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.
This interview has been edited for clarity and brevity.
KrASIA (Kr): Could you share more about your platform ‘The Other Autism’?
Kristen Hovet (KH): I was diagnosed at the age of 38, about a year after a therapist mentioned that some of my traits reminded her of her autistic child. The therapist was just talking to me and listening to some of my sensory issues. I’m sensitive to really bright light and loud noises, and she assumed that I was autistic and that I had already been diagnosed. I said, “No, I had never thought in a million years that I was autistic.” That started the process for me of looking into it more, and eventually, I had a formal autism assessment and was diagnosed with level one autism — formerly known as Asperger’s syndrome or high functioning autism.
When we read about autism, the content usually focuses on deficits and negative qualities. Most of the research, from the very beginning, has focused on males, and there wasn’t much information on how it could present in females. This was why I started my platform — I really wanted to talk about autism, specifically autism in those who identify as females, and I wanted to talk about it in a more positive way. I aim to focus on the process of how to get diagnosed for women, and on hope and the positive side of being autistic.
Kr: You’ve mentioned about diagnosis in females. Why do you think it is harder to diagnose females in general as compared to males?
KH: As mentioned, most of the research has focused on males and, more often than not, the male presentation of autism tends to align more closely with official diagnostic manuals. For example, when you look at the DSM-5, what you read there is basically how autism normally appears in males. Some women can and do present with this “classical” autism, but it’s my opinion that most autistic women are not getting diagnosed because the criteria for diagnosis are too narrow. In short, the criteria need to expand to include the more subtle ways that autism can present in females.
On the other hand, females tend to (but not always) be more socially inclined, or their repetitive actions are more socially acceptable, such as playing with a pen or biting their lips or nails. It is much easier for them to be diagnosed with other things like depression, anxiety, borderline personality disorder, or OCD than be identified as autistic. So very often, she’ll go under the radar for many years, until adulthood — if ever.
Another reason why it is harder to diagnose is because of masking. While everyone has a persona when in public, autistic girls and women mask more strongly. It is not a conscious behaviour, but they would think that this is how it is supposed to be. That being said, this is starting to be more recognised, and it is starting to be introduced to clinicians when they’re going through their training, but there is still a long way to go. This is another reason why I wanted to do my website — for healthcare professionals and anyone else who might be interested in understanding more about the female autism phenotype.
Kr: How can we identify signs of autism in females, especially at a later age?
KH: For females at an older age, it can often become evident after something difficult happens in a woman’s life, and certain symptoms stand out more during that time. For me, it was after my cancer diagnosis, having to go through the process of treatment and sort of having my world fall apart and realise that, “Oh my gosh, I have all these issues that I haven’t looked at and I’m not coping well at all.” For many, sensory issues are a very big thing, or they feel like they never quite fit in in groups. They would prefer to work in smaller groups or alone or might go for long periods of not working before returning to work because they often struggle with burnout.
There are also studies that show that people diagnosed with dyslexia or eating disorders such as anorexia should be tested as well. Another one is hypermobile Ehlers-Danlos syndrome, which is a connective tissue disorder that often appears alongside autism. These are all signs to look out for.
Kr: Has it been different for you after being diagnosed with autism?
KH: I think I’ve always felt that I was different, especially in high school, like I was more emotional and that I would think about things more deeply. People often made comments and teased me, such as “Oh you’re so intense.”
Knowing that I’m autistic, I guess, helps me to look back on my life with more self-compassion. I realised why I was different from others, it was just simply that my brain is wired differently. I used to wonder about my sensory issues and why it wasn’t as hard for other people. In a way, I felt that it was a weakness on my part, and I would be pretty hard on myself. But now, I can look at myself more gently, and that has definitely been helpful for me.
Kr: In one of our emails, you mentioned that “most of the autism community does not believe in seeking treatment or cures, but would rather focus on how we as a society view autistic people and how we accommodate and respect their differences.” How can society help in this respect?
KH: In public spaces, it would be very helpful to pay attention to lighting, colours, noise levels, and so on, and actually have autistic people involved in the design process. I know of therapists who’ve asked autistic people to visit their office spaces to ask for their input, and this is so refreshing to the autistic community. Having someone who’s autistic or an autism advocate to help and ask them if there is anything you can do to make their work easier will help. In summary, I think it’s about allowing the autistic community to have a say. With all the hustle and bustle, the world is often not a friendly place for an autistic person.
Kr: Is there anything you would like to say to others out there?
KH: The biggest stereotype most have is that autistic people don’t have empathy. This is the most damaging stereotype, in my opinion, because it’s simply not true and can lead to mistreatment of autistic people. If anything, we have more empathy, especially emotional empathy. We just express it differently. First and foremost, autistic people are human, it’s just that we’re wired differently. If you find out that someone’s autistic, try to see the person and not the label, because not everyone who’s autistic is the same. We are not defined by that one word. Try to see the similarities instead of focusing on the differences.