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.

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