So worried about 13 year old

[cheeseybeans19]

Hi all, I’m starting this thread out of sheer desperation as I don’t know where to turn for help. Apologies if it’s long I will try to be as brief as I can.
My son has just turned 13. Since moving up to high school he has become more and more anxious. He went to a local primary school where he was happy enough, had the same small friendship group from reception and was well liked by staff and friends. He always did well and was considered bright but a little too easily distracted, and resistant to change. His year 5 and 6 teachers and the senco all suspected he may be ND and sent a letter to the GP who referred us to CAHMS. He moved up to the local high school but this is obviously much bigger than the primary school, and from there I started to see a real change in him. I’ve spoken to school a lot and the pastoral team are very good with him and have been trying to help by giving him a post 16 mentor and he’s gone to a couple of one on one counselling sessions but it hasn’t helped at all. I thought it might just be the transition from primary to high school but he is now in his second year there and no happier. He cries some mornings, and by Thursday/Friday is completely overwhelmed by it all. All his spark and confidence has gone and the only time he seems relaxed and himself is when he is at home and it’s the weekend or school holidays. I am at a loss what to do, do I take him back to the GP? I haven’t heard anything from CAHMS, and getting into our doctors is extremely difficult. All advice welcomed please! Thank you.

Hi Cheesybeans19, I am sorry you and your DS are going through this, it must be very stressful. I have been through similar with my daughter and as a secondary school teacher, see so many teens struggling in the same way. Is he able to tell you what it is,that is causing the most anxiety or is it generalised anxiety?
It does sound like a ND assessment could be useful as this can offer child and parent real insight into the way in which they relate to the world and process information. It can be a relief, if diagnosed, for a child to understand the reasons behind their difficulties and that it is not them that that is the ‘problem’ but that they just have a different way of processing the world, together with a large number of others. Strategies and coping method can also be put into place which can make a huge difference. For example, at our school, a number of students find the noise and chaos of the school canteen overwhelming and so have an arrangement to eat in a classroom. As there are about 10 who do this, it also provides a support group of others who feel the same. Some wear noise reducing, discreet, headphones. Others find group conversations or interactions difficult but with guidance can be directed to others who prefer one on one interaction or to quieter lunchtime clubs which attract similar.
unfortunately getting assessed on the NHS can mean long wait times. There are private assessors (worth doing careful research if you go down this route) but they are expensive - really worth considering if affordable for you.
You can feel so powerless as a mum of an anxious child and just want to fix things but experience has taught me that when they feel like this, they need to know it is okay and normal to feel anxiety and for you to just be there with them as they feel it. Definitely easier said than done sometimes as we have to manage our own anxiety about our child, to do this. A therapist taught my daughter and I that it is not about totally eliminating anxiety but learning how to manage it; she said it like a wave and that it will rise but the fall. Reassurance - in the moment - that it will fall can help and company while it rises and they wait for it to fall, very helpful. Try gently asking the questions that need asking, during the calmer moments. I found chats while I drove mine helpful as it feels less intense to them and no eye contact.
its so hard when going through this but there will be a time, when you look back at this and see how far he has come.

@BirdieF Thank you for taking the time to reply. I’m grateful that he does talk to me and his dad, he is a real home bird and likes being with us. When we talk about how he feels about school and what it is that he’s finding hard he says all of it. He says it’s all too much, there are too many people especially in the corridors, it’s noisy, he feels awkward, he said he often feels like he could cry. He won’t use the toilet because he says there’s always people in them, he has been given permission to use a different one which has resolved that to a point but he has always been funny about toilets away from home so still won’t use it unless he’s desperate.
Some of his old primary friends have made new friendships but he hasn’t and now feels awkward around them as the “new people” are there, he says he wishes it was like it was before and they were still at primary school. He can’t get on with any of the banter or joking around, one of his friends has told his mum that my son doesn’t look happy and when he’s asked him what’s wrong he looks tearful. This boy and a couple of his other friends are such good friends to him and try to include him but it’s like they are all growing up a bit and my son just isn’t ready or coping. His closest friend is autistic and was diagnosed when he was 7, he is my son’s safety net so when he isn’t in school due to illness or anything my son can’t cope. I have just rung the doctors and got an appointment for February 12th! There was nothing sooner.

DC2 was like this. The anxiety was terrible all through secondary and just got worse despite constant counselling. Finally aged 20, they have been diagnosed with ADHD and suspected autism. And at 18, after completing A Levels, DC2 got a dyslexia diagnosis.

I don't have many regrets in life but one of them is that it never occurred to me earlier to look into ND. To be honest, the school counsellor threw me off the scent by telling me that she had given DC2 questionnaires for various conditions such as OCD, autism and ADHD and all came back as normal. The dyslexia is not severe and DC2 is bright so managed to cope but obviously could have done with support and extra time in exams.

Hi Op - my 11 year old daughter is autistic - and without support I know secondary would be unmanageable for her.

it's very standard for kids who have just about coped at primary to experience this.

Here is what I can suggest - firstly - is there any way you can afford - with family help or whatever - to pay for a private diagnosis? We spent years in the NHS waiting list system before going to a group called Autism Unravelled - they are NICE guideline certified we had a diagnosis within 3 months and a lot of individualised report etc - this involved meeting her in person.

I would then tell school your child cannot cope with a full timetable and either needs supported time out of class - as a child with suspected ND - or you will be keeping them home

I konw you may balk at the idea - but I will tell you the path of burnout - my child was going into class and getting burnt out and then eventually they literally refuse to go in.

My daughter is on an offical reduced tiemtable - it's a reasonable adjustment as given on the Dfe website for autistic children.

You will have to fight but this is your childs MH do not be afraid to give your son the time he needs at home to recover.

Btw you don't need your doctor involved at all.

We got a referral into the NHS autism pathway from the SENCO at school.

but I really can't stress enough that if you can pay for the diagnosis you should do so and save yourself 3 years of lack of support.

then push the senco at school - tell them your child is ND waiting for diagnosis.

Thank you for the replies I really appreciate the advice offered. The school senco thinks that he is just anxious and feels that the post 16 mentor who he sees every now and then and the one to one chats he had was all she could do to help. She did offer something where he would go to a group at lunchtime where they all talked about their feelings, he went once and found it horrific, it was kids of all year groups that he didn’t know and he said they were mainly discussing gender confusion and self harm. I will have a look into private assessment. In the meantime it’s just the worry of his attendance which is now at 88% I have had a couple of emails about it but I have spoken to the school so many times that they do know how much my son is struggling and reminders about his attendance don’t help!

Hello OP, I could have written your post myself about our DD. She is a late summer baby and has always been painfully shy, she had a solid group of friends at junior school, but none of them went with her to the same high school. DD wasn’t overly communicative regarding feelings and it wasn’t until I saw she had an awful cut across her abdomen that I found out she had been self harming. With the benefit of hind sight this was to help self regulate.
i spent 2 years trying to find someone to help, at this point no one had mentioned potentially ND, and it wasn’t until the second counsellor we saw suggested DD to tested for autism, that things clicked into place.
DD is very clever in that she gets v good grades without too much work, but as soon as GCSE’s hit, she had a meltdown and the mask she had been trying to wear to appear ‘normal’ slipped, her anxiety was through the roof. I won’t bore you with all the details, but we eventually got her assessed and at now 17, has just been diagnosed with autism and ADHD.
Please advocate for your son and either have the school refer to CAHMS or your GP.

in the meantime, there are measures school can put in place now, before he even gets an assessment: I had school agree to DD wearing noise cancelling headphones around school. She found the moving between lessons incredibly stressful and like your DS, refused to use the public toilets. School also provided her with a well-being card, it’s like a ‘get out of jail free’ card which means DD can leave any lesson to sit in the well-being room if she’s feeling overwhelmed. Could you perhaps arrange a chat with the school SEN lead, to discuss what reasonable measures can be put into place whilst he’s waiting for diagnosis? I also got a letter from DD’s GP confirming it was her anxiety that prevented her from being in school every single day, this got them off our backs re low attendance.

There is so much more I could write but conscious this looks like an essay, but it’s wonderful your DS is talking to you both, talk to school, push for that referral, and keep talking xx

@JazzHandsYeah thank you for your reply it’s really informative. Sorry for the late response my son isn’t very well, he’s come down with a bad cough and cold.
I have met the lead senco and didn’t find her very helpful, she just kept insisting that sometimes children need pushing outside of their comfort zones, and that as the school had offered him the group workshop that I mentioned before and a post 16 mentor they couldn’t do much more. She said it would be better for him to just try and be more confident! And that a lot of children find the transition to high school difficult. My close friend who’s son is autistic has told me that she has made several complaints regarding the senco as her son is meant to have 121 support and half the time he hasn’t, he has an EHCP but they aren’t supporting her son. I know the obvious answer might seem to try a different school but there isn’t another near by, the closest are in a city and I feel that would be even worse as my son already can’t cope with this one. I just feel so out of my depth. I’m so grateful to hear from posters who are or have been in similar situations, thank you all.

The senco at his primary school was more helpful but she only really started to speak to us as he was about to leave. She wrote to the gp, who referred us to CAHMS, and gave the high school a form to fill out but a lot of that was left blank. I have an appointment with the GP for February 11th, I’m going to tell her the school aren’t helping and see if she can do anything at all to get things moving.