Autistic Interviews #17 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 #17 Anonymous:

Name: Anonymous

Age: 38

Sex: Female

Nationality: British 

Diagnosis: Diagnosed autistic age 7

Why is diagnosis important to you?

It’s neither important nor unimportant, it just is. I can’t really remember not being diagnosed autistic though

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

It is a disability, by definition – diagnoses requires impairments, so it’s a disability.

I don’t really think of it as neurological, like epilepsy or something. I’d think you’d be able to test for physiological/anatomical differences if it was. Although I guess maybe those differences are just in a place-structure that is as yet unclassified.

I don’t think it’s a mental health condition, because that implies it’s acquired, and/or something you could get better from.

I don’t really feel much, except annoyed when people say it’s not a disability. Partially because i am actually disabled by it, but probably mostly because they are just definitively wrong.

Is anyone else in the family autistic? 

My son is. He was diagnosed at 5 years old. It was fairly obvious to everyone.

How did you end up getting diagnosed autistic?

My parents, school, GP I think. It was a long time ago. I had a lot of issues as a child.

When and how did you realise you are autistic? 

I did not ever experience this. I was told I was when I was 7. I don’t think it meant a lot to me at that age.

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

It meant I could have therapies which improved my quality of life. There was a lot of negative thoughts about autistic people back then, but honestly I was struggling so much that I wouldn’t have survived without the support I was given due to my diagnosis.

Do you tell people you’re autistic? 

Not often. If it comes up in conversation, I don’t lie, but I don’t usually offer it up. I always tell HR when I start a job so that I have some kind of legal protection.

Tbh I’m kind of embarrassed by it these days. 10-15 years ago I was actually ok with it. But all the social media about it just seems to give the wrong impression about it, I often don’t recognise what it’s going on about. So I’d rather not be associated with all of that.

Are you medicated/ever been medicated? 

Not for autism. I am for epilepsy. Obviously that’s great because it keeps me alive and better functioning.

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

Generally positive with private providers, generally negative with NHS, especially in the last 20 years. I’ve spent a lot of time in institutions and/or psych wards over the years.

Looking back in childhood, what were the signs?

I believe they said it was my complete indifference to other children, lack of ability (or desire) to converse with people, intense routines and severe reactions to my environment, along with severe self-injurious behaviours.

In what ways did you feel similar/different to others in childhood/adulthood?

I don’t really know how I feel, nevermind other people!

What was your childhood and teenage years like for you being autistic?

A lot of therapies. Fair amount of bullying. Frustrating because often I just wanted to learn, and other children got in the way of that. Very few peers held any interest to me, as I had zero interest in the things they liked and vice versa.

Are your family understanding about autism/your diagnosis? 

My family have supported me unwaveringly since childhood.

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

I am married with my own family now. Considering that my parents were told I’d never live independently, it’s an achievement. I do still have a lot of support from my parents and sibling. And my husband is incredibly understanding and supportive.

Do you feel independent in life or do you rely on family or social workers etc for support?

I need family support

Do you have sensory issues? 

Yes, the wrong feeling makes me want to tear my skin off. Loud noises make me want to run away and hide. Smells also. It is a constant struggle to suppress the urge.

Do you stim?

Subconsciously. I had a lot of intense therapy as a child to direct injurious stims into non-injurious stims. Since it’s not something I consciously do, and I’m not in intense therapy, there’s not a lot I can do about it. So it is what it is.

How do you think others perceive you and why?

I have no idea

If you could change/improve something about yourself what would it be and why?

I am lazy at times, and wish I did more

Do you feel understood?

I can’t work out what this really means

Do you mask/camouflage & how does this affect you?

I have never understood what masking is

Are you in therapy/had therapy in the past? 

I have been in some form of therapy for nearly 30 years. OT, SALT, ABA, Ed psych, psych etc etc. Overall, it’s saved my life and even more given me the ability to live a semi-independent life, so that’s good.

Are you cis/hetero/LGBTQIA+ or Other? (Do you like/dislike these terms?)

I’m not really into all these terms. I’m heterosexual though.

Do you think labels are helpful or not? (labels such as Autistic, LGBTQIA+, Disability, Woman, Man etc) 

In certain situations, for example for allowing restrictions to certain spaces. I think some people obsess over labels or place too great an importance on them though. Better to recognise that everybody is diffferent rather than trying to fit into neat boxes.

Do you struggle with identity issues? 

No. I am what I am. Same as anyone else. You can’t change that. I am a consciousness inside a brain inside a body. This is how I was formed, it’s what I’ve got, so I don’t understand why there would be any angonising over what I am, or what I would even agonise about. I am objectively me.

What does gender & gender expression mean to you?

Nothing, I don’t really understand its relevance to anything. If anything, it seems regressive and restrictive.

People are both aided and limited by their biology, and that should be recognised because its objective truth. Anything that society puts on top of that just seems unnecessary; I don’t really understand the purpose.

Do you think autism is important to address when exploring gender identity issues? 

Possibly, as I guess autistic people can fixate on things? I don’t really understand gender identity issues (as in, I can’t fathom how anybody has them; the idea doesn’t make any sense to me)

How important is autism identity/gender identity to you?

Neither are important to me

What do you think/understand about the overlap/link between autism and gender diversity?

I’ve heard there’s a large overlap between autistic people and gender diversity, but I don’t understand how because I just see the idea of gender as illogical. Perhaps other autistic people see it as wholly logical in the same manner – but I can’t personally understand how.

Are you gender nonconforming? (What does being gender nonconforming mean to you?) Do you think anyone can be gender nonconforming?

I guess I just don’t think the idea of a separate gender is really a thing, and I don’t think it should be given any level of importance on either a personal or societal level. It’s just really weird that this extra layer has been added to people.

Are you employed? Do you struggle to get/keep a job?

Yes. I am a scientist. I am good at my job because it suits my skills.

Have you had positive/negative experiences in school/employment due to autism/acceptance/ableism/misunderstandings?

My workplace let me work from home for several months continuously when they put a mask mandate in place during Covid, as I could not cope with masks. They are very good.

Does your employer/colleagues know you are autistic? 

My HR dept and manager do, because that gives me more legal protections.

Do you have a social circle/one friend/group of friends/no friends? 

Not really. I have never been overly concerned with having friends. I went through a phase of thinking I should have some, but it was very stressful and I realised I’d rather not.

If 60% of the population was autistic, what positives and negatives do you think there would be?

I  think what classes as autistic these days is so broad, that I think this question could have many answers. Probably it just wouldn’t make much difference to now.

Thinking about autism research and studies, what questions do you think the professionals should be asking? 

I would like to see more research into what autism is on a structural level. Possibly tied into the prevalence of common co-morbidities such as epilepsy, hypermobility, dyspraxia etc.

Are you interested in/do you consider yourself Feminist/Environmentalist/Socialist/Gender Critical/Trans Ally/Humanist etc

Old-school feminist I guess

Political stance?

No idea these days. I don’t really seem to fit anywhere. I used to be more left, nowadays I think I’m more right.

Thank you Anonymous for your voice! 🙂

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

Next interview in the series:

https://auntieautism.wordpress.com/2024/03/27/autistic-interviews-18-sydney/

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