Getting a diagnosis for autism spectrum disorder can be unexpectedly challenging for girls, as Becky, 11, has discovered.
This is her story, as told by mum Vanessa.
Becky is bright and intelligent but struggles socially and finds it difficult to make and keep friends. She has issues around anxiety and anger, and struggles to verbalise both due to her autism. This can be very frustrating and lead to her losing control. She also has sensory processing issues, dyspraxia and sleep issues which affect all aspects of her life.
But, like many girls on the spectrum, Becky’s difficulties weren’t recognised by professionals. This meant that getting a diagnosis and support has been a huge battle. I feel my concerns were consistently dismissed. As a result, she wasn’t diagnosed until half way through Year 5. She went through most of primary school without teachers fully understanding her needs and putting in appropriate support. I had to try to work things out on my own and, without professional advice and support, had to try to develop our own strategies.
Autism is such a complex, difficult neurological condition, parents need to be able to research and learn about it and find out about local support groups and charities. But there are no real courses for parents to go on, or they’re not available at the right times, evenings or weekends.
With the right support in place before she started school, I feel that Becky would have been better prepared to manage her anxieties around social situations and would have been better able to make friends.
Becky now has an EHC (Education, Health and Care) plan, which gives her 22.5 hours support a week in school. But this doesn’t include support outside of education, to help her to develop her social and life skills outside of school. I want professionals to understand the different ways autism can affect women and girls, and review their procedures so other families won’t face the difficulties they have.
Daily life with Becky can be challenging and stressful. But with autism, her outlook and way of thinking can make life interesting, even quirky. Becky loves attending her social communication group. She also enjoys going to the beach with us. She likes going to the cinema as a family, especially if we go out to dinner afterwards, and she does like to shop, especially when we do girlie shopping.
We have odd looks from people when Becky has displayed autistic behaviour in public. Becky can also find some environments, specifically restaurants, difficult to handle and usually has to leave. In some very busy shops, like shoe shops, Becky’s behaviour can seem odd. On many occasions I have had to explain why she is doing what she is doing. I am on guard all the time. If the public had a greater awareness of autism, they would have greater understanding, patience and empathy and accept the behaviours as a norm. I think when a diagnosis is being sought, parents need to be given more information. When they have a diagnosis, as in our case, we were left hanging and that whilst recommendations were made, it was up to us to go and find it.
There seems to be no follow-on process – you get diagnosis and that’s it. That’s what it felt like, and it’s something I have heard a lot. It’s not joined up. Unless you have the time or resources to know where to look it, it’s like being in a wilderness.
This is the part of our life that most people simply do not see.
This is the Secret Life of Us.