Autistic Interviews #11 Kamila

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 #11 Kamila:

Name: Kamila

Age: 41

Sex: Female

Gender: Female

Nationality: United States

Diagnosis: Diagnoses autistic at age 36

If diagnosed autistic, what age were you at diagnosis?

36  but didn’t believe it until I was 41 and another person diagnosed me

Why is diagnosis important to you?

It’s  important if one needs reasonable accommodations at work and it helps understand all of the misdiagnoses and the reasons for the suffering

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

I don’t like to be called an autistic woman because that’s not who I am and I am much more. I am a woman with autism and not limited to the stereotypes that come with it.

How did you end up getting diagnosed autistic? 

Therapists, then a therapist who was on the spectrum herself. I joined a support group for women on the spectrum and it helped a lot with acceptance. The women in my group and myself are alike even though autism is a spectrum. Yet we all have the same struggles.

When and how did you realise you are autistic?

I didn’t believe it until I was in a group with other women…several months ago but was diagnosed by my therapist about 4 years ago. She didn’t tell me until recently because I was angry at the previous therapist who diagnosed me and made therapy all about my diagnosis.

For late diagnosed people, what effect did diagnosis have?

I was very upset and had to really process the information. I found a virtual support group on the other side of the country and gave a work note to miss an hour that day to HR. HR blasted my diagnosis to everyone then moved me from social services to data entry. They made fun of me and had people walk by me wearing big headphones. It was very traumatic. When I try to ask for accommodations people laugh at me and don’t believe me. But it makes sense the struggle is real. It did help with recognizing that most neurotypicals have a poor memory as I would get frustrated with people who couldn’t remember things from several months ago, several years ago, ect. I now realize that my memory and attention to detail are strengths. It also explained why I have much difficulty with dating, small talk. I have studied people all my life to understand them, now I know why.

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

I think it would have helped with work and recognizing a good work environment and what I need to thrive in a workplace. Also, it would have helped me understand dating better.

Do you tell people you’re autistic? 

Not really, because my experience has been bad so far. Most people are in disbelief or laugh at me.

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

Yes, because I’m tired of people’s crap.

Looking back in childhood, what were the signs?

My memory, rocking at night, staring at colorful objects, loved playing on swings for hours. I did very well in school and was behaved so people didn’t complain until my teen years.

Do you have sensory issues?

Yes… a lot but I didn’t realize they were sensory issues. I am sensitive to tone and I quickly pick up on displeasure in others from their tone. I am sensitive to light and always wear sunglasses. I hate pictures because I always need to take many as I close my eyes when I hear the click and see the light. I am sensitive to touch and wear specific clothing for comfort. I have cold sensitivity so that effects my clothing and temp in the house. I take baths because the water of shower is too harsh and I sneeze a lot. I don’t like a constant flow of water on my face. I can feel other people’s emotions and the vibrations. Anger physically hurts and I will back away. I don’t like people in my personal space and prefer a 6 foot diameter difference which I implemented about a decade before COVID-19. I am sensitive to shifts in energy. However, most of the time it has protected me from dangerous situations ie. car accidents, physical harm.

Do you stim? And do you stim in public or hide it?

I hate the word stim because people are not trying to stimulate they are trying to reduce excess energy.

Do you have special interests/passions/hobbies? 

Yes. I like to research answers to questions I have. I will do this for a long time when I am not working. I’m also interested in learning about other cultures. My special interests I guess is people. I work in social services.

How do you think others perceive you and why?

I honestly don’t care how they perceive me because everyone has an opinion which is usually some kind of faulty projection.

What would you like to say to other autistics?

I don’t call people “autistics” just like I don’t call others “nonautistics.”

What is your biggest personal challenge you’re currently working on?

I’m trying to find a new job, but it’s hard to interview because I’m traumatized from my current work environment.

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

I excel at my job not work relationships. I keep to myself and in order to advance in the company one must kiss ass and it’s based on connections

Does your employer/colleagues know you are autistic? 

I recently told them and I regret it a 100%. They harassed me and urinated in my work vehicle before I had to drive it.

Do you struggle or excel in school/employment?

I remember being in high school looking at the textbook before a test and copying the answers from the pictures in my head. I now realized most people can’t do that.

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?

It gets harder as I get older. Dating is very hard because people are not upfront about their intentions.

If you could have learnt one lesson in life or childhood, what would it be and why?

Not everyone is your friend and has the best intentions for you

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

I have few friends and it’s been difficult as I’ve gotten older because it’s easier to get along with men, however, now that I’m older most men are married and their wives don’t want their husbands being friends with a female. I’m usual single and get excluded from a lot of activities. It’s hard. People take socializing for granted. Small talk is very hard. Sometimes, I get nervous and struggle to find the right words then I say the wrong word and people get mad at me. Women are very unforgiving even if I apologize and explain that wasn’t what I meant to say.

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

How can we provide medical care to those with sensory sensitivies as opposed to taking over someone’s body?

What areas of autism studies/research would you like to see more of in the future? 

I would like neurotypicals ie doctors, therapists, teachers to complete a study by talking to women on the spectrum and see if they are able to identify it because most people don’t have a clue and believe there is a “look” to autism.

Thank you Kamila 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/2024/03/21/autistic-interviews-12/