Autistic Masking, Late Diagnosis, and Dissociation: The Toll It Takes on Autistic Mental Health

CW: Gaslighting, self-harm, intrusive thoughts

(Long Post, Summary/Conclusion paragraph at the end)

This blog post came about after having a dissociation episode after watching Westworld a few nights ago. This post has helped me realize the reason and cause of my dissociation, likely from being an undiagnosed autistic person for 25 years of my life.

The Undiagnosed Autistic Life

Imagine all your life, you’ve been told that you just seem a “little” off. Just, you know, a little different. When you give your opinions, you’re either ignored, or simply told it’s “not a big deal” when you were not trying to complain, you were trying to collaborate. Whatever you do, whatever you say, is annoying, is rude, is unimportant, is inappropriate. Other people make excuses for you. “Oh you know, that’s just how she is. She’s just a bit different from the rest of us.”

FantasticMrFoxGif

Imagine instilling this idea into the core of who you are. You decide to relish in the idea of being “weird” because there is no other option. You wonder why it is this way. You’ve created your own identity around what other people perceive you to be, in order to “get by.” You see this as the only way to survive the world.

Oftentimes, you genuinely wonder if you are an alien. You wrote about aliens since you were 8 years old. You like reading sci-fi and supernatural books. People joke about you being a vampire, or an alien, and you joke back, masking your anxiety. It sounds so silly, doesn’t it?

Imagine that you have been told your entire life, looked at your entire life, as just being a little bit “different.” Wouldn’t you wonder? Wouldn’t you try to explain it, when people think you don’t have emotions? When people think that because you sit still and don’t move around too much, that you must be fine emotionally? When your ears are constantly hurting from sounds while others deem your need for quiet to be complaining and annoying and nothing to be concerned about? Wouldn’t you wonder just a little bit? Why you’ve always seemed a little bit off? How you can actually be the same species as other women who do “women-things” much better than you. How they are seen as much better than your version of a woman. How they suggest that you get involved in “woman-things,” that you must love them. How you feel when you try them, are coerced into them, and hate the experiences they put you in. You feel like you are failing. You don’t know what you are failing, but it feels very important. They say you’ll enjoy it, just try it. You do not. It is horrible. You wonder why other women enjoy this and laugh and smile. You wonder why you don’t. You are failing. You distance yourself from all things feminine. You are not “one of them.” They laugh at your greasy hair and probably insult you behind your back.

Junior High

You are even more stuck on this question than before. People do not engage with you. You don’t know how groups form around you, and you hear chatter left and right. Wouldn’t you wonder? Wouldn’t you wonder how other people so seamlessly talk to each other? Where coughing, clearing their throat, seemed to indicate something from others, some sort of message? You try to understand how they seem to send signals that you don’t hear. The only logical possibility you come up with is, that maybe other people could read other people’s minds. You realize that it would explain all of these seamless interactions you have seen and observed for your entire life, that you couldn’t really unravel, and of course could never enter into. It would explain why people laughed at things that didn’t seem to matter. It would explain why people act as if you are invisible, why they do not invite you into their circles. It would explain so much of it. It would explain why you are inaccessible to their style of communicating.

You spend an entire year having intrusive thoughts because you are worried other people can read your  mind. You dig your fingernails into your neck to stop them. It seems to help very well. You do this mostly at school and rarely at home so people don’t know. You start doing this when you are angry. No one notices. When she asks, you tell your mother the bump on your arm was a mosquito bite, but it wasn’t.

After about a year, you decide that people probably can’t read minds. You try to “relax.” You haven’t seen enough evidence. You try to forget that you ever thought of it in the first place. Sometimes you forget you used to think this, and store it in the darkest part of your mind and put it away for a decade. You still have intrusive thoughts from time to time for the next year or so, but you gradually somehow get rid of them. You stop fighting them. You still don’t understand why people seem to interact so easily, and why you don’t.

High School

So many years of thinking you’re different, that you have to assimilate, so people don’t notice, so people don’t worry, so people don’t see you as a “little strange”, takes a toll on you. You try to keep your head down (literally), so as not to be noticed. You wonder how people can stare at other people’s faces and eyes all day. Eyes hurt. You decide that not talking is a way to reduce the number of potential failures you have and isolated feelings you have at school. Not talking, and reading books is how you manage. You are highly anxious and write angsty poetry, because you are a teenager. You are angry at the passing bell. It hurts every time, and you brace for the anticipation of it. You are always very aware of the time, to prepare yourself. You are angry at many things but you keep quiet. It’s the easiest way to deal with everything. People don’t seem to want to be friends with you anyway, even though you tried for a few weeks. You feel like a ghost, and the evidence points towards this. You walk out of class, and the teacher looks at you, laughs, and says they didn’t realize I was in class today. I was in my regular seat like always. It wasn’t out of malice by any means. I like that teacher – I didn’t blame her.

I was just a ghost.

Masking and Dissociation

After years of thinking this way, of dealing with adolescence and what exclusion, what lack in social skill, comes with that, my mental health took its toll. From pretending so much, in so many different spaces, I’d often see things outside of my body. I’d often feel like I was watching a movie as my body said something that seemed, less “different,” and more “appropriate.” I’d often think in the back of my mind, what would my mother say? What would my brother say? What would my father say? I’d insert a similar inflection and facial expression, just because I had seen my mom interact with others for my entire life. It made it sound believable. I knew what she was doing from a physical standpoint. I just didn’t know why she did it that way.

Now, Diagnosis
Imagine finding out a year ago that you are autistic. Imagine realizing that it explains all of these things that you’ve dealt with for most of your life. Imagine finding out that no one else’s ears hurt with loud/moderate noises. You pretended those loud noises didn’t hurt your ears for no reason. You didn’t get any rewards for it. In fact, no one even noticed. You realize that complaining you have to go “be a person” when going to social events, is not common but still is a common thought in your life. You realize that your brain is different compared to 95% of the population. You realize that you were not just “imagining” feeling different, that you were not a hypochondriac. That you had valid feelings and opinions. You are different.

This realization does not make anyone else understand or accommodate you. In fact, it creates confusion. The therapist, who diagnosed you, says you are doing “very well” in life during the diagnosis interview and that you are “very high-functioning,” then back-tracks and realizes what they implied. They were surprised. They must have been expecting someone less communicative (and then would assume them to be “low functioning”). The therapist asks if you have anxiety. Your heart is pounding 100 beats per minute. You say “no.” They say “ok” and leave it at that.

Friends say, “oh but you’re just a little different! Everyone’s a little different!” They say that it couldn’t be, that you are so “very high-functioning.”  They project their ideas of the word “autism” onto you. There is even more confusion. But now you know who you are, even while they still gaslight you and tell you that you are rude or inappropriate, and yet, not autistic. You are just, still, a “little different.” To other people, you will always be a “little different.” Other people do not care about your own understanding of your brain. They still want you to be the same. They want you to “function.” They want you to be “appropriate.” They can agree you are autistic and then complain that you “dress like a child” when you were only trying to prevent a meltdown.

Some days I cannot tell whether I am being my mask, “being a person,” or being me. I am still working on that.

After Diagnosis – Westworld.

You still have dissociative episodes when saying something you know that isn’t really from you. You try to say things appropriately, using scripts. You are in the car with your boyfriend talking about youtube videos and suddenly see yourself outside your body. You have just learned about the term dissociation. You say, while dissociating from yourself “Wow I’m have a terrible dissociative episode right now.” It doesn’t help. You can’t do anything about it.

Imagine trying to watch a show that prides itself on figuring out What is human. Imagine seeing “robots” treated as things. Imagine watching as they become less of a “thing” and more of a sentient person. Your brain is breaking around this occurrence. You do not want to think about it. You think about what it feels like to be treated as a “little different,” in the back of your mind, a thought churning.

If consciousness doesn’t have to be human,

then what am I?

then what am I?

then what am I?

then what am I?

Am I human?

Imagine not getting to the root of the cognitive dissonance. You hear jokes about Data from Star Trek. You hear how “Zuckerberg is a robot” from your friends and colleagues.

You wonder whether you are a human. While growing up. While getting gaslighted by your family, by people who are well-intentioned and who love you. You do not understand why every single thing you say is read as a complaint, or ignored. Imagine not feeling that love. Imagine knowing there’s something a bit “off” about the way you work. Imagine that one silly question can envelope your entire life because of the way other human beings have looked at you and interacted with you. You still wonder some days.

Imagine how many interactions it took me to feel this way. Imagine how many people had to look at me differently, ignore me, assume my intentions, and disregard me when I offered genuine emotion.

Imagine what acceptance would have done for people like me.

FantasticMrFoxGif

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Schools Don’t Care about Disabled Students

[Please let me know if I get my language wrong in this post – new to this.]

I had what felt like a completely useless and emotionally draining day today. However, I had a very educational, useful day as well: I got a taste of what disabled students, specifically physically disabled students, go through everyday. I have been dealing with what I thought was going to be a temporary problem for about a year. I have learned recently that it may very likely be a chronic injury, however.

 

My Disabilities:

I have had so many “half” problems. At least that is how I’ve seen it. I never thought of myself as disabled only because people don’t see my sleep disorder – and I have medication to treat it, for the most part. I’m about 80% back to what I was before the really bad symptoms hit. But it’s not something that is noticeable by other people (which can be frustrating at times, but also a privilege, similarly to masking as an autistic).

My “problems” I have are often things that cannot be directly solved and yet people assume still have no great significance on my life. Here are some examples:

  • TMJ Syndrome (literally walking in 30 degree weather for 5 minutes hurts my jaw, running in general hurts my jaw)
  • idiopathic hypersomnia (constantly dreaming, setting 10 alarms 1.5 hours before I have to wake up, generally sporadic sleep quality not correlated with number of hours slept – usually sleeping more makes me more tired).
  • possibly  undiagnosed (3rd type) Ehlers-Danlos Syndrome (no dislocations yet, mild joint pain daily)
  • Hyperacusis/auditory sensitivity

And now, to add to that list:

Messed up foot with no known diagnosis, even after 3 different diagnostic tests. Confusion from doctors of how I even did something like this – even though it was originally presumed to be a “minor” injury. Now it is (likely) a chronic injury. Essentially a long amount of walking = pain. More than 0.2 or 0.3 miles of walking = pain. Like with all of my other problems, there is unlikely to be a “fix” for this one. Sometimes I feel like doctors are so useless for my problems, and I should’ve never even gotten it checked out, and kept walking on it. I don’t think it would be much different if I had.

I have never asked for accommodations at my school. I don’t know how it works, and meeting with strangers oftentimes results in nearly traumatic experiences of misunderstandings and shutdowns that I will remember for years (I indeed had one of those today). Having people misconstrue your body language constantly, and either instantly become mad at you, or infantilize you and treat you like a child who knows nothing, is hard. It’s emotionally taxing.

I had heard I should get a medical parking permit from my school, after thinking of convoluted strategies and ways to make my walk a little easier, like solving a puzzle every morning just in case there wasn’t enough parking. Shuttles are on a limited schedule during the summer, which means that if I want to not walk from/to the parking lot, I have limited time at work. This has been very frustrating.

So, deciding to get a permit, I got a doctor’s note and ended up meeting with approximately 3 people, all at different locations of course (so, walking was involved). I did everything correctly -talked to the right people. I didn’t know much about the permit so I asked about it, trying to clarify information. No one had really said what it allows you access too. I had assumed (because I’m ignorant) that one could park in faculty/staff lots, or at least one of them, with this permit.

Only after I was forced to walk about .4 miles to go to a different office and back, did I find out that, guess what – the medical permit literally doesn’t do anything in the summer. Do you know why? Because (at least one person informed me) a year ago they changed the rules so that people who have a medical permit can only park in student lots, not any other lots on campus. I can literally already do this.

I obtained a “permit” that did nothing. Absolutely nothing. And no one had told me.

At this point, this was the thought rolling around in my head for the rest of the day: Disabled students are fucked. That’s all I could think. I was already perseverating from meeting those strangers, after having a shutdown and hearing the same nearly traumatic Neurotypical Worry I always do. But that didn’t matter anymore – this one thought, it really stuck in my head.

I literally did all of that, and wasted an entire day of productivity figuring this out, as well as being completely emotionally drained from shutting down talking to a stranger, for NOTHING. At any point they could have told me this – like you know, before I made that 0.4 mile walk there and back to their same office, where they then told me this. When I specifically saidI don’t really know how this works.” I honestly don’t think the administration wants anyone to know about it, so then no one will make a fuss, or you know, use the permits, even if they’re mostly entirely useless for the majority of people who can use them.

Why I Am Angry

I am so upset.

I didn’t know much about the disabled community before I found out I was autistic (or before I was on twitter for that matter). I had always thought it was reasonable when someone was upset or angry regarding lack of accommodations, I just didn’t see it as my thing to be involved in. And I didn’t see much posted about it in general in social media – or in media, period.

I had always thought it was reasonable people were mad, but I didn’t truly understand why. And I probably still don’t truly understand it from that person’s perspective in a lot of circumstances. But today I got a taste of what it’s like for people to not give a shit about you. I found out that the school restricted medical permit parking and literally made it harder to get because there was less parking around campus in general due to construction. Yes – that’s what they said. Because there is less parking. It makes my blood boil.

So, because there’s less parking, you’re going to make it even more inaccessible for disabled people? Really? They’re more worried about taxpayers’ money than their own disabled students’ lives.

[Note: I am a hugely privileged human being. I am white, and I do not have to think about money like other people do. I am going to be fine. But people who do not have this privilege in life are not. I have no idea what they have to do to get to places. And if even a school, something that is supposed to provide students knowledge, won’t accommodate them, and isn’t accessible enough to literally allow people to go to work everyday? Then what about the rest of the world?

I was (and likely still am) very ignorant about these issues. I do not know a lot of things I should about disabled people’s experiences and lives. I know my own, but I understand that my experience is very limited – although I am autistic, and have always been autistic (though I wasn’t diagnosed), I did not have my sleep disorder or any physical issues really until a few years ago. My experiences are likely very different from a disabled person who’s been disabled from a young age. Although I can say yes, I am disabled, no one seems to think so – and I have rarely ever looked at myself that way, as I didn’t even know I had hyperacusis or auditory sensitivity until just a few years ago, even though I’ve been living with it my entire life. I’ve constantly been told, especially as a child, that I don’t have any “real” problems, and my real ones have been ignored. Similar to being autistic, I just assumed that I couldn’t possibly be disabled, as ridiculous as that sounds. I don’t have any problem saying I am disabled – but I feel like a fraud due to years and years of ableism from people saying that “we don’t have it that bad, so you should be grateful!” I don’t even allow myself to try it on as part of my identity. And that’s fucked up.]

 

I did not hear about this change to the medical permit. I didn’t even know there was a medical permit. However, it is clearly a joke. The campus is giant. There is no way all student lots are close enough to the buildings people work in. Every single student parking lot is more than 0.2 miles away from my building. Every. Single. One. And I think that’s one of the best case scenarios, in terms of distance, for most students. And they have just recently taken away even more shuttle buses for this summer and upcoming year.

The “alternative options” on their website are – take public buses, bike (can’t), or commute (make someone give you a ride, not that anyone I know lives near me). For me, that just leaves – take public buses.

You shouldn’t have to take public buses because your school won’t even allow you to park in a mostly empty parking lot in the summer (or a full lot in the fall!). That means the school is doing something wrong. Decreasing accessible parking for disabled people because you have a parking issue in general just shows us where your the priorities are.

What I learned today: Disabled people are fucked. And I’ve been ignorant.

I want to know how this rule changed, and if it had to go past the student committee.

I want to know why my school doesn’t care about disabled students. 

I wish I had cared sooner. 

 

 

 

Neurotypical Worry

I hate when people worry about me. People often get confused because when I start talking about a problem in my life, or especially when they asked me about a problem in my life, I often deflect or laugh even if the situation isn’t funny. It’s because I want to be done with the interaction as quickly as possible, so I do not get overwhelmed.

 

Why It’s Hard

They ask me what is wrong or what is going on. They may already sound concerned. This makes me feel bad that I’m taking up their time, so I either say “oh it’s nothing” or I do try to explain the problem with as few words as possible. If I do try to explain it, I may start choking up because I am feeling the experience of dealing with this problem as a whole – not in that moment, but from whenever it happened onwards, or I may be taken back to that place in my mind, with all of the emotions I had during the event or multiple events. And so I naturally become more frustrated having to think about the problem, but I have think about it in order to explain it (ironically, when I get emotional I have a hard time talking, so by thinking about it I’ll have a harder time explaining it). So I start choking up, and because the person sees me choking up or looking down in real time, they get even more concerned. They think, Oh, this must be really bad! Otherwise she wouldn’t sound so upset right now! Which of course, is not what is happening at all. In fact, it’s often the opposite.

So after seeing that I am overwhelmed, the person interrupts me to interject to say one of these things:

  1.  Oh I’m so sorry!
  2.  That must be very difficult for you!
  3.  Have you tried this solution or looked into X?

And of course, what I really want to say is:

  1. It’s not that bad, I’m just frustrated for needing to tell you because talking is hard.
  2. It is kind of rough but it might not be comparably, and you’re making me feel much worse about it by saying this and making me feel bad for myself that I deal with my problems internally for so long without telling anyone, because it wouldn’t matter, and it’s too hard to deal with telling people in the first place and dealing with neurotypical expectations surrounding that.
  3. Yes, yes, yes, I have tried every solution. I’m likely only telling you about this problem because I have done literally everything I can to research the problem and I literally have to tell you what is going on in order for me to function on a daily basis, and so you worry when I may be acting differently or may be out a lot, or when I change any other thing on a daily basis because of this problem. Telling you about my problem is a preventative way of dealing with it in the moment and getting caught off guard by someone’s sympathy and being so overwhelmed and concerned with what’s expected of me that I just break down or don’t respond properly. It has nothing to do with me, it’s about making sure I don’t trip myself up with further interactions with other people when this problem is brought up by others.

 

My fake, protective answers are:

  1. “Oh, it’s fine, no worries”
  2. “Eh it’s actually not that bad”
  3. “Yea.. it’s not really a fixable problem” (or sometimes, just nothing, “…”)

When it Backfires

Unfortunately, and as you can probably tell, these don’t always work so well.

And then the other assumption, if you mention your problem in detail, even if completely neutral (i.e. “Yea, this happened last week..[describes situation]”), is that you are just complaining. You want sympathy and you’re just complaining because you want others to feel bad for you. That’s why you talked about it so much!

 

When in reality, you talked about it in detail because the details actually matter and I want the other person to understand the seriousness and the reason behind why I am mentioning it. I actually would love if people were not sympathetic towards me when I mentioned this. That’s not what I’m asking for. I’m just trying to explain why X thing will be hard for me to do. And I’m trying to get them to take it seriously, since of course I had never mentioned the problem before, even if it was going on for an entire year. But the assumption is that it is something “sudden” because I didn’t talk about it, so now if I talk about it “excessively” I must just be complaining and have no real point to what I’m saying. Whenever I talk about myself, it’s usually to make other people understand, and not because I ‘like’ talking about myself. I actually hate talking about myself verbally to other people. I fear that I may be perceived as cold, arrogant, uninterested in others, or smug. It’s so befuddling to me that other people think my internal motivations would be to gain sympathy or attention, especially when I rarely talk about myself to my peers (unless I am friends with them of course).

 

Talking with Other Autistic People

Here’s the thing. Because a lot of autistic people don’t have that huge inflection in vocal range that neurotypicals do (or at least don’t use it the same way), when I talk to an autistic person about my problems, I rarely ever have that same problem when conversing with them. One of my family members is likely autistic, and I find it so much easier to converse with them about my problems compared to conversing with my neurotypical family member, simply due to the vocal inflection of “worry” that NTs seem to be able to drum up at will. That inflection is so overwhelming and makes me feel so guilty, as if I am attention-seeking, or making a big deal out of something, that it very commonly drives me into shutdown.

 

Do:

  1. Listen to the autistic person about the problem.
  2. Consider that the autistic person may already have a solution!
  3. Ask if they would like advice, or no advice.

Do Not:

  1. Infantilize them via tone of voice/body language/phrasing.
  2. Assume you know more than them regarding their own problem.
  3. Tell them what they should do.
  4. Project your own worry onto their problems.
  5. Ask why they seem upset, or expect them to talk about how they feel, for the love of god!

Update: Doctors Visits and (lack of) Judgment

For the first time in my life, I disclosed my diagnosis to a doctor. And for the first time in my life, they took my problems seriously and listened to me. This is very likely not a common experience for autistic people (at least, that I know of). To me, I felt like I was playing the lottery by going in there. And somehow they actually came around to listen to me. So I’d like to share my experience and the things doctors can do (very small, not time-consuming things) to give better respect and trust to their autistic patients.

I wrote and printed out a slightly edited version of my previous blog post before my new doctor appointment. The first page disclosed my autism diagnosis and explained alexithymia to the new doctor. On the second page, I wrote about my medical issues and my medical history over multiple pages, and boldened the really important parts.

The Visit

I got called in, sat down in their office, and the doctor asked me why I was there (why I made the appointment). I somehow was able to speak alright at this point, probably because the waiting room wasn’t too loud and everyone was pretty quiet – people didn’t shuffle about, and there was the world cup on tv with no volume, which I was able to focus on.

So the doctor asked me why I was there, and I told them it was because I needed a new doctor as I didn’t have one anymore and it’d been a year, and then I tried to explain the main medical issue for why I was there. I still had my printed paper in my hand. They asked if I had seen a doctor about it before, which is when I turned to the 2nd page that described the medical history and gave it to them (didn’t have the disclosed paragraph on it, that was on the first page). Their immediate response was “what is this?” as is quite a common response of doctors when they get a piece of paper for some reason (I honestly don’t know why). This is where my memory gets a little fuzzy on the details. Essentially I said “I’m not very good with words so that’s why I have this” and pointed to it. They then flipped to the first page and must’ve read the first one or two sentences, and then flipped back to the 2nd page and looked at it.

They (politely, not condescendingly) explained that you cannot simply just get referrals, and that people need to do diagnostic tests. I completely agreed and again said “I know I’m just not very good with words” and kind of stopped speaking. My anxiety was getting worse although I didn’t realize it at the time. Then they finally started reading the relevant medical history and each time they read a sentence, would ask me a followup question (something I was unfortunately expecting). I tried to answer the first one and got a bit choked up. Same with the second question, and added “that’s why I brought the paper.” By the third question, “Why didn’t the doctor do X?” I started tearing up, looking at the ground, and didn’t speak. They got out of their office chair and walked up to me slightly and quietly said “This is a safe space here. You’re okay.” 

I really, really appreciated this one gesture. It made me tear up more in relief, because literally no one has ever said that to me. They didn’t ask me why I was crying, or why, or how I was feeling. They just said “You are safe here.” I was suddenly less worried about expectations to speak verbally or act a certain way.

I also really appreciated what they did afterwards. Then they decided to read the entire paragraph aloud, which nearly answered all of the questions they had in the first place (and if they had read the first page fully they would’ve known this, although to be fair I didn’t show the first page to them originally). They didn’t just ignore me and read, but responded to what I had written after reading it out loud each time. They didn’t ask anymore questions directly to me (didn’t look at me), but rather looked at the paper and kept reading when they asked, which then very often answered the question. After this conversation, they asked if they could have a copy of it. I was so happy they asked, I said “You can keep the whole thing! That’s why I wrote it down!”

These small actions add up to real accommodations.

Ironically they did end up responding to and agreeing with most of what I had written (I do research my problems a ton).

 

Things they did that were helpful:

  • They presumed competence, even when I couldn’t talk.
  • They told me why they were referring me and what I needed to do to make an appointment
  • They told me exactly what diagnostic test I was getting and why, and explained why I needed other tests (I need bloodwork for X  reason because it might implicate Y during the imaging test).
  • They told me how to schedule my next appointment in the office (who to talk to, showed me who they were) and when I should schedule it to get my results back.

Things they did not do that were helpful:

  • They did not try to get me to speak when I was looking at the floor and starting to tear up.
  • They did not get annoyed or impatient that I wasn’t responding “correctly” or quickly.
  • They did not talk down to me or infantilize me (they talked in a normal tone, like I was an adult just like anyone else).
  • They did not assume that I couldn’t understand what they were saying, just because I couldn’t talk.
  • They did not tell me my problems weren’t a big deal, and did not chastise me for decisions I made in my previous medical history (didn’t say “you should’ve done X” or “why didn’t you do Y?”).
  • They did not make vigorous eye contact to see if I would look away, or try to see how I react to certain social things like tone of voice.
  • They did not refuse to treat me.
  • They did not refuse to read the paper explaining my circumstances.

 

At the end of the appointment, they looked at me (not directly) and said “We’re going to figure this thing out.” That is the first time I have ever heard someone say that to me, let alone believe it.

I know this is not something that happens often (and I do think part of the positive response was due to me saying I am a neuroscience grad student as for some reason that gives you a bit more respect from doctors – I really don’t see why it should), and that many interactions may not play out like this for other people. But I am very happy that this doctor allowed me to communicate the way I needed to. If I hadn’t done this, I likely would not have gotten the referrals I needed to find my medical issue and get treated for it. I likely wouldn’t have said I had a problem at all verbally. It’s important to let doctors know that they don’t have to do much to accommodate us and treat us with respect – and it may greatly impact an autistic’s life. It did for me.

 

Doctor Visits and Judgment

This is a draft I wrote to potentially have a doctor understand me. I have no idea if it’ll work and it could very well backfire on me. I already had a meltdown after calling the receptionist to schedule the appointment (as a new patient to a doctor) because they wouldn’t answer a simple question I had, and they already had seemed to be in a bad mood to begin with. I didn’t want to book the appointment if I couldn’t get an answer and was confused as why I wasn’t getting an answer and said so. I realize now it seems like their real answer was “I don’t know” but they didn’t want to say that (or maybe couldn’t? I’m honestly not sure). But they were very mean and I felt like I wasn’t supposed to ask a question when I had every right to ask. They eventually almost yelled at me as to whether I wanted the appointment or not, so I angrily said I guess so, and then they hung up on me. It was probably only a 5 minute conversation but I literally felt like I had just been bullied. I think they thought I was annoyed because they asked me to speak louder twice, and the third time I kind of shouted because I have terrible volume control. It was just answering a very simple question at the beginning of the scheduling part (they needed an ID number). And it seemed to have gone downhill from there. I was physically shaking after the call and took about an hour and a half to stop crying and hyperventilating. I don’t think any appointment call has ever gone that terribly before (though most go pretty terribly, to be honest).

So I’m considering writing down everything I want to say before the appointment. I do feel like I need to educate doctors because otherwise all I will be doing is never going to the doctor, or going to the doctor and telling them that everything is fine, and I don’t know why I am even here (I am pretty sure this is the only time I lie a lot because I feel like telling them my problems is an “inconvenience” to the doctor, since you know, they only have 5 minutes to talk to me and are so busy! Even though it’s literally their job to find out what the problems are..).

The Note

I’m a neuroscience grad student, and I’m also autistic, so hopefully the preconceived notions of both of those things will even out the perception of me. (fyi, I’m not stupid). However, I’m not good at summarizing how my body feels in 5 seconds, or answering the common question “why did you come to see me today? Do you have any other questions?”

I have alexithymia – something many autistic people have. It doesn’t mean I can’t understand what I feel, but I am not good at verbalizing my feelings to others in the approximate 5 minutes we have for this entire office visit. This is why I have barely ever told doctors my problems. I’m taking a chance by (for the first time since I was diagnosed, 2 years ago) disclosing this to you in hopes that you trust my judgement, and read what I say seriously.

Just because I can’t verbally summarize all of this information into an easy sound byte or look you directly in the eyes for 2 entire minutes (I do hear everything you’re saying btw, and the humming of whatever machines you’ll have in here), doesn’t mean I don’t know what I’m talking about.

Feel free to ask questions about sections, but please read the entire section even if I answer your open-ended question with “oh yea it’s fine, really.”

The bolded parts are the important parts if you spent the entire visit reading the top of this page (thank you for reading this).

 

End of Note, (put medical things under this).

 

I have a feeling that I’m going to end up not giving this to them, or if I do they will ask me what it is without reading it first, of course. I don’t know if it’ll work, but I’m more hopeful than I used to be. I’m not sure if hope is a good thing in this case, to be honest. This is why I am a learned pessimist. So many things don’t seem to go “as planned,” especially with strangers. I think being a woman makes it seem worse, as again, how could I not know how my voice sounded to other people? I’m a woman! I’m supposed to know! Even if I totally don’t know or can’t control it, the consequences are people already being mad at me for the first thing that comes out of my mouth, no matter what it is. I’m very tired of talking to strangers and being judged for things I can’t control. But wearing an autistic sticker probably wouldn’t work any better. I can just imagine the assumed incompetence I would get. I haven’t tried it but I feel like it’s like playing the lottery. It is very unlikely there would be a positive outcome. There’s no right answer.

“Pay Attention!”

Pat your head and rub your belly while talking to me and tell me if it’s hard to talk.

Play the drums, snare drum, bass drum, and high hat at the same time while talking to me, and tell me if it’s hard to talk.

Read a textbook that is very jargon-y while talking to me and tell me if it’s hard to talk.

Sculpt a bird out of wood while talking to me and tell me if it’s hard to talk.

Serve at the baseline in a tennis match while talking to me and tell me if it’s hard to talk.

Listen to a lecture in a classroom and write down everything that is said while talking to me and tell me if it’s hard to talk.

Balance on your left foot on a beam up high while talking to me and tell me if it’s hard to talk.

Do music theory homework and listen to a piano piece while talking to me and tell me if it’s hard to talk.

Ride a unicycle while talking to me and tell me if it’s hard to talk.

Do calculus homework and listen to music while talking to me and tell me if it’s hard to talk.

Stare into the sun while talking to me and tell me if it’s hard to talk.

Put your hand in an ice bucket for 5 minutes while talking to me and tell me if it’s hard to talk.

Get your skin pitched 100 times while talking to me and tell me if it’s hard to talk.

Get shoved into a small dark closet while talking to me and tell me if it’s hard to talk.

Get your braces tightened while talking to me and tell me if it’s hard to talk.

Have 5 people shout in your ear while talking to me and tell me if it’s hard to talk.

Crash your bike while talking to me and tell me if it’s hard to talk.

Get a tattoo on the boniest part of your body while talking to me and tell me if it’s hard to talk.

And you wonder why making eye contact is so hard for us.

On any given day, and depending on who I am talking to, eye contact may feel like any of those things above. It may feel like mental/physical pain. It may feel like an ambush. It may feel like a jump-scare. It may feel like juggling. It may feel like the least natural thing I have done all day. It may feel awkward, like talking to a dentist when they’re working on your teeth. It may feel like too much exhaustive multi-tasking for very little gain.

And consistently: It definitely doesn’t feel easy.

I’m always paying attention. I hear what you say down the hall, when you mumble. I know who you are by your gait. I notice minute changes in the environment that most others don’t. I am constantly aware of my surroundings, including the people I am talking to.

Don’t mistake eye contact for listening.

 

Alexithymia and Interoception

I never knew I was anxious as a child, or ever really. I thought everyone experienced sweaty palms and a difficult time speaking, or reading things, in front of others. I thought everyone was in pain with loud noises, and we were all supposed to pretend. I would try not blinking whenever I got startled or when my ears hurt (which was often). I’d try to distract myself with books.

I had approximately 4 ways to describe my feelings: content, unpleasant, annoyed, or frustrated.

And annoyed and frustrated were two different intensities of the same feeling.

This is all I ever used. I never said I was in pain – after all, my ears were in pain daily, but that was “normal.” Who’s to say any other physical pain wasn’t normal too? In fact, physical pain was often not as bad as the sensory pain I experienced (especially with hair brushing – that was very painful). I thought I was never supposed to complain, since I knew if I did (at least with loudness), they would not believe it really did hurt me, because I didn’t use the word hurt, or pain. I’d just ask to turn it down, that it was too loud. I was used to things being too loud. I learned I did not have control over it, so I had to learn to live with it. That this was just life. I thought everyone experienced this. Once something is a baseline for so long, you don’t know how anything else feels – how a lack of anxiety would even feel. Of course, I didn’t know I had anxiety. I just knew I had to prepare for things others didn’t, and had to compensate for, you know, being my “weird” self that I was thought to be.

 

Interoception

Since my diagnosis, I’ve found ways to learn what I am feeling. Sometimes I will check my pulse (just touch my neck, sometimes I can feel/hear it without doing this) to see if it is fast. That is how I know I am very anxious.

For me, sensory issues are very much relate to my anxiety. For example, I get anxious every time someone walks next to my office. What if they’re going to talk to me? What if I’m not working hard enough (even though I’m literally working) and they think I’m not doing a good job? What if it’s someone I haven’t seen in a while? What if I have to get up right then and I forget what I was reading?

Getting rid of that input – closing the door, or putting on headphones, really helps me think. I guess it is tied with worrying that I am not doing enough, since I have been a perfectionist growing up and often worried about the validation of others (because that’s how you measure your worth when all you have is your “smarts,” in your mind).

Even simply wearing headphones for half of the day has absurdly reduce my anxiety in general, and I am very lucky that this has helped me this way (not saying others have similar experiences or not).

Strategies for Daily Emotional Regulation:

When I realized that wearing headphones had helped me with anxiety in multiple ways/multiple places, I tried to check in with my sensory environment at least every few hours every day. Setting a reminder might help.

Here are some pragmatic things I check to determine my emotional state (of course not everyone experiences things this way, this is just my experience and what helps me):

Check pulse – am I anxious? Are my palms sweaty? Does my breathing feel weird or kind of like butterflies/tingly?

  •  Pulse is low: Maybe it’s a sensory thing. Feel uncomfortable/annoyed.
    • Motion/Pain/Comfort: Maybe I’m restless. Have I been sitting in a weird position? Do I need to move my angle on my monitor? How do my muscles feel? Am I in mild joint pain without realizing? Do I need to sit up straight/pull my neck back and down? Do I need to do some stretches? Am I getting sleepy? Get up and walk to the window, or do stretches. – Try it. Sometimes helps.
    • Temperature: Do I feel really restless?
      • This sometimes happen when I’m too warm. I should take my jacket off! Do I feel better? (70% of the time I do but I’ve only learned about this recently. I used to think my being restless was a motion issue).
      • Am I distracted from being too cold? Is it unpleasant? I should put my jacket on.
    • Sound: Do I need to move rooms? Is there too much ticking/random noise? Is it too loud, do I need to wear headphones? – Try it.
      • Getting sleepy and annoyed? Try listening to music or a podcast (often helps). Need to move rooms because it didn’t help? Try it. It will likely help.
    • Light: Is my laptop too bright? Is there a weird glare on it? Am I having a hard time focusing my eyes? Do I need to change my background color on my computer, or flux? Do I need to work somewhere else, or look out the window for a few minutes? Am I working under fluorescent light? Do I need to move to a room with natural light? – Try it. Other people may also wear sunglasses for this.
  • Pulse is high: I must be anxious. 
    • Possible reasons: Am I worried about something? Is there a future event coming up? Am I procrastinating doing a task? Yes – drink some water, make sure you’re eating, listen to some music or do a manual task or reading task that is productive. Try focusing on something else.
      • If that doesn’t work, talk to your co-worker about the thing that is worrying you, or go to the sensory list above.

 

Sometimes I get the feeling that something’s just “not right.” I’ve been trying to get better at detecting this feeling. It seems to get easier when you check in with yourself regularly consistently. You could even put a reminder on your phone every hour during the day (if nothing else, just to remind you to blink while looking at a computer screen!).

I used to think that I never felt nauseous. Ever. Turns out, I just didn’t know what nauseous felt like. I don’t think I had it often, but it’s hard to remember an entire 20 years. Some medication I take makes me nauseous but only randomly pops up from time to time and is not consistent. Many times I will say to my husband, “my stomach feels weird, I don’t know why. I’m not sure if I should eat though.” Until recently, I didn’t know that I was experiencing nausea.

This picture that was shared on social media made me realize what it was. I get this strange feeling right under the center of my ribs, especially when I’m breathing. That to me is how I experience nausea. It usually takes me anywhere from 2-5 hours to realize that I am experiencing it, while I am of course still forcing myself to eat (because you know, my stomach just feels weird, I’m not nauseous!). It’s kind of hard to remember the feeling since I only have it maybe 5-6 times a month too.

interoception.jpg

I also have trouble recognizing when I’m tensing my muscles (which of course, likely caused TMJ and some low muscle tone, since I held my shoulders up as a kid all the time without knowing how to relax them – this leads to weirdly large neck muscles to compensate for your very weak shoulder muscles – not recommended!). It’s like your body isn’t giving you enough feedback on what you are actually physically doing. This is probably why I exert a lot of force when it is unnecessary – either I’m not using the correct group of muscles (for things like writing or opening jars) or I’m not getting the feedback that other people do when they tense their muscles the same way. It’s like I don’t have enough finesse in my muscle groups (except for fine motor skills of hands/fingers oddly, I appreciate my kid piano lessons..). Many things that come “naturally” for other people to do physically, do not come naturally to me. I often end up using the wrong muscle group or doing something a different way to compensate for my lack of finesse in other muscle groups. Oh and I also have terrible balance, which shouldn’t be too surprising after that explanation.

 

How My Emotions Physically Feel:

  • Anger/frustration – it’s like there’s an energy I have to get out of my vocal chords. I often want to growl. My throat gets tight from suppressing it, and I tense my jaw muscle a lot (often without realizing it until later). I often tighten/wring my hands to try to get the energy out, and my chest can sometimes feel hot, as well as my head.
  • Sadness – It feels like my head is weighed down, or I’m kind of sinking down when I breathe. I’m not sure if it’s necessarily heavy breathing. I feel like a rag doll. I just let my arms kind of sit there and don’t really tighten many muscles (which is noticeable because I usually do that in baseline life).
  • Restlessness – The obvious one is feeling like I need to move. I also seem to feel energetic, like wanting to do some manual task or something. Similar to being angry in terms of getting energy out of my system, but not with a tight chest or anything, and not wanting to scream. More like needing to be productive or something. I feel kind of itchy, like, none of my positions I’m sitting in are comfortable or pleasant. Nothing feels “right” but I’m not upset by anything and am not intentionally tensing anything. This also may be overlapping with motion/pain/comfort section, so maybe I haven’t worked out restlessness yet.
  • Anxiety – Usually I can hear my heartbeat. Honestly this is the hardest one to describe because I’ve felt it for so long. I’m more noticing what it feels like without it. If it’s social, I’ll have something to say in my head, or repeat a thought over and over to try to get it right. I’ll often put my hands on my neck/shoulder or face. Sometimes I’ll dig my fingernails into my skin to get a distraction to reduce it if it’s really bad and also overlaps with anger or frustration. I might have sweaty palms and try to put pressure on my hands – put them under my knee or sit on them. It’s like I need to put my hands somewhere that they will sink in and be safe, where they are not just roaming around everywhere. Maybe it helps me feel grounded. I’ll feel my throat tighten up and notice saliva in my mouth a lot more. The inside of my head becomes louder (my own mouth movements/talking/breathing/heartbeat becomes louder). I tense my jaw and neck. I get tingling/butterflies when I exhale, slightly lower than where I would get the feeling of nausea.
  • Nausea – Weird feeling of moving pressure right under the center of my ribs, or at the sternum. Feels like it’s near my lungs (but it’s probably my stomach). Doesn’t really cause pain. It kind of pulsates when I breathe which I really dislike.
  • Hunger – I only notice hunger when it gets to the point of pain. It feels more like pain near the gut, so lower than nausea, but I can feel kind of an empty space above where the pain is, like there’s a deflated organ right there (which, there might be, cause I probably haven’t eaten that much..).

 

It’s very hard to describe the physical effects of feelings, but it is so important to think about, especially for people who don’t get that kind of automatic interoceptive feedback that other people have. I think it is a large key to emotional regulation for me as a person because otherwise I wouldn’t be able to describe feelings or understand what I need to do to take care of my body. I still don’t think I necessarily use words the correct way in terms of feelings (I still mostly use those 4 words when I talk about how I really am) but I think looking at the physical has helped me make a good start on working towards being able to explain and communicate my emotions to others.

Autistic Toddlers and Parent Expectations

This is a post for parents (autistic and non-autistic alike):

  • Parents who get told by doctors that their child is autistic in the most devastating way possible.
  • Parents who are told that their child may never learn, may never talk, may never “develop like a normal child” or that their child “may have severe difficulties.”
  • Parents who worry that they are at fault, somehow, in some way. (Parents are not at fault – it is a different neurotype. Autism does not “develop” – you are autistic from birth. You are autistic as a child, and you are autistic as an adult.)

Things to remember:

Doctors can’t predict the future.

You can be autistic and happy. It’s possible. Just because you hear that your 2 or 3-year-old is autistic, doesn’t mean that they can’t live a happy life. Also, remember that your child was still autistic before the diagnosis. They are the same child you have been caring for the last X number of years.

Autism is about 80-90% genetic. This means that you very likely may have an autistic relative – sibling, parent, grandparent – or you may even be autistic yourself. There are of course cases of de novo mutations which were not from either parent as well, but anecdotally, I find this to be less common. Many parents simply don’t know what autism is, and when they look into it for their child, start realizing their brain works in a similar way, or see it in their significant other, especially after finding out how autistic girls and women often present.

Don’t project your worries and fears onto your toddler. If you need to process what having an autistic child means (and what it means for you and your particular autistic child), seek therapy or counseling for yourself sooner than later. Your child doesn’t deserve to have neurotypical expectations and milestones put upon them. You cannot turn your child into a non-autistic child. You cannot “see past their autism.” They are right there. They are not “hiding” – they just may be overstimulated, or have trouble talking, or various other things that aren’t recognized in society as “typical” behavior. But they are not “hiding behind their autism.” That rhetoric (most often promoted by autism charities run by non-autistic people) is very harmful to autistic people. It presumes that our autistic brain is not real, or that we do not have feelings if we do not express them in the “typical” way. I hated hugs as a kid and was expected to hug extended relatives. Some of them try to kiss your cheek (awful sensory experience) or wear strong perform or talk loudly in your ear when you hug them. As I was undiagnosed, I gritted my teeth through those experiences with high anxiety. But I looked (from an NT perspective) “fine” so no one worried. If you don’t play the game of NT communication, you lose out on being able to control your environment and communicate to others (and have them listen to you). It is so important to listen to what your child is saying and to believe them. I was told many times to stop complaining about loud noises. For my entire life. By my entire family. It was painful. But I looked “fine.” 

They assumed my brain worked the same way theirs did. It didn’t. 

Almost all autistic “behaviors” have a reason. It may not seem like a good reason to you, or an appropriate reason, but there is almost always a reason. Many “behaviors” are because of sensory differences and literal thinking or miscommunication from other people to us. It is highly unlikely we are trying to manipulate anyone. We may be in sensory pain. We may be overwhelmed.

I felt so sad for an autistic child in a horrible documentary when he was forced by his mom to move to another place over the summer, even after displaying good behavior at his home and school. He started getting upset, and talking in a stressed out voice, and moving his hands. He was not hurting anyone. His mom felt “unsafe” and called the police so he would “behave.” He was completely still, and “looked fine” when the police got there. He “behaved.” That was not a “dangerous” child. That was an anxious, rightfully upset, stimming autistic child. He did not deserve to have no control over his life, and to be ambushed by both her and a therapist about moving without any warning. They could have approached him in ways which did not cause this. They could have validated his feelings. Instead they refused to see him as an autistic person, and had been more worried about his “autism acting up” than anything else. This is what happens when people talk about seeing “past the autism.” They also see past the child.

The worries you have are not worries for your toddler. Your toddler doesn’t worry about whether they are going to have a relationship, or go to college, or drive. Take it one step at a time. Don’t assume that because someone tells you something about the future of who your child will become (doctor or not), it is going to come true.

Don’t worry about being judged. You will be anyways, no matter what. Don’t prevent your kid from stimming in public (when it may be the most important for them to do so), or from wearing headphones/earplugs/sunglasses/hats, just because you personally cannot deal with the embarrassment of other parents judging you and your child. People are constantly going to tell you how to parent your child (although I’m sure they already do!) and you may have to educate others, or try to ignore them. I’m not saying it’s easy, it’s not. But letting your kid do what they need to do to emotionally regulate should be the number 1 priority, or finding ways for them to channel their stims into something more helpful.


General Info/Tips:

Possible Causes of Sensory Pain and Distress:

  • chaotic visual floor patterns
  • loud noises, high-pitched buzzing most people don’t hear.
  • smells, or texture issues (I’m not a fan of cardboard or paper towels – get unpleasant shivers), can also extend to texture issues with food
  • touch sensitivity – light touches, especially unexpected, may be startling or painful. Some people may like compression vests for deep pressure, or may have large personal space bubble and not like feeling restrained (loose clothing is better for some).
  • Misunderstandings from other people, or being expected to talk, which is very difficult for us.
  • Why talking may be hard for your child, especially for children with selective mutism.

Resources for More Info:

These are books and lectures:

For understanding ASD:

For social skills/understanding Neurotypicals:

  • Making Friends Strategies to improve social understanding and friendship skills (good for parents and younger autistic people)
  • Living Well On the Spectrum (very good for emotional regulation and some social cues – has worksheets in the back) by Dr. Valerie Gaus
  • A Field Guide to Earthlings: An autistic/Asperger view of neurotypical behavior by Ian Ford
  • ^One caveat to the above book – ignore the “sex” chapter – it has very bad advice. All other chapters are good though. More for autistic adults but some of the metaphors at the beginning of the book are very helpful, likely even to younger autistic people.

 

Youtube channels:

These are autistic people explaining their experiences and some basic terms as well, such as how to understand meltdowns, sensory processing issues, or eye contact/body language in autistic people: