Autism is truly difficult to understand for those who haven’t experienced it first hand. For most people, autism is a distant, strange mental disability that involves someone else far, far away. The barriers and hurdles in the life of someone with autism are inconceivable to most. The hardships and challenges they face are a distant reality. Someone else’s reality.
Roughly 1 in 68 children has been identified with the autism spectrum disorder (ASD). We have most likely all met, heard of, or come in close contact with someone who has autism. Chances are that you labelled them as mentally disabled, and moved on. Unfortunately, until you get to personally experience first hand how special and unique these people are, that is the commonplace reaction.
My moment happened in the fall of 2001. Being confronted with reality of autistic life changed the way I perceive my own , forever. His name was Ian and the first time we met I thought he was one of the colleagues I would be working with.
Instead, he was one of the adults I was hired to help with daily tasks and emotional management. I didn’t know that as he offered me coffee in that very serious way of his.
I was impressed with his appearance and manner, I thought that he was such a gentleman. He seemed a bit stiff, but I figured he just probably needed some time to get to know people. While making coffee we talked about the day and how beautiful and warm the weather was. I offered my hand, apologizing for not having introduced myself earlier. He politely told me his name and how nice meeting me was but refused to shake hands.
He had autism. Until that moment, I had been taken slightly aback by his kind and polite nature. After that, I was just purely and ultimately inspired and filled with respect and admiration for him. I felt so glad I was there and looked forward to working with Ian, getting to know him better and becoming part of his life.
Ignorance is a bigger disease in our society than autism is. Having spent almost four years with Ian and others with similar conditions, I started to notice a different side to the people around me. An arrogant and ignorant one. A side that exists in many people but it only comes out when challenged by something unusual, such as dealing with autistic individuals. It’s not evil, just ignorance.
In Greece, the most common challenges for people with autism are ‘’the way others treat them. When we all go out sightseeing or to any other social event, people seem ‘scared’ to approach us. Sometimes they will even avoid sitting next to us on the bus”, says Mr Dionisis Pappas, who is specialized in Special Education and has been working with autistic children and adults since 2008.
I can really understand that. I have lived through the endless and harsh struggle that parents go through, fighting and advocating for their children’s rights and equal treatment at school, and in everyday life. I have seen the difficult changes autism brings every single month and the enormous efforts by parents to deal with those changes.
Sometimes it is unbearable. Often, it’s exhausting. There are moments of depression and withdrawal. There are times of trying to be positive, trying to value the small things in life, taking nothing for granted.
There are a lot of issues surrounding autism. “A child’s autism diagnosis affects every member of the family in different ways. Parents/caregivers must now place their primary focus on helping their child with ASD, which may put stress on their marriage, other children, work, finances, and personal relationships and responsibilities.
Parents now have to shift much of their resources of time and money towards providing treatment and interventions for their child, to the exclusion of other priorities.”
Parents often come face to face with society’s inadequate services. They are forced to confront and deal with widespread ignorance. On top of dealing with the actual, daily problems of the condition, they also have to become advocates, medical experts who provide accurate information to the general public they come in contact with, because locating suitable early intervention programs, securing a suitable diagnosis and much needed medical care and therapies alone was of course too easy.
Mild to severe tantrums, feeding difficulties, a variety of sleep problems, limitations in socializing and interacting with others, along with impaired sensory processing and environmental assessment are just some of the issues faced by autistic children and adults.
Our own Cytogeneticist, Maria Tzimina MSc, explains some basic information on autism many people do not know and usually ask about.
Autism is known as a complex developmental disability. Given the complexity of the condition many probable causes exist but so far nothing is quite conclusive/concrete:
Research revealed the possible link between genes that are inherited from the parents that predispose children to autism, like in cases where parents have been diagnosed with bipolar disorder or schizophrenia.
There have also been cases of autism known to run in families, as younger children born to families with an older sibling with autism have an increased risk of developing the condition. Consequently, identical twin studies suggest that if a twin is affected there is a 90% probability the other will be affected too.
However, these studies are preliminarily requiring further investigation and no specific genes linked directly to autism have been identified. As a result, no specific tests exist that can screen for genes responsible for autism, before or after birth. Autism tends to occur more frequently amongst individuals with specific genetic disorders, including Fragile X syndrome, muscular dystrophy, tuberous sclerosis and Rett syndrome. Therefore, a specialist can ask for further tests for specific genetic conditions, depending on any possible additional symptoms the individual may present.
Some scientists believe that, although people can be born with a predisposition to the condition, they can develop it only if specific environmental conditions trigger it before birth, like exposure to air pollutants, alcohol, specific drugs or flu infections. Premature birth (before 35 weeks) can also be a possible trigger, in addition to the father’s age during conception.
It is important to understand that autism is a wide-spectrum condition, meaning that different individuals will present different symptoms, others milder and others more severe. Also, it is crucial to debunk the myth about people with autism being unable to express feelings or feel love, happiness, sadness, pain like everyone else. Just because they may not express their feelings in the way most people do, that does not mean they do not have feelings; they do! It is ignorance and lack of education that “encourage” people to carry this myth.
Talking to parents of autistic children you often get to hear stories of unbelievable courage, inhumane patience, extraordinary efforts and dark days of sadness, disappointment and desperation. You also hear warm stories of unconditional love, appreciation of life, of a self-discovery journey that they don’t regret embarking upon and feelings of hope and anticipation for a better future for their children.
Autism is not a disease. Autism is not contagious. People with autism are people, like all of us. Everyone is different and everyone is unique. The thing they need the least is everyone else judging them, avoiding them, mistreating them and being ignorant towards them. What they do need is love, equal treatment, respect, understanding and enough awareness to be raised so that society is able to help those affected and their families even more. They need more treatment and therapies to become available, early intervention and diagnosis, and more research and funding.
Parents also need more help with costs, available schemes where their children can find work, emotional and psychological support, special workshops and education on how to deal with problems that come with autism. We need to expand our disability networks all over the world and give families the opportunity to interact with other families, exchange information and opinions, have access to more services and more support at school and social venues.
I remember Ian’s amazing obsession with trains. He would know every single type of train ever made, their colors and speed and all the local train times too. I was so impressed by that and his extraordinary knowledge on the subject used to make me smile.
My name is Effie, I am a psychologist and I love someone with autism.
Useful sites for information and support: