What a waste!

My son is coming up to 28 years of age and has been suffering mental health difficulties all of his life since a very young child. He has been on just about every type of anti-depressant available, but he never gets any better. He has no friends, no social skills, crippling anxiety and is in his room just about 24/7. Through his life I have tried and tried to get help but each time it has lasted only a while before we were left to' get on with it'. Thus, with no firm diagnosis of anything other than Dispraxia and depression, he has been left with no help. Over the years he has been terribly violent and destructive, with walls bashed in and doors smashed all the way through and he treats me appallingly, yet I know he loves me. He says that if anything were to happen to me he would kill himself immediately as that would be the end as far as he was concerned and he would be truly alone. After a call to the mental health crisis team at a particularly bad time he was referred to secondary mental health services and is currently having psychotherapy with a trainee and he had a very short mental health assessment with a trainee GP who diagnosed Dysthymia. He did have a support worker for a few weeks who managed to get him to meet him at a local coffee shop and they built up a friendship in my sons eyes, and then without warning he said his visits were ending. My son seemed OK at first but we have just had the week from hell with him as his depression went into overdrive. We are now awaiting a second assessment with a fully qualified person but it seems we will be waiting a while for this as the person who would have done it last Friday has left. At my carers assessment the assessor asked if my son had ever been tested for Autism and when I began to read about it, it was a 'light bulb moment' for me when things just started to slip into place. He did the Cambridge online autism test and scored 32 putting him in the top bracket for possible autism. Mental health services are (I believe) a little annoyed that I have requested that my son has a formal assessment to see whether his is indeed on the spectrum and I know I am going to face a monumental struggle to see this happen - if it ever does. I suffer depression myself, as do several members of my family and my aunt committed suicide so there is clearly a strong family history of mental health issues. My problem is getting anyone to listen to me when I say that my son may be afflicted with both mental health issues and autism. We would at least like to know if this is indeed the case or whether it could be ruled out, but I just cannot see them taking me seriously, even though my son has told those who see him that he has always felt different to everyone else. It all just seems such a waste of a young mans life.

19 Replies

oldestnewest
  • I am so sorry that you have had to go through all this. My only advice is to keep fighting for an assessment. There will be people who say that it isn't relevant or it won't help but it will! Just knowing what is wrong makes a big difference. Yes there isn't much support for those with autism on the NHS, but there is support out there. The National Autistic Society (NAS) is a great place to start. There is a load of books and information on the web for how to help someone who has autism. There are courses and seminars to help train you as the carer in dealing with the behaviours. And I think it would help your son to understand himself and maybe accept himself a bit more. I know it is difficult, but I hope you manage to find support.

  • Thank you for your kind words - it is a great to know there are others out there who understand. It could of course turn out that he does not have Autism, but it is better to know that than to just wonder. As you rightly say, it is important to know for both my sons and my own benefit. If he can at least have a reason as to why the world is such an unwelcoming place for him, then at least he might be able to accept that it is not something he can change by just taking a tablet and I as his parent can learn how better to support him. It breaks my heart to see my son trapped in what he describes as a prison and I intend to fight for an assessment.

  • I know how you feel. My 11 year old son has just been diagnosed with autism after fighting for 3 years. I think it has helped my son to accept that certain things are harder for him. We try to point out the positives such as his good maths and science skills. We try our best for him but sometimes it is hard. What is harder is that my husband is a likely undiagnosed autistic. He is 44 and life is very hard for him. As his wife, I feel like I have three children instead of two. At the moment, there is little support for adults needing assessment. They figure he is an adult, has a job and a family, but he is chronically depressed and our marriage is strained. But we must do what we can. Hopefully my son has better support than his father did. x

  • I hope you find the support you and your son deserve :)

  • Truly sorry to hear of you and your son's situation. I'm in Ireland, but like the UK Govt. assistance is terribly under-resourced and you have the to beg, scream and shout for any little bit of help, but do, never stop! You'll find though the best help will be in your own community if you reach out to small groups, look up local charities or just meetings of any social sort. You'll see that there are people similar not too far away that would welcome you and trade experiences, talking helps. Check notice boards, put up your own notices. There are friends near for both of you. Good luck and don't give up.

  • Thank you for the reply and the advice. You are so right that it does seem that you have to make an absolute nuisance of yourself to get anywhere. It is so sad to see our N.H.S. straining at the seams and beginning to unravel at the very time in my son's case that he desperately needs it. The latest I have been told is 'there are processes we must follow' --- long ones I expect! I have joined the local carers group which I have found comforting, but my son is not yet at the point that he could cope or indeed want to get involved with anything, but maybe one day. If I won 20 million pounds on the lottery tonight I would gladly spend every penny of it to get him the treatment he needs right now. Unfortunately, its just a dream, but I hope that these types of unseen illnesses will one day be treated in the same way as physical ones are.

  • Don't give up, there's some selfless person out there that will help you, get to know your son and help him too. They might be even reading this post now. Stay strong.

  • Well as they say - you never know ! :)

    Thank you x

  • When I read what you had written about your son, you could have been talking about my son, word for word, everything, even to saying he will kill himself when we die. Like you and your son we struggled like this for years and he wasn`t diagnosed until his late 20`s, unfortunately we were told by the Consultant specialising in autism this sometimes limits what you can do, in the way a younger person accepts the diagnosis and adapts to change and help better. We also had the dyspraxia diagnosis when he was very young and this came about because I kept asking `why`. I think many years ago a diagnosis of autism wasn`t given, but I also think it was to stop me from asking `why`. Never, ever let anyone stop you from telling it how it is, ask everyone you can and shout for help because believe me you have to shout to be heard. There is help out there but unfortunately again it has to be fought hard for and you need to be persistent. I can tell how it`s affecting you as well, it did us as a family, it`s like living in a nightmare, you cannot tell a person who hasn`t had this experience what it`s like. My son was diagnosed as having aspergers/high functioning autism. It`s difficult to get a diagnosis and get assessed by the right people. If I had known more back then I think I would have paid for a private diagnosis, as I know there`s often a wait. Because it`s this diagnosis which starts you down the path to getting the right help you and your son need, this is the key. Every County Council has what they call a Autism lead, this a fairly new thing and came about I believe from the Autism bill a few years back. You could try ringing your local County Council too and see what help and support they offer and ask them to point you in the right direction. I believe your son has autism and an official diagnosis will stop this `being in limbo` state you are in now, it`ll help you both to come to terms with it, and be able to move forward with the correct support, this is essential. I know the pain you both are feeling, it seems never-ending and all consuming and you both need help. Please be persistent, really persistent, never feel like you`re being a nuisance, and please let us know how you`re getting on.

  • Thank you so much for that ----- I do feel absolutely worn out and desperate with all of this. We received a call on the home phone yesterday late afternoon to speak to my son - all the caller would say was 'its the NHS'. It turns out that it was the support worker who is now going to see my son this coming Friday after saying he would not be seeing him again. I suspect this is because I have been bombarding the poor man with texts and have clearly got on his nerves as he would normally have just texted me. It makes me feel that I overstepped the mark and is a taster of things to come. Tonight, because I am too tired to watch a film with my son he says 'That's OK, but remember I might be dead soon' (apparently he has dreamed it and says when he does, he is going to tidy his room and put his best clothes on). I've tried to make light of it as he has said similar things many times, but it again got me thinking - What if? I just feel totally at my wits end - so sick of this never ending battle. I have a daughter who has just gone into remission from cancer who is 26 and I have a son who wishes he were never born and I wonder where it is all going to end. Its just so hard and I understand that to those who are dealing with us, we are just part of their daily case load and they are stretched to the limit, but to the people who are the 'cases' and their families they are the only hope we have. I will keep you up to date.

  • Don`t worry about `the poor man` it`s a job, he gets paid and gets to go home at the end of the day, you are living with this problem every single day. He is one of the links for the help you want, unfortunately he`s not really helping you and you`re feeling guilty, so please stop.

    He is coming back...because of your persistence, you`re desperate for help, it`s his job to help you. You go on to say `I suspect this is because I have been bombarding the poor man with texts and have clearly got on his nerves as he would normally have just texted me.` well good, see it as a step forward.

    May I suggest you write everything down and date it i.e. How your son has been over the years, how he is now, what he says, what he does, what effect this is having on him and your family, everything even how you can`t get the appropriate help and so on. The more information you can give them in writing means it`s harder for them to overlook you because they have all the facts to hand. Keep a copy and give copies to anyone who could help, you might find you will need them in the future as well, you will be asked many times and there`s always something we forget to tell at the time.

    You`ve also had the worry of your daughter, it`s good to hear she`s in remission, but you have to keep going. Don`t waste any time trying to understand or make excuses for the people who are dealing with you and your son....really don`t. I see some of me in you to that respect but you have to change your way of thinking, it`s a complete waste of your time and energy.

    My son has said very similar things and although no-one can be sure that they`re just being said because they`re trying to make you understand their desperation so they have to be taken seriously, this is something else you need to write down.

    Just please don`t get bogged down in other people`s feelings, it may sound selfish but you have to be. This will not come easy to you I can by the way you write what a good kind person you are. But you won`t get anywhere unless you begin to be like a dripping tap and insist you need help, now, not next week or the week after, tell them you and your son cannot cope and say it with meaning. Don`t let them ignore you. I have been there, for far too long and have learnt my lesson the hard way, if they can fob you off and go away saying they`ll be in touch or back next week they will and do nothing they will, this can go on for years.

    You cannot be of help to your son if you are run down yourself, you`ll make yourself ill, that`s why I`m going on about the importance of letting them know how desperate the situation is. If you want anything ask straight out, say you want a referral for your son to have an assessment for autism now. Go and have a word with your own GP too and give him/her a copy of what you have written, tell them you cannot cope any longer and go back, keep going back. It`s awful that we have to do this, but I`m afraid as I say I found out the hard way, when I hit rock bottom and I think you`re in that place right now....just remember the only way is up.

  • Again , thank you. One thing I have done is kept every single piece of paperwork over the years regarding medical , school and social service involvement with my son. All of this has been passed to the secondary mental health team, as indeed have many many letters, screen shots of texts and photographs to prove I am not just an over anxious mother. They have absolutely everything in writing and I have also written to my sons GP requesting an autism assessment as appointments are as rare as hens teeth these days. No reply as yet though. I also requested a meeting with my sons care coordinator and passed more letters to him with updates on my sons current frame of mind and also an article entitled 'Where autism and mental health issues collide' I found on the net highlighting the exact similarities. I then found descriptors of high functioning autism and was able to provide examples in my son's behaviours which related to all bar one or two of them. The care coordinator does not seem that clued up, he wrote about three lines and numbered my 'evidence' in a very haphazard way, talked about the difficulties of having a dual diagnosis and how it might not be good for my son in regards to which agency he would be with. Then he said he had to be in Tunbridge Wells so had to end the meeting after about ten minutes. No communication since and that was around two weeks ago. So most of what you suggest I am doing, but I do get your overall point and I will have to toughen up a bit. May I ask if your sons diagnosis has brought about changes in his and your lives and if so , what they are ?

  • Yes, keep going and it helps to say how much it`s all affecting you, how you can`t cope etc. I don`t think sometimes they read the notes, I`m fed up of them telling me how hard worked they are!

    I`d like to say my son`s diagnosis has brought about changes in his and our lives, I suppose it has in some ways, because he was in and out of a psychiatric ward for approx. 2 years with the challenging/destructive behaviour it meant when he came home he had to go back to the hospital. They couldn`t help, it was here a specialist in autism who came to the hospital and diagnosed him. With this you do get more specialist help. BUT the problem is there isn`t enough help out there. In the end he was put in a specialist autistic unit 120 miles away. Then after a few years he was moved to one nearer about 50 mins drive away. But it was primarily for learning disabilities, which he doesn`t have. I did object at the time as, I found out in the NHS Consultants in LD don`t treat people without LD. But the funny thing is this unit was so much better for him, access to the community, shops etc. the staff are second to none. Now with Winterbourne and the new Care Act he has to move. This is causing so many problems, it`s rolled as being better, saying people can choose their own care plan and they are closing the hospital units (my son was in one). I saw n TV how people with disabilities and their families were saying how great it is, but what happens when they do assessments every 6 months and take away the support as they`re deemed not to need it. Because of his challenging behaviour my son`s has limited interests, he won`t use public transport...the list goes on, and where he is now he can access everything to meet his needs. We/they are having trouble finding the right placement. This has a knock-on effect as the unit is now unsettled, full of patients with more challenging behaviour which upsets him, he`s frightened worried for his future as we are. Every meeting I attend I worry because I don`t want them to take the decision to place him in anywhere unsuitable . I say `I` as I still live with his dad but his response to our son over the years was to go out most nights. I didn`t, still don`t have the support I badly need. I am the one sorting out our son`s life, always have been and I know things will not change. Your life goes on hold because you want to do the best for your son. My GP said one day, it will always be like this....I know, I think she was telling me I have to find a compromise. When I think I`ve got my son settled, the rug is pulled from under my feet and I`m in limbo. I spend a lot of time looking for the right placement, there just aren`t enough of them to go round. I question the mentality of the people who brought in the Care Act, I think it`s mostly do with saving money.

    I wish I could say when my son got the diagnosis everything was fine. I can`t really although the diagnosis does carry a little more weight, so just keep fighting. I know it`ll take all your strength, but if you don`t they`ll forget about you, they`ll assume because they don`t hear from you you`re coping. Tell them you`re not, if you have to ring every day to tell them you`re not, do so, make it so they can`t ignore you. It`s a terrible thing to have to do but it`s a necessity. Please let us all know how you`re getting on.

  • Thank you for your reply - having a particularly bad day today. Just myself really, worrying about everything especially as my other half said 'there are three of us in this marriage'. He's not my sons natural father and probably wonders how he ever got caught up in this nightmare. It's nice to know though that I'm not the only one going through this - I often feel so alone. I will keep fighting as I know I have to, but today I just feel like crying . I will keep everyone updated and let you know how the assessment with the consultant goes on 31st March x

  • Sounds as if you have really been left on the back burner for some time now. I know how hard it can be when you are left trying to struggle to deal with somebody, displaying bizarre /irrational behaviours - putting yourself at risk of harm/ but we take that risk, out of love and desperation for our loved ones (adult Children) which is often taken advantage of by the 'System: [MentalHealth& socialServices] when we desperately reach out for 'professional help' Now that you are arranging for ADRi Diagnostic Assessment - it will either serve to give your son a 'diagnosis' (label) or eliminate an ASD Diagnosis. Either way, it is a step in the right direction.

    Please do be mindful of their being other Mental Health Conditions, which share a lot of the symptoms which present in ASD; which might be considered; for further assessment, should he not fully meet the 'diagnostic criteria' for ASD. E.g.: Schizophrenia?

    Also, not wishing to 'dampen your spirits' as I know how welcoming a 'potential diagnosis' for a loved ones behaviour/mental state can be - as we consider it to be a direct route to specific help/support and treatment - but this is not necessarily the case. Even having a diagnosis/specific MH condition, can leave you just as frustrated in trying to find support.

    The other point to bear in mind is, ADi assessments, do not have a fast track route to a confirmed diagnosis. It is a carefully considered process, of assessment and involves a lot of 'discussion /researching individual's life history, events, medical, education, friendships - as far back as your child's birth, development, progress - milestones etc. The other part of the test/assessment relies on specific tasks and activities, the person has to perform, also they are presented with various scenarios; to assess how they interact etc and other pre-determined criteria. So it is a bit of a timely process to work through and complete. But you will be involved every step of the way, as your input is vital to determining much of the required detail and info.

    Once the process starts, it's not so bad as you are involved straight away. Just hope you not having to wait too long for it to begin?

    Just something to consider, have you tried filming some o your son's irrational behaviours /depressive episodes /violent outbursts discretely. This

    Really would help you in relaying the situation to any professionals you want to explain your concerns to, as really bring it home and they cannot consider you to be 'exaggerating' in any way?

    The othe thing to consider, might be to write to Adult Social Services, requesting your son be assessed for health & Social Care Needs, which they have a duty to carry out within 10 days of referral.

    It might be helpful to talk to a few support groups /charities for advice/support like Mind, Mencap, Rethink Mental Illness, NAS.

    May I wish you luck in finding diagnosis and support for your son, it's so hard fighting someone's corner - whilst feeling totally drained & burned out, it can be really stressful. Please don't give up and always find someone to support you - even a bit o emotional support can help.

    All the best

    Nadia

    - a Mum of 19 yo with ASD/ADHD and Schizoeffective Disorder (currently detained in hospital, under S 3 of the Mental Health Act 1983 (I fought the system too, for about 4 years - desperate for my son to receive support/

    Which fell on deaf ears. I was deemed 'overprotective mother!'

    unfortunately things got a lot worse and he had to be sectioned!

    The right help & support and I believe would have been a totally different outcome??!

  • Hi Nadia - thank you for your reply - its comforting to know that there are others who can take the time to offer support when you once thought that you were all alone. I have considered other mental health conditions which might apply to my son, the closest to which he seems display the most accurate symptoms seems to be Avoidant Personality Disorder. But I am no doctor and of course this is only deemed from my own research. As the latest appointment for full mental health assessment has yet again been changed to April 13th, I am wondering if it will ever get done as its been cancelled so many times. As far as the diagnostic assessment for ASD is concerned, I do not think that the NHS will fund this, as they seem to think it will complicate things with too many agencies being involved and as you rightly point out, they probably do see me as an overprotective mother. I looked into having the diagnosis privately, but the cost of 2 - 3 thousand pounds is more than I can afford. Again, as you mention, although a definitive diagnosis may provide a name to the problem, I realise that is a long way from being the magic cure that so many of us wish for. I would not be able to covertly film his behaviours as he would know immediately and this could put me in some danger, but I do have some photographs of damage which have not been necessary to use since my son has now got to the stage that he has freely admitted that these things have happened when he had psychotherapy. I know from reading your story below your reply that you have probably had far more to contend with than I have, as my son has never been admitted to hospital over this. I do not feel that he exhibits any signs of Schizophrenia, which in itself is a blessing. The carers coordinator who did my carers assessment and is an ex psychiatric nurse said that that from my description of past episodes, it is amazing that he never ended up on an acute ward. This is perhaps due to my having this far been able to talk him down when things have been really bad and tell him we will put it behind us and move forward. In fairness to my son, the last truly terrible episode was when he was trying to hold down a job as he was just incapable of coping with the stress and it used to cause him to become really out of control. But while we wait in hope for something to change for him, I watch my 27 year old good looking son sitting on his own in his room staring at a computer screen whilst the best years of his life tick by and he is stuck in limbo. Not able to move forward and live any quality of life and too afraid to get out and face the world. At the same time, my husband and I who had hoped to have a little privacy and time for ourselves as we grow older see this as an impossible dream. It is all a very sad state of affairs that in this day and age mental illness is so difficult to get adequately treated. After all, we would not stand by and watch a person drag their broken leg behind them down the street without offering to help, yet those with a broken mind can only hope that one day someone will notice them and they will get lucky. x

  • I really wish I could offer something a bit more comforting, than a brief low down on my own situation, facing endless struggles and challenging the authorities - to try and get my son the support he so desperately needed, just to be treated as an overprotective mother, who won't let go and allow my son to 'make his own mistakes' (which, had I done - he probably wouldn't be here at all now!).

    But what I will say is this, don't ever give up - if you can get some legal support (law centre, Pro Bono public funding Solicitor etc) please do so - as Local Authorities /Mental Health Teams etc; will start to take you seriously once threatened with legal action! (sad but true!). You might want to consider making a formal complaint to LA - this can be effective, esp once at Stages 2 and 3 of complaints Procedure - A's incurs 'independent Person' to investigate - it's all worth trying. Also try and familiarise yourself with as much Statutory GuidanceLegislation etc. As LAs will try to undermine you, make you feel you not entitled to rights etc

    I can recommend two particularly good websites for you to look at/consider; one is NICE - their guidance is very useful/informative and statutory (enforceable in law). The other is called 'Schewer on Care' this has heaps of info, faqs and links to many other organisations. It deals specifically with The Care Act 2015 - set up by Belinda Schewer/ you can post questions for basic response/info and also can get more in depth information /advice via a paid service.

    I really hope this might help and I would be very interested to learn of any success you encounter along the way ! (.....and you will!!!)

    Your last paragraph describes so very well the burden on those with mental health; contrasted with somebody with a physical ailment ........ having to carry on regardless! (i.e.: dragging a broken leg along with you ) I felt that summed it up brilliantly! I do hope you will soon find the support and intervention your son so obviously needs and that you will be able to start to feel happy & safe in your lives and start building some 'happy memories' of your son finally having some form of 'meaningful life' - surely everybody deserves that?

    Don't forget to find time for yourself too, I know your son is your priority - but a 'burnt out mum!' will be counter productive. Sometimes, it's best to 'abandon a few planned battles' - to return later and start again, to save the day!!!!

  • I am actually very emotional reading your reply - especially as I myself have an LLB in law - although I became a teacher because I needed to be home at a reasonable time to make sure all was safe at home ( which in itself was never understood by my employers as I never let on the true reason I needed to be home by five o'clock at the latest, and due to this I never really progressed beyond short term contracts ) Now I no longer work, but do my best to keep house and the home environment calm . I've lost much of my past confidence and hope. As these things go, my son is going through a good phase at present and has actually got his support worker telling him he thinks he has ADHD which as an ex teacher I know is incorrect. I feel overwhelmed and I do wish you lived near Kent as much as I wish that others who took the time to offer me support were near me too !!! I would so love to meet and share with you and show my honest gratitude for your thoughtfulness and to hopefully offer my support to you - thank you from the bottom of my heart.

  • Hi I would just like to add an update to my original post. Yesterday we met with my son's support worker for an hour prior to his appointment with a consultant Psychiatrist. This appointment was very different to the appointment he had a few months ago in that the Consultant listened carefully to what my son said, how he presented and the information I was able to contribute. At the end of the assessment he told us that my son, in his opinion was suffering with an Anxiety Disorder which he called Generalised Anxiety Disorder along with long term Depression. Although I knew that my son had these conditions, this is the first time he has ever been formally diagnosed with an anxiety disorder. I thought as the time ticked by, that that would be it, Depression and Anxiety (nothing new there). However, as the appointment neared the end the consultant asked my son if there was anything he wanted to ask. My son said he would just like to know if there was anything else going on in his head and then explained some of his worries and concerns. Whilst the consultant listened he flagged up medical records and notes on his PC and noted the letters I had written and things my son had discussed with his support worker. He then turned to my son and said that he would also be contacting my sons GP in order to recommend that my son be referred for ASD assessment in London. AT LAST !!!!!!! Someone has listened. In addition, my sons medication was increased, his psychology appointments were confirmed to be ongoing for the foreseeable future, even after the current sessions come to an end. He will be having CBT to try and teach him coping strategies and will also have blood tests to rule out anything physical causing issues. I don't know how long the wait for the ASD assessment will be, but hopefully it will happen and he will know if he is on the spectrum which we highly suspect will be the case. A diagnoses won't make him better or change anything, but it would allow my son to know 'who is his' and this is so important. Thank you for all of your support and I will update you on any news, as and when.

You may also like...