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.
Im not sure how much help ill be, but im an autistic woman who's also experienced fairly severe anxiety and depression. That was what led to me getting my own diagnosis last year. Im quite a bit older than your daughter, so lots may be different but maybe it would help to share what has helped me a bit?
Mainly for me its been realising that autism has been behind most of my mental health problems and that dealing with that will help a huge amount. Initially it was just such a relief that things 'werent my fault' but i guess your daughters beyond that stage if shes had the diagnosis a while?
I found mainstream mental health support ineffective at best and harmful at worst. Being told to change things you cant help isnt helpful! I found watching youtube vidoes by sarah hendrickx realky useful post-diagnosis. She talks specifically about autistic women and has a video about anxiety which she describes as being a perfectly rational (rather than irrational as suggested by most CBT strategies) response to living as an autistic in a neurotypical world that made a lot of sense to me. For me more mindfulness based and practical approaches have worked best. I worked for a month or two with a clinical psychologist who did understand ASD. The sort of things she suggested were using sensory calming strategies, eg for me a weighted blanket, being in water, certain smells, fiddle toys, certain music, ear defenders in noisy environments, (avoiding primark always at all costs!). This really helps.
Ive also found a counsellor that i speak to via skype through action for aspergers which has bedn hugely helpful as they really do understand and offer practical suggestions as well as counsel.
In terms of being independent i have also had to concede that i basically cannot manage a full time job plus daily living successfully. I now have a cleaner and use a meal delivery service. I am still independent, just not doing everything myself... or so i tell myself! And bluntly if i didnt pay all bills by direct debit they would not get paid. I used to specialise in red bills.
In terms of remember to do things it could be she simply needs a foolproof organisation system. I say simply... of course it isnt simple to work it out. I find if i dont have a routine at home things get forgotten (like keys, dentists... etc). I use outlook to schedule everything.. and when outlook says jump... you get the picture!
Probably the main thing she needs to know is there are ways round most things but it might take time to work them out. But that there is hope. Does she hav3 support at uni ('cos she ought to). Ive found it is hard to get taken seriously as a woman who masks well ( or can anyway!) which has meant ive had to search out my own support. PM me if you wan5 to chat, or if she does. Think youll have to friend request me first as thats how im set up
Oh yeah, and its not your 'fault' clearly. Ignore anyone that says it is. Its around 84% heritable according to estimates. Ie its in large part genetic!
I really do know that, but when the MHT think otherwise, it's so horrible! I have no idea how to work this forum yet - how do I send a friend request?
Just popping back to echo what Zomted has said here. I have been helped in similar ways and certainly, once I'd seen one Youtube video by Sarah Hendrickx I kept going back to watch the others. She also has a few books which I've found useful, including "Women and Girls with Autism Spectrum Disorder."
Does your daughter read much? Just asking because i've found reading in the area of mindfulness (incl. "The Mindful Way through Depression") and compassion-based approaches (See the work of Paul Gilbert, "The Compassionate Mind") quite helpful, although these are not specifically autism related.
Plus i also find some of the work and ideas of Asperger Experts help to shift my perspective towards positive action. Their courses are a bit pricey (and not very well written for that, I don't think!) and they're American (so I find there's a bit of a culture shift involved) but they have some free stuff on their website and Youtube which might help, if you haven't already come across it, that is.
By the way, your MHT sound most unprofessional and very insensitive. I often wonder whether the NHS are very clued up at all!
Thank you for that! We're in the North-West of England, it's a poor area and finding for all NHS things are a huge struggle. Sadly, I'm fighting for help with my elder daughter, as she has physically disabling conditions which are rare. Over the years, I've found it's scary to realise that although people might have qualifications, it doesn't mean they're blessed with common sense, and scientifically -minded people can find it impossible to think outside the box. I wonder if anyone else feels that medical staff don't really listen, they're doing what a lot of people do and just waiting to reply? My daughter loves to read, but the books I've given her, recommended, sent links to etc don't get read because it scares her to face her illness, I think. I can't even get her to listen to her relaxation CD. I don't know what stops her and neighter does she, but her doctors don't even seem to delve into that. I try to be positive, but sometimes when she's really horrible t me I get angry. Her sister and I talk about it a lot, trying ot find something else to help, and she wistfully said the other day how she'd hoped that they would have a close friendship when they grew up, but as my younger daughter drifted away, that seems to not be possible at the moment. I wonder if it's "just" Autism? She seems to absent herself from the room, often not remembering things that were talked about right in front of her. I don't know what she's like with her friends, though I do know she can be "giddy", to loud, too talkative etc (I feel that pain!) and needs someone to tell her to stop. Her friendships are very difficult, she was bullied at school, and she invests in people too much (also, same here), and can be far too trusting, or not realise that people might be finding her irritating (I do realise that nowadays). The book "The Now Habit" is brilliant, but she won't read it. I'd hoped that someeon from Uni might help her use the "unscheduling", but she just bats it away.
I sent a request, but have no idea how to access private messages - this is way more difficult to work than FB (other social media sites are available :D )
JennyButterfly, may I ask what do Asperger Experts do?
They have a Facebook group, various courses, a couple of books (although I'd say they're more like pamphlets to be honest), and a website at www.aspergerexperts.com.
When Asperger's was first mentioned with regard to my younger son this was the only support group I could find that provided resources for parents and families.
Far from perfect, often pricey, a bit gimmicky and a bit of a sales pitch from time to time BUT I do like their "sensory funnel", the notion of "defence mode" plus ideas on how to get out of it and their free webinars and other information.
I'd be really interested in others' views on them.
I am also struggling to work out how to access friend requests etc. Might be as I’m on phone. I’ll have a look on proper computer tomorrow!
I’m in north west too- coincidence!
I'm using my laptop, but don't know if this is set up for phone or what, it's a bit difficult to navigate, tbh. I'm North-Est of Carlisle, do you mind if I ask where you are?
Urgh, don't know if my reply disappeared or what! This is difficult to navigate. The defence mode was my daughter to a t, I'm flabbergasted! However, I've decided that we're all affected differently, as with most illnesses, my other daughter identifies as having more "typical" ASD, and my symptoms are wavering in-between
Ah, not that far north. Merseyside/Cheshire area
I think "defence mode" covers a lot of the experiences in my family, in one way or another. We're all different, of course, but there's a strong tendency towards fearful, anxious responses that have us cowering "at the back of our cave" with every setback in life. Looking back over my own life, I'd say fear lay at the core of my issues, beginning as far back as I can remember (it was there when I was in reception class age 4 and it's still with me now, aged 56).
Of course, AE are simply referring to our flight or fight responses, well known, basic, primal stuff, but in me (and in my sons) I think these have become exaggerated and really problematic.
So what I'm doing now (and have done for myself in the past before I realised this all came under the heading of "autism") is working on ways to either alleviate anxiety or prevent it from escalating in the first place.
Unfortunately things are still enormously difficult for us. I was only diagnosed at the end of last year and my older son earlier this year. My younger son has gone totally "hikikomori" and to my mind this gives us a picture of how extreme defence mode might look - feeling totally misunderstood, perhaps bullied, out of kilter with others and their expectations, anxious and generally bruised at got at by the world, there's a need to totally withdraw, minimise interactions and indulge in safe, predictable activities like online gaming. In previous generations without such games it might have looked like one of my uncles - a total hermit well away from the rest of the village and viewed by all as an eccentric.
I cannot say how much we can change things, but what we're trying to do is bolster feelings of safety, warmth, love and acceptance. I pay attention to small things around the home that might reduce sensory overload (things like lighting, furnishings, noise levels, having somewhere to escape to and enjoy solitude). And yes, the thought occurs that we have indeed created a hermitage. But this is our base to which we can then add other strategies to help us out there in the world.
We're looking at post diagnostic support for our older son, but this has to go at his pace, however slow (and to be honest the slower it is the more affordable it becomes). We've also found martial arts classes to be helpful, plus books around this subject too. Our older son also likes yoga, weights and walking - simple activities but ones which move him away from the hive of activity in his mind towards more of a sense of his body. Much of this is actually about strengthening the mind-body connection and from my own experience (which also included body scanning and breath work, for example) these do help to reduce the near constant anxiety to more manageable levels. With the anxiety levels down, I then feel more able to take on more, although I do now recognise the need to beware possible burnout situations.
Anyway, I am yattering. But I'm also curious about your daughter's autism team and whether they gave any pointers for post diagnostic support. It seems to me that, having struggled for years and only just being diagnosed last year, there might be a lot to make sense of. To me services actually seem quite negligent in not making any suggestions or signposting. Is your own assessment/diagnosis imminent? I'm thinking they should be pressed on these issues.
I've suffered from anxiety all my life, though I'm soooo much better nowadays, due to realising lots of stuff about psychology (though I had a very traumatic childhood which didn't help). It's made me realise such a lot about my anxiety, reading about Autism, and is quite comforting, really. I can tell my husband "You're overwhelming me, can we talk later" without feeling guilty. We've always been an "eccentric" family, but my younger daughter is just so scared and depressed, and is sort of frozen into immobility by fear, I think. She definitely disappears into her own nocturnal world of having online friends in America, gaming, being on Tumblr etc. She needs a "key" to just unlock a little bit of her brain to make her more calm. I keep reassuring myself that if I could get better, so can she, but the longer it goes on, the more despondent I become. The NHS is stretched to breaking point here (well, everywhere, but especially here), and the Autism service could only offer three hour long sessions after diagnosis, one of which was taken up with introducing us to a health and wellbeing coach who disappeared after four sessions saying that my daughter needed to go back to the MHT, who have offered group therapy on "mentalization" (CBT, basically) and won't offer anything else. If you're as bright as my daughter, you won't get fooled by people who obviously don't understand your condition and only know what they've attended a course on, so she just shuts down. The other session was helping her to write a profile to give people explaining her needs, which technically should be useful, but when she presents as so "normal", others literally DO NOT BELIEVE SHE HAS A PROBLEM!!! I don't blame them, but it's so frustrating when even the GP won't believe that she won't take her medications etc. The other session was a suggestion of a local group of people suffering Autism and their parent, which neither of us could attend due to my daughter's lectures, and goodness knows she doesn't need another excuse to dodge them, and the fact that I have my other physically disabled daughter to care for at that time. I spend way more time on my younger daughter's needs tbh. This is how bad out local MHT is - when they lost a psychiatrist due to lack of funding, lots of parents got letters telling them that their kid was so much better that they didn't need to see anyone any more (not Autistic, other mental health issues) The trouble is, my daughter totally knows that she needs to exercise, be diurnal, do Uni work, shower, brush her teeth - no-one is suggesting she gets a job as well, or does anything other than attend Uni and look after herself, but she can't seem to achieve it. She does things with bad consequences, but then gets terribly depressed that she's let herself and others down. She show little interest in us (her family), and does things which are really hurtful, yet can't stop herself doing them. We're "in reduced circumstance", so we can't afford private counsellors, and the NHS just can't/won't help. You weren't yammering, there are just so many pages of things we could al write!!!!!
We're all affected so differently, too! My older daughter - I think I'll start calling the elder one "A", and younger "B", not initials, order of arrival! A was born after three days of traumatic labour, and came out peaceful and calm, looked about, immediately rooted for a *** feed and achieved it in seconds, and has always been older than her years and calm and logical. B came out after a shorter, not traumatic in any way, labour, looking terrified, she was actually screwing her little face up into a frown when she arrived! Everything frightened her, being changed, being dressed, being fed! She went on to be shy, young for her years, hated conflict, and tried to tell everyone what to do once she could talk - it hasn't endeared her to people A walked determinedly at a year, staggering about falling over and getting herself back up again, talked early and could hold conversations at two, B was late walking (wouldn't let go of my finger!)!, late talking, never learned to ride bike etc. I just let them be themselves, as everyone is different and developes at their own pace, but I wish that Autism had been something I'd realised about sooner, so that B could have had help and perhaps would be coping a bit better now. I know we'll all always have ASD, but there are ways to cope, and reduce fear.