What It's Like Living With Asperger's Syndrome (on the Autism Spectrum)

Updated on November 14, 2019
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L.M.Reid is an Irish writer who has published many articles. She has autism spectrum disorder—on the high functioning end of the spectrum.

What it's like living with Asperger's?
What it's like living with Asperger's? | Source

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.

PJ at age 5
PJ at age 5 | Source

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.

Transition Year

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
  • Mozart
  • 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.

College Life

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.

Resources

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.

Questions & Answers

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      • viking305 profile imageAUTHOR

        L M Reid 

        7 years ago from Ireland

        Thank you all for taking the time to leave a comment. PJ is now 19 years old and doing great at University.

        Life is still a challenge for him socially, but as he says if he did not have Aspergers Syndrome he would not be who he is today!

      • profile image

        Carol - Aspie Sibling 

        7 years ago

        CMJ - when you observe the stress that school can bring to an Aspie, the temptation to home-school is huge - but not every family can afford that option financially (living on one paycheck), plus you may be denying your Aspie long-term improvements in social schools just to avoid short-term stress. Working closely with an experienced teacher in the development of an IEP can make a great deal of difference.

        www.aspergersschools.org

      • profile image

        linda 

        8 years ago

        thanks for sharing. My daughter is w9. just diagnosed. Wwish we had your wisdom

      • profile image

        CMJ 

        8 years ago

        Has anybody tried homeschooling their children? It can be a big help I believe.

      • La Papillon profile image

        La Papillon 

        8 years ago from Melbourne, Australia

        Awesome! I hope your son keeps writing and sharing his experience of life.

        Qbrown 9 - best wishes to you and your son too. He sounds like a wonderfully enlightened and intelligent boy.

        The 'voices' of people on the Spectrum are invaluable, as are the individuals themselves.

        Cheers, Louise ;)

      • viking305 profile imageAUTHOR

        L M Reid 

        8 years ago from Ireland

        Qbrown9 thanks for your comment. Now that your son has been diagnosed with Aspergers his life will improve.

        Taking him out of the school where he could not cope was the best thing you could have done for him at this stage. He will be with people who understand his needs at the new school. This in turn will give him confidence and enable him to relax and enjoy his life.

        Your son is among a very select group of human beings. As PJ said he has Aspergers Syndrome and wouldn't have it any other way because it made him who he is.

      • viking305 profile imageAUTHOR

        L M Reid 

        8 years ago from Ireland

        Thank you MPG Narratives for reading. Yes we were the same when PJ was diagnosed with AS all those years ago. We had never heard of this form of Autism before. Now thankfully it is a lot more well known. But it is important that more people get to understand the condition and the stresses it can cause for a very young child.

        I am delighted to read that Luke has indeed grown up to enjoy his life and is doing well.

      • viking305 profile imageAUTHOR

        L M Reid 

        8 years ago from Ireland

        Thank you abbykorinnelee for reading and your comments

        Yes it is very important to understand what younger children with AS are going through. They do not have the freedom of adults to direct their life in a way that gives them relief from the never ending stress of their life.

        They are having to deal with social situations, noise and other sensory overloads every day. It is no wonder they have melt downs and appear to be badly behaved.

        Children with Aspergers Syndrome are unique and wonderful young people. Unfortunetly the majority of people do not accept someone who is different without suspision

      • profile image

        Qbrown9 

        8 years ago

        My son has been diagnosed with Asperger's. He suffers from debilitating tics and anxiety. He is not able to attend the public middle school. It was too much for him and I took him out. He is gifted in so many ways, but he struggles to understand his peer group and expectations of others. He will attend a school that embraces Asperger's and knows how to handle these kids. I hope this works for him. It is tough, but I agree that kids needs to feel special about who they are rather than disabled or deficient. It makes a tremendous difference. He can say now I have Asperger's and it's okay. He defends those with autism. He has taken notice. It's a beginning. Thanks for the hub. Getting the word out is so important.

      • MPG Narratives profile image

        Marie Giunta 

        8 years ago from Sydney, Australia

        PJ has a lot in common with Luke my friends son who has AS, I wrote about Luke, it was one of my first hubs. Aspies are special people who deserve to be loved for who they are and not be forced to conform to 'normal' conventions. My best wishes to PJ and his family and friends.

      • abbykorinnelee profile image

        Abigayle Korinne 

        8 years ago from Plymouth WI

        Very emotionally driven in a positive way hearing the account from a child through teens. To get a view of the inside that we don't normally get to embark on. A world that is so majestic for our kids they don't always want to join us. I learned so many things beyond educational rights and advocating and diagnosis. Watching these kids and listening to the different ways they communicate or they interact or their different way of viewing the facts or the world. Its so innocent yet so adult. Even when they understand the realities of life or war when they should be to young yet struggle with small daily normal tasks can be heart breaking if you let it but his heart shows that even though its hard and at times you wanted to not be born sheds light on your pain and frustration so we can now see it before we usually would be fore the problem is so out of control. I understand now why my son with Autism gets upset and say's he is fired or that he will kill himself...I don't think he literally means it but its saying how great that pain is. Thank you for sharing a view that is so much a private life in the past and I hope we all can learn from the amazing people these kids are and if our communities are more aware we may get even better diagnosis and treatment availabitly. God Bless your son for he is going to be a wonderful addition to our society

      • profile image

        Christopher Woodward 

        9 years ago

        I liked your story.

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Hello It's just me and thanks for reading the hub. Yes it certainly does make a difference because anyone with Aspergers has to put up with a lot from people in the 'ouside' world. It is very stressful for us and then we need to be able to have the security and safety of our home.

        If people with AS know they have this support then they can go home and feel strong and recharge their batteries in safety.

      • It's just me profile image

        It's just me 

        9 years ago from Alaska

        Thank you and PJ for writing this. I also believe that the unconditional love, respect, and acceptance by family help a great deal.

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Thanks for reading the hub and your comment topdentistfinder

      • topdentistfinder profile image

        topdentistfinder 

        9 years ago

        Great information and positive hub! Thanks.

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Thanks Bayoulady for reading and commenting. Yes I agree with you totally. Especially where children are concerned. At least with adults with Aspergers they have to a certain degree control of their own daily lives. They can choose what to wear and eat. Very important to a person with AS.

        I cannot wear shoes of any kind in the house. I wear shoes to go out and to work and have taught myself to put up with it. But once in the house I take off my shoes immediately. I eat what I want when I want. I have control of my daily life.

        A child does not. This puts tremendous stress on them as the WORST thing for a person with Aspergers, child or adult is for things to happen unexpectantly.

        A child is made to wear and eat what they are told, once it gets to the stage for that child that they cannot cope with this situation then usually they do what all children do, have a trantrum and a meltdown.

        They are living a life of pain and hurt and confusion and fear. Once Aspergers is diognosed then the child has the understanding of their parents and some hope of a better life.

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Thank you Great life for your comment. Yes I believe it is important for Aspergers Syndrome to be highlighted.

        The more people who are aware of the condition the better, it creates an understanding of people who are different. The workings of a child particulary with AS is very confusing and frightening. If undiognosed then the child goes through hell at home and in school.

        Once AS has been accepted by the doctors and the parents and the child's mind is understood, that child's life improves immensely.

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Thank you Kathyfo and Ingenira for reading and your comments. Yes, life for a person with Aspergers is complicated and a child finds it hard to cope until they get older. The thoughts of a person with AS are different and complicated for sure.

      • bayoulady profile image

        bayoulady 

        9 years ago from Northern Louisiana,USA

        An awesome informative hub. I have a daughter who is autistic and a relative who is a high functioning asperger's syndrome kid. As long as you can remind yourself of what they are experiencing and not expect them to be a cookie cutter mold of you, then you can have enjoyable and enduring times together.

        RATE UP!

      • Greatlife profile image

        Greatlife 

        9 years ago

        What a touching story, I had a vague idea of what AS was. Thanks to this insightful hub it brought the entire subject to light. Thanks for sharing.

      • Ingenira profile image

        Ingenira 

        9 years ago

        it's good to hear from an AS directly what it is like to be an AS. A great article indeed.

      • kathyfofathy profile image

        kathyfofathy 

        9 years ago

        endearing

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Thanks for reading the article Pamela. Yes PJ was the worst case the hospital have seen in years he had all the traits of AS and all in a very strong way. He still has but now that he was got through the childhood years he is able to cope with it better. Everything is hard for him but it is something he accepts and gets one with.

        I am 53 and have AS too. I was lucky in the sense that my father, we know now also has it. So my family life was a bit unusual. we travelled all over the world when I was a child so never settled or made friends. My mother accepted that her 5 children all had different tastes in food and accomadated us. Much to her relatives amazemant. My brother and 3 sisters all have AS to varying degrees.

        But as you say we knew we were different but not why. I have AS pretty bad though and it has effected my life adversly because it went undiognosed until 10 years ago. Having AS to a lesser degree is sometimes harder yes I agree because it can go undiognosed and therefore the person will continue to believe they can change the way they feel and act. They blame themselves for not being like the majority of the population and therefore unable to fit in.

        Being diognosed with aspergers is a relief because they can now understand why they feel like they have all their lives

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Yes Bailybear it is very hard for a child to cope with the outside world when thay have aspergers. School is such a large part of their lives.

        But to be honest as with my sister and her son PJ sometimes it is necessary to stand back and say hold on should I be putting my child through this pure hell in making him go to school and suffering in so many ways.

        PJ eventually went back to school once he was on medication and strong enough to cope with the pressures of life outside the protection and understanding of his family.

        I hope you and your son find peace with a new and more understanding school soon

      • Pamela Kinnaird W profile image

        Pamela Dapples 

        9 years ago from Just Arizona Now

        This really was very interesting to read -- and to see the videos. Your nephew is a great young man. Thank you for a really good article and for pointing out -- as your nephew did -- that some of the best thinkers in the world have been people with Asperger's.

        It's my understanding, too, that some people can have Asperger's to a very small degree which can make life more difficult until it is recognized. That's how it is with someone I know and love.

      • profile image

        Baileybear 

        9 years ago

        Thank you for sharing about your experience. My son was recently officially diagnosed at age 7 too. His meltdowns are starting to lessen in intensity. He is so stressed at school. We are going to try a new school. I've been writing about our experiences.

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        It certainly does make a huge difference,Jaypyramid. the sooner a child is diognosed with Aspergers Syndrome. Everything falls into place for both the child and the parents.

        At the time of PJ's Diognosis Aspergers was not well known but thankfully there is a lot more information out there now. And this kind of positive information like the article above can only help to make AS more understood

      • viking305 profile imageAUTHOR

        L M Reid 

        9 years ago from Ireland

        Yes drbj We never thought all those years ago when PJ was 5 yrs old and he and the family were going through such a confusing and terrible time that he would be so happy now. He is a lovely child or I better say adult lol, as he has just turned 18.

        I really hope a lot of people who are struggling with their children who have just been diognosed with aspergers will be able to see a wonderful future for themselves and their child.

      • Jaypyramid profile image

        Jaypyramid 

        9 years ago

        Its great to hear such a positive outlook PJ. I agree Viking, it makes all the difference when children are diagnosed young and get the services they need, both from a medical perspective but just as importantly from a school perspective. If people understand the traits and where a person with AS understands or sees things differently it makes all the difference. Thats why 'Awareness' campaignes are very good.

      • drbj profile image

        drbj and sherry 

        9 years ago from south Florida

        A fascinating yet positive account of what it's like to live with AS, viking. Should be of immense help to parents and children struggling with AS.

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