I was listening to a lecture recently on autism diagnosis in adulthood. When answering questions at the end, the psychologist said there was a remarkable number of women going to his appointments for a diagnosis after reading something about how autism presents in women on social media or watching a video about it on youtube. It was a new and interesting experience for him.
For years, conditions such as ASD (Autism Spectrum Disorder) and ADD (Attention Deficit Disorder) have been mainly associated with boys and girls have gone undiagnosed. Recently, this historic mistake is starting to be corrected as women on social media have been raising awareness and helping other women get properly diagnosed. I am one of them.
At the end of 2020, I started suspecting I might be autistic after watching a few videos about it on youtube. I moved from videos to scientific articles to books written by autistic women who were diagnosed in adulthood. I ended up seeking a psychologist to get an official diagnosis. I was stunned as to how it took me 27 years to have such a vital piece of information about myself.
As it turns out, stories like mine are becoming more and more common.
For years, we assumed that autism was four to five times more common in boys than in girls. Recent research has shown that socialization can help girls and women assume a different persona to hide their differences in an attempt to fit in with others. This is called masking and although boys can also mask, it is thought to be more common in women. This makes them harder to diagnose.
Since boys were more commonly diagnosed with autism, the official diagnosis criteria is a result of data from studies done mostly on boys. So the reality is, until this day, we’re not clear on how many girls (and women) are actually autistic.
Sarah Wild from a school for girls with special needs in the UK said to the Guardian:
Autism in girls is massively under-diagnosed and as a result many are expected to cope in mainstream school. They often struggle, are bullied and isolated and become very unhappy. (…) The diagnostic checklists and tests have been developed for boys and men, while girls and women present completely differently.
A survey by the NAS (National Autism Society) in 2012 revealed that 20% of girls with Autism had been diagnosed by 11-years-old compared to 50% of males. It also showed that 42% of women had been misdiagnosed with something else prior to being diagnosed with autism.
In the last few years, the #actuallyautistic has become quite popular in social media. With that, undiagnosed women have been given access to a lot of information about how autism can present in them. At the time of this article, the #actuallyautistic on Instagram has 294 thousand publications.
There’s a lot of autistics on Instagram, Youtube, TikTok, and Medium sharing their stories and helping other women realize they're autistic and get a diagnosis.
However, a huge gap remains between this social media revolution and the real world because:
- It’s hard for women to get an official diagnosis since there are few psychologists and psychiatrists trained to diagnose them. A lot of psychologists are only familiar with how autism presents in children (mostly in boys) and are unlikely to diagnose women since they won’t recognize their traits. As a result, a lot of women end up misdiagnosed with several problems over the years (bipolar disorder, anxiety, depression…) when the main issue is being ignored;
- Autism research focuses mainly on the idea of preventing autism. Topics such as genetics are extremely common while topics such as mental health which could help improve the quality of life for autistic adults in the next few years are less so.
After my diagnosis, my psychologist highlighted the importance of finding a community. A group of people who understand my struggles and who I can relate to and have conversations with. In the absence of a non-virtual community, it can be an online one.
I started following people on Instagram who shared content about autism in adulthood. I joined a support group for autistic adults online. I felt better. Less alone. Although I’ve never met in person with anyone who was autistic (or at least that I knew was autistic), I feel close to a few autistic people.
Reading about other people's experiences with autism, and what they have done to improve their quality of life has been invaluable to me.
A study shows that autistic adults who used social media were more likely to have close friends. However, better offline friendships both in quality and quantity were associated with decreased loneliness. The conclusion is that although social media can be important for autistic adults, the importance of offline relationships can’t be underestimated.
The other day, a girl I follow on Instagram was saying that she’s tired of people telling her she should be grateful she was diagnosed at 19 years old when so many women are diagnosed much later. She said that she wished she was diagnosed earlier. She’s right. I was diagnosed at 27 and I wish I was diagnosed much earlier.
We know that the lack of a diagnosis or a misdiagnosis can lead to mental health issues long-term. So we need to do better for the next generation of girls and start diagnosing them properly for autism as well as ADD. Only then can we give them the proper resources so they can live a fulfilling life.
Ultimately, a lot of arguments can be done against social media but, for me, it has given me an answer as to why I am the way that I am. Having access to other people’s experiences on social media is making me come to terms with my new (autistic) identity. Perhaps if it wasn’t for social media, I would have gotten misdiagnosed or I would still be looking for an answer. For this, I will always be grateful.