Autistic Interviews #10 Erin

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 # :


Name: Erin
Age: 35
Sex: Female
Nationality: UK
Diagnosis: Diagnosed autistic at 34

Why is diagnosis important to you?
I was misdiagnosed with a multitude of mental illnesses, including schizophrenia. All of that was wiped from my medical record after an intensive psychoeducational assessment. I am 2E, Autistic, ADHD, along with PTSD and the accompanying anxiety and depression. I have been able to come off the psychotropic medications which have damaged me physically (possibly permanently) and start healing. I was always eligible for some disability supports as a schizophrenic, but now I have the correct diagnosis I have access to the supports that will actually help me. These accommodations mean I can live much more independently.

Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other? How do these terms makes you feel?
Developmental disorder, although I think there is a strong case for it being a neurological disorder. Having experienced severe autistic burnout I understand the connection between Autism and the nervous system in a very personal way. These terms don’t make me feel anything. I like accuracy and as long as they are accurate I don’t have feelings about them.

How did you end up getting diagnosed autistic?
I  had to put myself on a waitlist to see a Dr of Neuropsychology.

When and how did you realise you are autistic?
I stopped drinking alcohol. A lot of my mental health symptoms improved as a result, but there was still something wrong. Nothing made sense. I stopped taking my antipsychotics and nothing happened except feeling much better physically. I couldn’t socialize properly. I couldn’t make friends. I didn’t understand anything. I was thrown right back into how my life was before I started using substances to cope. I had considered autism maybe 8 years prior but didn’t pursue diagnosis because of the cost. I started looking into it again and realized that I needed to be assessed

For late diagnosed people, what effect did diagnosis have?
Relief. I finally understand myself and create a life where I am supported

Do you think getting diagnosed sooner would have had an impact?
Yes. With access to the accommodations I need I probably would have graduated university, maybe been able to hold down a job. As it stands I am undereducated and have not been employed for the better part of a decade.

Do you tell people you’re autistic?
It depends. Usually yes.

Do you feel more confident expressing yourself/advocating for yourself since diagnosis?
Yes. I am disabled and I need help sometimes. I am not ashamed of this.

Whilst waiting to be assessed did you feel like you might be wrong/crazy for thinking you might be on the spectrum?
Not really. It made too much sense. I didn’t really care about the outcome of the assessment. I care about accuracy above all and if it wasn’t autism they would have found the real issue, or at least been able to point me in the right direction. I just wanted clarity either way.

How has going undiagnosed affected you?
My mental health has been awful. I spent my adolescence and a large portion of my adulthood in and out of mental health services including lots of hospitalizations. It was extremely traumatic for myself and my husband who has PTSD after everything that happened. It was a living nightmare. I believed that I had a very low IQ, was gaslight into thinking I was delusional, learned that I couldn’t trust myself or my experiences. So much was expected of me that I couldn’t live up to. I was exhausted and hated myself. I was never good enough. I drove myself into the ground just trying to keep up with others.

Are you medicated/ever been medicated?
I have been heavily overmedicated, to disastrous effect. I have severe metabolic damage that may be permanent, and spent 6 months withdrawing from benzodiazepines. I experienced severe side effects from almost every medication they put me on – the metabolic damage side effect was actually one of the mildest I experienced which was why I was kept on that medication. All it did was sedate me and make me ill.

Have you ever had positive/negative experiences of mental health support?
When I got diagnosed I sought a therapist who works specifically with neurodivergent people. He has ADHD himself. It was a fantastic choice and after decades of therapy I am finally getting something out of it.

Every other experience – doctors, nurses, therapists – has been unhelpful at best, and traumatic at worst.

Looking back in childhood, what were the signs?
I  didn’t play, I organized
I had meltdowns
Banged my head against the wall
Highly sensory and sensitive
Very poor sleep
Poor compliance with demands
Generally “troubled”
Stimming, and being spanked for it
Hyperlexic
Autodidact
Couldn’t make friends with other kids despite my best efforts
Felt like an alien

In what ways did you feel similar/different to others in childhood/adulthood?
People just seemed to know what to do in any given situation. I had (have) to analyse things and try to consciously understand what is happening around me. I have rules I have to follow and when things happen outside of what I expect my brain stutters and it takes me time to adjust. It’s cliche, but it really is that feeling of “everyone got the How To Human Manual and I didn’t”. I just don’t see the world like others seem to.

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

If you could go back in time and tell child you anything, what would it be?
It’s going to take a while but one day everything will make sense and you WILL be OK.

Are your family understanding about autism/your diagnosis?
I don’t have much contact with my family. My husband has been wonderful.

Do you live with family & do you think you will ever live independently and leave the family home?
I live with my husband who also kind of functions as a support worker. I am now eligible for an actual professional support worker to help me out thanks to diagnosis. I would not be able to live completely alone with no support.

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

Do you have sensory issues?
All of my senses are messed up. I have very heightened senses of sound and smell, particularly. I am easily overwhelmed by both. I have issues with interoception and do not experience pain as one might expect. I have broken bones and not noticed, but if someone brushes against me it is very painful.

Do you stim?
I don’t even realize I’m doing it so hiding it isn’t much of an option. It makes me feel normal.

Do you have special interests/passions/hobbies?
Yes, a couple.
Stargate SG1
Doppler radar
Civil defence sirens
Dogs

I don’t really know how to explain why I love them. They make my head tingle in just the right way. I get electric shock sensations down my spine. It’s just pure joy.

How do you think others perceive you and why?
I have been told I am cold, arrogant, aloof, and have “better than you” vibes.

I imagine this is because I do not initiate conversations with others and tend to be blunt and straightforward when people do talk to me. I don’t mean to be rude and I certainly don’t feel this impression accurately represents my personality.

If you could change/improve something about yourself what would it be and why?
I wish I was more laid back.

Do you feel understood?
Not at all. People think I am what I am not. I don’t know what would help.

What would you like to say to neurotypicals?
Im not rude, I just don’t understand the social games you play. I don’t get the hierarchies, I don’t know subtext, I can’t tell when you’re lying. I’m really doing my best to connect with you.

What would you like to say to other autistics?
Find each other

Do you mask/camouflage & how does this affect you?
Yes, but it’s not really conscious. Since learning about it I have been able to stop sometimes. Sometimes it’s useful as hell. I care less and less about trying to mask as I get older. Masking doesn’t make me any less autistic, it just puts everyone on edge because it’s a kind of lying. People can still tell there is something different about me. I’m just trying to embrace that now and be openly weird because that’s who I am. But certain situations flow more smoothly with masking and that’s fine by me.

What are the Positive and Negative experiences of masking?
Positive – I am not to be messed with when masking. I am alert, I am sharp, and I will lawyer the shit out of you. I will not be taken advantage of. I am waiting for you to fuck up and I will pounce on you. Very useful when dealing with the medical system, negotiating contracts, hiring people, making large purchases… Any situation where I might get steamrolled.

Negative – social consequences. There are situations where the mask is a God send, but normal social experiences are made worse by masking in my experience. I prefer to just be as I am, now. I don’t need to fit in. I don’t care what people think. I have made it this far on my own and if I am myself I’m much more likely to find my people. Masking pushed people away.

What is your biggest personal challenge you’re currently working on?
Communication is a big one. Also identity stuff. I’m not sure who I am and I am also going through some major life changes. Just trying to be more comfortable with change.

What type of support do you feel you would benefit from?
If I do decide to go back to school I will need accommodations. I need someone to help me around the house, and will even more so when my baby is born. I need reminders to do things like eat and use the bathroom and brush my teeth. I really benefit from regular therapy with an ND informed/affirming therapist. I need help with making a getting to appointments and remembering things.

Are you in therapy/had therapy in the past?
Therapy was always either useless or actively made things worse until I found a ND informed/affirming specialist.

Are you cis/hetero/LGBTQIA+ or Other? (Do you like/dislike these terms?)
I’m a straight woman. I don’t have feelings about any of the terms except “cis” which is a total head scratcher. It doesn’t really work as a prefix in the context in which it is used. It’s just not sensible.

Do you think labels are helpful or not? (labels such as Autistic, LGBTQIA+, Disability, Woman, Man etc)
Overall, yes, for the sake of accuracy in definition. The problem is when language changes. The point of a label is ease of identification. If the definitions of labels (or words in general) change we’re left with a lot of miscommunication. Which defies the point. Labels that are nebulous and hard to define, or that don’t have agreed upon definitions in the first place, are much more harmful than helpful

Do you struggle with identity issues?
Only as much as I’m not sure which box I’m supposed to fit into. To which stereotype do I most conform? I have no idea and it changes on any given day. I am just as intelligent as I am completely clueless. I am a weird nerdy type with very niche interests but I also like to drink a glass of wine and watch trash TV. I am acerbic, sharp tongued, and quick witted, until I am non-verbal. Nothing makes sense with the spiky profile. It’s hard to define myself. People feel caught off guard by me because I am so contradictory and I am perceived as unreliable and unstable.

What does gender & gender expression mean to you?
Nothing. I don’t believe in gender. There are 2 sexes and everything else is just your personality.

Do you think autism is important to address when exploring gender identity issues?
Yes. There seems to be a correlation (especially in girls) between gender identity disturbances and autism. This should not be overlooked, especially when medical transition treatments are becoming so easy to procure without mental health assessment. I do not support “affirmation only” models of gender dysphoria treatment and believe that the connection with autism needs more research and understanding.

Have you any insights/views on gender nonconformity, gender expression, autism expression and the relation between them?
I  think as autistic people we tend to march to the beat of our own drums. We don’t follow rules that don’t make sense. A lot of traditional ideas regarding gender are pretty meaningless, and therefore pointless. It makes sense to me that autistic people are more likely to ignore these “rules”.

Are you gender nonconforming? (What does being gender nonconforming mean to you?) Do you think anyone can be gender nonconforming?
I think the entire idea of gender nonconforming is nonsensical. Nobody on Earth adheres to traditional gender stereotypes 100% of the time. It just doesn’t make sense.

Are you employed? Do you struggle to get/keep a job?
I am not employed. My longest period of employment was less than a year. My problems are mostly social misunderstandings and communication issues.

What support do you think you/autistic people need to find/keep employment?
Help determining the accommodations that will support the individual, and then implementing them without fuss.

Do you struggle or excel in school/employment?
Struggle

What areas of your life do you wish you could improve?
I wish I knew how to make friends.

What challenges do you face when trying to connect with others? How do you think this can be helped? What can you do and what can others do?
I  have no idea at this point. I am genuinely baffled by the whole thing

Are you Introvert/Extrovert?
Introvert (until you get me talking about a topic I know well).

How do you feel about being autistic?
If I could change it I would.

Do you ever wish you were neurotypical and why?
Yes. I just want to fit in and disappear.

Do you have autistic/neurotypical friends?
I don’t have any friends at all

Do you have a social circle/one friend/group of friends/no friends?
All I have is my husband. I generally prefer to be alone so I don’t spend a lot of time being upset about it. But there are times I notice the depth of my isolation and wish for connection.

If 60% of the population was autistic, what positives and negatives do you think there would be?
It would be positive for me. I communicate much more effectively with other autistics. I might make some friends. The world would be a much friendlier place.

Thinking about autism research and studies, what questions do you think the professionals should be asking?
I’d  like more research on the nervous system connection.

Are you interested in/do you consider yourself Feminist/Environmentalist/Socialist/Gender Critical/Trans Ally/Humanist etc
Feminist – Depends upon how you define it. North American myopic, capitalist, narcissism disguised as empowerment? No. Not that. Supportive of the independence and rights of women and girls? Yes. I am also European (living in North America) and we tend to have more cultural awareness than Americans due to our close proximity to other countries and cultures. Americans are extremely selfish and short sighted in their feminism. Very colonialist.

Environmentalist – As far as is sensible. We only have one planet and we should care for it, but we should be strategic so as not to make outcomes worse for the most impoverished.

Socialist – No, I believe in distributism.

Gender critical – Yes. Unfortunately this has become synonymous with “anti-trans” and I don’t feel that way. I just think things in this space are moving weirdly and have become extreme and frightening. Something is going wrong with the conversation and it needs to be addressed.

Trans ally – This tends to mean affirming no matter what. So no. Never will be. But I do desire the happiness, health, and well-being of trans identified people.

Humanist – yes.

Political stance?
Depends on the issue


Do you support self diagnosis?
NO! You can not declare yourself disabled. You must be assessed by the appropriate professional. You can be suspicious, research, have questions, feel seen, but you can’t confirm it for yourself.

I am at the point now that it doesn’t take long for me to figure out who is diagnosed, who is undiagnosed, and who is self diagnosed. I have started joining online groups that actively exclude self diagnosed “autistics” and they are so much better. If you find that you are struggling even in “autistic” spaces see how inclusive they are of the self diagnosed because chances are that you’re just dealing with the same NT nonsense as you would anywhere else. Connecting with others who are like me and having positive interactions have become a daily occurrence since moving to “diagnosed only” spaces.

Thank you Erin 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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Next interview :

https://auntieautism.wordpress.com/2024/03/20/autistic-interviews-11-kamila/