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Here you'll find advice from parents and teachers on special needs education.

Original poster

Would we get an autism assessment referral at 20 months?

29 replies

AutumnLea · 16/07/2023 13:48

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.

OP posts:
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Original poster
AutumnLea · 09/11/2023 12:40

Relaxinghammock · 09/11/2023 12:15

You will need evidence of needs, but you do not require evidence of diagnosis or referral. The legal threshold for an EHCNA is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Anything else is unlawful.

To gather evidence you could make SARs to the GP and HV, including the information in the incorrect GP referral. You can make a SAR to DS’s previous nursery. If you can, you could look at self referring to SALT, OT, Portage, then use that information. Do you attend any organised play groups? You could ask if the organiser will write a supporting statement. Do you have any SEN sessions locally that you attend? If so, you could ask those organisers.

Have a read of IPSEA and SOSSEN’s websites. The process will be easier for you if you understand the law behind EHCPs rather than believing what the LA tell you. LAs often act unlawfully. Do not believe everything they tell you, check everything. Be careful with SENDIASS. Some are good but far too many repeat the LA’s unlawful policies.

This is brilliant thank you 😊

I will work my way through it

OP posts:
Relaxinghammock · 09/11/2023 12:15

You will need evidence of needs, but you do not require evidence of diagnosis or referral. The legal threshold for an EHCNA is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Anything else is unlawful.

To gather evidence you could make SARs to the GP and HV, including the information in the incorrect GP referral. You can make a SAR to DS’s previous nursery. If you can, you could look at self referring to SALT, OT, Portage, then use that information. Do you attend any organised play groups? You could ask if the organiser will write a supporting statement. Do you have any SEN sessions locally that you attend? If so, you could ask those organisers.

Have a read of IPSEA and SOSSEN’s websites. The process will be easier for you if you understand the law behind EHCPs rather than believing what the LA tell you. LAs often act unlawfully. Do not believe everything they tell you, check everything. Be careful with SENDIASS. Some are good but far too many repeat the LA’s unlawful policies.

Original poster
AutumnLea · 09/11/2023 11:38

I've just called the echp team, who said they would need evidence ie. Reports etc. they have advised me to contact SENDIASS for advice. Can't get through at the moment but that will be my next step I think. Thanks @Relaxinghammock hopefully we'll get there

OP posts:
Original poster
AutumnLea · 09/11/2023 11:13

Even without any evidence at all? How will they know I'm just not making it all up? @Relaxinghammock

Sorry to keep bugging you this is all new to me

OP posts:
Relaxinghammock · 09/11/2023 11:08

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

Original poster
AutumnLea · 09/11/2023 10:33

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 😢

OP posts:
Relaxinghammock · 09/11/2023 10:27

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.

Original poster
AutumnLea · 09/11/2023 10:14

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

OP posts:
Relaxinghammock · 09/11/2023 10:11

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.

Original poster
AutumnLea · 09/11/2023 10:03

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

OP posts:
Original poster
AutumnLea · 09/11/2023 10:01

Relaxinghammock · 09/11/2023 09:36

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

OP posts:
Relaxinghammock · 09/11/2023 09:36

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.

Original poster
AutumnLea · 09/11/2023 08:35

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.

OP posts:
Original poster
AutumnLea · 01/10/2023 16:37

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 🤞🏻

OP posts:
Toomanyminifigs · 01/10/2023 14:54

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.

Original poster
AutumnLea · 29/09/2023 18:20

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.

OP posts:
Relaxinghammock · 29/09/2023 18:09

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

Original poster
AutumnLea · 29/09/2023 18:08

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

OP posts:
Relaxinghammock · 29/09/2023 17:59

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?

Original poster
AutumnLea · 29/09/2023 17:37

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?

OP posts:
Original poster
AutumnLea · 16/07/2023 14:48

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

OP posts:
Original poster
AutumnLea · 16/07/2023 14:44

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.

OP posts:
Relaxinghammock · 16/07/2023 14:43

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.

24Dogcuddler · 16/07/2023 14:42

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.

Relaxinghammock · 16/07/2023 14:32

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