DLA rejection

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

  • I have recently applied for DLA for my daughter but as yet we haven’t heard back either way. My daughter is also classed as high functioning though academically is struggling and falling behind her peers. School don’t want to acknowledge that there is an issue. They basically say that the behaviour happens at home so it’s not their issue.... though school is a huge contributing factor to the meltdowns we get at home as she hates everything about school. Sorry I don’t have anything useful to say, I just hope you are able to resolve the problem and get what you and your little girl deserve. 

  • I’m pleased to say the mandatory consideration did change the decision and she has been awarded low rate care until 2024. I really didn’t hold out much hope for this and thought we’d have to go to appeal, so it’s a huge relief as it’s quite stressful. Nothing really changed from the original application so I’m annoyed we had to go through that stress. But if they turn you down first time then definitely fight it if you know you give at least an hour of extra care a day. 

  • Hi I just came across your post, I am saddened what u r going through, my daughter is 7 and she had her struggles at school but with the Asd support groups and training I managed to help her as much as I can, until year 2 at primary when things got worse for her at school, teachers shouting and pressure on maths, that I decided to send a de register my child from school and home educate her because she ended up at hospital viomiting through the night with her school anxieties, the la have not even been in touch for the past 6 months iv kept a diary of the work we have done, she is so much happier, I think the schools fail with Asd and don’t have enough knowledge, I would defo appeal, I think areas have different ways, but you need to get your points across the best way is through a paediatrition and send their reports to them