Autism maybe but school nursery just brushing it off

[Paddingtonsmarmlade]

My is ds 4.5 now

-didn't babble at 12 months
-had 20 words by the time they did his 2 year check (at 28 months) but they signed him off a few weeks later as he'd jumped to 50
-still wasn't talking in sentences at the start of lockdown 1 at 3.5 went back in July (3.8) and new nursery teacher noticed speech delay but was told by other workers that he was much improved
-now speaking but whether to an appropriate level I'm not sure as I haven't been around many other children his age in a long time
-never pointed at what he wants but would climb/'ask' to be lifted to get it.
-doesn't follow a point
-often described as a 'lively boy'
-really struggles with eye contact
-really really struggles with new people or people out of context
-has to have matching cutlery to plate and younger sister has too as well otherwise he is on the floor floppy
-can't cope with messy food on his hands, but will use his hands to eat but then panics and demands a wipe.
-new situation/routine changes throw him off. Example he loves nursery but had 2 weeks isolation due to positive case and the next 2 weeks of nursery he was prized off me screaming everyday. Never had that before. Still to this day he doesn't do well if his favourite teacher isn't at the gate at drop off. Will run (leg it) passed the other teacher to find her or hide behind me and has to be taken in/or she comes out to get him.
-Fire drill at school was talked about nonstop for 3 weeks didn't want to go into school as the fire bell is too loud/scary.
-shoe shopping was unbelievable last week. It was almost if he was hyper/wild, Couldn't sit down, couldn't follow instructions. It was almost like there was a block in his head preventing him from listening. He even threw a shoe across the shop. Would only try on red shoes?? Thank god I wasn't there to buy black school shoes.

School nursery is well he is very bright and ahead in many areas,
we don't see those issues here,
we don't allow children to choose the colour of the plate/cup and he doesn't have an issue (he has no issue with his cup not matching only his cutlery)
He had no problem with the fire alarm (change of routine) no you didn't but I was the one at home at 3am discussing the fire drill night after night and having difficulty getting him up the road in the morning
I'll have a think about what techniques we could help you use
Lockdown means that children have been allowed to get away without having many expectations on them as they've been mainly home
Parenting course might be useful

So does it sound like he might be on the autism spectrum? What do I do? School suggested early help hub which referred me to health visitor which tried to refer me back to early help so then suggested gp. Feel like people are deflecting until I give up Gp is like trying to get an audience with the queen at the moment Or suggesting it's bad parenting so I get embarrassed and go away.

Yes he definitely sounds like he could be. Each area differs regarding assessment help but usually school can speed things up assessment wise. Have you spoken to the the Nursery Senco?

I'm not sure who that is, if they have one. It's a tiny village school with attached nursery there is 50 odd kids in the whole school.

Yes I agree, and how frustrating Nursery are not listening to you. Anyone with asd experience will know children with asd often present differently in school to that of home. I have seen it myself in school and how easily it can get overlooked or missed, by busy staff or inexperience. Then you deal with the fallout at home as they release all the pent up anxiety of the day. Your shoe experience was me with my eldest, we ended up going to an independent with a fabulous lady who didn't interact or flinch at the screaming and kicking, just got on with it. I was so grateful to them for the sheer lack of fuss!

Ask for a meeting with the Senco and present your list of concerns with examples of what you deal with at home and insist on a referral. Also worth looking at the National Autistic Society website, lots of really good advice and how to get help.

Ask at the school office who it is and to book an appointment. Every school has to have one and it could be one of the teachers or Deputy for example.

Yes if the school doesn’t have their own SENCO, there will be an area SENCO you can meet to discuss your concerns. If they aren’t taking you seriously, get in touch with an organisation called IASS (formerly parent partnership) who will give them a kick up the bum for you! There are IASS branches everywhere.

I have to say the shoe shop was amazing. It's family run and father is in his 70s and has a way with children the daughter is also brill and has child with autism. They couldn't find the second red shoe been put back on the wrong shelf. Youngest needed the potty so she said you pop off and do that and we'll of found it by the time you're back. They had managed to find them, got them straight on his feet and quick check and done. They even managed to make me feel like I wasn't the worse parent in the world.

I think I need to sit down and write down everything that we have issues with. Unfortunately lockdowns have meant a lot of time at home and the issues fade more into the background as life isn't as challenging.

You need to prepare yourself this is exactly what my sister experienced from reception she eventually got a proper assessment in year 5. Was turned down for an EHCP after that, appealed for EHCP and got that at start of year 6. Then got turned down for funding to in year 6, appealed got funding at the end of year 7. Lost most of year 8 to corona. Had funded TA taken away in year 9 to provide catch for other children.

This is my worry that he’ll struggle through school but because he isn’t behind academically (well isn’t at 4 anyway!) he will be the ‘lively’ boy always said with a tone rather than investigative and putting in place things to help him.

Can you afford a private assessment?

Early diagnosis, intervention and continued therapy is the best chance for positive outcomes. Whatever the issue.

NICE gold standard is a Multi Disciplinary Team approach for assessment and diagnosis.

• Clinical psychologist - specialism in ASD & related conditions & Specific Learning Difficulties
• &/or paediatrician - depending on any medical issues
• SALT (speech & language therapist)
• OT (occupational therapist)
• GP - general health check
• Behavioural Optometrist
• Specialist hearing check

I can offer a recommendation for East London.
Only a clinical psych (or psychiatrist) can offer the full battery of ASD testing.

The problem is the MDT approach is expensive. What you tend to be offered is the gradual ladder of escalation.

You’ll need the hide of a rhino and the staying power of a terrier.

I doubt we could afford it, we live in Cornwall so we are often a long way from things. How would I go about looking for someone (decent) that could do a private assessment?

It does sound like autism is a possibility in my experience.3

My son was diagnosed with autism age 3 through a private organisation called The Owl Centre.

They were brilliant and very thorough, they involved us parents every step of the way and ensured we had time to give our experiences and thoughts.

We were very lucky that his school nursery arranged and paid for the assessment as they could see he needed support and really felt that an early diagnosis would be worth while. The two year wait list for an nhs assessment would have been detrimental to his progress they felt.

I would go to your GP and ask for a referral process to be started if school aren't being supportive or willing to make arrangements.