Dla without evidence from the school or diagnosis?

[NeedSleepNow]

My 12 year old daughter doesn't have a diagnosis but is suspected to have autism. I'm wondering if she has any chance of being awarded DLA without a diagnosis and without the school having seen any issues.

She had some sensory issues when younger, struggled with change in routine but she coped well in primary school. Since switching to secondary she is really struggling. Sensory issues are become much more evident, she now struggles with noise, crowds, smells, feeling of clothes etc. The slightest thing send her in to meltdown in the morning and I struggle to get her to school (it might be something like her tights not feeling quite right, the smell of freshly washed school uniform etc). She comes home from school and has a meltdown every day, shouts and screams at everyone and then sobs about how sorry she is. Bedtime literally takes hours, I have to check her room over and over in a certain order incase someone is hiding in there as her anxiety is through the roof at the moment. I can't leave her at at home on her own or with her brother she won't take a bus home from school (she is overwhelmed by the noise/crowds and has a really fear of a stranger sitting next to her) so has to go to friends houses each night until I finish work. I'm late for work everyday because of the meltdowns and am having to look for a work from home job as I need to be at home for her more.

I have spoken to the school SENCo recently who was very understanding. My daughter's teachers hadn't spotted any signs of problems though and the SENCo said it sounds like she is masking at school. They have put her on the SEN register, she is on the waiting list to see the school therapy dog, the list for a couple of different interventions and have given her a pass to leave class 5 minutes early before the busy lunch and break periods as she doesn't like the crowds. They advised me to go to the Dr and ask for a referral for an autism assessment but warned that as the teachers haven't spotted anything (she worries about low marks/getting things wrong so works very hard in class, adhesives good grades, and tried to go unnoticed) it might be hard to get a diagnosis without evidence from the school. Last year she had a lot of contact with the pastoral lead (who has now retired unfortunately) and saw atherapist at school. In primary she had play therapy at school for a year or so after she was struggling with change at home when her Dad and I seperated.

Without evidence from the school or GP is there any chance of her being awarded DLA? Her care needs are so different to those of my two other children (aged 15 & 8), but I have no proof of anything just a diary of daily issues that I've been keeping. Will it be the same problem in getting a diagnosis, if she does have autism?

Professionals and diagnosticians are used to encountering different presentations in women and girls and aware of masking in schools.

The diagnostic pathway will no doubt have a long waiting list so it would be wise to get her on this.
The diagnosis should be multidisciplinary. As part of the assessment there is usually an observation by a specialist advisory teacher.

They will know what to look for in terms of attention and listening skills, any low level stress indicators/ repetitive mannerisms, facial expressions and sensory needs.

It’s good that you have been keeping a diary for DLA. It’s worth applying and if the GP refers you can add that she’s on the pathway.
Sounds like the SENCO has been supportive and putting strategies in place. You could discuss applying for an EHCP or you can make a parental request for an EHCNA.

Some useful links. I’d also look into SPD and explore a sensory assessment from an OT (specialist area not all are trained)

https://www.autism.org.uk/advice-and-guidance/topics/identity/autistic-women-and-girls

https://www.amazon.co.uk/Autism-Students-Limpsfield-Grange-School/dp/1849056846/ref=mp_s_a_1_1?adgrpid=58729925248&dib=eyJ2IjoiMSJ9.D6lzB0mhF8TVkxWsb5o4o_fha4gQPbeGxi90UqU_JFK9uWv6lNls4XB6YpthhjgceY5rs7VbOl3FMfgc3SqgT_ekmHuhLqTHs6-3T3K7pOV-u2dce8Auxk5IXJYHwSVxEMhEKSWgK6EEgsjm_WIYfm6dqDJOR8a7uSjbBgO2uDu-EFZzbXoHpvBZe10fBuZszjM3Rxln6d-QdM-ZBKpLPA.lzYZeuvjiXrQoeziRh9y7EOk-Me0Yfifmb5GHu65IOE&dib_tag=se&gad_source=1&hvadid=259131582404&hvdev=m&hvexpln=0&hvlocphy=9195089&hvnetw=g&hvocijid=91733756015073151--&hvqmt=e&hvrand=91733756015073151&hvtargid=kwd-299966264840&hydadcr=13722_1820887&keywords=m+is+for+autism&mcid=9452b5358fe632d0b8fa9f0e94e16c2b&qid=1763298647&sr=8-1

DLA is based on needs, not diagnosis. However, you can send the referral letter as evidence.

Evidence from school isn’t essential. Although you say you wouldn’t be able to evidence need at school but then go on to list a host of support they have previously provided, are providing and are going to provide and say the school understands DD is masking. You can use that as evidence.

DC who mask can receive a diagnosis. Good HCPs see masking for what it is.

Thank you both for your replies.

I feel a bit lost on this whole journey. My daughter is finding things very tough and it is having a real impact on her brothers now too. Her Dad doesn't see this side of her, she finds it quite tough going to his on alternate weekends and often refuses to stay the night, just wanting to be back at home. I suspect she also masks whilst she is there as she is always anxious/overwhelmed when she gets home in the same way she is after school. Her Dad doesn't think she is autistic, he thinks it's just usual teenage stress of growing up, secondary school, hormones etc.

@2x4greenbrick the school have been a lot more supportive than I expected but the senco did say that it might be difficult to get a diagnosis as they would be asked what evidence they had seen in school and none of the teachers had noticed anything. They all said she was a cheerful, polite and studious girl.

@24Dogcuddler thanks for the links, I've just ordered a copy of the book

I wouldn’t worry about the SENCO saying the school doesn’t see anything. A good HCP will see through that since the school is providing several elements of support and the HCP will understand masking.