My experience with autism

Before reading… This is my very personal story about living with and understanding autism. Of course everyone’s experience is different, how people find out, how their environment reacts, how they find comfort in their diagnosis and how they try to make their own lives more comfortable, everyone finds different things work well. In this article I try to explore my own experiences, beginning in 2010 when the internet was very different and awareness about autism was…, well also very different. In my story I use the names Asperger’s and Aspies, as these were the words used back in the day. These days, these names are understandably avoided due to the negative association of Hans Asperger’s involvement with the euthanasia programme of the Nazi regime in Austria. The current accepted name is ‘Autism Spectrum Disorder’ (ASD). I have used Aperger’s and Aspies in the text referring to the time period when it was still used, and use ASD for current references. I have also used the terms afab (assigned female at birth) and amab (assigned male at birth) which are used to describe the biological sex a child was assigned to at birth. These types of terms have been criticised as they continue dividing sex into two binaries, male and female, and thereby ignoring other categories of sex, including intersex people. They also focus on the genitals of babies, which is obviously creepy. As I am not sure about another acceptable way of saying this (there is currently a lot of debate in the queer world), I have decided to use these terms for now, with the possibility I change them in the future.

Diagnosis

I have missed the opportunity for getting a diagnosis, or at least a test, a few times in my life. As a child I exhibited the typical traits that now would be more quickly linked to autism, but back then autism was mostly something diagnosed in amab kids, so teachers simply did not look out for these traits and I was probably quite good at masking (adapting my behaviour to the expected norms). The one situation I remember very well is that my school had sent a letter to my parents saying that I should be tested for fine and gross motor skills as I was not able to play most sports I had to learn at school, particularly rope skipping and basketball (I cannot dribble). My dad answered he was never able to rope skip and he turned out alright (having a successful career in engineering).

My dad finally got his diagnosis at work just before his retirement, back in the day it was called Asperger’s. The diagnosis was the result of some problems my dad had with some of his colleagues, him being very old school and not being able to understand the younger generations. He never mentioned it until my mother at some point bluntly said “I think you are autistic”, then he explained his diagnosis. It was never talked about after. I don’t fully remember, but I think my mother may have questioned if I as well might have autism.

Little me in the eighties, a bit overwhelmed by the world

Books

I started researching Asperger’s syndrome more (now people prefer to talk about autism or the autism spectrum instead of Asperger’s), but what I read did not inspire me to get a diagnosis as the diagnostic tests for afab people just didn’t exist yet unless you were on a more extreme (less masked) part of the spectrum. Back then (2010), there was still not a lot of information available, although there were some online forums, and I was able to find some books on the subject. A book that was never translated to English that helped me a lot is ‘Women and girls with Asperger’s’ by Tony Attwood. This book has an image of a little girl in a plastic inflatable ball as a representation of how it feels being on the spectrum (as if you are surrounded by an insulating ball cutting you off from the world around you). I read books by Tony Attwood and Temple Grandin, but preferred the ones by Attwood as they were easier to read. Attwood does not write from own experience though (except about his experience with people with Aspergers) and there’s quite a bit of ‘othering’ happening in his books. Grandin has an interesting and empowering story, specifically showing that autistic traits are not necessarily bad, but can be useful in society. This is a very capitalistic way of looking at a person’s worth, but I think this is just how some people think. This capitalistic view also shines through when people talk about high-functioning autism or high-intelligence autism.

When reading about Asperger’s, I remember having the feeling often to be ‘talked about’, instead of reading about other people’s personal experiences. One thing that particularly annoyed me is the phrase ‘ A person with Asperger’s learns how to fake interest/emotions/etc… in order to ‘pass’ as neurotypical in social situations’. This assumes quite a lot of different things that are pretty judgemental. First it implies some kind of maliciousness in the ‘faking’, as if the reactions and experiences itself are fake. It also implies someone does not have the ability to learn certain things, for example with the help of a body language course, and experiences through friendships and relationships. Something that is often told about people with autism is that they lack empathy. This is not true, oftentimes people feel really deeply with other people if they can relate. I have been called ‘cold’ and ‘strong’ (meaning the same thing) a lot in my life, while I also have a strong sense of empathy. An example was when the brother of a friend of mine died, the brother lived abroad and they hadn’t seen each other in a while. I did not understand how his death would influence her and later she told me I had hurt her by being really cold. I had not understood the situation well, and had not shown the empathy that I could have felt if I had understood it correctly. One of the reasons is not knowing how it feels like to have a sibling, something I can relate to more now I have had friendships that are close and long lasting. This wasn’t an attempt of being malicious on my end, just a misinterpretation. It is also not so that if I had understood the situation, my empathy would be ‘fake’.

Body language training

An aspect that can be challenging to people with autism is reading the body language of other people, ‘reading the room’. Something that has helped me a lot is a simple introductory course in Body Language training which I took in 2009. Here I was introduced to the work by Paul Ekman, the famous psychologist who did a lot of work on the so-called ‘micro expressions’. There is a really nice series based on his work/life called ‘Lie to me’. Watching Lie to me is very informative about the whole theory of micro expressions and body language. Although I did buy Ekman’s books, I found them very dense and did not enjoy reading them. I did practice a bit with the online training application where you need to identify the emotions on someone’s face within seconds, very informative!!

Learning about the emotions and trauma

Around this time I also learned a lot about emotions with the book Emotional intelligence by David Goleman. This was for me a first understanding in what we now would call trauma reactions (this language is not used in the book). Two takeaways from this book, still present for me 15+years after I read it, is that language can ‘disappear’ in times of emotional distress, and that the brain reacts in an instant when triggered by a certain person/situation. Of course this was just the beginning of my learning journey and many books about trauma and emotions have followed since.

Brain training

Something that has helped me a lot as well is learning about the brain and ‘training the brain’. I did my very first online course which was called ‘Train your brain’, by a Dutch guy (I don’t remember his name). It consisted of several modules and helped people to focus and work methodologically (unfortunately I never was the very structured type of person with autism). This was very useful, I still have a cd with music that helps you focus (now there’s a lot of that available, but then this was quite unique), there were exercises to see/feel into certain situations etc… For example, one of the exercises was to walk home from work a different route every day. This is something that sounds silly but it helped me to explore my limits/uncomfortableness to improvise and not do exactly the same thing every day (something that was very much linked to my OCD as well).

Another really good thing around brain training I did was what was described in the book Think like Da Vinci by Michael Gelb. Everything about this book is great, it describes different practices that Leonardo Da Vinci did that helps us stay in touch with ourselves and develop our different senses. It is through the inspiration of this book that I started training in tea, drawing, visiting an Alexander technique teacher, practicing using my other hand much more etc… I feel that challenging how my brain works or tends to work has been really beneficial for me, to rewire my brain to be able to be at ease in a broader range of experiences.

Highly sensitive people

I have loved reading the books by Elain Aron on high sensitivity, and always found it quite striking that there is such a big overlap between the presentation of high sensitivity and autism. These are the questions Aron asks about being highly sensitive:

Is this you?

• Are you easily overwhelmed by such things as bright lights, strong smells, coarse fabrics, or sirens nearby?
• Do you get rattled when you have a lot to do in a short amount of time?
• Do you need to withdraw during busy days, into bed or a darkened room or some other place where you can have privacy and relief from the situation?
• Do you make it a high priority to arrange your life to avoid upsetting or overwhelming situations?
• Do you notice or enjoy delicate or fine scents, tastes, sounds, or works of art?
• Do you have a rich and complex inner life?
• When you were a child, did your parents or teachers see you as sensitive or shy?

When compared with a list of common challenges an autistic person faces (also check the list by Samantha Craft here):

• Social awkwardness
• Taking things literally
• Challenges making or keeping friends
• Sensory issues
• Avoidance of eye contact
• Lack of adherence to social rules
• Very strong and particular interests
• Difficulty with change

We can see a lot of overlap in the social behaviours and sensitivities. Also notice how the language is different in the two writings, the part on Highly sensitive people being very gentle and poetic, the traits of autism being very negative and demeaning (this is a random list from the internet using search words ‘autism traits’). There seems to be less stigma on being highly sensitive, and people who are on the autism spectrum can identify as highly sensitive first.

The links with trauma

When I started reading and understanding more about developmental trauma, I again saw lots of similarities with autism. Possible traits of people with developmental trauma are hypervigilance and inexplicable fear, emotional regulation difficulties and feeling isolated and disconnected, which all in some way can be translated into the traits seen in people with autism. It is known that ptsd can sometimes mimic autism in children (read here for example and here for a comparison of Childhood ptsd traits and autism traits, again notice here the different tone when talking about the two different presentations, here is another interesting read).

It is certainly true that people with autism are more prone to being traumatised, often by overwhelming situations that are not recognised as such by their neurotypical caretakers. It has also been speculated that ptsd might present differently in people with autism, resulting in the trauma being undiagnosed or simply seen as a presentation of their autism. At this moment it is still unclear which types of treatment for coping with trauma are effective for people, and especially children with autism. Most of the treatment plans involve at least some verbal engagement and education about what trauma is, which are less able to reach children with autism, who are often less verbal. Here is a really interesting write up about this topic.

Something that is quite annoying in the information that is currently available is the focus on children. It is as if the possibility that an adult lives with developmental trauma (or cPTSD) is seen as less important, and when reading the literature you need to link the dots to get a clearer picture as to how the two presentations overlap and reinforce each other if both are present.

OCD

One of the comorbidities of autism is, next to anxiety, depression and many other conditions, OCD or obsessive compulsive behaviour. I probably started having OCD when I was quite small, maybe 5 or 6 years old. At the time, it revolved around my stuffed animal bunny, who had to sit in the hallway while I was at school. It developed into full blown OCD when I was a little bit older, and my whole day was an endless ritual where every little detail had to be exactly the same every day. The only reason to change slight details was having a ‘bad’ day, and changing something would break the curse of that day. This evolved into restricting my food intake by choosing to be a vegetarian as a 17year old and the appearance of intrusive thoughts. These thoughts still come to me in times of stress and they are a sign for me to take things easier. Again, as with autism, I never got a formal diagnosis of OCD, as by the time I was able to see it as something not typical, it was mostly reduced to intrusive thoughts, which I learned to work with with herbs and other practices. Here is an interesting read on the co-occurrence of OCD and autism.

Hyperacusis

Hyperacusis is actually one of the first conditions that is very much linked to an autism diagnosis, that was actually confirmed by a ENT (HURRAY!). This made me see my life from this perspective and a lot of it made so much more sense now. I remember crying when a motorbike passed by the house as a kid. As a teenager I was peer pressured into going to a club on a school trip in Lloret de Mar, so I told the security guy I was only 15 (which I was) and he refused to let me in (win!) so I spent the night by myself in our hotel room which I much preferred over a loud intimidating space . The only time I actually enjoyed going out was when I discovered the folk scene in Brussels when I was 26, where the music is always live and not too loud. An aspect of hyperacusis that is less well known, is the impression that your hearing is bad, especially in social or loud situations. This was what made me go to the ENT in the first place, I was walking with my friend on a busy road, my friend was much shorter than I was and I simply could not understand what she was saying. It turned out my hearing was pretty perfect, my brain simply cannot distinguish different sounds when there’s many at the same time, and everything sounds loud. Other symptoms of hyperacusis I have experienced is physical pain in the ear with loud sounds and distorted sounds when I have been exposed to certain sounds for too much (voices and other sounds may sound tinny and metallic with an echo), as well as tinnitus (which never lasts) and feeling nauseous because of sounds.

Quiet

Being quiet and less verbal as a child are autism traits that were recognised in me, and I have many school reports saying that I am too quiet and needed to speak more. I have often been perceived as shy as well. I am happy to own that.

Problems with social interactions

Having difficulties with social interactions is part of the autism profile. The difficulty in reading another person’s energy, recognising one’s own feelings, getting overwhelmed when triggered, and general social anxiety are all part of this, and are more of a problem when under pressure and stress. I feel it’s important to understand that oftentime people with autism can be really good with these as well, and can be excellent listeners, teachers and healers in a setting of their own choosing. Learning about emotions, boundaries, relationships, open communication etc is essential for everyone, but especially for people with autism. I feel that being able to ask questions like ‘what do you mean with that’ or ‘just so I understand you correctly …’ can be really enlightening. Being a non-native English speaker makes asking questions easier though, I don’t know how it would be perceived otherwise.

Autism and queerness

Being queer is almost part of the autism presentation (read this for example) and I remember it being part of an autism test I did online a few tears ago. A lot of queers I know identify as autistic. When about 4–5% of the general population are part of the LGBTQ+ community, in the autistic population 15–35% identify as gay, lesbian or bi. Rates of people being transgender and nonbinary are also two to three times higher in the autistic population. I have known about being gay since I was about 16, but made the choice not to come out then (my mother’s evil eye had something to do with that) and came out only later in life. In general I started relationships quite late, I met my first boyfriend at 19.

One of the reasons why people with autism are thought to be so queer is that they’re are less inclined to follow the social norms and go their own way. I can definitely see this being true and I wish my home situation was more welcoming to this than I felt it was. I had so many issues with my mother already, I found it difficult to go against her even more.

What is a spectrum

Autism is a spectrum condition with a sharing of certain difficulties, but being influenced by them in different ways. Some people with autism also have mental health conditions or other physical conditions, meaning people need different levels and types of support. I think it’s important to question what we see as a spectrum, oftentime it somthing that is represented as a line in between two extremes. I think it’s helpful to see a spectrum as a cloud rather than a line. There are so many factors that influence people and their autism presentation, level of passing, other mental health issues, other physical conditions, the intersections with queerness, race, disability etc… that it is very difficult to think of the autism spectrum as simply a line in between most neurotypical and most neurodiverse. It might be possible to visualise where a person is on this specific line for each separate trait (but then where do you stop? What traits do you take in consideration?), but I think that visualising the spectrum as a dynamic multi dimensional cloud is much more useful and correct. Why dynamic? Because people change, learn, are better able to cope with their neurodiversity depending on their surroundings being optimal (for them) or not, and I think seeing autism as something static and unchanging is not true to reality. It might be true that autism stays with us for life, but our relationship to our autism, our challenges, our feeling of being accepted changes with time. Spending time with other people on the spectrum certainly changes this relationship. I remember vividly that at queer camp someone said at the beginning of a group walk, ‘I will join, but I’ll listen to my music so don’t talk to me’. That felt so empowered to me and has been an inspiration to me since.

A little extra: an archetype of the autistic person?

This is a discussion based on the description of the Metal element in the book Chinese medicine works Clinical Handbook by Beinfield and Korngold, which is based on the five elements theory. I include it here as I find the archetype of metal very similar to the profile of autism. It’s really interesting to think about how what in our current society is thought of as a ‘condition’, something that is atypical, has been integrated in a system such as the 5 elements of Chinese medicine.

The Metal element in the Psyche, when in balance, is that part of us that is capable of working in a methodical and self-disciplined way. It handles a problem calmly and step by step with an eye for detail. It is very loyal and has an urge to honour things with great care. It wants to do the job well, but don’t care that much on what others think about it as it is quite reserved. It is the part of us that feels when boundaries are crossed, or when our principles are violated, and that wants to stand up for them.

Metal types tend to have difficulty with control, disappointment, emotional expression, intimacy, authority, relativity, disorder and spontaneity. They need to know exactly what is going to happen before they start something. They can become preoccupied with personal and emotional limits, distinctions, rules, and have an unrealistic faith in authority (leading to disillusion). They can become insecure and anxious about relationships and agreements which can result in a stiffness and resistance, manifesting as restricted breathing, constipation, tightness in neck and shoulders, tension in stomach, palpitations, hypersensitivity.

When Metal is in excess, the person becomes too much of a perfectionist. They hold on to their values too much and become prejudiced, dogmatic and self-righteous easily. They become indifferent to the people around them, and are very strict about how things should be done. They are perceived as cool and uptight people, having it their way is more important than the person they have a disagreement with.

When Metal is deficient, a person becomes sloppy, has a lot of self-pity, lacks self-discipline, becomes unable to finish tasks. The person complains easily, lacks conviction and procrastinates.

The archetype related to the Lungs is the Alchemist. For me, the alchemist is a personality that is very much in touch with the spiritual and is very focused on their path. They work in a precise and focused manner to achieve healing and wholeness. Their work is that of blending the material and the spiritual, seeing what is really going on and to bring wholeness to what or who they work with. They like to honour the cycles and traditions, and is very much aware of the ancestors doing this same work before them. I feel this is very much what can be the gift of people with autism who are drawn to the healing professions.