Published on 12, July, 2020
Hi just joined. Hoping to glean as much information as possible to help my daughter. It’s been a tough 7 years with all sorts of diagnoses which didn’t quite fit. The thing I am most bitter about is the fact that psychiatrists, following guidelines, are told that eye contact is the be all and end all. I tried for years to get them to acknowledge her autistic traits but was always told her eye contact was fine. How come I could do a 2 second google search to find out that eye contact is NOT the be all and end all. I’m so utterly devastated for her. She’s been on antidepressants and ended up on quetiapine which is a disgusting drug which just made her into a zombie and left her very overweight and with dreadful reflux. And I had to take her out of school at 15 because she couldn’t cope. She couldn’t even write her name anymore when she left school as she was so damaged. So she has no qualifications and no confidence still to even think about it. She can’t work because she can’t commit. Just day to day life is hard doing nothing. I’m hoping the diagnosis will help but it’s only been a couple of weeks.
Terribly sorry to hear what your daughter has had to go through. I found this free online module on autism in women and girls really useful:
www.autism.org.uk/.../women-and-girls.aspx
If only more health and social care professionals would educate themselves about how autism presents in women. I have just been diagnosed with ASD at the age of 58 - I can remember how tough things were when I was your daughter's age and my heart goes out to her.
I have found the resources produced by Alis Rowe (Girl with the Curly Hair) very useful too. These were recommended to me by my psychologist:
thegirlwiththecurlyhair.co.uk/.../
Thanks so much for that I will definitely look into that. Oh my 58?! It’s not unusual though is it. But so not fair when you think you could have had understanding earlier. Keep talking and learning. Knowledge is power I’m sure.
Sadly it's not unusual for autistic women of my age to get a diagnosis very late, or not at all. In the end I went round my GP, not through him, to get a diagnosis. Time is precious and a two year wait was far too long.
I qualified as a social worker and worked with autisitic people in mental health services earlier in my career. I often seemed to have more insight into the struggles and challenges they faced than many of my colleagues - now I know why.
The only person to recognise me as autistic and tell me this before my diagnosis was a service user I worked with at an autism charity. None of my colleagues there ever said anything to suggest I might be autistic!
It is a sad indictment of our health and social care services that so many people (especially women) have to diagnose themselves as autistic before anyone else will give this possibility serious consideration.
AQ and EQ schedules can be completed quickly and easily and should be standard screening tools where people present to GPs with persistent relationship, communication or employment difficulties, and mental distress.