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 Farm girl,
my heart goes out to you and your family x
my daughter was diagnosed at 14 and is now 16. she did not expect the diagnosis and wrote t.w.a.t. on her forehead in marker pen.
school is definately not designed for autistic girls! we were lucky we had good pastoral support but i did consider homeschooling so she didnt have to go through the terror that can be school!
she was awarded dla and this helped fund music lessons- her strength passion and obsession! hopefully college will be better- she is studying something she enjoys with people who have similar interests.
friendships are a massive issue with autistic girls- she has a couple of friends she meets on her terms ie not very often. she has chosen not to tell anyone about her diagnosis- she is ashamed, but luckily a couple of girls accept her the way she is.
teenage years are tricky for all children but the hormone changes can elevate sensory issues.
alis rowe seems a good name to google is you havent already.
we have learrnt to expect the unexpected, support her passions as much as you can and do what you are doing...just be there. my daughter says i am the one thing in her life that doesnt change.
many girls on the spectrum like the arts/animals/theatre ( to generalize) and actually you would likely find girls with similar difficulties in life ( many undiagnosed)
you say your daughter is in her gcse year- the good thing about this is that the year is shorter. however schools tend to thoughtfully rejiggle and chop and change the whole timetable. this can lead to mega disruption to our children. let her study at home rather than go to school when you can. try and avoid 6th form if you can!
if she doesnt get her gsces this year it doesnt matter...its not a race!
things should improve in time... a colleague told me that my daughter would be fine because she had me as a mum.
same for you!
xxxx
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 :)
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.
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
H
Hi, have you considered getting any support from the SEN team at her school so that they can try and help support her with her studies and also friendships. If she really struggles with school then why not talk with the SEN team about her going to a special needs school instead.
Different neurotype!
hi there
I myself am an autistic teenage girl and I really hope that your child feels better soon and learns to love herself. I don't know if reaching out to others will help her or not, but it helped me, and sometimes knowing that you aren't alone can really make you feel like less of an outsider. Maybe she could look into forums like this for support if she feels comfortable? or maybe she could look into some of the more positive aspects of autism?
All the best
Becca
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.