To apply for DLA for an autistic child

[Jamtomorrowandthenextday]

My child is autistic, high functioning, copes well but struggles a bit socially. They really cannot cope with busy environments thronging with people, people shouting, pushing shoving etc, struggled with high school, became a school refuser. We asked the school pupil support whether private school would make a difference, she said yes, calmer environment, butter pupil behaviour, fewer traumatised kids lashing out. My child now attends a mainstream private school and it has been utterly transformational.

We pay for the school ourselves. We could probably apply to the council for funding with the back up of the state school they did attend but tbh we work full time in stressful jobs and are tired of the endless fighting that is associated with trying to get help for a SEN child. We can afford the private school fees but doing so does mean we cannot quite less the lifestyle we otherwise would annd are frustrated that the state couldn’t provide our child with a suitable learning environment. We pay our taxes, the state we’re not able to educate our child.

So, chat on the radio yesterday about the number of people who claim DLA for ASD. It’s not means tested. We currently receive no benefits whatsoever. AIBU to put in a claim for DLA in the hope that it would in some way to help mitigate the school fees? It wouldn’t have occurred to me to do so, but people do claim it (and I’m quite annoyed at being made to pay VAT on school fees, when I would dearly love to be able to use a state school but can’t). Can anyone who currently claims say whether we’d be likely to get anything?

You need to be careful of saving money in an ISA ,for him
As if he needs to claim other benefits [ not PIP ) in his own right as an adult savings will affect that.

As long as your child needs greater time spent on their care needs, that are more than is considered normal, then absolutely apply.

I have three autistic children (one with ADHD as well). Two of them receive DLA; one HRC and one MRC and LRM (I’ve never needed to apply for the third one as the additional care needs are really there).

Also, start the EHCP process for your school and remember that if it goes to tribunal, around 95% of the time the LA loses.

This is the problem with the umbrella ASD diagnosis ,

I had DLA for my Ds - it is in comparison to peers .. His needs are high but in a different way not sleeping , can be a danger to himself , needs de escalating when he came home from school - extra expenses due to sensory issues with clothing - planning activities meaning I need to prepare , numerous activities failing because he wanted to go but can’t handle it , appointments, school meetings , sensory issues around food and anxiety meaning he would starve himself and restrict fluids , aggression, damage to the house . This isn’t an extensive list just difficulties off the top of my head.

i am not saying your life isn’t challenging but don’t assume because it is more of a hidden disability it isn’t challenging.. it’s different

As for private schools there is a huge shortage of Special school in state education - The Op isn’t just wanting her child in private education because it will be nice - she is because her Dc couldn’t manage in mainstream -

Many many more children are left home schooled because they can’t cope in mainstream school but there are no special schools left .. without private schools Op would be another one doing the same

My dd is also autistic and at a private secondary for the same reason. We’ve never applied for DLA because she isn’t what I’d class as ‘disabled’ (and she herself doesn’t think of herself as disabled) - she is bright, capable, independent, can look after herself, in fact she needs less care from us than her neurotypical brother. Sending her to private school was our choice and many families don’t have that choice at all - I wouldn’t expect the taxpayer to subsidise it (much as I’d love to have the fees subsidised as paying them is a real struggle and is going to get more so with VAT). I have friends with children who have much greater needs, who are disabled without doubt, and I would honestly feel embarrassed telling them we were applying for the same benefit.

YANBU, OP. Do it and do it soon because it's a long process. The first step is to call the DLA helpline and ask for a form, doesn't take long at all and if you do get DLA eventually it will be backdated to the date you called. You'll then be sent the form with a deadline to complete and return it.

When someone first mentioned DLA to me I dismissed it because I didn't think my autistic child would qualify. They have recently been awarded middle rate care and lower rate mobility.
"once I started collecting the various reports and evidence I realised just how disabled he is by his autism."
This. Tbh when I parent my child I don't question it too much; it's just how he is and what I have to do on a daily basis - it's our normal and we don't know any different. But when you step back, look at the evidence and the criteria, and (in my case) get some advice about whether the support you give is above and beyond what a neurotypical child needs (clue: it is!) it's quite overwhelming and depressing tbh.

I found doing the claim and eventually getting the award all quite emotional tbh - a reality check confirming that my child is in fact disabled. However, no regrets about doing it. We have already spent a significant amount of money on our child and his extra needs but had to be careful about it - now we have money which is for him it will cover the essential extra costs and we can also think about any therapies that would benefit him.

Also I work part time in a low paid job and I don't see myself getting a full time job or anything more demanding any time soon. I don't have the time, energy, mental or emotional resources for anything more than my current job and parenting him and my second child. (No, I did not realise DC1 was autistic when I conceived DC2... my "lightbulb moment" was just before DC2's first birthday.)

PS just to add it took 17 weeks from when the DLA form was received by the DWP to when they made a decision and awarded DLA. This was very recent. They are currently quoting 20 weeks.

Of course it's not unreasonable to apply :)

Again a diagnosis of autism doesn't guarantee an award of DLA ,its quite possible the Op,s chold wouldn't qualify, but that's for the decision makers to decide. Its how the disability affects the person I say this as a parent of a child who has severe autism and learning disabilities,
Anybody can apply though.

I have a child on mid rate care and low rare mobility. Autistic, ADHD, dyslexic and severe anxiety. The money goes straight back out to pay for tutoring, special foods (limited diet) and sensory items etc.

School is disastrous and there isn't anywhere near the support needed to support them. This means there's been big periods of missing out entirely on education. I'm sure they would do well in a small private school class but as a single parent it's impossible to afford. I do think DLA should be means tested in some way as budgets in one area do affect budgets in another (and the ASN support budget is being forever cut).

In terms of terminology the reason most autistic people don't like the 'functioning' labels is that they hugely downplay the needs of many people. Those who would have previously had an asperges diagnosis (no learning disability) often have huge issues with e.g. anxiety, self harm, suicide etc. My nephew who is autistic but would come across as less high functioning in theory (would quite likely ignore you) is far happier, more content and sleeps better than my child who is intelligent but has huge sleep, eating, anxiety and self harm issues. If someone is raised to feel they are high functioning this could have devastating mental health impacts if they go on to unexpectedly have issues with school, work, relationships etc.

One thing to add Op . The forms are emotionally draining along side looking after Dc .. mine took weeks - you aren’t picking out any strong points . No positives it is all there struggles , all the things they don’t manage their peers do .
I am not suggesting you shouldn’t do it just want to prepare you

I think just having the broad umbrella umbrella term ‘autism’ for everyone, is really hard for higher needs people with that diagnosis. It minimises how hard those people have it. I hope that they do redefine it in future.

This is true. Mine took about 6 weeks to fill out in the end because I just cried all the time. Re-reading his various assessments brought home how affected he is on a daily basis. To the outside world he seems 'high-functioning' but you know the reality and having to detail it is is really confronting. You realise that what your normal day to day life is actually very debilitating.

A less reductive and more accurate approach perhaps would be to try to understand the (unique) dimensions of a person's autism (thinking of the spectrum as a 3D map which is not linear and does not run from hard to less hard). And then also look at co-occurring conditions, whether these are learning disabilities, ADHD, OCD, anxiety, trauma history etc. And then consider how autism and co-occurring conditions are combining/interacting/being exacerbated in the person's environment, and the impact of all this on daily life (with the autistic person being centred in this).

I would apply. I applied for my son when he was younger. He was awarded it. I sent off all the SALT and educational psychologists reports I had. I downloaded the forms online. When I felt he no longer needed it, I contacted them again. In my experience, it was harder to stop it than to get it 🙄

Exactly this. And it’s worth pointing out that it’s those who are very significantly affected by autism are not actually able to make their views known (or, sadly, even have views in the first place), and so the current dominant narrative excludes them and their preferences.

And for the uninformed, who seem to assume if a child 'looks normal' they cannot be significantly affected by a disability, do bear in mind that just 10% of autistic people work in a full time job. Think about the implications of that for children's live chances.

As PPs have said, the support children are often legally entitled to via EHCPs, including OT and SALT and psychological therapies, are routinely withheld by cash-strapped schools and local authorities.

Final thought: meeting the costs of disabilities is about social inclusion and ensuring disabled people can participate in life like other people. People who come on here and say, well I don't see why my taxation should pay for anything that I won't personally use, are sharing a pretty unedifying moral code.

The child doesn't have an ECHP by the sound of it and manages without support in school. This is clearly not a high needs child with ASD.

100%.

My DS looks 'normal'. He behaves 'normally' in limited social situations. This si due to very great effort on my part where I narrate endlessly what is expected socially of him. 'We are going to your uncle's party. We will be there for 30 minutes. The adults will ask you the boring questions adults always ask like 'How is school? What do you want to do when you finish school?' We have to practice responses and reactions.

I am willing to bet if people knew he got DLA we would be the subject of a whole load of bitch fests about us screwing the system.

Yet he is 14. Can't swim, tie his shoelaces or walk down the street to fetch some milk. He can hold things together at school but has self harming screaming meltdowns at home where he attacks me or himself. I have had to lock my door at night because when he is in this phase he has tried to strangle me. He has an IQ under 80. He can't remember anything, or recognise people.

He largely manages to hold it all together at school and in very narrowly selected social interactions. People twig he has autism, but think it does not affect him- or us too much.

These are very normal struggles for parents with children with SEN. What you see when you see them out on the school run or at Costa enjoying a coffee is not what it is behind closed doors.

Try, you won't find out if you're successful or not if you don't!

FWIW, though I'm often guilty of feeling 'envious' of parents with higher functioning autistic children, I know damn well that 'higher functioning' doesn't necessarily mean easier. Your child is still autistic - that's a life-long disability which will impact on their social relationships and often, sensory experience of the world. If you feel that you're spending extra money on your child for: special foods, therapies, private school, special seam free clothes, weighted therapy aids, therapy dog, special activities like going riding, etc, indulging their obsessive interests because that's what they live for, speech therapy, drama therapy, private transport because they can't cope with public ... then yes, you should apply for DLA.

My own son is what I'm comfortable to call 'severely autistic' and has significant LDs too. He has a whole package of challenges and limitations - we definitely spend extra on: household repairs and replacements (he fiddles with things and tests them to destruction), special foods, obsessive interest toys and visits, petrol, nappies (until he was 10, at night!), keys live in a lockable key safe and we're looking into buying Air Tags for him - and so on. Plus, wear and tear on US is considerable! We are knackered. I bet I spend a lot more on coffee house 'treats' myself.

A lovely friend helped with the first application - she kept on reminding me to look at the 'worst day' scenario. How bad are things when they're at their worst? What can he simply not manage? What do you need to spend money on at a maximum? Can you safely get across a busy noisy city by public transport? Does he depend on therapies or clubs that cost a lot? Do you need to get him special foods because he has food sensory issues (ie do you end up cooking two bloody meals each time, like I do?!)?

Don't expect to be put in a higher category - we're in the middle cat I think, because of my child's LDs and general safety issues when out and about. But I bet you could qualify for the lowest. Every little helps.