Autism from the point of view of our girls

As a parent filling out forms for formal autism diagnosis, Disability Living Allowance, EHCPs and other things which will eventually bring help for your child, it is easy to get bogged down in the negative language of deficits and difficulties.

In order to get the help your child needs, you have to write about all of the things which they struggle with or which are not the same as their peers. But your child is not just the sum of their struggles – they have unique and amazing qualities too. They are the same amazing and unique child that they were the day before the day before you filled out that form, and their strengths have not gone away just because you have had to document their worst day or their worst struggle.

So much out there is written from the point of view of the parents or carers of autistic children, or by autistic adults, but not as much has been written from the point of view of autistic children themselves. We asked the girls whose parents are part of our NeonDaisy Facebook community what they would most like the world to know about being an autistic girl.

Here are some of the responses:

“Despite being autistic, we are still ordinary people. And we just see things slightly different.”

“About the communication difficulties. I may not know what to say or how to say it, I may not look at you when I speak, or say relevant things, or I may just talk about random things and not know how to have to a fro conversation, and I'll probably never ask you a question about yourself but it's still important to me to have friends and be included. I'll walk away if I need space.”

“It’s ok to be different. You’re not different, you’re special. You don’t have to be trying to be someone you’re not. Just be YOU.”

Other sites you might find interesting

There are a number of blogs and pages on social media sites which are run by autistic girls and their families. Here are just a few:

• I am Cadence is a web page run by a girl and her family, with a mixture of posts by the parents and by Cadence herself. Cadence is non-verbal but is able to communicate in other ways, and it is fascinating to read about how she interacts with others and her thoughts on being autistic. The page also discusses the difference between intellectual disability and being non-verbal, which is really interesting.

• The Secret Life of Rose is a YouTube channel featuring a girl called Rose and her family. There is a book of the same name. Rose uses this to explain how she thinks and feels differently from other children. My daughter found this book very helpful.

• My Autistic Sparkle is a YouTube channel and Facebook page run by a very vivacious girl called Sparkle and her family.

There are probably a lot more pages out there, and we will feature them in later blog posts!

Autism Survey

A survey was done in 2016 by Chris Bonnello, author, blogger and autistic speaker, which was compiled into a book, What we love most about life. Sadly, this book is no longer in print but may still be available from the author’s website. Over 150 children from all over the world were asked this question and the answers are beautiful, including such gems as this one from a 14 year old girl called Sherin, who wrote:

‘My mysterious journey with my autism is what I love most about my life. It makes me look like a superhero and a stupid at the same time. Most people think I really do not have any goals in my life but sure I do have a wish. Writing gives wings to my thoughts. My autism gives my pen the power to use my so-called disability to enable my fellow beings to live a meaningful life. Our world becomes only richer by the thoughts of autistic people.’ Sherin runs a fantastic website called Musings of Sherin which includes beautiful poems and other writings.

Nine-year-old Phoebe wrote: ‘I love being me and I like doing things and love playing with friends and making friends, but most of all I love to be with my family.

The answers were so positive and so varied, that it shouts the message that the children featured do not see their autism as a terrible blight on their lives that needs to be overcome, but as a uniqueness to be embraced and celebrated. And we should celebrate their uniqueness with them.

Laura Webb is a director of NeonDaisy