Published on 12, July, 2020
Hello,
i hope this message finds you all well.
My name is Maria and my youngest has received a ASC diagnosis in December 2021 having been referred at the age of 10.
I applied for DLA in February of 2022, I’ve found out today that the claim was declined. It seems my son doesn’t present as being greatly affected by his ASC. He is being affected by it but his brand of Autism affects him socially with rules, turn taking and frustrations stemming from this, on the flip side he clearly manages it or is masking it to high level.
He doesn’t become dysregulated at home however there was a two occasions were he did get upset and shouted at school staff, the school headteacher was contacted by the DWP decision maker for the DLA Claim who answered the questions but didn’t share these incidents with them.
I’ve been told today to think of him on his worst day and add that in the form however at home he doesn’t have worse days. The worst for him is struggling with being told no, grumbling and sulking. He recently walked out of the house impulsively because he wanted to knock at his mate’s house even though I’d said no! Obviously he won’t experience social communication difficulties at home as he isn’t surrounded by people who make demands upon him in the same way as school etc so I won’t see that.
I can’t say something isn’t happening when it isn’t. They also discussed my sharing of my sons sleep issues and that he doesn’t settle for hours past bedtime, he has been referred by myself to the Together Trust in relation to that but they have an 8mth waiting list so therefore he cannot be assessed, diagnosed and prescribed medication so they would not even consider that issue.
I don’t know what else to do! I’m worried he will struggle with the transitions from primary to high school, thus he will need support travelling to and from school, I’ve also told them he has no awareness of keeping himself safe in the community, crossing roads with due care and attention etc this is something I’m supporting him with but he is unpredictable.
I could ask for a mandatory reconsideration but it seems pointless.
Has anyone else been through this? What advice could you suggest?
yours gratefully
Maria
I've read your message and understand your situation. It sounds like you're facing challenges with your son's ASC diagnosis and the DLA claim. It's unfortunate that the claim was declined based on the perception that his condition doesn't greatly affect him. It's clear that your son has his own unique way of coping and managing his autism, which might not always manifest as severe outward behaviors.
It's interesting that there are differences in his behavior at school and at home, particularly in terms of his reactions to rules, turn-taking, and frustrations. It's common for individuals with autism to exhibit different behaviors in various environments due to factors such as masking and social demands. It's unfortunate that certain incidents weren't shared with the DWP decision maker, as they could have provided a more comprehensive understanding of his challenges.
The suggestion to consider his worst days might be difficult if his worst days aren't easily noticeable, especially at home. Your observations about his struggles with being told no, grumbling, sulking, and impulsivity provide valuable insights into his daily struggles, even if they might seem less severe compared to more outwardly disruptive behaviors.
It's understandable that you're concerned about his upcoming transition to high school and his safety in the community. The unpredictability you've mentioned is a significant factor to consider, and it's important to ensure he receives the necessary support.
Considering a mandatory reconsideration is an option, but if you feel it might not yield the desired outcome, you might also explore seeking advice from autism advocacy organizations, legal experts, or even other parents who have navigated similar situations. They could provide guidance on presenting your case more effectively and advocating for your son's needs.
Your dedication to supporting your son and seeking the best for him is evident in your message. I wish you all the best in finding a solution that ensures he receives the support he requires.