When I tell people that I’m autistic, a lot of questions come up. Sometimes it has to do with how I personally experience being autistic, other times it’s about autism in general. For this week’s post I decided to collect questions from those around me and answer them in a public format. Disclaimer: for questions that focus on my specific background, please remember that I’m just one autistic person; we’re all unique in our own ways.
TW: Mentions of Autism $peaks, suppression treatment/therapy/cure, and prevention/pregnancy screening
Q: What causes autism? Is it genetic?
A: While there is no confirmed cause of autism, heredity is one of the stronger possibilities. There has been a strong prevalence of autism found in families such as my own; certain traits have been observed and noticed in my dad and paternal grandmother since I was diagnosed as a child. Research on the heritability of autism has been conducted, but no gene nor genetic mutation have been specifically detected.
Q: How have ESAs helped?
A: Having Greg and Charles (my two guinea pigs) has been extremely helpful when it comes to needing to talk about something that is on my mind. I have a tendency to stay up extremely late and often times there are few people for me to talk to even online. The boys are always with me and – since they don’t sleep a lot either – are always available to hear my thoughts. Although they can’t speak back, it’s a relief to know that I a) won’t be judged or misunderstood, and b) don’t need to properly articulate myself and can speak freely.
Q: Why do some autistics have chew toys and squishy things all the time?
A: Those objects are used to satisfy a need for sensory output. Due to the high sensitivity that many autistic people experience, they take in a lot from the world around them and need to process it through an action called stimming. Stimming can take many forms, including flapping, rocking, fiddling with hands, and playing with objects. Toys like fidget spinners were initially designed for autistic folx and others with similar output needs so that they can process the inputs.
Q: Which sounds are most painful/annoying?
A: Hand dryers, fire alarms, fluorescent lights, hair being pulled out of the roots (it’s really quiet but still piercing), toilets flushing, ice being scraped off, gunshots, fireworks, and vacuum cleaners.
Q: Which senses are most affected?
A: All my senses are affected, yet it’s most severe for my hearing, sight, and smell. The aversion to scent was a lot stronger when I was a kid, but I still experience discomfort when I walk through perfume sections in stores or am around particularly strong-smelling food. My sensitivity to light usually results in me sitting in unlit rooms for longer than what would be expected, wearing sunglasses outside even when there’s an overcast, and sometimes avoiding going outside altogether.
Q: Is there a possibility for pregnancy screening?
A: The idea of pregnancy screening for autism is a rather slippery slope. Personally, I think it could be helpful in learning the probability of a child being autistic before they are born so that they can be supported and aided in their social and sensory integration early on, making their lives more comfortable as well as becoming more understanding of themselves. However, many people who want to screen for autism during pregnancy wish to do so not because they want to help their children but because they want to prevent their child from or abort the fetus if they’re found to be autistic. This is often the focus of research for hate/neurotypical-run groups like Autism $peaks, making it harder for actual autistic people to raise and explore their inquiries. Until the core goal is pulled away from prevention and placed on support, I don’t wish to promote that form of technology.
Q: What is the most difficult part of talking to strangers?
A: The biggest problem is trying to make an impression. Something a lot of autistic people do when they are socializing (especially with neurotypicals) is masking, in which they make efforts to disguise their autistic traits. When I’m talking to someone for the first time I tend to put on the mask because I want them to perceive me as “normal.” Communicating with people in general takes a bit of multitasking for me (another post for another day), so putting up a wall between me and them is an added expense of energy that can make the conversation exhausting. When it’s all mixed together, it can cause a great deal of anxiety for me; on top of draining my social battery, talking to strangers amps up my nerves and makes for what can be a highly miserable situation.
Q: Why are some autistics more “normal” than others?
A: It’s not that certain autistic people are more or less “normal,” it’s a factor of their ability to mask and the severity of symptoms. There are a wide range of traits autistic people can display, including social/communication irregularities and repetitive behaviors, all of which have their own spectra. For example, some autistic people struggle with motor skills and require assistance like wheelchairs, while others do not struggle with mobility. Here’s a comparison of how we’ve looked at the autism spectrum in the past and how it really should be viewed:
Autism comes with many different “flavors,” and each flavor has its own strength of taste.
Q:* My nephew (ze/zir/zem) has Asperger’s and is nearly 30 years old. Ze is transitioning and is Polyamorous. I would like to be supportive of zir as well as my sister…. Bonding over fashion, hairstyles and make-up has drawn them even closer and my sister accepts and is supportive of zir, who lives with her. I’m on the opposite coast and haven’t been as close as I’d like because her kids largely grew up living far away. I’m a lesbian and my wife seems to have more interests in common with zer, or at least did the last we got together. I love zir, who has such a gentle spirit and sharp mind.
What can I do to be supportive from a distance beyond the typical birthday and holiday gifts? At times ze has gotten depressed…. I worry about zir…. do you have any special insight to share?
*This question has been edited to maintain topic focus and save space.
A: I’m very glad that ze has such a strong support system and accepting family. Being an autistic trans person myself, I know how important that is for overall well-being.
I’m not sure what style of communication ze most appreciates, but finding out and keeping in touch with zem in such a way could be very helpful. Just knowing that you’re there (albeit not physically) can be very comforting, and setting it within zir realm of amenity will make zem feel more at ease. As far as communicating goes, asking zem about zir hobbies and special interests will show zem that you value zem and zir thoughts. Of course, be sure to ask zem if there is anything ze would especially benefit from; even if ze doesn’t have something in mind, ze’ll know that you care about zem.
Q: What therapies do you consider important?
A: When seeking out therapy for managing symptoms of autism, I think it’s important not to seek out ones that will try to suppress and change natural expressions like stimming, such as applied behavioral analysis (ABA). Occupational therapy (OT) and speech therapy (ST) that work to lesson the barriers between autistic people and the world around them through learning coping skills for anxiety and sensory overload are very important, as well as physical therapy (PT) for those that have limitations with their motor skills. As a kid, I was enrolled in all three and they tremendously helped me with my ability to manage the “frictions” (as I like to refer to them as) I have in mainstream society. The main thing to remember when it comes to any therapy or treatment is support, not suppress.
Q: Can it be treated with medication like ADHD?
A: There’s really no medication specifically meant to treat autism, although doctors can prescribe meds to treat certain symptoms such as seizures and anxiety. Risperidone, a medication used to decrease irritability and mood swings, is the only medication officially approved by the FDA for autism spectrum disorder. However, it should be noted that autism in itself is not a disease that needs to be treated or cured, which brings me to my final question.
Q: What is a common stigma for autism?
A: There are a large handful of stigmas I could talk about, but the one that bothers me the most is that autism is a tragedy. Over and over again I see autism mom blogs that tear their children apart and paint them as burdens they’ve been suffered to carry. Imagine how that makes autistic people feel, let alone the children who will later read what their parents have written about them. Being autistic doesn’t make us less or defected; we’re simply different. This stigma not only perpetuates the negative social perspective on autistic people but it also prevents people from seeking diagnoses that could allow parents of and autistic folx to gain more insight about, and find ways to advocate for and support themselves. It also makes it so much harder for autistic people to be treated with respect and understanding by those they encounter during their daily lives, such as cashiers, doctors, teachers, and coworkers. All we want is to be accepted by others for our authentic, autistic selves.
If you ever have any other questions about me or autism, please feel free to send them my way. I’m always happy to share information and build on people’s understanding.
Thank you and have a grade-A day!
The Life of Linn 