Struggling to accept DS 3.5 is likely autistic

[okroger]

Posting here as it’s quiet on the neurodiverse page.

I’ve posted here before but I guess I’m just looking for further reassurance (although still realistic).

I have two older DC 9 and 10 with no ND but my third is looking very likely ASD. He’s a lovely little happy boy but I just can’t keep thinking how different our life might have been if we’d stopped at two DC, especially as the older two are a lot easier now (probabaly in that sweet spot pre teen!) in all family situations I keep thinking about how it would be easier now. It’s like an obsession comparing our lives to what could have been.

I know that sounds awful and I don’t regret having a third (he was very much planned).
I guess our lives are just looking different to what we expected. I also feel concerned it could or already is effecting our other DC.

His biggest most noticeable problem is delayed speech. He finds ways to communicate but speaks in phrases (Gestalt language professor). He’s got many of them and some are very clear but he engages in zero conversation, although he’ll day related phrases to some of what we say.

He struggles with instructions unless they’re routine.

He starts school in sept 2027 which I’m petrified about. I know a lot could change in a year but possibly not enough for mainstream.

He’s having private speech therapy which I believe is helping. He shows no signs of potty training at all. HV said at 3 he was globally delayed.

If anyone else has been in this situation can you help me see what the future could be like? I know of course all journeys are different.

Also aware I sound a bit desperate! (Which I am).

I care for 3 teens who all have global development delays, are all neurodiverse, 2 have FASD, 1 speech impediment and deaf in one ear but who all love sport. I would advise you to try to join him up to the disability sport teams when he gets a bit older. The coaches are amazing and being part of a team with similar problems seems to be very beneficial for the DC. The teens I care for play disability football and disability cricket and so much is put on for them over the school holidays. I have been with them twice last week and 3 times this week. They do 3 days residential trips too for over 12's. They have all made firm friendships they would otherwise not have made and it's helped so much for them being accepted without having to try to change.

The LA didn’t need your permission or agreement to name the mainstream. Even if your preference was a special school, they could have still named the MS in I and forced you to appeal.

Refusal to assess appeals don’t have an 18 month wait.

Personally, I wouldn’t make it clear when requesting an EHCNA that your preference will be SS. Showing your hand too soon gives the LA an incentive to refuse to assess.

Appeal. The threshold for an ECHNA is "may have SEND needs and may need an EHCP". Your child clearly meets this.

98% of SEND tribunals are found in favour of the parents

Is he on the waiting list for the MDA? If not, its worth getting on the paediatric teams radar, they will do an initial assessment and decide whether to put him on the waiting list and they can arrange straight away for the LEA to put support in place at nursery and the LEA will follow up thats being carried out, its all evidence if you do need to apply for an ECHP.

Sorry to sound like an idiot but what’s an MDA @LivelyGreyShark

Thanks again for replies. I’m a bit confused about EHCP stuff. Not sure yet whether he needs a special school. His SLT and nursery are saying not (or at least not for reception).

Also we want a special school but also need a preferred mainstream what do we do then? Can you put both??

An MDA is a multi disciplinary assessment its made up of the ados test, reports from nursery, SALT, observations by the paediatric team and together the professionals led by a consultant decide if a diagnosis of autism or something else is appropriate. Honestly if you haven't had a GP referral to the paediatric team then its worth getting one.

They will kind of expect you to try mainstream first unless he is very severe but I know children with severe autism who had to start mainstream first. You won't get a special school without an EHCP.

So do you have to request an MDA or is that part of an assessment process that a professional would advise?

Thank you both. I have a feeling he’ll be too behind for mainstream but not severe enough for special. At the moment he has no behavioural issues and is actually very laid back and happy. Of course this could change!

We have been referred for a paediatric assessment but now awaiting an appointment. We had an initial appointment recently but now an 8-12 month wait until the next one.

I’m going to start the ehcp process soon to get things moving. It gives us a year before school then. So I’d assume we’d apply for mainstream and go from there.

I do worry about his understanding. Although I’m not sure how much is just him not doing it if that makes sense. If I ask him to put something on the table he will absolutely not do it or even respond. The same with point to an animal or colour etc. but he does know other stuff like time to go, dinner time, to the shops, get in the car etc. and he seems to have a good memory remembering places we’ve been so who knows!!

The assessment process differs in different areas. If you have been referred for assessment, you don’t need another referral.

EHCPs aren’t just for those in special school. You don’t need to know if DS needs a special school yet either. Despite what some LAs say, those with EHCPs, don’t have to try MS first.

Request an EHCNA now. Unless you have a finalised EHCP by the deadline for normal applications in January, you should make a normal application just in case. You may not need it but better to have applied and not need it than not apply then be left needing to make a normal late application.

They will probably decide at your next paediatric appt about whether to do the assessment.

Just thought I’d add to my original post that in the 8 days since my comment,DS is now using happily using the potty! It’s not the toilet but it is a start and just goes to show that children will often do things in their own time. We tend to find that for DS progress comes in stages so we will have a few months of the same then a couple of months where he’s really developing and progressing like a cycle, it feels like he’s just processing life at his own pace really

Many years ago I was in a very similar situation and was adamant I wanted my daughter in mainstream school.The educational psychologist said that people are really scared of special school but sometimes the child will fare better as a normal child in a special needs setting where all the teaching is relevant and and specialist support available than being “different”in mainstream where their peers will often overtake them and they might struggle to make friends

@changedusername190 thank you, such good points. I guess it’s the unknown I’m scared about with regards to special school. I’m so new this the SEN world, I’m finding it really overwhelming to work out all the processors and even just the acronyms are confusing!

Really just want what’s best for him though 💙

@PeanutCat1 wow that’s amazing progress! I know what you mean, my DS is the same and going his own pace. Seems to be usually about a year after typically expected at the moment x

My autistic son is nearly 5 and with each year things have gotten easier. He now has full speech, although not always great at communicating, he is toilet trained , sleeps in his own room and starts mainstream school at the end of the month. His main difficulties now are sensory issues and regulation. His motor skills are also delayed but that is now more than likely due to dyspraxia. My advice is keep going with the speech therapy and try and see an ot. I found 2/3 the most difficult ages

@romdowa thank you. I’m glad things have improved for you your son. Sounds like he’s doing great.
can I ask what his understanding was like at 3.5? I’m panicking again today. Just feeling like he’s so behind 😔 he can’t even point out a colour. Doesn’t even respond.

It’s possible that he understands far more than he’s able to communicate. My son wouldn’t be able to point out a colour either. Until recently I thought he had no concept of what colours are. The other day he randomly brought me a purple stickle brick and confidently said ‘purple’. He wouldn’t be able to communicate to me which colour was purple if I asked, but he clearly does know.

I think just changing how you see their future postively can help. My DD is very bright but her future will be in a practical career not something like law or one needing high academics such as medicine due to her neurodiversity. I work with loads ND people in civil service.
If confirmed ASD then focus on the cans not the can nots

@Strawberrycheesecake7@ifonlytheydlisten
thank you. He probabaly does know what I’m saying. It’s like he’s too much his own little world to focus. I’m not sure what’s happened to me today. I’m finding a pattern where I’ll go a few weeks feeling ok ish and positive and then I drop off a cliff for a few days and only see the negatives. Thinking rationally I know he’s making progress even if it’s small things.

Comparison is the thief of joy too. He’s very young still

I remember when DS was 3 I was terrified he would never be able to communicate, he was stung by a wasp in the garden and wasn't able to tell me where it hurt because he was non-verbal with no understanding of language or communication, thankfully DD saw - my point is I was so scared for his future, but it turned out better than I could have hoped for. My DS could not have pointed on demand let alone pointed out a colour at 3.5, but around aged 5 he really started to catch up.

Hi OP, I know exactly how you feel- I am going through the same cycle with my little one. She sounds similar to your son, except she already has a diagnosis. I try to remember she's so little still and she is making progress even if it's not the same as a neurotypical child at the moment. It's the apparent lack of receptive language and what I am saying that worries me the most, but so many people have pointed out that she probably does understand a lot more than I realise xx

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So true! I need to be better at catching myself doing this