Autistic Interviews #20 Anonymous

Welcome to the series of online interviews “Autistic Interviews”!

Here you will find different Autistic Voices and Real Life Stories shared, each one unique and highlighting different lived experiences, whilst sharing a common ground: autism. Participants choose which questions to answer, in their own style, making each interview a totally authentic real life story! 

There will be more interviews being conducted in the future including more Autistic Interviews, Family/Carers/Friends Interviews, Self Diagnosers who were assessed and told they are not autistic (what happens to them?!), and collaborative interviews with multiple autism folk answering questions together for a super interesting look at the spectrum! 

If you, or someone you know, would like to take part in future, please email auntie-autism@mail.com to be alerted about and sign up to future interviews.

Views expressed in the interviews are the individuals, not my own. 

Now, for the next interview in the series, here’s Autistic Interviews #20 Anonymous:

Name: Anonymous

Age: 33

Sex: Identify female AFAB

Gender: AFAB

Nationality: White

Diagnosis: Self diagnosed age 32

Are you seeking diagnosis or plan to in the future?

I would like to be professionally diagnosed but I can’t afford diagnosis.

Why is diagnosis important to you?

Feeling validated, possible resources, and even having my professional diagnosis to show in work places so it’s known I’m not ‘faking’, hopefully it would allow helpful accommodations to be made

Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other? How do these terms makes you feel?

I consider it a different way of processing. Autistic people may have different abilities and have things that may be more difficult than neurotypical people.

In short, there is nothing ‘wrong’ or ‘bad’ when it comes to autistic people.

Is anyone else in the family autistic? 

My dad is self diagnosed and one of my siblings is self diagnosed.

When and how did you realise you are autistic? 

Throughout my conscious life I have always felt out of place, like I don’t quite fit with my peers.

I have spent majority of my years in what I thought was depression and anxiety, I always thought there was something wrong and I could never figure it out. Come to find out I was in major burnout.

It wasn’t until a few years ago that I saw videos popping up on my feed of other autistic people talking about their autistic experience and what it’s like for them. I remember feeling seen and like I wasn’t alone.

From there I took a recommended online test which confirmed for the most part.

What effect did diagnosis have?

I’m still in the early stage of realization. I very much have the thoughts of “am I faking this?”

I feel mentally, emotionally , and physically exhausted.

I feel worried that I will never be able to fully unmask because I’m a little older. I probably just need more time.

Do you think getting diagnosed sooner would have had an impact?

I honestly am not sure.

Do you think being diagnosed in childhood was overall beneficial or did it have negative consequences?

N/A

-I was not, but I have a thought that it leads to many autistic people forced into ABA.

Do you tell people you’re autistic?

I  tell them if I feel safe to do so.

There are times that I struggle with the “you’re faking it” thoughts. And there are people who’s viewpoints make me feel unsafe to share that information.

Do you feel more confident expressing yourself/advocating for yourself since diagnosis?

Since self diagnosis I have been allowing myself accommodations to help be more comfortable. Headphones in public have been a big one and such a help.

At home I have been more open with my husband when I feel overstimulated and I’m beginning to be more open with stimming.

Whilst waiting to be assessed did you feel like you might be wrong/crazy for thinking you might be on the spectrum? Do you still think like this?

Yes and yes

How has going undiagnosed affected you?

As I said in a previous answer, I have felt like I don’t fit and like I’m out of place.

I have struggled with ‘depression and anxiety’, which now I know was stimming from being autistic and being in major burnout. Masking has been and still is exhausting.

Do you have any other mental health diagnosis?

OCD

Are you medicated/ever been medicated? Did you have positive/negative experience of this?

I am not

Have you ever had positive/negative experiences of mental health support?

In my experience with mental health support, I feel like there was no progress made and I feel I wasn’t understood.

Looking back in childhood, what were the signs?

There were times I eloped.

Listening or watching the same thing over and over.

Wanting the same food.

Uncomfortable with loud noises.

Uncomfortable around people.

Not wanting to be touched.

Wanting a lot of pressure on my body.

Lots of meltdowns.

Having a difficult time with change.

Always wanting to know what’s going to happen and what the plan was.

Are your family understanding about autism/your diagnosis? Do you feel understood/supported?

Different family members can be understanding. Overall I don’t feel safe, understood or supported.

The mindset they have is mainly “vaccines cause autism/Tylenol causes autism”. It’s exhausting.

Do you live with family & do you think you will ever live independently and leave the family home?

I have a family of my own.

Do you have sensory issues? 

Certain noises, mainly loud noises.

Crowds, places with lots of people.

Being in public.

Feeling wet on my body when it’s not appropriate. -if I’m not in the bath/shower/swimming I do not want to feel any wet on my body.

Being wet with clothes on for any reason.

Microfiber anything.

Being touched -unless otherwise stated.

Being perceived

Do you stim?

Tap my foot -public

Shake my leg -public

Tap my fingers together -public

Flap my hands -hide it

Listen to certain songs/noises over and over -hide it

Move my body when eating -public

Run my fingers over buttons on my phone or remote -public

Do you have special interests/passions/hobbies? 

I don’t

How do you think others perceive you and why?

I don’t know. I don’t like to be perceived, I feel very uncomfortable.

What are the Positive and Negative experiences of masking?

It keeps me safe.

Are you cis/hetero/LGBTQIA+ or Other? 

Bisexual

Thank you Anonymous for your voice! 🙂

Each day there will be a new interview published here so stay tuned for another autistic voice tomorrow…

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