What It's Like Living With Asperger's Syndrome (on the Autism Spectrum)
Being Diagnosed With Asperger's
My nephew PJ was diagnosed with Asperger's Syndrome when he was seven years old.
For the first seven years of his life, he was suffering untold misery and desperation. Our family was completely mystified and looked for answers as to why he could not cope. He wanted to kill himself many times but was not able. He would beg his parents to do it for him. The doctors told us he was fine, and there was nothing wrong with him. We wanted to help him but could not get any answers.
His mum vowed to fight the system and insisted that the doctor refer him to a children's psychiatrist. A few months later he was diagnosed with Asperger's. They said he was one of the most extreme cases they had seen. In 1999 in this country it usually took over a year to get an appointment with a child psychiatrist.
After his diagnosis, PJ did go back to school because he loves learning. He was able to cope better when he knew what triggers to avoid in addition to school providing extra support. He did not attend school on Wednesdays because he needed a day off to cope with the mental and physical challenges he faced. He could just about manage those two days knowing he had that time to relax at home. He was then able to go through it again for the last two days of the week.
PJ has kindly agreed to share his feelings as he was growing up—before and after his diagnosis of Asperger's. This article will share details from his life as a 15-year-old first before going into what life is like as an adult.
What Is It like Living with Asperger's?
I was very aware of the problems in the world from the age of five, and it was much too difficult for me to tolerate everything at such a young age. A child so young should be in a state of ignorant bliss until they are emotionally developed enough to know about things like death, murder, war, slavery, racism, and rape.
I Was Stressed Out All of the Time
My parents knew there was something wrong with me as I was completely stressed out. I could not go to school or wear shoes or certain clothes. I was having complete meltdowns at home and was in a terrible state all the time. My mother tells me the last straw for her came when I was having a complete meltdown about going to school one morning.
She saw the absolute desperation and hopelessness in my eyes as I begged her not to send me. She realized that I came first and she as my mother was there to protect me and not go by the rules and make sure I attended school.
I Saw No Way Out
I could see no way out of the life I had. My mother tells me I was constantly telling her and the rest of the family that no one could help me and that I would feel like this forever. One day I went to my mother and begged her to kill me with a knife. I told her I had tried a few times myself but couldn’t do it. We both cried many tears of helplessness that day.
My Psychiatrist Prescribed Medication to Help
The child psychiatrist who diagnosed me wrote a prescription for Prozac to help with my bouts of depression and suicidal thoughts. At fifteen years old, I had control of some of my traits and most people who were not aware of my condition would just see me as a bit eccentric.
What Are Signs of Asperger's Syndrome?
Here are some signs that a person has Asperger's:
- They have a hard time grasping the concept of non-verbal or semi-verbal communication (i.e. body language, sarcasm, subtext, and taking things literally that are meant as a figure of speech).
- They fail to develop relationships with people in their own age group.
- They have a hard time expressing emotions or understanding the feelings of others.
- They have a very intense interest in one or more topics (usually very specific fields).
- They stick to some very strict routines or rituals (i.e. always brushing their teeth for exactly 4 minutes, exactly 10 minutes before going to bed at exactly the same time every night).
- They perform subconscious repetitive movements.
- They have impaired social interaction.
- They have no significant delay in the development of other areas (i.e. language).
These can cause problems in everyday life; for example; when I was five years old, someone phoned my house. I answered, and the person asked if my mother was there. I said, “Yes, she is”, and then hung up the phone.
You may be laughing at that right now as it is funny; however, the harsh truth is that some of these problems can be somewhat depressing.
How I Coped at School
Going to school was still a terrible problem for me. I was stressed out every time I went, but my parents did make my teachers aware of my Asperger's Syndrome. Gradually, the medication and the understanding of the condition helped me and my family cope.
I Found Sanctuary in Books
I didn't care much for fiction, but fact and science fascinated me to no end. I had an insatiable thirst for knowledge that aroused my senses and consumed my mind. I wasn't very sociable and in fact, I had no friends at all; I didn't even know what a friend was. But that didn't matter as I moved on to bigger and better things. When I came home from school I would head straight to my room to read.
By the age of eight, my search for knowledge became more refined. Physics was my calling in life. I read Einstein, Newton, and anything I could find. My interests turned to astronomy, and I joined the Irish Astronomers Association. Once a month, we would go up to the Phoenix Park in Dublin where many large telescopes were set up and we stayed there, looking at the stars for nearly two hours.
As time went by though, my interest in astronomy dwindled as I entered a darker period of my life.
How I Made Two Close Friends
At the age of nine, I made my first friend. She was a girl much like myself called Caoimhe. She was an outcast as I was; ostracized by the ‘normal’ children in my school. She didn't care how strange I was, and she was a comforting companion to help me out of my downward spiral. I went to her tenth birthday party after she invited me as she was my only friend and lived very close by.
On my way walking back from the party, I ran into a small boy a few years younger than me. He was being bullied by two children who, though older than him, were still younger than me. I chased them away and the boy and I, whom I later found out was named Mark, struck up a friendship that has lasted to this day.
How I Succeeded in Secondary School
I entered secondary school, and I found out how much trouble Asperger's Syndrome can be in higher levels of education. It was very hard and stressful at first, but I adapted and made a small, tightly knit group of friends. I did what I could to cope and, in time, the Junior Cert came around.
It was a very stressful time but due to the great amount of support from my parents and the staff in the resource room in my school, I got through it with great results.
The transition year allowed me to explore many different subjects and examine my abilities. I chose to take physics, biology, and chemistry, as these are subjects I enjoy and excel in.
My story may not be a happy one but I wouldn't change it for the world as it has made me the man I am today and I believe it is worth it. In this situation, the end justifies the means.
The Positive Aspects of Asperger's Syndrome
Han Asperger had a very positive view of Asperger's Syndrome. In 1979, he said that for a career in science and art “a dash of autism is essential" for success. The necessary ingredients may be an ability to turn away from the everyday world and the simply practical, and the ability to rethink a subject with originality so as to create in new untrodden ways—with all abilities channeled into the one specialty.
A List of Famous People Who Had/Have AS
- Albert Einstein
- Charles Darwin
- Isaac Newton
- George Orwell
- Bill Gates
- Satoshi Tajiri, the creator of PokeMôn
These people have all been successful in fields where both logical and abstract thinking are required, and the first three have made breakthroughs in science that are still some of the most influential of all time. This implies that many of the biggest advancements in human history were created due to the abstract reasoning of those with Asperger's traits.
How I Embraced My Personality Traits
During secondary education, I opened up and began to trust people more, gaining many new and interesting friends along the way. I learned how to express myself and my own unusual way of thinking and acting without holding back
I wore surgical scrubs and a stethoscope to my biology exam because I thought it would put everyone in a good mood—it did, even the teachers laughed and gave compliments. I try to do at least one unusual thing every day to make the world more interesting and I never have to look far.
After my exams, I'll be going to college to study computer science, which is my passion now. I haven’t talked to Caoimhe in a long while since she moved away—which makes me sad—but the last I saw of her she was happy so I'm optimistic. I still talk to Mark through email, though I don't see him as often as I used to, maybe every two months.
Every day I'm discovering something new and interesting which changes me a little so who knows what I'll be like in a year or two.
PJ's Life Post College
PJ has completed his time at university. He has a small circle of friends who spend time together. He enjoys his adult life. He has hope and enthusiasm for his future. He did have a terrible few years in his early life where neither his parents nor himself knew what was happening and why he felt the way he did.
Family Support for Children with Autism
I believe it is very important for the sanity and physical wellbeing of a small child with ASD to have the support and love of their parents. If the Autistic child is allowed to be different and accepted as such, then they will be able to grow up with confidence in their abilities and future. They will accept they are different than the majority of people in this world and will,l like PJ and me, be glad of this difference and embrace it.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.