Autism Interview #141: Tara Campbell on Parenting, Ableism, and Autism Advocacy

Tara L. Campbell is a speculative fiction and creative nonfiction science writer with a professional background in technology. She enjoys writing at the intersection of science, technology, and disability. Stories about overlooked or misunderstood people and concepts are key aspects in her work. This week Tara shared her experiences as an Autistic advocate and parenting neurodiverse children.

How did you first become aware of your autism diagnosis? Was it explained as something positive, negative, or neutral?

I was diagnosed at 37 in my last year of graduate school three years ago. I sought help because I was at a breaking point: between full-time school, full-time work, and full-time parenting, I was afraid of where my mind was headed. Both of my kids are autistic, one of whom is dyslexic (a learning disability not officially recognized in public schools here in Oregon until 2018), while the other has an intellectual disability. All this is to say that I was in crisis when I finally sought help. Fortunately, the doctor I worked with specializes in neurodiversity care–she’s where I learned that term–and is a big advocate of changing the narrative on autism. The experience was positive as she made it clear that there wasn’t something wrong with me, my mind just doesn’t work the way our society’s norms imply they should.

What draws you to science writing or the intersection of science, technology, and disability specifically?

The primary reason is the gap that exists between what experts in the fields (science, technology, disability) know and how this information is obtained and used by people in general. We are often quick to point out the problem is a lack of foundational STEM education, and that’s why we don’t listen to experts, but the bigger issue is that we think like lawyers. An idea is sparked, and we spend a lot of energy finding all the facts to back that idea up, including the support of large organizations. Unfortunately, no matter how thoroughly the idea is debunked or discredited, the suredness of all that lawyerly-gathered information is fixed in the mind. However, while I learned the hard way through firsthand experience on how we get pulled into believing false ideas, I had the advantage of feeling comfortable with the fact that for all I do know, there is so much more out there I do not know. This drives an insatiable curiosity, and a relentless need to learn more.

The secondary reason is that my life experiences all revolved around these three areas in some way. I’ve been involved (obsessed) with technology since I as a small child, enjoyed anything science-related, and had met disabled people in my teens and young adult years who had made powerful impressions on my understanding of disability. Later on when my kids were diagnosed a few months apart, all my energy went into doing everything I could to follow the prescribed directives of the many specialists they each had. Through the years of various therapies and interventions, I found the only reason I was remotely successful in managing everything was through the use of technology. I also witnessed how much more capable my kids and I seemed to others, thanks to the use of technology that eased the heavy burdens of communication and organization.

What ableism have you encountered as a child? As an adult?

I can’t speak much on when I was child since I wasn’t diagnosed until well into adulthood. What I did experience was the trauma of being held to the standards and expectations of people without the same baseline tools as everyone else. I found elementary school report cards and read the comments from teachers on my exhaustive sensitive nature, frustration and angry outbursts, and a general lack of understanding relative to my peers. I do remember feeling constantly out of place, and always doing something wrong.

As an adult, I am uncomfortable saying I have a disability. I have years of internalized beliefs to unlearn. The screeching “you’re not like my child, he has actual problems!” is hardcoded so deeply that even with the science today, and the fact that I have an autistic child with a comorbidity which is the real reason he will not be able to lead a fully independent life, the crush of doubt hits first. I don’t talk about my consuming anxiety, or the ways I cope with it, the painful procrastination that grips me to the point of paralysis, and I don’t share with many that I hate being touched at all–an awkward revelation for someone who has given birth to two children. The conferences that everyone insists are the ticket for career advancement are sensory nightmares that leave me exhausted and with another degree of anxiety because no matter how many ways it’s explained, I cannot wrap my mind around why we waste so much energy on maintaining tenuous connections with strangers when I will invariably over-invest while the other party won’t remember who I am two days later.

In my day job, I hold a lot of responsibility as a subject matter expert and a team lead. I have to triple my efforts when it comes to masking; however, my role requires communication at a variety of levels internally and externally which is not easy and a big reason I pursued English and writing degrees instead of computer science. The latter comes naturally, the former has taken me six years of study, and I still fumble. The ableism is especially tough when it comes to verbal communication required in meetings and presentations. One minute I think I’m okay, then the next I’m hit with sudden mutism that I can’t overcome at will. The push for video conferencing is unbearable, but I can’t explain to my managers the deep uncomfortable feeling that comes from all the faces involved. Eye contact in general evokes unease which is hard to work around when I’m trying to focus on articulating important information. This is why the traditional interview and/or networking-for-advancement model sets autistic people up at a huge disadvantage.

In what ways is/are your Autistic child/children leading a different childhood than yours? In what ways is it similar?

I’m grateful that my children are teenagers today in the time of #ownvoices. No longer are they relegated to an education system that lumps students into cohorts based on underachievement. Instead, their areas of need are addressed and accommodations made which allows them to attend general courses with all of their peers, but also have specialized study in designated spaces tailored according to their needs. The case managers and special services coordinators are active champions for my kids, and work with me to modify services. (I realize this is not standard across the US, we happen to be in a very good school district).

I did not receive any support services growing up, and as a result, I dropped out of high school my sophmore year. If I had had just one adult advocate who recognized I had needs that were not being met, I imagine my academic life would have gone a far different route.

The similarities that I experienced with my kids, and which I think gave us all the biggest advantage, were the advancement and availability of technology. I found community and social connection online; so too do my kids. The overwhelming parts of life in general are remedied by digital tools and communication options.

What mistakes do you see well-intentioned neurotypical autism advocates make?

Buying the idea that your child is broken. I cast no judgement here as my own internalized ableism had led me down this path, and as someone who goes all in when it comes to solving problems, I was deeply invested in the idea. Your child is not broken, they don’t need a cure (AKA: to conform), and you are not a failure.

A lot of NT parents seem committed to conforming their child to the environment that suits everyone else but the autistic child. I’ve seen so many cases where people will go out of their way to accommodate the needs of their pets, then roll their eyes and stamp in frustration when it’s suggested that maybe it’s unnecessary to keep the TV blaring all day long. Spend time observing instead of controlling and you can start to see how prevention of a melt-down is so much more effective than trying to initiate “strategies” from therapy in response to one.

Tip: birthday parties with every kid in the class invited are miserable. There are a lot of “normal things” like this that you should aspire to in the first place. My kids are terrified of Disneyland/theme parks in general, so I never worried about that as a quintessential childhood family vacation option. Instead we go to the beach, just the three of us, to roam free and eat caramel corn and ice cream.

What are some of the most important ways parents can help raise their children with positive Autistic identities? (Or prevent/combat the development of internalized ableism?)

The previous question covers most of my thoughts on this, but I’ll add that parents need to steer clear of the “mommy martyr” memoirs and essays. I don’t want to dismiss the agony of having to parent disabled children in a society that offers little to no supports; I know how isolating and hopeless it feels when the world is telling you that you’ve got to fix your kid so they’ll somewhat conform to the norms, and you’re on your own emotionally, socially, and financially. Reading about autism through the lens of the non-autistic will only feed your misery. The same goes with support groups: all that ever happened was either parents sat around in frustration, pitying one another, or they compared the abilities of their kids. A bad stereotype is the “autistic genius” which everyone seemed to one up each other with, while I’m sitting there with a child who had severe developmental delays that would not just undo themselves one day to reveal his inner genius. Surround yourself with people who accept your child as they are, that’s it. If you’re struggling, see a therapist who will give you actual tools to help overcome the problem, not simply follow you into the pity party or make you feel inadequate.

Once you are free from those constraints, you will feel more confident in how you communicate with your child about their needs, and that is how they learn to recognize difference without feeling less than.

What books, essays, authors, etc. would you recommend for individuals interested in reading fiction or nonfiction featuring marginalized voices?

Nonfiction:
NeuroTribes by Steve Silberman – I recommend this book as the #1 starting point for everyone, especially parents/guardians and newly diagnosed individuals. The history of autism is foundational for understanding where we are today with neurodiversity. Plus, it is a much more inspiring and hopeful perspective to work from than the devestating tone that is often found in clinical diagnosis.

Fiction:
The Unkindness of Ghosts by Rivers Solomon – Nowhere in the story is it stated that the protagonist is autistic, but everything about Aster Gray is immediately recognizable as such. The terrible truth is that her most intense or overt mannerisms overlap with those who have been subjected to lifelong abuse. If you want to know what autistics of color have to endure in real life today, this fictional, afrofuturistic account hits the mark dead on.

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