As part of the Jo Cox Commission on Loneliness, this month we’re shining a light on disability and loneliness — from negative attitudes, to inaccessible venues. The national charity Sense has released a report, Someone Cares If I’m Not There, exploring why loneliness affects many people with disabilities, including those on the autism spectrum.

This week the campaign is focusing on loneliness and autism, mental health conditions and learning disability. 

Nita, a young woman with Asperger syndrome, is briefly featured in the report. She has kindly shared with us her thoughtful and enlightening full blog post.

Nita's blog

"My name is Nita (Jackson; no relation to autism awareness campaigner Luke). I live in Colchester, and was formally diagnosed with Asperger's syndrome nearly two decades ago at age 15. For me personally, autism is first and foremost a social disability, and I say disability because it does indeed have a disabling effect on my ability to communicate with others. This may not be the case for other high functioning people on the spectrum (indeed, I have met, and know of, many for whom things were far less difficult), but it is the case for me.

Like many people with Asperger's, I'm an introvert, but even introverts need some semblance of a social life. Yet mine remains as elusive, nay, impossible to exist, as Bigfoot travelling by polka-dot unicorn. And it's more than a little frustrating, not to mention lonely, out there in search of Bigfoot travelling by polka-dot unicorn (and there are midges out there. Seriously. Ain't no bug repellant tough enough for those guys).

I wrote in my teenage-diary-turned-published-book Standing Down Falling Up that I felt as if there was a wall separating me from others — a barrier that, although invisible, may as well have been as solid and secure as Fort Knox for all the success I had breaking out of it — and twenty years on, it's no different. I always used to think that, as I grew older, social interaction would would get easier; it didn't. School was a minefield; as was college, and the three universities I attended, and every relationship (platonic and non) outside thereof (work isn't there because, of the hundreds of job applications I've submitted over the years, I've only scored three interviews, none of which materialised into jobs). Despite social skills related literature aplenty, social skills workshops, behavioural courses, and friendships made and invariably lost, I remain isolated; and, whilst I don't blame myself, I know something isn't sinking in, and I wonder why I'm not getting it right.

The fact is, try as I might to make sense of other people (neurotypicals primarily, although I can't say I understand others on the autism spectrum any better), and for whatever reason, they and I just cannot seem to tune into each other's wavelengths. Sometimes, and only with hindsight, I know where I went wrong; more often than not, I don't; but it's knowledge I would welcome readily, and endeavour to learn from. Sometimes I do manage to learn from it; sometimes I don't; but I always want, and try, to. Sometimes the mistake is mine; sometimes it's not...

...and it is this, above everything else, that is the real kicker, because there is only so much I can do. Obviously, I don't know what's going on in the head of Whoever I'm Trying To Communicate With (make that: Whoever I'm Trying Not To End Up Making a Complete Mess of a Situation With), but it at least seems to me that I'm the one making all the effort — and furthermore, that, in their eyes, because I'm the "defective" one (to quote one former classmate), the one with the "problem" (to quote one ex-friend), I'm the only one who should. I could be wrong. But that's how it feels. Although I cannot behave like a neurotypical (I used to think I could, only to discover that I wasn't fooling anyone), or pass for one in any way, shape or form, I work flat out trying to understand them, accomodate them, and behave as best I can in a manner they won't find completely disagreeable. If that sounds like I'm making excuses for myself to behave inappropriately, I am most categorically not — I know my limits, is all.

Even so, it's pretty stressful, given that not only am I hyper conscious of my condition and how my every word, inflection, pause, move and gesture is coming under intense scrutiny by whoever I'm trying to interact with, but also that I am simultaneously trying to scrutinize, assess and modify myself, whilst decoding, scrutinizing and assessing the other party... which is of course compounded if I'm in a crowded place, because then my senses are going haywire attempting to process every little detail around me. Consequently, any prolonged interaction with other people (or should that be Other People? They, from the Big Bad World of the Unknown?) leaves me exhausted and needing to decompress... yet after which, instead of resting, I re-run said interaction in my head and attempt to work out if I did anything wrong and how I could have done it better. It never helps — in fact, it does nothing but deplete my self confidence — but I rarely manage to stop myself doing it all the same.

Socialisation shouldn't be this hard, should it? Having real, true friends shouldn't be this hard either, right? Or am I asking too much of other people? At times, it leaves me considering hermittery, resigning myself to but the barest bones of social interaction... but that's not what I want. I've pretty much accepted lifelong spinsterhood and childlessness, but I need some positive relationships in my life. I need friends. Not paid friends, or people who feel sorry for me; people who accept and like me for, and even despite, who I am. People not to hold my hand, but who would be willing to help teach and instruct me in the Ways of the Neurotypical World nonetheless. I am autistic, but I am no less worthy of friendship than anyone else.

So, has anyone else seen Bigfoot? And was he travelling by polka-dot unicorn?"