My daughter is 24 and was diagnosed with ASD late last year. She's always suffered from severe anxiety, which led to depression, and has been trying to get help since she was 17. I'm waiting to get an Autism assessment myself, although I'm nearly 100% sure I'm in there somewhere! We both have EDS, and the link has been made between the two illnesses recently. She has been a nightmare to cope with since she was about nine, but got significantly worse at puberty. The local mental health team have been appallingly bad, they ignored us suggesting she was in the spectrum for year. Now all they'll offer is group therapy based on "mentalization", which looks to me like the basic CBT she's had suggested many times before.
She has typical depression symptoms of not getting up, missing school/Uni; not washing or brushing her teeth; not engaging with life at all; being nocturnal etc. She was suicidal in her teens, but we seemed to manage to help her with that. Family therapy's advice was "do nothing"!!!!!!
I suggested a move to a local Uni, as she got much worse A levels that her intelligence would suggest, although she only attended school about 50% of the time, so did well to get her three Cs. I wondered if the thought of being many miles away was part of why she felt she couldn't apply for courses. After a couple of years of being at home getting worse and worse, her GP changed her anti-depressant which helped, while the MHT didn't prescribe anything. When the dose was increased, she eventually became well enough to attend the local Uni and move out into Halls.
She failed her first year, as she couldn't bring herself to do her work, sometimes couldn't hand it in, for some reason. She's changed courses and prefers the one she's on.
It became clear that the psychiatrist (Freudian) was blaming ME for her symptoms! I've done research and seen that this used to be the case years ago - separation problems etc - but honestly it's so frustrating! It's my genes that she has, but all the mental health professionals seem to think it's my fault she is as she is. I have another daughter who is physically disabled, probably also in the spectrum, but who has no anxiety at all, and they have the same Mum. I am quite confident-sounding, and obviously fairly opinionated, but I really have tried to tone it down when I had dealings with the MHT, but when they're just not helping at all, the frustration is so severe.
I shouldn't bang on so much, but it's as though the symptoms continually surprise them, and the fact that they've "followed" her to Uni, too. She's in a shared house and I know her symptoms bother her house mates and people on her course. She comes across as "normal" in conversation, but then how she acts afterwards is clearly detrimental to her health. I'm sick of medical professionals telling her she should exercise, eat healthily, drink plenty of water, get out of bed during the day and do her work, etc as though telling her just not to have her symptoms! They don't look behind WHY she can't manage to do these things. It isn't that she doesn't want to, the poor woman! It's putting the cart before the horse, help her with her problems, find a way to help, and then her symptoms will subside.,
Over the years, I've nagged, been angry, been as kind as a kind thing, done nothing... all to no avail. Now I try to occasionally help from afar, but the medics don't understand that she doesn't open letters, doesn't make phone calls, doesn't make appointments, etc. If I leave it up to her, nothing "official" gets done at all. I even have to keep on checking she's taking her medication & have lost count of the times she's finally admitted that she's run out, and had to coerce her GPs practice into immediately providing a prescription. They have her letter of diagnosis, but can't get past her presenting as "normal" so don't make allowances or understand what her behaviour is like, they expect her to take her pills etc.
I don't want to micromanage her, I want her to become independent, but whenever I leave things alone, she just seems to do things she's completely obsessed with Dungeons and Dragons, but no washing, Uni work, teeth brushing etc. My husband and I, and her big sister, wonder if she'll ever be able to live an independent life, which is really worrying.
She says thing she shouldn't (me too! but I realise afterwards and try to make a mental note), is too "huggy" and tactile with people, but won't listen to us explaining why she shouldn't be like that. She feels things so strongly (me too), but insists on acting upon the feeling instead of reflecting and realising she shouldn't.
We have ended up having a rocky relationship, as everything has to be her way, and she shows little interest in our lives, despite all of us loving her and being interested in hers, although we try not to intrude.
How can I help her? How can I make others understand the depth of her problems?. There is no-one local who does psychotherapy/counselling for Autistic people, and I can't drive her miles and miles, as I'm not physically well myself & have her sister to care for.
If anyone has nay suggestins, I'd be very grateful.
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