‘Why are you seeking a diagnosis?’ They didn’t believe me. I was an imposter living a neurotypical, picture-perfect life.’: Woman diagnoses herself with autism after decades of ‘masking’

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“I am a self-diagnosed autistic woman. I have a very strong sense of honesty, so writing this has been a journey for me. How can I diagnose myself? I am not a doctor. But as I sought out more to understand what I was going through, I found more and more women speaking about their self diagnosis. It was through others’ stories and my doctor’s help I was finally able to identify and get a diagnosis for CPTSD. I am now pursuing an official autism diagnosis.

Often, people ask me why I am seeking an official diagnosis for autism. I used to be taken aback by that comment, as if they didn’t believe me. But I now know there is no way anyone else could possibly know there was something wrong, through my ‘neurotypical’ mask. I was suffering, masked with a learned smile and forced direct eye contact. I understand all of the pain I suffer through on a daily basis is because I was never taught the proper coping mechanisms and we don’t live in an atypical friendly world. Hopefully, through my story, people will understand the importance of recognizing and helping autistics be more understood and accepted.

I grew up in what I would call a typical family. Although if I told you many of my stories, you would think it wasn’t typical at all. The old mentality of ‘boys will be boys’ should never have been, but I had bruises to prove it. Don’t worry too much – I also had muscles and an insane ability to squirm out of almost every move they put me in. I had older generation parents that had grown up with the ‘suck it up’ mentality, their parents having been through immigration and wars, so that is what I was taught as well. Well, at least this is what I convinced myself.

Courtesy of Autie Erin

I did my best to suck it up and fit in. It was like the survival of the fittest once my sister was no longer in the house. She moved out into foster care when I was around 4. My brothers were brutal to each other and eventually it spread to me. So, I learned a way of coping with the life I was given. When I was out during the day, I was being who people needed me to be, then I would come home and put my dukes up. It was my way of life and I dealt with it.

I actually think being able to have a physical way to get out all the under-stimulation/overstimulation of life on a daily basis was helpful in my childhood. But not in such a way that it hasn’t left permanent emotional and psychological trauma. As I write these recollections, having 2 children of my own, I don’t understand how I had always thought this was just a normal way of living. One thing I try to do is keep our home safe for the kids. But I do also think it’s important for them to learn to protect themselves. I’m always straddling the lines. I tend to do that, never quite having a thought for protecting myself.

I wasn’t completely unsafe; I had my mother. She was small in stature, but big in heart. She made me feel completely and unconditionally loved. If she was around, I was safe. Everyone was always on their best behavior around mom. Not because she demanded it, but because she deserved it. She filled each of our needs in the best ways she knew how. She trusted me to a fault. She filled my cup.

When I grew old enough to move out, I hightailed it out of the house that felt unsafe for me. At 18, I headed to New Hampshire and slept at my sister’s house for a month. No rules, no expectations – only safety. I emerged a stronger Erin. One that was ready to take on the world. So, with my sister’s love and acceptance secured, I got myself a job. And then a better one. I got my own place, my own car – the world was my oyster. I met great friends, rebelled a bit, but felt safe. Eventually meeting my now-husband. One thing remained constant – I kept in contact with my mom.

Courtesy of Autie Erin

Fast forward many years later, my husband and I moved to Virginia Beach. It didn’t take long before my mom and dad followed. Reflecting upon this now has made me realize my mom needed me as much as I needed her.

Tragedy struck when I was 24; my mother was diagnosed with stage 4 cervical cancer. It happened when we were on vacation in MA, so she stayed and was treated in Boston by the best doctors available at the best hospitals in the country, possibly the world. 8 months later while back in VA Beach, she would die in her home, having succumbed to the complications of the cancer treatments.

The moment I saw my mom was no more, I feel like I fragmented. I was 24 and had to go back to survival mode. Work became almost unbearable. I worked at a pharmacy and couldn’t stand hearing customers complain about this and that. My mom never complained. Not during all the grueling treatments she had to endure when she was so unwell. The last thing I wanted to hear was other people complain; at least they were living. Sometimes I would be triggered and have to run to the bathroom and catch my breath. I felt so sick. I couldn’t take care of my husband and my grieving father if I was grieving as well. So one day I decided I didn’t want to feel anymore. Just like that. I stopped crying or showing much emotion at all. A month after my mother died, I found out I was pregnant after 5+ years of infertility.

Courtesy of Autie Erin

I wouldn’t believe it until I saw the first ultrasound with the baby bouncing around. That was my first appointment, and I was also diagnosed with gestational diabetes at the same time. I was forced to take the dreaded glucose test in my first trimester. It seemed like every time I went to the doctors, there was a new problem or something they were concerned about. Since I had decided not to show emotion anymore, my body was absorbing all the blows. It was while pregnant, working in the pharmacy, when I had my first anxiety attack. I walked from the front to the back of the pharmacy and all of a sudden it felt as if I had run a marathon. I could barely breathe. When I told my doctor at the time, they gave me an inhaler and said I had stress-induced asthma. Is that a thing? I wasn’t under any stress. I just walked from the front of the pharmacy to the back. Telling my psychiatrist this now gets a nod – that was a classic anxiety attack. This would progressively turn from generalized anxiety to panic disorder and agoraphobia. Recently, it has graduated to CPTSD with seizing and is something I still fight daily.

Courtesy of Autie Erin

Also while pregnant, I had developed this pain in my chest. I couldn’t quite explain it, only that at times it would almost bring me to tears. After giving birth, I would go to physical therapy to try to strengthen the muscles around the area of the pain and was told the bones in the area were pre-arthritic. Being pregnant was very hard for me, I had to constantly remind myself I had wanted this baby. That he was a gift. When he was born I was over the moon happy. He was the sweetest baby boy. Beautiful blue eyes, just like my mom’s. Our new family kept me busy with purpose.

Courtesy of Autie Erin

I went back to work full time at first, but slowly it proved too hard for me to be away from my son. Work became more demanding. There were leadership changes. A job I once loved was not only taking me away from my son, but it was becoming less and less desirable. In the past, when I lost the love for a job, I would pursue another job. But another job wouldn’t fill this hole. The stress of being away while someone else took care of my child was too great. I wanted him to feel safe always. I needed to be there for him always, just in case something bad happened. I would continue to have minor stress-induced asthma attacks; they would come out of nowhere and strike at any time.

We went through a few more years of infertility until one day I showed some emotion. I cried curled up for 20 minutes because my husband had said he would make me cookies and he didn’t. Sure enough, I was a few days late and a pregnancy test would reveal I was indeed pregnant once again. Sickness set in right away. But this time, our house was for sale and we would be moving to TX, where my hubby’s family would be there to help and costs were much lower. This meant I could finally have my dream of staying home with my babies.

For me, children seemed easy. Babyhood, toddlerhood, I understood. They were like tiny adults that couldn’t talk but needed everything a grown adult may need. How frustrating it must be to not be able to express what they really need, much how I felt inside. Without having my mother to turn to for my children, I researched different techniques, figured out the right schedules, and excelled at being a baby mom. My son was sleeping through the night at 9 weeks, daughter at 11 weeks, in their own cribs. We had mastered swaddling with our first, only to be a rejected calming technique for our daughter. We learned quickly they were each individuals and we would have to treat them as such. I also learned great advice from friends, like your son won’t graduate in diapers. Remember, I had turned off emotion, so mothering became like a calculable job for me.

It was when my daughter was around 2 years old the emotional flood gates were burst open. I watched, helplessly, as she fell down our narrow wooden stairs. I couldn’t save her. Apparently, I let out a blood curdling scream that sent my husband flying off the couch towards the stairs. He was there to comfort her instantly after her fall. That event would spark a weekend of tears. I made a pact with myself I would not hold back my tears again. I was emotional and that was okay. I couldn’t stop feeling completely.

After that, it was like I had a burst of energy. I saw the importance of taking care of myself. I finally got diagnosed with Premenstrual Dysphoric Disorder and endometriosis. I started a treatment that stopped my ovaries from producing estrogen for the endometriosis. And I started medication to help me with my PMDD, to try to regulate my mood. We got a new puppy. I felt incredible. Probably the best I have ever felt in my adult life. I started living a neurotypical, picture perfect life.

About the same time, my sister was contacting me and I was the best support I could be as she started down her path to an autism diagnosis. She was 38. She went through a traumatic stage of events that ended with a diagnosis of Asperger’s. When she first told me she thought she was autistic, I’m embarrassed to say I didn’t believe her. She was just like me. She was the only human I could be my whole self around. I could tell her my thoughts and she would understand them when, at the time, I knew no one else could.

Courtesy of Autie Erin

As I helped as best as I could from afar, I could see this life I had built wouldn’t prove sustainable for me. Suddenly people were looking to me for advice and help. I didn’t understand. Couldn’t they see I was just a broken person on the inside? I felt like an imposter in the life I had built and it felt wrong. I started to become more introverted. I really didn’t understand what was going on.

Fast forward again to today. Today is what matters. Currently, I am facing my monsters. My body continues to revile, but me and my brain will continue to fight the intergenerational urge to conform. When my husband, sister, and I first diagnosed me as autistic, there was no urgency to react. But now it’s like my body wants to conform, but my brain knows better. I am one of those people walking around with an invisible illness. I don’t view autism as an illness. It is a neurotype. But the trauma that was caused by internalizing everything and sucking it up is an illness that has represented itself in many ways. For me, it always seems to represent itself in the form of pain.

I have risen myself from the ashes before, but healing neurotypically is not a sustainable help. I have tried all of those, believe me. Let me heal atypically. Which looks painful, because it is. It may look like me letting go and having a tantrum because I’ve held on for too long. The release is cathartic and helps the pain to subside for a bit. I refuse to give up. This life I created is a life I love. So, excuse me while I learn to fill my own cup. Looking back, I wonder why my doctors didn’t suggest counseling at some point after my mother’s death. I had a few minor ‘breakdowns’ in the past. I had been treated by a psychiatrist before and had been on anti-depressants at various times.

Courtesy of Autie Erin

My coming out as a self-diagnosed autistic woman is a tribute to my sister. She has pioneered her way through many paths unknown, been ridiculed for her choices and has come out on the other side. She is stronger and I know I will be too. I don’t want other strong women like her and I to be thought of as weak. Because we are strong as heck. We straddle the line of neurotypes and somehow make people feel better than we ever could have imagined. We are on the beautiful autism spectrum together. We will always be connected because it is a spectrum and not linear.

Courtesy of Autie Erin

This is only a crumble of my life put on a few pages, but the pain I went through to get it written down was incorrigible. Let us combine our efforts as we realize we are all one in the same. There is no need to fit in because we because as human beings, we already do.”

Courtesy of Autie Erin

This story was submitted to Love What Matters by Autie Erin of Nauvoo, IL. You can follow her journey on Instagram and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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