Published on 12, July, 2020
Hi everyone. I've decided to join this community in the hope that I can find some people who are in a similar place in time to me. My gorgeous girl was diagnosed ASD a month ago. We first got referred to CAMHS a year ago after her anxiety started getting really bad and since then things have gone from bad to worse, culminating in her having what I would describe as a mental breakdown a few months ago following the breakdown of her main friendship she'd had since she was 3. Since then she has not managed to attend school (for a whole term) and now that she's having weekly CAMHS appointments things are slowly starting to improve (maybe). Despite the fact that I had suspected autism for a few years(unlike any other members of my family including my husband) I am surprising myself as to how difficult I'm finding coming to terms with the diagnosis. I feel very confused, angry for some reason, and questioning everything that's gone before. I used to see my lovely daughter as being individual and having her quirks which I'd instinctively accepted and adapted to; now I just seem see the ASD and it colours everything. I feel guilt that I didn't realise sooner and get her an earlier diagnosis, but I also wish in a way that I didn't know because life could then just carry on as normal-although I know that's not possible as the last few months have been SO difficult that there is no normal anymore. I feel so confused because she seems to have got so much more 'autistic' and I don't understand how that's possible when it's a lifelong condition. I do understand really: that there's many pieces of a puzzle that have come together to create the 'perfect storm'; the breakdown of her friendship which was the scaffolding of her life, the world getting too complicated for her, the early onset of puberty. She just finds life so very hard now and it's breaking my heart to see it. Plus I have been at home with her 24/7 the last few months while she's been in a really bad way-sometimes not getting out of bed at all, sometimes finding even brushing her teeth too much effort, struggling to leave the house even to walk the dog. And coupled with the fact that I've been getting daily physical and verbal abuse from her. I feel I'm running out of strength with it all. Sorry for the ramble. Sara x
Hi Stronger mum,
I wanted to respond to the difficult feelings you are currently having about coming to terms with your daughters diagnosis.
Receiving a diagnosis for your child can be a very emotional experience, and I think that it is perfectly natural to go through a surreal kind of mourning where anger, shock, denial, guilt and grief are very common parts of that. So please be extra kind to yourself and accept that, over the coming year, you really will need some time to adjust.
Early stages of that mourning process can include a kind of ‘hypervigilance,’ where ‘everything becomes ASD’ just as you have described is currently happening to you. Therefore I doubt your daughter has become more Autistic recently, I think it possible that it is simply that you are now recognising the possible signs of her Autism more frequently now you have been recently alerted to its presence by her diagnosis.
Examples of this ‘hypervigilance’ could be that, due to the diagnosis, aspects of your daughter your previously simply thought of as her ‘quirks’ become the focus of your attention as you constantly rack your brain trying to work out if they are quirks, if they are ASD, or if they are something else. In addition, a diagnosis can also a knock your confidence as a parent, and you may go through a process of putting everything your daughter does ‘under the microscope’ as you re-evaluate everything you thought you knew about her, such as ‘has she always been like this, (is the diagnosis right, is it wrong,) why didn’t I know, why didn’t I see…’ in light of the new information (diagnosis) that you all, as a family, have now recently received.
Please be reassured that this ‘ASD focus’ won’t last forever, and in time you will once again be able to relax back into a relationship with your daughter where you will be able to see her as a whole person once again and not a ‘walking diagnosis.’ And your daughter will become just your normal daughter once again. Her quirks may become ‘ASD quirks’ in future, but they are still HER personal quirks, just the same as you have always known her (and them) to be. This process just takes time.
I know that some ND (NeuroDiverse) individuals can feel very hurt at the thought of parents going through a kind of ‘mourning’ process after their child’s diagnosis. However, I think it is best to be very kind to parents during this time, who are usually not mourning their lost ‘ideal’ child as such, but are simply trying to come to terms with what is often a very big shock. And therefore, in my experience, parents may mourn for the child (the relationship) they thought they knew so well, and not, as some may misinterpret, simply mourning for a child who is not ASD. While also doing their very best to learn how to understand, accept (and help) aspects of their child they previously didn’t know existed.
Give yourself some time.
Best of luck.
Hi Angeldust,
apologies as I've only just seen your message and I want to say thank you from the bottom of my heart for your very kind and wise words, it really means a lot. I don't know how but you have described how I am feeling so perfectly it's like you were inside my head! I am guessing that you have been through similar feelings yourself? Thanks so much again, it helps to know these feelings are normal.
best wishes to you