A Bunch of Thoughts About Autism and Ableism

A few days ago, I learned that this month is Autism Awareness Month and ever since, I've been obsessing about it.

I have so many thoughts and feelings about the whole thing.  I'm not sure how to organize them.  

But I'm going to try. 

First I'll say that I THINK I am autistic. I've thought that for a pretty long time. I mean not decades. I didn't see Rain Man and think, Oh! I think I'm autistic too!

I remember that when I was a preschool teacher, I had some extra love, interest, and compassion for kids who were either labeled as autistic or seemed to be autistic.  I do think I realized I could relate to them in some way, but I'm not sure that I was considering labeling myself as autistic. 

There was a time between then and now where I had negative feelings about autism/aspergers. 

Fortunately I got over those feelings.

So....

Trying to put my thoughts together here.

I think I'm just going to list some feelings/ideas/thoughts.  OR....number them at least.

1. I get very offended and angry when people show sympathy towards someone regarding an autism diagnosis or when they learn someone has autism and they mention it in a gossipy/sympathetic way.  

2. I get annoyed when there's a post online giving major kudus to a popular kid and/or athlete for spending time with an autistic kid.  I really want to write something like Oh look at that very awesome autistic kid being compassionate enough to spend some time with that neurotypical person.

People get so much applause if they get caught on video accommodating an autistic person. But how many times, do we applaud autistic people for accommodating neurotypical people? 

3. I've only heard of imposter syndrome in terms of career and talents. But I think it can exist with disabilities, diseases, disorders, etc.  Well, I think this because I have it. I've had imposter syndrome with my eating disorder. I have it regarding my seizures...or whatever the hell is happening to my brain.  I have it with autism. Even though there are so many nice people in the autism community saying that self-diagnosis is valid with autism, I still feel insecure.  

A lot of autistic people on social media label themselves as autistic and use the hashtag Actually Autistic. I tell myself that I don't do this, because I'm less into it than them. Or that even though I'm totally cool with being autistic, it's not such a big deal that I want it to be one of my main defining features on Twitter and Instagram.  But if I'm honest with myself....If I actually got diagnosed by a professional, maybe I'd have the confidence to use the hashtag.

This week, I did consider seeking out a diagnosis. But I'm not sure if it's worth the money or time to do it just so I can have some extra validation. If it would give me 100% validation, maybe it would be worth it. I think, though, that even then I'd question it. 

And what if a psychologist or psychiatrist thought I was NOT autistic. Would I accept their verdict? Or would I seek out an expert that would give me the answer I wanted?

4. And now my feelings of ableism. It's complex. 

First of all, I've been victimized by it, and I have a lot of anger over it. 

The one that comes to the top of my head is some random stranger coming to my blog and being very combative regarding my obsession with Australia. And it wasn't the first time that someone has let me know that they think something is wrong with me...that having obsessions isn't normal/healthy/okay.  

Okay but here is where I have issues with the concept of ableism.  Who the hell are the ableists???? 

I've learned this week that there's a term used in the autistic community. Allistic. This is the label used for people who are NOT autistic. 

Many people with autism do a thing called masking. I'm not sure that I have this trait. But other autistic people complain about how they hide their autistic traits to fit in better among neurotypicals. 

So....

What if some of these so-called allistics are undiagonosed autistic people who have been masking so long that we and/or they don't realize they're autistic?

I feel like there's an us vs them attitude in the autism community. And I really don't know if the line between the two groups is that clear.

I'm not going to fall in the trap of saying, Maybe we're ALL a little autistic.

No. We're not.

But....

Even people who do not have enough traits to qualify as autistic may have some traits in common with autistic people. And even if they don't have autistic traits, they may have their own issues and quirks. 

Today I saw a post on Instagram advising allistic people on how to show understanding and compassion to an autistic person that's having a meltdown.  

That's cool and all, but what if an allistic person has an issue with THEIR brain that makes it difficult for them to handle another person's meltdown?

What if your meltdown makes me meltdown?

Back to my question above.

WHO are the ableists?

Who are these mythical people who have no physical or mental challenges or differences?

We have fourteen people in our DFW family.  I wouldn't count any of them as being "able". Divided among us we have diabetes, epilepsy, scoliosis, high blood pressure, anxiety, phobias, tics, diagnosed autism, probable autism, probable ADHD, gout, cancer, constipation, high cholesterol, COPD, tachycardia, DVT, cancer, kyphosis, traumatic brain injury, vision issues, restless leg syndrome, overactive bladder, speech issues, language processing issues, migraines, tinnitus, IBS, skin rash issues, tremors, myoclonus....and other things I'm probably forgetting.  

I doubt there's anything unique about my family in this regard. 

I don't think there's anyone out there who who, because of their super duper normal body and mind, could not ever understand what it's like to be disabled.  

I'm okay with the concept of ableism if we agree that EVERYONE is guilty of ableism sometimes...or at least has the potential to be guilty of it.

I think when an autistic person gets angry at an allistic person for ableism, they (we?) need to ask themselves (ourselves)...am I being ableist against the allistic person in someway. Am I not being understanding enough about his anxiety? Am I not being supportive enough regarding his painful migraines? Am I not being sympathetic about her alcoholism? 



Anyway...the other thing I want to do with this post is kind of go over my own history....explain why I think I'm probably autistic.

That being said, some of the lists of autistic traits I've seen are VERY broad. I kind of imagine people getting diagnosed with autism. Then they take every little quirk and decide it might be their autism. They mention it to another person who is professionally or self-diagnosed. They realize they have this trait in common...and that leads to it being seeing as an autistic trait.

Like....

Autistic Person 1: I'm a big fan of a British soap opera!

Autistic Person 2: I am too!

Then next thing you know...liking British soap operas is listed as a symptom of autism.

Anyway here's my list of things that I am sure I've definitely seen  listed as autistic traits and things I think I may have seen listed. 

1. I had fine and large motor issues as a child. I was pulled out of the classroom and seen by special ed teachers. I had physical therapy and occupational therapy. I had handwriting issues. I had problems in PE...did not do well with that physical fitness achievement thing they made you do. What was that called again?  I hated it.  

I couldn't climb the rope. I couldn't do monkey bars. I could never do a cartwheel. I was one of the slowest runners. I was one of the last picked for teams. 

I was late learning to ride a bike.

2. I've always had obsessions...or as other people call them high-interests, special interests, passions, etc.

3. I've always had social problems. I've never been the major outcast, but I've had problems making friends and keeping friends.

I didn't do at all well on job interviews, and I think that was a handicap at times to my career dreams and goals. 

4. I have sensory issues. I've always been a picky eater. I'm VERY picky about clothes. I don't like jeans. I rarely like pants, period. Though sometimes I tolerate very soft pajama pants. I need my skirts and shorts to be elastic...or at worst a draw-string kind of thing.

 I have an aversion to bright lights. LED is hard on me.  I also sometimes have problems with things in my peripheral vision.  LED lights in my peripheral vision really sucks.  

Sometimes I'll be walking down the steps. There will be a little piece of white paper or something on the ground that I see in my peripheral vision. This bothers me at times.

In our temporary housing situation, we haven't put anything on our walls. I realized how much I love this. I love having blank walls.  

I have problems with situations where there is a combination of words and pictures. Although...now that I think of it, I do pretty okay with Instagram.  But I struggle with coffee table books and museums

I hate tights and panty-hose.

I hate having dry hands. I have to frequently put lotion on my hands. Well, because of skin/circulation issues I actually physically need tons of lotion in the winter. My hands get horribly dry and chapped.  But even...when my hands are warm and in good physical shape but just a little bit not soft enough....I feel the need for lotion.   

The past year or so, I've been intolerant of having my hair down. I don't like how it feels. So I almost always have it in a ponytail.  Though...not when I sleep.  

5. I have (learned the term today) hyper-empathy. I feel sorry for inanimate objects. Such feelings have led me to spending too much time on Minecraft trying to rescue an animal. I also once lost a koala pincher thing behind a dresser. I stressed out a lot about that. I had to talk myself down from moving the very heavy dresser to rescue it. 

6.  I don't like making eye contact, but I do.

7. I've always been immature. When I was young, I saw a psychologist. She met with me and my parents; told them I was immature. I was SO hurt and offended by that. But now...I'm okay with it.

Looking now at this super long list of female autism traits to jog my brain. I'll just list the ones that really stick out at me and super-apply to me.

8. "Doesn't take things for granted"

9. "Often gets lost in thoughts and checks out"

10. "Experiences trouble with lying"

11. "Escapes routinely through imagination, fantasy, and daydreaming"

12. "Philosophizes, continually"

13. "imitates people on television or in movies"

14. "Mastered imitation"

And now they have a list of comorbidities...including some I mentioned above)

15. OCD (I think I have this but have never been diagnosed)

16. Eating disorder

17."Misdiagnosed or diagnosed with a mental illness"

18. "Experiences multiple physical symptoms, perhaps labeled “hypochondriac”"

19. "Since puberty has had bouts of depression"

20. "Spills intimate details to strangers" (this blog)

21. "Raised hand too much in class or didn’t participate in class".  Sometimes I think there's a bit of the Barnum Effect in this list. But anyway...

22. "Confused by the rules of accurate eye contact, tone of voice, proximity of body, body stance, and posture in conversation".  

Well...it's not that I'm confused about the rules. It's more that I struggle to follow them. I have a LOT of trouble with my hands and arms...where to put them. When I was watching The Good Doctor I noticed that Shaun (Freddie Highmore) holds his stomach in the same way I often do.  Seeing that made me feel a little better about myself. I guess it made me feel less alone. 

I notice lately that I'm tending to have my hands in the way that people with cerebral palsy tend to have. I have no idea why.  I don't know if it's just a habit I got into or if there's some kind of muscle weakness in my wrist.

23. "Questions the actions and behaviors of self and others, continually"

24. "Feels extreme relief when she doesn’t have to go anywhere, talk to anyone, answer calls, or leave the house but at the same time will often harbor guilt for “hibernating” and not doing “what everyone else is doing”. Holy shit. That's someone reading my mind right there.

25. "Dreams are anxiety-ridden, vivid, complex, and/or precognitive in nature"

26. "Highly intuitive to others’ feelings"

27. "Longs to be seen, heard, and understood". Definitely. But I think this may be another Barnum Effect kind of thing.

I think I'm going to start skipping the stuff that is too Barnum Effect. There's quite a bit of it. 

28."Young sounding voice"

29 "has occurrences of slight prosopagnosia (difficulty recognizing or remembering faces)"

30. "Feels significantly younger on the inside than on the outside (perpetually twelve)".  I think most adults probably feel younger on the inside. But...I doubt it's common for people to feel twelve.

31."Remembers exact details about someone’s life".  

32. "Has a remarkable memory for certain details"

And now I'm looking at comorbidities listed by Lord Wiki. 

33. gastro issues.

35. Epilepsy. I have too much imposter syndrome to say I have epilepsy. But I have myoclonus which could be a seizure, and my EEG was abnormal. 

36  I have a daily routine.  I don't usually have a meltdown if the routine is interrupted. But if I have to take many days off from the routine, I look forward to getting back into it. 

Sometimes I get caught up in the excitement around me. This might happen with extended social situations...for example being at the lake house or on a trip with people outside my immediate family. I'm enjoying myself but at the same time feeling out of sorts.  I then push myself to take a break from it all and do some of my quiet, solo routine kind of stuff. Watch one of my TV shows, read a book, do a lesson on Duolingo, etc. Getting back in touch with some aspect of my routine helps to ground me. 

37. (edited to add) I make rules for myself and have a hard time being flexible about breaking them. An illustration of this is that I have a 603 day streak on Duolingo.

Some of the rules, though are...just stupid and not really helpful.

An example is with my TV watching. (note: Most people will probably want to skip the next few paragraphs. I highly suggest doing so) 

A few weeks ago, I learned that Amazon Prime has old episodes of Coronation Street.  I was pretty excited about that. My parents watched a few episodes with me when we were staying at their house. 

My problem was finding a way to watch old episodes after I left their house.

My rule has been that I can watch one episode of CURRENT Coronation Street a day. If I miss a day, I may not catch up by watching more than one episode.

I told myself that if I managed to catch up, I can watch an old episode of Coronation Street. How would I catch up? Well, it would have to mean Hulu slows down on posting episodes.

One day I realized that I don't want to have to wait for that to happen. I considered adding old Coronation Street to my To-Watch List. But I had made a rule that I can't have more than 150 things on that list...well, unless (and this too was a hard amendment to pass) Tim and I watch a show, and it turns out that I want to continue it, but he does not. 

My process is that I have a second list on IMDb.  When I finish one of the 151 TV shows or movies, I add the next thing on the IMDb list. Or sometimes when I use Random.org, the show or movie is no longer available, and I use the IMDb list to replace it.  

I considered adding Coronation Street to the IMDb list, but that list is super long...like in the thousands. 

This is where I had to do some self-therapy and convince myself to stretch/break the rules.

I pretty much negotiated with myself. I added Coronation Street as #152.  But I decided that 152 is way too long. So what I decided is that I would bring the list down to 72 by no longer replacing shows and movies on the first (random.org) list with movies and shows from the IMDB list. When I get down to 72, I'll start adding things to the list again.

It was kind of like I made a compromise with myself. Okay. Yes. You can add old Coronation Street IF you promise to shorten the list. 

And yes...I know the above paragraphs are boring, complicated, and hard to follow.  I think most neurotypical people, who see something they want to watch, would simply be like Cool! I want to see that; then they would watch it as soon as they had some spare free time.  

38.  I've not been sure about is the whole stimming thing which apparently is a huge trademark of autism. I don't do a large amount of fidgeting. I bit my nails in my youth and sucked on a ton of pens. I'll shake my leg sometimes. But I don't think I do any more fidgeting than neurotypical people do. 

I do have something I need to do when I'm very stressed, having strong emotions, am overstimulated, etc.  And that's walking  This can be going outside and walking, pacing inside the house, or going up and down steps.  I think this is a need or habit that I have more than typical people.  I'm not sure whether it would count as stimming.

I'm thinking, though, that maybe this is why I have a really hard time on long airplane rides. I'd be better off if my coping mechanism WAS fidgeting.  

Well...now I've just realized as I'm writing all this...which IS kind of stressful...I'm rubbing my fingers back and forth on my lips. So I probably have more fidgeting stimming that I consciously realize.  

I think I bite my lips too. But the only thing that is at an unusual (not neurotypical level) is the walking.  


I want to explain more about my social issues.  I feel in terms of social anxiety...there's often the question of whether you prefer small groups and whether you tend to have a small number of close friends.

Well, I feel I'm the opposite.

I am fine at a big party if everyone is dancing, and I'm among a crowd. What's hard for me is when things become one on one. I'd rather be at a big party with lots of people than go out to lunch with one person...unless it's someone I'm close to. And even then, I'm often anxious.

I'm okay one on one with writing. I might get along great with you through emails or texting...or social media. But things might be totally different when we meet in person.  There are people I've been emailing and texting a lot lately. I get nervous about the idea of one day getting together with them in person.

I'm NOT nervous about meeting new people. I love meeting new people. I love strangers.  I love having short chats with people in line at Disney World. I love connecting with random people. But...if one of them gave any hint of wanting to become friends or meet up again later, I'd get anxious and stressed.

Shit.

Now that I think of it....maybe this is masking. I didn't think I do masking. I thought it was an autistic thing I did NOT relate to.

I can act very outgoing and social. I can wear that mask, and I even enjoy wearing that mask. But when things become more intimate...when it's one on one and/or the time together is stretching out a bit, I struggle to keep the mask on.

That being said, wearing a mask, in that way, is not at all unique to autism.  Who doesn't sometimes struggle but pretend they're not struggling? 

Now I'm asking myself. Okay. If I didn't wear the mask....if I showed my true self at parties or other social events, how would I act?

The answer is I'd be reading, writing, or watching a TV show. I'd be at my niece's Bat Mitzvah reading a book in the corner. Or I'd have my headphones on watching my British soap opera.

There's this idea I'm getting from some autistic people that masking is bad and that autistic people shouldn't have to mask. 

IF my pushing myself to be a bit social at social events is considered harmful masking; then I'd disagree with these people.  

I think some amount of masking is needed by all of us to get by in this world and get along with each other.  And by all of us, I mean everybody; not just autistic people. 


 



How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts 

No comments:

Post a Comment