Waiting for an autism diagnosis can be a lonely, isolating experience with waiting times often well over 12 months. Awaiting diagnosis for a daughter is even more complicated as girls can present differently to boys and are a missed, misdiagnosed and misunderstood demographic.
Gemma Gray found herself in this situation while awaiting her daughter’s autism assessment and felt increasingly disempowered and desperate. She needed a specific support group that dealt with the needs of autistic girls and their families – none existed, so she set one up.
Starting as a blog in February 2016, other parents got in touch and the Facebook group was born (a private group run by a team of volunteer admins). As more and more connections were made, especially in Scotland, Gemma suggested meet-ups for the group members and their daughters in the Edinburgh area.
Colouring Outside The Lines therefore has a global community online and a supportive face-to-face community in Edinburgh both of which provide tailored, immediate support for autistic girls and their families.
There are two key aims to Colouring Outside The Lines: by being focussed in this regard, it ensures greater effectiveness, relevance and ability to really make a positive impact to people’s lives.
Aim 1: To provide autism-positive peer-to-peer support and advice for parents of autistic girls (and those awaiting ‘diagnosis’). We embrace the opinions of the autistic community and know that only through collaboration and education can we be the best parents we can be for our autistic daughters.
Aim 2: Organise inspiring meet-up opportunities for autistic girls themselves in the Edinburgh area to widen their circle of friends and minimise the impact of social isolation that many can feel from time to time. Examples: Group dog walks, science sessions, weekly youth group run with Barnardos, early opening events at the National Museum and Edinburgh University Open Day.
“Before we joined COTL, my autistic daughter did not have a peer group and has great difficulty mixing and socialising with others. Now she is able to look forward to meeting up with other autistic girls, being part of a group whether to go on a dog walk, picnic, or to a museum. She no longer feels alone and nor do I.”
In the local Edinburgh community, we have filled a void, brightened the future for autistic girls and made more and more companies and organisations aware of what they can do to support autistic women and girls in their community. We aim to continue to get local Edinburgh businesses to appreciate what they could do to embrace the autistic community whilst also breaking down the existing stereotype of autistic people.
When running events for the girls, it became clear that many of the parents also wanted to simply meet other parents and chat so a range of regular face-to-face meet-ups take place from Mindfulness sessions to nights out so they can share experiences with like-minded individuals who understand.
COTL continues to be run by a group of dedicated volunteers very much led by the Founder, Gemma Gray. As we now have over 3,000 members of our Facebook group, the administration duties requires a clear focus on our autism-positive approach and ensuring that members take the time to learn from each other.
Call to action
Edinburgh and Scotland have an opportunity to make a huge collective difference to the lives of autistic women and girls. We would urge the following next steps:
- Parents of autistic girls – get in touch, join our community and be part of a supportive network.
- Autistic females – consider assisting us with our ‘Ask the Expert’ series where we ask autistic women to answer questions from our members to assist them as parents of autistic girls.
- Business owners/tourist attractions – consider hosting a Quiet Hour event for our girls. As many of the girls find excessive noise and busyness a huge barrier to social interaction, with small changes, you can make a huge impact. Join Edinburgh University and the National Museum of Scotland in making small changes to create a big difference.
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