Published on 12, July, 2020
Hi, I have just joined the group, and in need of some advice, a quick overview of what we have in place for my child so far
Henry is in Mainstream school with a 1:1 support teacher
he has a occupational therapist that visits him
he has a speech and language therapist
he’s been seen by the school child psychologist
he has just recently been given a EHCP, his needs are social, emotional and emotional dysregulation, which can result in outburst of anger towards his peers and teachers, hitting, kicking, throwing chairs and equipment
the last 2 years since Henry started in his reception class at school have been beyond stressful and upsetting, a constant battle between myself and the headteacher, staff and the school policies, as the school were not acknowledging or addressing his needs, it’s been a massive learning curve these last 2 years for the school as they were not exactly SEN friendly. I considered changing schools many times but Henry always wanted to go and he was forming friendships and a positive relationship with his 1:1 so he stayed.
we have been waiting for well over a year now to get an appointment for his initial social communication appointment to get a diagnosis, the letter arrived 5 days ago, I am now unsure if I want that official diagnosis, or as I call it “labelling”
I don’t want that officials diagnosis to potentially affect his life, as people can be prejudice and have misinformed views of what autism is
So I was hoping for advice whether I should or shouldn’t do it, and if any other parent is in the Same position ?? i have spoken to WESAIL, WISENDSS they have said it would work in Henry’s favour to do it, but im Still not 100% sure
thank you for taking the time to read my message
Lindsay
Yes, get him diagnosed and make sure you claim all the benefits that you can for him and put the money in a high interest savings account. Most of us are unemployed or underemployed. It is hard to get benefits as an adult. If you have any suspicions get him diagnosed and get all the money you are entitled to. DO NOT IGNORE THIS ISSUE.
ah its good you put thought into how it will effect his life though.but also bear in mind if he doesnt get a diagnosis that may also effect his life too as if he cant act "normal" or whatever and sticks out and it is obvious or a thing a employer sees or doesnt like yet hasnt got a diagnosis then without a diagnosis theres no protection and no "excuse" or reason for his behaviour as the third party would like to say. and without excuse/reason then he gets targeted more and theres no protection for him. so a diagnosis would provide more protection than without as far as i see it...but yeah it can also be used against him too such as in another thread where someone states that a defence against a claim they have is being called out and denied due to their diagnosis in which their kids diagnosis are making it out they was already emotionally harmed and anxious... so it can actually work that way too..so its give and take on both ends.... but in large id say its likely dependant on how your son is.... if its a glaring issue thats going to stick out and the difference will be noticeable to future employers, then he needs a diagnosis as a excuse/reason for that employer as protection because if theres a glaring difference without a excuse/reason like a diagnosis then they will freely just get rid of him even if they know he may have a undiagnosed condition, theyd jump to get rid of him if theres no diagnosis as no diagnosis means no protection and no protection means employers will seek to get rid immediately or bully him out. so if it is a thing that will stick out in the future id say he needs it, so its all on how your kid is and how you guess he will cope in the adult world in the future.
I also think it would be a good idea to get an official diagnosis. It will give your son more protection and security and he will be legally entitled to reasonable adjustments. I wouldn't worry about the label too much- you can be selective about who to tell about the diagnosis if you are worried (it's true sadly that there is a lot of misunderstanding and prejudice and people might not always understand or have misconceptions). I was diagnosed at age 25 only and I really wish I had known sooner- I think it would have helped me understand myself and would have avoided certain issues and challenges. I knew I was different but I did blame myself for not trying hard enough to socialise etc. and I put the blame on myself. I think it really would have helped to know that I am autistic earlier on.
Please get the diagnosis.
All of these support things are exceptional to get without the diagnosis, but if he needs support in the future, a label is really helpful.
The paperwork needs to be in order for most government funding, and a diagnosis is a really good way of doing it. This is about him getting support in his later school life and his working life. Which he won't get without a diagnosis.
All it is is a way to frame his differences, he'll still know he's different if you don't, he just won't have the support in place for it.
He also won't have as much protection from discrimination if you don't get the diagnosis. People discriminating against 'being weird' is not a protected characteristic, discrimination due to autistic traits is.
I hope this persuades you that the benefits far outweigh any perceived risks, but I'm happy to answer any questions you may have if you have further questions.