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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:
wafflingworrier · 19/12/2023 17:44

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.

If you go back to school with a list of behaviours, and an attitude open to any and all strategies they suggest, they shouldn't fob you off.
E.g. if visual timetable works at school, can they please give u a copy to have at home? Can they talk u thru how they use it?
Put your request in writing
E.g. At home x's behaviours are escalating. After school most days they will have a meltdown involving violence/biting/hurting g themselves/destroying furniture that last between x and y minutes.
Please could you recommend strategies for supporting x in expressing their strong feelings safely?
Please could I meet the school support worker once a month to discuss progress and further support?

Then email again if behaviours escalate
E.g. meltdowns on Monday days are normally 1.5hours, could you give me a copy of the school timetable that day please so I can pinpoint what is triggering x?

Original poster
SpinningTops · 19/12/2023 17:44

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

That sounds like it's just what we need. We know points that are bad, E.g. Monday mornings.
Imagine it's time intensive for the teacher so not going to be something they're forthcoming with.

OP posts:
BMIwoes · 19/12/2023 17:47

Look up right to choose, this is available in some.areas for gp referral to private assessors

Interested in this thread?

Then you might like threads about these subjects:

Children's health General health SEN
icallitasplodge · 19/12/2023 17:47

How does a person “go private”, where would they begin and who ought they seek?

wafflingworrier · 19/12/2023 17:50

It is unfortunately teacher dependent, but ultimately if you email explaining how upset you child is at home they can't ignore it
And it may be quite an easy fix at school e.g. if I get a super brief email from one set of parents on a Monday morning saying it's a "bad start" for their child I change my staffing so that child gets 1:1 support first thing rather than expecting them to enter the main classroom.
It is, unfortunately, easier to justify if their behaviours manifest at school e.g. this child will end up throwing furniture if their needs aren't met early enough to safely calm. But the principle is the same, so if you give them your home perspective they shouldn't ignore it.

RedToothBrush · 19/12/2023 17:52

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.

The way it happened with us is school gave us leaflets about neurodiversity in yr2 but didn't actually speak to us about it. Which left us very confused. And quite angry tbh.

Then in yr3 there were a bunch of issues so we said straight flat out was it possibly ADHD? She had seemed to us as if she'd been actively dropping hints to this point. To which the teacher seemed to visibly blow a sigh of relief. And she started the process rolling.

We are now in yr4. DS has had the first phase of the referral and we'll see where we go. For various reasons I think we'll hit a brick wall tbh.

A friend had someone from CAHMS tell her last year that her daughter was probably ADHD but they wouldn't pick up on it or get a referral for it for years. She's under CAHMS for something else but they can't do ADHD referrals because that's got to go through school. She had been sat with DS at school because the pair of them were struggling with focusing and completing tasks so they'd been given a slightly different activity involving drawing to keep them focused...

Magically with a new school year, I hear from my friend that school are now putting her on the referral pathway... Funny that.

I've had a TA (who works at the school but is a close friend) tell me that they aren't allowed to suggest any type of neurodiversity to parents at all now. They have to wait until parents raise it - unless the child is pretty much in a safeguarding situation which is raising concerns about safety to themselves or other kids. This was pretty much confirmed by other friend (above mentioned teacher in neighbouring county) because the councils don't want to fund referrals.

The thing that pisses me off is the school simultaneously has to observe and refer so the teachers are trained to know what to look for, but they can't tell parents the kid is ticking all the boxes they are taught to look for!

And even if you ask the question, they will only refer if they have 'referral spaces' that year. Otherwise you have to suck it up and wait whilst they tell you there's no issue / issue isn't big enough until it reaches the next September and you enter the next annual referral space lottery.

So the kids who need a referral struggle for long than they should (with consequences to their mental health and education) whilst the rest of the class also get disrupted and the teachers struggle to deal with the whole sorry mess.

Meanwhile if I lived literally 2 miles down the road, I wouldn't have to go through this fiasco, and they'd just assume DS was ADHD and give him reasonable adjustments in school without any of this hoop jumping at all.

It's fucked up.

TheCountessofFitzdotterel · 19/12/2023 17:53

If you go private you don’t need a referral.

GP can refer but in my area the NHS does another layer of triage before they actually add you to the waiting list. CAMHS started the process of referring my ds in the summer and 6 months later we have had a message saying we have been allowed to join the waiting list.

I contacted a private service who phoned me back the next day and have appointments booked for early January.

spanieleyes · 19/12/2023 17:55

In my county, requests for assessment go from the school to the community paediatrician, GPs refuse to complete them now. However, the " school " referral consists of 17 pages of parental information, 10 pages of teacher information and 3 pages from the SENCO. So each has an input into the process and, in theory, children who mask in school can still be assessed.

Mind you, the vast majority now fail at the triage stage and we are told it is behavioural, emotional or something else! Very few actually go through to assessment.

RedToothBrush · 19/12/2023 17:55

If you go private it's not recognised by the schools in my area...

... you have to go through process here.

Again 2 miles down the road it's totally different.

Otherwise we'd seriously consider it - it just opens a can of different problems going private here and doesn't actually solve the issue.

PocketSand · 19/12/2023 18:19

I also do not agree that schools should decide who is referred on the say so of a SENCO or that budgetary concerns should even enter the process.

It is absolutely fine that school complete questionnaires and submit information to aid diagnosis. But not that they trump medical practitioners or that parents cannot access medically trained assessors unless allowed to do so by those without the training or authority to diagnose.

DS2 had been in the system since being referred to community paediatrics and speech and language since he was 2. He was eventually diagnosed aged 9 by GOSH following ADOS, SALT, OT and their report was very critical of the failure of the school to notice/accurately report significant and obvious signs and act to block appropriate support.

Schools lie/minimise, particularly primary schools, especially where behaviour is not disruptive to the learning of others, because the child will have left the class/school before the shit really hits the fan. Parents, not so much. They care about the child's well-being up to 18 and beyond.

If the school have no concerns, why are they using a visual timetable?

Knowing what I know now (10 years out of date - spoiler - it's not got better) I would go private if I could afford it (you should consider DLA if the impact is significant). Private diagnosis cannot by law be ignored. Push comes to shove (in terms of EHCP at tribunal) NHS assessments will always be requested. Eg private diagnosis of ASD = referral with appointment before tribunal date to try and refute it. They don't refute it in my experience and the 98% of parents with successful tribunal outcome.

KeepGoingThomas · 19/12/2023 18:51

Have you checked whether you can self refer? In some areas you can.

If you go private, the school and LA cannot have blanket policies of refusing to accept independent assessments and diagnoses just because they are private, and SENDIST considers all evidence.

autienotnaughty · 19/12/2023 19:09

In my area over 4 are referred via school. Typically it takes upto a term for school to gather evidence . Appointments with paediatrician are upto a year and referrals to pathway are currently at two years . So approx 3-4 years to diagnosis.

I would ask senco to assess and for a Sen plan if you feel it's needed.

Definitely worth seeing gp. Rather than discussing autism specifically I would say you have concerns about his neurological development and you would like a referral to paediatrician.

I'd start reading/researching /understanding now . Even if/when you get a diagnosis there's very limited support for parents. You basically get the diagnosis and are immediately signed off from NHS. Without a diagnosis school can put support in place and apply for ehcp

autienotnaughty · 19/12/2023 19:12

Getting other professionals involved is a good idea - salt if there's speech issues . When you talk about your child always describe the worst days - these are the ones your dc will need help/support for. It can be tough describing your child negatively but it's important professionals know exactly what's happening

wafflingworrier · 19/12/2023 19:26

PocketSand · 19/12/2023 18:19

I also do not agree that schools should decide who is referred on the say so of a SENCO or that budgetary concerns should even enter the process.

It is absolutely fine that school complete questionnaires and submit information to aid diagnosis. But not that they trump medical practitioners or that parents cannot access medically trained assessors unless allowed to do so by those without the training or authority to diagnose.

DS2 had been in the system since being referred to community paediatrics and speech and language since he was 2. He was eventually diagnosed aged 9 by GOSH following ADOS, SALT, OT and their report was very critical of the failure of the school to notice/accurately report significant and obvious signs and act to block appropriate support.

Schools lie/minimise, particularly primary schools, especially where behaviour is not disruptive to the learning of others, because the child will have left the class/school before the shit really hits the fan. Parents, not so much. They care about the child's well-being up to 18 and beyond.

If the school have no concerns, why are they using a visual timetable?

Knowing what I know now (10 years out of date - spoiler - it's not got better) I would go private if I could afford it (you should consider DLA if the impact is significant). Private diagnosis cannot by law be ignored. Push comes to shove (in terms of EHCP at tribunal) NHS assessments will always be requested. Eg private diagnosis of ASD = referral with appointment before tribunal date to try and refute it. They don't refute it in my experience and the 98% of parents with successful tribunal outcome.

I appreciate this is your experience, but not every primary school is like this. My school are not. We have the other extreme, where we have children desperately in need of diagnosis but parents who block it because they aren't ready (for a multitude of reasons e.g. their own predjudice/denial/kisplaced desire to avoid labels on their child that they feel could limit the child's life in some way).
A lot of primary schools and teachers work very hard to get children the help they need and are equally frustrated by the system.

MargaretThursday · 19/12/2023 19:33

I had ds referred by the GP, but I also have been told that the school has to have input. In my case we managed to avoid it by using his drama teacher (who saw him far more than any one teacher at secondary school) as it was during covid.

I was told that they won't diagnose unless the traits are seen in more than one environment, and it seems to be that if school doesn't agree you're unlikely to get a diagnosis. Which is rubbish if the school either doesn't want to see or doesn't see it.

1daughterand3sons · 19/12/2023 19:38

It can be a long process especially if he is coping well in school.
For many years we knew DD was autistic but she was coping well in school so no one would listen to us.
Then there was a sudden change she wasn't coping in school anymore and was regularly being sent home.
The school then wrote a letter for the GP who magically sent off a referral she was 6 at the time and wasn't diagnosed has autistic until she was 11 years old.
When she was 7 she was given a ADHD diagnosis.
Now she's 16 and had a dual diagnosis ADHD- impulsive type and Autism.

My son on the other hand got his diagnosis by the time he was 3 years old
I think it helped that by this point his sister already had a diagnosis.

Wolvesart · 19/12/2023 19:38

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.

That’s interesting to hear. So a GP - a medical professional - can’t refer. The world has gone upside down 🙃

Wolvesart · 19/12/2023 19:41

MargaretThursday · 19/12/2023 19:33

I had ds referred by the GP, but I also have been told that the school has to have input. In my case we managed to avoid it by using his drama teacher (who saw him far more than any one teacher at secondary school) as it was during covid.

I was told that they won't diagnose unless the traits are seen in more than one environment, and it seems to be that if school doesn't agree you're unlikely to get a diagnosis. Which is rubbish if the school either doesn't want to see or doesn't see it.

It’s often schools who attempt a diagnosis that the professionals don’t support

avemariiiiiaaaa · 19/12/2023 19:44

In most areas a referral needs to come from school with evidence to back up the need for an assessment.
And they will want plenty of evidence.
Then they will go on a waiting list to be assessed by an Ed psych who will then determine whether a further assessment/pathway for something specific is necessary.

Twixandtinsel · 19/12/2023 19:50

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

This is my DD too. Almost TOO well behaved in school, as was petrified of putting a foot wrong - it was exhausting for her and she suffered a period of what we now know as autistic burnout as a result. She's now been diagnosed (age 12)

spanieleyes · 19/12/2023 20:07

@Wolvesart

In my local authority, GPs used to refer direct to the community paediatrician for a multi disciplinary assessment . The GPs then decided they couldn't continue to do so, it was passed over to schools without any discussion or consultation. It just became our role. Unfortunately as part of the process, we are expected to decide what medical condition a child has, whether it is ASD, ADHD or some other neurological condition that we are referring for. Quite how or why we are expected to diagnose medical issues, I don't know, it's not our job- except it now is! We have apparently become the experts! So we have to pre-diagnose, collect the evidence, make the referral and then try to explain to parents why it's not successful( it rarely is).

Grandmasswag · 19/12/2023 20:09

I've had a TA (who works at the school but is a close friend) tell me that they aren't allowed to suggest any type of neurodiversity to parents at all now. They have to wait until parents raise it - unless the child is pretty much in a safeguarding situation which is raising concerns about safety to themselves or other kids. This was pretty much confirmed by other friend (above mentioned teacher in neighbouring county) because the councils don't want to fund referrals.

Interesting. I had been told that schools don’t outright mention it until a child is 8. This seems to have played out with a friends child who is so plainly classically presenting ASD I could never understand why they hadn’t had a diagnosis years ago. The parents had never realised, probably because the father is asd himself and now they are facing a 2 year wait whilst everything falls apart at home and school. This is a child where staffwere fully aware at nursery age, and not one person had thought to suggest. He may not even have a diagnosis in place by secondary. It’s a bloody disgrace.

DrFoxtrot · 19/12/2023 20:13

In our area you have to be referred by school. The website info for the local Neurodevelopmental Pathway states lots of different professionals can refer, including GPs! In reality, the referral is always rejected, asking that the school make the referral if they have concerns. We have gone back to the local ICB to clarify as it's very misleading and makes parents, understandably, think GPs can refer.

Buttercup176 · 19/12/2023 20:17

Our GP brushed it off on our first appointment, eventually got him to refer us, gave up waiting for NHS after 12 months and got a private diagnosis. The several thousand pounds spent are worth it not to have an angry emotionally disregulated child who hates life. School aren’t particularly onboard as DC masks at school and to date ADHD has caused more of an issue [for them].

Wolvesart · 19/12/2023 21:02

My only experience of this is with a close friend whose child was at a private school. The school behaved very badly, they engineered a referral. Parents and school filled in separate copies of what I think she called a ‘behavioural descriptors questionnaire’ . The school didn’t even show her what they had put down before sending. I think the next step was a child development clinic (?) - anyway the paediatrician threw it out. Her child left the school, went to a more academic school and sat half her GCSEs early. Now at med school.