Published on 12, July, 2020
Hello,
I'm new to the forum. I've come here looking for advice as my stepdaughter was diagnosed last week by a private psychology practice after a very long and difficult journey. She has always struggled socially and been very anxious and had other symptoms, I suppose, but I have to admit my husband and I have always been quite ignorant about autism, up until this process we thought we knew what it was and what it meant but it turns out we hadn't a clue. We certainly didn't know that it affects girls differently to how it affects boys and that girls often cover it up so well, but now we do, and we see that she had so many signs all along, although we put this down to all sorts of things, one of which being her losing her mother at such an early age. We've got a close family friend who is a psychotherapist and she suggested it might be this but instinctively we sort of knew this wasn't it (she was 7 months old when her mother passed away so doesn't actively remember her at all) or wasn't all of it at least. My husband and I feel dreadful that we didn't get look into this sooner but we did the best we could. Anyway, her anxiety reached a real crisis point and with CAMHS being unhelpful (to say the least!) we eventually found a private psychiatrist, a very switched on man who said he was seeing more and more girls like this and referred us to the psychology practice for autism assessment, and here we are now. We went to the follow up session where we were giving the diagnosis, and it was devastating, she cried and cried and said she was a failure and that she hated herself. We went through most of the poor psychologist's tissues mopping her up and we told her again and again that we love her exactly as she is and that the only thing this diagnosis is going to change is that it should help her understand herself better and get her some more support. However she hasn't taken this in, tomorrow it will have been a week and she's spending most of the time in her room, not really eating properly or engaging with any of us if she can help it. We've tried everything but we can't seem to get through to her at all.
She is extremely special to me as, as I mentioned, her mother passed away when she was a baby and my daughters and I started living with my husband and his children (her and her brothers and sister) when she was only 3 years old, so I have brought her up as my own really. I don't mind about her being different in itself...she is a wonderful human being, highly intelligent, funny and very kind and I am extremely proud of her whatever label she might have attached to her, however all my husband and I want is for her to be happy and her challenges haven't made her happy, they've made her very unhappy. She's faced utterly horrific bullying at school, she has no real friends, she self harms which completely breaks my heart, she is so beautiful and to see her abuse her body in such a way is awful. She struggles with food as well - we have such terrible fights at mealtimes and I worry about it turning into full blown anorexia, she's very thin and naturally small anyway (she's probably underweight, but we truly do the best we can with her eating....you just can't force feed a 15-year-old!). We've had to seek treatment privately as CAMHS were utterly useless, their treatment of us made her self esteem even worse than it already was, my husband and I are absolutely livid but we haven't heard many good reports of CAMHS so at least we know it isn't personal. She has taken it very personally though, and there's nothing we can say to make her think otherwise...she is very rigid in her thinking and once she has made her mind up about something, there is no changing it. My husband and I lie awake at night worrying about her and her future and the very real-seeming possibility of her mental health deteriorating further and us not being able to manage. She is the only child we've got at home at the moment...my daughters and stepsons and other stepdaughter have all flown the nest, so at least we can give her lots of time and attention, but we can't help thinking that she has her GCSEs coming up this year and she has the academic potential to do very well but I'm not sure she'll cope psychologically. We are worried sick about her going back to school for all the social reasons, the bullying which springs up all the time, we have spoken to the school on lots of occasions and they have spoken to various children but there just seems to be mean comments and actions coming from everywhere and it's very hard to stop it. I don't quite know where she finds the courage to go in every day, but I do know she's dreading going back, and we're dreading it for her, especially knowing there is now going to be the added academic pressure.
I'm sorry, I feel like I've really spilled my thoughts out here! Having a few tears but I suppose that's natural and healthy. I suppose I just wondered if anyone had any experience or strategies for how to support a newly diagnosed teenager. Are there any resources for girls in particular? She hasn't heard of any other girls with autism and the one time she has opened up since being diagnosed was to say how it makes her feel unfeminine, maybe hearing about other girls might help her with this misconception at least. Any ideas/virtual hugs would be greatly appreciated.
Thank you very much for 'listening'!
Hello
ALOT of your post resonated with me. I’m 18 now and was only diagnosed with ASD this year. My secondary school years were horrendous too so I can completely empathise. I too struggled massively with anxiety, social anxiety and restrictive eating, but it was all put down to mental health rather than ASD. And I’m going to be honest I’d have given ANYTHING to have been given an ASD diagnosis back then. I would urge your stepdaughter to see her diagnosis as a massive opening of doors to support. If she’s struggling now, that means she’s entitled to far more support which will hopefully make her final years at school more bearable. I have just come back from a horrendous first year of uni, but now I have this diagnosis, SO many opportunities of support have been made available to me and I feel so much more relaxed about starting my second year.
She and I both have stories VERY similar to teenage girls with ASD. I cannot believe how I keep reading the same thing over and over again. So she really is not alone. For me, my ASD diagnosis has actually been a confidence boost. I finally understand why I find some things difficult, and it’s given me the courage to self advocate rather than feel inadequate. E.g. It’s not my fault I find it hard to understand an essay question, it’s the lecturer’s responsibility to make it clear for me! It’s helped me finally understand myself and therefore figure out better coping strategies.
Im afraid I can’t help with the bullying except to say to her that it will pass. Soon she won’t have to go to school and won’t have to see them again. And she has done nothing wrong to deserve such horrendous treatment, teenagers are just cruel.
My heart really goes out to her, and wish her a happy future. My biggest advice would be to research traits of female autism. Because I was hesitant about my diagnosis at first, but since doing research and finding how much it resonates with me, I feel so much more comfortable and accepting of it. It’s just who I am. A great book is “girls and autism” by Barry Carpenter, Francesca Happé and Jo Egerton. If it helps to give myself as an example of an autistic girl, I wear makeup, am able to talk to adults in a mature way, I’ve made it to university and am studying what I love, so she needn’t stereotype herself as an archetypal autistic boy :)