Not all disabilities are visible

Disclosure and disability

A few weeks ago, I was asked a question from a newly-diagnosed autistic friend, about how and when to disclose the diagnosis to people, and how it went. I thought my answer might be useful and interesting to other people….

Firstly, it’s a lot like coming out, which is something I have a lot of experience of. Your closest circle can respond in unpredictable ways. For many people, hearing you have a neurodivergent diagnosis challenges their conception of who you are. They often respond by asking you if it really matters, or cautioning you not to be too attached to labels.

But there are other responses that are challenging in one of two ways. Firstly, you have the people who say ‘You don’t seem autistic to me’, which says a lot about either their understanding of autism, or how much you might mask your autism around them. And second, there are the people who say ‘Well, everyone’s a little bit on the spectrum, aren’t they?’ And I think in those cases, your diagnosis challenges their conceptions of themselves. Perhaps they have similar tendencies that they don’t want to think about more deeply.

These responses are important to pay attention to because the reality is there is a huge pool of undiagnosed people, and we tend to cluster. Your diagnosis can provoke others to consider a diagnosis for the first time, particularly those who are genetically related to you.

So when I am describing what I experience as an enlightening and empowering piece of the puzzle of my own self-understanding, but I realise it might be challenging to a loved one’s ideas of themself, often I back out of the conversation. It’s really not my place to push people down a path that they might never be ready to explore, and might not be useful for them to do so.

On the other hand, when people tell me ‘You don’t look autistic’, I tend not to challenge that either. It tells me that I don’t feel comfortable enough around them to unmask, and that isn’t uncomfortable because I’m so used to masking, but it does mean they’re probably not my first choice for people to explore my autistic identity with. As someone who lived a long time without a diagnosis, masking is something I do intuitively, and most often when I don’t quite feel ‘safe’ to be someone’s weirdest friend. I associate masking with being ‘grown up’ and ‘professional’, and I thought everyone had to learn to do it. I’m still not sure what an unmasked, adult me really looks like when I’m not goofing off with friends or being intimate with my loved ones.

But I think what the original question is really asking is this: Am I being too honest about my neurodivergence with the people around me?

And that made me smile, because obviously, that’s such an autistic tendency: to not do small talk, but only deep talk, and not to know how much of that is socially appropriate. And my answer, this answer is from one autistic person to other autistic people, and so equally deep and self-reflective.

As a result, the question for all of us is, are we being too honest for neurotypical people? Are we making them uncomfortable? Probably. But disclosing is a part of being authentically oneself, or as the hashtag goes: #ActuallyAutistic. And I think that kind of authentic honesty is part of the unmasking. It says: I’m going to be honest about who I am, perhaps for the first time in my life, and it might cause issues. But unmasking is important to me, even if it’s difficult to figure out when it\’s comfortable and when it\’s appropriate to do so within social rules set by the neurotypical majority.

Behind this apparently simple question from one recently diagnosed disabled person to another, therefore, lies a lot of what it means and what it takes to become authentically oneself as a neurodivergent person.

On a practical level, just as I have advised many a teenager to be careful about coming out to their families while they still depend on them for a place of safety, I’m careful disclosing about my disability with people that I’m in any kind of a transactional relationship with, because some people do treat you differently as a result. That means being careful with colleagues, with HR departments, and even with doctors.

Recently, I’ve changed my title on my medical records from Ms to Dr, because I’m allowed to, but also because whilst these diagnoses are not officially on my NHS records, sometimes doctors do need to know about them if it is implicated in my care. And given the way autistic people are often treated, it’s actually really important that they consider me to be a “high functioning” autistic person rather than someone with high support needs.

As much as I disagree with the labelling of high and low functioning, I know I am likely to get better treatment and more dignity and agency accorded to me when my disclosure is implicitly accompanied by the reminder that I don’t have an intellectual disability.

We might hope that having an intellectual disability would afford you more care, more time, more consideration and compassion. Sadly, it often doesn’t. Reassuring medical professionals that I am academically bright might actually save my life one day.

As my newest consultant and I discussed just yesterday, in the Rheumatology department of RUH Bath, most medical professionals have barely begun to consider the non-psychological, non-social impacts of neurodiversity. ‘Treatment’ for autism, ADHD, and similar conditions mostly still consists of basic social skills training that most of us have already learnt. Unsurprisingly, such therapies, along with speech development, self-regulation toolkits and the like, are aimed squarely at children. There is little to no support available to neurodivergent adults beyond a few medications for ADHD that improve concentration.

Those medications can be life-changing, but what remains understudied and under-treated, are the very real impacts on our physical health and wellbeing, not just of neurological differences, but of decades spent living inauthentic lives, and sublimating our sensory pain and distress.

Personally, after experiencing a serious sensory burn out at the start of the pandemic, I now have three diagnoses, each of which qualify as a disability on their own: for autism, for ADHD, and most recently for auto-immune issues (like many of such diagnoses, it’s complicated to say which as yet).

Now whilst those diagnoses clustered together might seem alarming, it’s important to remember that I’ve probably had these conditions either since birth, or for a number of years, all without help or support. Diagnosis marks the start of a journey to self-acceptance, to greater self-understanding and to more effective care. I’m hoping that I’ll soon be back in a place of sustainable health, where I have limitations, but minimal pain and distress.

But it’s also worth reflecting how common auto-immune and similar chronic conditions are for neurodivergent people, and how much that tendency to chronic health conditions might be linked to a lifelong, low level, neurological overload. As many people have pointed out, we simply do not know what a non-traumatised neurodivergent population would look like, and while a lot of money is raised to genetically erase us from existence, very little is spent supporting us to healthy aging.

At the root of that question ‘do I disclose or not?’ is yet another, deeper and darker thread to pull. It shows us how society uses the labelling of diagnosis to separate and thus disable difference, while even the therapeutic ‘care’ offered, can often increase the possibility of burnout, and further disability.

I hope this goes some way to explaining why some might shy from the diagnosis journey, while others will cling to it as a lifeline, and that neither can tell you much about how well a person is coping, nor how disabled they might be, and why.

I am very, very tired
Scroll to Top