The piece is written by the mother of a boy who has the “kind of autism that no one wants to talk about”. And the kind of autism she means isn’t high functioning autism. Her article was written in response to a lawsuit in California where the family of a boy with autism, with similar behaviours to her own son, is being sued by several families in their neighbourhood. The lawsuit argues that their child is a “public nuisance” because his behaviour is out of control and that the safety of their children is at stake. They also claim that his parents have taken no responsibility for his actions nor have they done anything to remedy his behaviour. “For us this case is not really about autism,” said Robert Flowers, one of plaintiffs.
According to the author of the article “This is absolutely about autism. It’s just not about the autism people hear about”. She wrote about her own son who ran after children in the playground with the sole purpose of knocking them over. Her son hit, kicked, pulled hair, hugged her sometimes and other times hit her. She spoke about the isolation of autism and about eventually having to withdraw from society so that she could keep other people safe from her son. She shopped at 6:00am when there would be less people around. She touched on the subject of play date invitations being revoked as soon as she explained the issues her son had and her shame at that.
She concludes her article with the words “We can open our eyes and understand that autism isn’t all about the high functioning child who is “quirky” but OK to be around. Autism isn’t all about the six-year-old who can play Piano Man better than Billy Joel. Autism can be hard. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating”. She is right on all those counts.
I remember when my first daughter was diagnosed with Aspergers Syndrome four years ago. My first instinct was to protect her and to keep her diagnosis from society. I felt that if word of her diagnosis got out, she would be treated like an outcast. I even contemplated keeping it from her teachers. I couldn’t help feeling this way. I still remember sitting in the room after her diagnosis as the psychologist and speech therapist were still talking. I was miles away. I can only liken it to being in a swimming pool and hearing voices but not really tuning in to what they were saying. I had thought she would prove them wrong that day. I thought her teacher was over-reacting. I couldn’t believe it but deep down I knew that her behaviour and that of her twin sister at times weren’t altogether typical. I wasn’t expecting a diagnosis on the autism spectrum though. The only autism I was familiar with was severe autism in my extended family.
My girl has high functioning autism. She is a highly intelligent, articulate, witty and affectionate little girl as is her twin sister who was later diagnosed with ASD level 1. They are the “quirky” type that the author mentions. They have so many talents but that is not to say that they don’t find life hard and that they don’t have their challenges. They might be “ok to be around” most of the time but when things get too much for them, they can be difficult to be around. Thankfully the latter is becoming less and less as time goes on as we continue to work with them to enable them to achieve everything they are capable of achieving.
Back a few years ago, we thought we could continue to keep their diagnoses a secret. We couldn’t. They were different to their peers. When they went to parties, I was always worrying about them. I found myself having to explain before the party that they might want to go off and be on their own when it got too loud or too claustrophobic for them. That they might get overwhelmed. That they might get upset. Most parents are very understanding and almost intuitively knew that our girls needed a bit more space but there were others who struggled to get it. There were times when I had to collect them early with parents watching on, some pretending not to notice, some looking sympathetically and some staring. It was hard and I wished life could be easier for them and easier for us too, if I am to be honest.
I took a big gamble but felt that I owed it to my girls to put their story out there. The real story. I wanted to give those who thought they knew my girls an insight into the life of my girls and not the life they thought or assumed they had. People who saw the girls upset at parties or in public places assumed that they were like that all of the time. People who had never met my girls had an opinion of them that wasn’t completely accurate either.
The gamble to publish the piece about my girls paid off. People really responded to their story and in a good way. People were more understanding and suddenly the girls started to get invited to more parties. When they were allowed to just be themselves (which they were after I wrote my blog post!) they came home on a high and I got no phone calls to collect them early. I will always be grateful to the parents who included my girls and took that little bit of extra time with them so that they could enjoy parties with their peers in their own way.
When the word autism is mentioned, generally people tend to think the worst. Sometimes life with autism is a very difficult and neverending road but sometimes with the right interventions children diagnosed with autism can make huge leaps and go on to live a very full life.
When the girls were first diagnosed, I joined a group on Facebook for women on the autistic spectrum. Through this I have met and spoken to many articulate and bright females who have autism. Many are mothers with their own children. One such lady is Fiona O’Leary who was diagnosed with Aspergers at 42. She always knew she was different. Like many who have been diagnosed with autism in adulthood, it can be a relief to finally have an explanation. Fiona has appeared on TV and has written numerous articles about autism as well as being an autism advocate. She has five lovely children of her own and is married to Tim.
Adam Harris, founder of AsIAm.ie who also has Aspergers is living proof that intervention is invaluable to any child with autism. I have heard Adam tell his story and stand up in a crowded room to do so. He is amazing. He travels the country as an autism advocate to create a better awareness of autism and is an inspirational speaker. When you see how eloquent Adam is, it is hard to imagine that he spent three years of his primary education in a school for autistic children before being eventually integrated to mainstream school. Adam was lucky to have got the necessary interventions required to help him flourish. Not every child is so lucky. Waiting lists continue to lengthen and it is so sad that children who need immediate early intervention are having to wait for more than a year for an appointment for assessment with another wait for the necessary help. My girls have been three years on a waiting list for occupational therapy. Ireland has let down many of it’s future generation already and continues to do so. Parents of children with autism are often too tired to fight, some never getting a full nights sleep. They shouldn’t have to then fight for services for their children nor should they have to try to scrape enough money together for private therapies either. Their children deserve to be looked after. They deserve better. As journalist Brendan O’Connor recently said on live TV, the lack of support for people who have disabilities will cause Ireland to be called an “inhumane culture” in years to come.
When I wrote Double Trouble about my girls, I wanted to give hope to parents of newly diagnosed children with autism, if I could. Back in 2012, all I wanted to do was talk to someone with a positive story to tell about autism. It is very hard, at first, to be optimistic for the future when you get a diagnosis of autism for your child but I yearned for a happy ending. I wanted to talk to a mother who had been in my situation but was now in a better place. The principal at the girl’s school very kindly put me in touch with that person. She was a few years ahead of us in that her son, with high functioning autism, was then heading into his teenage years. She didn’t paint it in any other way than what it was – tough at times but that everything wasn’t going to be all doom and gloom. That phone call really boosted me and helped me to get focused. I was in shock for six months after the first diagnosis but that phone call spurred me into action to start putting things in place for the girls, including getting my second girl a private assessment.
I have been very vocal about autism because I want to raise awareness about autism. My only experience of it is being a mother to girls with high functioning autism so that is all I am really qualified to talk about. It is an absolutely massive spectrum and no two people with autism are the same. My girls are not the same. They couldn’t be more different. The life we have with our girls compared to the life of the parents of a child who has severe autism are very different. Of course we have to put in that extra effort with our girls to help them reach their true potential but we do feel very lucky that our girls are overcoming many of their obstacles. They are only getting better as they get older. This is not the case for every family unfortunately.
Our girls are really doing great now, but new challenges always arise. The one constant is that as parents we worry but at the same time try to keep a positive outlook on how they will do in the future.
Our autism journey and the journey of the author in the post above are very different but in some ways they are similar too. We used to have to avoid certain outings with the girls when they were younger. There are some things we still have to avoid but we try to make their lives as varied as possible. It means that they are better able to deal with sudden change. Life is not going to stay static so we would be doing a diservice to our girls if we tried to keep everything the same for them. I’m sure there are lots of things we could or should be doing but there is no handbook you get when your child gets a diagnosis of autism. You’re very much left to your own devices in this country. We can only continue to do our best and hope that that is good enough in the end.
Whatever level of the autistic spectrum you’re dealing with, it is tough for the child and it is very real for the child and the parents. Our experience of autism is a positive one. Our girls have come so far and are continuing on their journey to reaching for the stars. The sky is the limit for them. Positive stories need to be told and I like to keep a positive outlook. However, the very difficult stories need also to be told. If in the media we only approach autism in the context of the positive stories then we miss the terribly harsh reality of children and parents at all ends of the spectrum.
To conclude, we all need to be more autism aware. We need to be aware of the triumphs, the struggles and the individually unique experiences that every autistic child has. We need to remember that every autistic person has their own challenges but that some have more than others. We need to, as a nation, start fighting for children who are being neglected by the state instead of leaving it up to the exhausted parents of the children that need these services to help them be as good as they can be.
We as parents are immensely proud of our girls. We would love to be able to continue to protect them into the future but that isn’t always possible and we know that it’s a hard and cruel world out there. Our job is to put in the ground work now so that as many doors as possible open for them in the future. We can’t depend on the state to do it for us as services are so limited. Our girls have a lot to offer society and as Adam Harris has said “autism certainly makes life harder – but diversity also makes societies flourish”.