Life with Asperger’s - How understanding the condition helps me cope with daily life.

Life with Asperger’s - How understanding the condition helps me cope with daily life.

by Rebecca Bourhill

I am sitting in the playground, in the sandpit, about five years old, when classmates take the chance to strike and throw sand in my hair. All I hear are children laughing and taking the micky out of me while I am zoned out and in my own little world. I am not fully aware of what they are trying to do, until a teacher asks, “Do you realise what they are doing?” and then tells them to stop.

This is one of many occasions that I was targeted by other children. Unfortunately, teasing and bullying is a common occurrence for people with Autism level 1, formally known as Asperger’s. It’s as if they have an invisible sign on their forehead that says ‘bully me’.?Asperger’s is on the autism spectrum. It can be a lifechanging diagnosis, as it was with me. It is important to say that it is often not diagnosed in childhood and only picked up later in life. Therefore, if you are going to take steps to go to a special school and therapy, it is helpful to get it pointed out early.?If diagnosed at a young age, it will do away with the idea that there is something wrong with you, that you are defective, mad or bad, and that being an Aspie is just different.

Professor Tony Atwood is a British psychologist living in Brisbane, Australia, who specializes in Autism. He started his interest in the disorder in 1971 and has now been working in that field for the last 50 years. In 1992, he started a diagnostic and treatment clinic for children and adults that are on the spectrum. Professor Attwood has written many books, with his first,?‘Asperger’s: A Guide for Parents and Professionals’ ,?being translated into 25 different languages.?Professor Attwood is the first clinical psychologist that saw Asperger’s as not something that needs to be ‘fixed’ but seeing it as a gift.?

In my recent interview with him, he told me that being labelled is a discovery not a diagnosis, which immediately takes away from the negative association of getting the diagnosis. Often girls are diagnosed much later in life than boys, mostly after primary school and well into high school, because they are much better at camouflaging their social imperception. Boys on the other hand are more often diagnosed in primary school as the “Aspie” in them is more detectable. It took me four years to truly accept my late diagnosis of Asperger’s, however I have made progress by doing research into the condition and learning what I can do about it.??

Asperger’s was once classified as a condition on its own, however in more recent years it is no longer mentioned as an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM). It is now under the same roof as Autism Spectrum Disorder (ASD).?One in every four people that were diagnosed are women and now that has gone up to one in every two people diagnosed are women. Thankfully, more research is now being done about ASD in girls and women.

Autism affects boys and girls in similar ways however adaptions and reactions are different. Girls are neurologically better at processing social situations than boys. We will talk about this later in the article. Girls are more often sensory sensitive than boys and attached to this is a concern for higher anxiety levels than boys. In general, girls are front and centre of attention when it comes to bullying.

Asperger’s, is usually higher functioning than other disorders on the Autism Spectrum. It affects one in 44 children in school. Symptoms and severity range from high functioning to needing more support. Most people with this condition struggle socially (partly due to social imperception) and this leads to bullying and explains why schooling is so hard for children with Asperger’s, especially if they attend a normal school. I was diagnosed when I was 21 years old and spent most of my schooling in a mainstream school with only my first two years spent in a supported learning environment. My parents agreed for me to be home schooled for my final year which I did over two separate years to ease the burden and workload. This became unavoidable because of an increase in bullying and playground politics. Other symptoms of Asperger’s include inappropriate or odd behaviour, poor eye contact, obsessing over certain topics, sensory overload and literal interpretation of information.

When someone bullies a child with Asperger’s, they are not fully aware of the impact that might have on the person. Aspies, the term coined by people with Asperger’s for themselves, struggle to understand why they are being targeted and can spend their life deconstructing the reasons why they were the target. This means that we constantly replay the actions again and again in our minds, often leading to some form of PTSD (Post Traumatic Stress Disorder). This can go on for decades and makes it seem like the teasing and bullying happened yesterday.

Most of the time, bullying occurs is in high school when students are transitioning between childhood to adulthood. At this stage they take on what people say about them. Getting reassurance from peers is important to contradict ones belief of ‘I am not good enough’ or ‘I am stupid’, and any other ideas that the bullies have inserted into their belief system.?If an Aspie is bullied they will not be able to forgive and forget until they have closure and understand why the bullying happened.

Bullying leads to anxiety amongst school children and adults in most cases, whether you have Asperger’s or not., but for those with Asperger’s it is made a whole lot worse. At school and in the workplace, bullying can take place in many forms such as verbal, physical, social, and nowadays cyberbullying. They all contribute to making schooling more difficult and hence it is helpful to attend a school which is suited for dealing with such situations as well as the condition itself. Sadly, these schools are few and far between and home schooling may be the only option going forward.

90% of Aspies are bullied at school.?85% of children with Autism have anxiety-related disorders which is fuelled by the school environment and 20% of adults with the disorder also have anxiety. There have been many cases where the bullying these children receive at school is not just from other students but also from teachers, heads of schools and adults. Studies, such as the recent 2018 study entitled?‘Relationship between Bullying and Social Anxiety and Withdrawal among Adolescents’, have shown the link between social anxiety and bullying.

Poor social skills are a contributing factor for social anxiety and are a core feature of the disorder. I was a victim of both student to student bullying and teacher to student bullying. Both on the playground and in the classroom. I was uncertain where to settle due to the fear of being rejected and my teenage years was a phase where there were a lot of ‘Playground Politics‘. A library can be a lifesaver for an Aspies during break as it is a quiet space and not many people. I was told many-a-time that I could not sit with certain groups because they found me irritating.?

Children with ASD are daunted by the idea of having to socialize because of their lack of social skills and inability to identify social queues. One can see why there would be a link between social anxiety and bullying purely because Aspies struggle with the idea of being in a group.?It has been shown that people with Asperger’s who partake in team sports are more likely to have less bullying than those who do not because they can then be seen as part of a team. Girls are also apparently a lot better at sports than boys are, as their motor co-ordination is better.?

In my interview, Professor Attwood said it is a good idea to find a mentor who is able to help you both in personal life and in your career to guide you and explain the office politics and personalities of a workplace. As for personal life, a mentor can guide and direct you on how to navigate situations in a social setting and beyond. Children with Asperger’s, as well as adults with the disorder, have a constant struggle with people understanding their behaviour. On many occasions I have read and seen children being misunderstood and put on intervention for a reason that is clearly a trait of Autism.

Unfortunately, for those who are diagnosed late, like me, will not understand why these interventions happen until much later, thinking the whole time they are like other people that have a neurotypical brain. This happened to me when I was put on behaviour report in primary school, and nobody could tell me why. Nobody took the time to explain to me then and still wonder about it to this day. Children at school spend so much ‘brain power’ trying to socialize that their grades go down due to not being able to focus on schoolwork. We don’t like to get things wrong so you can imagine that not doing well academically is not encouraging.

Another factor which prevents a child from socializing on the playground or in a classroom during group work, or even at home, is sensory overload or noise sensitivity. Sensory overload can fall into many categories from light to feeling, to touch and smell. I struggle in social situations at the age of 25 with noise overload. For me to deal with my noise sensitivity at the age of seven, I would take myself out of a classroom and cover my ears with my hands. In later years, I would remain in the classroom but still block my ears. As an adult, noise sensitivity does heighten my anxiety levels and I find that taking a short walk out of a space where there is a loud noise gives me a quick reprieve before going back inside. After a few hours of socializing, especially in a small space, I am exhausted. It feels as if I have run a social marathon. With sensory overload, following a storyline in a group or social gathering is very difficult, especially if there is a lot going on because you are constantly distracted by other things such as conversations, music and movement.

Social anxiety and noise sensitivity are both factors which take a child or adult out of a social situation making it even harder to maintain a conversation or improve social skills. Another reason to take oneself out of a situation is to remove the risk of being pointed out. Bullying makes one even more likely to be a victim of social anxiety because of the fear of being rejected when interacting. The Journal of Autism and Developmental Disorders recently stated that three percent of the adults with Autism also have a social phobia. In desperation to reduce anxiety and racing thoughts, Aspies may turn to alcohol and marijuana and eventually end up in an addiction with harder substances because they find it easier to socialize and calm their mind when they are intoxicated. On a podcast by Professor Attwood, he mentioned that one in four people in a rehab centre is on the Autism Spectrum.

75% to 85% of those with ASD are prone to feeling sad because of clinical depression. Another strong emotion Aspies struggle with is anger, often a cover up to depression. If we look at what is causing the anger, it can be underlying anxiety of not being able to cope with day to day emotions. This is true with men and women, children, and adults. If you don’t have the opportunity to express your emotions as a child, anger becomes something that plays a part in adolescence and adulthood, because nobody listened to your true emotional needs. It is totally normal to be angry when you feel misunderstood or not listened to, and this is often the case with Autistic people because others don’t know how to communicate effectively with them. It can be draining for both parties involved.

Another reason for people with Autism to withdraw from a toxic situation, Professor Attwood argues, is that it is a protection mechanism. Aspies struggle to be with others that who might be in a bad place because we tend to take on other people’s emotions and get upset ourselves. We are sensitive to negative vibes.

As I have mentioned above, Autism affects men and women differently and it is said that it is more difficult to diagnose girls than boys because girls are so good at hiding it.?They are also more socially advanced and able to relate and mimic others. Professor Attwood talks about ‘the social chameleon’: This, he says, is a characteristic which helps women deal with social situations where they ‘mimic others in the group so well that other people don’t notice that they are different. The problem with this is that, there is denial about who “you” really are because they become so good at “faking it”. It causes exhaustion. It is like being on stage the whole time following a script trying to be someone else. They fear that the mask they are putting up may come down and the true person will come out.’ Professor Attwood adds that the chameleon will cause anxiety as well because each day is a performance, and you are concerned about letting the mask come down and making a mistake. Often an Aspie will go home and do a ‘Social Autopsy’ and deconstruct the event to try and take away the lessons from the day.?There is often also depression due to low self-esteem.

Everyone has their own personal experience of having Asperges or being on the spectrum and therefore get diagnosed at different times of their lives for different reasons. Some people go through life not being diagnosed at all and others go through childhood and come out the of the schooling system wondering why it was so hard for them. For me it took ages to want to get the diagnosis because I didn’t want anything to do with it. When I was in my early years of high school I was lying on the couch with my mom and she said to me, ’We think you have Asperger’s, but it hasn’t been diagnosed yet.’ I was totally taken back and right there I said, ‘I’m off to bed.’?Midway through varsity it was finally my anxiety that led me to go to a psychiatrist. She diagnosed me with Asperger’s and admitted me into clinic for three weeks to digest the diagnosis and the emotions that came with it.?

In a conversation someone might ask to one with Asperger’s: ‘What are you feeling?’ A typical response would be, ‘I don’t know.’ This is a common trait and one that is not known too much but is called Alexithymia. Converting thoughts and feelings to speech is a hard task for us Aspies. I found it helpful to have a feeling wheel close by to be able to identify what I am feeling. After many years of going to a psychologist, I struggled to identify my emotions and found myself often looking it up on the internet before my appointment: ‘How do you know what you feeling.’?Honestly, it was only recently that I was told about this trait and it was a huge ‘ah-ha’ moment for me because I, like others with Autism, would go to my room and just burst into tears for no apparent reason. We are unable to process the difficult and different emotions the same way as others and are unable to put it into words.

This becomes very complicated when one also has anxiety and depression because there is no way to truly state what you are really feeling. Many children have Alexithymia, but so do adults with Autism. As a child with this symptom of Autism being unable to express your emotions will lead to further depression in adolescence and adults because they have not had the space to express and process what was happening at school or in their social life. It was a suggested in one of Professor Attwood’s talks that one way to express how you are feeling is to pick out a song in which the lyrics describe how you feeling, or choose a picture that describes it or perhaps a poem but not just rely on trying to think it through and express verbally.

For me I relate to many?‘Passenger’?songs, however I always go back to his song which is simply called?‘27’?when I start to doubt the direction I am going in life. A few lines I have taken out of it is: ‘I don’t know where I’m running, but I know how to run,/ ‘Cause running’s the thing I have always done.’ It reminds me to continue chipping at the log and someday things will fall into place and I will get there in the end.

People with Autism are often attracted to a career in the arts because the arts enable them to express themselves and their inner world of emotions. For me this has been in the kitchen. I have always had an obsession with cooking and the culinary arts as this is how I express my emotions. Expressing emotions in an open way with no judgement is liberating to us, because so often we don’t know how to open up.

I went to a cardiologist recently because there were some things that were bothering me –?heart palpitations, heavy chest, rapid breathing, high pulse rate and difficulty exercising. Being concerned that it was something serious, I went to have it checked out. In the rooms, after going for thorough tests, the doctor told me that what I had was anxiety presenting as a heart condition. He continued to say that he has seen this so often in his 30 years of working with heart conditions. It was an eye-opening moment for me, because I didn’t necessarily feel anxious about anything in particular. However, just the previous week, having had people to distract me, my symptoms of the so-called heart condition were under control.

For some with social anxiety, symptoms might have become worse, but for others who crave the connection it can be a distraction and aid in controlling anxiety. It showed me the effect of anxiety on the body and the importance of getting it properly diagnosed. Treatment can be through medication, but often it is suggested that exercise, mindfulness, breathing and quiet time can calm the nervous system.

It is not an easy discovery to deal with. However, by taking that step and having a better understanding of yourself, you can start to answer the questions you have been struggling with. It helps to have treatment or therapy, with a psychologist and psychiatrist to better your symptoms of anxiety and depression and help with improving social skills.

Another career which Aspies or autism warriors may find themselves in, is one of the academic or factual professions. Like engineers, accountants, computer programmers or a number focused career. We are good at finding patterns and pointing out facts.

There is a saying that people with Autism often become a ‘professor’ in their chosen interest, because they do so much research on the topic, and they can tell you everything you need to know about it.?This leads me to mention some people that have Asperger’s/Autism who are now being recognised for their work that they are doing. Many years ago, Temple Grandin put Autism on the map with her movie, ‘Temple Grandin’, sharing her story and interest for developing and building cattle handling facilities. Most recently, Greta Thunberg is one of those people wanting to make big changes and get a message out there. She goes on to say that without her Asperger’s, she would not have had been able to see the climate crisis’ seriousness and in this way she sees her diagnosis as a superpower.?She is making waves on the internet and has become a heroin of Asperger’s. Her interest in the field of climate change is taking the world by storm and she is fighting the case tooth and nail.?We need more people who are willing to fight without being scared of what others may say or think.

For me, the discovery of Asperger’s has meant that I can move on from my past and look forward knowing that I can use my experience to help others in the same situation to start their journey of discovery. Those diagnosed with Asperger’s all have something to give to the world and my hope for those on the spectrum is to use their superpowers to make a difference. We may have our quirks, but don’t judge a book by it’s cover!

Originally published on: The Persephone People

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