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.
I don't feel blamed (well mostly not) but I do feel unsupported and mostly at odds with services who seem to provide one-size-fits-all options for individuals rather than tailored help for families or parents/carers.
I'm still searching myself so unfortunately haven't much to suggest. I'm basically doing the rounds with the NAS, a local autism charity, the carers association, a few FB groups and extensive reading (which somehow never quite hits the spot).
In spite of your "rocky relationship", from what you say it sounds as though your daughter still communicates with you so I'd probably start there. I appreciate you've probably already done a lot of listening and discussing, but I'd keep bringing it back to that, maybe more in the sense of active listening, if you haven't already done so, and allowing any thoughts or suggestions to bubble up from her rather than making any suggestions. She's presumably aware of the issues, hence the depression, but maybe has a different focus or take on these from those around her. The priorites observed from the outside (hygiene or ordering prescriptions promptly) possibly don't rank that highly on her list, especially if she's feeling very anxious and preoccupied and not in any state of mind to be sorting out practicalities.
I'm wondering what type of approach she would favour? She's presumably agreeable to therapy since you mention it, but is there a particular approach that appeals to her (and moves away from basic CBT-type brief interventions and erroneous Freudian assumptions)? Might something be available over Skype so there's no need to travel? Or does her university have anything to offer that might help (additional tutor time, accommodations, mentoring or counselling)?
I also wonder about her other interests and what strengths and aptitudes these might reveal. What is it about Dungeons and Dragons that appeals? Are there any related interests? What other relationships does she have? Might there be anything in these areas that can be built upon?
Other things I'm wondering about (but haven't fully explored myself yet) are somatic approaches, including such things as yoga, tai chi, chi kung, focusing or somatic experiencing which might be helpful with anxiety if these are options she might consider. I've found them helpful myself over the years (and was eventually diagnosed a few months ago).
Overall, though, I'd say it'd be good to find a professional who'd build up a thorough and shared formulation of the issues with your daughter and use this as a starting point. i'm finding this well nigh impossible with NHS services though.
I'm curious about Sarah Hendrickx Associates, if anyone has any info on or experience of what they have to offer.
No experience of Hendrickx associates as such but my diagnosis was done by her and she runs a post-diagnostic support group ive been to. She was fab. Definately well worth a look i would think. One of the few people ive met who i would absolutely trust in terms of ASD, particularly from a female perspective.
I don't think I can explain how little she does in the way of engaging with life. She likes DnD because it involves imagination and role play. She's good at Drama and is brilliant at writing (her current degree is Creative Writing) I have asked so much what she feels might help, and some of it is seeing a therapist who really questions her and tries to untangle her thoughts, which are very negative, but on the NHS we're basically, excuse me, stuffed. I am in what my late Mum referred to as "reduced circumstances", so we can't afford private work for her Other than that, her "lack of motivation", although it's much more than that, is all-consuming. There are people at Uni who are willing to try to help, but she just keeps cancelling the appointments. a health and wellbeing coach gave up on her after four sessions as she "wouldn't use the strategies I've given her". My daughter really wants to live a bit more of a "normal" life, and achieve her degree, but the day to day practicalities make it almost impossible., I've researched, but it's hard to say which symptom is caused by what. Thank you very much for your long reply, much appreciated!
Sounds like the ASD condition Pathological Demand Avoidance PDA.
And there is a help.
and help for you.
Ask council for a Careers assessment.
Thank you very much! You have no idea how bad things are in this area, not only is funding a major issue but so many of the professionals are stuck in a "one size fits all" for both diagnosis and treatment (for physical as well as mental health). If you dare to suggest otherwise, you're met with walls of stubbornness. They were very resistant to even sending her for assessment for Autism. There was one nurse who saw my daughter, no-one else, and only for the assessments and then three hour-long sessions, then that's it, you're out! My husband and I have had Carer's assessments, thank you, as I have physical illnesses including EDS, Crohn's and others, and my other daughter is very physically disabled. what would make my life easier would be my daughter actually getting help tailored for her, instead of the ineffective treatment so far. No-one from the medical profession has understood how badly affected she is, only those who have lived with her (including flat-mates!) She presents as "normal" when she interacts with them, and they never seem to believe either us or her when she describes her behaviour, it's really bizarre, actually. Thank you very much for the advice and links
I'VE JUST LOOKED AND IT'S MY DAUGHTER TO A T! How come the MHT don't blinking well recognise this kind of stuff? It's late, I'm shattered, I'm going before I start swearing when I think of the years we've been trying to get help! THANK YO SO MUCH!