DS9 ran away from home because...

[Eyerollforwardroll]

... He doesn't want to be in his Xmas play.

Seems ridiculous I suppose but;
Ds likely has high functioning autism. I first raised concerns with the school 4 years ago but as he follows rules, is top of the class and generally masks his behaviour they were not supportive at the time.

In the last 2 years he's occasionally been overwhelmed at school and been unable to maintain the masking. I've spoken to GP and he's been referred to camhs where he's had a few initial assessments, but its a very very slow process. The school were still reluctant to get on board until two meltdowns where he pushed other children over and became extremely agitated when a lunchlady got as close to his face as possible to talk to him (in her words) .

He absolutely cannot cope with excessive noise, he particularly hates singing. For last years Xmas performance the school offered that he do the lighting/screens rather than be on the stage. This worked well for him as he was still a part of the production.
This year however they are insistent that he must physically take part, be that singing, dancing or narrating. He is adamant that he doesn't want to face an audience of 100 parents. He thinks his classmates will laugh at him if he wears his ear defenders.

Over the last week of performance rehearsals his behaviour has spiralled, he's run out of the school hall, he's argued with teachers, he was accidently kicked by another child and responded by intentionally kicking them back.

I'm not excusing any of his behaviour and we have had several losses of screen time and conversations about having to do things in life that you don't want to do etc.

On Friday after a further incident re the play, he took the house keys locked his sister and dad in the house and ran away. He's never done this before. Police were called, we obviously searched for him and thankfully a school mom spotted him around 20 minutes later running up and down a road sobbing. Police will be completing a contact report and potentially a safeguarding referral although they're happy he's low risk given the circumstances.

I've been in to the school this morning to suggest that the play in my opinion , with the reaction he is giving, isn't the hill we should choose to die on. I've asked if there's an alternative role he can take similar to last year or if he can undertake the same work that is set for children that do not take part in the play due to religious reasons. The headteacher and senco's initial response is that this would "reward his poor behaviour"

I am desperate to find some coping mechanisms for him, and for the school to understand that, yes his behaviours been unacceptable, but that I need them to work with me to find a reasonable adjustment. Given he's already in a spiral I do not want to reach the point where hes refusing to attend school. We have no formal diagnosis or ECHP in place.
What would you ask of the school reasonably? What else can I do to help him? He's quite clearly anxious and scared.
I've emailed his camhs contact to fill them in and request a update.

I agree.

You don't seek the school's permission.

You inform them your DS will not be performing.

Stand your ground.

Your son will remember how you were a great mum and stood up for him.

Is high functioning still used in terms of ASD? I thought that was removed, DS2 is currently going through the process and that term is nowhere on the assessments and meetings we’ve had. I’m surprised CAMHs are involving themselves in any assessments too.

Regarding the play id just be informing the school that he isn’t taking part, if they’re unwilling to compromise I’d remove him from school for the days the play is due to happen.

I totally agree with all the other posters saying that your child is begging for his needs to be heard. The school is are totally wrong - and cruel - to be so insistent that he participate in the way they see fit. They are utterly obtuse to label his behaviour as simply "bad". You must tell them NO this is NOT happening. Your DS will be so pleased and relieved that you have taken his feelings on board and are fighting his corner.

My son has high functioning ASD and related issues, and has an EHCP with one-to-one support at all times in a mainstream school. He and I have been so lucky to have had the support of his schools all the way through. I was told by a SENCO years ago that neuro-diverse children who manage to achieve academically, and who do not disrupt the learning of others, are quite often ignored by the system, because the child has to manage the negative impacts of their condition, not the educational setting.

"Fortunately" (obvs not!) for my son, his behaviour was immensely disruptive for everybody until he got the support he needed, so they couldn't ignore it. He was assessed by CAMHS on several occasions due to self-harming behaviour, but it was not their job to diagnose him, that was done by a Consultant Paediatrician within the Paediatric Community Team.

His diagnosis report and follow-up reports - the most recent of which was written in May this year - all state High Functioning Autistic Spectrum Disorder. It seems the medical establishment is quite comfortable with the phrase.

My understanding is that high functioning and low functioning are used to discern between people with and without learning disabilities. I can see why some may find it pejorative and distressing. The words idiot, imbecile and moron were all used at some point in history to describe people with developmental disabilities. It is a sad indictment of human nature that all such terms inevitably seem to become weapons of abuse.

Argh! I mean the terms were used by the medical establishment and the professionals who worked with people with disabilities, not just by anyone!

Not very helpful but I used to be a TA and there were always DC not doing the school play for a variety of reasons. Sitting quietly in a classroom sounds exactly what he should be doing, at least he won't feel he's missing out. Just one thought, is this the right school for him?

I can feel your anguish and can emphasise from having some pretty traumatic experiences with my son. I never saw him a school play, nativity etc in mainstream for the same reasons. I would write (email/ letter) to the school head saying you do not want him to take part. You need to make sure you have evidence of all your requests and the responses from the school. The fact the SENCO thinks this is 'bad behaviour' is appalling.

Start the ball rolling for an EHCP/ diagnosis yourself. If you can afford it get a private diagnosis. Contact your LA Sendias service for help and guidance. You don't need a diagnosis for an EHCP it is based on need so that's somethibg you can do now. My son had an EHCP two years before a diagnosis.

Your poor son, people just don't get how difficult this is for them. Constantly trying to shove our lovely kids through their (Christmas) cookie cutter. You are so right it's not the hill to die on. You should hope for SS referral so they can speak to the school but also ensure your voice is heard and you get any help/ referrals they can support you with.

My son is now at an excellent specialist school, although the road to get to where I am has been long. The beauty is that there are no plays, no fancy dress days, every day is the same with a specific routine and everyday they wear uniform. Absolute bliss!

i would actually plan a nice day out with your DS on the day of the play.
Go have some hot chocolate and look at christmas lights, a trip to the cinema- let your son know you hear him.
He was trying to communicate and no one was listening.

Some professionals do still use it in an informal way when explaining it to parents. I was told my DS has 'what we used to call Aspergers or high functioning autism'. His diagnosis just says autism spectrum disorder.

And where we are, CAMHS carry out the ADOS assessments. There is no one pathway - it's down to individual health authorities.

Regardless of diagnosis this school is not meeting his needs.

You can do a parental request for an EHCNA , there is no need to wait for a diagnosis to do this. From what you say he needs to be assessed by an Occupational Therapist as well as an Educational Psychologist. The request goes into the LA not the school.

www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

In the meantime do not send him to do the play and do not punish him at home for difficulties he is experiencing due to sensory and other needs at school.

This is my child 7 years ago. Because we got him assessed and removed him from a harmful environment with an EHCP in place he has done well academically.

Thank you all for the replies.

I'm ashamed to say I didn't know that I could apply for a echp myself. I have previously looked at my LAs page but it only details routes for professionals to apply on a child's behalf. I will gather myself tomorrow and start this process.

In the meantime I've stated to put an email together for the HT and senco detailing what we've discussed today, the comment concerning poor behaviour, and the previous issues we've encounter asking them to advise if they will support a echp application but stating if they will not I will be requesting one myself.

Just to clarify this is a state school, I was agreeing the HT likes to treat the children like a 60s public school so sorry for any confusion.

In the meantime the HT has very briefly called to say DS has made a pre recorded clip today which will be used in the play, he will sit at in the back row of performers and wear his ear defenders but will not agree to singing dancing or talking. They state he seems happy with this. ?! Happy is probably a strong word.

I've spoken to him since he's been home to ask how he's feeling and he's happy with the recorded bit but is still unsure re the ear defenders marking him out as different. I've asked if as per a previous poster he'd be happier to have ones that fit in your ears and he's said he'd like to try those. Ultimately though I'm not sure what anyone gains from him sitting there clearly miserable not physically taking any active part. It seems to be a compromise for the sake of it? Almost a win for the school just to make him sit there? I'm not explaining myself very well, sorry, I'm a bit frazzled tbh.

Fuck that OP. I wouldn't do that compromise for the sake of the school.

This is compliance training. The school have found a compromise that satisfies them that the child is not defying or evading what they require him to do. They will be satisfied and content if he masks sufficiently to comply. What he experiences to provide this to them? That's concerning.

I really would suggest a major tummy bug that is going to hit suddenly and make it impossible for him to attend. What a shame. Never mind.

By next year you will have more evidence in hand.

I would tell them he isn't coming in.

And I agree that you should take him out for a treat of some kind.

I don't understand why they've made him do a pre recorded clip. That just seems to emphasise the fact he isn't taking part in the play in real time

I hope you get this sorted OP. FWIW I think the school have behaved really poorly

I would tell them it's not happening and he won't be going into school that day and they can fine you if they want to.

I'd also start asking about assessments for DX and armed with that, ask the la for a meeting to discuss an ehcp.

Then I'd start looking round for a school where the staff aren't as thick as pigshit and understand the difference between autism and poor behaviour. The school is harming him and he needs to be out of that environment.

The Senco and Head should be ashamed of themselves. If they cannot see the difficulties your son is experiencing what hope is there?
I feel so angry for your poor son, this is cruelty. Adopt another religion for the next few weeks, if that’s the only reason to stay out of the play they’ll accept.
Id also be contacting Ofsted with a complaint ( but that’s me)

Yeah, that’s shit. The pre-record is nice, but making him still sit there is compliance for the sake of it.

Definitely go back and say thanks for finding a solution to taking part, DS is happy to have pre-recorded his part but is still not entirely comfortable with the noise and being on stage with ear defenders. He may have agreed whilst in school but at home he is definitely not keen on this. So, on balance, as this was such a serious and shocking incident that he felt it was a big enough deal to run away, it would be best if you’d allow him to work with the other children who aren’t taking part at all and not force him into a situation that is triggering anxiety.

And don’t take no for an answer.

I think this post probably sums up your situation:

You think your son needs extra support.
The school do not think he needs extra support.

You aren't going to get past this, I suspect, because the Head is already digging in heels and doesn't understand the problem.

Even if you do get a diagnosis they are liable to be obstructive and difficult. Because you've undermined their 'professional opinion' and gone over their head.

In terms of 'rewarding bad behaviour', there is a problem if they are failing to recognise he needs help.

At this point, I think I would start documenting this in writing and then be 'unavailable' or insist on a written formal response. Frame it saying, "what support are you going to put in place to assist my son who is so distressed he is acting in a way that is putting his safety at risk?"

If they then fail to do anything, or put in writing that they don't think they need to support him they've got a problem if there is another incident similar to the one with the police.

Your son is 9 years old. He may behave badly which they wish to stop but if it puts himself or others at risk it becomes a safeguarding issue which the school have a duty of care over.

I would also say that if they fail to provide support, you intend to keep him out of school on the day of the performance as you don't think its in his best interests. If they wish to take this further for an unauthorised absence, you are happy to take it further.

Basically, protect your own arse and your son and set the school up to fail. And be prepared to consider looking for an alternative school because there is a strong chance this is going to head south quickly with a breakdown in your relationship with the school over this.

Sorry for not replying sooner OP.
Firstly, I agree that whilst high functioning is technically an outmoded term it is still one that is used by some sencos and parents. The fact is that autistic children are all on a spectrum with different needs and qualities but 'high functioning' serves as a useful shorthand for children who, amongst other things, often know how to mask well and do a good job of appearing to be neurotypical to the outsider, so ignore the naysayers.

The reason I asked if school had been involved in referrals was because I suspected they had not been, as you have since confirmed.

Yes you can apply for an EHCP but it requires a huge amount of work and evidence of the need for one. You will need a full assessment of all of his needs and the more high functioning he is, the harder you will have to work at getting this. ASD children with an EHCP will usually have a diagnosis through the paediatric multi-disciplinary team in the NHS and assessments from Ed psych, speech and language therapist, occ therapy, to name the basics.

You really do need to get the school on side and I would start by asking for an EP (Ed psych) referral for your child. By the sounds of this school, they may push back against this so have your evidence ready. I don't mean evidence that other professionals think he may be ASD. I mean evidence of the ways in which he struggles, how that manifest in schools and how that causes him difficulties.

Eg what are his sensory needs? You've mentioned noise and proximity to others. So state that proximity to others causes high levels of anxiety and, in a school setting, that causes problems 1) with the need to be in a closed space/room with so many others and 2) that this sensitivity stands out to others and has led to other children goading him for a reaction.

Another example- it is common for ASD children to have some degree of emotional dysregulation and that needs to be recognised by the school and he needs strategies to cope with when he is upset or angered, rather than purely punished.

I could go on and on and on but you need to couch your terms in sen-appropriate language to fight against their opinion that he is just naughty and ask what THEY are doing to support his needs in each area. Make them squirm a little so they can't really argue against a referral to the EP. I can't emphasise enough how important that is.

There are organisations which support parents who are struggling with getting the right support in schools (family action, Sendiass) and frankly, if you really can't get the school on board, I'd be looking at changing schools.

With regard to the play, I would ask for a meeting and state that their unwillingness to make reasonable adjustments for his SEN is creating a serious safeguarding danger as he is running away and threatening school refusal and that you require them to allow him to not be on the stage at all. If they refuse, again I would emphasis that they are risking his mental health, education and physical safety.

School are behaving appallingly. They should be making adjustments to meet needs regardless of diagnosis, given it is in process and seems likely. Pull him from the play and escalate with the governors. It’s just cruel what they’re doing. They need training on Autism urgently, he won’t be the only poor kid being affected by their incompetence.

@Eyerollforwardroll yes @SRK16 makes a good point. Escalate to governors. There will be a governor with specific responsibility for Sen. Include them and chair of governors but be clever about this. Ask for the schools complaints policy (it may be on their website) and follow it to the letter or they will just throw out the complaint without investigating.