Last year, a week before her fifth birthday, my beautiful daughter was diagnosed with autism spectrum disorder. She understands the world very differently. She struggles with changes to routines, has sensory issues, has balance and co-ordination issues, loves repetition, and struggles a lot in social situation, but more than any of these she mostly struggles with severe anxiety. She is anxious every minute of the day, and even through the night.
But unlike physical difficulties which can be plain to see, anxiety is a silent, hidden disability.
Can you tell from her photo she struggles so much with anxiety?
It is well-known adults can have mental health issues. Most people will know someone who seems that bit more ‘stressed’ or anxious about things than others, or who seems very low in mood. There are even medications, both prescribed and off the shelf, for adults who struggle with anxiety, sleep disorders and depression. But what about a young child whose anxiety is just as crippling, whose fears are just as genuine, and who struggles daily with stress?
For so many children with autism this is daily life. The ‘traits’ of autism manifest even more when anxiety is increased. With my daughter that means she clings to me even more, struggles even more with sleep and lines up her toys even more than normal. She withdraws into herself more and her eating becomes even more restricted. She is snappy, uninterested in life and always exhausted. Just like if an adult had no appetite, stopped sleeping, withdrew and had a low mood a doctor, or loved one, would notice something was wrong. Thousands, if not millions, of parents are watching their children struggle with the same thing and there seems to be so little help available.
We are fortunate to already have a diagnosis. We already have a team of professionals involved. Yet when my precious baby girl became so anxious at the transition of starting school she began having severe panic attacks and nose bleeds no-one seemed to know how to help her. Advice was so conflicting from keeping her off school to insisting she went to learn to face her fears. Those who observed her in the school environment reported back that her anxiety was so obvious that she spends all day chewing her tongue. She may be in a mainstream school but I know in my heart it would not matter where she was educated she would still be on constant high anxiety.
So while others have left their infants by the gate from the second day of starting school and went home crying in pride, I had to wait fifteen weeks later before my little one felt ready to take that step alone. Until then I had to hold her hand right up until the moment the school bell rang and she was lined up with all the other children.
Now she is panicking about all the changes involved in the run up to Christmas. Will I remember to come to the play, will she know what to do when her anxiety overcomes her seeing so many people watching the nativity, why are they going to a pantomime instead of doing reading and number work in school, what if a child is off and she wants to give them a Christmas card, why are they having a party, will she have to go see Santa….and so on. Real worries, real fears and causing very real stress to a just turned six-year-old.
I can reassure her. I can prepare her. But I need to balance that by not feeding her fears and allowing them to become even stronger.
She can tell me some of her worries. Many other children with autism can’t.
In two weeks time we have our first meeting with the children’s mental health team. We only got referred because ENT have completed all their tests and concluded her severe nose bleeds have no medical basis and they believe they are directly related to her anxiety. Then her panic attacks were so severe she was struggling to breathe some days. That was back in August and we are only just getting seen in December.
There are days when I hear her laugh and play and read her books to me and I wonder if this can be the same child who becomes distraught if I leave the room to use the bathroom. But you don’t always have to be sad to be stressed. You don’t always have to be house bound to be anxious. And you don’t have to be an adult to struggle with mental health.
We need to recognise that so many children with autism are struggling with anxiety. And we need to have help to support them.
That starts by realising that even when we don’t see it, anxiety is still there: the silent, hidden disability.
Can you see it? Does her anxiety look big in these pictures?
“….you don’t always have to be sad to be stressed” I need to copy this out with a brief explanation of autism and hand it to people who tut at my daughter – it’s so very true.
Brilliantly written as ever Miriam.
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That was a masterpiece in writing.
Beautiful precious girl x my son had similar anxieties in P1 and p2. He was diagnosed early in p1 with autism and we decided with the schools encouragement to keep him in mainstream school full time. During plays he used to cry on stage if he didn’t see me and cry if he did see me. He wouldn’t play in the playground and spent his breaks reading books in the school office. He regularly had screaming meltdowns, especially the weeks following holidays. After 3 years of main stream school and wonderful support he is confident, comfortable to be himself and even though that still does not mean he will interact in play with other children he is happy to play outside with them. At the last school show he stole the show by doing his own dance on the stage freestyle and he was incredibly happy, taking up a third of the stage. I had very happy tears at that sight. As we continue to hope and pray through very challenge God removes every burden that holds him back. Praying for your babies that their full potential is reached. With such a wonderful mummy and the early intervention I’m sure that will happen. God bless you and your husband as you raise these beautiful children who will make our world so much brighter. Xx
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