Jackie Schuld Art Therapy Blog

Late-Identified Autism Interview: The Ability to Experience Life to the Very Fullest

This is the 22nd interview in my series Interviewing Late-Identified Autistics. Zero is a late-identified autistic. My questions are in bold and Zero’s responses follow in regular typeface.

 

Zero

How old were you when you learned you are autistic?


At age 23 I began researching in order to possibly find reasons why I was the way I was, why I seemed fundamentally different and had major struggles socializing, connecting with people, and feeling safe in the world. At that point in time everything had kind of come to a halt because I was overwhelmed with life, unhappy, unfulfilled and stuck.


But actually, in my late teens, I had come across some information on Asperger’s syndrome and was like, ‘huh, I seem to fit the bill’…maybe not some particular aspects that were described, like narrow and special interests, rigidity, and one-sided conversational style, but I definitely related with the core struggles. I showed my mom and her reaction was essentially something like, “Yeah, uhuh. That’s

interesting. I guess I can see that.” I just got the impression that it wasn’t a big deal, that if it was, doctors and society would know it and be doing something about it, if there was anything you could even do about it. Plus, I didn’t need supports in my life – or so I thought. I went to school and church and I did stuff with friends like a regular kid, was intelligent. I had my struggles, but who doesn’t? I just had a bit more than everyone I knew and was extra sensitive. I could make it in the world if I could find my bearings. So yeah, interesting read, but onto the next thing.


Though when my life came to a halt at 23 and I was looking for answers, I again came upon information on Asperger’s and I was like, ‘oh yeah…’. This time I took it more seriously and read a lot more about it, and the more I read the more it supported my belief that I did have it.


I guess it’s understandable for my mom to have reacted that way. That’s the society we live in. There’s nothing super-obviously majorly different about you, so what’s the big deal? My family had no awareness or knowledge of it – the general era I grew up in was sorely lacking in that. So really, it was a case where we probably wouldn’t have found assistance for it in a lower-support-needs context, especially in our midsize non-destination suburban city with our lower class income.


How did you learn you were autistic?


The reasons I identify with being on the spectrum are tremendous difficulties socializing such as feeling like I speak a different language and occupy a different reality, not picking up on implied meaning or being very good at reading between the lines, not knowing what to say or how to act, not understanding people’s reactions and thought processes; also, being rather literal and logical minded,

difficulty catching onto humor and sarcasm, feeling different or alien (and also having had people point out my differentness all my life), sensory sensitivities, flat affect, auditory processing delay, difficulty with eye contact, sensory processing difficulties, ‘strange’ body posture, movement, and mannerisms, difficulty putting

things into context, my ingrained masking behavior, tendency to not seek out interactions, didn’t see the purpose in a lot of interactions, don’t have a natural sense of interconnectedness with people.


Did you seek out therapy, coaching, or other forms of structured support for autism?


Not really, just one therapist who was supposed to specialize in autism, but that didn’t work out for me, we weren’t syncing. I don’t think there is anything out there that could help me...I’ve gone all my life learning to cope in my own ways so I think that timeframe has passed. I have gone to a couple free meetup groups for autistic people though and that’s interesting to attend every now and again. I was active for some time on a Facebook autism group that was good for receiving feedback on questions and seeing all the topics being talked about.


In what ways have you noticed you’re different from neurotypical people?


It’s been pointed out quite a few times that I have a childish/innocent way or aura about me in my facial expressions and mannerisms.


I can kind of drift off into my own world, zone myself out from the social goings on, maybe wander off a little, or divert my attention to other things in the environment. There are various reasons for that – I’m not as invested in what’s happening around me as neurotypicals are, or it may get, frankly, uninteresting/unnecessary/irrelevant in my view, so diverging from that means doing something that’s more worthwhile or interesting for whatever small amount of time that will be. Also, I certainly don’t have as much ability to effectively immerse myself in typical social interactions as neurotypicals do. It can also have to do with regulating my internal state so that I don’t get overwhelmed and overstimulated.


I have less tolerance for certain things: small talk, “babbly” talk that is not very focused and is very wordy or fast-paced, emotional-based thinking and reacting (not in all instances though, mostly when it confuses things / goes against logic or when it brings unnecessary negative energy to an interaction), driving, loud noises,

crowds, fluorescent lighting, EMFs, inconsistency, plans changing, selfish or manipulative behavior


Family and Relationships


How did friends and family respond when you told them you are autistic?


My parents didn’t have much of a reaction at all, like they had no

opinion of it and didn’t care to talk about it. Their view is like

it’s just something you’ve got to figure out how to deal with and it’s

not a big deal. A lot of people have a kind of blank response like

they’re unsure what to say. Lots of people don’t even know what it

means to be autistic or they just have outdated media depictions of it

in their heads and are caught off guard that a normal-seeming person

is saying they have autism. I’ve also had people try to convince me

that I’m not before even trying to come to a good understanding or act

really skeptical about it.


Is there anyone else in your family who is autistic?


My brother is. We both independently came to the conclusion that we are on the spectrum without knowing that the other was researching it for themself. He’s had difficulty in the socializing, communication and friendship/relationship departments and experienced bullying at school.


How does autism impact your friendships?


It’s always been difficult for me to form connections with people. Of the friendships I have had over the years, many of them were a case where the other person felt more connected with me than I felt with them. Part of that is that I think I haven’t developed enough of an ability to be in sync with people. Another is fear of fully bringing my spirit out around people – it’s really difficult to feel comfortable enough to do that.


How does autism affect your romantic relationships?


I am grayromantic and demiromantic, which doesn’t have anything to do with autism necessarily, but maybe because it takes me longer than most people to feel a connection with someone, that could have something to do with my romantic orientation.


I have never been in a relationship, and you can say autism indirectly has some play in that, simply because if I didn’t have autism I probably would have met, gotten to know, and connected with a lot more people over my lifetime. But it fundamentally has to do with my stance that I don’t actively look for that or date, that I don’t at all take it lightly, have to be solid friends with someone before entertaining that prospect, and of course not everyone I become friends with willfit the bill.


Working with Your Autistic Brain


What are some positives associated with being autistic and in what ways does it enhance your life?


Having a very profound experience of life has been a wonderful thing. I feel like I had the ability to experience life to the very fullest in my outer and inner experience. Although, I have frequently felt like I’m on some different kind of level than those around me.


I have inspired people to be more true to themselves since I’m a pretty independent do-my-own-thing quirky authentic individual, and to be more open, as I am a pretty open book and raw in a way, tended to come from a place of personal meaning and was really grounded in the present moment, as opposed to following social scripts and patterns and being on autopilot. I’m happy that I could be that for others and that this was so natural for me.


I’m good at seeing things in a novel and creative manner.


I can be really thorough and exacting in projects I undertake and try to communicate things in the best and most effective manner when I have the energy to.


I have tended to be very accepting of others and to not make assumptions.


What helps you prevent or cope with moments of overwhelm?


I think I kind of learned to check-out a little for self-regulation. It may seem like I’m in my own world or day-dreaming.


It’s good to keep interaction to a minimum at times of overwhelm, go off by myself if possible, mask less, because that is hard work.


I can also at times refresh or recalibrate if I’m in an anxious/overwhelmed state by trying to see it from a different perspective, maybe a more neurotypical one, to help me see the situation as less threatening and difficult and to feel like I have

the strength and ability to get through it. I’m not negating my own experience but kind of buffering it when it gets out of hand as far as disabling my ability to function in the world...when you get to an overwhelmed state your brain won’t necessarily be thinking very logically and is really focused on and maybe blowing out of proportion things that are distressing to you.


It can be helpful to interact with a safe person too, maybe get some reassurance. Sometimes I think I just need to feel less disconnected and discombobulated from feeling out of sync with the outer world, or need a boost of confidence, sense of agency.


Zero

What are some of the challenges you face in being autistic?


Having trouble connecting with people and people having trouble connecting with me. It’s difficult finding kindred spirits.


All the things that don’t come naturally or intuitively to me that everyone else around me doesn’t seem to have a problem with. Not having ‘common sense’ at times.


Being ‘othered’ and not accepted because I’m not similar enough to others. People tend to like to associate with what’s familiar to them.


Overwhelm, significant difficulty following others and understanding them. Sometimes being slow to understand social situations.


Self-consciousness, social anxiety.


What is your experience with medical systems?


Going to the doctor can literally be traumatizing for me, and it should be the opposite. Autism aside, our medical system is so impersonal and uncaring. Once when a nurse was attending me after my doctor session I broke down crying because I felt like he wasn’t listening to me and wasn’t letting me talk much, and I was having really concerning symptoms. Doctor sessions are super rushed and a

good amount of doctors I’ve interacted with are not friendly and kind of condescending. The type of interaction in doctor’s offices is overwhelming because you have to think really fast and be rather assertive. I’ve learned to write down what I want to talk about and review it well before the actual appointment. I get panicky before appointments because I know I’m going to be walking into a situation where I may well not get taken very seriously, have to fight to be heard, and that I’m some nuisance they’ve got to process.


I had a new doctor in my last appointment and she acted annoyed and defensive with me over things that didn’t call for that. I was so overwhelmed and stressed afterward I had to sit in the car for 45 minutes before driving back and couldn’t respond to any texts that day, kind of going mute in a sense, which is unusual for me, and cried a lot at home.


I’ve tried talk therapy many times but it just does not work for me. They jump to the wrong conclusions and can’t seem to really get where I’m coming from and I just get aggravated by their communication styles and approach…it must be a clash between their neurotypical brain and my neurodivergent brain. I’ve never felt safe enough to be vulnerable in that setting. I’m not sure I’m really geared to processing things through talking with others anyways. I have this thing about me where when I talk about something, I’m kind of removed from the emotions associated with it or I can’t seem to integrate it into the interpersonal setting.


How does being autistic impact your work?


If I’m on a team it can be tough because group dynamics are more difficult to manage than if I’m working on my own or with just one person. I’ll probably get confused and miss important things.


As I’ve seen many other auties say, if instructions are given in a conversational manner I may not get everything because the main points may not be clear and there may be things implied which the communicator thinks are obvious but which don’t get through to me. I have a tendency to go along and pretend I understand, and my brain may slowly stitch it together in a delayed processing type of thing or I

might pick it up by context of what happens next. I do that because people have shamed me or gotten upset over my not getting things, and I don’t want people to see me as stupid or inattentive, which they will.


I choose positions where I don’t have to interact with a lot of people because of how stressful that is.


I’ve worked places where they expect the employees to just pick up on certain things along the way but that is not a good setup for me because I miss social cues and am not very natural at interacting with coworkers in all the little ways throughout the day that neurotypicals are used to, and that’s what helps them learn and integrate more information to better navigate the workplace.


I’m not good at attending to a lot of things at once. I’m better at focusing on one or two things, and also sticking to a routine and not being expected to notice and take action on new and different things from day to day, unless I’ve been walked through that particular thing, practiced doing it, have been versed on its importance and on what exactly to do about it.


If it’s a fast-paced or chaotic environment I won’t absorb things very well. So even though I may be following certain protocols one day, it can be kind of a blur to me; and if some time goes by where I haven’t had to utilize those steps and another day comes around where I suddenly have to go through that process again I may totally blank on certain things. I feel like I need time to stop and reflect and get proper bearings which would be looked down on in many situations because of the move, move, move mentality.


Zero

The Past


How did being an undiagnosed autistic impact your childhood?


I was inordinately shy and scared around people. I guess people just figured I’d grow out of it like a typical person, but of course it was much more than simple shyness. I had a really really tough time being around people and being in new situations. It could be so nerve-wracking and overwhelming for me that it definitely contributed to me being drawn in to my self, being in my own world, because it was so hard to be a part of the neurotypical world.


In a lot of cases I think it can be really hard for neurodiverse folks to forge a way to good social integration and a healthy level of comfortability and sense of agency without help. I didn’t feel like I had a handle on socializing until I was in college. It was like I finally had tapped into some human potential that everyone else had been tapped into since they were kids. I couldn’t even feel totally comfortable or truly get close with friends because I didn’t know how to get all of me into the mix of things. It didn’t flow smoothly. And the deeper parts of me were really shut off from the world, I guess from mild trauma of being subtly rejected for being different, being an extra sensitive person, and having so much difficulty navigating

all the subtleties and complexities of human life.


Maybe if I had known of my autism growing up I wouldn’t have felt pressure to live up to neurotypical standards of being and go through all the stress associated with that.


How has your identification as autistic changed how you view your childhood or early adulthood?


I had really low self-esteem when I was a kid and young teen. I think that must have been due to being subtly rejected for who I was over and over. I just felt like people couldn’t like me. But in reality I had legitimate struggles with social cues and social norms. I really didn’t do anything that terrible, but it gets to you when people are

not accepting or wary of you enough times. I was really sensitive to people’s judgments and opinions and people are very quick to judge and ‘other’. Plus, had I been able to be myself instead of the timid mouse I had become in reaction to life, I think people would have liked me. But I was just too scared, vulnerable and overwhelmed.


In my early adulthood, even though I had grown in social skills and amount of friends, I was still very much in my own world…I didn’t realize how much…and I was contending with an enormous existential burden which spanned difficulties I had in being my full self, feeling safe around people, and forming meaningful connections. I flatlined in my adulthood as far as my life going anywhere. I got really depressed and felt like I wouldn’t ever be able to make it but I wish I had been able to see and accept that my timeline was just different from typical people and there was still opportunity and hope. I did not need to expect myself to live a neurotypical lifestyle or be adjusted to life in the way that others were…that’s part of what made life so difficult. But in any case I definitely was quite maladjusted and

needed help and didn’t know where to find it. I had some very serious core problems and I actually did a really great job at living and trying to work with them as I progressed into adulthood…I almost made it out alright.


What ways did you camouflage or mask?


It varies when and with what I feel comfortable not masking. Thankfully I never got in the habit of totally covering myself, because authenticity and individuality have always been values of mine. I learned to put on many different little components to conform to others’ communication styles, expectations and preferences. I can put on a very convincing show of neurotypicality at times. I’ll at times make myself appear more interested and comfortable in interacting, force facial expressions, vocal inflection, show of emotion, sustained eye contact, give certain expected reactions, not allow my face to make some of it's natural expressions or my body to

make some of it’s natural movements, pretend to understand things, force myself through difficult/uncomfortable situations because others don’t have problems with it.


My masking behavior also branched off into the hiding and suppressing of my spirit from feeling so unsafe and vulnerable and not wanting too much attention, so I’ll mask things that wouldn’t be seen as weird but I just don’t feel comfortable bringing out, like fully genuine smiles and letting my eyes be expressive and my body be more fluid. It’s a complex, for sure. My masking these days is in a complicated state because I also mask chronic fatigue and dissociation and my sense of self has broken down so it’s even more difficult to “be myself."


Connecting with You


If someone would like to connect with you, how can they reach you?


thewindthatmanifests@gmail.com


Do you have any works, websites, or other creative ventures you would like to share with others?


Mistralspace.medium.com


 

Thank you for reading. It’s my goal to reach 100 interviews. If you are a late-identified autistic, I would love for you to participate in this series. Please email me at jackieschuldart@gmail.com if you are interested.

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