Autistic son and help keeps getting denied. How do I get through this?

[Mysteriousgirl2]

My DS is 5. He’s in Year 1.

Since his pre-school year I have noticed that he seems very different from the other children. He cannot regulate his emotions, hates being in new places and feels so much anger and frustration towards the world. He’s such a complex little boy.

In his first year of school (still aged 4, he’s summer born), the HT told me that he might have to be permanently excluded and this was at the end of his first week of education. This was due to his anger. As a secondary teacher I was shocked and appalled.

I have been desperately trying to get him support. I was sent on a parenting course. It didn’t work. I was told that the school would refer him under the umbrella pathway, but that referral was turned down due to ‘lack of evidence’.

The school told me that they cannot refer him for another two terms now. They told me to go directly to the GP. The GP told me that they cannot refer him to the umbrella pathway and to go back to the school to ask again.

Does anyone have any advice please? What do I do now?

What was the process the school did to do the referral? Did you get a full written response as to why the Umbrella Pathway was refused and what the next steps could be?

Presumably the two terms thing is because the response from the Umbrella Pathway team was that the school hasn't been trying appropriate strategies for long enough? What adjustments have the school been making so far?

He already has a diagnosis? You're waiting for an EHCP assessment?

An EHCP sadly isn't likely to change what sounds like a very poor response from school. Do you think it's the right place even if they manage to get significant resources in an EHCP? (Pretty unlikely/v difficult outcome atm.)

Sorry - he does not have an EHCP or any formal diagnosis

Do you know who carries out the assessments for autism in your area OP?

Is the umbrella pathway the route to diagnosis in your area? If so, GP should be able to refer, they just prefer not to (understandably, plenty else to do). Go back to them and explain that school referral has been denied, and ask that they try. The difficulty accessing diagnosis for children is appalling.

Have you requested an EHCNA? This helps to secure provision within school, according to his needs. It also means he would be assessed by an educational psychologist and other professionals, which might help everyone to understand his needs better.

So the 'umbrella pathway' is for autism diagnosis? And the two terms delay is for an EHCP? Have school referred him for autism assessment and been refused? That's quite unusual. I would definitely try the GP if so.

Not familiar with the term 'Umbrella Pathway' - you will come to know that everything is different in every HA and everything is different in each LA.

If the school is / has been talking about expulsion, they should have written plans in place as to what support he has been / is being offered. Have they shared them with you ?
Have you had any meetings with the SENCo ?
If not, that is your first step. Ask them what the issues are, what the trigger points are, and what strategies they are using to support him.

The medical diagnosis (if he gets one) come via the Health Authority, but it is different in each area. Where I work, either GP / HV / Nursery / School can refer to a Paediatrician (who works at a Child Development Centre). I've read on here that in other areas there are fewer people that are able to make referrals. I have read on here that in some areas they actually have enough staff at their CAMHS to do the Assessments for Autism and that is the route hose children go down. So it will depend on your area, and I guess this Umbrella Pathway' is something to do with that.

But - and if you are a Secondary Teacher you will know this, as it is the same Code of Practice for anyone aged 0 - 25 - a child doesn't have to have a diagnosis of anything for the school to do their part. A school has to make 'reasonable adjustments' to meet the child's needs. This is where you need to start, without waiting for any formal medical diagnosis.

you need a Dx and to apply for an EHCP

Apply for an EHCP use Ipsea they have a model letter to use personally if I was you I'd send the form off today as that way your more in control. Everything is about time so the quicker you send it off the quicker it should get done.

If you have cash I'd go private for diagnosis as nhs takes years

These 2 charities have amazing help - ipsea / sos sen lots of help on there / free helplines etc

Good luck

I assume this was a typo! You definitely don't need a diagnosis for an EHCP!

How is he with the work? Could you have dropped him back a year?

My dd got referred by gp.
I then did a huge log of both general issues and a spreadsheet of incidents.

You may find he becomes easier through y1 and into y2 as more structured.
Does he also struggle at clubs like swimming or football etc?

Provision is needs-led and he doesn’t need a dx to get support. Ask school to make a referral for support from whatever they call SEND and inclusion services in your authority. If they’re turned down from there it’ll be because they’re not doing what they’re supposed to be doing in school.

I hope that you get some good advice on how to get the support that you think he needs at school.
In the mean time, if you have the chance and interest take a look at Georgia Ede and Chris Palmer on YouTube. Both argue the link between diet and behaviour in terms of brain health. Diet can be a factor in mental health and the development of a healthy brain.
Good luck.

I agree with a PP that suggested you ask the school to get someone in from SEND - this is what my ds's school did and the lady was very experienced and immediately thought it might be ASD and wrote a couple of pages detailing her observations. This really helped in getting his diagnosis. Also write a list of absolutely everything that could be an indication that you've noticed yourself ever since he was tiny.

Sending a school teacher on a parenting course sounds absurd. It's shocking the hoops they will make people jump through to get an assessment for their child.

In most areas, "get someone in from SEND" is not a thing that can happen. Similar to the person who said that asking for a referral from "SEND and inclusion services." Some areas of the country have shockingly little support for schools supporting send pupils.

Sometimes, when school says they can't get external support, they are correct.

In my school, the only way to get an Ed psych to see a child is to apply for an EHCNA.

Private assessment.

But it sounds like the school have well and truly washed their hands TBH.

I work for SEND and Inclusion in one the teams, I know there are very few local authorities in England that have no SEND service at all in some format. I know lots of schools have to pay for these services, but that doesn’t mean they shouldn’t refer, they have a duty to meet need and secure appropriate assessment.

I work for a local authority school, and we pay for every service available in our local authority, at the maximum service level.

Every service tells us to prioritize pupils and that they can't support all of those that need help. We put in referrals as children beed them and parents want them, but they are just returned and we are told "school should consider Ed psych assessment."

Go privately if you can afford it. We did a GP assessment last week, had our initial assessment this week to determine likely pathway and then in depth assessment booked for feb. We'd still be waiting for GP if on NHS

Go private, six weeks for us between contacting the clinic to having the report sent to me. It's expensive but worth every penny in the validation it brought and saving DDs spiraling MH - don't actually expect any real support following NHS or private diagnosis though.

I hope this works out for you and your ds.
We already had a diagnosis and had a very similar response (to very different behaviour though) from our local primary. It was very much that we can’t help/do anything/ you need to apply for EHCP which will take ages and we have no extra resource/there are others with greater needs etc etc. This might be completely true but we had a distressed, regressing child at the time and needed something quickly.
We ended up moving ds to a private school as couldn’t find another local state school that could help. Hope you can get it sorted out without a move but do consider anll other local schools if you can’t.