'Discharged' - what next?

[Whatafustercluck]

Absolutely convinced 5yo dd is neurodivergent. Long history, started with 'quirks' since around 18 months and culminated in us desperately seeking some kind of support/ intervention when her behaviour went off the scale when she started reception. Spoken to various professionals about strategies (family worker, YOUnite, Young Minds, etc) and eventually managed to get a referral through the GP (only after pleading with them that we were worried one of us would end up in danger).

Mental health team engaged, we did the obligatory TripleP course and had one to one sessions for six weeks. All really helpful and on the whole have seen positive changes. We have outstanding concerns about unmet needs at school and a totally ineffective Senco (behavioural difficulties not experienced at school, only at home, academically she's doing well) who takes a very 'traditional' approach to behavioural management and believes that dd chooses not to wear shoes and socks simply because she 'doesn't want to'.

Anyway, we've just had our discharge letter from the mental health team and were expecting to see some kind of next steps (how naive are we?!) It essentially says we've completed the sessions, have seen improvement, should raise outstanding issues with the school and if problems return (they have improved, because we understand her better now, they haven't gone away) we should go back to the GP. It goes on about how Covid has affected young children but how by continuing to do as we have started she'll come through it. I feel very strongly that Covid is now being used as a convenient cover for not further exploring likely pre-existing social and communication difficulties caused by neurodivergence, and exacerbated by Covid.

So it seems we've essentially been dumped out of the pathway/ system having done all the parent led bits and are left once more to fight out case with the school with nothing by way of supporting evidence that she has additional needs. We continue to meet daily challenges getting her to school (procrastination getting dressed, control/ sensory issues with shoes/ socks which mean she has meltdowns on her way to school because they 'annoy' her - resulting in her screaming and throwing her scooter etc).

So, what next for us? Are we really back to square one again? At the moment the only way forward we can see is private referral.

If you think DD needs more support at school you can apply for an EHCNA yourself. IPSEA have a model letter you can use.

Have you asked for a referral for assessment for whichever neurodiversity you suspect or looked whether you can self refer? In some areas CAMHS don’t assess for e.g. autism, a neurodevelopmental community paed does. And in areas where it is CAMHS often a specific referral for that is necessary rather than a general CAMHS referral.

In some areas you can self refer to SALT and OT as well, although not all areas commission sensory OT on the NHS.

It's all very complicated and difficult to navigate so not entirely sure what we can do! Initially suspected ASD due to very extreme emotional reactions and controlling behaviour, sensory issues etc. Considered ADHD too though as in many ways her social skills are good (we pay for prolonged interaction with burnout/ meltdown though). She doesn't really seem to fit the mold for anything specifically but she can be very demand avoidant when stressed. When we originally tried to get a GP referral we were told she's too young to diagnose as could just be normal 5yo behaviour - we were patronised with the usual questions about whether we have appropriate rewards and consequences to manage her behaviour better. This is the problem we have, she's not 'obvious' enough in her symptoms, with the exception of her control/ sensory issues. We get the meltdowns at home when she's had a whole day of keeping it in. Or we struggle to get her to school when she's aware the normal school day routine will be different in some way (swimming lessons, sports day, jubilee celebrations etc).

It doesn’t have to be complicated.
-You can apply for an EHCNA yourself.
-You can investigate whether you can self refer to SALT and if not who can refer - usually schools/GPS can.
-You can investigate whether sensory OT is commissioned in your area and if so can you self refer and if not who can refer - again, likely to be schools/GP.
-If the CAMHS referral was a general referral rather than specifically for an ASD assessment you can look to see how you get a referral specifically for an ASD assessment. Is it CAMHS or a community paed, can you self refer or do you need school or the GP to.
-You could ask for an early help assessment.

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