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 or five 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.

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. 🙂

Oh, What It Would Be To Have A Heart Made Of Armor

Taking off the mask

I feel like a ghost most days.

This feeling intensifies when I am in a very social situation with people in loud, chaotic, multiple-conversations-happening-at-once setting. I have a very difficult time functioning in this type of setting, no matter if the mood is happy or not, so I don’t really engage and end up usually shutting down.

This, naturally, confuses most people and I usually end up getting asked if I’m okay or will be mistaken for being aloof, shy, upset, detached, moody, etc.

Then I become a ghost.

This happened last night. I was struggling to be “on” after having a really exhausting day in terms of too much “people-ing” and sensory overload in a busy city with huge crowds, etc. I couldn’t engage enough. I probably should have spoken up about the problems I was having but didn’t. The company knew about my diagnosis so maybe they should’ve spoken up, too.

Regardless, this kind of stuff triggers the fight-or-flight response, making me want to disappear from everyone and everything.

I found a really good article from the National Autistic Society regarding autism and loneliness. It is spot on and perfectly depicts my own feeling on this subject.

I’m learning that these down-to-the-bone-marrow feelings of isolation are probably linked, in a way I suppose, to the shutdowns.

While I feel my particular autism has many strengths, communication is one of the areas where I do find it to be a disability.

Casual conversation.

Making and keeping friendships.

Social interaction.

I am going to be 35 on Monday and I suffer just as much as I did when I was a child when it comes to integrating into a social “norm” setting and maintaining friendships.

I am very good at “camouflaging” this, when I have the energy to, so anyone who has met me in the last few years won’t really notice or will be mega surprised to find out about my autism.

But those who knew me before then–before I mastered my masking techniques–won’t be surprised at all.

And masking is utterly exhausting.

I have written before how I don’t want to wear these masks all of the time. I want to be who I am and have people understand that I am different and that I need some guidance on how to effectively “fit in.”

I have not been wearing these masks lately but few people around me are changing and, in some cases, the “friendships” are getting worse because some people refuse to talk to me about my autism diagnosis and refuse to adapt a social situation that will help me communicate without shutting down (i.e., something a little more quiet or with less people).

Not masking is making me feel more isolated than when I am masking. But when I mask, I feel like I am inauthentic and why hide who I actually am? I don’t think it’s inappropriate for me to address when I am having troubles due to ASD and kindly request if we can move somewhere more quiet, for example. Usually, people are okay to do this, but some aren’t. And the ones that aren’t, I guess, aren’t really worth my time in the first place.

Is it unhealthy for me to think that, because I am trying to compromise by improving scripting (or “chitchat”) skills by asking, what to me, are useless questions with no meaning to help “neurotypical” people feel comfortable, people should compromise on helping me in social situations by being a little more sensitive to my disability with communication?

Am I asking too much? I genuinely don’t know if I am or not. It would be helpful for someone to tell me so I can appropriately address the situation(s) in the future.

It’s unfortunate that a lot of my sensitivities are very socially focused (overly-sensitive sensory sensitivity and sensory avoidance) but that doesn’t mean I don’t like people or lack a need for human interaction.

I do need it.

And I’ve tried.

Am trying.

And will keep trying.

Even though it hurts sometimes.

But, I guess, those who are actually interested in my good qualities and the friendship I can offer will talk about this with me. People who show complete apathy, avoidance or other negative responses aren’t really worth the energy I have to expend to keep trying.

To  communicate in a world where most people, “neurotypical” or not, are already pretty poor at communicating is hard. I mean, we are all just children with hurt feelings inside adult bodies, right? We should probably be more mindful about addressing those hurt feelings, talk it out and move on.

A quote by Nita taken from that article by NAS I linked to earlier, who is also autistic, goes like this:

“I am autistic, but I am no less worthy of friendship than anyone else.”

Those. Words. Exactly.

Sensory Profile FTW

Acceptance, Assessment

Part of my (very) lengthy assessment involved analyzing my sensory profile. I scored significantly high (if you can call it that) for sensory avoiding and sensory sensitivity.

NOW I understand why I run away from social situations so much among other things.

I’ve gotten really good at disappearing from social engagements without being seen. I consider it a pretty cool trick I’ve learned in adapting to “normal” life stuffs. This mostly happens, nowadays, at work functions where the heavy social interaction + unpredictability of logistics + trying to make small talk + high levels of distraction + large groups + lack of social buddy I can cling onto to help me with conversing = shutdown.

So I disappear. As if by magic.

I appreciate my behavior probably confuses people but can I just say how good it feels to actually be able to explain my behavior instead of coming across as misanthropic, asocial or some other frowned-upon assumption?

While getting people to fully understand how they can help me is still a challenge, I am finding that most people I share this information with are empathetic and have offered to help in one way or another.

I still have my up and down days with acceptance and figuring out how to work this all into my life so I can be the best me and have a fulfilling life experience. But little things like this feel reallyreally good.

And it helps me dust the dirt off my knees when I do falter.

Spiritual Loneliness

Assessment

I feel lonely a lot.

It isn’t a loneliness that comes from lack of people around me.

It’s deeper than that.

Like a spiritual loneliness.

I’ve never really felt like I belonged anywhere.

The older I get, the more accustom to this feeling I become.

But that doesn’t mean that it doesn’t bother me sometimes.

I know I have people around me who love me but I sometimes wonder if they really do love me.

I think it’s because I don’t process feelings like those around me do.

I feel things.

Deeply.

But I struggle to verbally express those feelings well.

Or even really process what I’m feeling to a certain extent.

That’s why I write.

Why I have this blog.

Why I prefer text messages to phone calls.

Why I go silent for a period of time when someone opens up to me.

I have oceans of empathy but struggle to articulate said empathy appropriately.

I don’t speak to anyone from my past.

I like it that way.

But I do sometimes miss having USA-relevant comradery among cultural references in jokes and experiences that people in this country don’t necessarily understand (as referenced in a previous post).

Those references aren’t on the same level of spiritual loneliness though.

And they’re fleeting.

I thought my assessment would somehow fill this spiritual loneliness somewhat, which it has, but I think I was naive or expecting too much from the outside world.

Right now, I’m battling being open about my autism or pretending like it’s not there.

I don’t want to hide who I am.

I don’t want to camoflauge.

I don’t want to be exhausted from camoflauging.

I want to be who I am. All of me. Always.

But I’m having a hard time with ignorant comments and/or apathy about high-functioning autism I’ve been receiving in my daily life.

It is making me feel even more lonely, to be honest.

Forever wayward, it seems.

I know it will improve.

“The Trick Is To Keep Breathing”

Uncategorized

You may have noticed from my previous blog posts that I’m a really honest person.

Maybe a little too honest sometimes.

I’ve always been super honest.

I actually find it virtually impossible to lie.

I’ll presume this is a trait of autism but I’m not actually sure.

It has gotten me into a lot of trouble before but I do consider it to be one of my greatest strengths.

Afterall, honesty might hurt but it’s better to know the truth sooner than live a lie for longer.

I am equally able to take in honesty from other people as well.

Even if it hurts sometimes.

Because, again, it might hurt but it’s better I know the truth sooner than to live a lie for longer.

Personal growth and all that.

Along with honesty, I also get very frustrated and agitated by things that shock my sensory processing.

I have always been this way and it has often confused my family, myself and anybody else around me.

Example: if someone bumps into me, I get a rush of agitation because it physically hurts and is unexpected.

I don’t like unexpected things to happen.

I’ve been doing a lot of reading (thank you, Girl with the Curly Hair!) and have been wondering if I should seek out Cognitive Behavioral Therapy for this.

I presume this therapy would help me learn how to handle that initial reaction of frustration/agitation better.

It’s pretty scary though. I mean…I don’t know. I haven’t actually spoken to a professional about my diagnosis since I received my assessment.

I think I’m afraid they’ll judge me or they’ll start to unpick all of these behaviors that I have thought were just part of who I am for all this time only to realize they’ve been characteristics of something else and if I change those I’ll change who I am as a person.

Run-on sentences FTW.

But I guess they’ll really only teach me tactics to live more happily in a “neurotypical” environment.

Eventually I’ll probably seek out something to help me feel less alone, etc.

But right now I think I’m okay to seek out online support and finish my books.

Then I can look into CBT if I feel it’ll be worth it…I guess?

Quote of blog from one of my favorite bands of all time, Garbage.

Spooky At Heart

Musings

I’ve been feeling kind of nostalgic lately.

Not the kind of nostalgic over really cool things like Super Nintendo, comic book trading cards or driving my parents’ station wagon to Coconuts or Planet Music to buy CDs on sticky/humid Saturday afternoons.

More of a nostalgic feeling over people.

After all, people are one of my special interests.

There are about two or three people I have particularly distinctive memories of in high school.

These two or three people are people I always wanted to be friends with but was too autistic akward to speak to.

It’s like I knew we could totally be mega BFFs but I just could not figure out how to actually speak to them on top of usual teenage feelings of insecurity I guess.

Turns out, two of those three have also been diagnosed with high-functioning autism so maybe they felt the same as me!

Anyway, I had a pretty lacklustre high school experience. I had a couple of closer friends and a lot of acquaintances but no one really knew me, and I was in a pretty dark place for lots and lots of reasons that go beyond ASD.

At the core, the reason why those friendships ended was because I didn’t know how to maintain them or the friendships became toxic due to other people being in their own dark places. I found light and developed a zero tolerance policy to unhealthy behavior, thus the friendship ended.

As I get older, I’m beginning to see the value in maintaining contact with people from those times; something I cannot obtain now.

Being a teenager is a special time. I would never do it again but there is a sort of magic in learning and discovering who you are during that phase of life.

I literally speak to no one from high school.

And that sort of bothers me in a way. I feel like maybe I missed out on something.

But, in the same breath, the friendships I did have I found really smothering and hindsight has a lot to say for life.

This is another area where if had I been diagnosed in my youth, it would’ve made things like social engagements and making/maintaining friendships SO much easier.

But, alas, I wasn’t so I had to learn things the hard (sometimes very hard) way.

But it would’ve been nice to have made friends with those two or three people.

To have more partners in crime.

To have people who loved New Order’s “Ceremony” as much as I did/do.

To have fellow “weirdos” to be “weird” with.

But now I have met my partner in crime,

who does love New Order’s “Ceremony” as much as I do

and is my fellow “weirdo” I can be “weird” with.

So maybe I haven’t missed out on anyting at all.

And those people could’ve been jerks for all I know. :p

Everything for a reason.

Everything.

Always.

For Me, Autism is Life Defining, Not Life Changing

Acceptance

Yesterday was Autistic Pride Day.

It’s a good day to celebrate the spectrum diversity of autism.

Contrary to what a lot of people think, the autistic spectrum is not linear.

It’s more like a scatter graph, which is why everyone on the autistic spectrum is unique.

Since I’ve become more vocal in my daily life about my assessment, I have generally received the same comments ranging from “but you’re still you” to “yeah, but we’re all a little autistic.”

The latter is hugely frustrating.

I’ve had to have it explained to me why people would say that to me as I don’t get it. It completely undermines my assessment and devalues me as a human being, but I’ve had to be told that it’s people poorly attempting to make me feel better or feel less “alone” even if it’s not a helpful way to do it (and they probably don’t realize it’s offensive).

This leads me to compile a list of common misconceptions about autism that I have encountered since my diagnosis. There are tons of lists like this on the internet but I am hoping that by sharing my personal experience of this it will help someone reading.


1.“We’re all a little autistic”

No, we all aren’t.  Yes, more people have “quirks” that may look like autism (ex., most people don’t really like their routine disrupted) but autistic characteristics are beyond quirks.

My social interactions, my special interests, my need to have routine, my meltdowns, my anxiety caused by not understanding social cues, communication, etc., my stimming, my sensory avoidance are intrinsic aspects of my ASD.

They are not quirks.

It’s kind of like waking up with your sensory threshold already half full instead of empty so it will spill over a lot faster/more easily than someone who is not on the spectrum.

Not sure if that makes sense but I can’t think of any other way to describe it right now.

I am still learning a lot about my own unique strengths and weaknesses of high-functioning autism and it seems the scientific community as a whole is continually learning about autism as well.

This misconception really annoys me because I have suffered long and hard only because my brain processes are different. Had I had my assessment sooner, my life now would be very different. I have very painful memories that may have been avoided had I been diagnosed young. By telling me that everyone is autistic completely undermines my experiences.

2.“I know someone who is autistic. He/she is super smart.”

People diagnosed on the autistic spectrum tend to range from average intelligence and higher. Not everyone on the autistic spectrum is a savant. It is thought that less than 100 savants are currently living globally. In the UK alone (where I’m currently based), more than 1 in 100 people are on the autistic spectrum. That rate is higher in the US (where I’m originally from). You don’t need to be a math whiz to understand the statistical significance there.

People with autism do tend to see the world differently, yes. But not every autistic person is going to be some math, science or artistic genius. Some of the sensory sensitivities that a higher number of those on the spectrum possess, however, are actually a massive benefit to society and I personally feel like people should put more focus on that over IQ levels.

3.“But you don’t seem/look/act autistic”

Gthnx. What exactly does an autistic person look, act or seem like? Autism impacts everyone differently. If you do a #autisticprideday search on social media, you may be amazed to see how many different people are autistic. Or do a search for famous high-functioning autistic people and you may be shocked to discover how some of your favorite musicians, actors, speakers are autistic.

Autism comes in a wide range of colors, characteristics, abilities, challenges, strengths and weaknesses that are unique to the individual.

Anyone who receives a score above 10 on the ADOS report is autistic. End of story.


Those are basically the three common misconceptions I have encountered thus far. I’m sure that will change the more comfortable I become with discussing my diagnosis in my daily life.

I feel it is very important to be vocal about autism to help bring awareness, education and insight as so many people do seem to lack an understanding of it.

I may process information differently, but I am still a human being.

All of us—neurotypical and neurodiverse—are all on this ride together.

I am proud of who I am. You should be proud of who you are too. 🙂

Smile with clenched jaw

Assessment, Life events

The last few months have felt like a chaotic whirlwind.

Numerous life events happening all within close proximity to each other.

Well, closer proximity than I prefer.

Traveling overseas to visit home.

Starting a new job.

Getting married.

Getting diagnosed with High Functioning Autism.

Moving house.

Most of these happened within the last 30 days.

So it’s been a lot to handle.

It’s kind of weird (though not really) because the busier I am the more I forget about my diagnosis.

But then things happen that bring it right to the forefront.

Things like sensory overload when unloading furniture at a busy disposal location.

Misunderstandings at work because something wasn’t said direct enough for me to understand.

The plethora of feelings when I tell acquaintances (out of necessity) that I’m autistic.

Or even moving house in general because, you know, routine.

This pretty much sucks.

But it’ll be over soon and it will be worth it.

I’m not sure I’ve come to terms yet with my diagnosis.

It’s hard to think about it in this chaotic whirlwind.

It’s brought up a million and one new feelings.

And it has changed the way some people have interacted with me.

Some for the better, some for the worse.

Hm.

It’ll be good to have some down time over the summer.

Process of Acceptance

Acceptance, Assessment

So I felt pretty good on Friday about my diagnosis but now I’m hitting this weird temporary wall of denial. I keep taking the AQ test over and over and keep getting the same “autistic” result. I had a gruelling session with two highly regarded professionals leading the way for accurate diagnosis of women. It’s obvious this is what I’ve been my whole life but having a label to it now is making me feel … sort of all over the place. More so than usual. It’s raising a million and one questions and concerns like:

  • Who do I tell?
  • Do I announce it with a mega phone or keep it quiet?
  • If I keep quiet, I won’t help educate more people about how diverse autism is.
  • If I am vocal, I’m not really ready for the potential negativity (and you know there will be because there’s always THAT ONE GUY or GAL).

I’m not so sure I’m ready yet for the:

  • “You don’t look or seem autistic,”
  • “But you’re really smart,”
  • “You only want attention,”
  • “You’re going to be a problem now,”
  • “I don’t know how to act around you.”

I have told a handful of people so far. Those people have been supportive. They’ve said I am still me with or without a label.

That’s great but I don’t really know what that means.

And having the label is what is making me feel weird right now.

I’ve had 34 years of painful experiences that have deeply impacted me because I was autistic and no one knew.

Had I known I was autistic sooner, I or my parents could’ve negated some of those experiences.

I also think my father was autistic but he has passed away so we will never know for certain.

But, alas, no one was diagnosing high-functioning autism when I was in school let alone in girls or women.

So the label is useful for practical reasons.

And I am not sorry for who I am.

Nor will I keep it a secret.

But wearing that label is like breaking in a new pair of shoes.

It’ll fit perfectly in time. Not everyone will notice or like my awesome new shoes but others will love my new shoes just like they loved my old shoes and none of it will even matter because it (as in life) is all beautiful.