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).

There are suddenly a lot of articles in the press about how autism and adhd are over diagnosed and all these kids are just naughty. Not at all suspicious timing with the government wanting everyone to get behind the sen reforms.

But yes, plenty of children with speech delay are not autistic. One of the kids in my family didn't speak more than 2 words at a time before 4 and is now a perfectly eloquent older child who is not autistic. Just needed a bit more time.

That's interesting. Can I ask what he had and how he is now?

Don't worry about his siblings. I have an autistic sibling. It's taught me and my other sibling a lot about kindness, understanding and valuing differences. You don't know any different from your own family, it would never cross their minds to worry about it.

My DS is 5 with ASD and learning difficulties and at 3.5 he couldn’t really follow many instructions at all and had extremely limited speech. He is a gestalt language processor as well, his speech is pretty decent now, can we have a full conversation? Not yet but I can ask him a question and he will reply, he tries to make conversation now and will go back and forth a little with his younger brother, he can tell me if he needs something/ somethings wrong. Communication is much easier and always developing, he still repeats a lot and has lots of gestalts he still uses but on the whole his speech is much much more typical and I think it will only improve as he gets older.

Whilst he has lots challenges learning new skills, now that his speech is better we are starting to realise that he is actually extremely clever which has been a lovely surprise, he is fantastic at reading, writing and maths (he did 8x9 on his little kids computer the other day and we were gobsmacked). He is only attending mainstream school for 2hrs per day as he just can’t cope in the environment so we’re going through the process of getting a EHCP and hopefully a specialist school place. Considering he spends almost zero time in the classroom, yet he is able to do what he can do is just phenomenal.

There are lots of different kinds of specialist provisions and for me personally I would rather my son thrive in a specialist environment which is better suited to him that also incorporates therapies and learning life skills than watch him struggle through mainstream. There are specialist schools close to me that offer a great education and a really flexible way of learning depending on needs.

What I’m trying to say it’s very hard to visualise the future with a child with SEND but in my experience they are always developing and always learning in their own ways, it’s natural to worry but a lot of it is out of your control. What you can control is ensuring that your son gets early intervention and as much support as possible because it can be a real battle to get your child what they need when it comes to their education and your child will need you to be fighting their corner. If you’d have told me where my son would be now, when he was 3.5 I wouldn’t have believed you.

We unfortunately still haven’t cracked the toilet training but we keep trying and he will get there in his own time. I’ve come to accept that it won’t be like potty training his little brother (all done and dusted before the age of 3) but that it will just happen when he’s ready and I’ve let go of some of that guilt because I know we’re doing our best. School have been fantastic and supportive with this, they are happy to do changes and they also follow the toilet training we do at home as well so encouraging him to sit on the toilet regularly etc. School have seen his challenges and they know that this is something that is going to take a lot of perseverance and familiarity.

We still have lots of challenges around him being dysregulated but I’m hoping these things get abit easier as he gets older.

Do I wish life was a little bit easier for him and he didn’t have these challenges? Absolutely I do but he is so loving and kind and sensitive and he has a wicked sense of humour. His little brother is so caring, boisterous, cheeky and outgoing and they just make the most wonderful pair. We are very blessed indeed.

I was afraid of sen school and then fought for 2 years to get my boy in at age 7 to a ld school. I wish I'd started earlier for a reception start. Mainstream for an autistic delayed child is difficult. He was always happy to go to school and the children liked him well enough but it was a waste of time. They learn specific social skills at sen school which mainstream children don't need to be taught. At sen school he has friends and I don't worry all day about him getting hurt putting something in his mouth etc.

Mine is definitely autistic with a small number of words. He has just been diagnosed at 4.5. There is no way it is something else.

My little boy sounds like yours we have just about managed mainstream this last year has been hard
he starts a special secondary school in September I’m terrified of the future and I still struggle to accept x