Mark Kent is an autistic writer and married father of four. Mark lives with Aspergers and Myalgic Encephalopathy (M.E.) (also known as Chronic Fatigue Syndrome), a condition that makes everyday tasks challenging. Mark participates in a variety of research studies related to autism and M.E. and blogs about them at http://mark-kent.webs.com/ in order to help others improve awareness and understanding of people with disabilities. This week he shared some of his personal experiences as a father of four with Asperger’s Syndrome.
Can you describe how Asperger’s Syndrome and M.E. affect your daily living?
Most people do not see the everyday effects of having Autism/Aspergers. Normal people push you aside. You have no friends. Normal people see it as a crime. My wife Tabitha is very normal, a lot more than most, yet people have said to her, “How could you marry a person like this?” “How could you have children with a person like this? These are the everyday effects. I am so very pleased I am NOT normal. I would be so very ashamed and disgusted [to act in the ways others have towards me]. I have M.E./Chronic Fatigue Syndrome. People make judgements of me. I have a long, long list of health issues, including bladder and bowel problems. I am not afraid to say or talk about them. I have carpal tunnel syndrome, allergies, migraines, reflux–all of these affect my everyday living. How would others cope or deal with these issues? I have to wear adult Nappies [diapers]. Normal people laugh and joke. How would they cope with the everyday effects of these health issues?
In what ways (if at all) does Asperger’s affect your family life?
The biggest effect on my family is other “normal” people and their judgements. As I am getting older, I hate/detest normal peoples’ judgements. We are a married couple, but I’ve never been treated like it. We have three boys, and one girl with a disability. We do NOT go making judgements about anybody else. We do not laugh or make bad jokes. I cannot work, but I am not to blame. I do not smoke or drink, unlike most. I help my family even though M.E. is affecting me more and I can only do one thing each day like shopping or mowing the lawn near our garden. Then when I come in, 15 minutes later, I am fast asleep for two hours. This happens 7 dAYS A WEEK. Most people do NOT see the everyday effects. Having Aspergers is very emotional. Often (I do mean often) I will sit and have a cry and snotty nose, but I do NOT see why or for what reason I am crying. However, I do find it helps me a great deal. Too often this happens though.
What is your book about?
I take part in a lot of research both on the internet and in-person at universities. For example, I’ve worked with Utta Frith (speaking in-person for 45 minutes), and I’ve participated in Tony Attwood’s research often. My book is all about the research I took part in. A second book I’ve written is about Aspergers and allergies and sensory problems, although I’m having a lot of trouble getting it on my blog. In my book about research, I asked different researchers and professionals questions, and their replies are in my book. My books are there for people to understand and be aware. They can be downloaded there as well. I do this for the good of others.
Specifically, what types of research have you participated in?
Autism, Aspergers, M.E., Chronic Fatigue Syndrome, mostly. But I’ve also participated in all sorts. I have a large list of health issues like allergies, migraines, Carpal Tunnel Syndrome, bladder/bowel problems, and a lot more. I’ve participated in a long list of research projects including sex/sexuality/sex education/puberty studies, and body issues/sexual abuse/bullying/disability studies. I have a lot of very rare results.
What do you hope to help or contribute by participating in those research projects?
Understanding/Awareness. Most people do not have this. Normal people say we do not show them empathy. But research shows we do. I say it is normal people who do not show this to people with Autism/Aspergers. If I did not take part in research, how could people understand or help or become aware? I am very well-respected for the research that I take part in. I have earned this. I deserve it.
What do people misunderstand about autism?
Emotions can be very upsetting for people with autism. Concentration is lacking. We can have eye contact, but for very SHORT times. We take things literally. Bladder and bowel problems are very common. Words are used agains us, like empathy. I think that many “normal” people have Aspergers, but the diagnosis isn’t carried out.
What have your parents or teachers done for you that you found especially helpful?
In my day, when I was at school, there was only one disability: DISABLED. I was bullied badly. Soon after I was abused, with no help or understanding in those days. It is very different now.
What do you attribute the success of your long marriage to?
We have been married 17 years and have been together 20 years. It has been very difficult. People have been trying to split us up, saying things against us. My wife Tabitha is very wonderful, beautiful and a lot lot more normal than most people are. We have three boys and a girl. It was amazing to be there at their births. When our daughter was born, I cut her cord…WOW!
What’s the best thing parents can do for their autistic children?
Understand them. Help them. Be aware. Most people do not see the everyday effects of Autism/Aspergers and how very affected the family is.