But on reading her words, it occurred to me that we autistics must also experience soul loss. Think on it. We are routinely denied a full and true expression of our autistic selves. Autistic children frequently have their stims and other openly autistic behaviours suppressed, often ruthlessly. Even as adults, our mannerisms are often made fun of. Both as children and as adults, we are forced into the straitjacket of 'normality', and are robbed of any authentic sense of self as autistics. Not to mention that almost daily, we hear the messages that autistics are terrible in one way or another. Words like 'epidemic', 'stolen', 'tragedy', 'brain-damaged', etc, are used to describe us. The media regularly publish or broadcast articles and news items that, whatever their actual words, almost always convey a message of fear and loathing for the 'modern scourge' we represent, usually with a heaping of sympathy for the 'poor parents' who have to 'put up' with us. Professionals regularly release news that they have found yet another possible 'cause' of autism, and/or discuss us using the language of pathology and disease, all the results of their research being structured so that we are the ones with the 'lack' of something 'normal' people have. Commonly repeated ideas of autistics include that we lack any empathy or sensitivity, that we 'don't want' the company of others, and are incapable of love. Or that we are lacking in intelligence and awareness (if classic or 'Kanner's' autistic), or are all computer nerds and hackers, if Aspergers.
We are put through 'treatments' that would be considered abuse if done to anyone not autistic, incarcerated, or abused outright (that is, without even the excuse of 'treatment'), and even murdered, for the 'crime' of being autistic. And even if our abusers and murderers are brought to justice, they either get off with the proverbial slap on the wrist, or all the sympathy is for them, not us. We are laughed and jeered at, isolated and rejected, yelled at and criticised, bullied and told in a million small and large ways that we are worthless or inferior in one way or another. We are, even now, after years of autistic activism, routinely not consulted, even as adults, on what we want, and often not included in running autism organisations that supposedly are 'for' us. In short, we are treated as if we're not quite human, not entitled to even the most basic of human rights, fit only to be 'treated' and 'managed' by the 'real' humans, and ultimately to be eliminated.
So why wouldn't we experience 'soul loss'? How, really, could we avoid it? Over and over again, I hear/see autistics talking of their pain, their confusion, their floundering through the world, their feeling of 'lack' or 'wrongness', their struggle to achieve some sense of self-esteem or even self-coherence. They daily dump on themselves, wonder if they'll ever 'get it right', hate themselves for not being able to do what 'everyone else' can do with such ease, for having to struggle so hard with just about everything in life. Sometimes they believe the negative stereotypes for lack of any better information, but just as frequently it seems the state of their lives, their lack of a coherent sense of self or even a sense of purpose, is to blame. For many of us, private tears and shame are an almost daily experience. I have seen so many autistic individuals broken by their experience of life, wondering why they should even bother to continue, or trying to 'fill those gaps' in one way or another.
The only way I've seen this even begin to be overcome is by these individuals meeting and talking (even just online) with other autistics with a more positive view of themselves and of being autistic. Not everyone needs to be some hot-shot autism activist or advocate, but we can all extend a hand of sympathy, and frequently do. I have seen autistics come into groups flagellating themselves, and within a relatively short while, having experienced the help and support and understanding of others, they move towards a more positive outlook, or at least stop whipping themselves so damn hard. Even those who've been part of that support and community for ages can be in need of reinforcement when life assaults them particularly badly, as it does to all of us now and again. Community is not the whole answer of course, but it's a very important beginning. I firmly believe that it's only by way of our autistic communities that we can reclaim those bits of our true selves shattered by 'soul loss', and begin to heal.