Still Autistic. Still Proud.

Acceptance, ActuallyAutistic, asd, Assessment, autism

It’s been almost a year since I received my autism diagnosis.

Much has changed in terms of understanding myself, much less has changed elsewhere.

All of it has been life defining.

In honor of April’s World Autism Awareness Week/Autism Pride Day/Autism Awareness Month, please watch this short video created by Autistica that visually depicts what it’s like to be autistic. It’s super helpful if you know/love/care for someone who is autistic or are just generally interested in understanding it better.

I have a hard time explaining in words what it’s like for me so this video is super useful.

While my personal journey hasn’t been the easiest, getting diagnosed remains one of the best decisions I have ever made.

I am proud of who I am and will never apologize for being autistic. 🙂

The Moon, My Love

asd, autism, Musings

Conscious I haven’t written about my autistic journey for some time, I sat down to write about my most recent misadventure involving my special interest in music, and how I may or may not have gotten myself into a little bit of a pickle around concert tickets out of fear I would miss out, spending money that I don’t have, and the reactions from those around me who aren’t autistic.

But I really just feel like writing about the moon.

One of my most favorite activities is to sit outside under a clear sky and observe the moon and a plethora of stars above us.

No photo can ever do it justice.

Before I moved away, I used to do that almost nightly in my parents’ backyard no matter the season though partial to the crisp Autumn months and spring evenings lit by lightning bugs.

My favorite was going to an isolated part of the beach and just sitting and observing; bathing in the pearly glow of the moon.

The mellow breeze rolling off the onyx-colored waves kissed by moonlight lulled the sticky, humid summer air.

It was mega cathartic for me.

Nowadays, my back garden has replaced my parents’ backyard but the same activity occurs no matter the season.

I live less close to a beach now, though, and this is something I deeply miss.

There’s something magical, ethereal about the moon and its energy that resonates with me.

I sometimes wish I could sit on the moon and just observe what it has, does and will observe;

all of the cyclical shifts,

extinctions,

creations,

loves,

losses,

destruction,

beauty,

it has seen from Earth and mankind.

There are a lot of scary things happening around us everywhere and it’s easy to get weighed down by it all.

But, regardless of who we are, what we’re doing, where we’re doing and why we all look at the same moon at night.

7.7 billion people observing a 4.53 billion-year-old moon observing back.

Infinite in feeling, finite in observation.

I am in love.

Fun fact: my childhood nickname was moonbeam. 🙂

 

Get Back Up & Do It Again

feelings, Life events

It has been a pretty rough start to this year, which may be mildly ironic given my year in review of 2018.

But things can’t always be peachy keen.

How dull would life be if everything was perfect all the time?

We would never appreciate the good moments,

the beautiful moments,

the vulnerable moments,

those moments that feel infinite.

I am a firm believer that hardships happen to spur growth and/or change,

and boy, I sure am going through some growing pains right now.

It’s easy to think that, with age, you become impervious to growth;

that you’ve learned all you needed to learn during your youth so now the world just sorta happens around you,

but that is truly naive thinking.

Part of what I am learning is that, while I thought I had learned almost everything there was to learn, I was wrong and I am learning a lot right now,

changing a lot,

metamorphosing.

I mean, I guess life has been pretty sweet for the last 4 years.

I’ve been long overdue for a rocky one.

So, here we are and here I am learning.

It’s kind of rough.

But there is so much shimmering wisdom blooming within this chaos.

sunlight in landscape

Life Is A Funny Thing

feelings, Life events

My stepdad passed away the other day.

Three weeks ago, he went to the doctor for back pain that wouldn’t subside.

Turned out to be pancreatic cancer; tumors from his pancreas pushing into his spinal cord.

The doctor told him he had at least 3 months.

The cancer was in his bones but not his other organs.

Radiation treatment began, chemo to shortly follow.

He was admitted to hospital the other night with shortness of breath and confusion.

His blood levels were very low oxygen due to the cancer being inside his bone marrow.

He kept saying to my mom “Let’s get through this so I can get my treatment,”

“This won’t impact my treatment, right?”

He became scared, confused and agitated.

Then he passed out.

They tried reviving him for 45 minutes.

He was 48.

They think he may have had a blood clot that caused the rapid decline in health.

My mom didn’t opt for an autopsy so we won’t really know for certain.

My birth father passed away in 2008 from liver disease.

He was ill for 15 years so was slow and gradual in comparison to this but no easier, obviously.

He was my hero.

I am still broken in places due to his passing.

This is my first real experience with a more sudden death.

I have a lot of complicated feelings right now.

Some of which I feel incredibly selfish for like “Why am I not allowed to have a father figure in my life?”

Others, less selfish like “Why isn’t my mom allowed to be happy?”

“Why did he have to leave scared and confused?”

“Why did he even have to leave?”

When my birth father passed, I developed this permanent heavy weight from death’s hands resting on my shoulder, whispering the Virgil’s quote:

“Death twitches my ear;
‘Live,’ he says…
‘I’m coming.”

I live with an intense urgency of life.

Multiple times a day I ask myself if I’m happy with what I’m doing,

if I should be doing more,

if I’m okay with my current life,

if I should change things,

if I should move back home,

if I should change careers,

If.

Life is a funny thing.

I’m a firm believer that we are all on our own paths that are meant to teach and we are to learn accordingly.

But I am struggling to understand what all this death is trying to teach me.

I mean, I know it has taught me humility and deep empathy for the human journey.

It has taught me patience and spiritual compassion that we’re all hurting inside from something; that we’re all working on something (even if many don’t realize it) so to be kind even if people are not kind back (something I think I will forever be working on).

I thought I learned all I could the first time around.

But I guess I was wrong.

And, really, it’s not even about me.

Grief is a deeply personal experience so I cannot speak for others.

I just know that I want them back.

Please, come back.

It’s Not A Race To The End

2018 wrap up, asd, Assessment, Life events, Musings

Imma jump on this 2018 Year in Review bandwagon right quick because this year, for me, has been pretty eventful so I am moved to write about it.

I don’t normally write stuff about this since I think of time more contextually rather than numerically but here we go.

Two large life-changing events happened for me:

  1. I bought my first house
  2. I received an affirmative autism assessment

I’ll elaborate:

House Purchase

I don’t really see the house purchase as such a huge deal in like a societal achievement or whatever. I guess partly why it’s a big deal is because it’s taken up a lot of money and a lot of time to get it all sorted, fixed up, etc.

It is also in another country, which I guess makes things slightly more complicated but not really because if I ever decide to go home I’ll just sell it.

The main reason it’s a big deal is that I never thought I would be in this position. I always had this vision of myself that I would be in a quirky apartment with 2 cats living the single life forever. But I found someone super special just before I was going to go home and many things aligned that allowed us to be together.

Fate.

Finally.

So it’s been a large and expensive undertaking but the mental benefits have been surprisingly profound to me. I finally feel like I have a home again after moving away (drastically) to start uni. It’s been a long, hard road with many ups and downs, deeply regrettable encounters with a couple of people (though they lead me to where I am now so can’t really regret it as roses grew out of mud for me but still very bad memories) and wonderful learnings from others. I doubt I will ever go into the details on this blog but trust me when I say that the struggle was real and the hustle has paid off.

Assessment

This time last year I had booked my autism assessment and was compiling information from my mother and those closest to me for anything that I do or did that may be related to autism. I went private for my diagnosis since the NHS waiting list is incredibly long and I needed the answer sooner rather than later.

It cost a lot of money but it was worth it.

It was a pretty straight-forward assessment but grueling and long, and I think the two women who conducted my assessment knew long before we were finished that I was/am autistic.

It has been a phenomenal revelation and has filled in every missing piece for me.

I am 35 years old and have been on a quest to understand why I have felt like such an outsider and/or Frankenstein/Edward Scissorhands my entire life. I was in and out of different therapies, taken on and off different medications, etc., from about age 10 onward and struggled very badly with depression, anxiety and other negative feelings because no one could really tell me the why or because of my behavior. Now I have an answer that, had I been a kid right now, I probably would’ve received but no one was really looking out for autism when I was growing up much less diagnosing it for young girls or women.

Anyway, I started this blog to give myself a space to anonymously write my feelings about my assessment and whatever else is on my mind with the hope that maybe my words will help make one person out there on the interwebs feel less alone and feel supported in their own personal neurodiverse or neurotypical journey.

Because, you know, at the end of every keyboard is a flesh-and-blood human being who needs love and support just like everybody else whether they’re autistic or not.

I feel good about my assessment now. Some days, I still don’t know where autism starts and ends in my brain for me but I don’t really care. I am who I am. No one really fully understands autism and I have my own ideas around it but it just doesn’t matter. We are all having this human experience together despite our differences and I am happy/proud of who I am.

Plus, I always wanted to be part of the X-Men so this is the closest I’ll get. 😀

I always thought I would be dead by the time I reached 30. Once I graduated uni forever with my BA and MA (which was around the age of 31 or so), I thought to myself that anything that happens after that would be a bonus.

Four years later I am sitting here with full revelation of who I am, a home to call my own, a partner in crime and a good job with kind, friendly people.

And it’s those little things that matter the most to me. Yes, the political and environmental state of the world is profoundly depressing on a level that I do not wish to discuss on my blog.

I don’t know how I managed to turn my life around like this but I have and I am so grateful.

My new goal in life…

…a different kind of hustle, if you will,

is to be kind to people because, as I’ve said in other posts, we are all on a journey and all have baggage. We could all do with a little more kindness in our lives and I hope I can bring that while I’m still here.

Sorry, I Can’t “People” Right Now

asd, autism, Musings

Sometimes I want to write but don’t know what to write about.

A thousand and one things rattling around inside my head that are eager to be expressed

but life takes up so much time,

and I take up so much time mentally decompressing after a flurry of activity.

I went home for the holiday and that was nice to be home.

It was also intense and peopley.

But really nice.

It has taken me a week to decompress.

More holidaying to come will mean more time to decompress.

I am lucky/grateful in having time off over this festive period to do just that.

Mental decompression.

It’s an underrated healing tactic.

My Autistic Brain

Acceptance, asd, Taking off the mask

Oh, hello there. It’s been awhile.

5 points if that sentence reminded you of that Staind song “It’s Been Awhile”. :-p

I’ve been doing some thinking lately about what autism is for people.

More specifically, what it is for me.

Because, I figure, the more I understand my own autistic brain, the better I can help those around me understand me and ensure we have a happy balance between my needs and theirs.

So, I have compiled a list of what I think are some of my autistic traits.

I don’t know how many people in my daily life read this blog, but maybe they will read this and learn some things about me that don’t generally come up in conversation.

And, of course, maybe it will help you as well, my kind reader, feel less alone in this world because you, too, are autistic or love/respect someone who is.

Or maybe you’re just lurker.

Or stalker.

Whatevs.

Anyway, here are some characteristics of my autistic brain:

  • I interrupt in conversations pretty frequently — just don’t really understand when it’s my turn to talk
  • Let’s not get into the massively high levels of anxiety I get as soon as I walk out the front door because the outside world is truly difficult to understand and process
  • I have a hard time understanding social greetings and niceties, small talk,  etc., and have a hard time figuring out how to reply (I have learned a set of bank questions I use but they don’t always work if something happens that isn’t on my “script”)
  • I understand many things literally. “It’s raining cats and dogs” –> I literally picture cats and dogs coming down from the clouds like rain
  • I have dyscalculia and very likely dyspraxia though I haven’t been formally tested. This was raised as highly likely during my autism assessment
  • I really don’t like being touched during social greetings. Kisses on the cheek make me crisp up like a dried leaf. I’ve gotten better with hugs but I am crawling up the walls any time I enter or exit a social situation
  • I can feel electricity. Not sure if that’s an autistic trait or not
  • I have a heightened sense of smell
  • My sensory profile is grossly above average for sensory sensitivity and sensory avoidance, and mildly above average for sensation seeking but this is very “sensory” dependent (i.e., it’s on my terms and only for a very small selection of things and for a very limited amount of time)
  • I stim during meetings at work or when I am starting to get overwhelmed by crowds, conversations, general peopling, when I’m excited or bored, etc. I try to keep this hidden but I’ve become more open about it in recent months
  • I think I have a heightened sense of touch, which plays into the social greeting thing. Often times, things touching me for an extended period of time (clothing, for example, or contact) physically hurt
  • Routine. Routine. Routine.
  • I’m not a particularly imaginative person. Never have been. People think I am but all I ever did was mimic what I saw on TV, movies, observations from other people, etc.
  • I. Notice. Everything.
  • I am very black and white in my thinking and often either have “too much” empathy (if that’s even a bad thing) or not enough
  • SPECIAL INTERESTS FTW. I don’t want to go into those on here though because I would never stop typing if I did!

This is nowhere near a complete list and I am still learning about all these things on my autism journey. It feels kind of good to list them out though, even if it’s just to reflect on.

Autism is very unique to an individual. If you know one autistic person, that does not mean you know them all. It is really important to make the effort to educate yourself about the autistic spectrum and discuss it with someone you know who may be autistic. It can only improve your relationship with that person. 

As I always say, there isn’t any shame in neurotypical or neurodiverse behavior. We’re all having this human experience together. 🙂