Tuesday, February 19, 2019

42, born and raised in southern Illinois, USA, but left in my 20s and currently live in Edinburgh,

 I was born in 1976 to a single mum in a small, poor, Midwestern town. I was well-behaved,
“gifted” girl. Absolutely no one would have been looking for signs of autism in me, and even if they had been, I most certainly wouldn't have met the criteria of the time.

I am person of contradictions: I'm fragile, but tough; rigid but adaptable; flappy but dependable,
sensible but impulsive. That's just to name a few! Most people realise I'm a bit on the flaky side,
 but I don't know if many realise how dependable I am, and that when the shit hits the fan, I can handle it. Handle it better than my day-to-day life, as a matter of fact.

I clean houses for a living. I do like it, but I wish it paid more. It's good work for me in so many


• It actually gets me out of the house and keeps me doing daily physical activity
◦ I'm very much a homebody and get can stuck sitting for long periods of time if I'm
engrossed in something.

• I avoid working with the public for the most part. Many times clients aren't even home
when I clean, so my social interactions are minimised. Even when clients are home it's
one-to-one interaction, which I often can do quite well with. Also, I've been cleaning long
enough that I have excellent clientele, and many of my clients have become what I would
consider friends.

• My work hours are flexible and allow me room to maneuver when I am having poor
physical or mental health.

• I can wear noise-cancelling headphones at work so that I can block out unwanted noise,
and my work is most often done in daylight, so I don't have to deal with lights that bother

◦ After working in offices when I was younger, I vowed never to work in that
environment again—not with all the fluorescent lights, open-planning, and hot desking!

My biggest accomplishment to date is having survived—quite literally being alive. There have
been many a dark night of the soul in my life, some of them lasting many years. Somehow, through my own perseverance and the love and support of my friends and family, I've always come out the other side.When I was growing up, I always saw success as a career and such, but the older I get I realise that laughing and loving is enough. It's not about “doing” anymore for me. It's about “being.”

As I was not diagnosed, I did not receive any support as a child. As an adult waiting for a
diagnosis, I am not eligible for most support, but I find the online community and access to resources to be extremely valuable.

I think that one of the main things that Neurotypicals don't understand about autism is that so many of our difficulties stem from being over-sensitive in a world that is very overwhelming. So much is going on sensory-wise, then you add in the social obligations, and the sheer number of things that need done in a day. Then add in the amount of time it takes to process and sort through all  of these experiences, and it's exhausting.

To all the others on the Spectrum, I would say to you that you are all wonderful and perfect just
as you are. Each of us have our own path to follow and our own pace and lessons to learn.
I know this journey might be filled with struggle and strife, but I hope that you are able to find the strands of joy that run through it.

I didn't see any signs at all, but then again, I had a very stereotypical view of how autism
presented and I knew nothing about how it presented in women. I truly thought that I couldn't possibly be autistic because I'd “managed” so far—kept food on the table and roof on my head, etc.

 It was my sister who first suggested that I might be autistic, but I—like so many—had a very
stereotypical idea of what autism looked like. I couldn't possibly be autistic. I was 40 and had managed to survive on my own--holding down jobs, traveling the world, going out clubbing, and much more. But hen one day I had a meltdown over an event I was supposed to be attending. This happens a lot, so often as a matter of fact that I have a name for it: Anticipation Anxiety. It happens after a build-up of stress related to something I'm supposed to do. Sometimes I'm able to shove it down and go and do “the thing,” but other times it results in me spiraling out of control and losing it. Talking to my sister, she was able to perfectly describe the stages of my meltdown. I was floored. I'd been blind to the actual process myself—completely unable to see it until it was pointed out, even though it was a process I'd been experiencing my entire life. I later read an autie blog post that described this process almost exactly. That was when I decided to book an appointment with my GP to get a psych referral for an autism assessment.

I have not yet received a diagnosis. Last year I was assessed by a junior psychiatrist, who told
me that she knew very little about autism and next to nothing about how it presented in adult women
After an initial psych consult, one questionnaire sent to my aunt asking about my childhood, and one two-hour session asking me a lot of questions (I do not know the name of the test), she declared that she could see that I clearly struggled and had autistic traits but not enough to qualify as autistic. She would not consider any of my sensory processing issues during the diagnosis; though she did acknowledge that they were likely to be added to the next edition of the DSM. Although she reported to a senior consultant, shes the only person I spoke to.

 I had a number of issues with the process, of course. I was very stressed and unable to express my needs. No accommodations were made for the fact that I might have problems with the environment. Worst of all, the day I had the two-hour question session, I arrived at the appointment thinking I was going for a 30-minute check-in appointment. No one had informed me that my appointment had actually been changed to my actual assessment. She didn't even mention it on the day as she assumed I knew, so the appointment just kept going and going with me asking questions, not realizing my entire assessment was based on this appointment. I grew steadily more agitated as I had another difficult appointment scheduled after, and I was worried I was going to miss it. Anyone autistic knows just how difficult this kind of scheduling change can be. I was a mess by the end of it, but only on the inside, as I was running the “compliant, get-it-over mode.”
I am now waiting for a referral to get back into psych and request a second opinion with the local
adult diagnostic team. I recently discovered the NICE guidelines, and I truly don't think my assessment met them. I was neither assessed by someone actually qualified to diagnose autism and there was no involvement of a team.

I can't speak to how I felt after a professional diagnosis as I don't have one, but I know that last
autumn after more than a year of pretty thorough research I accepted a self-diagnosis of myself and within weeks my depression lifted. (I have suffered from various degrees of depression since at least my early teens, maybe even younger.) With this newfound knowledge, I finally had some explanations for a whole range of struggles that I often hadn't even been able to put words to. I rejoiced in this knowledge and understanding, and am now trying to use this information to make my life easier through accommodations and eventually unmasking.

I would have to say that NOT having a diagonsis  did make things more difficult for me, but I did the best I could with the tools I had at the time, and in retrospect, with the knowledge I have now, I think I've done a damn good job all things considered. I hope armed with the knowledge that I have now that I can do better in the future.I think the biggest barriers to diagnosis in adulthood are (particularly for women) a lack of understanding in how it presents in adults and the limited number of professionals who actually do, and then the lengthy waiting times to get assessed.

I have faced so many obstacles in life—so many I don't even want to list them all here. But
through all of the them, it is my resilience and adaptability (despite my desire to control) that got me
through. I keep getting knocked down, and I always think this time I'm not gonna get back up, but every damn time I get back up whether I want to or not, because there is NOTHING else to do but keep on keepin' on.

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