I can’t just say “I’m autistic”. I have no diagnosis (I am.) (Update: diagnosis received April 2019) but even if I did, I could not just say it. When I upset people, I can’t just say it. When people react in ways that I do not understand, I cannot just say it. When I am sobbing in my kitchen, my children screaming at my feet because mummy is sad, I cannot just say it.
When I feel passionately about something, when I cannot stop talking, digging deeper, making things worse, not better, I cannot just say it.
When friends feel angry, alienated, attacked, I cannot just say it. Because it will fall as an excuse. There is no way to make it anything other than an excuse. I am an articulate adult who is responsible for her words and actions. There are many who would not acknowledge a disability at all. And I do not think I want them to. I am responsible for my own words and actions. I am bright and aware and there is no way to reconcile my intelligence with a lack of understanding or control.
Even I can see it. I can see that I should have realised. I can see that the words “But I am autistic” will sound childish and dismissive and palliating. I get caught up. I cannot let things lie. I argue to the death. I must have the last word. I seem arrogant and blinkered, unwilling to listen. I know what the other side looks like. But here is the problem – it does not feel like that on my side. On my side, my feelings are overwhelming. On my side, I feel so strongly, I must get them out. More than that, I cannot rest. I must explain. If I explain, people will get me. If I explain, people will appreciate my point of view. I must lay myself bare. Every thought, every feeling must come out – like an exorcism. The only way to feel safe, to feel better, is for everything to come out. There is no filter, no way to just cease.
There is never any ill will. In fact, there are usually not even any strong feelings directed at those on the other side. It is all inherently insular, inherently selfish. I see the flaw there, too. I know that living in such an internal world will never be a way to make people truly see me. It is always all about me. But I cannot stop.
People will see me how they see me. They will think me aggressive,
And I cannot say it. I cannot say “I am autistic.” Because what can that really do? What can it really excuse? There is no way forward.
I do not think that I am those things though. I am not even really selfish in a practical sense – just insular. Looking after others is something that I worry about, all the time.
I think I am kind. I think I hold grudges and abandon them in a flicker of a heartbeat. I never want to hurt anyone. I always want to fix things. Even when I am confused, wounded, I will always care. Even if you disagree with me, I will always care. I care about almost everyone. I cannot stand people thinking badly of me, even when I know there is no way to be everyone’s friend. I care what people think, I care about how they feel, I care about what I can do to make them feel better.
All the time.
Even this, now, is me not shutting up. This is me incapable of knowing when I should just shut up. This is me baring all to make it better, even when it is the opposite of what might help. But over and over again, it happens – a Groundhog Day that I cannot learn from.
And I cannot just say “I am autistic.”
For the record, I am not saying that autism is inherently selfish – the opposite in fact. It will always risk being viewed as such by neurotypical people, even subconsciously, because it is almost impossible to imagine the world as we experience it. Autism is the reason that I view things differently, and it is the reason that I cannot let things go – it simply is. This post is just about expressing the frustration that it is so difficult to reconcile the two viewpoints.
I found this fascinating as I recognised so much. I feel sure I have BPD which appears to have similarities/overlap.
Thank you for reading. I did not know much about BPD but having looked into it I can definitely see the similarities.
Lovely lady, this is ridiculously insightful, and you should be proud for being able to acknowledge what you’ve written. You’ve essentially described my Polly, and countless other people I’ve known over the years. Much love, Danielle. Try not to be too hard on yourself xx
Thank you. I am not sure whether knowing myself so well might actually make me feel worse. I feel pretty powerless to change things sometimes. In terms of my reactions, and how futile it feels when trying to make others see. Luckily, I do have people in my life who ‘get it’ completely – and I do not know where I would be without them. xx
I can completely relate to this. Except I stop talking. I go quiet and look snobbish.
Thank you so much for reading.
I hear you, I hear you, so much I hear you.
It’s interesting hearing it from an adults with autism’s point of view x
I know what you are saying, but I wouldn’t see it as an excuse. I’d see it as a chance to educate someone else; some will be prepared to listen and some not, sadly. This is a brilliantly written post, as all of yours are, and makes perfect sense to me of course. Those who don’t get it don’t know what they are missing. So much more I’d love to say but I don’t have the eloquent words that you do!
I get this, Danielle… I recently read a thing on having poor executive functioning, written by an autistic woman. There was so much of it that was familiar; trying hard to be on time, get things done, keep things tidy etc, but failing over and over. And ending up appearing lazy and/or not caring… And even though she now had a diagnosis, it still seemed to others as if she was just making excuses. Because she was competent in other ways, well-spoken, etc.
I think it’s similar regarding other invisible disabilities and illnesses too. For example, burn-out, depression, fibromyalgia, ME etc can all make it more or less impossible to cope with otherwise simple aspects of life, and it will seem to others that your thoughtless, selfish, or ’you just can’t be bothered’. Hugs to you xx #SpectrumSunday
I have many of these characteristics too, and they have done me no good. I’m not convinced, though, that they amount to autism, as I have learned the need to control them, and see them as a response to failure to understand the world, and the principle of mutual responsibility, as a young person.
Exactly! I feel that, laying myself out in hopes to make it better not knowing when to stop and digging a deeper hole. When I have arguments with my SO this is how I feel and he thinks I’m not listening or not letting things go, “poking the bear”. I hate it because I truly am trying to make it better not worse. The only way I know to make it better is to over explain to just try to get someone to understand me, when it only does the opposite. The worse part is being self aware but not knowing any other way or how to stop so I have self hate about it later. Thank you for your words! I never thought someone could put it into words!