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Can I stop the referral

30 replies

purpleme12 · 28/05/2022 01:52

School have referred for autism however it was just based on her behaviour at home recently.
I'm convinced she doesn't have it.
How do I stop it? By contacting school? Or her doctor? Does it go to her doctor?

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LittleDoveLove · 28/05/2022 06:51

I think you should just be able to contact the paediatric department of wherever the referral went or you don't want them to be assessed. I don't think anyone can make you get a diagnosis. There are a number of tests to get a diagnosis.

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cansu · 28/05/2022 07:45

Wait for the appointment and then decline it. However it takes a long time to even get an appointment in most places. You don't want to decline and then regret your decision later. It is unusual for a school to refer based on behaviour reports from home unless you have been exceptionally demanding! They would normally only get involved in a referral if they had seen traits or had concerns themselves. If your dd does not have autism she won't get a diagnosis.

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Punxsutawney · 28/05/2022 08:05

Like cansu says, they won't diagnose autism if she's not autistic.
You must have flagged some significant difficulties at home, for school to make a referral. Quite often it can take parents months, if not years of pushing to get their child referred for an assessment.

In our area a school referral for autism would go to the local community paediatric service at the child development centre. They would then make a decision as to whether they would go forward with an assessment. But other areas could be different.

Have you had a meeting with the Senco to discuss things? Are you sure that school have no concerns there?

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purpleme12 · 28/05/2022 08:56

So what happens next? Is an appointment with a hospital coming through to me what happens next?
How long would that take?

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LargeLegoHaul · 28/05/2022 09:30

Who assesses and where the assessment takes place varies area to area. In some areas in is CAMHS and in others it is a developmental community paediatrician, and in some who assesses depends on the child’s age. Sometimes assessments are in hospital but more often they are in other medical centres.

Given your recent threads I would keep the referral and let the team assess, if they don’t think DD has ASD they won’t diagnose but they may refer on it they think DD needs a different type of assessment or support.

Did the school not discuss the referral with you first?

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purpleme12 · 28/05/2022 09:44

I just would be thinking more ADHD if she does have anything

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LargeLegoHaul · 28/05/2022 10:13

Ask for an ADHD referral as well then.

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purpleme12 · 28/05/2022 10:32

Is it that they have an appointment with the parents to discuss it that happens next?

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purpleme12 · 28/05/2022 10:33

We haven't had any extreme meltdowns this week and almost no screaming so we might be getting somewhere

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Punxsutawney · 28/05/2022 10:35

purpleme12. You would probably be best asking the Senco about how the referral works. As it differs from area to area.

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Veebs21 · 28/05/2022 10:47

You seem worried about getting a diagnosis. As others have said, they won’t diagnose if she isn’t autistic, so it is worth keeping the referral in place - if they get to diagnosis and think ADHD is more of a concern, they will say so. And they may not even assess her if the preliminary questionnaires that get sent to school and you (in our area at least) don’t reach their requirements for an assessment.

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purpleme12 · 28/05/2022 12:11

I'm just starting to wonder if we've turned a corner in her outbursts

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LargeLegoHaul · 28/05/2022 12:25

If you stop the referral what happens if in e.g. 2 weeks or 2 months things are back to how they have been? You then need to start again and have wasted time.

Even if things are improving assessment and potentially a diagnosis (whatever that is) will help.

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purpleme12 · 29/05/2022 20:59

It just feels really wrong. I'm as close as I can get to 100 per cent that she's not autistic

I would be more willing to consider ADHD/add
Her dad has it.
Her dad thinks she might have it.

Does the parent get contacted after this by whoever to discuss more? I mean is this what happens as the next step?

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cansu · 30/05/2022 08:20

It sounds like you want to have control of this process and saying you would be more willing to consider ADHD is a bit odd. If she doesn't have asd or adhd then she won't get a diagnosis. Getting any kind of diagnosis is upsetting. However, it must have been very bad for the school to agree to refer. Glossing over the issues won't help in the long run.

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purpleme12 · 30/05/2022 08:59

Yes I guess I do want to have control over the process

But really a lot of us could say we have autistic traits couldn't we
But it doesn't mean these people have autism
So because there's no specific blood test for these things

I know quite a bit about autism and it still doesn't ring true to me. I believe my reasons for adhd/add are valid still.

I'll see how it goes I guess

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soootiredddd · 30/05/2022 15:23

Just let her have the assessment. If she isn't autistic then she won't be diagnosed as autistic. If she is, then she will. Why are you worried about the assessment part of it? An assessment is just a set of measures. If you don't go through the assessment process that doesn't mean she is or isn't autistic. It just means you haven't got her assessed.

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Cryingintherain99 · 30/05/2022 15:39

I honestly wouldn't risk losing your place on the waiting list.
We've waited a year so far and been told another 14 months at least before we even get an appointment.

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LargeLegoHaul · 30/05/2022 18:43

As others have posted how it works in your area depends on where you are as the process differs in different areas.

If the HCPs don’t think DD is autistic she won’t be diagnosed. If DD meets the criteria for diagnosis then she will be diagnosed, if she doesn’t she won’t. If they think DD needs a different assessment as well or instead of they will say. There is overlap between the different neurodiversities.

I don’t know why you would turn down an assessment when so recently you have been exhausted, wanting more support and desperate for others to recognise DD’s needs.

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purpleme12 · 30/05/2022 19:12

Yes I have been you're right.

Maybe it's because this past week has been better

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purpleme12 · 30/05/2022 19:14

But You're right perhaps I'm just being silly

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LargeLegoHaul · 30/05/2022 20:20

But that’s just one week, there is always going to be ups and downs, what happens if you cancel to referral and things deteriorate again. You will kick yourself for not continuing.

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Needanewadventure2021 · 30/05/2022 20:33

Im surprised school has made a referral based on behaviour at home. My DS school refuses as he presents the complete opposite apparently. Even after years, no amount of constantly going on, crying for help and getting angry at their lack of support they still refuse to refer him. Now the doctor is making a request for them to do so based on other things in school.

From my own experience this is a long process with school. For school to get involved with home behaviour when they don't see it themselves you must have been making them aware and it being quite serious. My son threatens serious self harm and is always hurting himself. He picks at cuts making them bleed and risk of infection. He is awfully agressive. Refuses to leave the house. His meltdowns are terrible. His emotions are uncontrollable and unpredictable but school still refuse to help.

What I will say is if you have any doubt do not remove your child from the pathway. I did this when my son was 3 as I hated how unsupportive the whole process was and naively thought I'd just handle it myself. As soon as I removed him I've been battling to get him back on as things very quickly deteriorated. now I'm here nearly 5 years on with a child who desperately needs help and im still struggling to get him back on the pathway

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RaisingAgent · 30/05/2022 23:03

Can you share what your reasons are for thinking your DD might have ADHD? And reasons for thinking she is not autistic?

The reason I ask is that when my DD was 2, we knew there was something different going on for her, but we felt sure at that point that it couldn't be autism (my older child had already been diagnosed with autism so we knew lots about it). We thought DD had ADHD, as she had impulsivity, huge meltdowns, risky behaviours. But she seemed socially fine, very verbal, big vocabulary.

By age 3.5 DD was diagnosed autistic. Autism in girls can look very different to boys.

Then recently (age 4.5) DD's diagnosis has been updated to say Autism with demand avoidant profile. This basically means PDA (pathological demand avoidance).

We also still think DD may have ADHD as well, but can't ask for referral for this until she is 6.

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purpleme12 · 30/05/2022 23:10

RaisingAgent · 30/05/2022 23:03

Can you share what your reasons are for thinking your DD might have ADHD? And reasons for thinking she is not autistic?

The reason I ask is that when my DD was 2, we knew there was something different going on for her, but we felt sure at that point that it couldn't be autism (my older child had already been diagnosed with autism so we knew lots about it). We thought DD had ADHD, as she had impulsivity, huge meltdowns, risky behaviours. But she seemed socially fine, very verbal, big vocabulary.

By age 3.5 DD was diagnosed autistic. Autism in girls can look very different to boys.

Then recently (age 4.5) DD's diagnosis has been updated to say Autism with demand avoidant profile. This basically means PDA (pathological demand avoidance).

We also still think DD may have ADHD as well, but can't ask for referral for this until she is 6.

Because her dad has ADHD (and we know it can run in genetics)
The recent behaviour
Basically not being able to control herself.
Her dad thinks she's got it I think.
It's quite hard for me cos to me, she's just my child, just she is who she is and that's her! So how would I know what is children's behaviour eg losing things and what is more ADHD behaviour? Because lots of children lose things etc don't they



It is school who suggested the autism referral I think that was based on the meltdowns recently though. I did say I don't think she's got that. I have mentioned the ADHD link to them

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