I have read several chapters in books and blog posts concerning the advantages and disadvantages of autistic people telling others about discovering they are autistic. As I mentioned in the first post of this blog I was hoping to wait until I had an official diagnosis before disclosing my autistic status to more than a few people who already knew, but since the process of finding anyone who will give me a formal diagnosis is so difficult and could still take many months (I’m rapidly losing faith – my husband e-mailed the triage service again last week to try to ascertain whether there had been any progress at all and has not yet heard back) I had to go ahead anyway – life was simply too difficult when I was keeping something so big a secret.
But being so open about things is something that has, maybe, been easier for me than it is for some people. And, ironically, that ease is produced because I am both privileged in some ways and disadvantaged in others.
First the privilege. I am a white, well-educated, grown-up person. I am literate enough to be able to write coherently and, when my words are good, I’m confident conversing with a wide range of people. I live in a part of the world that is generally open and tolerant to differences (I really hope it stays that way, although, like many, I fear recent events have altered things somewhat – but that is not a discussion I wish to have here and is only mentioned in passing). I rely only on my husband for a living – he knows everything and isn’t the slightest bit worried about any of it. My family seem to be pretty OK about all of it as far as I can tell, and, to be honest, if they’re not, then that’s their problem and they’ll come round to it all eventually or not. My friends are a pretty open-minded cool bunch, and if any of them do take exception then they weren’t real friends anyway so they can just depart and that’ll be the end of it. So far I haven’t noticed anyone treating me any differently from before, and everyone has either responded positively to what I’ve said or has politely kept their mouth shut or doesn’t care anyway. In starting this blog I did put a certain level of guard up against those who might want to cause havoc – maybe there will be some, but so far I’ve been lucky. I also have supportive people around me who will help if that does become a problem.
And then the disadvantage. I am childless and cannot have children. This means that where some worry about any consequences regarding their children if they tell people that they are autistic, I don’t have to bother. It’s simply a part of my life that doesn’t exist. It is one of the greatest sadnesses of my life that I will never have chance to know what it might be like to live in that sort of happy family situation, but in this particular instance it takes off a whole level of complication. I am also unemployed and have been so for many years. My attempts to sustain work have failed over and over again and I eventually reached a level of sickness where I was signed off from work permanently (I’ll write a post at some point about my working life and how it gradually disintegrated). This is bad news in that having a job and being well enough to work would be wonderful from both a life-fulfilment, and financial point of view, but it does mean that I don’t have to worry about telling a boss or colleagues I am autistic or about whether I will keep my job. I have no professional standing in any world, so I cannot lose it! If I ever do get well enough to consider working again then it will have to be as a fully open autistic person, and I might well need many adaptions to working hours, environment, and so on. Even working from home independently would present a massive challenge for me because my ability to communicate regularly is not great and my executive functioning is absolutely shocking.
It also became apparent after the first assessment that concealing my autistic identity was driving me to the brink of suicide. The effort of concealing my new-found knowledge was killing me. The alternative to any consequences of telling the world I was autistic was possibly ending up dead. At that point, as I’ve mentioned in an earlier blog post, I was stuck between a rock and a hard place and the rock was still on fire and had just exploded out of a volcano – so the hard place it was.
At the moment I am still very envious of those who have already received their formal diagnoses, or those who feel comfortably able to live life as self-diagnosed autistics. I’m also envious of those who didn’t have to wait until they were in their mid-40s to discover who they were, and who could adapt their lives and embrace being autistic before they got as sick as I did. Also those who are now receiving their diagnoses as children, who won’t be told all their lives how badly behaved and lazy they are because they have a label that protects them, and who won’t suddenly get a massive shock when they’re middle aged and burnt out, and won’t spend decades in a psychiatric system being subjected to well-intentioned but sometimes harmful treatments. I’m envious of those who have support services helping them, who have therapists to listen to them, and who have had considerate and helpful diagnosticians and so on. Of course I am – I’m human!
But I have also come across stories of people who are much older than I am before they finally discover who they are. I know there will have been autistic people in the past who struggled with life in the way that I struggle with it and who never had any explanation but simply went to their graves thinking that life was really really hard work and difficult and painful. Some will have had even worse times – maybe locked up as a result of other conditions being misdiagnosed (I’ve found tales online of people locked up until their 80s, filled with unsuitable medication, only finally freed from incarceration and a drugged up haze once their autism was recognized). I weep for their lost lives, and I weep for those who I know existed (I was very nearly one of them – my life could so easily have ended in my late 20s) who killed themselves because their lives were so tough, who never got through the burnouts and the breakdowns, and never even discovered they were autistic and that they needed help and compassion and strategies to cope with living in a hostile world.
And I also come across those who are not able to disclose fully their autistic (or gender) identities to those around them. I read about young people, dependent upon their parents for a roof over their heads, whose parents are in denial and don’t want to support them. I know there are people all over the world who don’t have the privileges I do and who are living lives that are not quite right for them and they have no choice about it for whatever reasons.
And yet again I come to the conclusion that for all the comments I’ve had regarding the bravery and honesty of this blog (there have been, embarrassingly, lots), I’m able to be open and honest and write these words because I am lucky.
And it also makes me particularly glad when they help other people in any way.