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Desperate for Help

WittsEnd
Hi, A new poster here.  I am hoping somebody can help to point us in the right direction as we can't seem to get any real help no matter who we turn to.
We are a family of 4, with 2 daughters aged 10 and 11.  My eldest daughter has always been challenging but since she started secondary school in September, things have become extreme.
She cannot cope with the stress of school, or relationships with other children, or not getting what she wants.  The school have been fantastic, trying everything to make it easy for her, giving her passes out of lessons, no homework, extra support etc, but for the last month, we have been unable to get her into school.
We have had several professionals talk to her, and all believe she is autistic, but she needs a formal diagnoses.
Most days my wife and I are subjected to the most horrendous verbal and physical abuse, she is regularly losing control and smashing everything she can find in the house, as well as punching, kicking, biting, scratching us both.  We both have several bruises and my wife has a really bad split lip where she was kicked in the face.  When my daughter does eventually calm down, she says she is sorry and wants to die as she doesn't want to feel like this.
Just talking about taking her to school would result in these violent outbursts and we can no longer even consider this.
We have been seeing a lady from TAMHS, and yesterday she had a meeting with all the joint services (paediatrician, CAMHS, social services, etc) to try and raise our case.  Unbelievably, they advised us that they will not accelerate our case and that we need to find our own solutions, we will be referred to the paediatrician in several months time (Advised waiting list of approx 9 months!).
I tried to get help from the national autistic society, who told me they couldn't help until we have a formal diagnoses, likewise barnardos cygnet course, parent advisor, parent to parent group support are all out of reach until we have a formal diagnoses.
We are not stupid people, we have read countless books of dealing with autistic children, and she fits the profile perfectly, but we need some further help outside of the books.
We are at our wits end, my other daughter is terrified of the daily violence, we are always having to get her out of the house and she is so fed up of being sent away to friends houses.  Rarely a day goes by without my wife and I breaking down into tears.  My wife has had to give up work and we live in fear of an 11 year old girl.  Even today, my wife took my daughter out to look at fish, she got into a rage because she couldn't buy the fish she wanted and on the way home, attacked my wife in the car, as well as destroyed the interior of the car.
We have had to call 999 on a couple of occasions, on one occasion, 3 of us were barricaded in our bedroom trying to protect ourselves whilst my autistic daughter was trying to smash the door in with a metal bar (loft hatch bar).
One day whilst being attacked, I rang social  services in tears desperate for help.  They could here my daughter punching me and the help I got was to be asked why my daughter wasn't in school and told that I have a legal responsibility to get her to school, the most uncaring response I could ever imagine.
We have tried everything to find her a way of coping, listened to her wishes, she has had her room decorated, new carpet and furniture, fish tank in it, built a den, everything we can think off but nothing works and she just wants something else.
We are no longer functioning as a family, with the daily fear, tears, loss of job, destruction of the house, all never ending, we are in survival mode with no joy left in our lives.
I am at the point that if someone told me a particular plane would go down, I would buy tickets for my daughter and myself, to end our misery and at least give my wife and other daughter a chance in life.
I don't know where to turn to try and get some help, we so desperately need the referral so we can at least try to explore other options.
We have tried the school, TAMHS, the GP, social services, and whilst most are sympathetic, they are unable to give any real support. 
We cant continue, we need medication, professional support or something to ease the pressure and misery.  I am so desperate, I would even consider putting my daughter into temporary care, but from what I understand, it would be me probably ending up in court for child abandonment. I don't know what to do, I am so scared that she will really hurt someone seriously and put them into hospital, she is very strong for an eleven year old and with the andrenaline, she can already hurt my wife and I.
Please can someone help, we don't know what to do and we can't continue to live like this, we are so desperate.
Many thanks

  • Hi WittsEnd

    So sorry to hear of your situation - it all sounds very familiar.

    One of the things we have found most useful is looking into PDA and we have found these approaches much more helpful for our son. So many of the usual 'good parenting' techniques have failed miserably with him and many strategies for ASD (he has a diagnosis for ASD) have not really helped either as the strategies for PDA are very different. Even good, basically sensible approaches like rewards and sanctions are incredibly unhelpful for children with PDA. We have had to forget everything we thought we knew about being good parents and begin again with understanding why our child is feeling and acting how he is - which is hard because it is not a straightforward thing.

    I would recommend looking on the NAS website - there is an excellent section on PDA - and then going to the PDA Society website. This has been incredibly helpful for us and we experienced a real 'lightbulb going on' moment. 

    I hope this is helpful - good luck with it all.

  • Hi WittsEnd

    These are the up to date versions of the three links that weren't working properly. They were slightly out of date so weren't directing people to the right place. I've double checked to make sure they go to the right part of the site now!

    www.autism.org.uk/.../children.aspx

    www.autism.org.uk/.../behaviour.aspx

    www.autism.org.uk/.../guidelines.aspx

    Hope this helps

    Best wishes,

    Ross - mod

  • Good to see you are now getting plenty of links to advice which may help your family and situation.

    Cheers

  • Thanks Nellie,

    The information was a very helpful reminder of the breadth of advice available on the web site.

    We have been re-reading the information you kindly provided.  There are a couple of links that we can't get to work and wonder if you area able to help.

    This link is not recognised...

    http://www.autism.org.uk/~/media/NAS/Documents/About-autism/Autism-library/Magazines-articles-and-reports/Reports/Other-reports/National%20Autism%20Plan%20for%20Children%20executive%20summary.ashx

    These next 2 links require a password, it looks like they are for employees only? But it sounds like the information would be very useful to use.

    http://www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-guidelines.aspx

    http://www.autism.org.uk/living-with-autism/understanding-behaviour.aspx

    Hopefully, you are able to point me to the correct links.

    Many thanks

  • Thank you Eve00675,  that is really useful advice.  I will read the link on propranolol, I was really hoping to avoid medication, but we are struggling so much, I will find out more about it.  Hopefully it will help her cope and therefore the ret of the family can feel better as well.

    She started secondary school with her friends, but they all ended up in different classes.  As she also struggles academically, she is in the nurture group to get additional help, but of course this does mean she is with other challenging pupils, all with their own issues and it does mean lots of social issues where she doesn't know how to cope with simple disagreements and different opinions.

    We are due to have a meeting at school in 2 weeks with TAMHS, I think they call it an ATTACK meeting, my wife would know the exact name, but as usual she is busy referring a disagreement in the other room between my 2 daughters !

    My eldest daughter has had an initial assessment with TAMHS, who advise she has a very high probability of ASD, but need the formal diagnoses by the hospital.  To be honest, everyone says she is ASD.  For a while we paid for a private cognitive behavioural therapist, but CAMHS have asked us to stop until they have finished with us.  She pointed us towards Pathological Demand Avoidance Syndrome, which seems to be very close to my daughter.

    Thanks for the tip on going private, I never thought of this.  I will start to look into this.  If it helps to open up some options, it may well be worth it.

    Thankyou so much for the advice.

  • Hi Eve00675,

    Thanks for your comment.  That is exactly how I feel.  When we started to realise my daughter was on the autistic spectrum back in November, that was exactly my position.  No rewards without better behaviour.  Everyone we spoke to told us that she needed a calm space, where she can feel relaxed and go to in order to calm down.  For the previous month or so, she had been asking for her bedroom to be done as she felt is was too babyish, and I had refused.  In the end, we put in a reward system where she had to earn points to get each of the items she wanted for her room.

    Our therapist advised us that if we cant get through a day without a meltdown, then make it half a day for a point and over the next 5 to 6 weeks, she earned the points to get those items.

    The thing that really annoys me is that it hasn't worked, she has refused to go into her room apart from when she is ready to sleep or totally relaxed (very rarely).  If she has any level of anxiety, she just wants to be in the same room as us and try to create a confrontation.

    My wife still feels that we need to find the one thing that will help her to cope, for example she now wants to have a small tent in the dining room where she can go to and it be her own space.  Honestly, I don't know what to do.  I tried to use the National Autistic Society helpline, but because she hasn't had the formal diagnoses, I was not allowed to speak to any of the specialist's.

    We did have a private cognitive behavioural therapist, for a few weeks, but before we were able to build a relationship and get my daughter to open up to her, we were told by TAMHS that we were not allowed to continue whilst we are under the 6 weeks of support offered by themselves.  But to be honest, despite how brilliantly supportive the TAMHS person has been to my wife and I, my daughter refuses to see her.

    I really want TAMHS to get us onto CAMHS or to the paediatrician so we can get her the professional help she needs, but the barriers are up and we are on our own.  Guess I will have to look at the private route.  It is so expensive though, much more expensive than what we spent on the room !  Really annoyed that after paying a huge amount of tax for the last 3 decades, we are now getting the brush off.

    I do agree with your last statement that we have to be cruel to be kind.  It works perfectly with my other daughter, but creates violence with my eldest.  My wife and I don't really know what to do for the best.

    Many thanks

  • New furniture, decorating her room, fish tank, new carpet and den - no more rewards for unacceptable behaviour.  She may work out that bad behavoiur gets her treats and that's not a good message and your younger daughter may get jealous.

    Instead offer incentives after good behaviour.

    And if you have any money to spend on such things consider finding a therapist instead who can help your daughter.   Look for a clinical psychologist.  That will benefit her more than a fish tank.  Cruel to be kind.

    All the best

  • I feel for you and your family and how you have been passed from one place to another with no help in sight.

    Go to your GP and ask about Propranaol for your daughter. Can help dampen anger. Info here patient.info/.../propranolol-from-devestating-anxiety-to-calm-in-1-day-40199

    and here www.birmingham.ac.uk/.../Propranolol.pdf

    Has your daughter gone to a school where she has no friends?  My daughter chose to go to another school from her friends but was desperately unhappy so that we changed her to her friends' school urgently for her healths sake.  Is your daughter being bullied?

    Have you taken any of the tests to start the diagnosis ball rolling - here is the one we did with our daughter.  psychcentral.com/.../autism.htm

    Go back to CAMHS with the results and if you haven't already, be absolutely be honest about how it is affecting all your family and you fear for the health of everyone including your youngest.  No family should have to suffer like this. 

    Have you thought about contacting your local TV station - you could be interviewed anonimously, back to camera, actor's voice to put your view across.

    Sadly waiting lists for mental health and assessments are very long in all parts of the country. 

    I recently got a diagnosis for my daughter, high functioning autism (asperger's) but had to go down the private route to get help quicker than staying on the NHS queue.

    Good luck

  • Thankyou for your kind words, I hope your appointment comes through soon.

    I don't know if it is the same across the country, but I am so dissapointed in Swindon NHS.  We have been waiting since November, only this week did we finally get acknowledgement that we are in the queue.  I can't believe that they have judged our case as non urgent and expect us to wait a further 9  months before they will even start to assess my daughter.

    In the mean time, I suppose we just have to accept that we are trapped in an abusive relationship, where we will regularly get physically attacked and my house destroyed.

    I dread to think what an urgent case would have to look like !

  • Just want you to know I feel your pain. We are also waiting for thr CDC to diagnose my son. 

    I hope help comes quickly 4u