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. 🙂

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. 🙂

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.

Healing in Rain

Acceptance, Musings

I’ve been having some pretty intense writer’s block the last couple weeks.

It may be because of intense heat.

It may be because of being busy.

It may be because of laziness.

Maybe.

I walked home in the rain yesterday.

Normally, that would kind of blow but it was nice yesterday.

All the greenery looked more vibrant and relieved being bathed in soft, gentle rain showers.

Refreshed.

I used to love writing on my mom’s back porch during rain and thunderstorms alike.

It would usually make me feel really reflective of life and things, thus spurring some pretty intense writing.

That would then lead to some pretty intense healing.

I don’t have a porch anymore (yet) but the walk yesterday did make me reflect on life and things.

And that’s really my most favorite activity — to think about life and things.

Especially if there’s rain.

I guess the real reason why I’ve been having writer’s block is because I’ve doing a large amount of healing.

Analyzing.

Accepting.

Strengthening.

Letting go.

Feeling humble and complete in my soggy Vans, soaked umbrella and dripping coffee-colored curls.

 

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. 🙂

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.