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.
Hi - I've just joined as well and can really relate to your daughter; I got diagnosed when I was 15 (the week before I was 16) after a lot of mental health issues (and to be honest I have never heard of it going any other way for any other girls; every girl I know with a diagnosis had mental health issues first). The eye contact thing winds me up so much -- it's a barrier between so many people and the explanations they need and deserve. It's so ignorant and doesn't acknowledge that many autistic people, particularly girls (sorry for the generalisation, but it is true!) have learned to mask their symptoms in order to survive. I've been on quetiapine for four years following a comorbid psychotic episode, and whilst the side effects are rough and it hasn't helped with my weight problems, it has changed my life and I am able to cope a lot better; if I don't take it I soon know it! But I'm so sorry it didn't work out for your daughter. I don't think people understand how traumatic school is for autistic young people -- sometimes I get angry and very upset that my parents kept pushing me to go into school because it's left me with emotional scars that I don't think will ever heal, but I think that the way I dealt with things was also to push myself a bit too hard to go in; we all deal with things differently. I'm also still working on how I feel about being diagnosed; I still find it extremely hard and am trying to accept it, and it's only natural for this to take a long time, especially when you get a diagnosis when you're a bit older, so be prepared that your daughter might go through a sort of 'grieving process' and might find it hard to accept and be 'OK' with for a while...all you can do is listen to her and be there to support her, which it sounds like you're doing anyway.
In spite of everything, I'm now 22, at university (and while I have found a lot of things about being at uni difficult, my experience hasn't been compromised: I'm in my first term and have managed to get good grades and have a social life as well; I love partying! Living in halls is tough, but I have survived so far!) and I'm getting a short collection of poetry published soon: this sort of thing was impossible for me when I was your daughter's age. I was extremely ill and my life was very limited and I hated myself and didn't want to be alive at all. I don't know you or your daughter but please don't lose faith: there will always be pain but things can change for the better. What I would suggest you do is try and engage her in an activity that she enjoys: I was 19 when I got properly engaged in writing, which was something I'd enjoyed all my life, and out of luck I met the right people, made some incredible writer friends and mentors, became a published poet and now my life is transformed. I've still got a long way to go, but it's done absolute wonders for my self-esteem and it's given me an identity and a purpose, and it's a story I can tell people with a lot of pride. When you find something you truly love, it changes everything. I'm sure she has some incredible talents; as her mum, you can be her number one fan and, even when her low self-esteem is too much for her and feels she can't do anything, you can be the one who reminds her how special she is to spur her on. Reassure her that she's doing great and that you love her to bits. While she'll always have challenges like anyone with any disability, it's not going to be like this forever.
Much love -- my thoughts are with you both.
Oh my goodness. You write with such intelligence you smart girl. I’m tearing up here. In a good way. I’m going to re-read this several times. I pushed my daughter into school cos I didn’t know any different. I hate myself for it. And wished I’d home educated her. I have so many regrets. School nowadays is not a place for you sensitive clever souls. Quetiapine did allow my daughter to socialise better! That was the only positive. Sounds like you are managing well on it and able to be creative which is wonderful. Thank you so much for taking the time to write this. I’ll show my daughter too xx