Reflections on Autism

I’ve been going back and forth about writing this post for several reasons. Firstly and most importantly, I’m loath to being anymore attention to the subject of Autism in connection with the horrific murders in Newtown. Although, as far as I’m aware(not officially stated yet), at least one of the student victims was on the spectrum and one of the adults trained in special education. I refuse to mention the perpetrator’s name. It’s a sad fact of history that the names of guilty are remembered more than the innocent. I don’t wish to add his name to my blog.  This is not a post about excuses or sympathy for a murderer. I don’t seek to portray a murderer as a victim in any sense. As a parent, I need to speak.

My heart goes out to all the families involved, as it does to any victim of violence anywhere in the world. I commend the adult victims in Sandy Hook School for their acts of bravery and as for the children, no child should die that way, no parent should ever out live their child. No parent should ever have to watch their child go through the trauma of losing their precious innocence to violence.

For the vast majority of parents everywhere, protecting our children is the most important thing in the world to us. This brings me back to my post today. I am a parent also. My son is seventeen. His diagnosis is Autism with a learning disability and my strongest basic instinct  is to protect him from anyone who would do him harm.

There is a saying I’ve been told a number of times that goes, if you’ve met one person with Autism, you’ve met one person with Autism. No two people with AS will be alike, just like no two human beings are alike. With that in mind, here is little background information on the subject. It’s in no way comprehensive and reflects my experience of dealing with a someone who is high-functioning but dependant.

Autism is a neurological developmental spectrum disorder(not a mental illness), ranging from non-verbal and completely dependant to high functioning to those you wouldn’t know had a diagnosis unless they choose to disclose it to you. Asperger's is on the spectrum of Autism(AS). There is no known single definitive cause  and there is no cure. There are therapies and treatments for aspects of Autism. There are learned or developed coping mechanisms. If someone is medicated it’s for an aspect of AS, such as anxiety, not the AS. Many people have no need of any medication. 

Autism comes from the Greek word autos, meaning self. The word has been used since the early 1900’s to cover a range of conditions which led individuals to isolate themselves, including schizophrenia symptoms. Around the 1940s, Leo Kanner used it to classify children he was studying. Around the same time, Hans Asperger was studying a similar condition which came to be known as Asperger's Syndrome(Syndrome meaning a collection of recognized symptoms or signs).

It was at this time when the first misinformation appeared, blaming mothers for not loving their children enough and not holding them. The lack of love in the parent translated to a lack of empathy in the child. This lack of empathy and disassociation from human contact resulted in the children ‘removing’ themselves from the world around them. The mothers became known as Refrigerator Mothers.

In the 60’s medical professionals began to understand more about autism and it’s previous links to schizophrenia were no longer maintained. However, children on the spectrum were routinely locked away in asylums, giving shock treatments, heavily medicated with a range of drugs including anti-psychotics or left to their own devices. Others, who were high functioning, often led completely normal lives. Some may have been considered idiosyncratic, or a little weird, or eccentric due to their autistic traits. Some could be your grandparents or great grandparents.

During the last two decades of the 20th century early intervention became more prevalent and a range of  therapies developed which allowed many children to develop beyond expectation and go on to live full lives, contributing to society. The movie Rain Man brought about another misconception, that all autistic people were disassociated geniuses or savants of some nature. The fact is, a person can be  a savant and not be autistic at all(around 50% are not AS). Likewise, people with AS aren’t always going to be savants(only around 10% show some sign). Obviously, we knew at this point the Refrigerator Mother theory was rubbish, yet it clung on to the 90’s, even making a brief reappearance in Ireland as recently as this year during a controversy where a professional claimed Autism was a result of bad parenting.

Let’s be utterly clear.  Autism is a neurological developmental disorder that presents with social difficulties. NOT bad parenting and not a lack of care and affection. Not even close. Most parents I know of a child on the spectrum have to fight tooth and nail for diagnosis and schooling while faced with the most hostile of treatment and judgement from their community and even their own families. Acceptance often takes time. This, while dealing with the grief and self-blame that naturally comes with diagnosis of Autism in a child, and the required education on what to expect. I talked about my experience here.

Some people on the spectrum have sensitivity issues. Loud noises, bright lights or crowds are difficult. For others, it’s not the case. Some can become fixated, some don’t. Some are highly intelligent, others aren’t so much. Some are verbal, some aren’t. Some make eye contact and some don’t. Some like hugs, others don’t like physical contact. Some see the world in black and white terms and are uncomfortable in social situations while others, like my son are highly creative and social… You get the picture, I hope. We aren’t talking blanket assessments here.

My most recent Autism heartache wasn’t caused by my son directly, rather it stems from my fear for him. It began with an ill-informed comment from a supposed expert on a news channel discussing the shooter in Sandy Hook school and the suspicion of Autism or Asperger’s. The supposed expert claimed, “…something’s missing in the brain, the capacity for empathy, for social connection, which leaves the person suffering from this condition prone to serious depression and anxiety.”

This was later dismissed by several other experts, as well as the notion of Autism as a mental illness. It was also clearly stated there is no scientific evidence of a connection between premeditated violence and Autism… too late. The damage was done and other media outlets picked up on the insinuation there was a possible link between Autism and why this horrible act happened at Sandy Hook. It blazed a trail across social media with the pitchforks coming out. Some of the reactions were disturbing to say the least. There have been calls for people living with AS to be locked up or stoned. They’ve been referred to as dangerous, violent, crazed, disturbed, mentally ill, retards… some things I refuse to even write on my blog. As an example, this is one comment posted on facebook that I grabbed from twitter. I blocked out the person’s name. It’s not about the person who said it, it’s about the idea there are lots of people saying similar things.

In the interest of disclosure, I didn’t do drugs, smoke, or even drink while pregnant and my son, my innocent child is one of the monsters she wants locked away. This is by no means isolated. The irony is one of his nicknames is Monster. He’s stocky, taller than me and can eat his weight in food. Monster was an affectionate term which has now taken on dark connotations for me.

                                                 

 

              

He is not violent. He has lashed out in the past when sensory issues became too much. When I forced him into controlled situations as a young child, such as cinema and swimming, to desensitise him to them. This were short, reactionary outbursts. More recently, last year in school during several upheavals when certain programs were cut from his routine, he went through a phase of physical stimming. Basically he flapped his arms about and accidently hit people around him on a couple of occasions. It was extremely distressing for him to the point he didn’t want to go to school for fear of  it happening again and he worked very hard along with the incredibly supportive staff to teach himself to recognize the onset and remove himself or back away. He would never intentionally hurt anyone. 

He is unsure about reading emotions but will ask if he thinks I might be upset or happy. He will ask me if I’m okay. He will later ask me if I’m feeling better. He’ll give people a ‘thumbs up’ to check if they are enjoying themselves. He hates any kind of arguments and will always ask if it’s been resolved. When my elderly father was sick, he got up every night during the night to check on him. Empathy is not absent.

If you’ve read my grieving post, you’ll have seen how far back we’ve had to deal with prejudice. At pre-school age(around diagnosis) he was put out of Montessori, other parents were uncomfortable because he wasn’t like the other kids. He played but he didn’t play with the other kids, language was an issue, he liked to line stuff up. The staff were uncomfortable. No one said Autism, but they knew he was attending the hospital for possible diagnosis.

Some years ago we took him to the local pub, a family ordinated place frequented by lots of kids. He was singing to himself but otherwise sitting quietly and watching a dvd with headphones on when a customer called a member of staff over and asked for him to be removed. People like him shouldn’t be in there, he said. Fortunately, the staff didn’t agree. 

His stimming(he was one hand clapping) caused an issue on a plane when a business man, who had already shouted at a stewardess, turned around and let a roar at him. The smaller kids playing in the aisle weren’t an issue apparently. Eric’s reaction was to freeze while my then partner loudly and calmly explained he was autistic and meant no harm. My son later tried to apologise without prompt, calling the man ‘sir’ as he’s always been taught to refer to his male elders. 

At seventeen, he has only recently started going to the local sweetshop alone and is very proud of himself for the achievement. As part of the training to do this, I had to follow him on a number of occasions. On one of these occasions, to my horror, a car stopped on the road beside where he was walking and minding his own business. The window rolled down and the driver yelled obscenities and abuse at him. They thought he was alone.

On another occasion, he came home from a five minute trip to the shop and asked me what retarded means. It’s now a word he repeats to himself over and over when he’s alone in his room at home. 

He’s asked me if his special needs school is a school for mental people. This is not something he has heard from me obviously. It’s not something he should ever have heard from anyone anywhere.

Like many other parents I had a talk with him about what happened. Although I’m sure people in America wouldn’t know everything that goes on in Ireland. Our US news is extensive and we receive the news channels. Eric also likes to read the newspapers. I told him very briefly what happened and that if he sees it on the news or is worried at all that he should come to me. Fortunately he hasn’t as yet.

Everyday I struggle with allowing him out of my sight. Like all parents, I stress about his safety from the moment he gets on the school bus until the time he is safely in the door. It’s a never ending battle with myself to allow him freedom to do what he needs to do while protecting him. He has an extremely high pain tolerance. His past injuries include two broken bones, one he had for two days before he cried out, and a severe burn from picking up a frying pan in school. His fear of danger, such a heights, fire, and sharp objects is a learned response. He knows they are dangerous because he’s been told over and over. I worry every second of every day already.

Now, thanks to media I have this extra worry of random people pitchforking and rabblerousing, who would gladly do my child harm for something he has absolutely nothing to do with. All because of a complete misconception of what Autism actually is and what it isn’t. So while I grieve for the families of the victims and survivors in Newtown, I’m worried for my child and what this means for his future and his safety in a world already loaded with prejudice against him. 

My son is seventeen. He loves music, movies, and travel. He loves to write songs, scripts, and stories. He sings badly and his biggest dream is to form a huge band and play a concert in a nearby concert hall or to design a game for microsoft. He plays GAA football. He loves his granddad, his uncles, and my brother’s dog. He loves me. He enjoys going out to dinner and chatting to the guys he grew up around about football. He will probably never live independently but he deserves to live with dignity. He is a human being, not a monster.