Would we get an autism assessment referral at 20 months?

[AutumnLea]

This will be a long one as I'm going to type out all my concerns for context.

TLDR: want advice whether to take this to GP tomorrow and ask for a referral or wait a bit longer as DC is so young.

Behaviour

Frequent long episodes of shouting.
General aggression when upset.
Overwhelmed by busy places, loud noise, other children.
Copies sounds but no inclination to form any words.
Will only watch one thing on tv.
Will only play with 2 specific toys, everything else is bitten then thrown, unless a soft toy which is carried in his mouth.
Understands things by putting them in his mouth and biting (including people)
Hangs tongue out a lot
Obsessed with screws and wheels
Becomes distressed if strict routine is disrupted
Won't sit in pram if it's still
Struggles with bathtime, getting dressed, nappy changes

Development

Crawled 16 months
Pulled up 16 months
Cruised 17 months
Walked 19 months
(Nb. These developments all happened as soon as I took him out of nursery at 15 months)
No speech
Doesn't respond to name, point or wave
Often lost in his own world

_Sleeping
_
Never sleeps longer than 6 hours
Gets up in the night for 2-3 hours
Always wakes at 5.30am for the day
( Nb the above is true regardless of any routine we try)
Will only fall asleep holding my hand

Eating and drinking

Will only eat mashed baby food spoon fed by me
The exception to this is a couple of specific snacks but you have to give him one piece at a time, if you put several pieces down he will pick one and throw the rest
Will only drink from a bottle, has regressed from cup
Will only drink milk, which I dilute with water
Stopped eating at 8-9 months when nursery started and only was fully on solids at 15 months when I took him out

And that's all I can think of. Does it sound like autism and shall I put all this forward tomorrow and see about a referral? Any tips?

Thanks and super thanks if you managed to read it all.

Just to add, also obsessed with lights. Lights and interesting sounds. Will try to whistle or copy a wildebeest or something but absolutely no words whatsoever. I'm sure there's more I've forgotten.

You may not get a referral specifically for an autism assessment, but I think you will get a referral somewhere e.g. a more general referral to community developmental paediatrician &/or SALT.

Definitely go to your GP with this list. An ASD assessment is taking up to 3 years where I am at the moment - so if you get 'in the system' now, you could be looking at aged 5 before he's seen.

Different areas have different pathways to get on the list for an assessment though but hopefully your GP will be able to advise.

What has your health visitor said, have you spoken to them with your concerns? (Some are great, some not so - mine was useless.)

I would be really pushing for a speech and language referral, urgently. My DS was given speech and language therapy from 18months as he was completely non verbal. This was some time ago though and I know wait times sadly are much longer now.

Also ask about Portage. We had this for DS and it really helped. (It's a kind of play based therapy for pre school DC who are showing developmental delays.) I'm not sure if it operates in all areas though.

Have you seen the M-chat test? (You can google it.) It's a basic screening test for possible autism. It can give you an idea of the kinds of things to look out for.

Thanks I will contact GP in the morning with it. HVs are flaky around here, perfectly nice but just not that great, decided early on to stick with GP advice. I'll mention SALT and portage and see what they say. I do vaguely remember going through the M chat some months ago, he wasn't walking at that point and I can't remember what it said. I'll have another look. Thanks again.

In some areas you can self refer for an ASD assessment and SALT.

Good that you are seeing the GP who can hopefully make some relevant referrals.
Look at the Local Offer online for your authority. There will be an Early Years team and should be an SEN specialist.

There should be additional funding for 2 year old provision if your child has delayed speech or additional needs. There is Early Years Inclusion funding that can be applied for by a setting.

Early Years inclusion funding isn’t available to 2 year olds in all LAs. In some LAs it is only available for 3 and 4 year olds.

Thanks @Relaxinghammock

I've just checked and it looks like you can't self refer for ASD but unclear whether or not you can for SALT. I've found an online form and will call the number on it tomorrow to clarify.

Thanks @24Dogcuddler I'll have a look for the early years team too.

An update to this and just wondering if my experience is normal?

Contacted gp the next day to ask for referral (17 July) and got an appointment for august 24th. Went to appointment and referred to community paediatrician.

Contacted by gp today to say speak to hv. Gp didn't seem to know what he was talking about (ie kept saying go through 'health sister') so called paediatrician office direct.

They said we should never have been referred there but to a different office. Gp does that so call them back.

Called back and they said they don't make referrals anymore and to contact hv.

Can't for the life of me get through to a health visitor on the phone and now almost 3 months in no idea what to do next? Very upset that nobody seems to know what's what. Is this usual?

Go back to the GP (via the practice manager if necessary) and keep pushing. Also persevere with the HV, do they have an email address publicly available?

Well the GP say they don't have a practice manager, nobody there seems to know what they're doing. There's no hv email address I'll just have to keep calling. I've emailed the place the referral is supposed to go to and asked what they suggest I do since you can't self refer. It's just a nightmare. Thanks @Relaxinghammock

The GP will have a practice manager. You could contact the ICB.

Ok I've had a look an it seems they have a senior management team. Of the 5 of them the risk and compliance manager seems to be the one to contact. Or alternatively yes I've got contact details for the icb. Not sure which one to go to, I think maybe icb.

Apologies if you've already done this - but have you googled 'autism assessment referral' and then your council's name?
The pathway should then come up. If it is via your GP, print it out and then go to your GP and show them.

You could ask the GP for a referral to a dietician, given your DS's eating concerns. (My DS was similar.) I'm just thinking that another specialist expert may be able to 'side refer' you on to the right team for an autism assessment. I ended up being referred by my DS's speech and language therapist as my well-meaning GP was pretty clueless.

Thanks @Toomanyminifigs

We are on the waiting list for speech and language and yes the paediatricians office confirmed the the GP can make the correct referral, they are just refusing to because they "don't do that anymore".

I've posted a four page letter to the chief executive of the integrated care board this weekend so I'm hoping to get somewhere with that 🤞🏻

So, a little update, a month after I sent the complaint I hadn't heard anything. Contacted the ICB chief executive's office to chase and was told it had been passed to PALS.

About a week after that I got a letter from the regional complaints team to say it had been passed to them and wanting me to sign a consent form so they can investigate.

It has now been:
Four months since I raised with GP
Three months since the GP made the incorrect referral
6 weeks since I made the complaint which should have been acknowledged within 3 days (according to their policy) and which I am now holding out very little hope for.

At this point would it be too much to contact my MP do you think? I just don't know what else to do. He's never going to get this referral which everyone says he needs but just won't do.

Sorry to keep resurrecting the thread I just had no idea something so basic would be so difficult.

Have you chased the complaint? Although it sounds like the complaint has been acknowledged. The 3 days doesn’t mean a full response within that time and at least 6 weeks is quite normal for such a full response.

I did because I hadn't had an acknowledgment after a month. Yesterday I had the acknowledgment and a form to consent to an investigation. Nothing has even been started yet after 6 weeks

To clarify the acknowledgment took 6 weeks, the investigation has not yet begun

I meant have you chased the complaint since it was passed to the regional complaints team but from your reply I now see you only got that form yesterday. If it has only just been passed to them, then I wouldn’t expect a response from them yet and contacting your MP at this stage is unlikely to change that because they haven’t had it for 6 weeks and done nothing. They need to be given time to look at the complaint, investigate, respond.

Thanks, I'll give it 6 weeks then. I'm not expecting much to happen as I've asked them to confirm they've received the consent form and they haven't, could be looking at another 6 weeks just for that

Give them chance, you only got the consent form yesterday, so can only have given them 24hrs at the very most to respond to you asking them to confirm they received your response.

I know it's just been dragging on for so long and nobody seems to care it just gets passed around indefinitely. So disheartening when I know he won't be able to go to nursery next year or even school without some kind of documented evidence for an echp, which without so much as a referral, we will just never get. I feel like we're being really let down and this is just the beginning 😢

Support in nursery and school is based on needs, not diagnosis or referrals. You can request an EHCNA yourself.