Understanding & accommodating the neurodiverse – everyone’s responsibility

I have social anxiety, and for most of my life this made me believe there was something wrong me. This perception of being inherently flawed brought with it the feeling that it was important for me to push myself so that I would conform and be accepted.

Very often, society expected me to do things which made me uncomfortable, which were stress-inducing and unpleasant, and I was convinced that I had to do those things because that is what it took to be “normal”. After all, I would think, it was my fault that these things were hard for me, not anybody else’s.

It never occurred to me that maybe the society I lived in owed something to me as well; that maybe, as a human being, I deserved enough respect and compassion from the people, institutions and organisations I was associated with for them to make an effort to understand my needs, and make adjustments to facilitate my mental wellbeing.

When I eventually realised that I had a known and fairly common mental health condition, it helped me improve my life in many ways. It allowed me to feel part of a larger community of people whose struggle was similar to mine, to find online resources to understand my condition better, and learn to stop blaming myself when I messed up or couldn’t manage the things expected of me. But, even now, what seemed most important was the responsibility I had towards my condition. It was I who needed to learn to manage my anxiety, to seek out professional help, to stop negative self-talk, to practice self-care, because numerous mental health related websites told me that social anxiety is “very treatable”.

Treatable it may very well be, but all of this talk around social anxiety and its management made it seem like this was solely a problem of the individual, and had no connection with the society we live in.

It did not at any point emphasise the collective responsibility members of society have towards people dealing with mental health issues. It did not, for example, make me question if it was fair for me to be expected to put myself through the kind of levels of stress at my workplace which no regular person would ever be subjected to on a day to day basis, or if it was fair for family members to pressurise me into doing things which were no big deal for them, but were difficult for me.

The first time I realised that greater societal support and understanding in all aspects of my life was a valid expectation to have was when I read a thought-provoking article by Liz Kessler about how social movements can be more inclusive of neurodiversity. The article talked about the importance of seeking informed consent before assigning tasks, of using diverse forms of communication, of allowing frequent breaks during potentially stressful events like meetings and conferences, of making space for emotional expression, of listening to neurodivergent people and taking them seriously.

The idea that any group or organisation I was part of should be expected to make space for me in this way was a truly radical idea – which also made a whole lot of sense.

This article was also the first time I came across the terminology associated with the the idea of neurodiversity.

Neurodiversity refers to the diversity found in the functioning of human minds. Given the genetic and environmental diversity of the human species, the ways in which human minds work are also immensely diverse. Human neurocognitive functioning can be said to form a spectrum of sorts, in which no two people lie on exactly the same point. ‘Neurotypical’ people are those who lie within a section of the spectrum whose boundaries are defined by dominant notions of how a normal mind works, and within which most human beings lie. However, a large number of people do not lie within this range. These people may have a mental illness or disorder, or be disabled, or cognitively non-conformant in any other way. All such people are collectively referred to as ‘neurodivergent’.

Neurodiversity has been understood in different ways by different people. It is often associated with an emphasis on not pathologising cognitive conditions which are innate, and focusing on accommodation rather than cure. I find some aspects of this thinking problematic, as I know that a lot of people with conditions which could be considered innate have benefitted immensely from therapeutic and medical treatments, and I believe such people should have as much autonomy as possible in deciding if they want to seek such treatments. But what is important to realise is that treatment and accommodation are not opposing concepts, but can complement each other to improve the lives of neurodivergent people.

For me, the most valuable contribution the idea of neurodiversity has made is to introduce a new set of terms which allow us to think about mental health issues in a more radical way – which is what Kessler does so effectively in her piece. The great thing about the term neurodivergent is that it clubs together people, who inspite of dealing with diverse conditions in different ways, face many similar obstacles and challenges in their day to day lives.

What all neurodivergent people have in common is that how their minds work make them vulnerable to abuse, discrimination and marginalisation in a world which has little space for people who do not conform.

Such people find it hard to talk about their condition openly because of the stigma attached with any kind of neurodivergence, they find it difficult to find and hold down a job as employers rarely understand their struggles, they are labelled as lazy or unmotivated or stupid or weird or crazy, they are not given the kind of time and space they need to take proper care of themselves.

In short, they are expected to function exactly like neurotypical people and blamed for it if they don’t.

Even if the people around them know about their mental health issues, the assumption is that neurodivergent people need to seek professional help and get cured. As a result, not enough thought is given to how attitudinal and systemic changes could help such people live better lives, irrespective of whether or not they will eventually overcome their condition.

The fact is that even when a cure is possible and readily accessible, it generally takes a long time and a lot of effort. For most neurodivergent people, the primary challenge is to manage their condition in a way which allows them to live happier lives in the present. But the obstacles to a happier life do not come only from within. External factors related to societal stigma, ignorance and insensitivity, such as those mentioned earlier, play a huge role in reducing the quality of life of neurodivergent people.

It is important to remember that how neurodivergent people define themselves and deal with their condition – whether they see it as a disorder or an illness or something intrinsic to their personality or in any other way, whether or not they have access to and choose to undergo treatment, and the amount effort they are able to or choose to put in to such a treatment – are all irrelevant to the necessity for groups, institutions and organisations to make themselves more conducive to the needs of such people.

The idea of neurodiversity also presents us with the exciting possibility of neurodivergent people working together to build a community which can provide mutual support, reach out to neurodivergent people from marginalised sections of society, articulate its rights as an underprivileged group in a society which favours neurotypicality, demand more favourable conditions in classrooms and workplaces, educate people about the challenges of being neurodivergent, and disseminate information which can help organisations promote neurodiversity.

After all, in a wiser and more compassionate world neurodiversity would be something to aspire to in any sphere of human activity. Our world would be a richer place if we had different kinds of neurodivergent people as more active participants in public life, so that society could benefit from their talents and expertise, and learn from their experiences.

The term neurodivergent has the potential to play a role similar to the one the umbrella term ‘LGBTQ’ has played for people who are sexuality and gender non-conformant. The LGBTQ movement has made many gains in ending stigma and discrimination and bringing LGBTQ people into the mainstream. A neurodiversity movement could do the same for the neurodivergent.

It is time we changed the way we talk about mental health, especially in the context of the rights of neurodivergent people in public life. We need to make people realise that neurodiversity is a human reality, and the inclusion of neurodivergent people in all walks of life is a goal worth striving for.

 

4 comments

  1. Thank you Surabhi for speaking up! being courageous and vulnerable..

    As a neuro-divergent on the higher side of the scale i resonate with a lot of what you have shared. i think it was about 8 years ago that i read/heard about HSPs(highly sensitive people) and Empaths and it gave me much validation, strength and understanding.I feel similarly moved by neurodiversity.. specially Karla Mclarens experience/writing/understanding(http://karlamclaren.com/empaths-on-the-autism-spectrum-part-1/) of neurodiversity.. it totally turns the the tables!(you’ll see what i mean)

    I struggle with ‘feeling’ too much and picking up on other peoples emotions. I often feel anxious/unsafe among people specially when i am struggling with boundaries. Sometimes its difficult to relate and engage with the world around me .. often resulting in a struggle with a sense of self and hence boundaries.. I feel ‘ok’ to be who i am, i don’t wish to numb myself or to participate in bizzare, self delusional, confused neurotypical behavior.

    I sense more and more people numbing their hearts and barely conscious of how they are feeling. . this head heart in-congruence i understand is one of the major contributors to an increase of violence and of mental illness. (https://www.youtube.com/watch?v=SsI-P2utUxY – Jane Fonda explains it so elegantly in this two minute video.)

    here is what Karla Mclaren writes about neurotypicals – (http://karlamclaren.com/empaths-on-the-autism-spectrum-part-1/ – its a well written piece, she also touches on Mind-blindness of everyday people and neurotypical privilege)

    “Neurotypicals are frustrating and emotionally incomprehensible. Here’s why:

    The following are normal everyday behaviors among neurotypicals: lying about their feelings; avoiding sensitive subjects that are glaringly obvious; leaving important words unsaid; pretending to like things they don’t like; pretending they’re not feeling an emotion that they’re clearly feeling; using language to hide, obscure, and skirt crucial issues; attacking people who frighten them without ever realizing they’re full of fear; stopping all forward progress on a project without ever realizing they’re full of anger and grief; and claiming that they are being rational when huge steamy clouds of emotion are pouring out of them.

    Neurotypicals are often emotionally exhausting.

    And here’s the big ugly secret: neurotypical behavior isn’t empathic — in fact, it’s often counter-empathic and filled with noise, static, emotional
    absurdity, and confusion. This “normal” social behavior — this insensitive and emotionally incongruent behavior — is only deemed normal because neurotypicals agree that it is. neurotypical social behavior isn’t objectively correct or better than any other way …. in fact, neurotypical functioning is tremendously problematic, and as I wrote above, it is often deeply unempathic as well.”

    Noteworthy – Karlas experience as a neurodiverse empath.

    “I agree. Humans are very problematic both emotionally and empathically. As a young empath growing up, I had to learn how to connect the emotions people were clearly feeling with the lies they told about those emotions, with the repressive techniques they used to quash their emotions, and with the ways that they used other emotions to mask the ones they were truly feeling.

    Before I learned how to identify, categorize, and create separations between myself and the wildly incoherent emotional behaviors of neurotypicals, I was on fire most of the time. Neurotypicals often let their emotions careen around like pinballs, and with some people, you can almost feel mismanaged and disowned emotions coming off of them like puffs of steam. Before I learned how to make sense of neurotypical emotional functioning, I reacted badly to the chaos. I was hyperactive. I withdrew. I lashed out with anger. I felt tremendous anxiety, and I used a lot of physical movement — especially with my hands — to manage my nervousness and confusion (I was stimming!).”

    signing off,
    a proud neurodivergent!
    saud

    p.s. i’ve been wanting to write/blog about the above for a while. struggled with getting down to it. coming across your post was the push i needed 🙂 hope to turn the above into an independent piece.

  2. Hi Saud! Thanks a lot for that insightful comment, and for sharing your experiences. I was not familiar with Karla Mclaren’s writing; from what I have read so far, it is really interesting. It’s true, neurotypicality isn’t all it’s often cracked up to be. The only reason neurotypical behaviour is considered normal is because neurotypicals form the majority of humanity, otherwise there’s nothing about the neurotypical brain which makes it fundamentally better than a neurodivergent brain. If only someone had told me that when I was growing up! Well, do let me know when you complete that article/blog post you mentioned, I would love to read it 🙂

  3. Members of every community and leaders in every movement disagree with each other at times, and I cannot pretend that the neurodiversity movement speaks with one voice. Yet many common themes emerge from the neurodiversity movement. Below I explore how lessons from autistic self-advocates may affect how we approach our autistic patients and their families.

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