Concerns About Nearly 3 Year Old Son

[Sportbilly]

Hi All,

A worried Dad here. My son is nearly three and is displaying some worrying signs. He hasn't said even one word yet, and has some strange behaviours (lots of arm flapping and shouting in excitement). These seem like autistic traits but then he's a lover of hugs and physical attention which seem to be against the standard autism traits?

We feel he can communicate with us without words (bringing a bottle when wanting milk for example), but we don't feel he understands when we try to communicate with him.

At his last health check he was referred for a hearing test (all fine), and we're now awaiting for a referral/appointment for an autism check or tests.

I guess I'm not asking anything here, but as the waiting is horrible, wonder if anybody with similar experiences would care to offer any views or advice here please.

Hugs and physical attention aren’t against standard autism traits some Autistic children so be sensory seeking meaning they like hugs, they can also be really affectionate

I have a dc with autism he displays all the signs you've described including being super tactile but that doesn't mean your DC has autism.

Hi OP,

Does your son attend nursery? Do they have similar concerns?

It could be worth talking to your GP as well. Both the GP and nursery can refer onto other services or a diagnosis if necessary.

I don't know where you live in the country but if you search 'local offer' and your county there should be advice on SEN/ASD and where to get support.

You can also look into your local children's centre and the health visitor for support. Again google them with your area and get in contact.

There is also the National Autistic Society, they are nationally based so not always helpful.

Hope there is enough support there for you to access. Let me know if you need anything else.

Do you have involvement from SALT? At 3 with no words I would expect them to be involved. You might be able to self-refer, or your HV should be making them aware of you.

I was just about to ask a similar question. Surely this was picked up at his 2 year check and he was referred to SALT?

No, he was only referred to SALT at this last check (2.5) and we've since been working for his referral appointment.

He doesn't attend nursery (finances mean it's easier for one parent to stay home with him).

I had a similar issue with my 3 year old - My concerns were validated (in the eyes of HV and SALT) when I mentioned nursery also had some concerns (which was only mntioned when I asked them if they had noticed certain things).
It took me 14 months to get my first speech and language consultation and we are just starting the process of assessment. SALT go into my daughter's nursery to do her speech therapy / check ups which is easier as they can do all the children in the area in one go and may mean we aren't waiting as long.

At 3 he is entitled to 15 hrs free even if your partner isn't working, which may help with speech and they will also have a SENCo who can refer you for assessment if needed and give you more information.

If you feel something isn't right always keep pushing to be heard as you will know best! It is better to get things started before he starts school so that things will be in place and they will be ready to meet his needs straight away. Hope this helps.

I’m a special needs teacher and definitely support the idea of him accessing the 15 free hours. Try to find a school with nursery attached or local authority nursery or if none available ask the nurseries specifically about SEN as private nurseries can be more mixed in terms of knowing how to tap into local services and assessment pathways. Really crucial to have all the support he needs in the early years as this is when intervention will have the biggest impact.

Latest is that my son is now approaching 3.5 years old and has had a formal autism diagnosis from a private clinic in Poland (my wife is Polish).

Thankfully the UK system have accepted this diagnosis, and we're now awaiting his case to be heard at the early years forum next month to see if the nursery can get some funding to have some more focussed one to one help.

He's been in nursery two months, and it's clear to all that he definitely needs some specialist support. He's a lovely boy but when I see his peers I realise how so far behind he is in every area of development. It's quite upsetting to be honest.

He's still completely non verbal, and without wanting to diagnose by internet, the more I read about apraxia, or certain types of it, I'm more worried he may have this with the autism.

We've also applied for disability living allowance, but not sure if we'll qualify or not. We feel bad for applying as I earn a good salary, but at the same time we've started with private therapy sessions and it's had an impact on our outgoings.

We're trying to stay positive but at this point I worry of my son will ever speak or be able to go to a mainstream school.

Perhaps too early to have these worries, but we can't help it.

Has he been referred for the autism assessment. My adult son is profoundly autistic and is very affectionate and loves hugs/cuddles. Autism assessments can take a long time. It might be worth seeing if you can self refer to portage (something I didn’t realise I could do when my son was little, so we waited longer than we should have for intervention).

There is someone posting with similar concerns this morning - might be worth DM-ing each other. In the early days of worrying what was wrong etc other parents were such a support.

Thanks for the reply. I'm not sure if he's been referred, all I've been informed is that because we've had a formal diagnosis from a specialist autism clinic I'm the EU, that the UK recognise this diagnosis.

Not sure what that means in practical terms, as I'm still learning the system and protocols.

Definitely apply for DLA, it isn’t means tested so your income isn’t a problem. Also, if you haven’t already, get the ball rolling with getting an EHCP in place.
Has your SALT therapist suggested PECS or any other communication tool? My dc has used pecs for 4-5 years and has just started using Proloquo2go on an iPad. They are 9 and still non verbal but less frustrated as they have a way to communicate that works for them.

If he has a recognised diagnosis I would be looking at nursery with additional support or portage or maybe both. Either will get you in the system.

Absolutely get the ball rolling on an EHCP now - if you have it before you're applying for primary school places then it makes things a lot easier than if you wait until he's in school to apply.

Start ehcp process now it takes ages

As well as early years inclusion funding apply for an EHCNA. IPSEA have a model letter you can use on their website - IPSEA and SOSSEN have lots of helpful information on their websites and both have advice lines.

If DLA is refused ask for a mandatory reconsideration and appeal if required.

Thanks for all the inputs, really appreciate it.

Maybe I need to read up more on this, isn't the early years forum the start of the process for a potential EHCP plan?

I assumed that if the early years forum give the nursery funding, that starts the EHCP process?

If not, what's the best way to start that process please?

We've not had anybody advise anything in terms of PECS or another communication tool.

In fairness we've only had the formal diagnosis in the last few weeks, next step is the early years forum in 3 weeks.

The early years forum will be a local arrangement, but it is more likely related to early years inclusion funding which is separate to EHCPs. Being in receipt of early years inclusion funding doesn’t automatically trigger the EHCP process.

You need to formally request an EHCNA. IPSEA have a model letter on their website you can use to send to the LA.

Ok great, that's clearer. Thanks for the advice ❤️