DLA question

[inlotsofknots]

Hi all

My daughter is awaiting Autism assessment. The expected outcome is level 1 autism. I want to apply for DLA for her as her care needs with regards to sleeping, eating, dressing etc have deteriorated to the point I couldn't work full time any longer.

School are supportive, believe she is autistic and have put in reasonable adjustments. We have paid privately for the autism assessment but this is being done by nhs assessors and no reason why this diagnosis shouldn't be accepted. All in accordance with NICE guidelines. She also has ARFID, but no formal diagnosis given.

My issue is that I haven't ever bothered to include the GP in any of this. When she was a baby, poor feeding was really just ignored or blamed on reflux and as she got older was just 'picky eating'. Then covid happened and so largely we have just got on with life as best we can, knowing that there is no real meaningful help out there. She isn't losing weight, but this is down to huge effort on my part.

I am worried that just getting on with things will now impact our chances of DLA as there will be little evidence a GP can provide. I'll provide evidence, but without GP evidence, do you think this will fail to be awarded? Thanks

[RuthieRu]

What is level 1 autism?

You probably need to wait until you’ve had the assessment and have the reports from that. You don’t need a diagnosis or evidence from the GP but you do need some form of evidence to back up what you say. Do you have reports from school? Or anything from the people doing the assessment?

[inlotsofknots]

@RuthieRu it's 'high functioning' autism although I know that that term is not well liked anymore, which is why I try not to use it.

I will have a report from her assessment, a brief report from school, and I can provide details of all the care needed at home, but there isn't anything other than that.

[Headfirstintothewild]

You don’t need GP evidence on top of the other evidence. The GP will have copies of the diagnosis report.

[NameChange30]

There's no such thing as "level 1" autism. I believe the correct phrase is autism with low support needs or something, but it doesn't sound as if your child has low support needs, hence applying for DLA.

I think it will be enough evidence to send the assessment report and evidence from school. Does she have an IEP? Have you had an Early Help Assessment?

Assume you haven't actually called to get the DLA form yet... while you're waiting for it to arrive it can help to keep a diary. Detailed log of the help and supervision she needs throughout the day.

[Sparklediamondstar]

I home educate both of mine (both awaiting autism diagnosis) and I've got DLA for both without the diagnosis yet and without any professional evidence. I wrote sleep diaries and wrote in detail how their care and mobility needs were way above what a typical child would need. They both get low rate mobility, one medium care and the other high rate. Take your time over the form and if you get rejected initially so a mandatory reconsideration disputing each point. Good luck

[Sprogonthetyne]

DS has never seen a GP about anything autism related, he was referred to pediatrician through health visitor, but has been off their books since his diagnosis. This wasn't an issue at all for DLA, but we did provide other evidence. We had the diagnosis and some reports that were done as part of EHCP process and the school senco filled out the evidence page.

Have you ever mentioned any of the food issues either in the autism assessment or at a senco meeting? If so send in any reports or meeting minutes that mention it.

[Headfirstintothewild]

@NameChange30

There's no such thing as "level 1" autism. I believe the correct phrase is autism with low support needs or something, but it doesn't sound as if your child has low support needs, hence applying for DLA.

I think it will be enough evidence to send the assessment report and evidence from school. Does she have an IEP? Have you had an Early Help Assessment?

Assume you haven't actually called to get the DLA form yet... while you're waiting for it to arrive it can help to keep a diary. Detailed log of the help and supervision she needs throughout the day.

It is not so common in the UK, but some assessors do use the three levels that are used in the DSM. 

[UnbeatenMum]

You don't need GP evidence. I was awarded DLA for one of my DC with just the assessment report as evidence. She wasn't given a level but would be level 1 if they had, diagnosed age 12.

[NameChange30]

FWIW, I think you should make a GP appointment to talk about the ARFID and ask for a referral.

The GP should still make a referral to the relevant service. Young people may be treated by their local community eating disorders service for children and young people, generic Child and Adolescent Mental Health Services (CAMHS), community paediatric services, in the local acute paediatric service, or by a range of practitioners, including dieticians, speech and language therapists, psychologists and occupational therapists.
https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/arfid/

[inlotsofknots]

Thanks all, some great advice.

Sorry. I didn't mean to get the terminology wrong. I had seen others use level 1 autism to describe what would have been Asperger's in old money, but I was just trying to describe the level my child is probably at. All this is new to me.

When she went away on residential with school I had to provide all the meals for her as she couldn't eat from the canteen with other children, they also had to 'put on a different provision' for my child as she couldn't tolerate the activities the other children were doing. I am sure the school would back me up on that

[RuthieRu]

I would look at some of the online guides available that help you to fill out the forms, I sometimes think how you answer the questions carries more weight than your evidence. I looked at a few different resources online such as cerebra and scope - try and look for autism specific guides that help with wording your answers. One thing I did was for each question I explained how my child’s care needs differed from a typical child their age. Be as detailed as possible.

[RuthieRu]

Don’t worry about terminology. That’s something that is often hotly debated, I wouldn’t get drawn into that. I just haven’t heard of level 1 autism before.

[ViveLaOeuf]

We didn't use GP evidence for DLA but we did have reports from community pediatrics, speech and language and school as well as an EHCP and all the expert reports that were done for the EHC needs assessment.

The cerebra guide is guite good.

[inlotsofknots]

I am thinking of paying privately for an EP to help with a report for the transition to secondary school too, as that is an area of concern and I think we will need all the help we can get. She's highly intelligent so ECHP will be tricky to attain. I've seen so many others completely broken by the process of getting one or not getting one and their child's needs are demonstrably higher than mine!

[MissHavershamReturns]

Op you can definitely get DLA without evidence from GP. We did most medical stuff privately and so ds had hardly seen gp. He’s probably similar to your dd and I got DLA and an EHCP. I’m going to pm you.

[Headfirstintothewild]

Academically able DC can get EHCPs. 

[NameChange30]

@Headfirstintothewild

It is not so common in the UK, but some assessors do use the three levels that are used in the DSM. 

Sorry, I stand corrected.

[NameChange30]

@inlotsofknots

I am thinking of paying privately for an EP to help with a report for the transition to secondary school too, as that is an area of concern and I think we will need all the help we can get. She's highly intelligent so ECHP will be tricky to attain. I've seen so many others completely broken by the process of getting one or not getting one and their child's needs are demonstrably higher than mine!

If I were you, I would not get a private ed psych assessment straight away. I think you should request an EHCNA - advice on it here:
https://www.ipsea.org.uk/asking-for-an-ehc-needs-assessment
As PPs have pointed out, being bright doesn't mean she won't get an EHCP, and you might as well request the assessment, as least.

If i were you I'd wait for the outcome of the autism assessment and EHCNA before deciding whether to pay for any more assessments.

And talk to the GP about ARFID as I already said.

[FluffyDiplodocus]

My DS was awarded DLA before his diagnosis, it was just on the basis of his schools statement, a SALT report and what I wrote.

[inlotsofknots]

Lots of people here have mentioned EHCPs. I genuinely thought that because my child is academically ahead of ALL of her peers, that we wouldn't get this.

I'm happy to apply, but can anyone tell me what exactly we'd be asking for on one? I have literally no experience so would love to hear from someone with a child like mine. Extremely bright but struggles socially and with various sensory issues / phobias / anxiety. Would love to know what we could get outside of 'reasonable adjustments' that I'll be fighting for. Thanks

[BaconEggsAndDumpling]

@inlotsofknots

Lots of people here have mentioned EHCPs. I genuinely thought that because my child is academically ahead of ALL of her peers, that we wouldn't get this.

I'm happy to apply, but can anyone tell me what exactly we'd be asking for on one? I have literally no experience so would love to hear from someone with a child like mine. Extremely bright but struggles socially and with various sensory issues / phobias / anxiety. Would love to know what we could get outside of 'reasonable adjustments' that I'll be fighting for. Thanks

She will likely spend most of her day at school masking to fit in with social norms and deal with the extremely stimulating sensory environment (or possibly (also) a lack of certain stimuli). This can use up a lot of her energy and mean there is little left to engage in actual learning. You may also find that she melts down after school, and possibly in school, that she school refuses and that her mental health goes down hill. It may not be apparent this is all happening until she is older, but it is best to get provision in early to avoid it happening if you can.

We got DLA at 4 without a diagnosis or any reports and just a statement from preschool who, at the time, weren’t fully on board with the idea that he had autism and didn’t in any way think we should be claiming DLA. (He is in a special school now!)

[BaconEggsAndDumpling]

You don’t really ask for anything. The EP, OT, SALT that you’d want her to be assessed by will identify any additional needs that she has and then the provision she needs to meet them.

This could include OT sessions, smaller class sizes, socials skills sessions etc.

[NameChange30]

There is an another category of special educational provision. This is health care or social care provision which educates or trains a child or young person in some way. For example:

• speech and language therapy, which teaches your child, or you as a young person, how to communicate more effectively
• occupational therapy, which trains your child to do something such as using the toilet or getting dressed, or
• cognitive behavioural therapy or mindfulness, which trains you to manage anxiety.

If your child (of any age) is, or you as a young person are, receiving health care provision or social care provision, which has this educational or training element, then this provision is considered special educational provision.

From https://www.ipsea.org.uk/what-are-special-educational-needs

[Headfirstintothewild]

Being academically able doesn’t prevent DC from getting an EHCP. EHCPs are about far more than academic ability. I have 2 very academically able DC with EHCPs.

The provision in EHCPs depends on individual DC’s needs, but it can include things like sensory OT, SALT, MH support, assistive technology/specialist software, forest school/care farm, TA time (either 1:1 or in a small group (the size of which can be stated)). You don’t need to know what DD reasonably requires at this point. That is what the EHCNA is for.