going to end up in a place like the early Bethlem, it is important to raise awareness of their struggles and the care we must take to further understand them. If we do not, we risk condemning them not to an asylum, but to our ignorance and its toxic effects.
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