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/shutdowns, 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.