To ask which rate of DLA you get?

[PDA]

My son was recently diagnosed with autism with a PDA profile. He presents as what would traditionally have been described as ‘high-functioning’ autism or Asperger’s, as in he has good language skills, has friends, can attend mainstream school nursery etc. However he needs an extremely high level of care, constant 1:1 supervision, has catastrophic meltdowns multiple times a day, can at times be very aggressive. His autism is extremely disabling and our lives are significantly impacted. I work much less than I would like to because he can’t cope with longer than half days at nursery and I doubt he’ll be able to attend school full time either.

I knew nothing about DLA until a Health Visitor told us about it and encouraged us to apply. I’m just wondering which rate we’re likely to get. Obviously there are children with even higher care needs out there who presumably would get a higher rate than us.

Also wondering if we’re likely to get the mobility component as he doesn’t have a physical disability, but he does refuse to walk frequently when he’s having a meltdown, meaning that we can’t stray too far from the car when out in case we can’t get back to it. When I’m on my own with both kids it’s very hard to leave the house safely.

We think we’re going to start having to pay for private OT sessions for him, so trying to work out if DLA would help us pay for this.

If he needs constant supervision during the day then he should qualify for mid rate care. You need to demonstrate all the ways in which he needs more care than his typically developing peers. Cerebra have a very useful guide to answering the questions on the form
https://cerebra.org.uk/download/disability-living-allowance-dla-guide/

Mobility will depend how old he is. A 4 year old will always need supervision out in public but an 11 year old should be able to play out, walk short distances alone and even cross quiet roads so by that age, needing supervision out and about all the time would mark him as different from his peers.

I get middle rate for my boys with ASD.

Fill out the form based on the worst day and submit as much documentation as you have to back up the application.

We get middle rate care but nothing for mobility, DS is 5 and diagnosed with autism. We also get carers allowance for him

I get the lowest rate for my asd son. I did emphasise how much care and supervision he needs on a daily basis but was still awarded the lowest rate. Which helps, but doesn’t stretch to respite or a relief carer which is what we, and he needs

With asd it varies from child to child. My son receives middle-aged care lower rate mobility. Be very clear on the form of everything you have to do and the impact. My son is particular with food in that it has to be the correct shade of cooked. I put on the form how I often have to redo his dinners to ensure it's correct. If your filling out the form I recommend keeping a diary for a few days of all the things you do and time it takes as you may not realise how much it equates too.

We get middle rate care and low rate mobility (from when he turned 5) for my almost 8 year old with ASD. He’s in mainstream school and is very academically able. But it’s very challenging to manage his meltdowns, aggression and Demand Avoidant behaviours at home. We get mobility element as he’s very unpredictable when we’re travelling and has run off/across roads in meltdowns.

Basically mid rate is most the day
high rate is consistent night care
low rate is less care in the day

My dd has autism and we get High rate and low mobility, it’s due to the fact she needs frequent support going to sleep and attending in the night. Outdoors she needs physically holding

You don't say how old he is, but my DS was very similar at 7 when he first got DLA - MRC and LRM.

My son is severely autistic ,severe learning disabilities ,non verbal, he's 14 goes to a special school and gets HRC and HRM under SMI rules
You can only get high rate mobility from age three, and Low rate mobility from five .

My ds gets high rate of both, he has since he was three and had the care component earlier. He will get these until he moves to pip. He is severe/ profound. Lots of evidence from professionals.

Dla goes on needs though. Have a look at the guides on nas and contact a family. Maybe a general Google too. For mobility you're looking at severe mental impairment or virtually unable to walk. You need to show how he meets every criteria and link it to a professional letter/ report/ document if possible. For smi the autism diagnosis proves incomplete development of the brain (awful wording I know- not mine, I detest it too).

Answer the questions completely even if you repeat yourself. You could always use extra paper to go through the criteria showing and referencing how he meets them.

Bare in mind though that when you do a change in circs the level of dla he gets could go down as well as up.

Mine gets higher rate care as still in nappies at 6, difficulty going to sleep and is a frequent night waker, but nothing for mobility. I meant to put in a new claim at 5 for lower rate mobility, but other things got in the way.

What has autism got to do with mobility?

@Cantthinkofone123 Some individuals with neurological disorders can refuse to move/have meltdowns/be a danger to themselves and others outside. Potentially aren't able to use public transport and will never be able to drive etc..

If a child cannot walk without restraint or is likely to cause themselves danger or others danger when out and about they can meet the criteria for low or high rate mobility. You may want to google it - lots of information out there. High rate mobility for autism is particularly hard to get as they first have to meet the criteria for high rate care and then there’s a flowchart for severely mentally impaired criteria they have to meet every point on the flow chart. Some children qualify under virtually unable to walk if they have meltdowns where they refuse to walk / move.

Also wondering if we’re likely to get the mobility component as he doesn’t have a physical disability, but he does refuse to walk frequently when he’s having a meltdown, meaning that we can’t stray too far from the car when out in case we can’t get back to it.. How did you resolve it if this happened? I think often describing that demonstrates the level of need

My son is nearly 12 and has autism, dyspraxia and sensory processing disorder. He attends a complex needs school and has a diagnosed sleep disorder and takes sleep medication. He has been on high rate care and low rate mobility for years now, due to end at 16 when we will apply for PIP for him. (I get PIP myself for complex autoimmune issues).

My dd gets high rate, and low rate for mobility.

As well as autism she has seizures. She is in school on a very part time basis, and I need to check on her throughout the night as well.

30 year old gets mid rate care and lower rate mobility

One Asd child middle rate care, no mobility.
One Quadriplegic child with epilepsy, tube fed, can't move body on their own requiring 24/7 care high rate care and high rate mobility

It's about the ability to be safe around cars and traffic, often children with autism.have poor impulse control and no sense of danger ,lots of children with autism are eligible for LRM from five for these reasons
My son gets HRM because as well as autism he also has severe mental impairment he's 14 very complex needs ,non verbal ,cognitively around 2/3 most children with autism wint qualify for HRM but some do ,some also qualify under the virtually unable to.wallk criteria if their behaviour is so extreme it renders them virtually unable to walk .

High rate and low rate mobility for both kids. Both have ASD & ADHD.

Middle rate care for combined type ADHD and autism.

A child may physically be able to move themselves, but still not be able to mobilise independently safely: If their spatial awareness is impaired to the point that they struggle to see how to move around objects, or move objects they need to move like their trousers and pants for toileting. At 4, they should be safe while mum changes baby's nappy. If they can't move or toilet safely, mum or dad could only change the baby when another adult is present.

My 12 year old gets HRC and LRM now but got LRC when younger. Up to around the age 8 I found that even when the child needs a lot of additional support they feel that most children that sge also need a reasonable amount of support do it’s very hard to get HRC. Once older it’s more highlighted how different the child’s needs are compared to their peers.
My daughter has ASD, ADHD and is in mainstream with an EHCP with significant night time care needs