Don't really know what to do - or what DS needs. Help?

[Donki]

DS, 10, has Asperger's - and is very anxious about school (particularly literacy, because whilst reading and language are fine, he really struggles with writing) and social "stuff". He is still under CAMHS which at the moment just means I have an appointment to discuss how he is doing with the Psychologist on the ASC team in about 6 weeks time.
The Ed Psych has given an afternoon's training to the school's learning mentor so that she can do some low key CBT and work on emotions, 20 minutes once a week.

He does not have a statement - school were reluctant even to put him on the SN register (now SA+ ) because he is doing OK academically apart from literacy.

He sometimes gets so anxious that it triggers a meltdown - and when this happens he can't cope with his feelings and becomes suicidal.

DS was suicidal again last night - I am at my wits end. Spent the morning crying on the head teacher's shoulder and sobbing at the GP
(who is writing a third letter to CAMHS), and I have talked to CAMHS who have in the past given us strategies to try to reduce background anxiety, which we are working on - and the Psychologist will call back tomorrow, but I expect it will be more of the same. Giving DS as much "agency" over his life as we can reasonably, preparing for transitions in advance and using visual organisers and planners, helping him to learn relaxation techniques, etc We are doing all that. I know it takes time, and has only been a few months so far....

But what now? How can I find help for him to help him cope with his feelings so that he can be more resilient? I just don't know what to do next.

Plans so far
Get locks on kitchen cupboard so that sharp objects are out of reach.
Make sure all poisons/medicines are out of reach
Apply for a statutory assessment (don't know what luck we will have)
Get a weighted blanket to see if it helps
Talk to SENCOs at possible secondary schools
Phone an SaLT whose name I have been given and may have ideas.
Get time off work to go to the parent support group

But none of this helps DS to cope with his feelings himself - where do I go from here?

Sorry it is long - at least there are paragraphs!

Hi Donki, I also have ten year olds with AS and one in particular with high anxiety levels. His anxiety, however, takes the form of withdrawal and abusive or physical violence to others when pressurised to do something he finds stressful rather than himself so our experience might not be relevant. Not wishing to panic you but as well as kitchen knives etc think about tools in the garage.

We are trying two things to try and help reduce the anxiety.

First, we have started a trial of risperidone with him which we think is reducing the anxiety a little bit although no miracles. He is certainly showing a little bit more interest in the world. We briefly tried fluoxetine but he hated the taste and it disrupted his sleep. It is a tough decision to try medication but for our son there was no way he would be able to access CBT type therapies at the moment. Our hope is that once a bit more stable on the medication he would then be more open to CBT.

Second, we have managed to get a statement for him and changed schools as he was in a very large mainstream primary with not a lot of AS experience. He has now just started in an ARP unit which hopefully will suit him better. He is still very reluctant about going in but has been there less than two weeks and already had one stomach bug and one nasty cold so early days.

Ds was the same, having suicidal thoughts and self harming because of the stress of school.

Next time he is having suicidal thoughts, take him to A&E for an emergency mental health assessment by CAMHS, this then means your local CAMHS have to follow up this assessment within 7 days and conduct risk assessments etc.

Donki What YR is your Ds in?

My Ds 8 AS has always had varying degrees of anxiety towards literacy, the worst so far being in YR 2 (KS1 SATS time!!). This is one of the biggest re-occuring issues we have had with him with regards to school...the problem being they don't see the anxiety they just see a disruptive, argumentative Dc who is refusing to do the work. My Ds is also doing well with his reading (although I have picked up a few discrepencies here and there), and is doing well in maths now.

I came across this earlier. I found it very interesting because going by what he has said in the past/now, and looking at his work I think I'm see why he may be getting so anxious especially around test time .

What happened to us when ds was having suicidal thoughts and self harming.

Was seen in A&E by duty CAMHS.

Ds told them he had suicidal thoughts and hurt himself deliberately due to his worries about school etc.

They did a risk assessment of ds to himself and to others and discharged him into my care with a safety plan in place.

CAMHS contacted next day to see how ds was doing.

I had to remove sharp objects, medication and anything else he could use to hurt himself with.

I asked whether he should attend school. I was advised that I would need to consider whether ds going to school would cause an increase in his self harm or thoughts of wanting to die.

Local CAMHS did further assessments and eventually signed him off from school.

I had previously already applied for SA. Ds was struggling in MS without any support. He was given a statement and changed to an indi MS with specialist provision on site.

Once off of school, ds's suicidal thoughts and self harm stopped.

He started his new school a few weeks ago, suicidal thoughts haven't returned and his self harming has reduced.

You can just tell me to piss off and I can see you and your Ds are having a really tough time at the moment BUT a wise person once told me to help with anxiety first you need to find out what is causing the anxiety....what is it ABOUT the literacy that is causing the anxiety?

okthatsweird
He physically can't write well - we have started him on touch typing, but he is not very good at that yet. It won't work for short bits of text on worksheets nor for maths.

He had years (until year 5, when the OT assessed him) of being told that he wasn't trying hard enough with the writing. That it wasn't good enough. That it was too untidy. Made to practice by writing out lesson objectives, then getting into trouble for not having had time to do the rest of the writing, and being kept in to finish work.

Since most school work involves writing of some sort he has built up a huge amount of anxiety and task avoidance around almost any school work, but particularly literacy.

This will still have to be overcome even when he can type. before he will actually use touch typing (as well as learning the physical skill being that bit harder than it would be for other children, although much easier than writing by hand)

Lack of social skills/difficulty with social interactions and making friends is also a cause of his anxiety

Thank you to everybody for replying. Just typing it all down and thinking through next steps helped too :)

Donki, the causes of your ds's anxiety is very similar to my ds. My ds could not cope with his feelings on his own, he needs help.