A is for Autism
I came to the party rather late in life. Autism entered my experience via a little 10 year-old boy. (Well not so little as he was tall even then and was well over 6 feet by the age of 13.) I knew nothing about autism. I had encountered a number of challenged individuals but the word autism was not a part of my vocabulary.
That all changed when I fell in love and agreed to take on a new family with small boys. One was a neurotypical 3 year-old and the other a 10 year-old with Asperger Syndrome. This diagnosis was changed about a year later to “on the autism spectrum”.
Many of the more sticking behaviours of the early years had subsided and most of the time he seemed fine to me. Of course, there were the self-stimming, the mild turret’s behaviours, the OCD and repetitive actions. After I got past seeing the quirky or “inappropriate” behaviours, it became rather clear that all these mechanisms were ways to manage stress. They were simply coping mechanisms no matter how annoying they were to me at times.
A is for Anxiety
Every day my son gets up completely anxious about the smallest detail of the day and still manages to move forward. Even doing things that he loves to do, causes him tremendous anxiety. That takes a enormous amount of energy and courage. I am amazed that he has been doing this all his life. He is now 18 and every day brings new anxieties about his life, as he moves into adulthood
I confess that I have never been able to “get his logic” and this has caused many an argument between us.
A is for Admiration
I think my son doesn’t think I appreciate the challenges that he faces… but I tell him often how much respect I have for him. I can’t imagine what it must be like getting up each morning in a state of anxiety and stress. He gets up and faces the day and fights his desire to retreat back into his own world of comfort. He is one of the few people in the world for who I have such admiration.
He talks to himself about how important it is to face those fears and do it. Telling him it will be fine is of no value. He needs time to talk it through to himself and process things.
I admire him for getting on the subway and going places, new places, on his own. I admire how he goes to the store to buy groceries that we need, even though it might be a new item he has not purchased before. I admire how he has had short job assignments in companies as part of his education, and somehow manages to survive a new and what seems like a dangerous situation.
Because some on the autistic spectrum have trouble being assertive in asking for what they need, someone else needs to help them. Naturally this falls to the parent, usually the mother who quickly takes up the gantlet to make sure her child gets whatever they need. Mothers and sometimes fathers become fearless advocates for their children. Their tenacity, perseverance and shear will power is a force beyond rationality. They make it happen somehow with little reserves left. No wonders there are times when they are so tired and on the brink of not being able to cope.
Parents of autistic children are not alone in becoming advocates. All parents with children of disabilities realize that no one else is going to provide the services that are needed. Some of these mothers decide that individual advocacy is not sufficient and they take on the “cause” and fight for rights, medical coverage, educational facilities, and job opportunities for all those on the autism spectrum. Without these women and men, services for the whole would not be available. We owe them all our appreciation.
A is for Anger
However, when you are on a crusade, either for your own or for all who are part of any community, there is an obsession that goes along. That energy takes many forms.
I am not one of those parents. I have never been an advocate and have somewhat been pushed into that role with Autism Daily Newscast. I try hard to step back and look at things in perspective. What I see is a white elephant in the room called “anger”.
I am not old enough to have been a part of the civil rights movement but I was a part of the feminist movement. And I remember men asking, in sincerity, why “us women” were so angry all the time. I see the same anger in the disenfranchised youth of today; the unemployed; the women fighting for a small amount of justice and fairness for their children. Please don’t construe that I am saying all mothers of autistic kids are angry. Just as if you meet one autistic person – you have met one person on the autism spectrum. Each one is different and so too the mothers that advocate for them. However, those that are angry end up being seen as representative of the whole.
Also, anger creates more distance via defensiveness. These mothers who advocate are accused of having no sense of humour and can’t “take a joke” or take themselves too seriously. They become dismissed or marginalized like the people they are trying to protect. Anger does not help the cause and it does not make you feel better in the long term. I know for I wrestle with my own anger and impatience issues.
A is for Awareness
Some within the autism community cries out for awareness as if that would make a difference. We have Awareness Month and parade to further education about the issues of autism. This is futile. Until one experiences the situation or loves a child with challenges, there will be no awareness. We end up preaching to the converted. We need much more that awareness.
I believe that the integration of each person on the spectrum is the key that will lead to acceptance.
Integration also includes those on the autism spectrum having a say and being their own advocates. It means letting our children have self determination even when it appears that they will make a mistake. It means joining forces with all those on the disabilities spectrum. The more we fight for limited resources the more we all loose.
Forget the statistics of 1 in 68 or one school age child in 50 in the US is on the autistic spectrum. What does that really mean? It means that one in six families knows and love someone who is autistic. Begin with our neighbours and friends. Ask for their assistance. Show them how amazing your autistic kid is.
A is not Agreement but rather the willingness to have an open dialogue.
It is my sincere hope that as Autism Daily Newscast moves forward, it will continue to report the good, the bad and the ugly as it is happening.
Editor’s Note: I wrote this article for another publication two years ago when I was getting my feet wet in this community. I have learned more since then but these words still ring true for me. I share them now with you as my last act as Editor and Publisher of ADN.