Health visitor refusing to refer 15 month old

[Kstar7]

My DS is 15 month old. He scored "black" for communication and personal/social in ASQ in his 9, 12 and 15 month reviews. Also had some areas in grey. I understand this should warrant some further investigations.

HV keeps saying "watch and wait" and that they won't make any referrals (apart from hearing test which we are still waiting for) until he is 2 years old. Even then before referring him they will want nursery to do extra activities with him for at least 6 months. So we're looking at minimum of 2.5 years old before any referrals are made. And then obviously long waits to be seen by anyone. GP keeps saying development of children under 5 is a matter for HV so not interested.

It's very frustrating and I feel I'm failing my son despite desperately trying to help and support him. Does anyone know if there are any standard rules about when HV can refer? I've seen other posts of children being referred/seen before the age of 2 so I think it might depend on specific HV or area? What else can I do to get my son into the system quicker? Not sure why they bother with these reviews if they're not going to do anything about the result anyway!

Yes, it is area dependent, I talked our HV into referring a couple of months before 2, but that's the common cut off in the NHS.
If you look up your local hospital, the referall criteria are quite often on their website, if not call up the department itself and if you ask they generally can explain them or send them over to you.
I will be honest though, we waited 18 months for SALT involvement, they did a report for his autism diagnosis, gave me 4 sessions of advice most of which I was already doing and then discharged him. So although not ideal to wait for the support, it will be quite minimal.
I'd recommend looking into if there's portage services in your area as they don't have a minimum age and have shorter waits, they can also accept referrals from parents, and also calling speech and language UK as they'll give some appropriate advice to get started with.

Second looking at Portage and speaking to Speech & Language UK. Both very good pieces of advice

Just one more thing. Is the HV looking to refer with a view to going into the ASD pathway? Personally I’d what her to refer LO just to rule out any other conditions.

@1995SENNDMUM and @BunnyRuddington thanks both for your helpful replies.

Good point, I understand we won't find any magic door suddenly opening after referral or even a diagnosis. I think I just want to get him into the system asap to have things and appropriate support in place when he reaches school age, if that will be needed, and i know waiting lists are sooo long in my area. I already try to do what I can to support him at home, got Hanen "more than words" book and research a lot to learn best ways of helping DS. But im very new at this and lots to learn. I am in touch with an OT and also considering private SALT or other consultations in few months if needed.

Good shout out about portage, I googled it and have details of local early years inclusion team that I'm going to contact.

He goes to nursery, which he really likes, but so far they claim they don't have concerns about him. I've asked if they can provide any extra support with his communication but not sure they'll agree, as it's probably related to extra resources / funding.

Yes I think ASD pathway should be the way forward when possible, and I'd like genetic testing/ MRI and whatever else is needed to be done, to rule out other reasons for his delays. Can HV put DS on the ASD pathway or can that only be done by a paediatrician?

It's usually a paediatrician who refers to the pathway, so you need that paediatric referral first. My sons non verbal autistic and 4 years old, they don't do MRIs or genetic testing for everyone especially as they've gotten a bit tighter at funding it these days we weren't allowed to have either for him as he had no physical things going on and we have a family history of various things anyway.
You'd have nothing to lose trying the GP now to go over the health visitors head, but they may also have their hands tied until a certain age.

If it's any comfort, we got his diagnosis 2 weeks before an ehcp was agreed for him, so really he had all the minimal support available including DLA, blue badge, specialist teachers and a sen plan at nursery already without having it. He starts at a specialist school in September and actually only one of them would have been an issue getting a place at without his diagnosis sorted, all the other ones in our area aren't bothered.

We paid solely for a private SALT assessment, it was helpful to have that report and also additional advice from them at that time, it was only £200 so excellent value for money. Haven't accessed a private OT as the lowest quote was 1.5k which we can't afford, he's on the list for a charity assessment with brainwave but their waiting list is incredibly long.

I also suggest taking him to the GP but it can be hard to get referrals that early. My DD had obvious gross motor delays but we didn't manage to get any referrals until 18 months and that was only to physio who in turn offered to refer us to the paediatrician. The paediatrician can order basic genetic tests like a microarray but will refer to genetics if they think more genetic testing is warrented.

You could potentially ask to see a different HV or GP. If you're in an area that has drop-in speech and language sessions, you could try those as well.

If you manage to see someone else, I'd do a couple of things:

• Emphasis that he's been in the black for these sections at 9, 12, and 15 months – it's a consistent delay.
• It's a broad developmental delay, as he's also in the grey for a couple of sections.
• Go back through the questionnaires (google ASQ and the age and you can find them all, 2, 4, 6, 8, 9, 10, 12, 14 months) and work out which age he would pass for each section. So he's in the black for 14 month communication. Is he in the white for the 12 month one? How about the 10? And so on. That will help you see how big the delay is, and if you have to go 10 months or before, I'd emphasis that.
• If at all possible, get dad to come with you to the appointment and do some of the talking. Then it's harder to dismiss as 'just an anxious mum'. That shouldn't be true, but if needs must...

Thank you for your replies, this is so helpful
@1995SENNDMUM@wishIwasonholiday10 @skkyelark

Thanks for sharing about genetic testing, I was under the impression that it was best practice to do genetic testing and MRI before/during any autism assessment to exclude any other causes but I guess the funding side of things is the issue so the won't offer this to everyone being assessed for autism. DS is only just starting to walk at 15 months but no obvious motor issues and not currently delayed in this area, just communication and personal/social.

Nursery SENCO agreed to observe DS during May to see what they think, I'm hoping they will put some support plan in place.

I might actually ask to see a different HV as I find the one I've seen before is quite dismissive and patronising and I'd welcome a second opinion. Also a good shout about taking dad to the next appointment as I often feel the "anxious first time mum" label is attached to me whenever I raise any concerns.

No drop in SALT sessions in my area but might get a private SALT assessment at some point. I'm in the process on getting a private Sensory Processing Assessment from OT as DS is extremely sensory seeking which is one of his biggest problems.

DS seems to have recently lost some words and skills he had, which is so sad. On the other hand he is developing some new skills and gestures (like pointing and shaking head for "no") so not sure if this is a regression. It's all very confusing. He did have mostly black scores for those areas in all ASQs but he's making lots of progress which I'm trying to focus on.

Hi @Kstar7 how is your LO getting on?

@Kstar7 any updates on your little one now?