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

I choose an accessible life

Sometimes I feel trapped by the things I cannot do because of my disabilities. Then I have to remind myself that I have agency. I did not choose my disabilities but I am choosing the life I want to live with my disabilities.

I choose not to make myself ill through going beyond my limitations.

I choose to care for myself.

I choose to have compassion with myself so that I am able to have compassion with others.

I choose self expression.

I choose being present and connected.

I choose to value myself.

I choose to make accommodations.
I cannot control everything, but to a degree I can choose to create a life that is adapted to my disabled needs. And I choose an accessible life.

Not believing people in a helpless position when they tell you about their needs is an abuse of power

TW: mention of abuse, rape, sexual abuse

For the longest time I’ve had a phobia of situations where others have power of me and might not listen to me, like being in a mental hospital or being raped.

At the same time I have a very shaky relationship with authority figures and I really dislike having power over others, especially being in any position where I might have to go against their will. This aversion is strong enough that I’ve avoided getting pets and felt unsure about wanting children because of the power dynamic I would have to be part of.

In short, I have difficulty trusting that people in power will listen to and care for the people they have power over.

I have often been surprised to realize that my problems mimic the problems of people who have experienced abuse by authority figures.

I have had loving parents so I believed it couldn’t be their fault. Instead, for a long time, I suspected that I had been sexually abused by some stranger and forgotten about it.

It wasn’t until I realized I was autistic that I started understanding that my parents abused their power in their treatment of me.


Autistic people have special needs. They experience the world differently. For instance, what is painful for an autistic person is not necessarily painful for the majority of people.

Now, a person who believes that the child’s needs are safe and worthy of being met will meet them, even though they are different. A person who sees needs as dangerous, on the other hand, will see special needs as particularly problematic and will try to “train them out of the child”.

Very indirectly, this is what my parents did.

Even after I realized that my parents neglected my needs in this way I couldn’t see how this related to my fear of people having power over me. It’s not like my parents beat me, controlled me or humiliated me. They were all about independence and autonomy.

Then I realized that for small children this kind of neglect is a form of abuse of power.

Telling a child that they ought to be more independent and their needs are not real or worthy of being met is an abuse of power.

Let me explain.

Small children are helpless. They depend entirely on their parents meeting their needs. This means that the parents have a responsibility to meet their needs. And refusing to do so is an abuse of power.

The situation is similar to one where a person in a nursing home asks for help to go to the toilet and the nursing staff refuses to help them. This is clearly neglect. And because of the power dynamics it is also an abuse of power.

Being unable to meet the needs of someone who is helpless is not always an abuse of power. So, what makes this kind of refusal abusive? The fact that the person in power is taking in what the helpless person is saying about their needs (regardless of whether they believe them), and Choosing not to act on it.


The message that the helpless person internalizes isn’t that the people in power are inadequate to help them, the message is that their own needs are not real or worthy.

How does this lead to a fear of people having power over you?

If you believe that people will not meet your needs, will not listen to you, will not believe you, then anyone having power to meet or not meet your needs is dangerous. And then depending on other people in any form becomes dangerous and power dynamics start to look inherently abusive.

So you make yourself independent. And you react negatively to others who show needs, because they remind you of your own vulnerability. And you try to help “train it out of them”.

And so the cycle continues.

Abled and disabled dependence

I like to sleep with a plushie
I become overwhelmed by loud fans
I get tired when you change my plans
I get frustrated when I have to use a new computer
I sometimes communicate through writing instead of speaking
I am calmed by tight squeezes from my boyfriend

You call me childish, dependent, exaggerating

I travelled alone on an airplane for the first time when I was 6
I made the independent decision to become a vegetarian when I was 8
I took complete responsibility for my studies at the age of 13
I took on economic responsibility for another person when I was 17
I am studying at one of the top universities in the world.

Do you call me childish, dependent, exaggerating?

You become uncomfortable when others look different from you
You care so much about being accepted that you bend who you are to fit in
You become frustrated when others don’t use oral communication
You have trouble making a plan and sticking to it

You call Me childish, dependent, exaggerating

I am no more dependent than you. The world just doesn’t accommodate my dependence like it does yours.