Why realizing I was autistic meant realizing I was normal

Different autistics have different experiences of oppression and masking. A while ago me and my autie friend F were discussing the main character of the Swedish-Danish series The Bridge, who is autistic. My friend commented that she would like to live in a society where people were allowed to be weird like that character did.

To me on the other hand, the character seemed to be “allowed to be weird”, but she also seemed lonely. I have lived in her society, and for me it was lonely. Like the autistic character but unlike F, I grew up in a family where very different people were accepted. For instance, I was never discouraged from playing alone or wearing boys’ clothes. However, the condition on this freedom was that I must not need anything from others, I must not be affected by others, I must not be “weak”.

In other words, it was ok to be different, but it wasn’t ok to need the extra assistance that often comes with being different. While the social model of disability states that disabled people don’t have more needs than abled people, they certainly have more noticeable needs. And in a society which values individuality and independence such apparent “dependence” on others was very frowned upon as something which reduced your worth somehow.

So, I couldn’t have “special needs”, including needing help to deal when some people treated me in negative ways because of my differences (ableism).

As I have detailed in another post, I reacted by becoming extremely independent and rejecting many of my fundamentally human needs. For instance: I wasn’t accepted in social groups – I decided I didn’t need belonging. I didn’t have any protection from the incoming stimuli – I dissociated and decided I didn’t need interaction. I wasn’t allowed study in a way that worked for me – I decided I didn’t care what people thought of my performance.

Disconnect from others in this way, and retreating to your own world is not an uncommon reaction to being in an overwhelming environment without support. In “Nobody Nowhere” Donna Willians writes about using this coping mechanism during her autistic childhood: “‘My world’ may have been lonely but it was predictable and came with guarantees”.

In an important way I was allowed to be weird: I wasn’t bullied and people didn’t attempt to make me “normal”. But this freedom was given on the condition that I was numb enough to tolerate living in a world that wasn’t adapted to me without support. Ironically the price I paid for being seen as a whole, worthy person was an ability to be seen, and see myself.

Consequences

To the outside I looked extremely independent, and in a sense I was independent from others, but I was also completely adapted to what society thought was acceptable – different only in the ways that also meant needless. There is also an irony in a society that coerces people to be “independent” from others in this way. How independent are you if you are coerced?

Denying my needs made me thick skinned, alexithymic, dissociated, sometimes cold. I learned that my needs didn’t matter, that I was too much for other people to handle. With time I became depressed.

And through all of it, I didn’t realize that the extent to which I was doing this – numbing myself, making myself invisible. When everyone else thought I was acting from desire (I just seemed to love being on my own etc.), how was I to know I was acting from necessity? How was I to know that not everyone else denied their needs in the same way as a sacrifice to be seen as valid human beings?

Switching strategy

When I reached young adulthood I found some settings in which being invisible and numb wasn’t enough if I wanted to be “a successful adult”. So I learned to fake it, to put on a neurotypical mask. I wasn’t perfect at it of course, and it took enormous energy, but I was good enough at it to get by.

While this was hardly ideal, we can create ourselves partly through the personas we put on, and I learned some things about myself through this experience. I learned for instance that showing some emotions can actually be pleasant for me.

This experience, along with finding validating friends, made me realize that the unemotional, invisible, needless person I had been for most of my life had not been all of me. In searching for answers regarding who I actually was, I found autism.

Not “faking it” is not enough to be “who you are”

For me, realizing I was autistic meant realizing two things. The first one is standard for all autistics: I learned that I was different – I had different needs from others. For instance, I can’t tolerate the same levels of noise and I find social interaction more difficult than others to learn.

The second realization that came with the autism label was that in some very important ways I was the same as everyone else – I rediscovered those “normal” needs that I had denied in order to get through the world in an independent manner as a person with differences:

It wasn’t the case that I didn’t need to connect with people, I had just learned to do without. It wasn’t the case that I didn’t need my feelings to be taken into account, I had just learned to do without. It wasn’t the case that I didn’t have a need for self expression, I had just learned to do without.

Buried under an unemotional shell were deep feelings. I realized that just like everyone else I had a need for acceptance, for community, for social support, for comfort etc.

While my differences were in some sense accepted by my family growing up, the combination of these differences and normal human needs was not. Most of my upbringing I was not pretending to be neurotypical, and yet I wasn’t able to truly be myself either.

So when my friend F tells me she wishes she was allowed to be weird I think… I wish I was allowed to be weird And have the needs I have. To be weird And be interdependent. How do I go about combining these two? More about that in the next post.

 

Further reading:

“Nobody Nowhere” (book) by Donna Williams

My autism journey in 5 songs – towards a truer version of myself

Songs are an incredible means of expression and connection. As a teenager I was dependent on music to get through the days. I used it to regulate my mood, as a way of connecting with people (the songwriters) and as a way of regulating information intake from my environment. When I realized I was autistic, I created a playlist of songs to take me through this new journey. Below I list five songs from that playlist. Each tells a story about my coming to terms with who I am and what this means in my life, in my family and in my society. I will put the full playlist with links at the bottom of this article.

 

Finding validation – “Strangers Like Me” by Phil Collins

“Strangers like me” expresses the feelings of Tarzan – a human raised by apes – when he first meets another human. Having grown up very isolated, discovering that there are other people with struggles and joys similar to mine, was a hugely positive revelation for me.

Through meeting and reading texts by autistic people I learned about my own needs, abilities and ways of functioning. I also found connection and community. For instance, I realized that there are other people that use songs as a way regulate their mood and their information intake. It was only though this validation of who I am that I could build up a new image of myself and take important steps towards self-acceptance and building a more accessible life.

I am very grateful to the autistic community for this, and hope that I will be able to keep learning from other autistics.

 

Whatever you do, I’ll do it too
Show me everything and tell me how
It all means something
And yet nothing to me

 

I can see there’s so much to learn
It’s all so close and yet so far
I see myself as people see me
Oh, I just know there’s something bigger out there

 

I wanna know, can you show me
I wanna know about these
strangers like me
Tell me more, please show me
Something’s familiar about these strangers like me

 

 

Defining yourself for yourself – “Listen” by Beyoncé

The song “Listen” from the musical “Dreamgirls” describes how people try to shape you into someone you are not, rather than listen to your own understanding of who you are. My family has been slow to accept that I am autistic. Understandably they have a certain image of me, and when I told them something about me which contradicted that image they pushed back against it.

It was very difficult for me to go through a change to become a truer version of myself when there was a constant suggestion from the people closest to me that my understanding of myself was wrong in some way. I sent my parents this song to make them see that they were holding me back through not accepting my own way of defining myself.

My parents’ response to my attempt to define myself was confirmation of their inability, even when I was younger, to see aspects of who I am. This has to do with their own fears and does not reflect on me. Knowing that, I could see that I needed to distance myself from their view of me, in order to become more myself. I listen this song to remind myself that I need to follow my own understanding of who I am, and not be shamed into staying within a mould that someone else feels more comfortable with.

 

Oh, the time has come for my dreams to be heard
They will not be pushed aside and turned
Into your own
All ’cause you won’t listen

 

Listen
I am alone at a crossroads
I’m not at home in my own home
And I’ve tried and tried
To say what’s on my mind
You should have known

 

Oh, now I’m done believing you
You don’t know what I’m feeling
I’m more than what you made of me
I followed the voice you gave to me
But now I gotta find my own

 

You should have listened
There is someone here inside
Someone I thought had died
So long ago

 

 

Rejecting society’s shame – “The Village” by Wrabel

The Village was actually written about a transgender teenager, but I think it transfers to the struggles of many groups. This song helped remind me that in so far as my expression of my identity went against what society sees as acceptable, the blame was not on me.

When you willingly take on a label with negative connotations people often act like you are attention seeking, lazy or just misguided. It is so easy to doubt your own understand and to feel ashamed for expressing yourself. Especially when you have been raised to deny your needs. However, you do not have to take on this shame. I recently read a post by an LGBTQ person who wrote:

“The shame is not yours to own, It belongs to those that gave it to you. It is for those that clothed you in that shame to take ownership. […] Those parents, family members and friends that shamed you for being not who they wanted you to be. The shame is theirs. Don’t take ownership. However long you have worn and lived with that shame, it is never too late to disrobe.” source

That shame surrounding differences is so pervasive in our society. Now that I understand that I am autistic I can identify that shame in the way I was raised, and the way people react to my label. But the people who say I am the source of this shame are wrong. It is not my differences that are causing problems, nor am I confused or seeking excuses. I am expressing who I am. And when that makes others feel ashamed for me, there is something wrong on their end.

 

They say, “don’t dare, don’t you even go there
Cutting off your long hair
You do as you’re told”
Tell you, “wake up, go put on your makeup
This is just a phase you’re gonna outgrow”

 

There’s something wrong in the village
In the village, oh
They stare in the village
In the village, oh
There’s nothing wrong with you
It’s true, it’s true
There’s something wrong with the village
With the village
There’s something wrong with the village

 

 

Connecting with a societal struggle – “Wild Hearts Can’t Be Broken” by P!nk

Sometimes it helps us in our personal struggle against oppression if we can see that we are a part of a bigger fight for the equal rights of a whole community. Through reading the work of autistic people and people from other marginalized groups I was able to adopt a societal level of analysis of my existence in this world. I developed a bigger picture understanding that I had been missing, and which had made me ignore my needs. This struggle in turn is validated by songs like “Wild hearts can’t be broken”.

Seeing things through the perspective of a societal struggle can help us feel that our personal struggle is part of a movement that is positive for others, which is important when others accuse us of being selfish for drawing attention to our needs.

It can also be a comfort to be able to connect with other groups that have fought similar battles. Some have fought for longer and gotten further than the autistic community, and all have something to teach us.

Furthermore, this perspective can validate our struggle as legitimate, thus defending against the accusations of creating problems that don’t really exist. To be accepted as who we are and to go through our lives on equal terms are not privileges, they are rights. Songs like “Wild hearts can’t be broken” validate that the resistance in society towards people like me is real, and my fight to be accepted as I am is important.

 

I fight because I have to
I fight for us to know the truth

 

This is my rally cry
I know it’s hard, we have to try
This is a battle I must win
To want my share is not a sin

 

There’s not enough rope to tie me down
There’s not enough tape to shut this mouth
The stones you throw can make me bleed
But I won’t stop until we’re free
Wild hearts can’t be broken
No, wild hearts can’t be broken

 

You beat me, betray me
You’re losing, we’re winning
My spirit above me
You cannot deny me
My freedom is burning
This broken world keeps turning
I’ll never surrender
There’s nothing, but a victory

 

 

Accepting myself – “This Is Me” by Keala Settle

My parents’ explicit response to my increased self-realization was difficult. But even more of a hindrance to my self-understanding were my own internalized ideas of who I ought to be. Most central have been my ideas about needs, weakness and worthiness.

Because of the way I was raised, I associated interdependence with failure. In particular, I did not feel safe acknowledging those of my needs that others could not easily meet. And so when I started understanding and expressing my autistic needs better, it brought about deep feelings of shame, insecurity and worthlessness. Through all of this I needed to keep reminding myself of what I knew intellectually: that having needs is normal and that being yourself can’t be shameful.

Despite coming from a very questionable movie, “This is me” has become a theme song for those who are different and facing rejection. For me it is a reminder that difference, even when it means being bruised, is not weakness, it is bravery.

 

Another round of bullets hits my skin
Well, fire away ’cause today, I won’t let the shame sink in
We are bursting through the barricades and
Reaching for the sun (we are warriors)
Yeah, that’s what we’ve become (yeah, that’s what we’ve become)

 

I won’t let them break me down to dust
I know that there’s a place for us
For we are glorious

 

When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me

 

 

The full autism playlist with links