If you don't mind disclosing do you/ did you get DLA for hfa at this age?
The diagnosis is high functioning autism, language good but not totally functional (comments a lot and plays but doesn't express needs), sensory issues, lots of rituals, food issues and poor sleep. Bright but difficult outdoors. Not in nursery. Known to CAMHS, audiology (glue ear, sometimes hearing aides), SALT for feeding, epilepsy clinic monitoring.
Low rate? I'm new to it all, but talking tonight it would help with financial side if things.
Have a google of the "cerebra dla guide". It will talk you through it all. Dla isn't awarded based on diagnosis, it is based on how much care you give your child over and above an average child of the same age so you would need to emphasise all the things you do / adapt. Decision makers generally don't have any medical knowledge so you need to explain anything medical / diagnosis wise as if the person knows absolutely nothing about it.
Thank you, DD is just 4 so mobility is out I've read since posting but I will try. The cerebra guide seems to be quite straight forward... you could write her little ways in forever on that form, particularly for routines!
Quite scary collating recent reports, speech, social comm clinic, CAMHS, audiology, dietetics, epilepsy clinic, general peadiatrics, ent, physio.... you don't realise until you get it all together!!!!
I've put things at the moment to reflect the range of times, e.g. Bedtime can take between 20min 2hours, night waking varies from a total of 1 for fifteen min to 5+ and 4 hours. Should I just put the worst? It an average? On a good day she sits in a buggy, a bad day she'd literally need holding away from roads and she'd hit and kick me as I tried to move her from car to house. She can be lovely, the main care is unpredictability so she needs to be held onto or arms reach. Occasionally she'll chat to people, though often she'll squeal under chairs
I'm finding the range of behaviour quite difficult to describe in the forms, she can be very high functioning but one consultant report catches a bad day- no eye contact, spinning, no acknowledgement in others and odd under furniture. Another describes a lovely little girl who doesn't use language functionally for needs but seems to have normal understanding and variable eye contact.
You don't have to talk about high or low functioning in the dla forms. Most local authorities only diagnose as "asd" now because lots of people can have some aspects that make them higher functioning and some which they completely struggle with.
Don't forget to describe what you do, but also went you have to do it and what would happen if you didn't. When talking about night time waking, it's not just how long she is awake, it includes any time you have to stay awake listening for signs that she has settled.
Don't just put the worst, or the best. You can put descriptions of both and say that you tend to have 80% very bad days and 20% slightly better days.
Well, done and sent, possibly the road to madness that form. Felt like a fraud at points (dh had a laugh reminding me of that at 12,2 and 4am...)
Sent: -teacher of deaf assessment -3 development assessments -Asd report -audiograms -2 epilepsy clinic letters - 2 dietician reports and prescription -2 hospital pead reports -salt report/ group invite letters -CAMHS group letter - home visit contact
... that's what I dug out as recent, hopefully straightford as it's all in agreement and a steady picture building up