I think I know.
I have read many accounts of diagnosed autistic adults having doubts back and forth about whether they are autistic or not so I might still have them even then.
I might still worry that I’ve carefully crafted an argument and managed to sway and manipulate the expert/whoever into believing me.
But why would I do that? Could I even do that? That makes no sense. How did I arrive at the epiphany of being autistic last November anyway?
Through seeing my youngest daughter having the same struggles I’ve had, specifically the sensory processing, executive functioning and social ones. I always wrote myself off as a person who had survived a tumultuous childhood and then been awkward, difficult, selfish and slightly mental which then turned into obsessive and neurotic.
For no reason.
Why would I want to self-diagnose as autistic? Why not something glamorous like “Intelligently Sensitive Genius Disorder” or “Highly Brilliant Syndrome”?
I have read articles about highly intelligent people having troubles socializing and fitting into everyday life. Why didn’t I land on one of those?
Because my husband saw similar traits in our daughter that we see in her cousin, who is autistic. Because I took to google like a dog with a bone and as soon as I read about autistic traits in girls and women, as opposed to the confusing medical definitions I’d tried to interpret years ago, the light went on.
Yes, I saw the traits in my daughter but I was absolutely blown away by the sameness to me in the stories I was reading on blogs and in articles written by late-dx women.
I was in awe that there was finally a place that I fit in. A place where everything I was, thought, think and am made sense.
And these women HAD been diagnosed.
This is that part that is tripping me up:
Some of my family members have expressed doubts about there being autism in our family. I get that. We often don’t notice (or want to see) the things in others close to use that are the same as us. When it was suggested that my son was autistic 14 years ago, when he was 5, I laughed it off. He was fine – he was just like me. Sure, we were a little different maybe – pretty intelligent – so doesn’t that make us a little different? I couldn’t see him or myself from the outside – because I was on the inside with him. I was also very opposed to ‘labels’. It seemed every second boy in school was being labelled with ADHD and given pills. I figured they were just fidgety because they were boys and not as apt to sit primly like girls and play ‘school’ when they wanted to be outside running around.
So I get it. I mentioned the idea of autism in our family to my one and only sibling, a brother, 6 months ago. I haven’t heard from him since. I’ve emailed and written. Nothing.
I can only assume that he utterly rejects the idea and is so repelled by it, he has chosen to not even respond to my communications anymore.
A few years ago I might have done the same thing.
I remember being offended when my mother-in-law suggested that our youngest daughter was a little like her autistic cousin. It wasn’t known that the cousin was autistic at that time but she definitely had struggles we could all see.
I guess I’ve always wanted to be in the ‘normal’ camp.
“Move along. Move along. Nothing to see here.”
So here I am now. With my doubts.
I have read articles and posts about self diagnosis vs. official diagnosis. While there is a vein that says self-diagnosis is fine and valid, there is also a vein that says it is not. They argue that it is just an excuse ‘those’ people are using for all their problems and that self dx is an insult to all “real” autistic people. The comments/reaction to that article were pretty bad, I’ll grant you, but it did cut a little too.
I mean, I don’t want to hurt anyone. I fit into the autistic community like a hand into a glove – like never before in my life. But I don’t want to do any disservice and there is that part of me that says I can’t play because I don’t have my papers. At this point I don’t feel there is any way for me to get any. I am too emotionally vulnerable. I don’t have $4000 to pay for an official assessment. I googled counselors in my area and the only mention a few of them made in regards to autism was how parents can better ‘cope’ with their kids’ autism.
So this is the rub for me.
Can I ‘come out’ if I’m ‘only’ self-diagnosed?
Am I legitimate?
Can I add the #ActuallyAutistic hashtag back into my twitter posts? I have stopped using it, fearing that I’m some sort of diabolical impostor – a wolf in sheep’s clothing.
Can I say I am diagnosed? Even if the answer to who diagnosed me would be “Ummm…….myself?”
I can’t lie. Once I was asking a friend how to say I was ‘fine’ when someone asked me how I was. I was not ‘fine’ but knew people don’t really want to know how you are – it’s just something we all ask. But I felt like a liar saying I was fine. She told me “Well, you can say you are fine and here’s how: Are you physically fine?” Yes, I was physically fine. So there – I found a way to say I was fine because I could add the physically part in my mind and then I didn’t feel like a liar anymore.
But, in terms of autism, it seems that all the voices (that I’m listening to) say we aren’t truly ‘there‘ until we have the paperwork to prove it. I mean, EVERYONE’S talking about how their life changed once they were diagnosed, when they were diagnosed etc etc. And my life has also really changed since I realized I am autistic.
Can I be there without the paperwork? Am I not autistic before I have the paperwork and then somehow magically autistic once I do have it? Wasn’t I born autistic, whether anyone knew it or not?
Because….maybe, even though autism fits me perfectly…..maybe I really have “Crazy Psychopathic Defective Syndrome” or “Simply Utterly Mental Disorder” instead and I need an expert to set me straight so I can just go about my crazy way with the right words attached and shut up about it.
I worry that I will be accepted into the autism community online (which I guess I already have!!) and then, since I like to write and contribute, some man in a crisp business suit will read this blog, look me in the eye, point at the door and shout (with bulging eyes and spittle flying out of his mouth),
“GET OUT! SHE’S NOT EVEN DIAGNOSED!!! IMPOSTOR!!! EVERYBODY DISREGARD EVERYTHING SHE HAS SAID!!!! DISGUSTING IMPOSTOR!!!”
I mean, I’m not being difficult in regards to official diagnosis on purpose. There are significant barriers in my way to being diagnosed at age 47. I have listed those previously and they are varied and significant.
But that can’t mean I’m no where, that I have no voice. Because I am here. And I am who I am. And I think the way I do. And I am autistic.
So can I say that I am diagnosed? Even if it is me that has diagnosed me? I have had quite a few comments from others who agree with my diagnosis.
But is it real? Or am I a fraud?
I guess I’m the one who is going to have to answer these questions.
(Here is my original post from January 2018 in regards to my diagnosis barriers which are sometimes, like right now, a dilemma to me – and sometimes they’re not!)
“My diagnosis story might surprise you – but it might not.”