Breaking the stereotype of autism and Seeing the Unseen

I am a 47 years old mother of three. I am a physiotherapist who has worked in acute settings at the National University Hospital of Iceland as a section manager of the neurosurgery ward, as a co-owner of a private clinic and also with chronically disabled people in a day facility for MS patiens.

For several years I was active at the front of the Icelandic physiotherapists union and from there went on to lead around 30 unions as President of the Icelandic Association of Academics, one of our labor market’s social partners. I held that post for 6 years, representing our members in wage agreements and negotiations of workers’ rights, among other duties. I served on the board of Iceland’s biggest retirement fund and also took part in various committees formed by the national government.

I became President of the Academics in 2008, the year of the financial crash, and in the same year I took part in opening a private physiotherapy clinic, where I built up, among other things, infant swimming lessons, pregnancy swimming and courses in postpartum health for women, which I translated myself with permission from the Canadian pioneer Diane Lee.

In 2013 I participated in founding a new political party in Iceland and was on the ballot for the parliament elections in 2013. In 2014 I lead our party in the municipal elections in my home town, became a city councilor and president of the city council in a majority coalition. After a difficult internal conflict within the party I decided to resign my membership, serving the remainder of my term on the city council as an independent member.

In 2018 I started a new nonpartisan party in my home town, along with both former colleagues from the city council and new candidates. We ran a very short but successful election campaign which means that I’m still on the council, although this time around as a member of the minority.

After I entered politics I resigned from my post at the Academics Association, but later took a 50% post in the Department of Physiotherapy at the University of Iceland, where I was responsible for clinical placements of physiotherapy students.

The viking woman?

So I guess you can say I´ve been quite busy, both professionally and socially. Icelandic women in general are very active and we have a very high participation in the labor market. Still i must admit that I may have ranked a bit above average in this regard.

I am also autistic

As mentioned before, I have three children, all boys. Two of them have been diagnosed on the autism spectrum (Asperger). They share several of the traits people usually relate to autism, not surprisingly, being young boys at the time of their diagnoses.

I myself do not fit the traditional stereotype of autism such as it has been depicted through the years. My own autism therefore escaped me for years, despite both my professional insight as a physiotherapist and my avid reading on the subject following my sons’ diagnoses.

What did I miss?

I began this post with excerpts from my CV in order to highlight this discrepancy. Many would say that someone who interacts with people on a daily basis in a demanding setting such as an acute hospital ward, then goes on to lead unions in negotiations for several years and not only participates in the labor market but usually holds two posts at a time would not fit the description of an autistic person.

But I am an autistic person.

More precisely I am an autistic woman, diagnosed late in life because of the overwhelming gender bias present in autism studies. It’s only in recent years that women on the spectrum are truly being seen, identified and diagnosed. We still have a long way to go in order to reach equality for autistic girls and women. We are still being missed in the school system, still being misunderstood in the health care system and still being marginalized in the social welfare system.

This has to change

I left out some very important facts in the story at the beginning of this post. The unseen facts of my life, the reality behind the official picture.

I left out the fact that I have been dealing with autoimmune issues for decades, both gastrointestinal and musculoskeletal.

I left out the fact that I have a history of bullying at school and abuse in a close relationship.

I left out the fact that I have dealt with both anxiety and depression at various times in my life. And fatigue. Fatigue with a capital F.

I left out the fact that I have multiple sensory issues, involving light, noise and touch and that I find it very hard to function in busy places where there are large numbers of people.

I left out the fact that in the spring of 2018 I experienced a severe burnout, leaving me completely unable to function.

I left out the fact that I am still recovering from the burnout and currently stand at maybe a 50% ability to work. 50% of a normal 100% post that is, nowhere near 50% of my previous activity level.

The female autistic stereotype

This is not uncommon for autistic women. This is our current stereotype, which we need to break no less than the “boy-who-knows-train-timetables” stereotype.

The mere fact that most of us have gone undiagnosed until middle age is a big factor in this equation.

We have rarely received appropriate assistance in our struggles, whether with sensory issues, communication troubles, work-related conflicts, bullying or abuse.

We have had to fend for ourselves.

This has often cost us our health, in one way or another. Many of us have coexisting issues, such as hypermobility-related pain or fatigue and digestive issues. Many of us have been diagnosed, often misdiagnosed, with a variety of psychological problems. As a result of being misdiagnosed, many of us have experienced bad treatment outcomes and been left feeling inadequate and misplaced.

Some of us have been measured against the scale of typical male autism (as if there really were such a thing) and declared normal. We have missed out on getting to know ourselves and understanding our neurology. We have been left with a faulty users manual, trying to fit into boxes that were never meant for us.

Breaking the stereotype

Women’s manifestation of autism is different, but not less. We may look less “abnormal” than many boys on the spectrum, but that doesn’t make us “normal”.

We have easily identifiable traits, as long as you take the time to look for them, and we have our own set of specific needs.

Autistic girls need accommodation in school in order to fully thrive. Autistic girls and women need special consideration in the health care and welfare systems. We need to be seen.

That can only be achieved if we manage to break the autistic stereotype and pay attention to the lived experience of people on the spectrum. We have many voices and many important messages. Please take the time to listen.

Autistic girls not only need to be seen, they also need to see autistic women. They need to be able to recognize and identify with those of us who have gone through the same challenges and maybe discovered a few solutions. That is why I’m here. That is why I’m speaking up.

And that is why Seeing the unseen is so important. Please join us in spreading the word.

Leave a Reply