The following is my presentation at the conference “Women’s Autism, Recognition and Assistance” hosted by the Lithuanian Autism Association “Rain Children” on the 1st of April 2021.
17 women
You have just watched a film (Seeing the Unseen) portraying the stories of 17 women on the Autism spectrum. 17 different women, yet so very much alike. I may speak only for myself, but I feel that each of us could have presented any of the different chapters in our film. Stories of being bullied at school or at work, of feeling alone and of not belonging. Of trying and failing, and trying again.
Many of us have tried several different studies, many different jobs and various roles in life. There seems to be an unusual diversity in our endeavours, moving from legal studies to musical education, from geology to Russian philology, from physical therapy to designing knitwear. We all struggle, run into obstacles but keep on going, using our strengths to navigate the world.
Our talents seem to lie more in learning, studying and observing than in doing, participating or implementing what we‘ve learned. We repeatedly fall down but eventually stand up again, somehow always seeing the best in the people around us, despite recurring conflicts and misunderstandings. All too often surprised to find that the the world around us isn‘t always kind.
Looking at our stories, it‘s evident that our compensation strategies evolve following the discovery of being on the autistic spectrum. Along with a better understanding of ourselves we become a little less sporadic in our attempts at life, more respectful of our needs and and even a bit less judgmental of our shortcomings and ultimately amazed by how far we‘ve come after all.
In the time that‘s passed since the release of the film this effect has grown even more. The participation in this educational project has proved empowering in 17 different ways, even though there have also been conflicts and mixed emotions along the way. After all we are all autistic. Conflict is our middle name.
Impostor syndrome
When Bjarney and Kristján began filming „Seeing the Unseen“ it had only been a few months since my official autism evaluation. I had suspected beeing on the spectrum for a few months longer, following the diagnosis of two of my three sons. I was very eager to share my story wherever I could, for many different reasons.
At the extremely selfish end of that spectrum, I felt the need to share my newfound „label“ in an attempt to erase the several negative ones I had carried around for so long. I felt vindicated, finally able to reasonably object to being arrogant, self-centered, weird, a know-it-all, insensitive or rude.
At the other more altruistic extreme was the urgency to share my knowledge about girls and women on the spectrum, knowing that lives could depend on spreading that information and understanding.
The story of autism in girls is one of human rights and gender equality in an area of human experience that has lagged behind for much too long. We have a lot of catching up to do and I am determined to contribute to the task in any way that I can.
I never the less went through an intense imposter syndrome during the filming. What on earth was I doing in a documentary about the lives and struggles of autistic women? A highly privileged woman of good means with generous access to power? Why was I taking up space from other women who were struggling more than I was? The ones not used to having their voices heard.
I tried to remind myself that I had in fact been asked to participate and that the makers of the film seemed genuinely interested in hearing my story. I also reasoned that since I did have a voice and a platform to reach the ears of authority figures, I was almost obliged to use them. None of us can speak for all autistic people, but those of us that can share our stories without risking our own security or wellbeing should in my opinion definitely do so. So here I am, still speaking up.
During the filming, there was very little contact between most of the participants. I met some of the other women once or twice, but there are others that I still haven‘t met in person.
The big picture – the similarities and the differences, the connections and the diversity – didn‘t become apparent to me until I saw the final product. The film really is a mosaic, piecing together all the different voices and gathering the common threads that run through our lived experiences.
Pattern thinking
I‘ve always been a pattern thinker. Patterns jump at me from all directions, ranging from number plates on cars to the lines I try to avoid when walking on patterned floors or sidewalks. There are patterns in words and language, rhythms in breathing and heartbeat, repetitions in peoples behaviour.
Since my diagnosis I‘ve learned to recognize many autistic patterns in myself. One of them is not being able to visualize events or creations until the moment they arrive. For instance I now know that what I always judged as a serious procrastination issue is not laziness but the inability to see myself in a situation until just before it happens. Therefore, looking back I‘m not surprised that it took me some months after the release of „Seeing the Unseen“ to begin to heal from my impostor syndrome and to see where my story belonged within the mosaic.
The fact is that while women on the spectrum are all unique individuals, our stories are so alarmingly similar in so many ways. To be able to recognize our patterns better, people need to see and study all the different aspects of belonging on the spectrum.
At the core of the autistic reality there is no high or low functioning, that distinction is just another superficial label we have been made to wear by a society that resists looking deeper. At the center there is autism, a particular neurotype that governs all of our being. How others seek to classify us is another story completely.
Neurokin
I sometimes describe the experience of late diagnosis as discovering a large branch of your family tree that you didn‘t know existed. I feel I have found a lot of new relatives, brilliantly described as „neurokin“ within the autistic community. I am very grateful for that discovery.
The majority of these new „relatives“ are women who share the experience of late diagnosis. Being a pattern thinker, I feel confident to outline the following picture of my newfound „sisters“:
-They are ageless. The younger possess an old wisdom and the older have childlike traits.
-They are highly creative and artistic, each in their unique way. The musicians present a very individual voice and personal message. So do the visual artists and craftswomen, there is usually a clear and deep meaning behind their work. The writers have a distinct relationship with words. Many express themselves through several different media, alternating music, images, movements and words, or using them all at once – again on a very personal level.
-They are deeply compassionate and generous, with varying loads of difficult social experience in their backpacks. Most of them are or have been healing from trauma. Some have discovered their autism through such efforts, others through their children on the spectrum.
-They are at the same time admirably resilient, not so much by choice as by need, and extremely sensitive. Daily life requires navigating between these two extremes, putting on a brave face and completing challenging tasks while also trying to compensate their needs through any means available.
-They are full of contrasts. Acutely intelligent yet struggling with daily functioning. Deeply trusting yet always on guard. They have boxes full of skills and yet somehow continually seem to bring the wrong box to any given occasion and end up having to improvise on the spot, like someone having to catch fish with hammer and nails.
A red thread
The autistic women I‘ve gotten to know since my diagnosis are clever, humorous, strong, creative and resourceful. Most struggle with boundaries, after a lifetime of masking their autism in order to comply with the demands of a society not built to meet their needs.
The fraying of boundaries applies to both mind and body. Many of these women have developed autoimmune conditions that speak directly to the body‘s ability to defend itself against the environment. The physical surfaces interacting with the outer world, such as the respiratory system, the skin and not least the digestive tract are common areas of concern.
I think it‘s safe to say that autistic women have extensive boundary issues, both on the physical and personal levels. The body‘s immune response eventually spirals out of control and starts attacking its own tissues, and so does our masking. The suppression of our autistic traits sooner or later turns against us, draining our energy and making us ill.
Many struggle with any kind of authority, finding it increasingly difficult to stand up for themselves and advocate their needs, in direct proportions to the power of the „opponent“. Doctors visits may very well sit at the top of that list.
I don‘t think I‘ve ever met a late diagnosed autistic woman (or even an early diagnosed one) that hasn‘t survived some sort of bullying or abuse. That common denominator in our lives is frighteningly obvious and strikingly alarming.
The abusers may have been children or teachers at school, parents or relatives, partners, spouses or colleagues. The severity of these experiences may differ (although all human experience is of course relative to each of us) but they are there. They are most definitely there and have fundamentally shaped our existence.
Maybe this will change in the future, when girls and women will hopefully be diagnosed – and assisted – earlier on in their lives, but for my sisters on the spectrum today there is a very visible red thread of painful and often dangerous experiences that runs through our lives.
The thin line between recognizing vulnerability and victim blaming
The subject of autistic women and abuse is complicated, as the line between trying to explain why so many of us share this experience and outright victim blaming is extremely narrow.
The distance from saying that our autistic nature makes us vulnerable to abuse to saying that the abuse is our own fault is very short. This must be kept in mind at all times when discussing the matter.
So when addressing our vulnerability it is imperative to always be very clear that the same goes for autistic females as for everyone else: violence is never the victim‘s fault, always the abuser‘s.
That being said, there is most definitely a pattern when it comes to autistic women, bullying and abuse. Abusive people and predators do seem to sense some sort of attraction towards us, whatever the cause may be.
This pattern clearly suggests that autistic girls and women need both guidance and protection, as we can read about in books and articles on the subject, on topics such as safe people and safe social relations.
I‘ve thought about this a lot myself. What is it about us that allows ill-intentioned people to single us out?
Among the answers I have found are the following:
We struggle with boundaries from an early age and all through life. This struggle takes place on many different fronts and levels.
Studies of young children (around 3 years of age) that look at their understanding of the concept of ownership, whether practically or verbally, suggest that autistic children present a different profile to that of the general population. While non-autistic children show possessiveness and cling to toys that they consider theirs, the autistic ones more readily give up their possessions to others. Non-autistics also show more preference to things that seem to have belonged to prominent characters (i.e. the honey jar belonging to Winnie the Pooh), whereas the autistic children see less value in the previous ownership than in the general usefulness of the object.
Most of us begin practising social interactions with our peers at a very early age, in the daycare environment. A lot of that interaction involves establishing hierarchy, deciding who owns what, who shares what and who is the leader of the pack. Children with a different view of ownership, like the autistics who readily part with toys to share them with others and place little value on the popularity of said object, approach the game from a different perspective than that of the majority.
Their approach may leave them without toys, once the more possessive kids have had their pick. They may not share the group‘s instinct to establish ownership at all, leading to their boundaries being less defined then those of the other children.
But are they really less defined, or maybe just different?
Most of the traits that define autism are described by the neurotypical world as defective. Our way of being is defined as an inability to perform in a non-autistic manner. Some of those descriptions, such as in the case of the Double Empathy Problem, are now being revised and redefined. Rather than saying outright that autistic communication is defective, we now describe it as different. Different, not less. Maybe our boundaries are there, just in a different way than in neurotypicals.
I myself have often approached interpersonal trust by sharing intimate information with people in an attempt to invite confidentiality. Most people would probably interpret such behaviour as oversharing and a lack of boundaries, while the logic in my head tells me that being made a keeper of some of my secrets will oblige the entrusted person to protect them, and by extension protect me. If I invite you into my circle of trust, surely you must behave in a trustworthy manner?
Experience has repeatedly taught me that this is not nearly always the case. Many times people don‘t seem to feel any need to join in my defense, quite the opposite, and end up using the information against me. Nevertheless I tend to repeat this approach continually, owing to another possible explanation of autistic vulnerability, namely:
Not transferring experience across situations.
One of the known factors behind the vulnerability of autistic people is the fact that we don‘t transfer experiences across different situations as readily as the general population. This means that our learning from experience may be limited to certain situations or places and not generalized enough to protect us when we find ourselves in a new or different environment.
In other words, something or someone that we recognize as threatening in one set of circumstances may appear innocent in another. The joke about never repeating a mistake twice, but rather five or six times just to be sure rings very true in our ears.
There seem to be loopholes in our functioning skills that repeatedly expose themselves anytime they find the chance, no matter how often we have been through that particular mistake before, regardless of how deeply these mistakes have hurt us or kept us sleepless at night.
There are also studies that show that „Neurotypical peers are less willing to interact with those with autism“.
This would imply that autistics are met with exclusion as a rule rather than the exception. Being excluded and not understood inevitably leads to feelings of isolation and loneliness. Not belonging to a social circle of friends is a vulnerable position in itself, especially if the role of the lone wolf is not your chosen situation but the result of rejection by your peers.
In this situation, we are obvious targets for predators, especially because of how deeply we relate to their modum operandi of playing the outcast. „Nobody understands me but you“ can sound very familiar to us and make us want to help the person in question very passionately, even if it goes against the warnings of parents or authority figures.
We learn early on to mask or camouflage our autism in order to avoid rejection
Masking has a mixed meaning for autistic people. While most of us agree that it helps us interact with the outer world, at least in the short run, this camouflaging almost always becomes problematic in the long run. It blurs our sense of self and drains much of our already limited energy resources. This is evident in the fact that we lose the ability to mask when our energy is depleted.
Learning to unmask is therefore one of the tasks that face us after receiving our autism diagnosis, deciding when this strategy can be of use and when it becomes harmful.
Those of us who have gone through decades of our life before diagnosis are all too familiar with the experience of chronic gaslighting, whether intentional or not. The severity of the gaslighting varies, but we have all been met with a denial of our own instincts.
Society is constantly telling us that our reactions are wrong and our point of view incorrect, interpreting our honesty as harshness while at the same time encrypting its own message to us rather than communicating clearly. Most of the time, the misunderstandings and conflicts that result are deemed to be our fault, as our understanding differs from that of the majority.
On top of this miscommunication that can make us full of self doubt and thereby reliant on others, sits an educational and rehabilitation system based on ableist foundations. This is the system that provides early intervention for those of us who are diagnosed young, subjecting them to:
Misguided normalizing „interventions“.
Behavioral therapies and social conditioning based on training people on the spectrum to suppress their autistic traits in order to conform to the demands of others can have a very real and damaging effect on our already weak boundaries. Being forced to play along with social interactions on the terms of those around us „just because“ directly teaches us to ignore our own instincts and comply without question with the wishes of others. In other words, bend to the will of others even if we don‘t understand why.
This is a very real issue that we have to deal with sooner rather than later. What is the purpose of this kind of interventions in the first place, if they are not accompanied by at least as much accommodation on behalf of our neurotypical counterparts? Why does the minority have to bend it self to fit the mold of the majority?
There should be room for diversity and we should all be allowed to build on our individual strengths in order to grow and flourish. Playing a role you don‘t fully understand or believe in can hardly be the path to success.
Autism is not a deficiency that needs to be concealed, it is an identity that should be reinforced and supported on its own terms.
Sensory differences and the autistic perspective can also play a part in our vulnerability.
One of the amazing autistic women I‘ve gotten to know after discovering my autism once told me that she could never believe that anyone would ever want to hurt anybody else. Her synaesthesia is so strong that she feels physical pain when she sees others hurting. So her logical autistic brain concluded that the idea of hurting another person was in itself impossible, as one would only hurt oneself in the process. Needless to say, she has since learned that this is not a common point of view, but a very autistic peculiarity that can easily expose us to the abuse of others. If you never expect anyone to willingly hurt you, you are unlikely to put up defenses.
This autistic point of view applies to many other aspects of social interaction. The tendency to always tell the truth and expect others to do the same affects us greatly.
The belief that others think in the same way as we do, while the opposite is usually true, can lead to innumerable misunderstandings, confusions and conflicts. Instinctively assuming that every person we meet is honest and truthful is an obvious Achilles‘ heel.
Implications
This is in no way an exhaustive list of the possible reasons behind our vulnerability as autistic females but rather a scratch at the surface. An attempt at some input into this very important discussion which hopefully is only just beginning and will eventually lead to a better outlook for autistic women and girls.
We need to be very aware of these red threads in our common lived experience as they are a matter of health, safety and quality of life for all the autistic girls and women out there. These issues are not our fault and do not make us culpable in the abuse we encounter. We should instead use them to teach autistics and neurotypicals about one another and use them as tools for the educational, social and health systems to support and empower autistics in finding our own way in life.
To be able to educate autistic women on these issues and actively protect them, we must first be able to see them and enable them to receive both a correct diagnosis and adequate support.
This has to begin at a very young age. Autistic females need to learn about human nature outside the autistic spectrum, not by forcing us to imitate it, but by increasing our literacy on human diversity in general.
The society as a whole also needs to learn more about us, to see and respect our peculiarities and accept and meet our needs even if they differ from the established norm.
Mutual translation
We need to translate each others language for one another. Just as you have translated „Seeing the Unseen“ in order to understand our Icelandic, society needs to translate the different forms of human expression so that we can all interact better.
This is why I‘m so grateful for your effort here today. We autistics may exist as a minority in our respective countries, but internationally our neurokin is large and growing. We have begun to find each other and connect.
I mentioned the Double Empathy Problem before, which states that since the autistic point of view is different from that of non-autistic people, it contributes to to a different communication style. The autistic communication style should not be deemed less or deficient, but different. The result is never the less that autistics have trouble interacting with non-autistics, and vice versa. Each group finds it easy to connect to other people with similar neurologies.
I believe that the increased connection between autistic people all over the world is contributing to an increased sense of self worth as well as a growing collective courage to speak up about our experience.
The more autistics that share their voice, the broader and deeper the picture that the world sees of our reality. The bigger the choir, the richer the harmonies.
Thank you again for allowing the voices of 17 Icelandic autistic women to be heard and understood in your country. I‘m certain that we have many neurological sisters and relatives in Lithuania, whether they are seen and accomodated or still unseen like we have been before.
Please add your voices to ours.