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?

They can't have a referral from nursery if she doesn't go!!! Go back and make it clear that she doesn't go, so that box will have to remain unticked and that they should take all the obvious cues that you have provided and get a move on and act on it. Good luck.

ditto contact the national autistic soc, they will have some great advice on how to get the ball rolling

This sounds odd to me. In sure my gp made the referral, even though DS was in nursery, the nursery had virtually nothing to do with the process. In fact, I remember that he moved to school during the year it took to get a dx so obviously not much involvement. Also both school and nursery in different borough to health trust so definitely not a thing. Have you tried simply talking to a different gp within the practice? Could be a crossed wire quite simply.

"Your GP can do it too - I think you need a new GP!"

Her GP did do it too. It was the paediatrician who turned them down.

You could try through your hv. Our hv was the one who referred ds to the pead. The gp had said she couldn't see anything wrong. Ds is severely autistic. The pead will be going on what the gp has written.

Try going through speech therapy. It took almost a year between GP referral and first session with a speech therapist for us - but once the sessions started, they enquired about other issues and booked us an assessment with paediatricrician within a month (we got a cancellation slot).

Speak to the national autistic society and tell them exactly what you have told us.

Call your LEA and ask if they have a SN specific nursery (my LEA has 2, one for under 3's & 1for preschoolers).

Request portage as well, I can't remember who referred my son maybe HV or GP.

Find out if you have a local autism charity/service who can push for a referral on your behalf.

Sending your dd to a mainstream nursery will be a horrendous experience for her & should be completely avoided.

OP have you written it all down as a summary?

It's very helpful to have an A4 page to tout about with all that you've described on it. We went to CAMHS and they saw DS in his most preferred setting (quiet room, lots of adults attending to him, new toys). They then told me he was fine because and ADHD child 'would have been bouncing off the walls'. It was only me writing a summary and sending to to them that made them assess him properly.

FYI also in my area the paediatrician is also a gatekeeper, as is CAMHS. DS was assessed for ASD (they said 'just' ADHD ) after going through GP, paed, CAMHS- and finally to a tertiary (I think that's the term) regional child neuropsychiatric service.

It's so easy looking back to look at DS and know what had been going on with him all his life - but so confusing getting to see someone who can diagnose.

At each level we were told they may not take the referral. I had to state that I would continue to ask to be referred, and didn't need school to refer in our case. It may also help if you have anyone close who is in childcare or education - in my case I stated that I had a close family member with 30 years experience in special ed who had said he should be assessed from the age of four.

I really hope you can get the help you need
The special needs boards are v good

Which local authority/ health authority are you under OP? I only ask this because the route to assessment differs in every one. In Lincolnshire due to a high volume of referrals they now triage all referrals and will only see children, if school or nursery have exhausted all options of helping that child and they are supposed to write and say we have tried x with the child but y still keeps happening so we asked this service to come in but that didn't work either. Its a horrible system. My son (ASD) was ok in school but home was a very different story. I went to the gp he supported me and made a referral which was turned down by the new triage team because school said they could manage him. I wrote and said this was unacceptable and that I wasn't managing. I got sent a letter saying it was a service under pressure..... Blah blah! Anyway in the end we got a referral to children's services and chikdrens services have the right of referral so our social worker wrote a brilliant report stating he needed assessment and he got a diagnosis within 3months.

It is a rotten system OP. It sounds like you are pretty sure what's going on here and you know your daughter wouldn't cope and it wouldn't be fair to put her in a nursery and I respect you for that.

Please consider portage, in out area you used to be able to self refer. They got one of my children from non verbal to verbal and their help and support was fantastic.

Having a child with SEN toughens you up. I don't take any crap now from anyone and will fight just as hard as I need to to get my children the help they need. Its draining though and upsetting and in the beginning being turned away makes you doubt yourself but don't!

Fight, make a formal complaint, go to your mp and say it simply isn't acceptable for a child who has a medical need to be denied assessment and access to help.

Seek out a local autism charity or speak to the national one. Get support from the children's centres. Do whatever you need to do to be heard! Good luck!

Thank you all so much for your help - it's really appreciated. I've emailed two local autism charities and portage and will make an appointment with the HV on Monday. She's seen the SALT once back when we had a paediatrician appointment coming up (or so we thought.) Perhaps they'll help with referral when we're due to go back (May) now we haven't had one. Though I admit I'm a bit sceptical about SALT - I discussed speech and bought up about the other signs DD is displaying and still 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...!

And to the poster who asked - DD is growing, just about. She's very petite, still fitting in some 12-18 months clothes and looks much younger than her age. Luckily the limited foods she eats are a couple of types of meat, a few fruits and sometimes bread and cheese so her weight hasn't dropped off the charts.

Your DC absolutely does not have to go to nursery for this process to be finalised. If you have a local Children's Centre they will be able to refer you onwards through one of their programmes (ask an outreach worker what's best). They will probably have close links with CAHMs, SALT and Health Visitors who can work together under the aegis of the Centre. They will probably suggest that you attend some sessions of a stuctured stay and play (Like Pen Green's "Growing Together" model) for observation. But that would be with you in attendance, and under your control to minimise the stress for your DC. As others have pointed out there are many routes to diagnosis, and none of them have to involve putting you and your DC through the stress of nursery.

I know SALTs who would disagree with the advice to force her to ask for things. They would just suggest you keep talking to her about what she is doing, e.g. Oh you're having some drink.

When she does try to communicate a need she can't access herself, tell he what she's asking for so she keeps hearing the words but don't pile the pressure on her to speak. Pressure to conform to demands can be counter-productive for children with ASD.

Almond my heart goes out to you - I have bypassed the system with my 2 DC in the past in order to get to a paed - I have paid privately for the initial consultation .

It might be worth searching the net for paeds in your area that have a particular interest in ASD- and then ask your GP to do a private referral to that paed .
it's likely to be a requirement of your surgery to have a referral from nursery in order to cut down the cost of "inappropriate" referrals - but if you could pay for the initial consultation it will get you seen and into the system . Consultations can be between £150-£200.

Stick to your gut instinct - I agree nursery would on balance not be in your DDs best interests (or yours) .

Sending hugs OP please please ensure you are getting real life support and tlc.

Might be worth contacting PALS as well and they can act on your behalf to the hospital.

I agree Gold, it's pointless to try and force it. I told the SALT that she has a noise for water and a noise for milk so effectively she does ask for it, just in a way that no one but me can understand. She advised I ignore the noise and keep repeating the word

Oh dear OP, my heart goes out to you too. The fight to get ds1 diagnosed nearly bought me to my knees.
Never give up, but make sure you have RL support.

is just rubbish that you are considering waiting until May for a referral because they have done this. That's just a extra delay.

I really hope you find a quicker and easier route. Make sure you mention you are door stepped by your MP

I was at a meeting about the new SEND reforms and was told that EYFS staff/practitioners can no longer do direct referrals for children and that it has to be paediatric doctor led.
I'm not sure if this is just the interpretation of my local authority but may be worth finding out. The new SEND reforms are going to change a lot of things.
I know she's slightly younger but perhaps you could call your SEN education team at the local authority and see if they can tell you the exact referral procedure.

Viva- PALS - yes definetly- good idea .

It may be that the SALT you've seen has a poor understanding of ASD.

There's a fine line between giving children incentives to speak and putting pressure on them to speak. A child who is at all demand avoidant (quite common inASD) or a child who is unable to speak could end up speaking/trying to speak less because of this sort of pressure.

I am loathe to suggest anyone goes against the advice of a qualified professional but, in your position, I would continue modelling the speech I wanted to hear and responding positively to efforts to use speech rather than requiring speech in order for my child to get her basic needs met. I'd then ask for an assessment from a SALT more skilled in dealing with speech delay in children with ASD.

I'm a HCP and I actually agree with Gold - in fact I would go as far to say that the SALT may have a poor understanding of children full stop given her advice - pressure for children can often have an adverse effect .

You simply cannot go wrong with lots of positive reinforcement for the style of communication that she is trying and succeeding with - certainly not the opposite and ignoring it - as it may increase her levels of anxiety and frustration - tbh OP as a HCP and a mum - I think listen to what HCPs have to say and THEN select what you think is appropriate and best for your daughter and you. I really do believe in going with your own gut instinct.
The advice of the SALT seems to be about trying to get her to fit into our "world" which is not what it should be about - it is about supporting your daughter to feel secure and comfortable in her own little world, so that she CAN communicate her needs and be understood by others.

I had a friend going through speech therapy (no ASD though) who was given the opposite advice that you should reward all attempts at communication and just respond with the proper word while carrying out the request. e.g. She makes her sound for milk, you say "milk? here is your Milk" just being sure to speak very clearly and emphasis the key word (milk in this case).

I agree with the PP that if you could possibly afford it it might be better to pay for the initial consultation with the ped to get the ball rolling - probably cheaper than paying for nursery. Although I agree that you absolutely shouldn't have to - from what you've described it's obvious that your daughter should be assessed ASAP. If she's almost 3 she'd be starting school in a year and a half!

I would contact your Local authority SEN department and ask what their procedure is for referrals for support for under school age children and also if the referral has to come through a paediatrician. In some areas it does, but in others, other professionals like GPs, HVs etc can refer to education.

I would then try and get a place at a specific nursery attached to a special school skilled in dealing with children with your DD's needs. The difficulty may be if they are sticklers for needing an Autism diagnosis but if it's under investigation you may get round the criteria.

I would agree that sending her to a mainstream nursery at the moment would likely be very distressing for her.

Also you have to be a bit wise in your attitude.

The long and short of it it that being brave and noble womt get the baby bathed:

You have to cry - you have to cry on the phone and in consultations. You have to cry and when they say 'no' you have to be silent and wait for them to say something else. Saying "ok thanks, goodbye" isn't an option.