Author: hlidstaedverold

Vulnerability of Autistic Women in Society

/ hlidstaedverold / 2 Comments

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.

Breaking the stereotype of autism and Seeing the Unseen

/ hlidstaedverold / Leave a comment

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.

Why would I pretend to be autistic?

/ hlidstaedverold / 2 Comments

One of the common threads that run through the stories of women on the autism spectrum – many of whom receive their diagnosis late in life, often following a long and hard struggle to fit in – is that they are not believed, their diagnosis not accepted.

In many places it´s also difficult for women to receive a diagnosis due to prejudice among professionals, mainly owing to the strong male bias dominating the field of autistic studies ever since its first description.

Luckily, I have not experienced this firsthand. I´ve generally been met with good support and a positive attitude, not to mention the positive response this blog has received, as well as my willingness to tell my story in public. For that I am very grateful.

Sometimes I´ve even wondered if the disclosure of my diagnosis may have been a bit like when George Michael came out as gay – like, yeah, well, everyone knew that…

But anyhow, what people say to you isn´t always the same as what they say about you. As I have written about before, rumors and gossip incredibly often pass right by me, maybe as the result of avoiding small-talk. Which most of the time is just fine.

Am I maybe pretending to be autistic?

Apparently there are people out there who think I am.

After chewing on that fact for some time, I´ve decided that I am absolutely fine with that. As they say: what other people think about you is none of your business.

A woman´s journey towards an autism diagnosis is rarely short or straight. Which is precisely why I speak openly about mine. My preamble, my result and hopefully – sometime – my solution. Autism is not an obvious answer, there are very few who have the knowledge and even fewer who guide you in the right direction.

The journey to my diagnosis can be divided into a few sections. Going backwards from now, the shortest and most recent leg of the journey is the one starting with the first suspicion of being on the autism spectrum and ending with seeking, and receiving, a professional diagnosis.

Before that there was a longer period of awareness of the spectrum, learning from a parent´s perspective and doing my best to be a well-informed and supporting mom.

Before that there was a lifetime of different chapters, success mixed with distress, optimism and anxiety. All kinds of everything.

Individual

Adult diagnosis of autism is in my mind a very personal journey, initiated by each individual and on their own terms. A way to get to know yourself, learning how to deal with yourself, as well as other people. If and how we disclose our diagnoses will then decide if they also become a tool for other people to learn to interact with us.

I chose to speak openly about my diagnosis right from the start, which has a lot to do with my personal character, but also with my position in life at the time.

People often ask me what they should do in case they suspect that someone might be on the autism spectrum. Should they encourage them to seek a diagnosis? Point out this possibility? I’m not sure if there´s a simple answer to that question, a one-size-fits-all, as I´ve known of both good and bad experiences with pushing someone (an adult) to pursue an autism diagnosis.

My way of making people aware of the possibility of autism is to provide information. To tell stories and openly share my experience in the hope of opening some eyes. Not to try to correct people, fix them in any way or prove a point, but rather to widen the horizon and try to create more understanding. The strongest and most honest way to do that is in my opinion to use my own story. My point of view is only one in a million, but I am the owner of my own story and therefore have the right to share it.

On your own terms

My thoughts on whether to feel anything about other people´s opinions (if indeed they have any) can be summed up like this: An autism diagnosis is each individual´s matter, personal and privately owned. This is my diagnosis, it took me a long time to find it and I hold it very dear.

For me it was a puzzle that was missing, a screw that was loose. I can choose whether to talk about it or not, and would probably do much less of that if it didn´t form part of a bigger picture. The big picture of women and girls on the autism spectrum not being heard, lacking a voice.

In time I hope these lines that I am singing, in my own voice, will form part of a much bigger choir, in a tune much better known.

Middle aged woman learns communication

/ hlidstaedverold / Leave a comment

I am always learning. If I ever write an autobiography this will be the title.

I. Am. Always. Learning.

Even when I don´t want to learn, I learn. What else can I do, with eyes and ears endlessly registering everything around me?

But I also learn from experience. Oh, how I learn from experience. And oh, how hard and painful that can be. Some things I have to learn over and over again. But now I´m going to stop whining and do some good. Turn this into something useful.

Mirroring

Lately I´ve been absorbing everything I can about women on the autism spectrum. Naturally, being recently diagnosed on said spectrum myself. Fortunately, knowledge about this topic grows every day, as the female side of the spectrum is gradually receiving more attention.

One of the common threads that show up repeatedly is that women and girls on the spectrum mirror. We all learn through mirroring, everywhere a young learns from an older, whether we see it in a video of a kitten trying to wash like its mama, or in a child copying an older sibling.

Our brain is partly made up by mirror neurons, for example responsible for making us gag when other people throw up (sorry for the difficult reference, your mirror probably got triggered just by reading this).

Girls on the spectrum seem to depend on mirroring a lot, long into adulthood, especially in regards to social interaction. That mirroring isn´t always useful or helpful.

Listening by talking

Since people on the spectrum struggle with social interaction, especially the effortless flow of unspoken communication, we rely on all kinds of training wheels when learning to interact with others. Consciously or not. And then we ride on into life with those awkward contraptions poking out from our bikes well into adulthood. Even if they no longer offer any support and maybe even bump into other people. Even if we trip over them ourselves.

One of the things we seem to do, and can be very annoying to others, is trying to get other people to talk by speaking out ourselves. If I want to know something about you I will probably try to ask for it by dumping something on you about myself.

And then I wait for you to mirror

But there’s no guarantee that you will do that. Maybe you just want to get away from this talkative woman.

And if I really want to know what you have to say, I may just go on talking.

This is not very practical at all. And it’s also really embarrassing to realize that you’ve been carrying on like this your whole life. I´m so sorry, I meant well…

I have to push myself to even write this, I’ve been so ashamed of my constant talking and so often felt rejected because of it. But I am learning and have to get this off my chest in order to keep on going.

See there – I’m still dumping unsolicited information on you. But here you at least have the option to just stop reading 😉

To ask

I don’t know how often I’ve complained about never hearing about anything. Why doesn’t anyone tell me what’s going on?

A coworker is suddenly away for a whole semester, I only notice when he’s gone. People leave for travels I knew nothing about. Something important happens and I’m the last one to know. And so on and so forth. I don’t even hear rumors about myself.

I now know it’s because i don’t know how to ask. I’m not familiar with this aspect of small talk; asking others about their plans, what they dream of doing, what’s going on in their lives. I am interested and I do want to know, but I will have to learn how to ask for this information.

All too often I feel like the lovely Saga Norén, when she starts asking: “should we smalltalk or not?” And then starts off with something way too personal. “My period started today” “Are you two sleeping together?” I feel so stupid when I ask people about personal stuff.

But I am trying. Maybe I’ll start small, by reminding myself to ask the people around me how they’re doing. And focusing on listening instead of sharing.

Hopefully I’ll get there in the end.

But until then: how are you doing? Everything good?

Autism playlist

/ hlidstaedverold / 2 Comments

When the words to describe your feelings are hard to find, music – with or without lyrics – is a valuable form of expression. Lyrics and poems are for me an essential part of being. Music both grounds me and gives wings to my mind, all at the same time.

Escapes through the rhythm of words

This is one of the descriptions from Samantha Craft´s non-official checklist for Autism in females. I was so fascinated when I first read these words (and still am) that I almost had them tattooed on my forearm (still might). Hypnotised by their perfect capture of the meditative state brought on by words and rhythm. Mindfulness at its best.

Mixtape nerd

Some people “say it with flowers”. I go with music and lyrics. Below is a list of songs that help me describe the world as I see it through my Asperger’s glasses. In no particular order, some of the songs have been with me as long as I can remember, others came later. Some I still haven´t found, but may add them to the list if and when I do.

Human behavior – Björk

…There’s definitely definitely definitely no logic … and there is no map and a compass would’t help at all…

Do we need to discuss that any further? (She said, looking up from her scribbled map, self-help book, phrasebook).

When you are constantly memorising, sorting, comparing and trying to make sense of the way people think and react, you find out sooner or later that there´s definitely definitely definitely no logic in anything. At all. Just when you think you´ve mapped out the world correctly it suddenly turns upside down and you´re back at square one. With no 200$ for landing on GO.

Nevertheless, interacting with people is an intriguing puzzle you can hardly stay away from. S you don´t give up, but try again.

…Be ready be ready to get confused…

(p.s. In the official video Björk appears, among other things, in a space suit and inside a womb. Themes that also appear in I am a rock and Space oddity).

I am a rock – Simon and Garfunkel

… I am alone. Gazing from my window to the streets below on a freshly fallen silent shroud of snow … I am a rock, I am an island. I’ve built walls, a fortress deep and mighty that none may penetrate. I have no need of friendship, friendship causes pain … I have my books and my poetry to protect me … Hiding in my room, safe within my womb. I touch no one and no one touches me. I am a rock, I am an island …

This song is high school more or less, give or take a few years at each end. I had absolutely no understanding of the world or what it wanted of me. How many thousand hours did I spend alone in my room? A lifetime? Most of the time I felt like I was looking at the world from the outside in. I remember looking at a snowflake melting in my palm, at the top of the stairs outside my school, thinking; I melt snow, so I must exist.

This is the time when I did my best to perfect a bulletproof pokerface. To always act as if nothing, never let anything upset me. A bit like being lost in a big city not wanting to give away your foreignness by stopping to check the map. You just walk on, pretend you know where you´re going and hope to find a subway station before you´ve worn your feet to the knees. Because if you show any weakness you risk getting attacked. Just be a rock, an island, nothing to see, everything under control here…

The negative side of this kind of being is that if nothing bad can touch you, nothing good can either. If you feel no pain, can you feel joy? Maybe that´s the trick – instead of shutting everything out you have to pick and choose. Build a bridge to the mainland, slowly, carefully.

Don’t let me be misunderstood – Nina Simone

Genius Nina didn´t have it easy. Diagnosed bipolar, a rock-hard activist, repeatedly misunderstood and in fact marginalised. Violent, victim of violence. Ahead of her time in so many ways but also out of sync with the life around her. I´m pretty sure she would have ticked more than a few Autism boxes herself.

… I´m just a soul whose intentions are good, oh Lord please don´t let me be misunderstood …

I am actually quite articulate, good at explaining things and getting messages across. I´ve practised endlessly, learned from more mistakes than I can count and picked up more than a few useful tricks for my toolbox. Nevertheless the misunderstandings in my life are innumerable and I will probably just have to accept them as a constant companion as long as I´ll live. Sadly, the most distressing and painful misunderstandings always seem to occur in the most challenging situations. When all the programs in my head are running on full speed, all my senses are overstimulated and I´m trying to do be extra careful, doing my very very best. When the stakes are at their highest, the gaps begin to show and I loose sight of the wall I´m about to crash into.

…I try so very very hard…

Honesty – Billy Joel

This is my song, all the way. Love at first listening and always number one. An Autism anthem if there ever was one.

I´d rather you told me the hard truth then a comfortable lie.

… When I’m deep inside of me, don’t be too concerned. I won’t ask for nothing while I’m gone. But when I want sincerity tell me where else can I turn? ‘Cause you’re the one I depend upon …

…Honesty is such a lonely word, everyone is so untrue. Honesty is hardly ever heard, and mostly what I need from you…

Billy kept me alive when I was the rock and the island, all alone in my fortress. He allowed me to escape in the rhytm of words.

I just can´t get tired of this song. Please play it at my funeral.

True colors – Cyndi Lauper

All the colors of the rainbow are beautiful, and true. Accept your color, that´s why I love you.

Somehow this song always reminds me of autumn, the truest of all seasons. When nature shows us all its true colors. When the leaves, that have all been covered in green, finally show their inner nature. Become special, vulnerable and beautiful and say goodbye to us each one unique.

…You with the sad eyes, don’t be discouraged. Oh I realize it’s hard to take courage in a world full of people. You can lose sight of it all, and the darkness inside you can make you feel so small…

Space oddity – David Bowie

But of course, what else? And who better than David Bowie? He never really seemed to belong to this world and said goodbye under the sign of a black star. Timeless, eternal.

Space, aliens, astronauts – all well known Autistic themes.

Individuals on the spectrum often feel that they don´t understand humans and therefore must come from a different planet. Men are from Mars, women from Venus and Autistics from Pluto. We come in peace 🙂

Space is also a common special interest among people on the spectrum. My 10 year old son is at that stage right now, generously sharing all kinds of knowledge, from Yuri Gagarin to satellites, with me. When I ask him where he gets all this information, he smiles mischievously saying: “well, it ain´t a book”. Long live the internet.

Major Tom is floating in his own world, eating protein pills, trusting that his spaceship knows the way. His communication with Earth is a bit complicated, maybe more of a two-way monologue than a conversation.

…Can you hear me major Tom?…

Stúlkan/The girl – Todmobile

How perfect are these lyrics? Capture it completely. Maybe we now know why … lend me an ear!

The girl kissed a stone
And she kissed a car
The girl kissed a window
and she kissed the ground
where she lay counting airplanes
Don´t know why
I don´t know why
The girl hugged a tree
and she hugged a house
The girl hugged a book 
and she hugged her clothes
But she never 
never hugged her people
Don´t know why
I don´t know why
More - would you like to hear some more
about the girl and other things
something funny and amusing, would you?
More - would you like to hear some more
then lend me an ear
something funny and amusing I said
The girl looked out at the ocean
and she looked into a flower
The girl looked at a boat
and she looked at the sky
but she never
never looks you in the eye
Don´t know why
I don´t know why

More later…

A traveler on Earth

/ hlidstaedverold / Leave a comment

The photo shows a girl looking through a camera. The surroundings look desolated. If it weren’t for the gravel road, fence and electricity lines you could think that the girl was all alone in the world. That she had fallen from the sky, alone with the camera and her own shadow. A traveler on Earth.

Glimpses of clear sky are visible inbetween light and dark clouds. The weather seems tranquil, not too warm but not particularly cold either judging by the girl’s clothes. A thick sweater tucked into a pair of jeans. She seems rather careless about her appearance, there’s a stain on the front of her sweater from and she’s pulled back her hair back into an unruly ponytail. Her nails are bitten to the quick and if wasn’t for the camera you would see a squinted expression. She finds it difficult to look into the light. Her hands hold the camera in a careful grasp, as the shutter button is stiff and her fingers weak. The effort from taking a picture sometimes pushes them off center. There is tension in the girls’ body. She is making an effort, doing her best.

Pictures

It’s good to take pictures. The world is often so strange and hard to understand, she struggles to ‘get’ people and what’s going on. Pictures help.

She doesn’t always need a film to freeze the moment though, as her eyes notice everything and her brain registers every detail. Sometimes surroundings and situations – lines in the pavement, cars’ registrations numbers, the length of steps, knots in a wooden panel that look like eyes. She’s a finder, with a keen eye for patterns she quickly spots anything that stands out.

Sometimes her brain registers actions, her own or others’. Especially when she is upset. When she’s done something she shouldn’t or said something wrong. Strangely, the wrong things she says are usually something correct that she’s not supposed to say. Why not? Isn’t she supposed to tell the truth? Mysteries of this sort seem endless. There’s no way of predicting them, maybe it would be best to say nothing at all. If only that were possible.

Words

Some pictures are words, a text that describes a moment or event. Words form stories. It’s fun to play with words, because words tell the truth. Words on paper are what they pretend to be. That doesn’t seem to apply to spoken words, people often say one thing but mean another. She finds that very hard to understand.

They say she began to talk when she was one year old and hasn’t been quiet since. That’s probably true, as the struggle to stem the flow of words is one of her biggest challenges. To try to keep quiet and not speak all the time, about everything, to everybody, interrupting anyone and everyone.

There’s just such a short distance from her thoughts to her mouth. And her mind is in fast forward. She notices everything, compares, classifies and interprets, in attempts to find logic. Make herself understood. Understand others. There is an endless talk show going on in her head and sometimes she just forgets to turn off the sound. She notices when people stop listening, sees their gaze turn away and is always a little bit hurt although she really can’t stop. She has so much to say.

She also remembers a lot of words that she doesn’t understand. Words in a foreign language for example. Long and complex words that will wait in her brain until she finds their meaning, often by chance, often years later. When that happens, a picture gets attached to the word and both find their correct place in her catalog.

Asperger

The word ‘Asperger’ isn’t particularly long but it’s meanings are multiple. In fact the word is a name, a surname, as well as being used as a term to describe a syndrome on the autism spectrum.

Asperger didn’t exist in the catalog inside the girls’ brain. She would have known, as the layered significance of the word would have made it complex and as such, unforgettable. A word with a clear meaning, yet variable according to its use as well as depending on the individuals it’s used to describe.

The man Hans Asperger didn’t “have Asperger’s”. He was just one of the first people to link together various attributes of a certain group of people who had difficulties with social interaction while at the same time being rather intelligent.

Aspeger was in fact quite clever himself, but in a different way. He didn’t necessarily memorize the registration plates of all the cars in his neighborhood or store long foreign words in his brain to find their meaning later. And Asperger didn’t necessarily notice the girls, like this one, who were almost the same as everyone else, just not quite. Who learned some things at super-speed while struggling hard with others. Who hid their troubles carefully and pretended that nothing was wrong. Like this girl who did her best to fit in, with the aid of pictures and words and a brain that never stopped looking and categorizing and searching for patterns. Whose head was so full of words that they kept falling out of her mouth.

It took a long time for her to see that the word Asperger didn’t just apply to nerdy boys obsessed with computer games who don’t like the potatoes touching the meat. That it also applies to girls who hold on tight to their cameras like travelers fallen to the Earth and feel as though they’re just learning to speak like the natives. Act like the others. Appear normal.

Half a lifetime

Hans Asperger was around forty when he described the syndrome that bears his name. I was well past forty when I knew for certain that the lens through which I see the world was Asperger’s syndrome

I know a lot about Asperger’s syndrome, as well as many other things, but I definitely still have some revising to do on my ‘users manual’ and need to reevaluate quite a lot in my heart and mind. This blog will be part of that process.

I feel a bit awkward about not having found this out sooner. That I didn’t see how off center my camera often was. How different my point of view was often from that of other people. Systematically and unalterably. Firmly.

Yet I still think that the girl in the picture has done incredibly, incredibly, incredibly well. And I would like to reach back in time to hug the little traveler, pat her on the back and say: It’s going to be alright.