It took almost three decades for Elena Wewer to get her autism diagnosis. Here, she explores the societal pressure to “drop” the word autism from her identity - and why she won’t be doing it.
Last month, LEGO released a social media graphic for World Autism Awareness Day. The image showed a LEGO astronaut in space and above it was the words “I am autistic an astronaut”, with the word “autistic” crossed out. Underneath, it read: “Don’t lose dreams. Lose labels. World Autism Awareness Day.”
The irony of this rallying cry seemed lost on LEGO: on World Autism Awareness Day, they were calling for autistics to “lose” their “label”.
Social media backlash was swift among the autistic community, and for good reason.
“Autistic” is not just a label. As a diagnosable neurotype, autism is an inherent part of our identity that, when named, can become a source of power and liberation. For many autistics, particularly girls and women, just getting to the point of a “label” (diagnosis) is a journey that can take years, or even decades.
For me, it took 28 years and multiple mental health breakdowns before I was finally diagnosed with autism. Discovering my autism has enabled me to discover myself. My simple “label” has become the key to understanding my behaviour, personality, and relationships.
Since realising I am autistic, my entire life has finally made sense. Armed with the power of my “label”, I learnt more about myself and my community in three months than I did my entire life prior to diagnosis. Most importantly, knowing I am autistic has not only allowed the jigsaw pieces of my past to fall into place, it has given me hope for my future. A future with the support and community I deserved, but never got, as a child and young adult.
When we realise the importance of a “label”, and the power, community, and advocacy that diagnosis brings, it becomes obvious that telling autistics to “drop” their label is patronising at best and offensive at worst. The insinuation is that autism is something we can rise above or overcome (in order to become an astronaut, for example), and that being autistic is something inherently bad or unwanted.
It is similar ableist thinking that prompts well-intentioned people to tell autistic people they don’t “seem” autistic. They mean it as a compliment, of course - the subtext often being “you’re too smart to have autism”, or “you can’t be autistic - you have friends”. The problem with these backhanded compliments is that they erase autistic people’s lived experience while also reinforcing the restrictive stereotype of how (typically male) autism presents.
Not all autistics are antisocial maths geniuses or non-speaking, hand-flapping children, and the fact so many people still stereotype autistics as Sheldons or Rain Mans reveals just how little society knows about autistic people, especially girls and women.
Many of us have perfected the art of masking (mimicking the behaviour of neurotypical people to blend in with them) and have struggled silently for years before finally getting a life-affirming diagnosis. To then be told by others that we don’t “seem” autistic, or that we should reject our “label”, is a devastating insult to our identity and a painful dismissal of our struggle.
This is particularly true when it comes to us achieving any notion of success, whether that’s becoming an astronaut or making a new friend. The current narrative remains that autistic people can achieve if they simply cast their autism aside - lose the label and try a little bit harder. The reality is, autistic people are going to succeed because of their autism, not in spite of it.
Even if our autistic victories look different to neurotypical wins, every one of our successes comes from embracing the autistic “label”, not rejecting it.
Elena Filipczyk
Elena Filipczyk writes about animals, autism and chronic illness. She is a rollerskating and music-obsessed vegan and intersectional feminist, who is autistic and has ADHD.