Worried about my DS, likely autism

[andtheywereallyellow]

I’m struggling to manage my feelings about this. Please don’t come for me, I know other people have it 100 x worse than me.

My DS 3 (4 in January) starts school next Sept. He is likely autistic (we are on the pathway and professionals have said to expect a diagnosis). He’s speech delayed, that is the most noticeable thing. He holds zero conversation. He is a gestalt language processor (talks in chunks of language/phrases). He has lots and lots of gestalts and single words but it’s very scripted.

I’m so worried about his lack on understanding and that he never follow instructions, even such basic ones like “pass me x”. He just doesn’t answer or do anything. He understands routine things like “get in the car / dinner time / bedtime etc”. He can recognise some colours and numbers but it’s not reliable.

He’s had a hearing test and is having private SLT and we’re applying for an EHCP.

School applications open next month and I’m petrified. I can’t see he’ll manage in mainstream but we’ve been told he’s not server enough for a special school.

He shows no signs of potty training. We’ve tried with no luck.

I’m so worried about the future. Will he get a job, drive, live independently? I know these are stupid questions as he’s way too young to predict but it’s on my mind so often I’m struggling to not worry. I’m also worried about how it will affect his 3 older siblings. I feel like they’ll suffer.

Has anyone got any tips on how to manage this?

He babbles a lot. He talks in phrases and single words that are mostly in context but isn’t conversational at all. He will say “come on let’s go” when he wants to go somewhere else, usually the park. He says “water” when he’s thirsty and “mores” when he’s hungry. He can say the names of lots of things. Some of what he says doesn’t quite make sense but is sort of in context. For example when the speech therapist was blowing bubbles with him he said “he did it, he blew a bubble”, repeating something that had been said on Elmo’s World when they were blowing bubbles. He will not make conversation and rarely answers questions unless he’s saying no to something.

The plan is for him to start reception next year, hopefully at the same school. I don’t know if he will stay in mainstream forever but it seems to be working for him right now.

They sound exactly the same. DS had a lot of single words and phrases. Also a lot of babble which I can now usually work out what he’s saying but others can’t. He’s getting good at routine instructions like upstairs to bed, dinner time etc he always does those things. He struggles with sitting still though which I think will be an issue at school. Also potty training worries me, no signs at all yet 😞

It really is! Sorry you’re also going through the same. I definitely do think she is, she’s very textbook as far as signs go.. lots of hand flapping, repetitive play using spinning objects, no awareness of her environment or the people in it. Oral sensory seeker and PICA.

We are awaiting her EHCP, the LA haven’t even done a draft yet and we are already over the statutory 20 week mark.

I also thought about deferring as someone else mentioned but was told there was no guarantee they would just put her in Y1 when she did start which sort of negates the point.

@andtheywereallyellow there isn’t one set criteria for SS.

@peppy23 if you haven’t already emailed the Director of Children’s Services and the Monitoring Officer, try that. If chasing the LA hasn’t worked/doesn’t work, you can look at a pre-action letter.

For mainstream a child should be able to follow the curriculum to at least some extent. It may seem lovely in Reception and even year 1, but by year 3 the gap could be enormous and that's hard. My daughter had to go to mainstream as our LA had no primary specialist provision (this was a while ago) and it got steadily harder for her each year. Imo you are better off with a school with an accessible curriculum, where your child doesn't need a 1 to 1 TA, where there are other similar children to be friends with.