School denying diagnosed SEN. Where to turn?

[CanYouSeeWhatISee]

DS10 (11 in August and moving to high school in September) has recently been diagnosed with Autism. His 3 year old sibling also has an autism diagnosis but his is much more pronounced.

DS10’s school have repeatedly told me they don’t believe he is autistic and they would never support the diagnosis because he is sociable; their responses throughout the assessment support their view that he is not autistic.

DS is a lovely boy and he is very well behaved but his sensory needs are impacting our whole family and this was the reason for the referral for assessment.

He is constantly on the move whether it’s running , jumping, spinning , shrieking, hitting, crashing in to things etc . It makes doing any very small task exhausting. The whole experience every day is exhausting. He can sometimes be calm if he has a sensory toy in hand but he still shrieks and is unpredictable. He also does dangerous things in order to get some sensory feedback.

The constant movement and noise also upsets his little brother who can not stand it so it adds to the battles.

DS10 was assessed by an educational psychologist who could see how anxious he is in school and explained to his teachers that he is trying hard to mask his need to seek feedback.

DS10 was then referred for a sensory assessment and both myself and his school were sent forms. I’ve received a copy of the forms in the post yesterday and unsurprisingly the school’s responses are opposite to mine and DH’s. DS10 has now been discharged with no further action needed.

We are frustrated to say the least. I understand school can only write what they see in the classroom but I feel they think I’m lying or exaggerating.

WIBU to ask for DS10 to be seen again?

@Itsanotherhreatday that’s not true in our area.

@Wanderingfree32 What is an autism advisory teacher and how would I find one?

Your DC sounds like mine. He really struggles socially; desperate to make friends but has no clue what to do when faced with unfamiliar children.

I can provide some light at the end of the tunnel.

OK, he's struggling now. But he will be in secondary soon.

Secondary are going to see it more clearly. There is such a change in expectations and routine; he will also be beginning there with the diagnosis in place.

It took til my eldest began secondary for his autism and adhd to be noticed - I knew, I'd lived with him 11 years! But primary had denied there were issues despite him having speech delay, double incontinence, no attention span for classes or for listening, stimming, no social skills and a lot of food issues.

I pulled my youngest from primary to home ed til secondary, referring her for an assessment during that period. Best thing j ever did.

Yes - it does occur that teachers and schools fill in forms, etc with info that vastly differs from the info provided from all the other sources.

Just remember, the info any school provides is just a small part in the overall scheme of things; schools don't play as big a part as they might think they do.

You, the parent, are the one that makes the real difference by negotiating your dc through the 'maze'.

@CanYouSeeWhatISee we used a company called ACE SEN who were based in Essex. It was set up by a lady called Nicola who used to work as an LA Autism Advisory teacher. She then set up on her own.

They are very reasonably priced (much cheaper than all of the other private reports we got) and can do remote assessments if you are too far away but I know that they do travel hundreds of miles to support people. I think that Nicola's assessment of our kids really helped us in getting the EHCPs. She is willing to attend tribunal too.

We don't personally know her, we just happened to come across her company and we're very grateful for the help that she gave us. She saw exactly what we see and we didn't give her a heads up either!

The autism advisory teacher will talk to your child about school and can also go into school to observe them in class. They make recommendations on what can be done in class to support the child.

And you can use the report recommendations to go in the EHCP.

Based on this then I need one for my child. Never stops moving. Ever.

If EHCPs were granted on home alone then I would suspect about 80% of children in schools would have one which is untenable.

If he copes at school - I can't understand why you would be seeking one for him. School are managing his needs well. That's great news.

All children 'mask' in school. That's pretty normal conformity right there. Reasonable adjustments work for these children.

Sounds like you need support at home. You - yourself may need the support OP.

I think, in your position, I would write off primary school as he’s nearly finished anyway but make absolutely sure that you have confidence in the SENCO at his High school. Arrange to meet them in advance, take all documentation and get the right school support in place.

It’s ridiculous to imagine autistic people can’t be outgoing. Shocking that school feel they can make decisions based on outdated cliches.

If he copes at school - I can't understand why you would be seeking one for him. School are managing his needs well.

OP’s DS clearly isn’t coping in school, and school clearly aren’t managing his needs well.

It is possible to get an EHCP for a child who masks at school.

No, not all pupils mask like some autistic pupils do.

OP you could try the occupational therapist route. A full assessment in school and in the home by an OT will provide the in situ evidence you need.

In my long and miserable experience navigating through our shit SEND system it all boils down to pieces of paper from professionals.
I have boxes and boxes of evidence and reports for my son which I dump on various desks if they ever question what I'm saying.

For us, the turning point was getting the attention of someone from the Specialist Teaching Advisory Team at the LA. I had tried referring through proper channels, but got hit with 'they only deal with children with EHCPs'. My point was that without her expertise, I wouldn't have the evidence that DD2 needed an EHCP (massive masker at school). I directly emailed her, explaining the situation. She couldn't help because there was no capacity in her team, but when a private SALT commissioned by the LA did a terrible job of assessment, I copied her in on my complaint and she read the report and intervened. She's been seeing DD2 ever since and frequently advocates for her when issues arise with the LA or school.

@winkybean I would agree with you if I didn’t know my son. He is not coping in school and this was evidenced by other professionals who observed him in school. Masking for an NT child trying to fit in is not the same as masking for an ND child who is trying to mask significant and damaging anxieties.

@ThomasWasTortured I’ve been reading the SEN boards on here and you seem to know a lot about EHCPS. Do you know if EHCPS are all about funding or could I argue an EHCP is necessary because without it, he would not get the support he needs?

I remember from the needs assessment in year 4 that breaks with a qualified teacher were mentioned for 30 minutes per day broken down in to ten minute slots (so 3x per day). Whilst this could probably be done within the schools budget , it won’t (and does not) happen because nobody has the time to do it!

There’s half a term left in primary school, so I agree that the best plan would be to get the secondary school on board as soon as possible, bearing in mind that OP’s son will come across many more teachers and children than he has up to now.

Speak to the SENCo if you can, or email if you can’t. Make them aware before induction day and document what he needs to manage as well as he can in school. If you can get their support to appeal the needs assessment, it will add to your evidence of need.

With DD2, I wrote that although the SEN COP suggests that schools should have done the assess-plan-do-review cycle and have evidence of the process, the fact that they hadn't was evidence in itself that they weren't meeting DD2's needs and couldn't meet them without a Plan, and that DD2 shouldn't be penalised by their failure to follow process.

Any school that follows that policy is very, very stupid. There's nothing magic about being an NHS or school psychologist that makes you automatically better than other qualified psychologists.

Again, a daft policy. Are NHS psychologists doing it for the pure love of psychology? Does anyone discount a lawyer's or accountant's or architect's advice because they're being paid?

No.

Masking in autistic children is entirely different. To compare it is very offensive, its the equivelent of saying "all children's hearts race" when you're talking about someone with a heart condition.

This is brilliant!

@Lougle I will take that point on board. It is extremely frustrating as DS is making academic progress but has made no progress in social skills or SEMH. He has been attending the boys youth group for 18 months and has made no friendships. He can’t attend their overnight camps because he’s too anxious. However, because he has friends in school , he’s fine 🙄.

They sound shit. Makes me grateful for my school's support. My children get sensory sessions, movement breaks, allowed to wear ear defenders, support with mental health, small group work etc and at school they are mostly "fine". How dare they deny your child's diagnosis!

Definitely get a meeting in now with the new secondary school SENCO. Take your reports and ask them what they might be able to implement from the recommendations. Also ask them about their knowledge of masking.

This isn’t true.

You are paying to jump the queue and be seen quicker not paying for a diagnosis .
As long as the assessment is done according to NICE guidelines then it’s as valid as an nhs diagnosis

Don’t focus on funding, focus on the provision being detailed, specified and quantified in F as then it must be provided and can be enforced if it isn’t.

From your posts it is clear DS needs provision beyond what can typically be provided by a MS at SEN Support level. For example, he needs ongoing direct OT including sensory integration OT and SALT.

However even if that wasn’t the case, case law demonstrates LAs should consider whether without an EHCP “can the child’s special educational needs be met through provision from the resources normally available to a mainstream school and will they actually be met?” And it is possible to secure an EHCNA with a view to securing an enforceable EHCP when the school could do more but won’t.

Focus initially on getting another EHCNA. The only lawful threshold is a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Anything else such as 2+ assess/plan/do/review cycles, spent £6k, 2+ years behind… is unlawful.

No.

Masking in autistic children is entirely different. To compare it is very offensive.

Compared to who? Other children with SENd? 'Normal' children? What does this even look like anymore?

Serious and genuine question.

If he copes at school - I can't understand why you would be seeking one for him. School are managing his needs well. That's great news.

That's way too simplistic. All too often the child who copes in school does so at enormous cost to their mental health. Just think about something that stresses you out - for instance, being in an incredibly noisy environment and not understanding what is going on - and think about that being your experience for several hours every day. Could you cope?

Children with autism tend to have communication difficulties which means they don't understand people's expressions and they don't understand inference, nuance, jokes, irony etc and need time to process what is said to them, so as they progress through school are going through the day in a fog of incomprehension. They also tend to have sensory difficulties which means that many sensations are really uncomfortable for them, they are very sensitive to noise so that it is painful and they are easily distracted by the slightest noise, just sitting still for long periods of time makes them almost unbearably uncomfortable. A child with those problems might manage to suppress them enough to cope during the school day, but do you imagine their learning is optimum? Often by the end of the day they are extremely stressed and like a coiled spring, hence the massive meltdowns parents often report as soon as they are out of the school gates and with a safe person. To suggest that all of that is "great news" and means the child needs no help in school is just ridiculous. Those are the children who end up being too anxious to attend school at all. Is that great news?