CAMHS

My son is potentially on the autistic spectrum (awaiting diagnosis), he has also been suffering with anxiety tremendously since September. It all started following the second lockdown of schools, when the time came to return he became very self conscious about his appearance and struggled to make it to school for many days. He changed schools in September and is now in year 8 at High School (we have a 3 tier system where we live), he has only made it to school for 1 day since the start of September. Anxiety was huge in regards to the school environment and his appearance. Prior to this he had been leaving the house and was engaging fairly well with family life. Over recent weeks he has now started to feel very anxious about leaving the house, has not been able to make it to see friends and is now very worried about going out or doing anything. The most he can do is a dog walk once a week. He has also started to want to eat in his room and not engage.

We had a call yesterday from CAHMS and they offered us a virtual apt on Monday, his first reaction was "do I need to leave the house", my answer no, then he said do I have to on camera - of course my answer was yes. His answer was no I am not doing it. I suggested he be off camera, and listen but no he is adamant. If I keep on at him he will dig his heels in even more, at the moment he is happy for me to talk to them but if I keep on at him this may change.

Does anyone have any experience of CAHMS and if they will conduct an apt with just myself, obviously want to get a diagnosis potentially of what is going on for him so don't want to spoil the appointment but also need to know if I have to nag at him that he has to be there and listen.

He really struggles with strangers, really struggles with talking and opening up to people and i am very concerned about his mental health. I have heard so many horror stores about CAHMS just looking for some re-assurance they may be able to conduct this first apt without him as they were adamant on the phone he had to be there.

  • Thank you so much for your reply, yes it does give me a small glimmer of hope. It is just so hard to see him going through this and not knowing how to help and also seeing that he doesn't want to engage which could be the only source of help for him

  • Hi. I'm so sorry to hear you're having such struggles. We know the feeling of being scared for your child's mental health. Our 2.5yr journey is very similar with our teenage daughter. She has high functioning ASD which was diagnosed after she developed anxiety and depression. Her main source of anxiety is school (she misses 1-3 days per week) and she also got steadily more scared of doing things outside of the house.

    We've referred/ re-referred our daughter to CAMHS several times as we try things, make little progress and go back for more support. CAMHS in our area (Buckinghamshire) provides support for the anxiety/ depression but not for the ASD so our experience has been that they only address half of the puzzle.

    There are various tiers of CAMHS support and we're finding we need to try everything on the lower tier before our daughter's case can be escalated to the next tier. We've been working at the first tier of therapy/ support. So far we have had the following from CAMHS...

    - an anxiety CBT course for parents: this really helped us to understand anxiety much better and taught us CBT techniques. We've had some limited success with the CBT (apparently it can be less successful in people with autism) but understanding anxiety has been invaluable

    - 1:1 CBT counselling for our daughter (provided by Barnado's buddies in our area). The strategies offered make sense but our daughter has not engaged with them so this has not been very helpful. Your son may respond differently.

    - A post-ASD diagnosis course about ASD. It was useful as an intro for a basic understanding but not enough all by itself.

    We just had our latest CAMHS assessment this week to try to escalate to the next tier of support. We've been told that before they will do more on the anxiety/ depression, we need to do more to support her with her ASD. The logic is that supporting her better with the ASD will reduce her anxiety/ depression. Specifically we have been told to go back to school (number 1 anxiety) and get our daughter more support (that will be essential for you too and CAMHS will not do that - you will need to read the school's SEND policy, speak to the school's SENDCO and ensure they put a SEND plan in place. Also get to know your local SENDIAS - they provide advice and support to help you get what you need from school). We've also been told to connect into ASD support networks which is why I am now on the NAS website :-)

    Regards the assessment, it will be more effective if your son can speak to the CAMHS person so that his personal experience and voice is heard. If that's not possible would he write something or find another way of ensuring his voice is heard? Our daughter always gets anxious but has managed to speak 1:1 in the 2 assessments we have done. She refuses point blank to do virtual meetings so we had to do face-to-face.

    And finally some personal experience. We've found we needed to change our approach when our daughter is feeling high anxiety. I hope this is helpful, it's been trial and error for us (lots of errors!!):

    - it's a rollercoaster but that means when our daughter is really struggling, we try to keep the faith and never give up, knowing the rollercoaster will go up again at some point.

    - the anxiety literally stops her from doing things; she's not choosing to be difficult. It can be so hard to remember this when we're worried/ tired but it's so important to avoid making her feel guilty or feel punished for being anxious

    - we try to say/ show we care and remind her we're there to help when she's ready for it

    - her decisions need to be led by her. We try to encourage (using the CBT techniques) rather than push (pushing just worsens her anxiety exactly as you've seen with your son)

    - we try to be a positive voice vs the anxiety's "voice" (which just over-inflates whatever she is worrying about and tells her she can't possibly cope with it).

    - we try to get her to think about what positive step (however small) she could take when the anxiety is locking her down - we've learnt that as soon as she takes a positive step the grip of her anxiety starts to weaken and then she is able to do more positive things and find her way back to a better place. It can take hours, sometimes days, for her to find that ability to take a step

    - we are really honest with her - if she is doing a behaviour that will sustain her anxiety, we help her understand this, remind her about the anxiety cycle (a very real thing in our experience) and try to give her belief that if she can do different behaviours she has the power to change how she feels

    - with school we're pursuing a "just do what you can" policy which is not solving the whole problem but is giving her some sense of empowerment in an environment she finds really overwhelming. 

    A long reply and I really hope there's some useful stuff in there. Good luck. There are many of us on this journey.

  • Hi there,

    I was under CAMHS many moons ago, from primary age, as such there may be possibility for you to have a few sessions by yourself in order to show a developmental history and the backstory and identify anything that may have been a trigger but ultimatley there will come a point they need to speak with your son, anxiety is horrible, i myself was in a point where i wouldn't leave the house (and in most cases i still dont (with the exception for work and going to the shop), my anxiety came from bullying in school as i was unfortunate enough to experience bullying through all education stages and misunderstandings and hypocrisy from adult leaders too, this started my issues and then they grew as sadly with some of the "lovely" citizens of the UK that love to be anti social have caused immense fear when im out and about which has given cause for me to walk around with my keys in my fist because im terrified and I am hyper vigilant when outside.

    I digress and back to the point, it may be possible to have your first few sessions with no camera on, and it will allow you to speak with the CAMHS practicioner via voice and build up a rapport first, this may help your son build up confidence and trust in this person, and allow engagement, and then once he is ready and comfortable with this new person, he may decide to have the camera on.

    I feel it may be a trust thing for him, if he has experienced any negativity such as bullying or anything, it really does hammer your trust, so doing it the way outlines above could make it easier on his anxiety, alternitivley, if you have a session with CAMHS and they allow it yourself, you could ask if there is anyway they could start a session by asking questions about his special interest to pull engagement then move off from there for example if he likes fortnite: "did you see the latest fortnite skin? what do you think of it?" then it would pull him into a dialogue and bring an air of relatability.

    I am sorry if I have waffled on horribly, I am still working on my own written communication!

    Kind Regards,

    Yeke