I think the stage of dx is something too. DS1 got his official dx (autism) at 3.2; I self-referred for SALT at 22 months and he was referred for neurodevelopment appointment at 2.3 by a paediatrician in audiology (hearing test was routine part of SALT referral) who thought it would be worthwhile. So glad that paediatrician was on the ball! But does mean from referral to diagnosis was 11 months.
DS1's 'flags' included:
- delayed communication (babbled but no real words, the few he had he used infrequently, didn't point, didn't indicate for help, not full eye contact, didn't share things that interested him)
- repetitive activities (could get 'stuck' on a toy or activity, had a routine he liked thought not strict, e.g. eating and sleeping around the same times each day otherwise would be very unsettled)
- delayed play skills (doesn't engage in imaginative play/role play, focused on cause and effect toys)
- delayed self care (not making any moves towards dressing, toileting)
- no sense of danger
- limited attention ability
- some sensory issues, e.g. unsettled by certain sounds, light/dark
There's probably more but these were always the ones being mentioned early on and we're judged in comparison to the average child his age.
We got DLA when he was 2.8, we hadn't considered it but paediatrician recommended and this was pre-dx. We got middle rate care and we honestly wouldn't have thought before we were eligible. The extra money has been helpful, because it has meant we can try more stuff for him, e.g. we've bought sensory toys, we've bought Makaton supports, stuff for PECS, and we have the back up if we want to go out for the day and worried about public transport (as sometimes DNA be overwhelming) so we have the cash for a taxi, we bought an annual ticket to a local museum he likes... it has been useful for all sorts that has benefitted him and his wellbeing and development, and enjoyment.
BUT, it is particularly useful for accessing other services. We've learned that DLA can be used as a bit of a blunt tool to access services, e.g. We're on a register for local leisure activities for children with SEN, we can access short breaks / respite if we want to because of it, and other things, as a result of having middle rate care DLA.
Overall we did, and still do, feel that he's alright - his main limitation in his communication ability, but he can go out and about, we do lots of stuff, everyone tells us how fun and friendly he is, so we've had to sort of train ourselves to see the issues. But it hasn't been a label, instead it has enabled us to get more support. We live in a good LA for SEN provision however.
In DS1's group there was a boy who was diagnosed at 2.5. DS2 is going through the initial stages (paed appointments, SALT) and is currently 22mo. We started this process around 12-18mo, being more aware of early signs following our experience with DS2. We have an appointment next month after which point I expect maybe one more, and then determining whether to refer for official diagnosis process. If that was the case and he was diagnosed, we would be potentially looking at official diagnosis at or before 2.5yo.
DS2 is different to DS1, some similar signs (e.g. no pointing, doesn't ask for help, communication delays etc), but has other things, like walking on tip toes, gets more stuck on activities than DS1 and also has shorter attention span (didn't think that was possible!), more 'needy' but play skills are a bit more advanced than DS1 at this stage, whereas eating is behind DS1 at this age.