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?

It's okay ASAS, I know she would absolutely break down. I cannot even leave her with her father because he can't communicate with her, let alone a room full of strangers. Most days she can't bear the noise of her siblings so a nursery room would cause unimaginable distress to her. The Sure Start Centre is a good plan, thank you. Do you think a normal toddler group leader can refer? I had to give up taking DD to one because it was so stressful that it was just one meltdown after another. Yet at home with me she's mostly a hundred times better.

Ehm have you or the gp written to paeds to explain child is not in nursery. It may be a misunderstanding. As nursery is not compulsory they can't insist on this. Even if gp letter said dd is not in nursery they may have missed this And are just going by normal process

If you do clarify and this is the case put in a written complaint. But no you don't need to send her to nursery if you don't want to.

Even if I did agree to it, I can't even afford nursery which means waiting until September when she receives her funding and that only leaves a year to get things sorted before school and in the meantime she's getting more and more difficult to help/its getting harder to explain her behaviour because there's no professional input

Are there any Children's Centres in your area? Some have pre-schools attached. You could ring them and discuss your situation with them. She might not have to attend many nursery sessions to be observed.

maybe it's a stalling/funding thing

Kerching!

I know services are stretched, but the number of children who are being let down by these policies is pretty unforgivable.

^Sorry meant Sure Start Centres.

Phone the paediatricians Secretary and check that there wasn't a mistake (maybe they thought she was in nursery for some reason in which case they would need paperwork)

If tgey do say it is required say you can't afford nursery and what do they suggest out of there is someone you should discuss it with

If still no success ask for referral to another paed service

Can you enrol her in Playgroup (setting where you leave her for 3 hours ) as that was where dd was and they were able to get someone from Early Years in to do an observation and refer to Paediatrition. Even if you can only enrol her for a couple of days a week they should be able to refer.

Will call/write and clarify that DD is not in nursery and that I have no wish to put her through that stress. She won't even let her dad change her nappy so surely she's actually unable to go anyway as they wouldn't be able to care for her without physical restraint?

Couldn't they observe at a toddler group so that at least I can be there? She would be hysterical at being left, never mind anything else.

I really don't understand why your HV can't refer her. What a ridiculous system!!!

Perhaps ring up some nurseries and explain the situation and ask if they will enrol her just for assessment purposes???

I have seen children being observed at our toddler group
For confidentiality reasons it is done fairly discreetly and I'm sure that most other mums don't notice
But eagle eyed me and I do recognise the observer from our children's services centre
Though I couldn't tell you if she is a Doctor or Nurse or Speech therapist or Health visitor or what.

YANBU they tried this with us for SALT, but we refused point blank, the gp had to refer us in the end.
Our hv was good and helped persuade the gp.

I doubt they'd help Random Mess as theres no financial gain in it for them.

The GP was sympathetic. DD sat scratching her arms til they were bleeding because we'd broken her routine to go to the GP appointment which she'd noted in her referral.

Well if I had listened to the first wishy washy responses I had had from professionals with regards to my dc, neither of them would have been referred. As it was both were swiftly diagnosed once they were seen by the relevant professionals. You DO have to insist and you cannot take no for an answer. Getting an ASD diagnosis is a very complicated procedure and it's very easy to be brushed off because quite frankly half the time "professionals" who do not have significant experience with ASD don't have a clue and it's very easy for many children to fall through the cracks.

OP you need to go back and ask to be referred again taking into account all you have described here. Your child simply can't NOT be assessed because her needs are so significant and effect her so greatly that she cannot attend a nursery. That's ridiculous.

YANBU. My Home Educated ds was diagnosed with ASD without any involvement from school / nursery. He was referred to the child development centre and assessed by their psychologist (referred at 4, formally diagnosed at 6). In place of the school based observations he was observed interacting with us and his sisters. I have known others observed at home ed groups. They absolutely cannot deny a home educated child access to the same medical services as any other child.

Have you looked at the National Autism Society website? They have lots of advice about getting a diagnosis plus a helpline so you can ask for individual support. Also there's an organisation called IPSEA which supports parents of children with disabilities to negotiate this sort of thing. There are other websites with support forums for parents of children with autism who may be able to give you the benefit of their experience as well. I can't remember them all now but you can google search and once you've found a few you'll get links to others. Best of luck.

Who said that?. I'm genuinely confused by your post.

I notice you don't offer any advice on what to do next for the OP. I assume you must have some experience of negotiating the system for a child to be posting on this thread and will therefore know how complex and exhausting it can be. I've done it twice.

I have not criticised the GP in any way but it is true that many of them lack knowledge of ASD hence a current initiative by the royal college of GP's to launch a three year training programme to help raise awareness amongst it's members here

It's quite likely that another referral with more information regarding this child's inability to access a group setting would be helpful, perhaps this wasn't explained fully first time. What do YOU suggest the OP do? Just give up because they've said no and that's not the GP's fault so they shouldn't have to keep plugging away?

We sent ds to nursery at your dd's age so that there would be information to help get him a statement. We chose one that had experience of children with asd. They had a quiet/ sensory room and it worked out ok. Didn't help with his speech though. Alternatively you could look at toddler groups in a surestart centre.

I went to a course on the referral and diagnosis process in my county. The paediatricians were very open about saying that there was no way they could cope with the volume of referrals. They now have a triage system that means many children will be turned away in the way the OPs has been.

We were told that in the neighbouring county where there is no triage system there is a two year waiting list for an initial hour long paed appointment.

I got the impression that a family's fight, and the process of telling their story over and over and over again, now starts on the very first day they ask for help. Great job SEND reform.

Is there a children's centre nearby you can get to? Mine has an additional needs group and they have been instrumental in getting us help and support for ds1. Much more so than the HV was initially. They have professionals come in and can direct/refer to other agencies who can help.

I asked my HV to refer my DD to a paediatrician for possible ASD Dx, and I had a printout of symptoms from the NAS website to show her when I asked. She agreed straight away, though I did have to wait a few months for the appointment. Your GP can do it too - I think you need a new GP!

The paed we see has not recommended nursery as DD had attachment issues (couldn't understand that me leaving the room didn't mean if left permanently) and even said she'd help me access all the help she'd be entitled to in a nursery at home (SALT etc). We've discussed home ed as well.

DD was 18m when the HV referred her.

I have found the best way (for me!) of getting a swift referral with no argument is to go armed with clear paperwork explaining why. The NAS website is good for that. Good luck!

My nephew was diagnosed at two as having ASD. He is on the severe end, doesn't speak, has sensory issues and has only just been toilet trained at 10 years old.

My SIL went through both her GP and the HV as she was concerned that he just stopped speaking. Personally, I would try the sure start centre, the HV and also contact the national autistic society. I would also contact your local authority in regards to a special needs (or mixed) pre-school/nursery.

If she is sensitive to sound, you could buy her some ear defenders. My nephew has these and they help him.