Asperger's syndrome: "Being diagnosed made me understand my quirks"

Hello OscarRose, thank you for accepting to share your story here on Carenity!

First of all, can you tell us a bit more about yourself?

My name is Tom and I am 20 years old. I am home-schooled and in my final year of high school. I live with my parents in the north of France until I can move into inclusive housing people with autism in the Paris area. I like to watch interesting videos, learn, look after my furry little sister (my parents' cat) and most of all, my special interest. It's an interest that can keep me busy for hours and that makes me forget to eat, drink, go to the toilet... This interest is the brain, and everything related to it (psychology, psychiatry, neurology, medicine), and autism, ever since I was 9 years old. I also was interested in veganism for six years and the transidentity.

You have Asperger's syndrome, can you tell us about it and what the symptoms are?

I prefer to talk about characteristics. You need to have the triad of impairments in order to be fully diagnosed with autism. You must understood that each autistic person has his or her own form of autism. By the way, we don't say "Asperger's Syndrome" anymore, but autism spectrum disorder (ASD), because Hans Asperger cooperated with the Nazis, believed in lots of horrible ideas and policies and took children to experiment on. We differentiate ASD with or without language delay, with or without intellectual disability and with or without high intellectual potential.

I, for example, have trouble with communication. I can go silent for several hours when I feel strong emotions or when I am tired. I have trouble understanding irony, especially humour and sarcasm. I hate changing where I sleep, or changing my habits or rituals, such as watching my TV series every day at the same time. I also have hypermnesia, meaning I can remember precise dates or details of my childhood. I'm hypersensitive to noises, smells, tastes and touch. Touch hurts me. I can't bear the tags in my clothes or some fabrics like denim, which makes my skin burn or itch. I can hug if I agree to it, or I can accept a nice touch in some situations. Even touching myself hurts.

On the contrary, I like to feel weight on me, which is why I have a weighted jacket and a weighted blanket made by a wonderful person.

I constantly wear my noise-cancelling headphones which also play music because otherwise I can go into a meltdown and hit my head, scream, or collapse from too much stimulation.

I also stim (self-stimulation): flapping (I shake my hands really fast when I feel an emotion), rocking, biting objects made for that purpose, paper, or my shirt, especially when I was young. My stims can also be: biting my lips, blinking hard and fast, repeating film dialogues at the table, and many other gestures or movements.

I find it difficult to understand facial expressions and non-verbal communication such as eye contact. I'm learning. 

I also have prosopagnosia, which is an inability or difficulty recognising faces, even those of people close to me. Brad Pitt also has it.

I know I'm smart but I'm not Rain Main. My autism isn't characterised by any intellectual disability. 

Pervasive Developmental Disorder-Not Otherwise Specified (PDD-OS) can be difficult to diagnose. How old were you when you were diagnosed? Why did you go see a specialist for your Asperger's? How many doctors did you see before being diagnosed?

I was 18 years old, so it wasn't that long ago. On October 3, 2019, I went to see a doctor because I identified with and felt comfortable only with autistic people after seeing the film "Hugo's Brain" with my sister when I was 11 years old.

My sister was the only one who believed me. I stood my ground and after autistic spectrum tests with my psychologist, I went to see an autism specialist. And I was diagnosed.

It's hard to diagnose, especially in women because they "chameleon-like" and can mimic social standards really well, and because there are different characteristics depending on the gender. I met with more than a dozen psychiatrists and was hospitalised several times before anyone gave me this diagnosis.

How did you feel when you were diagnosed? What did it change in your daily life?

I was relieved. I finally understood all of my "quirks". I was able to apply for specialised inclusive housing for people with autism, to acknowledge that my difficulties existed. I am now assisted by an educator specialising in autism.

How has Asperger's syndrome impacted your professional and private life?

In my professional life, I've worked a little, but it is complicated because I also have motor disorders, in addition to autism. As for my private life, you can say that it's also complicated because I have trouble understanding others, and people have trouble understanding me.

It's often said that people with Asperger's have difficulty socialising. Is this true for you?

Let's just say that we don't necessarily have the best social skills or understand social norms or standards, so that can be a problem. I can be very social and very talkative, but I don't know how to make and keep friends because of a lack of social skills. There are social skills groups for all ages and I joined one of them.

Can you talk easily or freely about Asperger's? Do your friends and family know about it? Do you feel supported?

I talk about it very easily, yes, even maybe too easily. By the way, ASD is not a disease. You can't cure it, it's a different way of seeing the world. My parents and my family know about it. I feel supported by my different doctors, but not so much by my family.

Finally, what advice would you give to Carenity members who also have Asperger's?

To be themselves. It's our strength and our weakness at the same time. It's just a different and wonderful way of looking at the world. We have a lot to teach neurotypicals (a term for people who are not autistic). We have to be proud of who we are because we are unique.

Any final thoughts?

I'd like to end with a well-known quote by Antoine de Saint-Exupéry, taken from his novel "The Little Prince": "It is only with the heart that one can see rightly; what is essential is invisible to the eye".

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