How would you feel if your child was diagnosed with Autism?
Two weeks ago, I had the following conversation.
Doctor: “What do you think?”
Me: “Um, I think that, yeah, sometimes he struggles to fit in to the normal conventions. I know that things that wouldn’t be a problem for others, somehow those things are, yeah, a problem for him.”
Doctor: “And what about you, do you think you have autism?”
My son: “I have no idea, maybe.”
Doctor: “Your son does show traits of autism. He has autism… He is highly functioning… words… words… more words… something kind… more words.”
Me (to myself): “Don’t cry, don’t cry, don’t cry.”
And that is the moment I heard, out loud, that my eleven-year-old son has autism. I held it together, and the professionals were kind, soft, reassuring and knowledgeable as they spoke about what this really meant for him.
A huge milestone
The news was no great surprise and I wasn’t shocked, not even a bit, but still, something in that moment stirred up huge emotions in me.
Maybe it was the agonising year wait for the assessment date.
Maybe it was the confirmation that it isn’t just ‘behaviour’, that it is no one’s fault.
Maybe it was the fact that this means I can finally help those around him to understand him better.
His mental health had been deteriorating fast as he became increasingly aware that he was ‘different’. He felt he didn’t fit in and constantly felt that is was surrounded by people who didn’t understand him and whom he didn’t understand either. Social isolation can be horrendous, especially for a child. I was worried about the idea of a label, but I realised it might help people to pre-empt and sooth when difficulties arise.
More importantly it might help him to understand that actually, there is a reason that he doesn’t see the world in the same way as others might, and that’s ok.
Me: So, what next? What do we do now?’
Doctor: Nothing changes really. He doesn’t change. He is still who he always was, only now the people around him can begin to change the way they perceive his reactions to certain situations.
Me (to myself): “Don’t cry, don’t cry, don’t cry.”
The reality of living with autism
Being a teacher for many years, I have worked with a huge number of children, all of whom are different in their own way. Their differences make them wonderful, interesting and real. But somehow, my son was different in other ways and those differences seem to make certain things in his life challenging for him to handle. Very challenging.
As a parent I have spent much of my time doing what many parents do, worrying about their children. “Will they get picked on?” “Will they eat their lunch?” “Will they achieve?” “Will they be happy? Please, let them be happy.” But with my son, it wasn’t only those worries, there were different ones too because, well, he is different.
Here are just a few of many examples.
Will they think he is rude?
My son says things how they are. Sometimes he responds in a manner which is deemed socially inappropriate. He takes things literally and doesn’t understand why he can’t say what’s on his mind. He asks the teacher “Why?” at the wrong time. He opens a Christmas present from a family member and says he doesn’t like it. He meets someone new and doesn’t respond when they say, “How are you?” The list goes on.
Will they think he is odd?
My son hates certain materials. In particular, denim or anything with too many seams and embroidery. He detests loud noises and flashing lights. Busy, loud places like pantomimes, discos and parties make him feel really stressed. This causes many issues from buying new clothes or bed sheets, to attending social events.
Will they call him a loner?
When social situations are difficult for you to understand, it’s easier to avoid them. My son spent much of his time at primary school avoiding others, sitting in his favourite spot and eating lunch alone. He wanted to be on his own. Despite this, because he is great company, he is always very popular. He does have friends and enjoys time with them, but big groups, staying at a friend’s house overnight and ‘banter’ can be a bit overwhelming for him.
Will they see his qualities?
My son is wonderful. He is funny beyond compare. He is smart. He is a talented guitarist. He sees things in a different way to most and is innovative. He loves animals. His laughter is infectious. He is honest, real and quick thinking. He is kind-hearted. I hope that people can see him for who he is, not just for his struggles or quirks, but for all of him. I worry that amongst all the differences, his qualities might be missed.
How you can support a child with autism
Despite my worries, along the way I have built up some experience of how to cope with my son’s autism. So, I hope that by sharing some tips and thoughts below, that I might help spread awareness of my experiences of high functioning autism, and if this can help even one person it would be worth my time!
- Get to know the triggers: The things that would trigger anxiety or difficulty for my son became somewhat predictable. Knowing what was going to cause an issue meant that I could either avoid or prepare for this in advance.
- Be prepared for an outburst or anxiety attack: Knowing ways to diffuse stressful situations makes you feel prepared and in control. This might be different for every child. What will calm your child? What might make things worse?
- Share what you know: You know your child. Sharing important information about their struggles with others in their lives is a great way to make sure people feel as knowledgeable as you. Grandparents, teachers or friends – let them know what to expect (or not expect in many cases!).
- Don’t be ashamed: You didn’t create this. Your child didn’t create it. There isn’t anything ‘wrong’. Children with autism are just different. If you are finding yourself apologising for your child too often and without real reason, stop it! Instead (if you want to) just explain how the situation appears through the eyes of someone with their needs. Educating others on seeing things in your child’s way is one way to raise awareness.
- Read up and talk: Reading up about autism arms you with information and further understanding. Talking to others reminds you that you’re not alone.
- Forget about it: To some extent, I just need to get over it. I know this sounds harsh, but this is what I tell myself when my worries take over. Even though things can be a lot harder, if I don’t want my son to be defined by his autism, then I need to stop thinking of his autism first. Sometimes I have found myself over worrying when really, when it came down to it, I needn’t have worried at all. Being prepared is better than being worried.
- Reasons, not excuses: Although there will be challenges for my son, I am also aware that he is still a teenage boy. He might play up. He might push boundaries. I will always aim to separate his autistic traits from what is something else. I still expect him to grow into a gentleman. Even though at times there may be reasons for him becoming overwhelmed, there will never be an excuse for him to lose his way in relation to being respectful or doing what it right. I will continue to teach him consequences and right from wrong, because that is my job.
- Focus on the good: Every child is unique. Embrace, enjoy and celebrate your child’s ways. Be proud of them and of yourself. When I look at my son and see how amazing he is, I shine with pride for him; and for myself too.
Although I have spent the last two weeks getting my head around my son’s diagnosis, I have already spent the last eleven years getting my head around his ways; the diagnosis is new, he isn’t. It’s not been easy, but every moment has taught me something and I wouldn’t change him for the world. Maybe its time the world changed its view of autism instead.
The 2nd April is World Autism Awareness day and April is Autism Awareness Month. You can find more information about how to take part and how to recognise and support children with Autism on their website.