“Real Autism”

The title of this blog is a phrase I have now heard a few times from friends of mine who have been involved in education. At least one of them has been involved in educating autistic youth. The others mostly teaching mainstream or specials classes, so loosely involved in autistic education.

This always gets brought up as a talking point along with “autism is the new candy diagnosis, everyone has it”. “Everyone has autistic traits now! If you don’t like loud noises and prefer to be by yourself, then you must be autistic!”. It’s the new catch all diagnosis like ADD was in the 90s!

Rolls eyes.

Yes, “rates” of autism are “increasing”. That happens when your understanding of a disorder increase and more studies are conducted and you realize that you have actually missed people from being included in the diagnosis. The inclusion of Aspergers into ASD increased the rates for one. Further studies into women with ASD is doing this as well. Further studies into the now bad-form “high-functioning” label are also increasing the rates. This is a good thing in so many ways. It means that people will feel accepted and they won’t feel alone.

Personally, the label was like a giant weight was lifted off of my shoulders. I cried from the relief. There are people out there who actually know what it feels like to be like me. People who actually understand me? Increased understanding and knowledge is what led to this moment of relief and people deserve to have this moment for themselves or to grow up understanding why they aren’t quite fitting in or being understood.

“Real autism is isolating”

As if we need to gatekeep Real Autism™ to only those with nonverbal autism who need higher amounts of assistance in school/work who may stim in most “normal” environments.

It is absolutely infuriating to hear someone trusted and loved diminish my own existence and feelings with “real autism” because I look normal from the outside. Because she respects me and sees things in me that make her envious. Because I fit the mold that people are supposed to achieve in life. I have a job that I worked hard for, I hit the success mark, a husband, house, kid, pets, the whole nine yards. I’m doing alright, everything is fine, right? Autism is just some weird label that they give to people who are extreme introverts now, after all.

Autism is isolating. Extremely isolating. I cannot speak for everyone on the spectrum, because the spectrum is vast and we do not all share all of the same traits and experiences but I can speak for my experiences. I come from a family that made it clear I was not to ask for help, that it would not be given and I should learn to stand on my own two feet. No support network. I had two best friends in grade school. Both of them stopped talking to me before we graduated. I stopped talking to literally everyone else pretty much as soon as I graduated. The door was shut so let’s move on, so to speak.

I have no one I could call to go for a beer after work because of a stressful day. Might be able to convince some co-workers to go to a local nearby bar after work, but that’s not the same thing as a trusted friend to blow off steam. I wouldn’t even begin to know who to call if I had to unexpectedly get someone to watch my dogs for a weekend emergency (I’d pay extra for a kennel or take them with me).

I worry because if some freak accident happened that killed or incapacitated both myself and my husband while my daughter was in school who would even pick her up while her godparents were traveling to be able to take care of her?

This isn’t to say that I’m totally friendless. I do make friends, but making friends comes at a cost that it seems neurotypicals don’t quite have to pay? I moved to a new city in early 2017 and I have focused on career advancement. I have done amazing things with my career — gotten certifications, degrees, promotions, and landed my dream job! But it came with switching companies and teams and being exorbitantly busy and socializing fell drastically to the wayside. How do normal people manage to do the career push while still gaining and maintaining friendships?

There was a time in my life when I felt like I had the most “normal” experience. I fit in, had a nice group of friends. I found my people. I still talk to people from that group regularly almost ten years later even though I don’t even live in the same state any more. I can’t even tell you what spell I cast to have this happen, it just seemed to fall into my lap. I also wasn’t chasing a career, I was complacent at my call center job.

“Real autism is debilitating.”

Again, with the gatekeeping. I don’t think I really need to point out that it’s not really for people who aren’t experts in the whole spectrum disorder to really be trying to gatekeep what autism is. It’s definitely not for someone who isn’t on the spectrum to be telling someone who IS on the spectrum that their experiences aren’t valid enough to be classified as Real Autism™.

I am soon to be 32 years old, and still slowly untangling the webs of mess of years of masking and trauma that came from not even knowing what and why I was different. Realizing that I have had so many years of training to just be the perfect paper doll of whatever anyone wanted me to be so that our interactions were easy and simple and could go away.

I was pretty much always taught as a kid that I had to avoid and resolve conflict and it was expected that I would give people the answer that they wanted, so I basically learned to do this with everyone, in all situations (guess how fucked up this gets in a lot of questionable situations…) I’ll just put on a new mask for any situation and be a perfect little chameleon as a survival instinct to get through pretty much anything.

I also realized that there are people who know and intentionally seek out autistic individuals because we are more naïve and trusting and take them based on what they say more than their actions. They are manipulative little jerks who will use you for their own gain and do not care about the harm they do in the process. It only takes one of these people to do some untold damage to a psyche.

Autism is real, no matter the support level needed. No matter how real it looks to you on the outside, from your curated exhibit view of their life. Just because you can’t see someone freaking the fuck out in the shower because they landed their dream job and that is terrifying. Or because they are driving in the rain and their husband is snoring in the passenger seat and the sound of the snoring and the rain on the car roof is causing a sensory overload that is making them want to scream and run away and pull their hair out. Or because you don’t realize that the normally verbal person is incapable of getting the words out right now and there is an entire paragraph screaming and beating against their brain burning to get out that they literally can’t let out and its tearing their brain and entire body apart. Just because your curated view looks intact and fine, doesn’t mean that it’s not Real Autism™.

3 thoughts on ““Real Autism”

  1. I relate to so much of this. I was diagnosed much later in life (age 57). Growing up, I was also urged to stand on my own two feet with minimal support from family. And I only ever had casual friendships.

    About ten years ago, my rented apartment needed some work that was likely to go on for a few weeks. The landlord suggested I have my cat stay elsewhere while work was in progress. I couldn’t afford to board the cat for such a length of time and had no one to ask. So I told the landlord I would confine the cat each morning before I left. He asked why I could not find somewhere for the cat to stay. I said I didn’t have anyone to ask. Then he got exasperated and said, “There HAS to be someone!” It made me feel like the biggest failure ever.

    I can go to a coffee shop or pub several days a week for more than year — and never become one of the regulars. Meanwhile, I see strangers walk in and become one of the regulars by the third visit. The autism diagnosis has been comforting in a way in that I can just accept it as it is and not feel obligated to try to fit in.

    Liked by 1 person

    1. Yep, I’m generally happy as-is. I’ve never really felt the need to put that much focus on the social side of things and I’m pretty happy to do things on my own, so it’s not a huge deal, overall, but sometimes the little things like that can be really striking.

      I can totally relate on being a “regular” at a place as well. I was working nights at a place a couple years ago and a couple co-workers would regularly go to this bar after work (because not much other than a bar would be open at midnight) and despite going there pretty frequently, and having bright fuschia hair, I only ever got “regular” status with one of the bartenders.

      Liked by 1 person

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