I have to admit, when my daughter was first diagnosed at the age of 8, I had a pretty narrow view of Autism. I really didn’t know much and I definitely did not know that autism was experienced by boys more than by girls (at a ratio of 4:1) or that girls are often not diagnosed until their tween of teen years – which can mean that many years of support and intervention have been missed.
As a Mom new to this, I felt many emotions – relief that we had an answer, worry about how her life would turn out and questions about how I could help her. Her psychologist told us after we received the diagnosis that we would soon become experts on autism spectrum disorder. While I have a far way to go to becoming an expert, I have realized that knowledge will certainly help me to be a better advocate for my daughter. I do not have all the answers, and that’s okay and many days I feel so lost. While there are many great supports out there, it isn’t always a clear path to finding out what is available that could be helpful. Some of the resources I have learned about have just been by happenstance – I was in the right place, at the right time.
It was at first believed that autism really did not affect women. When Dr. Asperger first started researching this developmental issue, he was only looking at boys. The diagnostic tools that were then developed were geared around diagnosing boys specifically. It has only been in the last 20 years that more research has been done looking specifically at how autism affects girls and women.
In the short time since my daughter’s diagnosis I have already had several people comment to me when I have told them about my daughter’s diagnosis that “She doesn’t ‘look’ like she has autism”. Girls are often much better at masking their symptoms when they are at school or in public and for many, these symptoms are not evident until they reach their teen years and puberty sets in. Girls socialize quite differently from boys and girls on the spectrum often find it hard to keep up with their peers. Social isolation is felt more acutely and depression and anxiety are often experienced.
Having an older neurotypical daughter and observing her range of emotions as she has moved through puberty has caused me concern for my daughter on the spectrum. How can I help her through this tough time? I am hoping that by finding the right resources now, I can help to make that transition a bit easier for her.
A few weeks ago, I decided to take things into my own hands and set up a drop-in program for girls on the spectrum and their parents here in Ottawa. The first drop-in does not take place for another 2 weeks but I have already received great support on this initiative. The drop-in will be a safe place where girls can interact with each other, try different activities and will provide an opportunity for parents and caregivers to support one another. My church, Orleans United, has very generously offered me space to get the program off the ground. If you live in the Ottawa, Ontario area and are interested in the Girls on the Spectrum drop-in, please do not hesitate to get in touch with me (firstname.lastname@example.org).
All the best,