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This is my second interview in my series Interviewing Late-Identified Autistic Folx.
Sallie Hunter is a late-identified autistic blogger, whose work can be found on Medium. My questions are in bold and Sally's responses follow in regular typeface.
How old were you when you learned you were autistic?
49
What is your gender and are there any other identities that are important to you?
I consider myself a Demgirl or demiwoman which means that I am someone aligned with being female but I'm also another gender. Which for me is agender. It's fluid for me. So it's a non-binary gender. It's not non-binary in the way that most people think of non-binary who don't know much about it. People tend to think if you're non-binary you're either both male and female or you're neither. But being nonbinary isn't just one thing. There's so many non-binary genders out there. For me my gender identity is very much tied to how I was treated socially by girls.
I am queer. I'm bisexual or possibly pansexual I've never really understood the distinction between the two. But basically I'm not heterosexual.
How did you learn you are autistic?
I first suspected I might be autistic when I was 20 and I read this book that was written by an autistic woman called "Nobody Nowhere," but I didn't fit the stereotypes of autism back in 1992 so I convinced myself it wasn't true and I did such a great job that I didn't figure it out again until I was 49. I thought about it periodically over the years, but I convinced myself I was just mentally ill. I didn't really figure it out until last year.
How did you feel when you learned you were autistic?
I was stunned and shocked, but also it made a lot of sense. And then when I was diagnosed I was ecstatic because I now had a community to belong to and an explanation why things have always been so hard for me.
How has learning you are autistic impacted your life?
I have more friends now who actually understand me and don't judge me for the things that they are assuming I'm doing that I have not actually done. There is no subtext with us and being around people who believe what you are telling them is so refreshing. I'm able to communicate with autistic people in the style that is natural to me. I can unmask and be who I really am with people more. I just wrote something on Medium about how I now have a deeper love for myself. Despite all of my work in therapy for decades, self love has eluded me my entire life and now I'm actually experiencing it on a really deep level. I hated myself for almost 5 decades for being "broken". That's horrible. It's about time I love myself.
How did your friends and family respond when you told them you are autistic?
For the most part my friends were really positive. I don't know about my family they didn't really say anything about it. I guess one of my sister-in-law's told me that she was happy for me to find out the truth about myself. And I really only had one or two friends who didn't respond particularly well too my diagnosis. I don't know if they still feel that way or not. We haven't talked about it, but I do know that one friend was not wanting me to put myself in a box and make autism my identity. And I had to explain that autism absolutely is my identity. Autism is my brain. It's who I am. It's my nervous system. It's my body, it's everything about me. It's how I operate. It's how I think, how I create. It's how I view the world. I can't remove it from myself.
Is there anyone else in your family who is autistic?
There is. I am not going to identify who the person is because I don't know if they would want it to be known, but I do know that someone else was diagnosed as autistic in my family. And I'm pretty sure that there are several others who are autistic. I am of the opinion that both of my late grandmothers were autistic and I think that my father might be. But there's really only two of us that have been confirmed.
Did you seek out therapy, coaching, or other forms of structured support for autism?
I was in a support group on Facebook for a while and that was really helpful for the first six months after getting diagnosed. And I'm still involved with a weekly phone call that is a support group for autistic adults which has been so much fun and so beneficial. I am currently looking for therapist. We went through a serious financial hardship over the last year and so I couldn't afford to see a therapist and I really need to see one because dealing with the trauma and shock of it all is something that needs to be done.
How has your identification as autistic changed how you view your childhood or other periods of your life?
Being autistic effects my entire past. I have had to recontextualize everything. It's like being the physical embodiment of the movie The Sixth Sense, and thanks to this huge plot twist in your life, you have to go back and examine everything through a new lens. I see now more how much autism affected how I was treated by everyone, even my family. I also see how other people manipulated, used, and abused me because of being autistic and that can be a really painful thing to realize and acknowledge. We basically say in our community that no autistic person in our society gets by without having CPTSD. Being autistic is so much more traumatizing than people realize. Not just from overt abuse, but also social trauma in the form of rejection and sensory trauma.
What are ways you camouflaged or masked?
I didn't actually take on a whole new persona that was foreign to me. A lot of people pick a character in media and mimic them. I never really did that. What I did was curated my own personality and tried to cut out the parts that seemed to put people off and cause them to reject me. I was rarely ever successful at pulling off being neurotypical, but I tried. I also tried to get my "bad temper" under control which really was just meltdowns and so I quite often would just be very blank from the outside when there was so much going on on the inside and I was just trying to keep it in.
I did mirror people and copy their mannerisms or the way they speak and that sort of thing.--matched their energy. And I did it so well that now it's really hard to turn it off and not do that. It's so second nature I don't know if I'll ever be able to turn it off. I mean after almost 5 decades it's probably just not even worth trying to stop that. We get so good at copying that we copy accents subconsciously and it can be really embarrassing. Cuz it will happen without trying. I am trying to unmask more in public but it's traumatic. Because you start masking because of social trauma and social expectations and undoing that feels very vulnerable and unsafe sometimes.
How has your identification as autistic changed how you view your adulthood?
I can see now why I never really felt like an adult. It's because I don't feel like or act like a neurotypical adult. I'm an autistic adult and that's different. We just are different. I guess we're considered more childlike which is usually considered very negative but I don't see it that way. I think we are more fun. Lol
In what ways does being autistic enhance your life?
I am hyper-empathetic, so I feel deep affection or emotional empathy for people. I can understand how people feel in many situations better than someone who isn't autistic. I can also understand my child better than maybe some parents can because of my capacity for empathy. I feel like it's part of the reason why autistic people are so into social justice–our empathy and our sense of fairness. And I think championing social justice issues is one of our strong suits and it's one of the things that's very beautiful about autistic people. I think our adherence to honesty and our sense of integrity is really admirable. I also love that my brain can pick up on patterns really easily and I like how I think and how I create things. I really enjoy my creativity.
What are some of the challenges you face in being autistic?
Stigma and rejection, but also for many, human rights abuses. Society in general has it out for us. We are made to act like allistic people in order to make allistic people more comfortable and many children are being brainwashed and converted through ABA. And we don't have the same rights as other people, not really. It is still okay at the Judge Rotenberg Center to electrically shock autistic children with shocks ten times stronger than a stun gun. Scientists are mainly focused on "fixing" or "curing" us which basically just means eugenics and wiping us out so that we won't exist in the future. We're treated like second class citizens and not like fully actualized human beings. Our opinions are ignored and we are not even really allowed to make decisions in our own best interest as far as treatment for future generations of autistic children. ABA is a huge problem and autistic adults have been saying for years that it is traumatizing and damaging to autistic people and no one listens. It is worse if one is a BIPOC autistic. You can be in danger of losing your life.
How do you prevent overwhelm?
To prevent overwhelm I try to use whatever assistive devices I need. I'll wear my photosensitivity glasses and I will wear my headphones whenever things are too bright or too loud or a specific sound is bothering me. Keeping things quiet when I can't handle noise. Just accommodating myself. Pacing myself, not getting too tired, not taking on too many things, not having too many demands, not wearing myself out by doing too much. And sometimes that means turning down opportunities to hang out with people or avoiding being in public even when I might want to go somewhere. I also wear more comfortable clothes now then I used to and I don't worry about how I look. I don't wear makeup anymore I don't wear jewelry as much. I don't force myself to wear scratchy fabrics. Anything that I can do to decrease negative sensory experiences within reason helps. Increasing positive sensory experiences is also important like smelling pleasant scents and touching comforting fabric, or listening to my favorite songs over and over. Dancing, singing, echolalia, vocal stimming, it's all really helpful and keep me regulated.
What helps you cope during moments of overwhelm?
What really helps me during overwhelm is to get to a quiet, dimly lit area where I can be comfortable and calm down and regulate. Stimming. I can't forget stimming. It is hugely helpful with regulating my emotions and sensory overwhelm. It's miraculous how much it helps. When I'm panicked, flapping my hands which I know people make fun, of helps my nervous system calm down in a way that deep breathing never did. People being understanding, not taking it personally, or judging me, and being calm helps too.
What does a typical day look like for you?
I get out pretty early in the morning like at about 5:00 AM and I might sit down and write for several hours on my blog. Or sometimes I will make art for several hours in the morning while everyone's asleep. Then I take care of tasks around the house, cleaning and straightening up. I'll probably get on social media and converse with people and watch some TikToks. I hang out with my son who is homeschooled. I have lunch and watch TV with my husband during his breaks from his remote job. Then I probably make dinner or my husband will and we will probably watch TV in the evening, stay up late. We tend to be night owls around here and I don't get enough sleep which is bad but autism will do that to you.
What are some topics or activities you’re passionate about?
Well I'm really passionate about autism and have been even before I knew I was autistic. Psychology in general is very exciting to me although my views about it have changed a lot since finding out I'm autistic and I'm seeing just how informed by white supremacy it can be. But I'm still fascinated by how people's minds work.
I'm very passionate about making art. I don't care if anybody else appreciates it or not. I just enjoy making stuff. I'm very much into writing and that's kind of my current special interest It's where my hyper fixation is right now. I love television. That's been a special interest my whole life, television, and movies, celebrities, and acting in general I used to do some acting just in school and community theater. I miss it. I can't do it anymore because of my physical disabilities.
How do you describe autism to people who are not familiar with it?
I explain it as a neurotype, just a natural brain difference that evolved, and that I have a lot of extra connections in my brain as far as synapses and neurons go. It's a gift and also a disability.
What do you wish others knew about autism?
I wish people knew that we are often very empathetic people. We've been wrongly accused of not having empathy and it's just not true. We just show it differently and therefore people don't recognize it. I wish people knew that we are not intending to be rude to them or hurtful. We are just very direct in the way we speak and to neurotypical ears it comes off as being rude and inconsiderate. I wish people knew that we're capable of humor and sarcasm and that we're not children. Just because we don't understand your way of communicating doesn't mean that we're stupid. I was treated stupid so much throughout my life which was weird because I knew I was really smart and I could never figure it out until I found out I was autistic. It's weird how when you tell someone you're autistic their whole demeanor completely changes and they speak to you like you're not very bright.
I wish people knew that meltdowns are not bad behavior. They're a neurological event in our brains that happens because of sensory and emotional overload. It's like when you shake up a Coke bottle and it explodes. You can't prevent that once it gets going and we can't stop our meltdowns when they start. That's really impossible to do and it's really to our detriment to try to do so. Sometimes we can force ourselves to shut down and internalize it but it takes so much longer to recover from.
Are there any autistic characters in books, tv, or movies that you feel are relatable? Which ones?
The only autistic character that I really have related to would be Nicholas from "Everything is Gonna Be Okay." He's the only openly autistic character that I feel is a good representation of what most autistic people are like. Most autistic people that I know get their representation from highly autistically coded characters. Like Robin from "Stranger Things" or Amelie from the movie "Amelie." Or characters from Steven Universe and Bob's Burgers.
There's a lot of coded characters out there that are so much better at representing what we are really like than autistic characters in films and TV . Usually autistic characters fall into one of two different stereotypes. One is an autistic person that needs a lot of assistance in their life and is always viewed as a burden to their family which is really an unfair characterization to high support needs autistic people. The other type of autistic person that's usually in films is an autistic savant who's like a super genius. Think Raymond Babbitt in "Rain Main." Savants are very rare. I do have a couple of novels on my Kindle that were written by autistic authors with autistic characters, but I haven't read them yet I'm kind of excited about some of those. One is "The Heart Principle" by Helen Hoang. What is your advice for someone who thinks they might be autistic?
If someone thinks they're autistic, I recommend reading up on what autism looks like, especially autism that involves masking. Take some screening tests online. Read books about autism that are written by autistic people. Engage with the autistic community on social media apps. Engage with adult autistic people because it's invaluable to figuring it out, and you will find such a sense of community. And remember that you can self-diagnose if you don't want to go for an assessment. Be gentle with yourself because it's a life-changing journey, and don't forget to come up for air while researching and spend time with loved ones. Also, talk to your family of origin and people who knew you as a child to find out details about yourself you may not remember.
Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?
I recommend taking screening tests and looking up you information on embrace - autism.com, and reading the book "I Think I Might Be Autistic" by Cynthia Kim because she has a whole section on the DSM V criteria and asks you questions pertaining to the criteria about your behaviors and the way you communicate and live your life and it's very illuminating as to whether or not what you do and how you act is autistic. I recommend watching videos on YouTube by Yo Samdy Sam and Agony Autie. And just research research research. Look up studies, look up articles about autism, especially masked autism. Talk to the autism community on social media.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
I'm not the greatest for knowing what resources are out there. I basically just interact with the actually autistic community on social media apps. I would get involved in groups on Facebook and Discord and interact with the community on TikTok. There's a lot of good books out there to read I just ordered one called "Autism and the Edges of the Known World" by Olga Bogdashina, as a birthday present to myself and it sounds fascinating because it partially deals with things like precognition and how it might just be explained by how autistic brains work in a concrete way and not a metaphysical or spiritual way, so that's fascinating to me. There might be support groups for adult autistics in your area you might want to look into it. There are not any in my area unfortunately and I have considered starting one but it's just a bit overwhelming to think about managing that. I wish I had more advice.
Do you have any works, websites, or other creative ventures you would like to share with others?
I have a blog on Medium https://medium.com/@smcnettI . I write under the name The Autlaw there and I post several times a week about autism, being late diagnosed autistic, gender identity, eating disorder recovery, television, art, and any of my other interests that I want to write about. But I have to say most of it is autism related content, and even when I'm not talking about autism, it always creeps in there. Lol
Thank you for reading. If you would like to be interviewed for my interview series on Late-Identified Autism please email me at jackieschuldart@gmail.com
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