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, in a bit of a different situation to you as I’m a woman recently diagnosed with ASD (very) late! However I’ve done lots of reading since diagnosis. There are books aimed at teenage girls. There is aspergirls, there are a couple of novels written by the girls of Limpsfield grange (m is for autism is one I think). There are also quite a few young women who have done YouTube videos and tweet etc. Definitely encourage her to have a look/read. I’m sure it’s been a massive shock to her but she may find it reassuring to know there are others who are similar to her. Also it definitely does not have to stop her doing whatever she wants and hopefully now she’ll have the support to do it. There are autistic women in careers as diverse as tv, education, civil service, autism professionals. Twitter has told me this! Oh yeah and the very very awesome Greta Thunberg is autistic!
She’s bound to be shocked and find it difficult at times, it’s been a bit of a roller coaster for me and I’m an adult. Ultimately though being autistic is simply a different neurotics. We see things differently and find some things harder than most. But heats the thing. We can do other things better! Generally you only get told the negatives during diagnosis. I think you and she need to hear the positives too.
Different neurotype!
Thank you so much for your reply, it's really helped to hear some positivity. I have mentioned about Greta Thunberg and all the many amazing people who are and have been on the spectrum but it doesn't help her as much as it helps me and my husband. After your post I have told her to have a look on social media, she's said she'll do it in her own time, but I had a look and found it really reassuring, although I was never in any doubt that autistic people can be truly amazing. We're really hoping her painful feelings will subside with time and she'll eventually be able to have a more open mind about all this and feel a lot better about life, after all she's at a very difficult age anyway. We're just hoping that we can keep her safe and well in the meantime. Thank you so much again for your support.