Desperate For Help

I have an undiagnosed autistic 19-year-old daughter.  We have long suspected that she is autistic.  She doesn't like plans to go awry, likes sticking to a routine, and has had teenage type tantrums since the age of approximately 6.  She has mild learning difficulties and developmental delay that was disagnosed when she was 3.  We are waiting for an autism assessment, which is currently suspended due to coronovirus.  Unfortunately, this doesn't help my daughter.

She has had problems with depression since around the age of 14.  She was bullied in high school, which is and continues to make her depression worse.  At the age of 16, her depressive symptoms seemed to slow.  Two years ago, she broke her leg, tripping in the street.  She spent 3 weeks in hospital and needed an operation to straighten said leg after a month.  Her depressive syptoms have slowly made a re-occurance, becoming worse a year ago, leading to suicidial ideation.  She has complained of voices, telling her to harm herself since.  They have got worse over the past few months.  We have spent a few nights in our A&E, leading to 2 community mental health team appointments.  One, where she was told that she might be autistic, and the other where she had a test of some kind, and referred to autism services.  This would, we were told, take a year to a year and a half.  After half a years wait, she received a letter informing her that this was suspended due to Coronavirus, about half a year in to our year to year and a half wait.

Her voices seem to have turned into visual hallucinations of a room full of people.  The bigger, the room, the more people she sees.  They are not known to her and they are all shouting horrible things, which I will not repeat, save for them all telling her that she must harm herself.  We intend to telephone our GP first thing tomorrow.  If, as most appointments have been over the past year, and barring a phsyical cause of the hallucinations, we are turned away with a "Yes, autistic", type of comment, I do not know what to do next.  Her likely autism has been dismissed as such with most mental health services in our area.  We cannot get any further help.  Ringing of suicide helplines, gets her told to go to A&E, some of whom will call an ambulance or police, some of whom will not.

From various conversations with her, the auditory and visual hallucinations make her overly anxious, which makes said hallucinations worse.  I am the only person available on hand to help, or whom she will accept help from.  She is not comfortable with many people and finds it difficult to express her thoughts and feelings, making counselling difficult to impossible, if it were on offer, which it is not.  How can I help her to ignore all her voices and people telling her to harm herself and help her control her anxiety about them?  I have tried to teach her mindfulness, that she is not extremely receptive to.

Any suggestions greatly received.

  • Hello! I know that it has been a while since you posted this, but I would look into psychosis. Is your daughter alright? I wish the two of you the best of luck. 

  • your daughter is suffering from quite serious pychosis. She needs to see mental health about the harmful voices in her head, they are more serious than the autism. I am an amateur so giving advice here is dodgy.  What I am saying is mention the hallucinations/voices first ( in A&E ) to try to get an appointment with a pychologists of some sort.  The autism diagnosis is secondary but also important.   To me she is pretty seriously ill. 

    you need to talk to A&E  as soon as possible.

    https://www.mind.org.uk/information-support/guides-to-support-and-services/crisis-services/getting-help-in-a-crisis/

    one thing u could suggest to her is to open an account in 7cups.com.  There she can IM with people( skilled listeners ) about her issues. But I do feel she is way too serious for this, but I have talked to people like her in 7cups.com because they wouldnt talk to counsellors at all. I mean they preferred other informal anonymous people to talk to.This would be at best a stalling path until she meets a pychologist/therapist that she likes/talks too.

  • Does she have any idea about her future?      What was her plan for the future/job etc?    Is the worry about her own future and all the pressure and expectations that go along with that paralysing her ability to think of a viable future?        Most kids don't seem to have any idea about their own future - the plan just seems to be school & university - and then it's all a bit vague from a guidance point of view.    And it's all too much information to grasp properly.

    Is she so worried and dreading her own future that opting out is the only thing on her mind?

  • :)

    I wish a private diagnosis were possilbe.  It's not.

    She's not in education.  She was withdrawn from school at 15, and home educated for a year before attending college for 2 years, that was meant to be 3.  Formally withdrawn about 3 weeks before the lockdown hit, but hadn't really attended much beforehand.  It continues to be a problem because her head took over when the bullying ended.

  • Do you think a private diagnosis might help?      My company health insurance paid for mine - and would have paid for any of my family's.    I understand it can be between £1k & 2k if you're paying yourself but it's instant - you just find the best person near you (google is your friend for that), get your GP to refer and mine was done and dusted in 2 weeks.   

    Whilst I cannot speak for your daughter, from a personal point of view, I found my dark ideation was caused by a lack of clear viable alternatives - life was too complex and even though I'd calculated every possible outcome, none were acceptable.    It became a very logical & rational choice.     It took some major changes in my life to create options that were not dead-ends.    

    If school is a big problem, would she do better at at a different school?