After coming across brick walls, blank looks, shrugs of shoulders and answer machines about full waiting lists, my husband and I felt adrift at sea without a compass, map or a blinking clue where we were going. So, I cannot explain the sense of relief we felt after chatting to Dr Catriona Stewart of SWAN (Scottish Women’s Autism Network) at her weekly Neurodiversity clinic at Napier’s in Glasgow.
We have told our story to professionals many times and the emotions always well up when we realise the sheer enormity of what we are dealing with but, with Dr Stewart it felt very different. She knew what we were talking about, she understood the cycle of anger that led to our daughter’s meltdowns (or ‘overloads’ as Dr Stewart refers to them), she appreciated that every minute of our waking life is affected and she empathised that our little girl finds every single day of her life tough.
Because here was someone who KNEW what we were talking about, she shared our concerns, worries, frustrations and bewilderment, she could relate and could reassure that no, we weren’t going mad, yes it is insulting when people suggest you go on a parenting course instead of looking into your child’s mental state a bit closer and she gave wonderful, honest advice. Nothing was sugar-coated (which was appreciated), everything was positive, she made us feel hopeful but also stressed that resources pre and post ‘diagnosis’ are very poor for high-functioning #Asperger’s girls.
There were three key things we took away from this meeting (other than the fact that here was a woman who cared and though her own experiences could help):
- We realised that whatever the ‘diagnosis’, it will be with our daughter for the rest of her life. There is no quick fix, there is no easy solution, there is a long, hard road ahead of us all. But, there is joy, love and laughter in that journey.
- We had to start helping ourselves, taking action and fighting for what we believe in – our daughter.
- There are other people out there who are going through the same thing – we are NOT alone.
For the first time in many, many months, I felt empowered (others thought I had gone a bit manic!), I had energy, focus and determination. So, we came home and set up this blog with the sole aim of finding others like us and seeing if we can help each other just a little bit.
Pretty soon I will share with you the communications I have been having with my MP and The Scottish Minister for Sport, Health Improvement and Mental Health but until I do, here is a little food for thought… SWAN does an amazing job and is a vital resource for women with Autism (but does not receive enough funding to do everything they want to do) and wouldn’t it be wonderful if one day, there is a group for young Asperger’s or Autistic girls too?