Son with moderate autism- now what?

[doglover12345]

Hi all,
My son has just been diagnosed with moderate autism (level 2 if you're American). He is 28 months old. He does not speak yet, but started pointing a lot maybe 2 months ago.
I know this is projecting into the future... but what now? What does this mean for our family? What does this look like at 3, 4, 5? Will he ever speak? Should I send him to a mainstream school or a specialist school? What would be best for him? We are applying for EHCP and DLA. Positive stories please ❤️❤️

Bump x

My DS is now 12 and has a diagnosis of autism. I remember the early years being very difficult. My DS didn't say a word until he was almost 4. I remember it used to break me hearing other DC his age talking in the park or at nursery. I couldn't take him to playgroups or play dates as he would just scream and cry.

My DS is now fully verbal - in fact he never stops talking! His use of language is always going to be a bit 'unusual' (eg he will talk 'at' you about his special subject of interest) but things are easier now he can explain why he finds certain things so difficult.

There's no 'magic wand' as I'm sure you know but what him helped I think was: Portage. If you're not aware of this service, google Portage + your local authority. In my Dc's case, a lovely lady came round to play with him once a fortnight and give me tips on trying to help his social communication. They work with pre-schoolers.

Nursery. My Ds went to a SureStart nursery (I'm not sure if they're still around now) from the age of 2. This also helped me with my mental health to be honest to give me a 2-hour break a day which made me a better mum. He had full time support at nursery. The settling in was really hard but after a few months, he wouldn't want to leave at the end of a session. The nursery also supported me in ensuring my DS got support for when he started primary.

Speech and language. He saw a SALT therapist every week - and still does even at secondary school. I didn't realise at the time but a SALT teacher will work not just on encouraging DC to use langauge but also on their social communication skills.

My DS is at a mainstream secondary school now with full time support. He has his ups and downs but when I look back to how he was at aged 2, I never in a million years thought we'd be here. He is quite academically able and is expected to take GCSEs - although probably not as many.

In terms of your DS, the fact that he's pointing is hugely encouraging. I know it's hard not to worry about the future but your DS is still so young. With my DS, he took longer to reach milestones like speaking, reading etc but when he got there, it was all the sweeter.
Some DC never gain language it's true but many do learn to communicate in other ways.

Does your Ds go to nursery? If so, what have they said about schools? You have a while to go before you need to make those decisions.

You're doing all the right things in applying for DLA and an EHCP. If you've not seen it, Ipsea is a great resource for EHCP information:

www.ipsea.org.uk/ehc-needs-assessments

Some areas run courses for parents/carers of newly diagnosed DC. They can be a good way of meeting other people in a similar place/sharing tips.

My honest advice would be that the best would be to accept that looking at others journeys will not give you any insight into your own. There is an expression which goes ‘once you’ve met one autistic child you’ve met… one autistic child’, and it’s so true. This is not like a disease with a specific trajectory - it’s neurodivergence which manifests in a zillion ways.

Your child may speak or they might not. I have a friend who’s non verbal son is in school and does great academically. My child is highly articulate but cannot be educated in a mainstream school.

My own experience is that my child (despite loads of interventions) has got exponentially worse as he’s got older - from a child who hit all his milestones and is very articulate to a kid who i could conceive of being institutionalised in future (he’s now 6), and i have friends who’s children i would have said were severely autistic age 2/3 who are now basically normal. Quirky but able to have a normal life.

I say this because i’ve always had an open mind and this has made it easier to accept my son’s journey and keep on fighting for what he needs. His father, like you, looked for answers and reassurance, which he obviously received from
people saying ‘it will get easier, he’ll grow out of it,’ etc, and that means each downward slide has been like another death for him to process. Don’t let that be you, please xxx

Open mind definitely. My DS4.5 didn't speak at 2 but had excellent non verbal communication. We're on the path to a ASD diagnosis. He has a EHCP with 30 hour one to one in reception. We had delayed speech (but with a large vocab, delayed writing and fine motor skills, and lack of social skills). He just about met his 24 month milestones but failed the 36 month ones.

One of the best things we did was get him into a state school based nursery as they did all the running for the EHCP. We've spent a lot of time with him and cognitively he's fine- he adds and subtracts. He speaks in sentences now with reduced echolalia and is interacting with his peers "Do you want to go on the slide?". He writes words with assistance. We are very happy with his progress.

The school however want him out and into a ARP as he can't blend phonics and finds distractive busy environments difficult sometimes. He understands when someone is happy or angry and that screaming makes other people unhappy or angry as he verbalises it to us. He attends after school classes at David lloyds 4 times a week and the staff there all comment on how much progress he's made. For us however difficult it was but getting him out of his comfort zone so he could develop his own coping methods at an early stage is definitely helping. When he can't do something he talks to himself to build a routine in order using his fingers as visual cues. Beforehand he would kick and scream and sometimes he still does.

Don't be afraid to discipline your child in public and of what other parents think.

Our DD 2.5 interacts with him and is ahead verbally so her input has helped (they play hide and seek and do activities together).

Each child is different. Get some professional help but you'll soon develop an instinct for your child better than them.