“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™.

Alexithymia Club

There’d be a description, except it turns out that no one could figure out how to describe the club.

Humor aside, alexithymia is a fun little condition wherein an individual has difficulty identifying their own emotional state. There’s no diagnostic criteria within the DSM V as there are honestly quite limited studies done on it. It was coined in the 70s by a psychiatrist to try and explain why some patients basically have no story to tell for why they do things like self harm or who have severe struggles putting their feelings into words.

Despite there being no diagnostic criteria within the DSM-V, there are, some screeners that you can do to see if you might potentially have alexithymia. Feel free to hit it up here.

Autistic individuals may find this particularly interesting as while alexithymia may only be present in up to 8% of males and 2% of females, it looks like the percentages go way up with ASD. Various studies have found different numbers, but it looks like it about half of us have alexithymia.

It does kind of make some sense, no? Difficulty recognizing our own emotions at any given point in time might just make it more difficult to recognize emotions in others which can definitely impact social skills and so on, just kind of piling on to the lovely pile of things that comes with the whole package.

For me, on pretty much any given day, at any particular moment. If you ask me how I’m feeling, even if I’m really, really thinking about it and trying. I’m just going to be feeling “meh”. It’s just flat. There’s nothing really going on.

I get heart palpitations that I presume are anxiety related because they only come on during times that are logically high stress, but when the palpitations occur, I am not even aware that I feel any different than any other time.

I usually won’t even realize I’m stressed until I’m way passed the point of no return, so to speak. Easily irritated and wanting to rip my hair out and hide and cry? Yep, obviously I’m stressed. If only I had realized this earlier and could have taken a break.

As I have gotten older, I have gotten better at identifying some emotions. Mostly negative emotions. Have you ever noticed that there are only really focal classes and seminars and such on negative emotions? How to identify negative emotions and manage negative emotions? It’s recently been bugging me that there aren’t really similar things for telling the difference between joy and happiness and elation. What is the difference between these things?

Just like frustration and anger and rage are not all the same negative emotion, even though they are all on the “anger” spectrum, but I honestly have no idea what the difference between the scale of “happy” spectrum is.

There are a few ways to help improve the recognition of your own emotions, even for those of us who struggle: regular journaling, reading, therapy, etc.

Journaling out your thoughts and emotions each day is a great way, albeit it will feel really silly and actually be challenging when you start. Once you start trying to name out what you feel, it’ll help you learn to start identifying them more and more frequently.

Reading, well, of course. I’ve always been an avid reader. Doesn’t even need to be novels or anything, just other people’s stories, manga, or whatever else you can find. You will find that in pretty much all versions of a story out there, emotions are well documented and explained. The more versions you read and explanations behind them, the easier it will get to identify it within yourself.

Therapy is pretty much always a good one, a trained specialist working with you is an unbiased source who has all of the expertise and experience to make sure you don’t get led astray while working on it. They can also help you work through other problems at the same time. I’m super pro-therapy, provided that you can find a therapist that you mesh well with.

For me, personally, it’s been a mixture of a lot of self-reflection and reading to get a better idea of what makes me tick. Reading other people’s experiences. Reading fiction. Reading non-fiction. Reading a ton of stuff on reddit. Reading pretty much anything I can get my hands on pretty much anywhere. Thinking about how I reacted in various situations. Near-constant self-reflection (which is what journaling also touches on).

I’m still not fantastic at it, by any means. But, I will say that I am getting better.

Should I Get Diagnosed?

This is a super personal question, there is honestly no right or wrong answer to it. If you’re here, then you probably have been through a lot of reading and basically come to the conclusion that you feel like Autism is probably the right answer for you.

You’ve likely seen the statistics on how girls who aren’t don’t need more support go under diagnosed by the system. The research was done primarily with boys, and all of the data was biased toward boys and how they present. It’s not exactly hard to make it to teens or adulthood as a lady without a diagnosis.

For many, the self diagnosis is really enough, it answers the questions they always had about themselves. They read the stories, they feel like they finally found their soul sisters and they suddenly had this massive weight they didn’t even know they were carrying pulled off of their shoulders. The relief is enough because they finally know that they aren’t alone and that other people feel the way they feel and see the world the way that they see the world.

There’s also likely some anxiety that they will be dismissed, experts will see them make some eye contact and just go “well, eye contact happened, not autistic, have a nice day” (and honestly, that might happen). It doesn’t mean that your journey is over. Get a second opinion, or a third. Research for better specialists, ask your general practitioner for better specialists.

For others, the official paper that says “yes, I do have this thing” is important. For me, it is important. It was important for me to get it for my daughter. I wanted to have the “yes, it’s true, I really can’t handle this unless I have X to help me out” or “no, my daughter can’t do this situation the same way as the rest of her class, but if you let her take breaks in a quiet room she’ll be able to handle it”. For my daughter, I really wanted her to know throughout her life that she isn’t broken, she is just different.

When I approached my daughter’s pediatrician about getting my daughter assessed for autism, we had the general conversation about why I believed she is autistic and then I told him that I know that girls have a very hard time getting an accurate diagnosis and I wanted him to recommend to me not just any specialist but I wanted him to recommend to me specialists that he knows have previously worked with girls who were on the “higher end” of the spectrum. Specialists who had worked with girls who present similarly to my daughter. I specifically told him that I was not interested in approaching this through the school district because I wanted to reduce the likelihood of getting the older school of thought of autism only presents this way because of research in boys.

Her pediatrician printed out the normal list and he went through each of the referrals that the office can make and he circled three or four, but when he got to a specific name on that list, he said “this one, she recently did a fantastic write up for another one of my patients who is very similar in behavior to your daughter”. And she was fantastic. Utilize your resources as much as you can and be clear that you know there is a struggle in diagnosis for girls and women and that you want to try and limit the search for specialists that understand that there is a struggle for girls and women. Leverage your doctors and psychologists if they are on your side to help you in this search as much as you can.

In my opinion, there is no harm that can come from a diagnosis, only benefits that can come. But there is no need to disclose your diagnosis to anyone unless you want to after you get it.

Of course, all of this is assuming that you have ready access to decent healthcare and professionals who are caught up with the times and won’t need to hop through multiple professionals and/or travel extremely far in order to find an adult autism specialist.