Getting personal: diagnoses and identity: I am autistic

I was diagnosed with Asperger’s and social anxiety at the age of 13.

They changed my diagnoses to Autism Spectrum Disorder with symptoms of depression when I was 16*

I was re-diagnosed by my new mental health care provider at the age of 18 with Autism Spectrum Disorder.

*This is around the time when they changed the DSM, or the diagnostic manual

Looking at this, you’d think I ‘healed’ or ‘got better’. I didn’t. They just didn’t diagnose me again. I’m still in the same rollercoaster that is my life, going up in down in spirals of anxiety, depression, high-functioning and low-functioning.

I can’t be defined by one label, one diagnose, one word, and this annoys me. Because people categorize almost everything. They think that ASD/Autism in one word can define me, but they’re wrong. Because most people only have one type of image and/or person they associate with autism, and when I don’t fit that image, I am told this:

You don’t seem autistic? Like… you don’t look like you’re autistic, you know?

This isn’t a compliment. These people tell me it is, and I do what I was taught to do when I receive a compliment: I say ‘thank you’.

But I don’t mean it. And I am very sick of accepting these compliments just because people ‘mean well’.

So do I. I mean well in telling you that I’m autistic. But when you say I don’t seem/look it, that gives me negative feelings. Feelings of self-doubt, anxiety. Feelings that could help me spiral down toward a panic attack, melt-down, or even depression.

Because I hide most of my autistic traits daily in order to blend in, to avoid being bullied like I was as a kid, to feel somewhat normal. I hide these traits to come as close to acceptance as I possibly can. But often times, this means I don’t know who I really am. Am I the person I try to hide, the person I try to be, or somewhere in between?

I suffer because I try to act like I’m not autistic, and you complimenting me for doing a good job on masking* is toxic for me.

*Masking is the word they use when referring to autistic people trying to pass as non-autistic

No, I don’t wish for you to feel guilty for saying such things. I want you to think about it. I want you to do what they say autistics can’t do: empathize. Imagine you’re me, you’re opening up about being autistic, and then you’re told your looks don’t match the image of autism.

Imagine hearing again and again the underlying assumption that autism is negative. Yes, it can cause many problems and difficulties. Yes, there’s a whole anti-vaxx movement that ignores science and doesn’t let kids be vaccinated because of fear of autism.

But I do not suffer from autism. Sometimes I do, but it’s usually not directly from autism. I don’t carry around my autism. I am autistic.

And no, autistic isn’t a bad word. I know people use it as a bad word, but it shouldn’t be used in that way. It shouldn’t be used to describe negative autistic stereotypes.

Not all autistic people meet all the criteria, no two autistic people are the sam. Sure, some may meet all DSM criteria, but the intensity of these often vary as well. It’s the same way non-autistic people can share traits. But in this case, many of the traits can be disabling.

Yes, I see autism as a disability. It is disabling for me to go from high-functioning to low-functioning in a matter of hours, days, weeks, months. It is disabling for me to either have too much anxiety, or don’t think about anything at all. It is disabling for me to have to recharge after everything, especially after socializing or being around many people in overal. Sound, light, smell… they can be so overwhelming. Travelling by train is a nightmare for me, but I have no choice but to do so if I want to see my family every now and then.

So now you know. I am no expert on autism, but I am autistic and I know other autistic people, mostly online. Many of us thrive online, find safety in it. Because we can be in a safe sensory-limited environment and express ourselves without having to worry about social rules and sensory issues.

No two of us are the same. If we don’t meet your image of autism, then that’s not on us: it’s on you.

Yours truly,

Rachel

Graceful Goddess

A very mortal and ungraceful autistic individual

 

 

 

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