Women excel at hiding autism
But this can cause health problems in the long run.
Lina Liman had to wait almost 32 years for an explanation as to why she struggled to fit in and be like everyone else.
In April 2012 got her answer. Liman was diagnosed with autism.
"It's only now that I can see what a struggle it was for me to try to live like everyone else,” she said.
She didn’t understand herself. She didn’t understand other people. She worked hardest to manage the latter, but always failed. She felt like a strange creature who never felt the sense of community and the security of relationships that she saw others felt.
And until her diagnosis, she never understood why.
Liman graduated from high school in Lidköping, Sweden with top marks. Then she studied journalism. She was a “nice girl”.
But she paid a steep price for her life as a camouflage artist. When she was 25 years old, she completely fell apart.
This was the start of a long journey into the world of psychiatry. For seven years she spent a great deal of time in the hospital, sometimes voluntarily and sometimes involuntarily. She made several suicide attempts.
She was given a slew of different diagnoses during these years. Autism was not one of them— until 2012.
Today she works mostly for her own company, where she gives lectures and educates people about autism.
In 2017 she wrote a book entitled "The Art of Faking Arabic".
Unique research network
Kajsa Igelström is a neurophysiologist at Linköping University who started a network called "Extraordinary Brains" while she studied at Princeton University in the United States. She herself also has autism.
The network brings together researchers across various fields, with the goal of reducing the distance between the researchers’ world and those who live with autism. People who have had experience with an autism spectrum diagnosis are invited into the group.
The advantage of the online network is that scientists and ordinary people can communicate with each other. The network allows researchers to recruit participants for studies and to summarize research results. For those with an autism diagnosis, the network gives them a place to share everyday experiences.
Four times as many boys as girls are diagnosed
Autism is largely associated with boys and men, who are four times more likely to be diagnosed than girls and women.
But Igelström thinks there are a lot of undiagnosed females out there.
“Almost all autism research is done on boys and men,” she said. “We therefore know very little about how a woman's brain works.”
Igelström says this lack of knowledge has consequences. First and foremost, people with autism have more mental problems, often anxiety and depression, and especially women.
One reason that women and girls are less likely to be diagnosed, Igelström believes, is because they are like Lina Liman: Camouflage artists. They work hard to fit in.
Igelström recently published a scientific article where she looked at women and transgender people who have been diagnosed with autism later in life. She found that most people who are subsequently diagnosed with autism have some type of repetitive behaviour. Eighty per cent of people she studied tried to hide this.
"You might think it's good to be able to hide your autism. You are able to be more social and fewer people will judge you,” she said. “But studies show that hiding your autism is very damaging to your mental health.”
At its worst, hiding your autism can increase your likelihood of considering suicide.
Researchers face major challenges
Studying autism poses major challenges, Igelström and other autism researchers say.
They have no doubt that the brains of people with autism are different compared to people without autism. The problem is that researchers have not found one single change that applies to all persons with autism.
“The reason for this is that autism is not just one syndrome. There are probably many different types of syndromes," Igelström said. "Even though researchers can study two people who are the same with regards to IQ, age and level of autism, these people can still be very different.”
Nevertheless, Igelström is optimistic.
Social behavior involves three aspects: eye contact, the motivation to be social and mentalization. This last means understanding your own and others’ mental states.
These three aspects rely on completely different brain functions, Igelström says. She hopes that researchers will collect much more specific data in the future by measuring the different brain functions.
A difficult diagnosis that explained a great deal
As for Liman, she’s glad to have finally been correctly diagnosed, even though it was difficult news to get.
She now knows that she’s really not like everyone else — but that it’s not her fault. She has also devised what she calls “Lina-friendly strategies” to help her cope.
“After I got the diagnosis, I became a little more reserved, because I feel like I can give myself permission to be that way,” she said. “I now understand that I need to protect myself a little if I am going to be able to handle the situation.”
Read more in the Norwegian version of this article at forskning.no