My 2 year old non verbal little boy referred by nursery where to start ASD diagnosis

[Whhhhaaathe]

My little boy is 2 and 4months - he started nursery at Easter 1 morning a week. He doesn’t speak any words and we thought speech delay and have been referred for speech therapy. We are just sorting out private speech therapy as the wait list is so long.

last week we had our first review with the nursery staff who brought up his speech and we agreed speech therapy was the best place to start. I was then asked to attend a catch up meeting and this week and they have said that they are now concerned about social and communication skills as well as his speech and would like to refer him for an assessment. They brought up things like he doesn’t engage in pretend play, he doesn’t answer to his name, he doesn’t follow requests like “get your coat”

since then a lot of his behaviours have now made a lot of sense and we believe he has ASD.

he runs away, often into/towards danger
he goes around on his tip toes at home
he hums when running around
he doesn’t like people talking to him other than mummy, daddy, Nana and will either cry or avoid
he is very sensitive to noise - hand dryers, hoover, even his baby brother making any kind of noise

can anyone recommend where we start - with regards to getting a diagnosis, any therapies that are available, any funding available, any tips or anything really? We have found ourselves thrown into a world we know nothing about and it all feels very overwhelming. We just want these best for our son which means his parents educating themselves.

TIA

It sounds like you're being really on the ball with this. I would say early intervention is really important. It's sad that there's now such a wait for speech and language therapy on the NHS.
Look into 'portage'. I don't think it operates in all areas though. This is a type of play therapy for preschool DC who are displaying developmental delays.

Different areas have different pathways for an ASD diagnosis. What's your relationship like with your health visitor? Has your DS had his two year check yet?
They may know. You could also make an appointment with your DS's GP (you don't necessarily have to take him.) Take the list of concerns you've written above.

I have to warn you, in my area the waitlist for an autism assessment is around 3 years.

The nursery sound like they're proactive too, which is great. They may be able to apply for additional funding to help support your DS.
If it's appropriate, they could support you if you decide to apply for an EHCP.

There's some good info here about what an EHCP is, how to apply and the legal responsibilities of schools/councils etc:

https://www.ipsea.org.uk/Pages/Category/get-support

You could also look at applying for DLA. (You don't need a diagnosis - it's about need.) The form is pretty hideous but there's good help/info here. The extra money can be used for therapies for your DS or anything that helps improve his life:

https://cerebra.org.uk/download/disability-living-allowance-dla-guide/

To add to Toomanyminifigs’s excellent post.

In some areas ASD assessments are via CAMHS, in others they are via community paeds, in others they are via a standalone team, and in some it differs depending on the age of the child. In some areas you can self refer, but as the nursery is offering, you could let them do the referral.

Have you looked at the M-CHAT? That will give you an idea of the types of things that are considered when looking at ASD.

What support is the nursery currently providing? If they need advice on how to support DS, they can ask the Area SENCO for advice. Support and funding in nursery is based on needs, not diagnosis. If necessary, you can request an EHCNA - IPSEA has a model letter you can use. IPSEA and SOSSEN are charities that support parents with SEN matters and they are a good place to start to begin to understand the SEN system. In some areas, nurseries can apply for Early Years Inclusion Funding if they need more funding to support children aged 2. However, in other areas they can’t until 3.

SALT, OT, physio, play therapy can help. If DS goes on to get an EHCP, they can all be provided via that.

Some areas no longer provide portage to those in nursery, sadly.

Have you tried ear defenders?

@Toomanyminifigs thank you for this,

myself and my partner are trying to get our heads around everything and it seems like such a lot of information as well as things we have never heard of before and so many acronyms! I am trying to write everything down and keep it in a notebook. It just seems so difficult to find out who deals with what, who refers for an assessment, who do I need to speak to about this and that etc, etc.

I have seen some information regarding portage and have a local portage provider- I will contact them on Monday and find out how I go about getting this arranged.

The nursery have said that he has been accepted for an “intergrated review” and is in the waiting list - I’m not sure if this is an assessment for ASD or not and they haven’t explicitly said that’s what it’s for so I don’t actually know where we’re at with that? (It may be that they just didn’t want to say it to me I’m not sure?) anyway I will contact the HV and see where we are at. I have only seen the health visitors (different ones) at 10months and 2years 1 month - they had referred him for a hearing test and he’s had that and all fine. So I thought speech therapy is next but now me and my partner have looked into ASD we know that this is where we are with him.

I think we are going to look at getting a private assessment as well as going on the waiting list with the NHS as it looks like it will be a long wait. Can you access all the different therapies without the diagnosis?

I’ve also got DLA in my list of things to look at.

@OvertakenByLego yes I did look at M-Chat and the score was 15.

so he doesn’t currently eat at nursery which is another concern. I am paying for him for the whole day as well as lunch and still having to pick him up after lunch time as he won’t eat. So this has been fine because I know how fussy he is with his food (which seems to be getting worse) but just assumed it was a phase (he had a sickness bug in May for 4 days and seemed to have got worse with his eating) so I discussed with the nursery things to try. We still put him in a Highchair as if he’s in a seat he will not sit there long enough to even think about eating. So they have said they will get him a Highchair. I also said that he doesn’t usually eat the kinds of things they are serving at lunch (tomato dahl, vegetable soup) I can get him to eat a sandwich an oat bar and a fruit pouch at the moment, so suggested maybe try something similar or I will happily provide a packed lunch - they have said they will speak to the manager about it? They have also said he has a 2nd key worker who is a SEN coordinator but I’m pretty sure she said to me that she doesn’t work on a Thursday which is the day he is there?

I will look at the other things you’ve mentioned too. He won’t wear anything on his head at all.

If you google your area and ASD assessment, you should be able to see which team assesses and how to be referred.

Would DS eat a packed lunch in a quieter room? Have a look at ARFID.

With an EHCP, therapies are based on needs, not diagnosis. Without an EHCP, therapies can be accessed via the NHS with or without a diagnosis, but what is available will be more limited, there will be a waiting list and e.g. not all areas commission sensory OT on the NHS anymore, so it is preferable to have them included in an EHCP.

I don't have any great tips for getting support through formal routes yet - more than two years in and I'm still flailing around trying to get anything from anybody and the support we do have is private. 🙄😡But it sounds like you have a supportive nursery though and you're clearly on the ball yourself so well done - there is so much you can do to help your DS do well at this age!

One thing I always recommend is reading the book An Early Start for Your Child With Autism. It outlines play based approaches parents can implement at home to support social communication at the age your DS is now because - at least in our case - that needed to happen before speech therapy because our DS just simply wasn't saying very much at 2.5yo and there wouldn't have been much for a speech therapist to even work with. It was our first step in looking at communicating and interacting with him differently and it made a huge difference in those early days, opening the door to much better engagement and eventually speech (he barely said a word at 2.5 but at 4.5 is chattering away and singing almost non stop throughout the day, though with some echolalia still in there, and understands most instructions even if he doesn't always follow them!)

@Scratchybaby thank you for your response- the system is so confusing (well I’m finding everything about what’s happening at the moment very confusing) and I already feel like I’m banging my head against a brick wall!

I will add the book recommendation to my reading list! I’m currently half way through Autism : how to raise a happy autistic child. I’ve found it very insightful.

I’m glad you found some things that worked for you, I’m really hoping I get to hear my little boys voice soon 🥰

This is the second time now that I've seen that How to Raise a Happy Autistic Child book recommended - I must get that one!

I'm really find that, although getting the right supports in place when they're in a nursery/school setting is important, so much also revolves around what you (us - as their parents) do in understanding them and working with them, building on their strengths and really being their ally and advocate and biggest cheerleader for what they are great at, rather than trying to force them into any sort of box that they just aren't designed for.

But yes, my DS was so much like your description of yours at that age and he's making amazing progress every day with his speech. There are still challenges and I have no idea how the hell we're going to manage school yet, but he's also got some really impressive little talents, a marked interest in learning to read, and I get to hear his beautiful little voice all day long now. Loads of reasons for you to be optimistic too ❤