Published on 12, July, 2020
Hi there,
I was wondering if people had any advice or experience to share regarding my 16 year old daughter. She was diagnosed with high-functioning autism / ASD / Asperger’s a few months ago.
Annie has always struggled at school - we went through phases of her being quite bossy, aggressive, demand-avoidant, with frequent meltdowns as a small child to becoming the studious girl at the back of the class, polite, quietly confident and getting top grades, but still quite isolated from her peers.
Things at secondary school didn't work out great… the environment was completely overwhelming, though she kept her chin up for a long time. Long story short, she became extremely low (talking/planning suicide), completely withdrew in class from any sort of friendships she had with people, started having anxiety attacks / meltdowns every Sunday evening at the prospect of returning to school. We decided to scrape the funds together and put her in private school (this was halfway through y10). Problems seemed to solve themselves for a while - Annie loved the teachers and environment and everyone was really nice… then lockdown hit! The lockdown itself was bliss for Annie, but the transition back to school was very difficult. I think the fact it was GCSE year helped her hold it together - she made it through the year and smashed the exams with straight 9s, but the complete lack of structure of the summer triggered a mental breakdown and rock-bottom depression which had probably been waiting to happen for a while. She was having frequent meltdowns, controlling her food, self-harming and had zero motivation to do anything. This got even worse going back to school for sixth form, though they are very understanding about her needs/diagnosis, but she is finding it increasingly difficult to attend.
At the moment, she has been off school for the last week (and things are continuing to spiral down), staying in bed all day in her imaginary worlds. She seems to oscillate between reclusive shutdowns where she won’t speak more than a few words to me for days and manic episodes of hysteria (where she stammers and talks nonsense and seems to be seeing things that aren’t there, I suspect more imaginary than hallucinations).
Was wondering if anyone had any similar experiences to share? She is a very bright girl and has her heart set on studying physics at Oxford, but right now the pressures of the school day drain all her energy and she’s falling behind in class.
We don’t know whether to move schools, homeschool, take a break and repeat a year, or keep pushing through with things as they are… any thoughts? From what I’ve heard Annie is a typical Aspie girl in the way that she masks to cope with all sorts of challenging social and sensory environments, but this results in severe depression, shutdowns and meltdowns. Does anyone have any methods of tackling this, as well as the other issues mentioned?
Sorry for such a long rant! Any advice or second opinions would be so much appreciated.
Thanks,
Carly
Hi Carly. I'm finally being referred to adult autism services as a suspected high functioning autism. You daughter's experience is so so much like mine but I just didn't get any intervention at all. I basically shutdown for the whole of my school life and was regarded as being a bit backwards / non communicative / non participatory despite leaving my school with top grades. I was physically present but just not mentally there. My protective mechanism is music. I was very much into certain genres of music and would sit in the evenings basically playing my fave stuff over and over then taking into school and playing it in my head during the day. I'm not sure if your daughter has a fave thing but I'd say that's the best survival mechanism I had. I could just blot out the rest of my hideous time and stare out of the window. Things were better when I went to a further education college where there was a group of people who liked the same music from different courses that I could hang out with and discuss music. I was also fortunate that I had a chemistry teacher at A level who recognised my intelligence and being highly strung as they phrased it then. I went to Cambridge which I found very lonely but again my music got me through and connected with people who again shared my obsessive interest. I think therefore it's getting into whatever her obsessive interest is that provides some form of relief. It'll help but it wouldn't surprise me if she finds uni hard too. They other thing that I thought about is that I did a lot of cycling / running / dancing (by myself obvs) and I think that also helps de-stress and boost mood / switch off. I find it still helps take me down from feeling like I'm going for a Def Con 1 meltdown!
Hi, thanks so much for your reply! It's so interesting to hear about your experience, especially how you use music as an escapism. May I ask what you studied at uni - did you study something to do with music, or is it just an aside interest? My daughter's main interests are sciencey, yet for the past couple of years, she has been completely absorbed in creative writing. I think she uses it as an escape, the same way you use music - she says she lives in her imaginary world most of the time, and writes passages in her head when she is at school. At the moment, she is just sitting up in her room all the time writing and talking to her imaginary friends in her story. As much as I'm happy she enjoys it, I can't help thinking she needs to engage more with the real world... is it healthy?? It's even more of a concern as all her imaginings are focused on how she hopes her life to be in Oxford, which has become a complete obsession... I'm pleased she has regained hope that there is much to live for in the future, and at the very least, she is extremely excited by the prospect of being to hide in a library all day! Though of course, there is a high risk that her dreams will come crashing down in a couple of years, or even that it does not turn out to be as perfect as she imagines... any thoughts??
Best of luck for your journey to autism diagnosis, by the way!
I actually studied plant cellular sciences so something completely different. I found it hard as I was with a group of people who I had no connection with. Most of my friends during that time was actually townspeople who I met at gigs! I did find a close friend from the uni who would be described now as ESN with a unique personality! I guess something like that didn't phase me. I structured myself so that I treated it like a job where they could have my time between 9-5 but the rest of the time was mine to indulge in my main interest.