Published on 12, July, 2020
Hi, this is my first post but I really need help. My daughter is 14 and we've always believed that she was on the spectrum but as she was high functioning and just a little 'quirky' we never realised any benefits to getting a diagnosis. The in June 2016 life started getting really tricky for her. It's a long story and it has been awful. She remains wonderful, gentle and kind a truly gorgeous person but she has suffered terrible problems since entering High School, bullying, loneliness, she was encouraged to kill herself by a 'friend' in messages. We've had police involvement, arguments with school, CAHMS and the education psychologist. They said I had a problem and needed anger management but people were still refusing to do anything because her grades were too high and she hides it so well in public but at home the anxiety was slowly killing her. My baby has now had a breakdown, she's not been in school since June, she can't dress or feed herself, she's completely crippled by anxiety and terrified by even her own sneeze. She's now medicated and not responding on a cocktail of Sertraline, Loraxepam and Resperidone. She has always suffered terrible separation anxiety when away from me and home sickness when we're away together. We've stuck to the same holiday destination for 8 years because she's comfortable there. We've always adapted to her and she's best when she's with me. There is now a lot of pressure to admit her to a specialist unit where they can be more experimental with drugs and offer intensive counselling (she's never responded to counselling in the past). I'm refusing to let her go, I'll do whatever it takes to look after her, I'll take her to day patient appointments, I'll nurse her I'll chop my arm off if it helps but they want her in for an initial 6-8 weeks assessment period when they'll then tell me how long they want to keep her. My gut tells me it would kill her and be the worse thing for her. How would she ever forgive me or me myself. My husband is starting to come round to their way of thinking. School is the issue and I'd happily home school but he doesn't agree. I need some honest advice, am I being unreasonable? Would the best thing to be to let her go? She's not responding to drugs so far. She barely speaks and simply answers 'don't know' to everything. CAHMS says she has strong autistic traits but they're not able to diagnose so they're just treating the anxiety.
Any advice?
Thank you
Hi Mummy Lion,
My heart goes out to you.
I have worked in the NHS for over 20 years and in that time I have only had to initiate ‘sectioning’ with 2 YPs before. On both occasions this came about because they were a direct danger to themselves. And this is exactly how I made that decision- it was based on whether, if they were not admitted as inpatients, would they survive, and the answer I came to was no.
So I think you may have to ask yourself this painful question too- if your daughter is not admitted as an inpatient, will she survive? Is she currently a direct risk to herself (such as suicide attempts, cutting, etc.?)
Secondly, you need the professionals around you to explain exactly what they imagine she would directly gain from being admitted that couldn’t be achieved via being an outpatient? Accessing counselling (and meds) do not really seem to be good enough reasons for admittance alone- as she can access these on a daily basis from home, so why exactly do they think she needs to be admitted? What will she gain from being admitted that she wouldn’t or can’t gain from staying at home and accessing outpatient services this way?
Thirdly, why is a diagnosis (of ASD) not CAMHS priority? If there is an underlying disorder which has aggravated her mental state, surely this needs to be fully identified in order for any current and future treatments to be effective (and not harming) for her? So I think that’s another question I would definitely be asking the ‘professionals;’ if your daughter had a diagnosis of ASD, knowing all that you (and they) do about ASD (such as often the need for routine, familiarity, different symptoms of depression, different causes of anxiety, different ways of conceptualising and perceiving self, life and others etc. than ‘NTs’) would they still be suggesting this exact same course of (inpatient) treatment for her?
Critically: will she be treated as an individual on the spectrum at the inpatient unit or will she be expected to perform and respond to a ‘bog standard’ treatment plan as if she was not ND but NT as she has no formal diagnosis? This important question needs answering I think? Formal diagnosis or not, if your daughter is on the spectrum, she can't be expected to receive treatment or respond to current or future treatments as if she is NT.
I think that, there are never any guarantees in this life, not one single one, not ever; with either opting to ‘heal at home’ or go for the admittance, both represent equally unknown outcomes. We can never ever know for certain whether we are doing the right thing, about anything, we can only ever do our very best at the time. And I think it is a cruel part of being human that we may always wonder about the path we didn’t take, or what may have happened had we have decided differently, no matter what we do.
We are all only human, sometimes we do make mistakes and sometimes we must live with regrets but, if your gut instinct is telling you that your daughter would not gain anything from being admitted or be in a worse state for being admitted, I have to honestly confess to you that I would personally go with my gut instincts. There is little in this life that can’t be changed again if we do discover that a decision we made was the wrong one after all.
My youngest ND son was on the verge of a breakdown (he had not yet reached the critical stage your daughter has but he was heading there) when he was 13 due to high school traumas and I did pull him out and have been home educating him ever since. Removing him from a highly toxic environment was the best decision I have ever made. It’s been a colossal amount of hard work- I didn’t opt for Home Ed in order to avoid lessons or exams or school work or life or anything- we didn’t flee into home ed- we actively chose this path as a positive solution, we decided to make a big life change in order to forge a better path than the road he was on, and I think, actively choosing (daring to make and follow) a different path in this way has made all the difference.
With your daughter, I think it will take a good year or two of extremely hard work, blind faith in yourself and in her, and the tiniest of gentle steps; I lived with my own great fear, anxiety, and uncertainty for the first two years of home ed, never really knowing if we had made the right decision or not, literally going by blind faith and hope alone, trying my best to trust deeply in myself and my son, daily. But, for me personally, my son is living proof that this (nurturing) approach can work.
The truth is that I needed to grow entirely new thoughts (a different paradigm) in order for it to work-I had to reassess everything I had previously thought about life, what it means, what a priority is and what it isn’t, what actually matters and what doesn’t. And take a huge risk. Everything in life is a huge risk really, no matter what you do or do not do.
It all depends on what risk you think is the one most worth taking?
Best of luck and a really big hug.
Thank you so much for your message. I don’t believe my daughter is a danger to herself, I think in the past there was a chance she could have been but I think that was more third parties planting ideas in her head. Even at that time, the crisis team told me the thing we had in our favour was our relationship with her. They asked what was stopping her from ending it all and she replied ‘my mum would be devastated’, so I can’t risk damaging our bond. I want to be the place she can run to, the safe place when everything is too loud, the one place she can always be herself and no explanation or apology necessary and I hope to be that for the rest of my life and until she feels she doesn’t need me anymore. Every expert we’ve spoken to so far has failed to keep promises and let her down. When with us she’d dance in the kitchen and giggle and act like a fabulous looney but at school she was completely mute, not even answering her name since the beginning of this year.
I’ve always believed her anxiety is a symptom of her basic needs not being met because people fail to acknowledge the fact that she has ASD. They keep insisting on asking her to identify her emotions, where I work on a comfort scale with her. She thinks hungry and thirsty are emotions because you use the word in the sentence. I felt so robbed in the holidays as I was just getting her back and then we saw a psychiatrist who asked her to recount the traumas of the last six weeks followed by the question ‘how do you feel about going back to school?’ I saw her crumble and deteriorate in front of me. CAHMS really don’t seem to get it and keep introducing for of CBT that she just doesn’t understand. One of her sessions lasted an hour and 40 mins and she fell asleep in it!
I think she’s worse on the meds’ and much harder to reach. I really will look at the home schooling.
Thank you so much x
I think that a very serious truth needs addressing here and I am wary of offering it. I know how hard, desperate and alone life can feel sometimes, and I know how much we may desperately look to the professionals for much needed help...and I know that there are some amazing professionals out there too...
However, in absolute honesty, I also sadly believe that some services (and some alleged 'professionals') are simply not fit for purpose. Accordingly, my instincts are telling me that any approach or 'treatment' which goes against your gut instincts needs to be questioned heavily, rigorously, and never followed blindly. Never.
And I personally wish that CBT (and god forsaken IAPT) would crawl back up Satan's 'armpit' (I am being very polite calling it an armpit) from whence they both came…
The most disgusting abuse of power of all is that when YPs complain that their CBT is not working they are accused of ‘not engaging…’ and when irate parents complain about their children’s poor treatment they are accused of needing ‘anger management.’
My little cub had become entirely mute in school too (he stopped eating, he stopped sleeping, and he was shutting down, slipping away, out of reach...) ...and this too was fundamentally because his ASD was not being acknowledged or understood.
The fact that YOU were ‘getting her back’ over the summer speaks absolute volumes to me.
The first year I pulled my cub out of school we slowly did absolutely everything and nothing...we baked, we painted, we went on bike rides, we planted veg, we built rockets, we built forts, we built just about everything you could imagine with clay and Lego and cardboard and wood...and we went to the beach, rain or shine, where he dug holes for hours and hours, just endless holes and holes and holes, never ending holes on an empty beach, which he would often then sit in and pull the sand back in over his body and stare out to sea.... he was grounding himself in the world again I think.
Working in the moment, with clay (or something similarly tactile) not analysing, not questioning, not trying to find answers, or thinking too far ahead (or behind) but just gently 'doing,' is extremely therapeutic, at any age.
These things (healing) takes time but taught me to never underestimate the therapeutic power of just 'being.' Not an 'object' upon which 'treatment' is 'done to...' but a person, being offered the freedom and support, to wholly be themselves and who they need to be.
xx
That is some post Spotty and you also have to thank your own lion self for getting where you are now and your wonderful artwork, and bass tones.
my mum walked out on me when I was 14 and has not spoken to me for the past three years! A period of time homeless and then I dug deep and fled to uni....
Sometimes you have no choice to forge your own Lion self.
there is so much love and support on here x
big love peeps!
big love Spotty. Xxxx
It is so sad to read this thread but also somehow uplifting because of the support and wisdom being shared so generously. You've made me cry and fly with optimism at the same time.
I've been looking back at my early teenage self and realising that I was very close to being in the position your children have found themselves, but I wasn't close to my Mother, no one ever saw the mask slip, that would have been completely unacceptable to me then. I just spent a lot of time in my room crying without really knowing what I was so sad about, but no one ever knew or was really interested.
I made it to my early twenties before being given the 'depressed' label and a variety of SSRI's, all of which made me worse up to and including suicidal. CBT was the last therapy I engaged with and that was 17 odd years ago and ultimately made me feel more of a failure so I walked away from the 'help' on offer and have been mostly hidden in my studio at the end of the garden ever since. Of course all this was without any awareness on my or anyone else's part of ASD.
I guess what I'm trying to say is that your special children are so lucky to have you lion mothers and have such a close bond, trust and understanding of what you are dealing with. I felt completely and utterly alone at that age and can't help but wonder if that could have been different if we'd known I was autistic, pointless to contemplate I know.
I realise that this doesn't make your lives easy but you have something very powerful. Wishing everyone some joy and progress. xx
Couldn't have said it better myself AngelDust xx