Family in crisis - where to look for help?

Hi, I’m a newbie to this forum and I desperately look for  help for my 17yo son and my family.

My son has been suffering from OCD for last 3 years. He is most likely to have ASD and was referred for assessment last year but he doesn't agree to have this assessment. He had CBT two years ago and it helped a lot with some aspects of the disease. Last summer we were back to CAMHS as he decided to starve himself and stopped eating. I must say that he is still angry with me for these therapies and consider it to be carried out against his will.

In the current situation of lock down, my son's condition deteriorated a lot. He is disconnected from the world doing rituals all the time until exhaustion like a broken machine. Unfortunately, my husband got involved in the rituals as he wanted to take some stress away from him and help our son but this turned against him. Now my husband has to do all the rituals and my son is absolutely dependant on him. My husband has to put him to bed, take him to toilet, put his shoes, walk him to the park etc and all this takes almost 24 hours as my son doesn't need much sleep. His dinner last for almost 8-10 hours and at best we go to bed 3-4am, at worst 6.30am.

The problem is that my son doesn't agree for therapy and medication. We are in contact with CAMHS but they cant do anything unless he agrees.

We don't have any family life anymore, we are exhausted and tired. We are family in crisis and need help asap to be able to further support our son. We need help with how to manage this situation to improve it and not to make it worse, we need somebody to work with us towards convincing our son to start therapy. We feel abandoned and isolated with our problem. I'm sure there must be some help like family therapy, I just don't know where to turn to find it. CAMHS seems to be useless in a current scenario.

I hope there are people here who maybe have been through something similar and could suggest where to look for help and how to convince our son to go for therapy. Thank you.

  • Hi and welcome to the forum :). So sorry to hear that you’re all struggling like this right now. Firstly, autism and or OCD genuinely is not a disease, but a “difference” in how a person relates to the world. Your son doesn’t need therapy or medication per say, in order to help him and your family to get through these difficult times. What would benefit you all, is tightening the structure in your son’s day. By that, I mean ensuring that he has an enjoyable and predictable routine in place from morning to night. Anxiety tends to be the the dominant emotion in those with OCD, and certainly in autism. Your son is effectively crying out for help, and if you can ensure a calm, reliable environment for him to live in, by way of responding to him calmly no matter what(not saying you don’t, but it’s important to keep your interactions with your son as calm as possible and that you use a neutral tone of voice, so as not to increase his anxiety.) If you can show your son on a daily basis, that no matter how he is feeling, no matter how distressed he is, that he can rely on you to maintain the boundaries at home, by managing him via a scheduled day(with things he enjoys doing, as well as some experiences/challenges that stretch his ability as well, you should see his heightened OCD rituals subside. Basically, the more predictable and calm the environment, the less he will need to carry out these rituals. If your son’s OCD doesn’t decrease over the coming weeks, and he remains in clear distress, then he needs to be made aware that there are therapists out there who can assist him.. It shouldn’t be difficult to find one online even, in these times, who could support him, but only if he wishes. If you and your husband need moral support in dealing with your son, feel free to post here anytime, and I’m sure we’ll do our utmost to support and help you with advice and guidance. You’re not alone, though it might feel that way. Sometimes, when things are at their worst, all you can do is take it one day at a time. Hang in there. xx

  • Firstly hi. I can only help with regards to how I was at that age until mid 20s 

    I was anorexic, obsessed with losing weight. I was thought to have OCD, I'd count things in my head in pairs. Turn lights on and of an even number of times before entering or leaving a room. 

    Lots of things that bought my functioning right down. I was deeply unhappy. My parents had split up when I was 16, I had no home and was left to find for myself. Everything was different, nothing seemed right, I didnt know I had ASD.

    ASD I think you said is a disease. Maybe think of it like a different way of thinking. Yes we struggle socially so much, however we have alot of qualities that others dont and see things others miss.

    Why is your son super stressed right now? What's happened? If it's the current state of affairs, things are being lifted day by day. 

    The thought of speaking to a new therapist.....nightmare for me. Plus NT therapists dont always understand, making you feel more alienated. 

    My thoughts are all over the place on this but if it was my child, I would try and ask what's on their mind and not push the issue.

    Leave out their favourite foods around the house, any foods better than no food at the moment. 

    Join in with things they enjoy. 

    Try keep a routine

    If say for example, they like NASA, look up some podcasts, videos, articles on NASA and try to refocus their stressed out energy onto their special interest.

    If hes not happy aBout a therapist, pushing the subject will make him more anxious and more likely end up with more rituals and withdrawal.

    We re all feeling the stress at the moment. I've noticed so many of us having a rough time right now on the forums I go onto

    All the best 

  • Jules and mouse2 thank you both for your replies. I understand that OCD and autism are not diseases but they simply reflect our neurodiversity so please forgive me unfortunate wording in my post. I did not mean to upset anybody. Thank you for your useful comments.

    However, the main problem is that we struggle with establishing and involving our son in any kind of daily routine. He is not interested to do anything and he even doesn't want to talk. The only thing we do together, except many rituals my husband is involved in, is a walk in the park in the morning but again he doesn't want to talk and mainly walks with his eyes closed so we have to hold his hand all the time - I guess this also counts as a ritual. We have dedicated last four weeks full time to support our son but we can't break this vicious circle and need more help and advice on what else we could try to introduce some routine.

  • Hello, sorry to read your story, I can understand you are loving parents stretched to the limit.

    I am thinking a bit about your son's sense of identity, as he is 17.

    When you are suggesting therapy for your son, make sure that he knows you are not trying to cure his autism, but rather the effects of it seen in OCD and hyper anxiety.   The eating refusal sounds like a control issue if he thinks you want to take his autism away, or possibly something connected with his age, when many young people are constantly hearing or seeing messages that they will become adults or start to be independent from their parents and he is not ready for that stage of growing up.

    The autism is part of his identity and as weird as it sounds, he needs to keep being autistic as it's how he sees the world and it has many benefits such as ability to map information and carry out intense activities. Try to make sure that you are not trying to change his identity, stop him being autistic or anything like that.  The therapist needs to make that very clear too.  I resisted therapy when i was younger  ( I didn't know I was autistic) because I didn't trust them and I thought they wanted to change me into another person and I didn't like that other person.  

    It sounds cruel asking you to find positives if you are sleep deprived - sorry - but try to make sure the autistic personality is talked about in a balanced way, where positives and negatives are made obvious in your family and he does not feel like an outcast or the Different One. It's particularly hard when you are a teenager to feel a crisis of identity.  

    I hope that makes some sense. 

  • Quick comment, others have already said something somewhat along these lines.

    He had CBT two years ago and it helped a lot with some aspects of the disease.

    but,

    I must say that he is still angry with me for these therapies and consider it to be carried out against his will.

    It sounds like he doesn't altogether consider it to have "helped a lot", or else it was a huge ordeal for him for some reason and he doesn't think it was worth it.  Why doesn't he want to do it again?  Do you know?  If not, can you ask him?  Can't really pronounce on how you can "convince him to go for therapy" without knowing why he doesn't want to. 

    If you've never asked him the question before, he might well be startled by it and not know what to answer at first, so if necessary tell him to take his time and you'll come back later, and maybe say he can write it down if he likes.  That'll also help to show him that this isn't just a new way of trying to pressure him into agreeing to go.

    At a guess, he may be scared in this case because he thinks the aim of treatment is just to force him to stop doing his rituals, and for some reason he can't cope with doing that (clearly he can't, or he would have stopped already, they sound exhausting).  The aim should be to put right whatever is causing him to suddenly need to do all these rituals and to fall apart if he can't, or, failing that, to find him some other way of coping with that underlying problem that works equally well but doesn't take up so much of his day.  To develop a way for him to cope all right without them, not to force him to do without them when he can't cope.  Make sure this is the aim, making sure that the therapist does intend that as well as you, and then make it very clear to him that it is.

  • The aim should be to put right whatever is causing him to suddenly need to do all these rituals and to fall apart if he can't, or, failing that, to find him some other way of coping with that underlying problem that works equally well but doesn't take up so much of his day.  To develop a way for him to cope all right without them, not to force him to do without them when he can't cope. 

    This totally.

    Others have given a lot of good advice.

    For what I know CBT doesn't really work for autism so his reluctance to engage in it again should be realty investigated and respected. Show him that you seek to understand.

  • Hi my son sounds similar , he has autism , ocd social anxiety disorder and depression we also found Camhs useless ,in the end we paid privately for psychologist and psychiatrist , for our son medication to help with anxiety has assisted him 

  • Hello there

    I worked for 10 years with children and YP with behavioural difficulties, primarily those on the autistic spectrum, am diagnosed with ASD and had OCD, anorexia and severe anxiety as a young person.

    I am very sorry to hear of the enormous strain you are all under.  It is completely understandable that you are at your wits end and reaching out for support.

    I take it that your son is still in education?  Ask his school/college for an Early Help referral - they are able to do this for you with only your verbal consent.  An Early Help worker will work with your family to help find a way forward and can work with other professionals to ensure that they are fulfilling their duty.  I have worked supporting families in very similar situations to yours - in some cases CAMHS have done home visits in order to build up a rapport in a safe environment for the young person.  It is within their power to do this and I feel that this is an avenue that they should explore.  As someone else has mentioned above, private therapy is also an option if this is within your financial capabilities. 

    With the seeming severity of your son's mental health issues, I would argue that it would be difficult for him to give informed consent either way and the adults around him should be working in his best interests with or without his consent.  I know that is likely to be an unpopular opinion amongst some; however, when I was my most unwell as a young person I self-harmed very severely, developed septicaemia on two occasions, attempted suicide, had extremely low blood pressure due to the anorexia, had developed an arrhythmia due to bulimia, abused substances and was just generally pretty high risk all round, and I still refused to engage with MH services.  Fortunately, the choice was taken out of my hands; I was very angry about this at the time but now am certain that my life was saved by adults acting against my wishes in my best interests. Ultimately, I accept that I did not have mental capacity (in the legal definition of the term) to make choices for myself because I was so unwell.