Kristen Hovet is a science writer and research communications specialist, covering health research and innovation. After being diagnosed with autism at the age of 38, she set out to create a platform, The Other Autism, to speak about late diagnosis in females and on the positive sides of being autistic. In Part One of her interview, Kristen shared her long path to obtaining an autism diagnosis and explained the more subtle ways autism can manifest both in herself and many other Autistic people. In Part Two she shares indicators for identifying autism in young girls as well as some common stereotypes about autism in women.
One of your recent articles recommends newly-diagnosed women seek out counseling or therapy to address common difficulties with low self-worth, ongoing sensory sensitivities, and hyper-empathy. In your experience, how difficult is it to find a “neurodiversity affirming” therapist?
I find it very challenging, especially if I do a local search in just my area. Some will label themselves “neurodiversity affirming,” but they won’t have an intimate understanding about autism, and this will be evident from the start. I’m learning that having lived experience of autism is a really important quality to have in a therapist. The understanding can go much deeper and you won’t have to spend so much time explaining yourself.
Perhaps surprisingly to some, many therapists and psychologists are themselves autistic or otherwise neurodiverse. We seem to flock to psychology like moths to a flame. I find this ironic, given that one of the main myths about autistic people is that we lack empathy (actually, we tend to have far more emotional empathy, on average, than non-autistic people) — yet so many of us work in helping professions. Autistic people are overrepresented in healthcare, education, counselling, and social work — fields where empathy is required.
Anyway, as more autistic therapists and psychologists are themselves diagnosed and become comfortable sharing this information, we can be more easily matched with those who have lived experience. I think it’s important for mental health professionals to include this information about themselves on websites and LinkedIn and other places where potential clients might find them.
Now with the increased use of Zoom and other virtual formats due to COVID-19, I think there are more opportunities to find autistic or neurodiversity affirming therapists.
What signs should parents, teachers, etc. look for in younger girls (elementary or middle school, for example) that might help them get diagnosed at younger ages, if desired?
While I was lucky to not have experienced much bullying from peers in school, I did experience rejection and teasing and abusive, manipulative behaviours — but much of this occurred during university years and adulthood. Almost all autistic children experience bullying or rejection from peers on account of their autistic traits. Every single autistic person I know has experienced this and so many personal accounts from autistic people include stories of bullying and abuse. So, if your child is being bullied or is having consistent problems with others at school, it would be a good idea to seek an autism assessment.
A lot of autistic children appear to be loners or lost in their own worlds — to those who are not autistic. We typically experience the world as magical and full of meaning and wonder, but what is reflected back to us is that we are weird or abnormal or too intense, too emotional — simply too much. We experience these reactions to the way we are as deeply painful and confusing, and we begin to feel like we have personal failings that we cannot control or manage. My own response to these types of messages from others was to become a chronic people pleaser. I tried to be the person that everyone wanted me to be and I would work hard to suppress and hide anything that I thought others would not like. This was ultimately detrimental to my physical and mental health.
We often develop low self-esteem starting early in childhood, and this can lead to self-isolating, depression, self-harm, and so on. Many of us develop disordered eating, and, in fact, eating disorders are highly co-occurring in autistic and other neurodiverse folks. Eating disorder prevalence is much higher for us than in the neurotypical population. So if your child develops disordered eating, or any of the above, it’s good to have her assessed for autism.
Connective tissue disorders, like hypermobile Ehlers Danlos syndrome, are highly co-occurring in autistic people. I was born with talipes equinovarus, also known as clubfoot, which required corrective surgery, casts, special shoes, and leg braces as a baby and toddler; and was diagnosed with hypermobile Ehlers Danlos the same year I was diagnosed as autistic. If a child is very flexible, “double-jointed,” or experiences partial joint dislocations or full dislocations frequently, think about getting her assessed for autism!
One thing to remember is that every autistic child is different. Some are very expressive and outgoing and others are reserved and prefer to sit back and observe the world. Some are a combination of both. Emphasis should be on assuring them that they are fine just the way they are. All children should be taught that there is no such thing as normal and that diversity is key to a happy, healthy community.
Some parents may suspect that their child might be neurodiverse, but they are wary of seeking an assessment. They might be afraid of stigma, or they might think they’ll feel embarrassed if their child is diagnosed. They might worry what a diagnosis means for their child’s future. I think this is starting to change as more people recognize the amazing qualities of autistic folks and as more autistic people open up about their own neurodiversity. But in the current state of the world, where being neurotypical is still the preferred neurotype, it’s important to help your child find support and find mentors who can help her accept herself for exactly who she is. Without this acceptance, she might overwork herself and abuse herself in various ways, thinking her “difference” is due to personal failings. The mental health repercussions can be quite devastating. And I don’t mean to sound alarmist, but I sometimes think that I would not have developed autoimmune disorders or even cancer if I had found ways to accept myself a lot earlier on.
While I have spent the majority of my life being too hard on myself and pushing myself to just try harder, my autism diagnosis has led to increased self-understanding and self-compassion. I think I will always be a high achiever, but I am learning when to let my body and mind take a break. I am learning self-care and how to check in with myself throughout the day.
What are some of the most irritating, infuriating, frustrating stereotypes you encounter about autism in women?
I think there is a deeply engrained myth that women can’t be autistic. Or if they are autistic, they have to present in very obvious ways. Another idea I’ve come across recently is that women diagnosed as autistic are faking or just trying to get attention. I know there’s been an increase in the number of autistic folks being open about their diagnosis, especially on social media, but I don’t think this accounts for the vast majority. From my understanding, most autistic people keep the diagnosis to themselves or share with just their families and close friends. Those of us who are publicly open about our diagnosis want to help others and tend to become involved in advocacy. We tend to be privileged to have enough support to feel safe in sharing this information, and perhaps share some personality traits that make public sharing not as scary as it would be for some. That said, it’s not an easy place to be for me. I have struggled a lot about sharing my diagnosis publicly, and I’m still not totally comfortable with it. I talk about it publicly because I ultimately think it will help others. I think it will get easier, but it’s been a real process.
It’s important to mention that almost all of us have dealt with imposter syndrome, specifically about our autism diagnosis. This seems to be unique to those diagnosed in adulthood, but could also be something shared by autistic people diagnosed at any age.
An irritating stereotype about autistic people in general is that we all are techies who desperately want jobs in tech. While we tend to be detail-oriented and great at systematizing, no, not all of us want jobs in tech! We usually have a good idea of our interests and don’t need anyone stepping in and telling us what we should be doing.
What kinds of microaggressions do you experience as an Autistic woman?
The main microaggression I have personally experienced is a kind of infantilizing or treating me like I’m quite amazing for just doing a simple task. This is deeply condescending and I feel it immediately. Some people are quite dehumanizing when they find out I’m autistic and have treated me like I don’t have feelings or like it’s impossible to hurt me. In truth, I’m very sensitive and very easily hurt. Not only do I feel pain very strongly, but I tend to carry the pain of others as well.
I am strongly self-motivating and have always been a high achiever, but when I’ve disclosed my autism diagnosis, some people have treated me like I need more supervision or micromanagement. This shows such a lack of understanding, and clearly these people were not interested in asking me or researching the topic.
An odd microaggression I have experienced but haven’t really tried to put into words before this interview, comes from those who are otherwise very strong advocates for equality, especially racial equality and equality based on obvious or external identifiers. While I am a proponent of equality in all areas, it seems that invisible disability is not on everyone’s radars yet. I’m a white, blonde individual who looks young for my 40 years. While I have a host of medical issues, they are usually not visible or obvious. And on days when they are obvious, I don’t leave the house or interact with others. So I’ve had people assume that I haven’t experienced much pain or difficulty in my life because I “look clearly privileged.” Given the amount of hardship I’ve experienced, this is a huge slap in the face and quite discouraging.
This particular microaggression is not due to being autistic, but is more due to invisible disability. And, sadly, I know I’m not alone in experiencing it. While autism bestows a great deal of beauty and ways of seeing the world that I would never want to be without, there are some very real challenges — most of which, at least for me, are invisible. Just because you can’t see the person’s hardships does not mean they don’t exist.
All that said, I am so grateful that the majority of people in my life are loving and supportive. And more generally, I’m an optimist and firm believer in human goodness. I believe that most people want to understand and don’t want to cause others pain. I believe in the power of education and advocacy to help dispel harmful myths and stereotypes about autism and neurodiversity.
Connect with Kristen