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This is the 23rd interview in my series Interviewing Late-Identified Autistics. John is a late-identified autistic. My questions are in bold and John's responses follow in regular typeface.
What name and pronouns do you use?
John N, he/him, AFAB
How old were you when you learned you were autistic?
I was 31 years old. I had been seeking a diagnosis since I was 20.
How did you learn you are autistic?
Ironically, the kerfuffle about vaccines causing Autism that took hold in the aughts was the catalyst for me. I kept hearing about it and hearing about it and was wondering how Autism could ever be so much worse than polio that you wouldn’t vaccinate your kid. However, reading up on Autism made me start to wonder about myself since much of the criteria basically described my childhood. I asked my therapist at the time and he said I wasn’t because I could talk about more than one subject so I let it go. However, I kept hearing about research that sounded even more like me so a few years later I asked my new therapist and she said no cause I had a sense of humor so I let it go.
A few years later, I’m still in therapy and my autistic traits only seemed to be getting louder and more pronounced so I asked my newest therapist and he said no because I felt empathy. I said, “How can you diagnose me without asking me any questions, without consulting any expert, without running any tests?” He worked with moderately verbal autistic teen boys in a group home setting for a summer when he was finishing his accreditation. That was his reason. I am not a teen, a boy, in a group home or functionally mute. I’m an adult, female presenting, living with my parents, who finds every day living exhausting.
I wasn’t satisfied with his analysis and he recommended I see the Regional Chief of Psychiatry in my medical system. With a title like that, I expected definitive tests would finally reveal the answer. We talked for 10 minutes before he also said no and brought up the same reasons as the others. I said I’d like to be tested anyway. It would give me peace of mind and I could let it go. Truth is, they couldn’t do the test because there is very little research done for Autistic adults and even fewer people who can make a diagnosis for adults who aren’t functionally mute or present with tics or clear cognitive stereotypes. Much of the research has been done on little boys who get very aggressive. If I wanted a real diagnosis, I was on my own and out of pocket. By pure luck, I found a world expert living not far from me and he was able to administer the test and give me real answers. I was Autistic and I needed therapies meant for Autistic individuals. It was a great relief. I took it back to the regional chief and he still wasn’t convinced. ¯\_(ツ)_/¯
How do any of your identities (ex. gender, race, religion, sexuality, etc.) impact your late identification as autistic?
Presenting female and being LGBTQ, I was used to being paid very little mind. I learned how to “blend into the walls” as it were so no one would notice if I was having trouble. My parents could always tell but my teachers just thought I was shy and unusually bright so they never understood why school was so difficult for me.
How did your friends and family respond when you told them you are autistic?
Quite the opposite to what I expected. I hadn’t really told anyone for most of my twenties that I had this nagging question. I told my parents only a few years before I was diagnosed so they weren’t all that surprised. I think my father was a bit more surprised than my mother. He was more, “I just thought you did that because that was who you were, not because you didn’t understand what was going on around you.” He still sees me like that. I very much like that, to him, there’s no difference between me and Autistic me. It’s still me. Everyone else had this response though, “OOOOH! That makes soooo much sense!” And they’d share a story where I did something they didn’t understand and how having Autism made my response so much more understandable.
Did you seek out therapy, coaching, or other forms of structured support for autism?
I did and continue to do so. I have talked with several therapists who specifically focus on Autism; one who deals with adults right after they’ve been diagnosed to help them understand not just what Autism is but how the patient Autistically presents and one who deals almost exclusively with Autistic clients and helps them with day to day challenges. I’ve done Exposure Response Prevention therapy to help with anxiety and am currently working towards doing Occupational Therapy to help me with basic skills that really overstimulate me like brushing teeth and washing my own laundry. I also hope to do Executive Functioning Coaching to help me work out time management, routines, organization and some practical work skills. Basically, I’m using my 30s to learn skills I should have learned in my 10s because no one was told how to teach me.
How has learning you are autistic impacted your life?
I’m 1000x happier. Even when it seems like I’m not advancing as much as I’d like in my skills or my emotional control, I know why it’s harder for me. That makes it so much easier to push through and keep trying and I’m prepared that new skills are just going to take me longer and that’s okay.
Your Current Life
How have you modified or adapted your life since learning you’re autistic?
I find I advocate for myself more now. I don’t mask as much as I used to. I ask for what I need without feeling guilty or intrusive.
In what ways does being autistic enhance your life?
I’m a smart, funny, talkative little bug. My parents call me their ‘why’ child because I have never stopped wanting to know how things work, where people come from, why things are the way they are. My father had the driest humor (like a square of hardtack) and you wouldn’t even realize he was telling a joke until the punchline. I learned very early on to be stealth funny. My mom was always making up songs about whatever she was doing and tell stories about children who cleaned up and helped around the house like Aesop. I love telling intricate, detailed, engrossing stories now and will tell them to pretty much anyone who will listen even if it’s the 12th time I’ve told them.
What are some of the challenges you face in being autistic?
Sadly, I feel much of my adult life was spent waiting for a diagnosis when it should have been apparent that something more complex than general anxiety and depression was going on. I have been homebound for the last 11 years. I don’t have basic living skills and was only able to live independently for 1 year of my entire adult life. I’m terrified of nearly everything and need help with most of my chores (i.e. cooking, cleaning, shopping, driving). Because of my constant isolation I have very few friends, though with new therapy, I have recently made friends with other Autistic people. I’ve never had a romantic relationship, I don’t have a social life, I live with my parents because I need them and that’s just not where anyone in their mid-30s wants to be.
In what ways have you noticed you’re different from neurotypical people (behavior, preferences, communication styles, etc.)?
Figurative language can get a bit tricky for me. Idioms don’t usually make a lot of sense cause my first instinct is to think of the words in their literal context. For instance, walking a mile in someone else’s shoes. Why would I put on your shoes and take a hike? I’ll wear my own shoes, thank you very much.
NTs also think in concepts, compartmentalizing or “thinking inside the box.” I never learned about the boxes so I have a ball pit of ideas, some are green, some are blue, but I’m going to keep chucking them at you and often I’ll find a solution a NT would never have considered because that idea didn’t live in that box before now. The ball pit has also worked the opposite way for emotions. I’m really good in an emergency, apparently a little too good. If someone I loved fell down the stairs, broke their leg and the bone is sticking out, I have no problem coordinating care, keeping the person calm and getting them medical attention while everyone else is freaking out. I could probably even reset their leg. NTs ask me how I do that. Because I’m only dealing with the yellow balls in my ball pit. When I run out of yellow balls, I don’t know what to do and usually end up having a full anxiety attack when they come home and need help into bed. I’m dealing with the green balls now and can’t do a damn thing.
I also have what are societally age-inappropriate reactions (meltdowns) when my expectations are not met. Y’all can go with the flow if enough of your expectations are met. I’m quite jealous of that. When I eat a taco, it must have meat, beans, cheese, sour cream, lettuce and tomato. Meat, beans, sour cream, lettuce and tomato is not a taco and now I’m upset because I was all excited to eat a taco and what has been handed to me did not meet that criteria. I may actually starve to death from disappointment one day.
Do you experience any other mental or physical differences (including disabilities, other neurodiversities, etc.) that impact you? How have these influenced your autistic journey?
I have OCD, ADHD, PTSD, insomnia, fibromyalgia, hypothyroidism, poly-cystic ovarian syndrome and mitral regurgitation with an atrial septal defect. Heart problems for the layman and ASD2 just to screw with the medical community (Autism Spectrum Disorder, Atrial Septal Defect).I also have alexithymia which means I cannot recognize feelings in myself or others. I still have the feelings but I have almost no neural connections that lead to the ball pit of words for how I felt. Imagine having food poisoning but only being able to relay that you feel wrong. Until you vomit all over them, nobody really gets what you’re trying to tell them and so getting a diagnosis for anything is really hard. I have to push for doctors to believe me that something’s not right and they need to look beyond the words I tell them. Therapy is a real doozy sometimes cause those kinds of feelings are even more abstract and all I know are the words happy, sad and mad and I’m not sure I know what happy feels like but I’m very familiar with sad and mad.
If you work, what do you do for work? How does your autistic identity impact your work?
I’m a writer by trade but I have not worked in a professional capacity my entire adult life. I can tell marvelous stories without needing a great deal of prep work. You remember how your math teacher always asked you to show your work? It’s just those damn boxes again but in my ball pit I can come up with stories so different than what you’ll find from many classical authors. I have a theory most science fiction and fantasy writers are probably Autistic because their real world is not bound by boxes so hobbits with enchanted rings and aliens with a wild west culture, why not?
Is there anyone else in your family who is neurodiverse, autistic, or otherwise?
Technically, only my cousin’s son has been officially diagnosed. I suspect several of my relatives, both alive and dead, may occupy the spectrum.
What helps you prevent or cope with moments of overwhelm?
Soft toys, breathing techniques. There’s a sensory thing I learned that helps a lot where you take your fives senses and list things in a counting down fashion: five things you like to smell, four things you like to touch, three things you like to hear, etc. It doesn’t matter which sense is which number. But when it comes to leaving my house I still have to use medication. I don’t like that.
What support do you wish was easier to access?
A lot of my time is spent learning how to deal with everyday things. It’s very frustrating to feel like a four year-old trapped in a 35 year-old’s body. People treat you like an adult when you need to be treated like a child and, at times, they treat you like a child when you just want to be an adult. So much of Autistic therapy is designed for children that adult therapies just get overlooked. You either learned those skills as a child or you need a carer as an adult. No one tells you where to find resources as an adult and I’m fairly certain it’s either because they don’t know what resources exist anymore than the next person or there simply aren’t any for adults. I wish adult therapies for Autism were also a larger priority to insurers. Executive functioning coaching is not covered. It depends on your psychiatrist if they cover Exposure Response Prevention. Occupational Therapy can sometimes be limited to certain providers and certain conditions. I need in home therapy and that is almost universally not covered because my condition is not “severe” enough. I can’t hold a job or walk outside. Sans being bedridden, how much more severe do you think it should be before I get adequate care?
How have you self-advocated for your needs?
To put it bluntly, I stopped giving a flying [expletive deleted] how others saw me if I made “silly” requests. I was actually quite amazed what doors open when you just tell someone, “I’m Autistic. Please don’t ask me to shake hands. I don’t like it.” Many kind people have followed that up with, “Oh…is there anything else I should avoid doing to make you more comfortable?” Immediately, a social box is broken down and I’m allowed to play in the ball pit again.
After a while you can sort of tell who’s a safe ask and when you should keep your eyes on the floor. I was accidentally so unmasked at my dentist office, I asked if I could take off my shoes. I absolutely despise anything touching my feet. They said, “Sure, we’ll put them over here so they’re out of the way!” Talk about a ‘wow’ moment. Now, I just take my shoes off when I get called back and they move them out of the way for me.
How does your autistic identity impact your friendships?
I haven’t met any non-autistic people since learning about my diagnosis but I would highly recommend finding some Autistic friends. It’s very comforting to talk to people who think like me, talk like me, act like me. It’s not even awkward when there are six of us on zoom and no ones talking. It’s very pleasant.
How does your autistic identity impact your romantic relationships?
I have not had the ability to make a romantic attachment with someone. I very much dread the idea of dating and wish it was more like an interview/arranged marriage type process. I do wish to have a permanent companion but I do not enjoy the experience of creating that emotional attachment without a permanent goal attached to it.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
They suck while simultaneously being way better than they used to be. There needs to be a better balance between 8-12 years of medical education and being the only person who occupies this body so I need you to believe me. I think we’re a lot better with mental health than we used to be, no longer chaining people to their bedposts and locking them in padded rooms but we have a long way to go like making quiet rooms with dim lights as essential in every building as bathrooms. I don’t think that would just be useful for Autistic people but people with anxiety or people just having a $h!t day. There are some great new advocates coming up in the world proposing we stop treating everyone with a disability like they need to be cured; that the person is not disabled, it’s the environment we’ve forced them to work within that’s causing all the problems. By making environments more accessible for those on the spectrum, we make them more accessible to everyone.
Your Past
How did being an undiagnosed autistic child impact your childhood?
I got bullied so I became a bully. I didn’t like either. I had a lot of “behavioral problems” in elementary school until I learned the “rules.” Then once I learned the rules, I manipulated them until they cracked. What’s the latest I can show up for class and not get a tardy slip? How many days past a due date can I turn something in and still get partial credit? Most days, I learned on my own and ignored the teacher completely. I was actually chastised for being too far ahead of the class and needed to slow down. I didn’t listen. I usually had one best friend, 2-4 close friends and everyone else was an acquaintance. I became engrossed in my theater department in high school. I would hide out in the auditorium sometimes when I wanted quiet during the school day.
It got brutal when I got sick around 15/16. Like I said, I don’t recognize feeling words and I really couldn’t tell people what was wrong so for three years I spent every 7-10 days at the doctor’s office because I wasn’t getting better. I missed weeks of school at a time. Most of my teachers were angry with me that I didn’t do the homework they’d sent home. I didn’t care, I was too worried I was going to die. Eventually I stopped talking to anyone. I slept when others were awake and I was awake when others slept. Some of it was part of being sick but some of it was just to avoid facing the school. Administrators brought me in for meetings when I did show up, told me I was lazy, I’d never amount to anything. I didn’t argue with them.
They told my parents I was faking it to get out of school. My mom gave them a box full of doctors notes, test results, work-ups and exam schedules. They didn’t care. They just wanted my butt in the seat. So they called a meeting with all my teachers, all the administrators, my parents and myself. They each took a turn to tell me what problems I caused, that I was insubordinate and a drain on their resources. My parents asked what the point of all this was and they slid drop out papers across the table and said they weren’t interested in helping me since I wasn’t even willing to defend myself (selective mutism was already engaged, I couldn’t say anything even if I’d wanted to), they lose funding the longer I stay on the rolls and they’d had enough. I thought my dad was going to throw punches but my mom stood up, ended the meeting and took me home. I’ve never regretted signing those papers but I wonder if they would have tried any harder if they knew I had Autism. I also wonder if my parents wouldn’t have pulled me sooner if they had known I had Autism.
Either way, I was one of the first children left behind by “No Child Left Behind” policies. I got my GED when I was 19 and passed in the top 2%. I’m very proud of my GED cause I actually earned it.
What ways did you camouflage or mask?
Don’t draw attention to yourself, look people in the eye so they won’t keep looking at you, hide at the back of the room, don’t say more words than you have to, when someone asks how you are find a way not to answer cause they don’t actually care and NEVER tell anyone anything personal or ask for help.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
I’m not a regretful person but I do wonder sometimes if school would have been any better if they had known. There was a boy in my class, looking back, I’m almost sure was Autistic but even more so than me. He was labeled a discipline problem. I think about him and figure if they couldn’t see Autism when he was stressed out and banging his head with his school books, they were never going to see it in me and feel a bit grateful that they didn’t know. I wish my parents had known because I think they would have made different choices for me when it came to friends, chores, school so that I wouldn’t have so much trouble as an adult. They are not regretful people either but no parent looks at their kid when they’re born and says, “Gosh, I hope life is so hard for you that you have to live with us forever.”
But at least, now I know why things were so damn hard. It wasn’t me. It wasn’t them. It was a lack of knowledge with all involved.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
The world is just a pane of glass for you, simple, clean, clear. I thought I saw the world through broken glass, distorted, discolored, and confused. The shattered pieces never gave me the whole picture no matter how close I examined them to see what I did wrong. They made no discernible shapes, we couldn’t even agree on the color sometimes. People said, “why can’t you see, it looks like this!” But it didn’t, not to me. It made me very sad. I wanted to see what you see. When I was told I had Autism, I was able to step back and when I did, oh Lord what I saw. The shapes, the colors, the movement of the world. I had been looking at the world, not through broken glass but a stained glass window. I saw the world in a way no one else could see; it was special, it was mine. Everything made more sense through the stained glass pieces. It was more rich, more vibrant than anything I had ever seen before and it was mine to share or mine to keep secret. You see the world as a pane of glass, I see the world as the rose window of the universe’s finest cathedral.
What do you wish others knew about autism?
Autism is beautiful and joyous. It’s not the end of the world, just the beginning in fact. We make your lives more interesting. We’ll show you something you’ve seen 1,000 times before and you’ll be able to experience it in a whole new way. We are smart, we’re funny, we will know answers to questions you never asked, we will push you to be better people, more patient, more empathetic, more present. We are not disabled, we’re functionally unique. And no matter where on the spectrum we are, we are WAY better than polio!
What is your advice for someone who thinks they might be autistic?
My first advice is to parents. If you think your kid is Autistic, test them. Test them now. Insurers and providers will bend over backwards, leap through fiery hoops, jump over tall buildings to make sure your child has a roof over their head, food in their bellies, a top-notch education and Autism based therapy that will help them succeed as an adult. You have until they are 17 years, 11 months, 29 days, 23 hours and 59 minutes old. Then that Damocles comes crashing down. You can’t get that level of care back ever, ever again.
If you’re an adult, don’t give up. If you want to get tested, don’t give up. If you feel comfortable self-diagnosing, do it. But if you need specific therapies, you’ll need to find someone to give you the test. They are expensive but they’re worth it in the long run. Having that diagnosis opened a lot of doors my insurer just didn’t want to open any other way. You have a right to know, yes or no.
Something my therapist told me that I’ve found invaluable going forward when I have medical concerns and I don’t have the words to say anything else to my provider, “If I am worried about it, you need to be worried about it.” I’m the one who has to deal with the consequences, I pay them to rule out those consequences. If they don’t listen or they don’t want to look in to it, I need to find someone else.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
Hannah Gadsby’s comedy special Douglas. She is Autistic, she makes a living being funny and she’s a late diagnosee like the rest of us!
I also love my set of mixed emotions cards. They literally go with me everywhere. It’s a deck of cards that just have emotions on them and you pick from the deck how you’re feeling so other people can understand you. I have a lot more emotions than happy, sad and mad it turns out! They also come with helper cards like if you need to make a choice between (a), (b) and (c), you pick the cards of how you think you would feel if you chose (a), how you would feel if you chose (b), so on and it makes feelings clearer so you can make better choices for yourself.
https://www.mixed-emotions.com/
Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?
Dr. Tony Attwood has several lectures available for free on YouTube. He is the world’s leading expert on Autism and Autism in girls. To help you understand just how far research has come in the last 50 years, he often talks about researching Autism but never noticing the symptoms in his own son until his son was an adult. Even a world expert couldn’t see it in his own child, so it’s not just you. ‘Could it be Autism?’, ‘Could it be Asperger’s?’, ‘Is Asperger’s the Next Stage in Human Evolution?’, and ‘Asperger’s in Girls’ were the ones I enjoyed most.
Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?
I identify most with Sheldon Cooper from the Big Bang Theory/Young Sheldon. There are a few interviews where the original actor Jim Parsons had a few discussions with the show’s creator Chuck Lorre about whether they should ever officially declare Sheldon as Autistic but they decided not to. So many individuals with Autism related to him without the diagnosis and so many people never pursue a diagnosis themselves, I felt it was just as appropriate for him to be undiagnosed. Jim and Iain Armitage who plays Young Sheldon do a really great job, the writer’s keep the frustrating as well as the likable aspects of Autism, and the way the other actors respond to his “quirkiness” is not unlike how most people react. You get used to it after awhile and eventually a lot of it doesn’t phase them anymore.
Are there any fictional autitistic characters that miss the mark on depicting autism? Can you give one example and explain why?
I would actually say there’s under-representation more than there is misrepresentation. I know that’s not a commonly held belief because many other Autistic individuals have a real problem with the way Autism is portrayed in media since it generally gravitates to the most intense forms of Autism. Dustin Hoffman in Rain Man was not an inaccurate portrayal of someone with Autism, in my opinion, it was just an extreme portrayal. I would prefer the news stop talking about us without actually interviewing someone with Autism first. That’s where I usually get prickly.
Is there anything else you would like to add?
I’d like to add two comments.
1) I have been diagnosed with high functioning Autism, which is a terrible name and I fully advocate that we just say Autistic Spectrum Disorder because there is a cost to saying I am high functioning to NTs. I need a caretaker 24/7. Luckily for me, my parents have taken on that support well into my adulthood. I even get discussed as part of their future retirement budget because, at this time, we just don’t have any clear signs that I will eventually no longer need their care.
It is terrifying to be an adult who is dependent. It is emotionally and physically tasking to ask for help with almost every part of your day whether it’s making sure my clothes get washed, I get dinner on time or brushing my freaking teeth at night. I have notes all over my house so I don’t forget things and I still forget things. I don’t feel like I function highly because I seem to leave no evidence to suggest it.
Then I start talking to someone about the finer details of quantum mechanics, the minutia of historical events or elaborate stories of a race of people living in a time and space that only exist in my head and suddenly I’m a savant. I function on a level most people can’t even dream and I don’t know why.
If you’re a NT, it is not appropriate to ask if we’re high, mid or low functioning because it presents a stereotype to you that will be inaccurate no matter who is standing in front of you. Some of us with high functioning Autism need permanent caretakers too and many with low functioning Autism understand way more about what’s happening around them than they are given credit for. We are all different. That’s why it’s a spectrum.
Please read this article to better understand.
Please also give more support to ND caretakers. Most are family members who do it because if they don’t, no one else will. They need support groups, dedicated therapists, dedicated resources too. Caretakers are my heroes. They do thankless work for no pay just to keep us going. If you have such a caretaker, give them a hug and a kiss and say thank you. If you are a caretaker, tell the Department of Social Services you exist and you deserve the same resources and care as professional caretakers.
2) Before I learned I was Autistic, I was told I had severe anxiety disorder. After about four years of almost complete isolation and leaving my house only for doctors appointments and cancelling a minimum of 50% of the time, my psychiatrist suggested I get a service dog, even if it was just to help around the house. My service dog gave me a new lease on life. She learned adaptions I could never teach her like comforting me during my night terrors (I almost never have them now) and she is a sensory board when I’m out. I stroke the very tips of her ears for their softness, I stroke her back for it’s coarse texture, I take deep breaths in her fur and she licks my face to make me smile. I have someone to talk to while I wait even though it’s mostly just to tell her she’s a good girl. She protects me from people who approach too quickly and she’s a conversation starter for those who are more gentle. She starts conversations so I don’t have to and I know I have an in to ask for help if that’s what I need.
She can’t make me dinner or wash my clothes but she gives me a sense of security I wouldn’t have any other way. She’s as integral to my healthcare as my medication or therapy. She’s helped me make it to doctors appointments regularly and on time. She’s given me the confidence to ask for help from the people around me. And she’s a great gal to cuddle with! I still struggle with the anxiety but she gives me a focal point, an anchor, something to depend on that is constant and reassuring no matter where I go. If anxiety is a daily part of your Autistic routine, ask about a service dog. It may just change your life.
Connecting with You
If someone would like to connect with you, how can they reach you?
39Hitch@gmail.com
Do you have any works, websites, or other creative ventures you would like to share with others?
I had a blog about my Autistic experiences before I received a diagnosis. I don’t post anymore because I have my diagnosis now but it’s a chronicle of life with Autism before I knew it.
http://anonymousphobia.blogspot.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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