Women and Autism: At age 29 I received an autism diagnosis

Amber Sayer

The sad truth is that women, particularly undiagnosed, on the spectrum are at risk for various comorbidities like major depressive disorder, eating disorders, sexual assault, among others.

By Amber Sayer

I’ve been diagnosed and labeled with all sorts of things in my life, spanning the full gamut of medical and mental health issues, and while most transitions in my life seemed to bring about a host of new symptoms and resultant diagnoses, nothing really tied the whole picture together. Nothing ever truly explained why I felt so different, so off, and so close yet so far from everyone and everything I wanted to be. The one consistent thing in my life seemed to be the fact that I struggled with things that other people didn’t seem to struggle with and that I also didn’t know how to articulate these challenges. The irony was, for a person who is exceptionally gifted at finding patterns, I saw no method in the madness, no similarity in the symptoms and difficulties, and no way to predict or understand when something was going to be tough for me.

It wasn’t until early summer of last year, just before turning 30, that the pieces finally came together: I was diagnosed with autism. I, like many, received what they consider “a late diagnosis,” which is particularly common in women because of both a lack of understanding in terms of the presentation of autism in women, leading practitioners to miss the diagnosis, and to our uncanny ability to camouflage amongst neurotypicals by learning and emulating their behavior. (We are good at memorizing patterns (even in social behavior), perhaps to our detriment!)

For me, autism explains so much. It’s funny, because I think one of the symbols used by the autism community is the puzzle piece and although I don’t know much about this, I do know that for me, receiving this diagnosis was like finding that puzzle piece (or two) that slipped under the rug and finally fills the blatant gap in the middle of what should be a complete picture. In my own ignorance, I had no idea what autism was really like, especially in women, for which it can be quite different than media portrayals (think “Rain Man”…I’m nothing like that!).

For most of my life, I feel like I’ve lived two lives that are concurrent but not parallel. They bump into one another, they pull and push, they fight me for dominant expression because in any given moment, only one really gets to show its face. I have the life that I try to live externally: Here, I am a student of the world. I constantly observe, catalog data, categorize, and try to present myself the way I see in those around me. I carry on conversations by learning what to say, I go out, I laugh, I try to join activities, I work. This life exhausts me because it’s foreign to me. It’s a constant game of trying to understand, of calculating, of interpreting. It is somewhat like playing a character. It’s stressful because there is always the risk of messing up, which could open the windows for the other part of me to come out, to expose my weirdness. It wipes me out so much that prolonged periods of such behavior caused doctors to be concerned about my physical health: was it chronic fatigue, lupus, another underlying autoimmune issue?

The other part of me looks just like everyone else at first glance. But I’m different.

This part of me can’t stand the feeling of socks, tags, certain shoes, or seams so much so that it causes vomiting. It prevents me from tolerating things touching my skin in certain ways. I can’t wear my hair down and people call me a tomboy. Some people who have known me for 10 or 20 years have never seen my hair down. This part of me can’t take noises, especially repetitive ones. I can’t tolerate certain food textures without gagging, and while in full disclosure I did have an eating disorder as a teenager, I have since learned this is unfortunately common for women on the spectrum for a host of reasons, one of which I imagine is sensory-based. My list of sensory issues is so vast that it could be its own tome, but I will just say, for me at least, it is the most difficult part of my autism.

In addition to affecting the five senses everyone thinks about, autism also impacts proprioception, vestibular function, and what is known as interoception (the ability to sense internal stimuli such as hunger, body temperature, the need to use the bathroom, etc.). The sensory processing challenges of autism make it hard to be comfortable in my own skin, in the “comfort” of my own home where we can control the environment as much as possible. The real world? That’s a minefield of sensory bombardment; it’s one of the main reasons pretending to be normal is so exhausting.

The sensory challenges aren’t the only difficulties that the “real me” faces, and I’ll go into these more classic ASD-related difficulties another time, I imagine. The sad truth is that women, particularly undiagnosed, on the spectrum are at risk for various comorbidities like major depressive disorder, eating disorders, sexual assault, among others. Unfortunately, all of these have applied to me and I suffer the consequences of them today.

While I could get into each of my comorbid condidtions separately and maybe will eventually, I share this because it’s one of the main reasons I’m choosing to speak up about my autism. Yes, it’s true that people on the spectrum (and people who aren’t) have lots of wonderful gifts. And yes, it’s true that we can blend in very well and “act normal,” evade diagnosis, and “be successful” in work, relationships, and life. But it’s also true that autism isn’t a minor challenge. It’s a real diagnosis that indicates a difference in the brain. Our brains aren’t worse, they aren’t better, but they are different. The issue with late diagnosis is that it further engrains the feeling of “differentness,” of confusion, and can exacerbate the challenges of the “disorder.”

My feelings of weirdness, loneliness, and a lack of belonging and understanding myself has caused major self-esteem issues and depression, so much so that at times in my life, I’ve been heavily medicated and suicidal. My inability to sense danger and to read people well likely contributed to my attack. That single day saddled me with what I will honestly admit is pretty debilitating PTSD. While I’m doing a lot better since that trauma in many ways, quite frankly, I have no confidence it won’t happen again unless I avoid people, which I don’t want to do. Had I known I was autistic younger, I may have devoted more attention and invoked more specific training to understand predators or at least how to defend myself. If nothing else, it may have alleviated some of the blame I put upon myself for so long.

I want to make it clear that I’m not bitter or upset that I wasn’t diagnosed earlier. I don’t blame all my weaknesses, challenges, and poor choices on being autistic. Receiving the proper diagnosis, even if “late,” simply provides more clarity for which to understand myself and learn to cope better, love myself more, be a better partner and friend, feel healthier, recognize red flags or challenges before they derail me, and feel less alone and confused.

The day you stop learning and growing is the day you stop living.

My goal is to begin to embrace who I am, to get to know myself better, to let others into my world a bit more, and to do my piece by opening up a little so that more people are aware of the tribe of autistic women. My hope is that increasing awareness will bring earlier diagnosis and possibly prevent some of the battles I faced for younger girls on the spectrum. An autism diagnosis doesn’t guarantee the struggles I have, it doesn’t justify my mistakes or shortcomings, but it is a bit like finally getting glasses when you’ve been squinting, stumbling around, and seeing everything blurry for years. I guess this analogy is particularly apropos for me: I just got glasses!

So, to each person that reads this, whether I know you or not, thank you for your time, your interest in this topic, and for helping me start this discussion. Please connect and question me in any way that feels right to you. We are all at different parts of our journeys and in different paths but ultimately, we all, I hope, are just trying to do our best.

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This was originally published on Amber’s blog Processing Problems: Sensing I am a Work in Progress.

6 Comments

  • Hi Amber, You may remember me from the Thrive with Asperger’s FB page. I always enjoy your comments and I enjoyed this post. I don’t know if you recall but I don’t have AS. My husband does and it helps for me to understand what a person on the spectrum goes through. One thing I’ll say is that I’ve gone through a lot of the same things as women with AS go through, i.e., eating disorders, anxiety, chronic fatigue. I think the main difference is that I never had problems trying to fit in, read signals, understand others or have them understand me. I still had lots of the other issues. I wish you a happy life and all the very best! Thank you.

  • Amber Sayer says:

    Thank you Danette. Of course, I remember you; you are a great source of support. Thank you for sharing your connection and empathy. It helps us all feel less different.

  • Steven says:

    Hi Amber, this is Steve from NYC, you were my physical therapist when I had ACL replacement and we recently reconnected over email. I just found this out about you and I am happy that you found your puzzle piece. I have always found you to be such an amazing STRONG woman. I can’t tell you how much I respect and admire you. Amber, you an Inspiration. Keep staying strong and always know I am your friend.

    • Kerry says:

      This message made me cry. I don’t know you, Steve, and I don’t know Amber; but your supportive and affirming response is so precious in a world where autistic women are so regularly disbelieved or their struggle in some way is belittled by a neurotypical person who just has no idea how hard life can be for us. I hope other neurotypical people read this and will say something similar the next time an autistic person trusts the world enough to reveal their diagnosis – I still haven’t.

  • Ron Kerns says:

    My “late diagnosis” came at age 46.

    Your piece here….could have easily have been written by me. I’ve said, or thought, so many of the same things you did.

    Though, the ONLY reason I got diagnosed….is because of at TV show, which had an autistic character that seemed much like me when I was a kid (Max on NBC’s “Parenthood”)…it got me googling….and suspecting. Then, a few years later…I actually pursued a diagnosis.

    If it wasn’t for that show….I’d STILL be struggling…and wondering what was ‘wrong’ with me.

    Question: Now that you know you’re autistic….do you get people who have known you for years….questioning your diagnosis…and, actually telling you, “there’s no way you can be autistic”?

  • Ola says:

    Hi I think myself and daughter are autistic too I am 52 and she is 13 and we really struggle most days with competing needs. Have just booked a flight to go on holiday and just found airport offer a service for autistic people so we have booked assistance for us to get a quiet space. My life of struggling has led to chronic fatigue and only now am I starting to ask for what I need to feel safe and not constantly overloaded. Keep well and great article.

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