School Refuser

[VolvicAstronaut]

Hello.

First time posting, I’d very happy for any advice given.

My 12 year old has a diagnosis of anxiety and OCD

He has recently started a specialist school, at the moment he is only staying for 1-2 hours per day. He only went once this week (Tuesday) he refused to go the other days, we would never force him.

My partner, I and my other children whom are age 16 and 21 always praise him for going and sometimes come along to offer their support. We always tell him how proud we are of him, I’ve even tried to bribe him with more Lego sets, he is a huge fan of the sets but nothing seems to work.

Staff have said that he needs to start attending regularly, and from Monday he needs to start coming every single day. We fought for an EHCP, school is a well known SEN in London and we all believe once he gets settled; he will do very well academically.

He is very quiet boy, prefers to stay in his own room, He always has been. Will only speak if spoken to, prefers to spend time at home building Lego or on handheld console.

Doesn’t like to attend family events, days out and holidays; which I’m very sad about because we have no choice to leave him behind, with my mum.

He is no trouble; it’s all and it just makes me so sad that he is different from my children, and I’m constantly having to explain myself to family members and friends why he is not with me. I really wish he was like my other kids, although I love him dearly, but it’s almost as if he doesn’t fit in our family as much as we try and encourage and include him in everything.

AIBU for feeling like this?

Would it be unreasonable of me to explain that he needs to start attending school everyday? Even though I know school and even leaving the house makes him very anxious.

He sounds almost exactly like my child.

Has he been assessed for autism?

Also, has there been Ed psych involvement, or occupational therapy to find out what he's finding difficult?

WOW!!

What a god send you are 🤗

I have never ever had someone else I can relate to, no he hasn’t been assessed for autism. I actually thought he might have it, but there are no signs.

No; no one else is involved, I’ve asked him many times what makes him feel anxious about leaving the house.

People
Noise
I don’t feel safe

He only feels safe at home or at my mums house.

How did he get the diagnosis of OCD and anxiety?

Can the staff visit DS at home or somewhere out in the community to build a relationship and trust? Then transition to visiting the school after school when it is quieter and building it from there.

Does DS’s EHCP not include therapies?

When you say there are no signs of autism, not liking noise, too many people, having a restricted safe space and anxiety are all indications.

My 12 year old daughter has EBSA (Emotionally based school avoidance) she is a quiet sensitive girl and says school is scary. The packed corridors, the dinner hall, the noise, being sat at the front of a class all set her massive anxiety off. She has now been to school today or yesterday after attending the first 3 days of the week. I don't force her to go. Head of year and senco are very understanding. We are awaiting appointments with camhs and mind.

We found for our dc that moving on to secondary school was almost like an ADOS - it seemed to suddenly bring out all these behaviours and we didn’t know what it was at first but quickly sensed that the change, the increase in noise level, unfamiliar surroundings, lots more people, unfamiliar people etc was just too much. Diagnosed with asd soon after and we actually de registered to home educate

The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.

My 11 year old is exactly the same OP, he was diagnosed with Autism when he was 5, I would look into an assessment, some children mask and no two children on the spectrum will be the same.

This is exactly what happened with my ds too.

We had to go down the private route. To be honest with you, we do not live in the best of boroughs in London… it’s very hard to get any help, waiting lists are very long, it’s very under staffed, we are still waiting for a CAMHS appointment.

Would that even be possible?

Staff seems nice and supportive, but don’t you think that would be a bit of a big ask?

No, it doesn’t include anything.. as above we are still waiting for a CAMHS appointment.

Oh okay.

I guess that’s what we are going to have to do, it’s just all so expensive.

He sounds very like my younger son, now 17. We home educated him because he couldn't cope with secondary school. Recently diagnosed with autism.

What support has your DS had with his anxiety? My son is now having CBT, but the therapist takes his autism into account. Your DS needs help to manage his anxiety - that means professional support and gradual exposure. My DS creates an exposure ladder with the therapist's help, then gradually works his way up the ladder. Recently managed to walk to the local shop alone for the first time 😃.

And there's no point the school insisting your son starts attending full time if he can't. They should know better.

Also, I wonder how much the OCD is feeding your son's anxiety. My older son has it and rarely leaves the house. It's exhausting for him.

Mine too.

With an EHCP you don’t need to sit on the normal waiting lists. If it is in F it must be provided. If the NHS can’t or won’t the LA must commission independent assessments.

Did the EHCNA not include assessments from an OT, SALT and psychiatrist &/or clinical psychologist? They could have been part of an EHCNA without the need to sit on the normal waiting lists.

Are you still within the appeal window? If you are you need to appeal. If you aren’t you need to request an early review in order to try to get them included.

It is possible for a slow transition starting with staff visiting DS at home or locally.

Well, he doesn’t have any outside support. We do the best to try and support him and make him comfortable.

My sons OCD is very bad on a scale of 1-10 I would place him at 9.

I’ll give a few examples

Obsessive cleaner
Showers at least 3 times a day
Refuses food if made by myself (likes to prepare his own food - even though he doesn’t eat much)
Intrusive thoughts
Everything has to be in a specific order

List goes on, I could be here all night.

Is it OCD, though? In autism a desire for repetitive behaviours, or sameness is part of diagnostic criteria. The difference is maybe that OCD behaviours are often driven by negative/ intrusive thoughts, where as autistic differences can be driven by enjoying the repetitiveness, or resistance/distress at change.
autistic people can have OCD as well.

Hi

Thanks for replying!

Yes, I think I am going to have to appeal. The thing is; I don’t know anyone else with a child with a EHCP I was hoping to be able to speak to some of the parents at my sons school.

This sounds just like my daughter. She has since moved past it with a lot of support.

However, I think that it is more common than they’d like you to believe, and that the movement up to secondary can be a real trigger. I know of a few children a lot like yours.

I don’t have any suggestions that haven’t already been made though. Would home ed suit?

Try not to feel that he doesn’t fit, jigsaw pieces come in all shapes and sizes.

If the school is well known for SEN there must be lots of other parents in similar boats, ehcps etc?

This is exactly what I am thinking.

My son has rituals and routines but they dismissed OCD as he doesn't think anything bad will happen if he doesn't do them. He just does them because he likes to.

I'm amazed that with a diagnosis of OCD and Anxiety nobody during that process flagged up autism. You say he has none of the signs but he has lots of them.

Autism isn't just about the stereotypical signs you see on TV, you would never in a million years think my DD was autistic out and about but she struggles massively with change, noise and other sensory issues but she's intelligent and compliant and flies under the radar. Communication wise she's very articulate about things she wants to talk about but if you ask her how her day was she would answer but never reciprocate the question as she struggles with 2 way communication, she doesn't even realise she's meant to say something else. It took starting High school for things to really be obvious, she internalises everything she finds difficult and she would get home exhausted, completely isolate herself and Shutdown (sort of opposite of a meltdown) as she'd been masking all day.

Restrictive behaviours can be needing to maintain sameness too its not necessarily about only ever drinking out of one cup or eating the same thing.
Once he goes to the school a while that will be his new routine and it'll be less anxiety inducing. Have you done social stories, do the school have a video tour he can watch?
Will only speak when spoken to - so doesn't freely take part in two way conversation?
Has a special interest in lego.

I really would go private, our diagnosis came through 12 weeks from initially making contact with the clinic it's 4 years for NHS here and DD probably would never have met the bar anyway.

As for holidays, some people with autism find renting a camper van is a good way to venture out, get the same one each year, just do the local area to start then venturing out further. Being in a camper van means you get to take your things with you.

Sorry you are in this situation, my daughter school refused from year 8, hate school refusal term, it makes it sound like a choice.
I think school are being unreasonable to push for attendance every day, it should be gradually built up.
I would definitely ask for an autism assessment, my daughter was diagnosed at 14, tbh before she started to refuse school we had no inkling she was autistic .
But being unable to cope in busy noisy environments , anxiety, all encompassing interest ( lego?) Findng social interaction difficult ( family parties) does strongly point towards possible autism.
My daughter now has something called education otherwise than at school (eotas) stipulated on her EHCP which is 1:1 tutoring at home or at small local provider and therapies.
Sadly we did have to pay for private autism assessment (£1700) as although she was accepted onto nhs waiting list it was 3 years long ( on top of 6-9 months it took to be accepted onto the waiting list) .
We then paid for private SALT and OT assessments which were an eye opener ( our LA refused to do these as part of EHCNA) we then got provision they recommended included on her EHCP but we did have to go to tribunal to get it.
I know many people will say to 'make" your son go to school but sadly it isn't that simple as I'm sure you know. If he's pushed too far it may well damage his MH and cause more problems in the long run. I hope it works out well for your son

This happened for us. DS13 currently going through it. Total disaster, no diagnosis yet, school have been a nightmare.
DS11 is almost certainly ASD, we've known it since he was little, school only got on board 2 years ago. I'm not expecting secondary to be helpful in September but at least we are prepared. DS13 completely took us by surprise with panic attacks, hysterical crying and anger. It's been a rough few years.