Published on 12, July, 2020
Hi all, I have a 9 yo dd who I have suspected from babyhood to be on the spectrum but Iv ignored and tried to manage symptoms on my own (badly). She is high functioning but I wonder if there are any benefits in seeking a diagnosis when she has no learning disability or physical impairments. she is a high achiever at school but I just am worried that I don't have the knowledge or tools for her as she enters her teens.
My 10 yo ds is waiting for assessment at the moment, just realised that we're over the months from referral for these to happen, but that's another story, and it's been about 18 months since my gp first suggested he might be AS.
You say she is high achieving at school, but struggles socially and you're not sure if you have tools or knowledge to help her as she grows.
First off- well done for getting this far! Parenting a NT child is challenge enough, without the added strain and pressures of asd!
Secondly - school should not judge you. If they do, it's not the right school girl your daughter.
Next, we'll assume it is the right school. They will know that the assessment is happening because the process starts with information gathering, from you and from school. We also had an assessment from the part of the education department that helps to keep children in mainstream school - here it's called IMS (inclusive mainstream schooling, I think, used to be EMS, extended mainstream schooling) but not sure what it's called in other areas. They went into school and did a full day observation (children don't know why person is in class because they don't want the observed child to change their behaviour). That came back telling us what we knew - issues with sensory perception, social interaction, understanding, self control etc etc but they then suggested lots of ways the school, and I, could help ds overcome those issues. The support offered in school should be down to need not diagnosis. This should be the case at all levels of education. The report will back this up by showing what the needs are, it will also enable you to understand her better, give you areas to gain knowledge in and ideas for your tool kit.
I decided to go for diagnosis because I believe my son is PDA (pathological demand avoidance) and this, although on the autistic spectrum, presents very differently to 'classic' autism and asperger's. I believe that getting a diagnosis is in the best interests of my son going forward. He's in yr 5 now and sooner than I'd like, we'll have to start thinking about senior school. Although he doesn't have to have a rigid structure to his day or week, changing school is going to be a huge issue and he is going to need a lot of support if it is going to happen successfully. The next school is currently being taken over and made an academy so we have no idea what the staff will be like, the ethos of the school or anything, so I want the backup of that bit of paper, so when he refuses to get dressed because his brother looked at him the wrong way (don't laugh, it's happened. No, do laugh, I do now, just not at the time) and I finally drag him in an hour or more late, they go 'good, you're here' rather than 20 questions as to why he's late.
I want the bit of paper for all the idiots he's going to meet in his life, the bosses who don't like being told 'no!' but who are prepared to try and understand the anxiety behind it. I want it gir me; do I can prove to the world, but mostly myself, that I'm doing the best I can for my child.
Mostly I want it for him, so he knows why he feels there's a difference between himself and other people.
Which way to go is a personal thing with no right answer. I would advocate for giving your daughter and anyone else who may come into her life (teachers, friends, bosses, partners ...) the best possible opportunity for a happy, peaceful life. At this point in time you have to make that decision and I wish you both all the best, whatever you decide.
(Ps. Sorry, didn't mean this to be so long!)