Hi, just got a letter today informing me that my daughter doesn’t qualify for any DLA.
She has an ASD diagnosis but is high functioning and is 5 years old. The reason I applied is that she has terrible sleep problems (takes me 1- 1 1/2 hours to settle her before bed) high anxiety ( several severe phobias and aversions) sensory issues ( will not tolerate tooth brushing, hair brushing etc) and social communication difficulties that impact the amount of care I need to give (she understands complex maths problems but not instructions of how to get ready for school).
They seem to have based the decision on her diagnosis letter rather than the information I have. Because no adverse behaviour, sensory problems or repetitive behaviour were noticed in the 40 min assessment, they have taken that as there are none. This is despite other reports confirming that. I know they have done this as when I just phoned for mandatory consideration, I was quoted things from this report to justify not giving ASD. They said there is no evidence of sleep problems - no medication or sleep study. Medication has been discussed with GP but it was a mutual decision not to do this at the moment, a sleep study was never offered. They said, she is getting on very well at school - they mean academically - which she will as she is high functioning.
I was hoping to use the money to pay for things that she needs to help her with her phobias, sports clubs for children with disabilities (as she has been excluded from a mainstream one, not for behaviour but for meltdowns about anxiety).
It feels like because she is high functioning, no one takes it seriously. The school aren’t interested either as she achieves highly and follows rules. The anxiety that she displays and her behaviour at home need to be taken seriously. Her paediatrician and GP understand, but help is slow to come through. I know I should be grateful for her strengths but I sometimes wish people could see beyond the surface and notice the real and worrying issues underneath.
I doubt the decision will be overturned at the mandatory consideration so I will have to go to appeal. Has anyone had to do this?
thanks in advance,
we were also turned down - their checklist is ridiculous and wrong for high functioning asd children. my local citizens advice bureau have said they can help me reapply - they know more about it and know how to word things properly. i think you should go and ask them - best of luck x