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'!
Hi, I don't want my reply to scare you, it is intended to be helpful but it's a bit of a warning. My daughter, who is now 18 has always been an anxious child but round about the time she first started studying for her GCSE's (14/15yrs) she became noticeably more anxious. Her eating became picky and difficult and we couldn't get her to eat. To cut a long story short she ended up in hospital for 9 weeks then an inpatient at a CAHMS Tier 4 unit for 29 months, where she was diagnosed with anorexia (which we obviously knew) and assessed for ASD. Whether you go private or through CAHMS you need to get some help for the anorexia because for people with ASD it is much more difficult to treat. The CAHMS unit traumatised my lovely daughter where she was restrained and tube fed on occasions. Although they have experience of ASD they have no guidelines for modifying the treatment for anorexia with convenor ASD. There is a place in York and London that has better knowledge. BUT my message to you is get help NOW with the eating because people with ASD are very good at sticking to rules and hence good at restricting. It will only get worse if you don't take action now.
With regard to the ASD my daughter has accepted it without question and in some respects it has helped her. She wears noise canceling head phones in noisy places but hey what teenager doesn't wear headphones these days, so she doesn't feel odd in them. The bullying is a difficult one but you should certainly be taking this up with her school. Also, contact the SEN coordinator at school as they should be able to make provision for her where she struggles but SEN support is very variable from school to school. My daughter never had any as she ended up going to the school attached to the CAHMS unit and only achieved 3 GCSE's due to her mental health issues ; she was in the able and talented form at school and expected to do extremely well.
When she was an inpatient we took the decision to let her follow her passion and she enrolled in a Wildlife Conservation course many miles from home. Despite the impact on my husband and my working life, as we have to take her to college every day, it is the best decision we made. She has excelled, and although she has not made any close friends the rest of the group have embraced her and included her in things even though she struggles to chat to them much (they are aware of her struggles).
GCSE's will be a struggle I think for your daughter. Actually I'll rephrase that, doing GCSE's at a mainstream school will be a struggle for your daughter. Many teenage girls are truly horrible to those that don't fit their perceived 'norm'. Now my daughter is at college she can be herself without horrible teenage girls bullying. Having ASD isn't all bad. It has given my daughter a deep passion for wildlife conservation and she has an amazing memory for anything to do with birds. I encourage my daughter to just be herself and not try and be like the other sheep. It's not easy, she still struggles with self esteem, anxiety and eating but we are ploughing through.
With the anorexia she has found that weight training helps. The CAHMS unit would faint with horror if they heard this but people with ASD do not respond to their inflexible treatment. I have her gym training under control as I have got her a personal trainer and it helps her with her body image. She knows she must eat enough protein and carbs to build muscle not fat and I will cancel the personal trainer if it all gets out of hand.
There is a link between anorexia and ASD. Approximately 20% of people with anorexia are believed to have ASD. I went to an NAS conference on this last November but although the link is now recognised research in to alternative treatment has only just started.
Incidentally, during my daughter's assessment for ASD it came to light that her older brother had some classical ASD traits. He went for an assessment at his University and was diagnosed aged 19 (now 21).
Sorry for long winded reply but my message is don't be disheartened but do fight for all the help you can get and do it NOW. You will have to fight for it, it is a constant battle. The very best of luck. x