autism, masking and burnout in school

Hi there, I have just joined this community as the mum of the most WONDERFUL 16 year old girl who is only now heading for an autism diagnosis which is all but confirmed on paper.

I hope it's OK that I am posting this on more than one of the forum groups as I'm still finding my way around.

She has had a terrible time and we are only just coming to understand why. I am keen to turn to the autistic community as there is so much I need to learn, so you will probably get frequent threads from me. But for today, my topic is school.

I'm guessing my daughter's story is familiar to many of you. She is highly intelligent but they are discovering that she has considerably physical difficulties with things like motor skills and she struggles with social skills, dealing with complex social situations, etc etc. She also has a very complex sensory profile which is currently being assessed.

Long story short, she struggled a bit in infants and junior, then she went to a secondary grammar, threw herself into it at a million miles an hour, took part in everything, tried really hard to make friends and did for a short time, then she what I have until recently called a breakdown (I have now learnt this is more accurately termed autistic burnout) had to take considerable time off and things have never been the same for her. She finds the school environment incredibly difficult to cope with. She becomes unbearably anxious. She is exhausted at the end of every day. She has no friends and none of the other kids engage with her socially. But she still does well academically. The most frustrating thing is that she does much better academically learning remotely. She has loved lockdown. If it were two years ago I would consider changing her path, but she is just coming up to GCSEs and she has a deep passion for learning and a career path for which she needs those grades so I feel like taking her out now would just make her feel that the past 4 years of battling have been a waste of time.

The school are actually incredibly kind and supportive, but I believe their knowledge only goes so far. They think that because she manages to go in and do her lessons and stuff that she is "resilient" in school. I now understand that she is absolutely expert at masking (sorry, I know that term is not considered ideal but it's the only one I have) and at home I can see the damage it is causing her - burnouts, meltdowns, shutdowns etc. School has already confirmed there will be no option for her to continue learning remotely when they go back in and she would be heartbroken to lose access to some of her teachers. I can only think that my best tactic is to try and educate the school on what life is really like for an autistic person from a sensory and social perspective as I think that would help them to try and put some things in place that might enable her to just about get through it. And then we can take stock armed with the knowledge we now have.

So, my question is, would anybody on here be willing to share with me your experience on how you found attending school? I do ask her but she finds it hard to explain and much easier to say yes or no if I ask her specific questions - but often I don't know what I should be looking for. I thought that perhaps if I could gather a few real life experiences (anonymously, of course) that describes how it really feels to be an autistic person in an NT environment, it may help the school to step inside her head and see hw intolerable school is, and we may be able to find ways to mitigate that.

I have found a number of articles but I was hopeful that some of you might feel kind enough to be willing to share your stories so that both myself and the school can understand her perspective - or at least know the right questions to ask.

Also, if anyone has any advice at all as to how I can support my daughter I would welcome it. For so many years I didn't see what was right under my nose and as a result most of my parenting has been completely misguided. Now that I'm starting to realise what's happening I desperately want to put that right, show her that she is loved and accepted, help to make her environment as easy as I can, and support her in becoming the absolutely awesome young woman I know she has the potential to be.

Sorry for the long post, I'm new to all this so still learning what's acceptable to this community.

Thank you xx

Parents

Nikki over 4 years ago

Hi StillLearning, I completely empathise with your situation. I have a primary school son who attends mainstream and hates attending school. He loves being at home. At school he works very hard to be normal and works above the expected standards. So he doesn't get much help. Thankfully, we were advised by a psychiatrist friend to apply for an ehcp and look for a specialist school. We have just begun the process and are in the hunt for a suitable school. My son struggles with the strain of putting up with sensory overload, social interactions , emotional regulation, transitions and has difficulty interpreting people. This is pretty much the case with most ASD kids, but they mask in public. Mainstream schools do not understand ASD, especially if child is bright. They will not get much support. I think a specialist setting would be better for your daughter, given the difficulties. But the only problem is without an EHCP entry into most specialist schools is impossible unless you are ready to shell out eye watering levels of money in fees. Given that she's refusing school, I would say push for SEN support and apply for an EHCP. Look to IPSEA for EHCP advice. They are very good. Also email the NAS team for advice. They are good too.

Hope things work out for your daughter. Good luck! xx
StillLearning16 over 4 years ago in reply to Nikki

Hi FSCRthank you so much for this advice. We are looking at a parental application for EHCP right now. The school believes we will struggle because she is not falling behind academically, but the advice I have been given is to try and augment that by emphasizing the health side of it. Like you, I am fast coming to the conclusion that a mainstream school just isn't equipped to meet her needs - or rather to be able to adapt the environment to meet her needs. It's so hard isn't it? I do hope you are successful in searching for the right setting for your son. If you can achieve that for him now I can promise you that you will potentially save him years of heartbreak later on. May I ask one more question? How did you go about looking for a suitable school? Obviously I research online but I find that a lot of the results that come up are from independent schools because of course they're sponsoring their search results. nd I fear we wouldn't be able to stretch to that financially. Did you find any registers or resources that helped you to know where to start? Thank you again.
Nikki over 4 years ago in reply to StillLearning16

Hi StillLearning,

In terms of EHCP, 90 percent of the schools are negative. But the fact that your daughter is a school refuser serves as evidence that there is something wrong and she needs help. Please collect all the evidence which relates to absences and breakdowns impacting education and attendance. Also you will need an educational psychologist's (EP) report to help you ask for the right type of support in the EHCP.

Regarding schools, I agree it's very tough to find a setting that accommodates academically able kids. Most of the schools usually specialise in dyslexia or profound needs. There's this directory which I bought on Amazon which has a list of specialist schools:

Which School? for Special Needs 2019/20

Jonathan Barnes (editor)

The 2020 -21 should be available as well. The schools I have looked into has been through word of mouth and recommendations. Finding the right school is tricky when the child is bright.

I know of a few parents whose children have such high anxiety that they opted for home schooling. I know home schooling wouldn't suit us. My son would not be able to do his classwork unless there was a teacher monitoring him. But I would say do take a professional opinion. My son's clinical psychology tests gave us such a useful insight into his level of intelligence and how he's deficient in some areas of cognitive function which makes it hard for him to focus and work independently.

Good luck ! xx

Reply

Nikki over 4 years ago in reply to StillLearning16

Hi StillLearning,

In terms of EHCP, 90 percent of the schools are negative. But the fact that your daughter is a school refuser serves as evidence that there is something wrong and she needs help. Please collect all the evidence which relates to absences and breakdowns impacting education and attendance. Also you will need an educational psychologist's (EP) report to help you ask for the right type of support in the EHCP.

Regarding schools, I agree it's very tough to find a setting that accommodates academically able kids. Most of the schools usually specialise in dyslexia or profound needs. There's this directory which I bought on Amazon which has a list of specialist schools:

Which School? for Special Needs 2019/20

Jonathan Barnes (editor)

The 2020 -21 should be available as well. The schools I have looked into has been through word of mouth and recommendations. Finding the right school is tricky when the child is bright.

I know of a few parents whose children have such high anxiety that they opted for home schooling. I know home schooling wouldn't suit us. My son would not be able to do his classwork unless there was a teacher monitoring him. But I would say do take a professional opinion. My son's clinical psychology tests gave us such a useful insight into his level of intelligence and how he's deficient in some areas of cognitive function which makes it hard for him to focus and work independently.

Good luck ! xx

Children

StillLearning16 over 4 years ago in reply to Nikki

Thank you so much to both of you for some great sound advice here. Lots of things for me to investigate and I will get started straight away! Thanks so much...