Autistic Interviews #12 J
Queer activism demands external recognition for internal delusions and wants to erase biological distinctions between the sexes. I’m polite – I use people’s pronouns – but I do think it’s delusional
Welcome to 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!
Name: J
Age: 37
Sex: Female
Gender: Female
Nationality: American
Diagnosis: Diagnosed autistic age 35
Why is diagnosis important to you?
Because I trust the authority of trained medical professionals over the intuitions of any given individual, including myself.
Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other? How do these terms makes you feel?
Yes, particularly in its more severe manifestations. It’s a debilitating, lifelong condition that makes life difficult for both the autistic individual and his/her family burdened with caring for him/her. In more mild forms it’s more of an anti-social quirk, but having any kind of marker of difference makes life more challenging.
I feel neutral about these terms. They describe reality.
Have you been diagnosed autistic but you don’t think it’s the right diagnosis? Or have you been misdiagnosed with other mental health conditions in the past that were incorrect?
I think it was a mistake to collapse Asperger Syndrome onto Autistic Spectrum Disorder. Yes, I have ASD, but the old term of Aspergers describes me much more precisely and I prefer it. Before Aspergers I was diagnosed with Major Depressive Disorder.
Is anyone else in the family autistic?
I suspect mild autism affects a large proportion of the paternal side of my family, but I’m the only one with a diagnosis.
How did you end up getting diagnosed autistic?
Self-referral. I was wondering why I was in my 30s, seemingly intelligent and highly educated, yet struggling so much to hold down a job, so I sought out a differential diagnosis between autism and borderline personality disorder.
When and how did you realise you are autistic?
About suspicion…I think when I first heard about “Asperger Syndrome” when I was about 14. I was like, “Omg, that’s me.” But I immediately told a cousin who had grown up with a young man with a more severe form of autism and she was like, “You cannot possibly be autistic; I know what autism looks like.”
For late diagnosed people, what effect did diagnosis have?
It gives me a sense of comfort and community; knowing there is an explanation for why I function the way I do.
Do you think getting diagnosed sooner would have had an impact?
I’m not sure – I think about this a lot. On the one hand, I think it would have given me access to more resources I could have benefitted from earlier in development. I have always been naturally smart and good at school, but math was a weakness and I wish someone had intervened earlier to keep me from falling off the cliff in math. But instead they just saw that I was gifted in language and played to my strengths – which was also a blessing. I grew up believing I could do anything I set my mind to and discovered my limitations later…there’s a certain benefit in that. I wish I’d had more guided mentoring in college, for example – I think I would have made some very different decisions about my studies and how I spent my time.
Do you tell people you’re autistic?
Sometimes. New acquaintances often don’t believe me unless they’re accustomed to working with autistic populations and they usually figure it out for themselves. Most of the time I don’t really see a benefit in self-disclosing unless I fudge something socially in some way and need to apologize. Then sometimes I’ll say “…I’m autistic” by way of explanation, but I don’t want to make it seem like it’s an excuse for bad behavior, either.
Do you feel more confident expressing yourself/advocating for yourself since diagnosis?
Not really, no. I’ve always been pretty confident expressing and advocating for myself.
Whilst waiting to be assessed did you feel like you might be wrong/crazy for thinking you might be on the spectrum?
Sometimes. And yeah, sometimes I still doubt the validity of the diagnosis. I have a lot of trauma in my background too, and sometimes untreated trauma can manifest in Asperger-like ways. I think the psychologist who diagnosed me is more familiar with autism than cPTSD and sometimes I wonder if she labeled me with what she knows rather than what’s true.
How has going undiagnosed affected you?
I really struggled socially starting in high school. I felt very isolated; had few meaningful friendships. I turned to academics and that served me well, but I was very mentally unhealthy and didn’t know what to do about it. I thought things would get better in college and they did, a little bit, but I also felt very outcast and alone at a small liberal arts college. I didn’t say goodbye to anyone on campus after graduation – I just packed up my car with my family and left. I have struggled to find and maintain romantic relationships and later I constantly found myself stumbling in professional settings, beginning with internships that didn’t progress to jobs and jobs themselves. I lacked social skills and my motivations seemed out-of-step with my colleagues’ and expectations of my supervisors.
Do you have any other mental health diagnosis?
MDD and cPTSD. My psychologist thinks I show some traits of BPD but do not meet the full diagnostic criteria.
Are you medicated/ever been medicated?
I have tried a few SSRIs but quit because of sexual side effects. I was on Wellbutrin for about 5 years – I eventually quit while going through a crisis when I couldn’t afford the medication anymore. I was so very low and depressed at that point that I didn’t think I could feel any worse with the withdrawal symptoms and, it’s true, I didn’t really notice a period of withdrawal, only that I felt absolutely awful for months after that. I have been off of mood-stabilizing medication for about 7 years and I’m generally doing well.
Have you ever had positive/negative experiences of mental health support?
I’ve been in and out of therapy since I was about 13. Most of that has been mediocre, not particularly positive or negative. I’ve had one excellent counselor and encountered a few poor fits while shopping for the right professional.
Looking back in childhood, what were the signs?
Complete lack of social awareness. Being in one’s own world all of the time. Talking like a “little professor.” Precocious speaker and reader. Extreme emotional reactions to mild sensory stimuli. Discomfort with prolonged eye contact. Clumsiness.
In what ways did you feel similar/different to others in childhood/adulthood?
I grew up in the country and I liked country things – sports, running barefoot, catching critters, wading in creeks, hiding in cornfields, wandering alone or with friends for hours at a time. I was a tomboy and that was celebrated, at least until puberty. It was a good early childhood and in that respect, I felt like I fit in. Differences are that once I started reading, I quickly became engrossed – I was reading at a 7th grade level by first grade and known as the girl who constantly carried a book. Differences really began to become magnified around puberty, though – I felt like I was slow to mature and just not interested in the changing interests of my classmates, particularly cultivating an interest in boys, appearance, fashion. I wanted to play for a few more years. Within a few years I would discover I was sexually attracted to other girls, however, and given the rural setting that was deeply shameful. That has nothing to do with autism, though.
What was your childhood and teenage years like for you being autistic?
Childhood was wonderful – I was largely happy and feral. Adolescence was miserable as I became aware of how much of a misfit I was.
If you could go back in time and tell child you anything, what would it be?
“Pay attention in math class.”
Are your family understanding about autism/your diagnosis?
Some have disputed it, some have politics that don’t allow them to openly dispute someone’s self-declared identity, so I don’t know what they really think. Many don’t know and and still others were referring to me as autistic before I was diagnosed.
Do you live with family & do you think you will ever live independently and leave the family home?
N/A – I live independently.
Do you feel independent in life or do you rely on family or social workers etc for support?
I am pretty independent – hyper-independent in ways that are not always healthy and catch up to me later. My caregivers were not always reliable figures of support and it’s been hard to trust people
Do you have sensory issues?
Fewer now than when I was little and I’m not sure I’m fully aware of them; I’ve sorted some things as a preference rather than a sensitivity. I think I may be a bitter super-taster; I cannot stand bitter foods and drinks. I’m extremely sensitive to the quality of light in an enclosed space; I can feel my own mood react in tandem with the rising and lowering of a set of blinds. I’m cold all the time. Yeah…some quirky things like this, but overall my sensory sensitivities do not tend to control how I live.
Do you stim?
I don’t think so. I bite the insides of my cheek and sometimes the skin on my thumbs for comfort, but I don’t think that counts as a stim.
Do you have special interests/passions/hobbies?
Absolutely. My passion area is multimodal primary language acquisition by children who are deaf or hard-of-hearing. I sign two sign languages and two artificial signing systems, cue fluently and have worked in university research in this area for the past 5 years. In my free time I continue to read and learn about it – I love it. I honestly don’t know why I love it so much, though and I’ve never met another autistic person with this passion.
How do you think others perceive you and why?
Socially awkward. Nerd. Androgynous.
I think they perceive me that way because that’s how I appear.
If you could change/improve something about yourself what would it be and why?
I don’t like my body shape. I’ve been overweight since puberty no matter how much I diet or exercise, carry a lot of weight in my hips and thighs, and have never been conventionally attractive, especially as I masculinized my appearance. I’ve really struggled in the relationship department and I think it might have been easier if I were more attractive.
I would also shift some of my verbal intelligence into the mathematical realm. My biggest regret from college is not studying a STEM subject – I think I would have had a much more stable and high-earning career than I do if I had.
Do you feel understood?
Sometimes. By a few people who really take the time and effort to get to know me and my background. But for the most part, no – I can shift between many different social worlds pretty convincingly but I don’t truly belong in any of them, it feels like.
What would you like to say to neurotypicals?
I’m not sure how to answer this question; I talk to neurotypicals every day.
What would you like to say to other autistics?
Stop being such socially oversensitive snowflakes and making everyone else miserable by policing our speech. You’re not destigmatizing autism or anything else, you’re just giving undesirable characteristics a different name and building resentment among the wider community that then reflects how I’m perceived by the world.
Do you mask/camouflage & how does this affect you?
A little bit; for limited periods of time when I need to get through a certain social situation. But it’s exhausting and not sustainable. For the most part, I stopped masking day-to-day around age 30 and my daily stress-level has gone way down.
What are the Positive and Negative experiences of masking?
Positive: I can blend in for awhile. Negative: It requires a lot of energy and the mask slips; I’ve never been particularly good at it.
What is your biggest personal challenge you’re currently working on?
Sustaining the new romantic relationship I’m in. I really want this one to work.
What type of support do you feel you would benefit from?
More mentorship at work. I’m excellent at my job, have gotten shining performance reviews, but I’ve maxed out what I’ve been able to learn in my current position and from day-to-day I’m so bored. I wish someone would take a cultivated interest in my professional development and mentor me to the next level.
What mental health support do you have/have had in the past? Are you currently seeking mental health support and why?
I’ve been seeing my current psychologist for a little over a year now. She’s alright. She’s particularly helpful in helping me navigate relationship issues.
Are you cis/hetero/LGBTQIA+ or Other? (Do you like/dislike these terms?)
I’m an androgynous cis lesbian. I don’t mind “cis” but I do get annoyed by the increasing ubiquity of words like “queer” or “LGBT(QAII2+..)” that erase the individual identities within the acronym. Trans people have their own issues very different from being same-sex attracted and I wish there were more recognition of the separation between us; the uniqueness of our own individual challenges. Over the past decade or so my lesbian identity has felt pretty erased.
Do you think labels are helpful or not? (labels such as Autistic, LGBTQIA+, Disability, Woman, Man etc)
If they’re accurate and descriptive, yes. Glomming a bunch of letters together does not really reliably tell you anything about any given individual.
Do you struggle with identity issues? (Autism identity/gender/sexuality/imposter syndrome/masking etc) & What type of support do you think would help?
Not anymore. Having grown up in rural Illinois in the 90s and 00s, I struggled for a long time to reconcile my homosexuality with my then-Christian identity. I felt very ashamed and very invisible for many years.
What does gender & gender expression mean to you?
Gender is the internal relationship one has to one’s biological sex. Gender expression is how one externally manifests one’s sense of gender.
Have you received professional assistance about gender identity distress? (Did it include autism support/acknowledgment?)
Mmm, sort of. I had top surgery in Thailand in 2014, not quite sure why I wanted this other than I had always hated having breasts. I questioned for a couple of years whether I might be agender or a similar manifestation – eventually deciding that no, I wasn’t, I was just a woman who hated having breasts. I know consumer-driven medical care is controversial, but I have no regrets about the surgery at all.
If you had gender identity issues in the past, before you knew you were autistic, has anything changed about how you view gender identity now through the lens of autism?
I think I’ve become more conservative/unforgiving over time about gender stuff than I was in my early 20s. Queer activism demands external recognition for internal delusions and wants to erase biological distinctions between the sexes. I’m polite – I use people’s pronouns – but I do think it’s delusional to identify as something other than what one is and not being able to say so is very frustrating to me.
Do you think autism is important to address when exploring gender identity issues? Why/why not?
I don’t know. Radical feminists and their ilk often point to a high degree of comorbidity between autism and male- or non-binary-identifying young women, using this as a reason why they should not be allowed to pursue social or medical transition, but I’m not sure why one necessarily precludes the other. I think consenting adults should be able to do what they wish with their own bodies, healthy or no, up to and including the right to end one’s own life. The question of minors becomes more dicey, though.
How important is autism identity/gender identity to you? Is one more important than the other? Do you think they are linked together or completely separate?
Neither are particularly important. I don’t know whether they’re linked.
What do you think/understand about the overlap/link between autism and gender diversity?
A higher proportion of autistic individuals, particularly women, appear to be gender diverse in some way than neurotypical individuals. We have “male brains,” so that doesn’t necessarily surprise me.
Have you any insights/views on gender nonconformity, gender expression, autism expression and the relation between them?
I think being autistic frees one somewhat from the notice of and attunement to social expectations for gender-conforming appearance and demeanor. I have been slightly masculine my entire life and enjoyed the freedom from men’s sexual attention or expectations.
Are you gender nonconforming? (What does being gender nonconforming mean to you?) Do you think anyone can be gender nonconforming?
Yes, I think so. It means that I embody my sex in ways that are atypical for most members of my sex. Sure, anyone gender-nonconforming can be gender-nonconforming, but for some of us it’s a natural inclination while for others it may be more performative.
Are you employed? Do you struggle to get/keep a job? Do you excel in the workplace? What problems do you encounter?
I’m employed, yes, have struggled in the past to keep a job, yes, but when I’m happy I do excel in the workplace. I usually encounter a mismatch between my personal motivations – to do good in the world, to do my work to excellence, to personally deepen and expand my work-associated knowledge and skill set – and the motivations of others who expect me to be motivated by salary and fear of authority. I think I usually intimidate my supervisors with my intelligence and drive – I’m always trying to learn and understand more – and this can feel threatening to them, I suppose. Doing the bare minimum has never been part of my personality, and this also turns off colleagues who function this way when I make them look bad by extension. I’m also unwilling to compromise my moral principles, and this has gotten me chastised or fired in the past before as well. I also fatigue faster than most people.
What support do you think you/autistic people need to find/keep employment?
Autistic people span a huge range of functioning capability and needs; I don’t think there’s a singular answer to this question.
Does your employer/colleagues know you are autistic?
It’s kind of an open secret. My supervisor actually diagnoses autism for a living – in children – and I suspect may be mildly autistic herself. She has dropped hints that she knows I am. She’s the best boss I’ve ever had.
Do you mask in education/employment?
Not anymore. I’m my full self and people can take it or leave it and while I’m sure it’s locked me out of situations I might have otherwise been able to use for my benefit, I’m much happier this way.
Do you have accommodations made for your autism in education/workplace?
No, but hybrid working situations have been a game-changer. I save so much energy when I can work from home; I’m a happier and more productive version of myself.
What areas of your life do you wish you could improve?
My current work contract is going to end within a year or so and I’m very nervous about what comes after this. I wish I had an easier time finding work. And finding love.
What challenges do you face when trying to connect with others?
I have a wide range of life experiences it’s hard for any given individual to identify with. I don’t feel like I really belong anywhere. I’m not sure what’s to be done – accept that I will probably never be fully understood anywhere but appreciate the aspects of my identities that are in any given space.
Are you Introvert/Extrovert?
Definitely an introvert
If you could have learnt one lesson in life or childhood, what would it be and why?
To pay attention in math class so that as an adult I would have a more applicable mathematical skillset to get the knowledge and training necessary for a stable, reliable, decently paying career.
How do you feel about being autistic?
Maybe slightly ashamed. I value social conformity and this is one way that I stick out.
Do you ever wish you were neurotypical and why?
Not really; I can’t fathom what my life would be like if I were. I think relative to most people I’m probably happier – I have a job I literally look forward to starting every day, how many people can say that? – and that’s not a state of being I would like to trade for anything.
Do you have autistic/neurotypical friends?
I think my friends are probably mostly neurotypical. As I grow older the number of individuals I would classify as “friend” is probably shrinking, though. I have tried to make friends within female autistic spaces, but so many of them are screechy social justice warriors, it’s hard to find common ground.
Do you have a social circle/one friend/group of friends/no friends?
I tend to move states/countries every few years. It’s hard to sustain deep and meaningful friendships like this. I have distant friends from various chapters of my life who remain peripheral and whom I know I can call on and I’m appreciative of them. But for the most part, I’m very lonely.
If 60% of the population was autistic, what positives and negatives do you think there would be?
Assuming these are high-functioning autistics, I think we would have a much more logically organized world that values knowledge over status and much less systemic corruption. If these are low-functioning autistics, I think we’d probably live in a highly hierarchical world in which higher IQ people dominate the lower IQ masses in a kind of dystopia.
Thinking about autism research and studies, what questions do you think the professionals should be asking?
I think they should be looking for a common biomarker, such as a genetic profile, to provide more clinical validity to the autism diagnosis and then possibly develop prevention and treatment – which they are.
Are you interested in/do you consider yourself Feminist/Environmentalist/Socialist/Gender Critical/Trans Ally/Humanist etc
I consider myself a liberal humanist; I believe in equal opportunities for everyone who meet the meritocratic standard regardless of identity characteristics. I used to identify with the critical theories, but I no longer do. I believe fighting discrimination with discrimination – different standards for different groups in order to artificially create certain identity quotas – erases individual agency, creates unnecessary division, and is morally repugnant. I value egalitarianism.
Political stance?
Centrist progressive/old-school liberal.
Thank you J for your voice! 🙂