Take the Long Way Home: Late Diagnosis and Becoming an Autistic Elder5 min read

Editor’s note: This article includes con­tent con­cerning emo­tional, psy­cho­log­ical, and phys­ical abuse.

WORLDS GREATEST GRUMPY OLD LADY CARTOON PHOTO CUTOUTS | Zazzle

(cartoon of stereotypical old lady)

 

I was born in the late 1960’s to an undi­ag­nosed Autistic mother and an abu­sive father with Borderline Personality Disorder. I was the oldest child, and only daughter, in an extended family that still had notions of the proper “place” for females. Consequently, I had to learn very early how to abide by the rules to lessen the emo­tional, psy­cho­log­ical, and occa­sional phys­ical abuse.

These included looking all authority fig­ures in the eye, speaking as little as pos­sible, doing as you were told without ques­tion, and never asking anyone but my mother the dreaded ques­tion, “Why?” And so I began, what was unknown to me then, the process of Autistic Masking.

I learned this lesson well enough at home that when I started at a parochial school, I was well-primed to be the ideal stu­dent. I was gifted, which helped aca­d­e­m­i­cally, and my insa­tiable curiosity made the school­work some­thing I was very inter­ested in.

I had learned early on that in my extended family of teachers, it was expected to always be the best, so I applied myself dili­gently to get good grades. Perfectionism in the class­room was a sense of pride, and helped me avoid some of the abuse. My father had less reason to be upset with me if all my teachers raved about me. This, how­ever, didn’t trans­late well to the rest of school life.

When it came to other chil­dren it was com­pletely obvious that I was dif­ferent. I went through school with more or less the same group of 60 kids from 1st grade through high school grad­u­a­tion, so we all knew each other pretty well.

It reminded me of living in a small town– we all knew the others’ strengths, weak­nesses, and we had long mem­o­ries for mis­takes made. I had a few friends, but they were mostly other “out­casts” — those from broken homes, poor kids, those with phys­ical or neu­ro­log­ical diver­si­ties.

But I usu­ally still didn’t fit in, regard­less of all the work I put into watching and trying to copy what the other girls did. I grad­u­ated with honors, but with a side order of lone­li­ness and depres­sion.

My first mar­riage was short– we had one child together, but mar­ried too young and weren’t well-suited. My second mar­riage pro­duced my Autistic child, but my hus­band was reluc­tant to deal with his severe mental health issues and was very abu­sive. I am on mar­riage number three now.

Through it all I man­aged to get my MA, spend a lot of time as a very poor single mother, work two jobs some­times, and take full-time employ­ment that didn’t use any of my skills or edu­ca­tion.

I got my diag­nosis of Autism after many bat­tles with depres­sion, anx­iety, and com­plex PTSD. The journey there was like many in the Autistic com­mu­nity. Since my youngest child was in 2nd grade, I had been trying to get the schools to test her to see what was going on. It took until she was 14 years old to finally find a ther­a­pist who rec­og­nized it right away.

In the process of researching what was going on with her, and then what I could do to advo­cate for her, so much of what I read from amazing Autistic authors sounded like what I had always been like. Their expe­ri­ences res­onated so much that I approached my daugh­ter’s ther­a­pist and asked to be tested. I was so incred­ibly lucky, at 48 years old, to find someone who would even look into it.

My diag­nosis was life-changing in the best way. It helped me frame my expe­ri­ences in an entirely dif­ferent light. And now, instead of always assuming my job, social, mar­riage, and other fail­ures were entirely due to my per­ceived inad­e­quacy, I had a new lens through which to more real­is­ti­cally examine my past.

I have always suf­fered with two things that, simul­ta­ne­ously, are very dif­fi­cult to rec­on­cile– an extreme sen­si­tivity to the moods of those around me, and Alexithymia (the struggle to iden­tify emo­tions in your­self). As part of my Autistic journey, I dis­cov­ered that all my life I have used songs to help me iden­tify and process these– hence the title of this piece.

I grew up lis­tening to bands from the 1970’s and 1980’s, so this is from where most of my play list is drawn. And when thinking about doing this piece, Supertramp’s “Take the Long Way Home” popped up right away in my mind.

For a lot of us, we are “playing a part in a pic­ture show” every day that we mask, every time we try to be some­thing we’re inher­ently not– whether it be at work, school, or even, sadly, with family and friends. “… there are times when [we] feel [we’re] part of the scenery, all the greenery is comin’ down.”

No matter what we do, we feel like just back­ground noise, on the fringes of a world around us we struggle to under­stand. We’re “for­ever playing to the gallery,” over and over, day in and day out. Which, hon­estly, beats the alter­na­tive — being the star of the show for the wrong rea­sons.

Being a “dinosaur” at the ripe old age of 51, I finally joined Twitter in May of this year. I was a lurker for a while, fol­lowing only my oldest child, an old friend, and some of the people I love from my favorite TV shows. I was amazed when I found that The Aspergian and so many other sites I read that were so incred­ibly helpful on my Autism journey were there as well, so I fol­lowed them, too.

But then, lo and behold, I found more “old ladies” and “old men” like myself. I have finally found a group that under­stands what I’ve been through, and we can ask each other the “Do you…?” “Have you noticed…?” and all the other ques­tions we have been afraid to ask, or couldn’t find anyone to answer. I have also learned so much from younger Autistics.

Being a late diag­nosed Autistic can be really hard. When I get sad pon­dering it, there is one stanza from Supertramp that seems to best sum up what I feel, and help me work through it. It’s a long process, and one that makes me sad for all the lost oppor­tu­ni­ties I had because I didn’t know about Autism. But being an Autistic Elder is my oppor­tu­nity to give someone else the ben­efit of my hard-won knowl­edge and expe­ri­ence.

Does it feel that your life’s become a cat­a­strophe?
Oh, it has to be for you to grow, boy.
When you look through the years and see what you could have been, oh,
what you might have been, if you’d had more time.

Songwriters: Richard Davies & Roger Hodgson/Universal Music

 

 

15 Comments

    1. I appre­ciate it!

  1. I can totally relate to this being … born in the late 60s … aca­d­e­m­i­cally gifted … growing up in a house­hold with rigid tra­di­tional views on social struc­ture … tried so hard all my life to fit in, and unable to under­stand why I was per­ceived as dif­ferent … finally diag­nosed as autistic at the age of 50 … finally having a lens through which all of those con­fusing expe­ri­ences finally come into focus. So … how about Madness? Welcome to the House of Fun, now I’ve Come of Age .…

    1. Yes, I’m finding that a lot of people share this. Glad to have found others, as I thought it was only me!

  2. Sounds so much like my own expe­ri­ence. Born in the early 60s to an abu­sive father and emo­tion­ally unstable mother. I was diag­nosed with cACC (com­plete Agenesis of the Corpus Callosum) and ASD well into my late for­ties.
    The dif­fer­ence being, I was an incred­ibly intel­li­gent young man, but with a cadre of learning dis­abil­i­ties at the same time. Academics were impos­sible for me.

    What the author writes about over-identifying oth­er’s emo­tions as my own, I REALLY get that one.

    Great blog post and THANK YOU!

    1. I’m so glad you could relate. Thanks for reading!

  3. This could have been me in so many ways, except that I’m still fighting to get my 9‑year-old prop­erly eval­u­ated for ASD and have been told that I’m “too social” to be ASD (prob­ably because I am having to learn how to drop the mask and not be afraid to be me).

    My “back­ground music” is the STYX and Larry Gowan discogra­phies — with emphasis on a lot of days on the songs “I’m O.K.” by STYX and “Keep Up the Fight” by Larry Gowan (who also hap­pens to be the cur­rent key­board player for STYX, replacing Dennis DeYoung, even though I knew about him BEFORE he was with that band)

    1. After working in cus­tomer ser­vice most of my life, people were shocked at work when I got my diag­nosis. Just because I “can” act social, doesn’t mean I enjoy it. Takes too much effort and takes a toll on my mental health. Styx? Can’t go wrong there!

  4. Thanks for your article. I am feeling defeated today after being told by the doctor that all the things that I have iden­ti­fied with as masking and autistic burnout are ‘normal’. She only read half my list then decided I have depres­sion and anx­iety because they can give me a pill for that and get me talking to a mental health nurse 😣

    1. That’s what they said for YEARS to me as well. Have you taken the AQ (autism quo­tient) test online? I believe you can print out results. I took the 50-question ver­sion. Reading through the ques­tions was a bit sur­real, though, as I had always told people “I love being around people” and “I love going to par­ties” to fit in. Had to actu­ally think about how I truly felt instead of knee-jerk answers I was used to giving. I hope you are able to find someone who can hon­estly assess you. ♥

      1. Thank you 😍 yes it said some­thing like ‘highly likely’ . I have poor working memory so I can’t remember right now but I feel I relate to most things everyone talks about and it’s always been like that. Thanks again 🙂

  5. I can relate to most of this article; except for a few minor details (youngest child instead of oldest, went to public school, larger junior high and high school, etc), it almost per­fectly describes me, at least through young adult­hood. I got super lucky, though, in finding someone a lot like me to marry, and we’ve been mar­ried over 25 years. We were rel­a­tively early adopters of the internet, and I became skilled in internet research. So when my trou­bled stepson came to live with us (briefly) as a teenager, I took to Google (which was rel­a­tively new then) to try to find what his real issues were. It was there and then that I dis­cov­ered dis­cus­sion boards and chat rooms full of adults with late diag­noses of ASD/Asperger’s, and started finding answers for myself instead of him.

    I have never chased an offi­cial diag­nosis. I know that I am autistic, I have absolutely zero doubt of that, and I’ve just never seen any ben­efit to jumping through the med­ical indus­try’s hoops to have someone tell me what I already know about myself. The ONLY ben­efit I can see in it would be to silence the gate­keepers who try to tell me that I am not autistic because a doctor or ther­a­pist hasn’t con­firmed it. Besides, I have spent my entire life masking and telling authority fig­ures what they want to hear, it is really dif­fi­cult for me to drop the mask, so get­ting the diag­nosis might be tough.

    Anyway, from one 51 year old gifted female autistic Supertramp fan to another, thank you for sharing your story, and showing me yet again that I am not alone.

    1. I’m so glad *I’m* not alone either! 🙂 I went for a diag­nosis for a couple of rea­sons. First, just to know that I wasn’t imag­ining it. Second, in order to get accom­mo­da­tions if I ever needed them for work, etc.

  6. Thank you for sharing. The more I “meet” older (not OLD dammit, I’ll be old when I retire!) Late diag­nosed autistic people, the more I rec­og­nize that a lot of my trauma growing up wasnt a fluke or me being unlucky. Turns out, I’ve actu­ally been much luckier than a lot.

    That’s sad, but reality and I’m glad we can find and sup­port each other. It’s crit­ical.

    On another note, I find the pic­ture at the top of the article mildly offen­sive and mis­leading of the con­tent

    1. Trauma in our age group is very common, it seems. I’m not sure which pic­ture you are refer­ring to, but I’m sorry it seemed offen­sive. I wear my age proudly, and just find stereo­types like this amusing.

Talk to us... what are you thinking?