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Original poster

Is it easy to get a GP to refer a child for autism assessment?

71 replies

SpinningTops · 19/12/2023 14:20

I have an appointment about DS but trying to prepare for whether I need to fight them to refer or whether they will happily refer.

He started school this year and his anxiety is getting worse and is now getting very fixed in his routines.

School say he's not struggling at all and other than using a visual timetable with him they have no concerns.

Will the GP want to see him personally?

OP posts:
MyBigFatGreekSalad · 19/12/2023 14:26

As far as I'm aware it's a very long process.

I haven't had first hand experience but I have a mum friend who tried to go the nhs route but didn't get very far, she ended up going private which sped things along. I know this isn't financially doable for everyone but could that be an option?

Hotpinkangel19 · 19/12/2023 14:27

Unfortunately unless going private in most areas they will want the school to refer and GP's aren't allowed.

Sirzy · 19/12/2023 14:28

I would go in with your list of concerns written down so you can give as much detail as possible. The key at this stage will be whoever is doing the referral doing it in enough detail that it is accepted

Interested in this thread?

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qpdlurgak · 19/12/2023 14:29

We have gone via our school who then go through the council I think it is (there was an NHS logo on the letter as well) this was a year ago though and still not heard anything! Not been to a GP.

Butfirstcoffee3 · 19/12/2023 14:34

If you mean just started primary school, the process in my area is slightly better in this age group (under 7 or under 8 maybe?) It can sometimes be difficult to progress without school or other professional supporting the referral though, so GP might be a good starting point if school aren’t witnessing the behaviours that you’re worried about. School can only really document what they see on their forms, it doesn’t mean it’s not happening though!

yarnwitch · 19/12/2023 14:35

You would probably do better asking the GP for a paediatrician referral first. I'm not sure if a GP can refer for an autism assessment but a paediatrician can. It's a very long process and waiting lists are huge at the moment, you're looking at years.
CAMHS can help with child mental health but their acceptance criteria is very high and there are usually long waits.
You will need the school on board with your concerns really as they will be asked to help build a picture as part of any assessment. They should be helping with the anxiety anyway, not just denying he's struggling. Is there a pastoral person at the school you can speak to? I would arrange a meeting in school to discuss your concerns.
Have a look on your local council website too as there are usually different support and advice networks, but they vary from area to area.

SockQueen · 19/12/2023 14:36

Different areas have different referral pathways - it may be worth looking up what the protocol is in your area, so you can be prepared.

My GP was very happy to refer after just a telephone appointment, without seeing my DS, and I sent in a letter detailing all of our concerns and a copy of his reports from nursery (who had originally raised concerns, though he was in Reception by the time I spoke to the GP). Our community paediatric service then sent some further assessment forms to his school before they accepted the referral. I never felt like I had to fight much, but there was a lot of waiting involved - spoke to the GP in early 2022, seen by comm paeds November 2022, ADOS assessment July 2023 and official diagnosis shortly after that. Though this is sadly probably "good" compared with some areas!

Original poster
SpinningTops · 19/12/2023 14:51

Maybe I need to arrange an official meeting with the SENCO. Sounds like I won't get anywhere without school on board.

It's tricky as I think they might just think I'm a bit neurotic.

But I find it hard to believe that he comes out of a day of 'normality' at school to be rooted to the spot in a panic because I suggest we walk out of school by a different route. I almost want them to follow behind us one day ...

OP posts:
Sirzy · 19/12/2023 14:55

He may well be masking in school so they don’t see what you do. You’re his safe person so he can be himself. Look up the coke bottle effect.

if you can safely record things then that can be useful for others to see what is happening

njg616 · 19/12/2023 15:14

You can get school or any other health professional to make a referral as well

JustKeepSwimmingAlong · 19/12/2023 15:27

I asked my gp who referred me to a paediatrician who referred. It took a very very long time (2-3 years) but we got there in the end :)

BladeOfMiquella · 19/12/2023 15:35

No one can really give you answer. With DS1 it was easy, just went to GP explained my concerns. They referred him (it was quite obvious).

With DS3, it wasn’t until we had been on a parenting course and had 6 weeks of an early help support worker coming the house that we were able to get the referral which was backed by the early help worker.

I was very frustrated at the hoops we had to jump through especially as I already had one child with a diagnosis.

RedToothBrush · 19/12/2023 16:07

Our local NHS trust won't do this type of referral. They have to go through school because they require an assessment period in school to monitor behaviour. The key point is often struggling in more than one setting (home and somewhere else).

But it really does depend on your local area.

MojoDojoCasaHouse · 19/12/2023 16:23

I went to GP without DD with a list of concerns. I thought it was ADHD and that is what the GP suggested. DD was 6 at the time and struggling terribly at school, they must’ve have known as communication and interaction team plus EP were already involved. School never suggested a referral though, they waited for the penny to drop for me. I felt so stupid but DD was much better at home and her triggers were mainly at school.

The GP didn’t hesitate to refer but I know other people locally (different surgeries) fought for years so there seems to be an element of luck talking to someone helpful who will listen.

MojoDojoCasaHouse · 19/12/2023 16:25

DD waited 20 months for a diagnosis of ASD (would have been Asperger’s) with sensory processing disorder.

Ted27 · 19/12/2023 16:40

@SpinningTops

My son was always a model pupil in school. His behaviours at home were very different.
Think of your child as a bottle of pop. All day long he is busy conforming, it's hard work, very tiring, they are bring shaken up.
Then he leaves school, and the bottle top is off - what happens to a shaken bottle of pop when you take the top off? It fizzes or explodes.
Of course I can't say whether or not your child has ASD, but there are perfectly good reasons why he might be behaving as he does and why school might not have concerns

AlanJohnsonsBeemer · 19/12/2023 16:49

It depends on the area you live in I think, my friends lives 15 miles away and the pathway to diagnosis for her son was via the GP. We spoke to our GP who said definitely get her assessed, as the behaviour we see at home fits a lot of criteria, but it can’t come from him, it must be through school…where DD masks perfectly.

NerdyBird · 19/12/2023 16:53

In our area we have been informed that schools cannot make referrals as the place they make the referrals to is not accepting any for the foreseeable future. Not sure if GPs refer to same place. If I were you I'd research all options including private. It might be quicker to save for private.

Didiplanthis · 19/12/2023 16:54

The process varies vastly area to area... don't set yourself up for a fight - if the gp says they can't refer they are not 'fobbing you off' ... it is likely that in your area the assessment team won't accept GP referrals and it has to come from school. You may hear about right to choose though this is more for ADHD whereby you can be referred to a private provider on the NHS but many of these providers are not accepting right to choose referrals as they were overwhelmed. Without school on board it can be very difficult to get through the assessment teams screening process even after referral.

I would think a phone call with GP to find out how it works in your area and if they CAN refer is a good start, if they can ask what information they will need. If your child has SEN you will have many many fights ahead of you, this is not one to start with ( unless your GP can refer but is being an obstructive git ... in which case its reasonable !!) .

I would then arrange a formal meeting with your SENCO, with a diary of all the little things as well as the big things that make life so bloody hard with an ASD child. Document everything, put everything in writing, email what you have discussed/agreed in meetings afterwards. If its not in writing you will find it didnt happen /wasn't said... keep ALL the emails as evidence. You never know when you might need them. I recently submitted all of mine for EHCP tribunal as proof I had been asking for help for years. I never thought would need a EHCP until suddenly years later we did !! Good luck !

RedToothBrush · 19/12/2023 17:15

Echoing what AlanJohnsonsBeemer and NerdyBird say.

In our area it's go through the school can't go through the GP. The school will only do so many referrals per year because that's all they have funding so. So if they have more kids who they think need a referral they won't do it - because they have to pay for each one over the number of referrals they are given funding for. So you get a bunch of kids waiting until the next school budget to see if they get the next year's lottery ticket for a referral. If you go private it's really hard to get a private diagnosis recognised by the GP so you end up in a weirdo limbo.

The neighbouring council (where a close friend is a teacher), they won't do referrals at all. They will generally treat all kids who they believe to be ADHD or autistic accordingly without a referral if it's for minor adjustments or the child is massively disruptive. Otherwise there's no pathway except going private. Which are recognised.

And my understanding is it's different between every council authority.

Which quite frankly I think is scandalous in its own right.

Peekingovertheparapet · 19/12/2023 17:22

My child was diagnosed when he was in year 1, but he first saw the community paeds team in year R. His referral came
from speech therapy, where they had been able to see his behaviour over several sessions. School had no concerns and I doubt they would have referred. Indeed I don’t agree that schools should be the ones holding the power over whether children are assessed, based on my experience. The experience and expertise of school staff in this area is quite hit and miss. Even now he masks like a trooper so when his autism does show they’ve invariably forgotten and it’s a huge shock

Original poster
SpinningTops · 19/12/2023 17:28

It's does sound like it's a postcode lottery. I'll see what the GP says and not expect much from the sounds of it.

That's interesting about the number of referrals. I feel I've been subtly hinting in the hope they independently say they think he might have ASD but perhaps they don't want the hassle. He has had some help from the well-being person at school but think it was once only on my insistence and think it was all very generic about emotions.

OP posts:
Original poster
SpinningTops · 19/12/2023 17:32

Peekingovertheparapet · 19/12/2023 17:22

My child was diagnosed when he was in year 1, but he first saw the community paeds team in year R. His referral came
from speech therapy, where they had been able to see his behaviour over several sessions. School had no concerns and I doubt they would have referred. Indeed I don’t agree that schools should be the ones holding the power over whether children are assessed, based on my experience. The experience and expertise of school staff in this area is quite hit and miss. Even now he masks like a trooper so when his autism does show they’ve invariably forgotten and it’s a huge shock

I wonder whether I could ask speech and language therapy to help refer.

He's on their books for end of word repetitions but they've never seen him and just talk to me about how he's getting on. They say (and I do agree) that there's little point in seeing him because he can talk well and it won't change how we deal with it (ignore as he doesn't notice it).

She seems very nice and I can contact her whenever I need so I wonder whether I could ask her to see him in person.

OP posts:
wafflingworrier · 19/12/2023 17:34

In my area its up to 24 months, the process begins with a parent and gp appointment then part of the process is getting the perspective of school but only part of it, so, parents also fill in lots of forms and then all are submitted.
Many parents of my pupils go private to speed this process up, it still takes up to a year but uis recognised by the local authority.
During the 24months of waiting, children's diagnosis can get sped up if there is evidence of crisis at hone or at school, but everything g must be documented to death and have at least 2 6 week rounds of attempts to put different support strategies in place.
E.g I have one pupil who is in crisis but we still have another 6 week cycle to document before then applying for diagnosis sooner.

If behaviours present at home I'd recommend speaking to school, setting up a home/school communication book (just a diary where u can jot down anything from morning or evening each day eg "x was very dysregulated at home, used trampoline/weighted blanket to regulate plus now/next consequences of lost screen time/1:1 reading"
The diary can be good for you to pattern spot e.g. is your child more heightened after P.E. Days? Start/end of week? After a few weeks u can then ask school for support with these trigger days e g. Every P.E. day tell u in advance if it is a team game and who will be jn your child's team

wafflingworrier · 19/12/2023 17:38

You could also pay for a private educational psychologist appointment to build up a picture and evidence, they can recommend strategies you then try at home and then have evidence if they work or not to further your case to advocate for your child.
CAMHs in our area get involved after children are 7 and the waiting times then are galling, so as a school we do all we can to get children into the beurocratic system before they turn 7.
I hope you get the help you need and am so sorry the system is failing your child. It's a disgrace.