to think I shouldn't have to inflict nursery on my child in order to be assessed for ASD?

[AlmondAmy]

DD is nearly 3. She has a huge number of possible signs of ASD - she has an extremely limited diet and has never eaten hot food, she cannot talk, she scratches and pinches herself til she bleeds, she hates noise, won't touch anything messy (including food), retches at strong smells, can't feed herself, can't potty train because of her aversion to smell and mess, hates affection or even being touched, freaks out if anyone walks toward her, have extremely rigid routines that she cannot cope with changing etc. I went to see the GP in January and self referred to SALT. Both said I should send her to nursery to help with speech.

The referral by the GP to the paediatrician was rejected on the basis that they also require a referral from nursery. DD would absolutely detest nursery and would not cope inthe slightest. She would scream the place down and they'd presume she's clingy and needs to settle in and who knows how long she'd have to endure it before they realised it was something more.

Aibu to think that a nursery referral shouldn't be necessary and that it is cruel to insist on one?

Not to load on more detail, but the stage dd's communication is at - there is a course called Hanen which some authorities offer, usually SALT led, brilliant for supporting and extending the communication that's already there.

You can buy the book if you can't get on a course, it's £££ though and the course is really good.

In the milk situation the Hanen advice would be 'go slow and show'

Oh you want milk dd?

SEN services won't be able to help with a diagnostic process. This is a health issue, not education.

The OP has every right to have her child assessed without involving an educational setting. This is clearly an attempt to save the health professionals time and money which, while understandable, is discriminatory and unacceptable.

The National Autistic Society and PALS are probably the best people to speak to first.

It's all changing though gold my understanding is Education will be the lead from now on for most children with the new EHCP

Gold is correct - it is paediatrician that will give diagnosis on ASD - not SEN -
OP please see the NICE guidelines relating to young people and ASD - gen up on this info so that you are not being sold short by your GP .

Not for diagnostic services.

EHC plans will include childrens' health needs but that doesn't mean educational professionals will get involved in making decisions about health.

They assessment process for ascertaining educational needs is a different one from the neurodevelopmental assessment via which ASD is diagnosed.

Crossed posts with blessed

I completely agree paediatrics
will make the diagnosis but from what I can see OP is struggling in the route for which her local authority needs her to take to get to see the right paediatrics team.
If she calls SEN they will be able to tell her if her GP is correct in what he is saying for her area.

SEN services deal solely with educational provision.

They have no more to do with diagnosis of ASD than that of cancer or diabetes.

Just to be clear. This is nothing whatsoever to do with the Local authority. This is solely a health matter so PALS are the best people to contact or NAS for assistance.

The local authority will only become involved when the child starts to attend an educational setting and requires support.

the therapists advice was to keep putting things DD needs (food/drink) out of her reach so she'll have to learn to speak to ask for it...!

Oh, FFS! Sorry, I had to react to that! It's the sort of ignorant thing I've had said about DS2, only by a friend of my mum's and not a professional who should know better! There's a gulf of difference between can't and won't.

My SALT & reportage worker used makaton symbols with my son. It was so helpful because he learnt to point to the pictures to communicate what he wanted. I made a visual timetable for him so he could see what was happening next & encouraged him to take off a symbol once the activity was completed.

Have a look at the m a nation charity website for further information.

Makaton charity

I disagree that your GP can't do anything more. Have they actually picked up the phone and spoken to the Consultant paediatrician to explain the situation? I say this as a HCP.

I am angry on your behalf that I was able to get a paediatric appointment within a few weeks for my daughter for a minor issue whereas you are having to fight for help.

I spoke to PALS today. They said that ASD is not diagnosed until over the age of 4 which is why the referral to community paediatrics was rejected, as they require a 3 month observation period in an educational setting. I just don't understand how support is put in place/a decision about mainstream or additional needs schooling is made if no diagnosis is made until after school starts? I can't see DD being toilet trained for years as she retches or is actually sick over strong smells and so can't use public/communal toilets and she cant stand the thought of messy hands so I cant see her wiping herself, therefore surely she'd be unsuitable for mainstream school on this issue alone but wouldn't havea ddiagnosis in order to be able to access a school more suited to her needs?

PALS recommended I revisit the GP and ask to be referred to acute paediatrics and they will observe DD on a ward, which I will do but am feeling disheartened that it's going tobe at least 18 months until diagnosis when DD is struggling now.

Either PALS is talking rubbish or your local PCT have some dodgy rules.

My boys were 3 and 2, when they were diagnosed.

It's a postcode lottery, a lot of LAs are a lot better at dealing with this. My DS was diagnosed at 3 but other parents I've spoken to recently are reporting long delays. It took 9 months to get diagnosis, another child at our Rainbow group was dx'd in 6 months. As an interim suggestion, maybe PECS would help with communication? Like this. You can print them off, laminate them and link them into a bunch with a split ring, they're easy to carry around. They helped with my DS, he was verbal but struggles with language. Makaton is also a good suggestion.

I really feel for you, it's so hard even when you do have support. I do think you should try to find local groups for dc with social communication disorders, it can be a lifeline for the parent for support and advice

That's crap OP and yes, very disheartening.

Have you posted on the SN boards? There are some very knowledgeable posters there who have fought tribunals and all sorts, they may be able to advise you on your rights.

As far as I know, my nephew was diagnosed through attending a special needs nursery, and by speech therapy. I don't think he ever saw a paediatrician. He also saw child/educational psychologists, but it was the speech therapist who pushed through his application to a special needs school and ruled out mainstream.

I would get in touch with NAS, get in touch with local groups/toddler groups through them. Is there anything at the children's centre for SN? Somewhere for parental support?

It's not an LA thing, Noodles. It's a healthcare trust issue. Someof those cross LAs. Some LAs have many healthcare trusts operating within their boundaries. They are completely separate entities.

And do come over to SN children and SN chat. You'll (sadly) find that you're far from alone.

Well I'm blown away that they don't understand what a discriminatory policy that is. They have no right whatsoever to insist that any child attends an educational setting before being eligible for a health/developmental assessment.

I would speak to the NAS and ask what their response to this practice is. They may be prepared to make some representations on your behalf.

If you have a sympathetic GP you could ask for a referral to a specialist diagnostic service. The nearest one to us in the Midlands is here but there are others dotted around the country notably at Alder Hey and Great Ormond Street Hospital.

They can't put barriers to DC receiving health assessment like that. In your shoes I would formally complain to the GP, PALs and local Councillors, even my MP, and would seek advice from a non profit organisation such as IPSEA.

This doesn't sound right. DS was assessed last year and again in January. Both times he was assessed at home. Now I do live in the US but this a state program and the staff have been amazing. They told me they prefer to assess in the environment the child is used to which is why ours was done at home and not in daycare. I have started DS in daycare because his issues are his speech delay and overall lack of communication. He doesn't have any behavioural issues.

What I found very helpful was getting my son seen a developmental pediatrician. Their assessment did identify a couple of issues the initial assessment hadn't identified. They have been great at getting my son into a specialist feeding program too.

I am no expert on child development but given the description of your observations in your post OP I would be complaining in person and letter to your GP, local councillors and your MP.

She said it's an age thing Goldmandra - that they have that policy because so many dc grow out of the traits by 4. I agree that it's discriminatory - if I wanted to home educate, does that mean DD wouldn't be able to be diagnosed and receive support??

Amy do you know if your GP has spoken to a member of the paediatric team or was the referral rejected on the basis of a letter? If not I really do think that they need to. This may be the only way of getting round a tick box referral pathway.

You have significant concerns and whether or not anyone is willing to make a formal diagnosis at this age is in a way irrelevant - you and your daughter need support now.