Published on 12, July, 2020
Hi everyone
My 11 year old was just diagnosed as autistic yesterday by Healios on behalf of the NHS after what felt like an absolute battle since she was 7. We really struggled to get her school to listen to us and I genuinely feel like they failed her on so many levels to the extent we had to withdraw her and begin home education. This was a complete last resort for us but she had serious anxiety about attending school with it being quite a large one with about 300+ pupils. It got so bad to the point I literally have scratch marks on my walls from her trying to cling to anything to stop us from taking her to school. We refused to put her through this every day so I resigned from my job and we withdrew her from school.
Reading the draft report last night made me so emotional, even though I knew deep down already that she was autistic but just reading it from a professionals point of view and knowing we had finally been listened to and her needs acknowledged. One part of the report really angered me and that was the feedback from the school. They claimed that they never noticed any issues with her and basically we put it all in her head because she went into school one day and told her teacher she was autistic. They also claimed that they never seen any reason to implement further strategies, despite the fact it was them who referred her to CAMHS for her assessment. They had also tried later start times for her, half days, someone from pupil support coming to collect her, referring us to educational welfare officers, child planning meetings with school, school nurses, educational psychologists etc. They threatened to suspend her once because during a meltdown she lashed out at another child and threw a chair, also called us in for a meeting because during another meltdown during a P.E lesson she repeatedly banged her head off a wall. They never mentioned ANY of this in the report and it's just made me so angry!
What concerns me now is she is obviously supposed to be attending high school after the summer but we were hoping we could have her attend a local school that is autism based but I'm unsure how we would go about that now that she is home educated. I imagine usually the school would arrange these things during P7. We've managed okay the past year and a half with the home education but with high school looming I'm doubting my abilities to be able to give her the education she deserves.
I don't really know what the point in the post is to be honest. I guess I just wanted to post in a place where people might actually understand what we're going through and even maybe get some advice in regards to the education point.
Thank you if you've read this far and sorry for rambling
Hello MaisieMoo,
Thank you for sharing this with the community. I'm sorry to hear that you had such a hard time getting support for your daughter, but glad that she finally has her diagnosis.
You may find the following information useful.
The following page contains a lot of helpful information about education for a child with an autism:
https://www.autism.org.uk/advice-and-guidance/topics/education
This includes information regarding getting extra support for your child in their education setting. You can search for schools that cater for children with an autism spectrum disorder on our Autism Services Directory:
https://www.autism.org.uk/directory
You may want to contact our Education Rights Service who provides information, support and advice on educational provision and entitlements. Please see the following link for further information:
https://www.autism.org.uk/what-we-do/help-and-support/education-advice-line
I hope this helps,
ChloeMod
Well - it’s so great that your daughter has a diagnosis - that a huge step and so important and valuable. What a shame it took so long (my youngest was diagnosed at 10 and my eldest not until he was 26). Looking back I realise that my youngest was very obviously autistic - so the fact he wasn’t diagnosed until he was 10 seems pretty outrageous really. Like you we had the most terrible time dealing with schools who just didn’t know what they were doing. We had dreadful battles with them. My youngest also had selective mutism due to the distress caused by starting school. i can very much relate to what you describe here - although I only came very close to home schooling but never had the courage to take that step as I didn’t have the confidence to take that leap. Well done you for doing what I didn’t - because I think it can often be the best option. Anyway - I think lots of parents of children with autism have these extremely difficult relationships with schools and L.As because the support is so often so inadequate (verging on negligent at times). But looking back I’d only so much use.
Has your daughter got an EHCP? If she doesn’t already have one I’m not sure where you stand - or if you can get one while she’s currently not got a placement in a school - but it’s something that’s important if you can get one. It gives her a measure of protection to have her needs met by a school - although it’s not as effective as it’s made out to be. Have you approached the school that is your preference to request that she attends there? And if so what was their response?
Well done for persevering for your daughter! I don't know the answer to your question, but you might find it by searching the site. Alternatively, the Citizen's Advice Bureau might be able to help you. Even if you home schooled her for primary school, the local authority still has the obligation to find a school for her if you want her to go back to the school system.