Getting a formal diagnosis for 6 year old

[TaupePanda]

My almost 6 year old son is a wonderful kid with a heart of gold. But there is no denying that he is somewhat 'quirky' and the reality is we feelwe should start the process of seeking a formal autism diagnosis.
This is not without consideration; we've been working the GP, HV and various NHS & private therapists since he was 2, addressing various development delays and challenges.
He's made huge progress in some areas, such as his speech and we are so proud of him. But its heartbreaking to see how he struggles around his peers - he wants friends but he just doesn't understand how to imteract with people - he seems so confused. His defence mechanism seems to be to allow everyone to take the lead over him or he melts down and has the most violent tantrums. We are as understanding as we can be but school take a dim view and he does it wherever it creeps up - could be a store, on the bus etc... that's very difficult to deal with, especially if I also have my younger son.
He also has interoception issues, obsessive behaviours and a total lack of working memory - he's behind academically which seems to be down to just completely forgetting anything he's just learned 5 minutes ago. It genuinely appears to just leave his head.
We live in a city, he goes to a big primary school and resources are stretched. To get extra help, he needs to 'have a problem'.
At pre-school he was receiving funding for 121 support and I wish we had broached the subject with the portage team then. But, as we are in school I was hoping to get some advice on what we do now? I'm drafting an email to the sendco but should I bring anyone else in on this? Would a note from his speech therapist help? We've just seen the GP again for his dribbling - would it be worth seeing her again about this.
Any help would be great. We just want to make sure my son gets some understanding and support. Any help would be appreciated. Thanks

First step would be to ask the GP for a referral for an autism diagnosis and if the wait list is too long (and you can afford it) then you could go down the private route.

For school, it would be worth raising the subject of an EHCP with them, which would quantify specific provision which would then need to be provided. Be prepared to be fobbed off. But you can apply for an EHC needs assessment yourself.

Definitely see the GP about a referral. And the speech and language therapist would have a good idea as to whether an autism assessment was worth pursuing (it sounds as though it would be).

Has he ever seen an occupational therapist?

He'd probably struggle less in a quieter home in the countryside. Noise pollution is horrific for autistic people.

Hi there, my daughter’s autistic too. I would say the sooner you start down the road, the better. Education isn’t going to get any less demanding! And it sounds like the government are going to overhaul the system in a way which will give parents fewer rights to expensive treatment.

Don’t beat about the bush with the SENCO, say you’d like to start the EHCP process asap. If they won’t refer, you can do it yourself. Re the dribbling - hopefully the GP will refer you to an occupational therapist. In the meantime, do straws help?

Have a look at Right to Choose to make the wait time a bit shorter. You can choose a provider and ask your GP to refer you to them. Good luck.

We've been told by a couple of other parents that a private diagnosis isn't taken as seriously as an NHS one, but we'll definitely go down that path if we have to. Which I think we might, as everyone agrees that he is a bit different but absolutely no one will even give a thought on what they think it is. The only person who has ever said they think its autism is one of the speech therapists we saw, who suggested we see a play therapist too, as he doesn't have very good two-way communications skills - tends to just talk at you

He has seen an OT but that was for a physical thing - he can't jump, or get up from off his back. They thought perhaps core dysfunction but physio doesn't agree. It feels like we're just in a loop of everyone agreeing that there are various unusual things going on but no one will set us on a path to a diagnosis that will get us consistent support

Thanks. I literally only heard of Right to Choose this morning while researching. Will look into it

Well, that sounds familiar. We've had to pay for almost every therapy we've had. When we finally saw an NHS speech therapist he was 4 and still barely said anything and they were horrified that we'd had to fight just to get the referral despite him clearly being really behind. We kept being told that it might just come good and all children develop at different rates. And of course, everyone acted like I was a crazy helicopter parent 🙄

Depends on where you live.

In my county and NHS GP won't touch anything to do with getting a diagnosis for a child with autism.

There are two routes - either you go down the private diagnosis route - this has the complication of whether that is officially recognised by the school / the NHS. (In most cases it would be, but not always and that can add complications but it's often quicker) or you go through the school referral system.

Basically your school has to refer you on through the NHS service - this is because they have a period of 'observation' in school.

However the next county over do not do any diagnosing / referral system at all. They purely treat kids on the basis of whether they think they are neuro-diverse or not. This has its positives and negatives - it means that kids with the biggest difficulties immediately get support they need.

But it comes down to funding. The schools have to think it's worth applying for funding and that depends on their criteria for that.

In my county it's more difficult to get funding without a diagnosis. But if you have a EHCP they still can get some. Next county over works differently (not entirely sure how it works).

So a) you need to find out how the system works where you live rather than listen to a pile of irrelevant advice on MN from people who live in areas with a completely different system b) look into getting an EHCP.

Other things to keep in mind - unless there is a significant problem (eg mutism) DS's school, usually won't refer until a minimum of age 6. And the process seems to be around 18 months - 2 years long here. DS's don't tend to suggest a child is neuro-diverse to parents - they hint at it until you take the bait and the parents takes the initiative or it gets to a point where the child is referred all over the show for significant disruption or behavioural issues affecting the other kids. In other words it's down to parents to initiate conversations with the school asking the question about this rather than waiting for the school to say something. It's arse about face and to do with the fact the local system is free for one child per class per year and then costs the school for each referral. So they want to prioritise and delay...

Either way you need to arrange a meeting with the teacher / senco and be direct!

If you use a Right to Choose provider, the school is not involved in the referral process, although they will be asked to submit information if the referral is accepted. You need to make the referral via your GP. Don't let them fob you off. It is a legal right (across England) to be referred to one of these providers regardless of where you live. Contact the provider directly for information about the process.

Have you ever been referred to a geneticist? It sounds like there’s more going on than ‘just’ autism to me.

Does the school have access to an educational Psychologist? This could be a way of getting a good understanding of the type of additional support that would benefit him, without the need for a diagnosis. You could get the ball rolling with the GP to pursue a diagnosis anyway, but an Ed Psych can support change more swiftly. Best of luck!

They have big signs in the GP and on the CAHMS website locally saying you must go through the school process or via social services as the local authority.

If you ignore this locally, you find yourself getting not very far very quickly, despite rights - they just signpost you back to the route they want because our trust has a beaucratic and computer says no mentality to anything out of the ordinary.

Not true, legally everyone has the right to use a Right to Choose provider (in England). From the National Autistic Society:

"In England, patients have a legal Right to Choose who provides their healthcare, including who carries out an autism assessment. GPs should offer you the option to choose a service to carry out the assessment.
To be eligible for the 'Right to Choose’, the person should:

• be registered with a GP in England
• must not be a prisoner
• must not be detained under the Mental Health Act
• must not be a serving member of the armed forces
• must not be needing a test urgently or have been admitted to hospital.

The service you request must be providing NHS services in England. GPs should always offer the 'Right to Choose' before they refer to a service. This includes providing information about the services available and helping you decide which service is most suitable. Some people prefer the 'Right to Choose' as they may have to wait a shorter time to be assessed, or the provider's location may be more convenient than other alternatives."

Some GP practices still seem unaware of these rights. I had to speak to the practice manager at first. The providers are helpful about what to do if the GP tries to put you off.

His inability to jump could be related to dyspraxia which is common with autism. Everything you’ve said so far sounds like autism.

Yes, this is what our experience was too. Until they get to about 8, after which the implication is you should have been more assertive and should have done more sooner…

There are two separate issues.

1. Support in school. This doesn’t require a diagnosis. With a couple of exceptions, such as some autism special schools and the specialist teaching team in some LAs, support in schools is based on needs, not diagnosis. Request a meeting with the SENCO. The school must make their best endeavours to meet DS’s SEN and they must make reasonable adjustments. Alongside this, request an EHCNA yourself. It is poor the nursery didn’t do this if DS needed 1:1. On their website, IPSEA has a model letter you can use to request an EHCNA.
2. Diagnosis - if you are referred to your local provider, the process and who you are referred to depends on where you live. Although even in areas where schools normally refer, there will be other ways of being referred if you push. Or you could use RTC if in England.

We've actually been down the dyspraxia path already but it was decided that he didn't have it, because he does actually have excellent balance and is a natural at riding a bike. I don't think that means he doesn't have it but he doesn't meet the incredibly arbitrary benchmarks that were used to assess him. But, who knows for the future

No - we've been working with the sendco since we joined the school in reception and they're always lamenting that they don't have funding for it anymore. It's actually an outstanding school and best in the area for sen but its still pretty lacking, as so many are after years of squeezed budgets

We have done this actually, quite a while ago as neurodivergence is very prevalent in my family. Aside from being very slightly b12 deficient absolutely nothing else seemed to be wrong. We've been looking at private tests for hair, stool and urine but in amongst everything we have to choose what we focus on and it's slipped down the list