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 for 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 #9 Jessica F:
Name: Jessica F
Age: 50
Sex: Female
Gender: Female
Nationality: Canadian
Diagnosis: Diagnosed autistic age 48
Why is diagnosis important to you?
Basically, for peace of mind and so that my son can seek a diagnosis, if and when he’s ready. (He’s undiagnosed Autistic and isn’t seeking a dx at the moment
Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other? How do these terms make you feel?
Disability/neurological disorder. I’m not sure how it makes me feel yet.
Have you ever been misdiagnosed?
I’ve never been Dx or misdiagnosed before, probably because I was high masking, big time, without really knowing it.
Oh wait, I was given anxiety meds when my dad died, I think I went into severe burnout and looking back, it was probably Autistic burnout because everything came to a breaking point. (Very long story).
Is anyone else in the family autistic? How did they all find out?
Yes. My (male, younger)cousin was dx at a very early age, probably 2 or 3.
I’m guessing my dad was, looking back, but we’ll never know. He died before I knew I was Autistic but the signs were there.
My son is ( he is exactly like me-has all the same traits, but has more noticeable stims) my niece is also in the process of being dx because she is also similar to me. (My sister is ADHD)
How did you end up getting diagnosed autistic?
Self referral/GP
When and how did you realise you are autistic?
About a year before I sought my diagnosis(during Covid). I work at a day program for adults with disabilities, and we have a lot of Autistic adults that come to our program. There were some glaring similarities and it finally just all clicked into place. My mask was starting to slip, (the one I didn’t know about) and so I started researching when my sister pointed out some of the things I do that seemed Autistic.
What effect did diagnosis have?
A massive weight lifted off my shoulders, I’ve slowly began to unmask, I get a bit sad sometimes that it was missed as a child because I got called “lazy, sensitive, young, dumb, princess(because of sensitivities)” as well as just a feeling of failure as a young person, I still don’t feel like a proper adult. But now I know I’m not dumb, I actually have dyscalculia that was undiagnosed my whole life ( I just read an old report card that said I did subtraction upside down!!)
I’m gentler on myself and I’m helping my family understand me better
Do you think getting diagnosed sooner would have had an impact?
I think I would have had some accommodations in school, at least
Do you tell people you’re autistic?
Yes. To educate.
Because, I get, “you don’t look Autistic” a lot.
Do you feel more confident expressing yourself/advocating for yourself since diagnosis?
Yes.
Whilst waiting to be assessed did you feel like you might be wrong/crazy for thinking you might be on the spectrum?
Yes I did and on the most part, no I don’t still think that….well…occasionally I do get a bit of imposters syndrome but not as much as I used to.
Are you medicated/ever been medicated?
No, not currently. As mentioned above, I was given meds for anxiety in 2004 when my dad passed. I went off 18 months later when I thought I could cope better. I think it was a fine experience. There was a stigma back then about anxiety meds that doesn’t seem to be there as much now but I had a few coworkers reveal they were also on meds so not to feel bad, and that really helped.
Looking back in childhood, what were the signs?
Pfffttt…lots! Stims(mostly unhealthy ones that I remember, I don’t remember joyful ones really? Maybe dancing and singing and echolalia?), meltdowns in the form of crying, “lining up my toys” but in a very different way that people wouldn’t notice. (My Lego was put in a rectangle by colour and brick length- never varied when I played with lego) I lined my Barbie’s up and organised their clothing…that sort of thing. Oh and I am hyperlexic.
In what ways did you feel similar/different to others in childhood/adulthood?
I always felt “babyish” or that I was behind my peers in wanting to play with Barbie’s/ stuffed animals/toys. I was always naive when I was younger, oblivious to social cues most of the time.
I don’t think I felt similar to any of my friends when I was younger…but in my 20’s, looking back, it looks like I’ve gravitated to a more neurodivergent friend base. Everyone I work with is neurodivergent whether they are dx or not.
A lot of my friends, I’ve discovered, are neurodivergent- that I’ve met in adulthood. I just never realised before. There are certain ppl I can be my total self with, others I’m still a bit reserved.
If you could go back in time and tell child you anything, what would it be?
You. Are. NOT. Dumb!!!! You are enough. Don’t waste your time on people that are mean to you. Trust your gut/instincts. Always. Don’t let others railroad you.
Is your family understanding about autism/your diagnosis?
On the most part, I think so. I get the most support from my sister.
Do you live with family & do you think you will ever live independently and leave the family home
I am married and have children. I have lived independently
Do you have sensory issues?
Heck yeah. I am sensitive to light, sound, smells…lots of scents give me a migraine- mostly floral scents included in perfumes and cleaning products. Cigarette smells are the worst.
I don’t like microfibre, underwear tags bother me, I toe walk when I’m barefoot, the list goes on.
Also sensitive to food texture and taste, etc.
Do you stim?
Yes, I do stim.
I never noticed I did it until I discovered I was Autistic. I’m stimming more openly now but a lot of my stims were not noticeable to others.
I do t rex arms but hid it when u was young because I was made fun of(totally forgot about that until I started doing it again when I was dx and unmasking)
Twirl my hair, strings, wires
Used to Chew on straws/pen caps
I rock but never really noticed (do it more when I’m stressed)
I’m not really sure how it makes me feel yet. I don’t mind it- I notice that I do it now…
Do you have special interests/passions/hobbies?
Yes.
Collecting beach glass
Doctor who
The UK
Antiques/vintage everything
How do you think others perceive you and why?
No idea.
If you could change/improve something about yourself what would it be and why?
My executive dysfunction. I’d like to have a cleaner house.
Do you feel understood?
I think so, on the most part.
What would you like to say to neurotypicals?
Have more understanding. When someone tries to gently correct you, listen and learn.
Give us more accommodations.
What would you like to say to other autistics?
Keep being you. Don’t be afraid to be yourself. Revel in your joy.
Do you mask/camouflage & how does this affect you?
I have in the past- I didn’t realise how exhausting it was.
What are the Positive and Negative experiences of masking
I can’t really answer that right now.
I guess positives were so I wasn’t perceived as weird? But weird is cool soooo….
What is your biggest personal challenge you’re currently working on?
Self care, executive function.
What type of support do you feel you would benefit from?
That’s a tough one to answer right now. I’m 50 so workplace accommodations are what I would benefit from the most,at present.
Are you cis/hetero/LGBTQIA+ or Other?
Cis, I guess?
Do you think labels are helpful or not? (labels such as Autistic, LGBTQIA+, Disability, Woman, Man etc)
I think so?
Do you struggle with identity issues?
Imposter syndrome for a bit.
Are you employed? Do you struggle to get/keep a job?
Yes I have a job. I’ve noticed I don’t stay in the same job for more than 5 years at a time. Present job excepted. This one seems to be sticking. Yay!
Does your employer/colleagues know you are autistic?
Yes. Because I feel comfortable telling them as we are a day program for adults with disabilities
Do you mask in education/employment?
I did unwittingly.
Do you have accommodations made for your autism in education/workplace?
Yes.
Do you struggle or excel in school/employment?
I did struggle in school.
Are you Introvert/Extrovert?
I’m an introverted extrovert
How do you feel about being autistic?
Happy and proud.
Do you ever wish you were neurotypical?
No
Do you have a social circle/one friend/group of friends/no friends?
I have several social circles. Lots of positives I think.
If 60% of the population was autistic, what positives and negatives do you think there would be?
Less judgment. More accommodations for us.
Thinking about autism research and studies, what questions do you think the professionals should be asking?
Oh gosh, I’m not sure I can answer that right now but I do wish they were less obtuse questions! They also need spaces for us to elaborate.
What areas of autism studies/research would you like to see more of in the future? (For example, studies on the effects of masking/rates of unemployment/support for adults/late diagnosed/support in schools/co-morbid mental health links/gender overlap)
All of the above sound good.
Are you interested in/do you consider yourself Feminist/Environmentalist/Socialist/Gender Critical/Trans Ally/Humanist etc
I am an ally, feminist, enviro, socialist, I guess.
Defo an ally for all.
Political stance?
I’m not really sure? I’m Canadian so we don’t view politics quite the same..or maybe it’s just me.
I’m NOT a Trumper soooo…there’s that. 😝
Anything else to say?
I don’t have the spoons right now to do this.
Thank you Jessica F 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/2024/03/19/541/
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