I don’t know what to do with my child anymore

[Jackfruit]

I think my 7 year old is on the spectrum. School agree and are supportive but I don’t know where we go or what we do next. We haven’t seen the SENCO.

He has huge explosive outbursts at home. Seems to be ok at school but definitely has cross moments which his teachers have spoken to us about.

At home anything sets him off, something different, it can be anything. Something simple such as giving him the wrong spoon results in it flying across the room. We are frequently hit, punched and bitten. He has a few sensory issues.

He is so so angry. He takes up to an hour to go to sleep. He cannot be taken away from something he is focused on, something nursery commented on when he was small. He gets obsessive about certain subjects and needs to know everything about it. He is fussy with food and won’t try anything new. I have to be so careful to get thing ‘right’.

He is academically really great so I am concerned we won’t get any support as he is clever.

I don’t know where to go or what to do. Do we go to the GP? How do I get an assessment? How do we cope with the meltdowns? I’ve not read anything that tells me how to try and prevent them or give him coping strategies. I feel totally worn down. I have no idea how to cope with my child.

He knows he isn’t ‘normal’, he tells us this. I worry we won’t get any diagnosis or support and I will be left with a teenager who can’t cope. I already know CAMHS are stretched beyond belief.

He is a bright funny clever beautiful boy, but I think he’s so unhappy. Where do we go with this?

It sounds very stressful . There’s a book called Autism: understanding and managing anger by Andrew Powell which you may find helpful. It’s a NAS book and has lots of tips and strategies about how to manage and avoid meltdowns. The other book that’s recommended often is The explosive child.

I would speak to your GP without him present. Take a written list of all your concerns and issues including everything you’ve written here. Make an appointment with the SENco too.

What sort of sensory issues does he have?

That sounds very stressful.

I second all the things open says

Definitely try and speak to the SENCO, if you can I would also push for a referral to OT.

Things that work in our house to avoid meltdowns are visual timetables, now/next visuals and things like to do...done lists. Sand timers are also really useful as a countdown to finishing something. We also spent a long time doing ABC charts to try and work out ds's triggers so that we could avoid them as much as possible.

Have you read up on Sensory processing disorders? 'The out of synch child' is a good place to start.

He really doesn’t like timers. But I have heard of that idea before. He hates anyone touching his hair, we can’t dry it and getting a hair cut take a lot of negotiation. He also doesn’t like some clothes because of how they feel. I’m waiting for contact from the SENCO but have heard nothing. I feel like I’m in limbo.

He’s also massively sensitive and gets very upset over stuff. He thinks we don’t want him. Which of course we do, he’s our boy and we love him.

I have a very similar boy. Don't worry about diagnosis - clinicians can see what is there. Have you asked the school to make referrals? They could do it or the GP could. You can usually self refer for OT / SLT.

My son was 7 when the wheels fell off. He is very explosive and school got worse and worse for him (he was calmer at home). Over the last 18 months he's been diagnosed with ASD, gifted IQ (ed psych), sensory processing disorder (OT), narrative difficulties and social communication problems (SLT), anxiety (CAMHS), hyper mobility (physio). He doesn't go to school anymore and starts at a specialist ASD school in September. Honestly, being bright and coping at school doesn't mean he won't get seen or diagnosed.

It's a hard road. I've just read so much and tried a lot of things. We too have to go to great lengths to make sure things are 'right' for fear of him kicking off but it does get easier.

My son also says that he thinks we don't want him or hate him and also says he wants to die etc. A lot of it is his anxiety and awareness that he's different. I think this will be the hardest bit of growing up.

This is all really helpful thanks. I just feel so lost. I’m so worried he’s unhappy. I’m going to make a GP appointment and chase the school about SENCO. School are so pushed already and have a lack of funding.

We try not to overload him with information but I worry that any change of routine or doing something different is going to result in him losing his temper. Everything requires negotiation.

He doesn’t like to talk about any of this, he puts his hands over his ears and says he can’t hear us. I also worry for his younger sibling who already agrees with everything he says for an easy life.

My ds's are sixteen now but we went through similar when they were nine or so. With the benefit of hindsight your priorities should be (i) Getting a diagnosis (your Gp is the first port of call and will refer you to whoever does the diagnosis in your area be it CAMHS or community paediatricians) and (ii) Making sure that school puts in more support for your ds. It doesn't matter how academically able or not he is if he has emotional, social or behavioural difficulties then they should be putting in support. Both of mine are academically able but still have an EHCP for instance because of their social, emotional and behavioural difficulties. CAMHS in terms of providing direct support in our experience was as much use as a chocolate teapot but all the same worth engaging with because they did provide evidence for the EHCP application (and DLA for that matter). We did have the dubious advantage that mine had meltdowns at school so the school really could not deny they needed a higher level of support than the average child.

School have witnessed a couple of his meltdowns which in a way is good as they’ve seen it. They are totally on board with it but I don’t think they’ve put enough interventions in place as yet for us to get a referral. I’ve heard about the All About Me form that gets completed and school have told me to get the GP to fill it in but apparently they should be doing this. I’m going to talk to school I think.

I think when they get home they just want to feel safe, and for there to be no demands. Some children feel safe when there are very clear routines/goals (this can be a further source of anxiety and tension to those looking after them trying to fit in with the child's expectations), other children feel safe when very little happens and there are no demands at all..(ie eating on the sofa and watching favourite programme or playing with football figures, hanging around in the playground or back garden)

My personal opinion is that to do lists and timers make very goal driven anxious children even more anxious/irritable, as do telling them what expectations of behaviour is etc. Could your son be needing a completely different kind of setup from school - perhaps just complete peace and quiet and nothing to remind him of the outside world. Often remembering the day in school and brooding upon tasks to do, homework can make things worse, worrying about doing something wrong the next day..even if at school they appear to be very motivated and engaged.

Ds was able verbally but not very good at academic tasks (SPld) at that age, I think we very much refused to worry about his academic performance or stress about spellings or handwriting or work set, and that helped a bit, so his worries were really all to do with the playground and people not playing with him, or his perception of being left out. At home he was fine because he just played with his toys and his siblings. It wasn't that easy, he fought with his brother and his sister (twin) found him increasingly difficult to cope with, (Her friends thought him weird) and we found him fixating on things like Formula one, screaming at the music to Dr Who (too frightening) or his table manners and food fussiness were all not very easy to cope with. But in general the more we understood, about how he processed information and why he was refusing to eat something/listen to something the better we were able to plan for stress free family life.

So reading up, books like The Out of Sync Child and the Out of Synch Child has Fun. Lowering expectations on tidying, homework, ability to be polite or patient in social situations, or cope with team games.

And it gets better. Ds is really much easier now. A lot of nurture from primary school once he had a diagnosis aged 8, a spell of home education in his secondary years, and then an EHCP hard won further down the line. Ds seemed to be very unhappy between 8 and 10 some days, and other days I remember my happy, smiling, wonderful son..his obsessions were wonderful hobbies and interests as well as obsessions - football, tube travel, historical visits, football stickers, thunderbirds...now it is drama, football, history, politics, football.

It will get better, knowledge is power.

Ds was always very sociable btw, just not so good at communicating with others according to social norms...Now he is what I would call "normally" sociable, he has friends, he is witty and is aware of nuance. That has helped a lot. He also doesn't have meltdowns, and has a lot of self restraint in dealing with people, even his parents when we annoy him!

On occasion we would keep ds off school or be late if it helped reduce stress getting ready or if he was worried about something. We often kept the SENCO informed at short notice if something was bothering him, or someone was bothering him - ie gym kit, or a worry about some piece of work, or a friendship issue, and remind them in a rather unsubtle way that these problems might affect his attendance, so it was worth a little bit of input before things deterioated. He is one of the best behaved students in his school at the moment and his attendance is 100 percent, so that effort to get things right is not spoiling or whinging on your part, it will long term make him a better and easier student for them to deal with.

OT is also a really important overlooked aspect of dealing with ASD. When we finally saw one when ds was 14!!!!, she helped so much. I wish we had been referred to her literally years before, but sometimes with an ASD diagnosis there is none of the help that a DDyspraxia diagnosis might bring, motor and sensory difficulties are just written off as part of the condition not requiring any specialist input.

Ds2 used to do the 5k Park run from when he was 12 - starting with the mini marathon we had locally, hopelessly bad at running and not a natural athlete, it was a fantastic way of strengthening his muscles and improving his confidence. I know that the Park Run do a shorter course for younger children..could you look into that near you?

OT's always suggest lots of good strategies and options, which will seem obvious when you think about it, but for some reason aren't obvious when you are dealing with meltdowns and the exhaustion of everyday life.

I also give ds a multivitamin daily.

I found The Autism Discussion page books helpful about some things - at least in increasing my understanding.

if you have facebook its just called Autism Discussion Page - and a bloke called Bill Nason who seems to be a professional in this area. It has lot of info on it (which goes into the books) so look at that before buying a book.

It is overwhelming. There is so much in your post from diagnosis, to school support to coping with meltdowns. is there one particular thing that you could focus on (aside from pursuing the diagnosis via the GP)