What Autism Means to Me5 min read

For as long as I can remember, I have been con­sid­ered odd. Not the sort of odd that makes me unlik­able, but the type of odd that makes it dif­fi­cult for me to be under­stood by or under­stand others. My values and needs tend to vary greatly from those around me, which has made me a black sheep of sorts. I’ve spent a large chunk of my life asking myself, “What is wrong with me?”

When I was a young child, I did not have a lot of friends, but I was not lonely. I was con­tent with my own com­pany in my world of quiet imag­i­na­tion. I did not want to go to sleep­overs or big par­ties; I wanted to be at home in my room. I pre­ferred and enjoyed my safe space.

I specif­i­cally remember a teacher telling my par­ents she was wor­ried about me because I didn’t socialize as much as the other stu­dents and seemed to only be happy when she was reading aloud to the class. My par­ents described me as timid and shy and encour­aged me to break out of my shell. They meant well, of course. But, what they did not under­stand at the time was that I was not strug­gling or unhappy. I was simply being myself.

My-distorted-sense-ofMy sur­rounding envi­ron­ment fed me the mes­sage that I should be dif­ferent than I was. I should talk more, do more, blend in better, and try harder to make friends– so I did. I began adapting to the expec­ta­tions of those around me before I was old enough to realize what I was doing, and I was very good at it. So good at it, in fact, that I some­times fooled myself. Over the years I have been a social but­terfly, a party girl, a fit­ness junkie, an avid church member, an angry agnostic, an intel­lec­tual, and many other roles I con­torted myself into. At some point, I lost the ability to define where my mask ended and I began. I was everyone and no one all at once.

The reper­cus­sions of my social per­for­mances were nuanced and immea­sur­able. I put on a good face for the out­side world, but at home I fell apart. I was anx­ious, angry, and com­pletely over­whelmed. An improp­erly orga­nized cab­inet could launch me into a full blown panic attack. Conflict with a sig­nif­i­cant other left me reeling for days. A hug from a friend often felt like an assault, because the phys­ical inti­macy was too much to bear. I felt inca­pable, unworthy, and broken– and I loathed myself for it.

Shortly after my daughter was born, I was diag­nosed with Borderline Personality Disorder* (BPD). At the time it seemed to fit. My rela­tion­ships were def­i­nitely stormy and unstable, I had almost no sense of self, and my con­stant anx­iety devel­oped within me a deep desire to just be done with life itself.  I attended a Dialectical Behavior Therapy skills group and saw a ther­a­pist every week for two years. Overall, it was a helpful expe­ri­ence. I acquired the skills I needed to develop a life worth living, and for that I will be for­ever grateful.

Still, BPD was a heavy diag­nosis. I had been told that my per­son­ality itself was dis­or­dered. Society at whole and even most mental health pro­fes­sionals view Borderlines as manip­u­la­tive lost causes. The label made me feel irreparably broken, and I was deeply ashamed.

Earlier this year, I became casual acquain­tances with a woman who had interned in my DBT skills group. I did not remember her, but she did remember me. As our rela­tion­ship pro­gressed into a friend­ship, I dis­closed with her how poorly I felt about my diag­nosis. I told her that though some of the symp­toms for the dis­order applied to me, there were sev­eral key ones I did not see in myself at all.  She then told me about the link between females with Asperger’s and BPD. She sent me sev­eral cred­ible arti­cles which dis­played the over­whelming rate at which women with Asperger’s syn­drome are mis­di­ag­nosed with Borderline Personality Disorder, and sug­gested I get eval­u­ated to see if I had been inac­cu­rately diag­nosed.

At first, I thought she was crazy. I had great social skills and no intel­lec­tual delays; there was no way I fell on the spec­trum. But, I decided to humor her.  I took an assess­ment and found with no room for doubt that I was, indeed, an adult living with Autism.  I imme­di­ately dove deeply into research (which turns out to be one of my many autistic traits).  I was sur­prised to find that I hit the marker for about 80% of the pos­sible traits of Aspie women.

I learned that what had pre­vi­ously been labeled as mood swings are really sen­sory melt­downs for me. A huge part of my anx­iety derives from over-stimulation. My need for order and con­sis­tency is a by-product of the way my brain processes things, not an OCD ten­dency . My dis­torted sense of self came from a desire to please others and meet soci­etal expec­ta­tions, not a true iden­tity dis­tur­bance. It was as though I had put on glasses for the first time after twenty-eight years of unclear vision. I was not a mon­ster or dam­aged goods; I was simply neu­ro­di­verse.  I felt dif­ferent because I was dif­ferent. I am dif­ferent, and that is okay.

I face strug­gles every day that most neu­rotyp­ical people will never endure. Behaving prop­erly in social sit­u­a­tions is usu­ally a dif­fi­cult task for me, and I am easily over­stim­u­lated and socially exhausted. I am tex­ture sen­si­tive, and I swear I can feel noises. While I often appear cold or dis­tant, I actu­ally empathize with others to the point of my own emo­tional suf­fering.  Almost every single day has sev­eral serious obsta­cles.

But, I also live out won­derful moments that the average person never will. I feel things down to the core of my bones, so when I encounter joy it is all-encompassing. I per­ceive color and music as a full body expe­ri­ence. I am capable of working much faster than most people in the areas of my spe­cial inter­ests. I’m rarely bored, as my thought life is very thor­ough and enter­taining. I am cre­ative, artistic, engi­neering, and resilient. I have a unique per­spec­tive on the world that I would never want to change. An Asperger’s diag­nosis has been the single most piv­otal and freeing expe­ri­ence of my life, and I am com­pletely con­tent in my brand of normal.

*Note from the author: Borderline Personality Disorder is a serious mental ill­ness which occurs when a sen­si­tive nature is com­bined with trau­ma­tizing events, usu­ally in child­hood or early ado­les­cence. Those living with BPD are not at fault for their dis­order and deserve fair treat­ment, kind­ness, and respect.

2 Comments

  1. Lovely writing and cer­tainly useful to others.

  2. Great post. It’s blogs and vlogs like yours that are more helpful to people on the spec­trum or those that think they might be. I was diag­nosed last year (late diag­nosis) and part of the reason for that was that Asperger’s wasn’t widely known about, cer­tainly not here in the UK. Also, I am an artist, so my odd quirky behav­iour and my obses­sions with art and ideas were put down to an artistic tem­pera­ment (another stereo­type) Interestingly, BPD was some­thing that was sug­gested to me, but I had already read about autism and that made so much sense to me.

    From the research that I have read on autism, there are many gaps in it. There is a heavy focus on chil­dren, but it falls off in rela­tion to adults as if it’s some­thing that we grow out of, and there is very little on girls/women on the spec­trum. I’m not sure why that is though, but I’d like to find out.
    Have a nice day

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