My 12 year old daughter is struggling with going to school, she has missed so much time already.
I'm basically begging school foe help but not getting much. I don't know what to do, I can't drag her there kicked and screaming as that will not help her at all. She struggles with social side and friends. I don't know what to do? Where to go for help? She is a very unhappy 12 year old
Hi Budburst, thank you for your kind comments. I'm sorry to hear you've been pushed into having to find support privately, finding educational help is something that should be available for everyone.
One thing I found is that both the school and local authority seemed to be very ignorant of educational laws, and had to study several websites such as IPSEA, Childlawadvice and SENDAdviceSurrey to tell them what they should be doing. And as I mentioned earlier when the local authority didn't listen to me, I took my complaint to the LGSCO who gave them a stern telling off.
It seems very unfair you can't access extra help as you've taken your daughter out of school and put her in a public school, can you not apply for a EHCNA or EHCP yourself? When we applied we hardly got her school involved as my daughter was never there so they wouldn't have been able to say anything anyway. I used her private counsellor and GP to write letters we could use as evidence. Some EHCP's end up sending children to public schools and make the LA to pay the bill so it should really work both ways.
It's good to hear you have family members nearby. Unfortunately my daughter doesn't have any siblings and doesn't get on with her cousins nearby. She does have cousins in Australia she sees on Zoom a couple of times a year, so hopefully one day will be able to go and see them.
Keep trying with the social experiences, my daughter actually managed to go to meet a couple of other children with the help of her educational mentor a couple of days ago. We thought she'd have a shutdown and refuse to go but are really proud she managed.
Take care and best of luck!
Wow, it's great to hear your story and I'm so sorry to hear of all the years of difficulty you and your family have been through. The more I reach out to the autistic community, the more of these stories I hear. We're being so let down by the rest of society, it's heartbreaking really. All these gorgeous, wonderful kids having to go through this awful process. And then us as their parents facing this monumental battle, all these extra layers of hard work needed to pick up the pieces and try to have our kids comply with the dictates of society. And we do it all behind closed doors. The rest of them out there haven't a clue what we're all going through.
Sorry, my little rant doesn't help anything. But I just want to say that my heart goes out to you. I can't get my daughter out to any local groups either for the same reasons. I'm lucky enough to have a number of different family members near by, so we're trying to get her out to visit them on a semi regular basis, so she's getting some positive social experiences. One day, I'm going to try and get her out to the local library or other public places. At the moment even that fills her with panic. She's so stuck with worries about how other people perceive her - how she dresses, that she's meant to be in school, that her legs are too fat, her face too ugly (she's gorgeous, normal weight).
We've officially pulled her out of school now. We have no help from official channels because we already pulled her out of mainstream school and pulled together the money to put her in a smaller public school, thinking that might help. Apparently this means we've forfeited any help from the usual channels - no option to even go on an autism assessment waiting list as this has to come from school and private schools can't refer. So we've paid for an asd assessment, which came back overwhelmingly positive. But an EHCP plan is meaningless if we can't get her into school. It doesn't sound as though it will be possible to get one anyway because she's at a public school. They just say that any extra help needed in school needs us to pay extra for it.
Anyway, you are absolutely right. We can share our sad stories, but at the end of the day, all you can do is keep trying your best and do whatever you can as a family to just keep your spirits up. If they're happy at home, that's actually way more productive than years of misery at school. It's not possible to learn much when your body is constantly in fight or flight mode, so it's completely counter productive to be forced into school. Good luck to all of you, I wish you all the best!
I love this bit..........................Oh well, you have to just keep trying and do your best, the main thing is she's very happy at home!
Your daughter is very happy at home. Dont underestimate this. She more likely thrive in life despite mussing school x
Hi NAS85823,
Sorry to hear your daughter is struggling with school attendance. My daughter's been struggling with school attendance for almost the last 3 years, she's 15 now so started at a similar age. She was having problems in junior school but the refusal only started when moving into secondary school, struggling socially, not having any friends and started suffering from anxiety and panic attacks.
Despite asking her school for help we just seemed to be threatened for breaking the law, as you say you can't drag them in kicking and screaming, and besides the whole experience of just trying to encourage her into school, it was making her extremely distressed and depressed.
The first thing we did when was to see our GP to write a letter to explain why she was having problems going in (severe anxiety) and a referral to CAMHS to get the school off our backs.
Then the next battle started trying to get the inclusion service to help us get her some alternative provision/education as she was missing so much. I got in touch with IPSEA and was told to mention Section 19 of the Education act which the inclusion office, but they said didn't apply to my daughter as she was not signed off school. This went on for 12 months with no education at all, and I took a complaint to the Ombudsman for failing to provide her with an alternative education - the outcome being financial compensation for the year she had missed and made to provide an alternative provision which has been consisting of a teacher coming out to provide 1-2-1 teaching at home a few days each week.
Two long time scale attempts were made by a local youth support service to get her back into school but both attempts failed.
We applied for an education health care needs assessment which was refused, had to appeal through tribunal, hearing didn't happen as the LA backed down just before it, and the assessment carried out.
All recommendations given by the educational psychologist would only work if she was in school and as she wouldn't go in, waste of time.
Now in a position of attending another tribunal appeal for refusal to issue EHCP in a few weeks but had some luck getting a positive ASD diagnosis last month from an assessment CAMHS had requested two years ago.
Problem we will face if we do get the EHCP is finding a school that she would be willing to go to as she's lost so much faith in the education system. May well end up having to request 'EOTAS' from the LA if all else fails, both my wife and I have to work so no chance of arranging home schooling.
We are getting some help from the LA now who are helping her social aspect as she never sees any other children her age. We have tried taking her to local groups of other autistic children at the weekend but she refuses to go as she feels she won't get on with them.
Oh well, you have to just keep trying and do your best, the main thing is she's very happy at home!
I feel for your daughter. I wouldnt go to school fir my mum. I was about 14. I couldnt explain why. My mum was taken to court and fined 10 pounds! I then went back to school.
I dont think this can or should be forced. I would like to say give her time, but i kniw she is missing out on her education. Just by chance a 17 year old young lady with ASD started working in a cafe. It is her first job. She was nervouse. She has done brilliantly and is going to be a goid worker at whatever it is she decides to do in her future. She told me when she was 14 she refused to go to school. She was referred to CAMHS and prescribed medication attends college. Just wanted to share to give you some hope.
People should never underestimated the effects of an ASD. They are very real. Go easy on her and yourself x
My daughter is still waiting to be diagnosed but we have exactly the same problem. She kicks and slaps me, screams and refuses to get dressed for school in the mornings. It's exhausting! Budburst, your reply is fantastic! And such an eye opening analogy. Thank you x
I'm in exactly the same situation as you - 13 year old autistic daughter has been home on and off since feb - mostly off over the last term. Massive anxiety, panic attacks, struggling socially, with sensory issues. She's very recently diagnosed - as a direct result of what's happening with her right now. It's really tough. I'm not sure I have any answers, but share your pain on this. It's really difficult to navigate.
However, there is tonnes of potential help out there. I haven't found it possible to access any help at all via the official routes - nhs, cahms and so on. I've heard that even actively suicidal kids have been offered nothing more than leaflets by camhs as they are so overwhelmed, that is all they have to give.
But I've had success contacting the parenting team at my local council - they run courses for parents with difficult kids and this ended up being a brilliant way to meet other parents with autistic kids struggling in the same way. The course facilitators were great and very well networked, so a good gateway to other services.
I've also had a lot of useful advice from a local autistic parents facebook group - ours is called parents supporting parents with autism. Again, I've been amazed from this group at how much is going on out there in terms of support. You may be able to find a range of social groups for autistic children and a variety of therapeutic organisations offering mentoring in a range of creative ways.
There are schools set up for autistic children and some are better for girls than others - again, it's worth digging around on facebook groups or through other networks to hear local recommendations. However access is another hurdle. I haven't tried this route, but have heard it can make an amazing difference if you're one of the lucky ones to gain access. And if you can find a school where the other kids are a good fit for your daughter.
If home schooling could be possible for you, there are online schools with tutors for every subject and a form tutor type staff member who helps you coordinate everything - so very much school from home and you pick and choose which subjects you want to take and can often adjust the pace to suit your family. Wolsey Hall Oxford or Kings Interhigh are a couple I've looked at. Both of these run on a pay per subject basis. There are also lots of free resources through Oak Academy, for example, for learning secondary school subjects from home - can be useful for keeping up with subjects from home during temporary breaks from school.
I cannot recommend enough the podcast Tilt Parenting. This has become a major lifeline for me in learning how to support my daughter and keep myself propped up too!
The reality of it for us has been that my daughter won't accept any help and won't go along with any changes at school. She desperately doesn't want to go to school, but desperately doesn't want to officially leave and go for home schooling instead - she feels like this is breaking the rules and giving in and she finds that extremely hard to do. We're really stuck. The school system is massively failing our kids.
Someone told me this analogy the other day and it's stuck with me - imagine asking a neurotypical family to place their neurotypical child into a 'special school' full of autistic kids, so they're the only one who thinks and functions as they do. You just wouldn't do it. And then imagine they're expected to behave as though they're autistic, even though they're not at all and if they can't do a good enough job of this, they get bullied or ostracised by the other kids; they get treated as though they're odd or willfully badly behaved by their teachers. They'd end up with a really distorted view of themselves, their confidence would crash - you just wouldn't do this, it would be really cruel. This is what school is asking of our kids every day. Sorry, that doesn't help, but I feel more and more strongly that we need to listen to how upset our kids are by the school system and we need to fight their corners. They're being hugely let down and expected to carry such a burden.
A regular-school environment can become an autistic child's traumatizer; the trusted educator the abuser.
As a boy with an undiagnosed autism spectrum disorder [not to mention high sensitivity and resultant also-high ACE score], my Grade 2 teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped.
I cannot recall her abuse in its entirety, but I’ll nevertheless always remember how she had the immoral audacity — and especially the unethical confidence in avoiding any professional repercussions — to blatantly readily aim and fire her knee towards my groin, as I was backed up against the school hall wall.
Luckily, she missed her mark, instead hitting the top of my left leg. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her dark sunglasses when dealing with me.
But rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’.
Perhaps not surprising, I feel that school teachers should receive mandatory ASD training. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition (without being overly complicated).
If nothing else, the curriculum would offer students an idea/clue as to whether they themselves are emotionally/mentally compatible with the immense responsibility and strains of regular, non-ASD-child parenthood.
It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice.
And how “camouflaging” or “masking,” terms used to describe ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase.
Of course, this exacerbation is reflected in the disproportionately high rate of suicide among ASD people.
As for my own autism-spectrum disordered brain, I'm sometimes told, “But you're so smart!” To this I immediately agitatedly reply: "But for every 'gift' I have, there are a corresponding three or four deficits." It's crippling, and on multiple levels!
While low-functioning autism seems to be more recognized and treated, higher-functioning ASD cases are typically left to fend for themselves, except for parents who can finance usually expensive specialized help. … But a physically and mentally sound future should be EVERY child’s fundamental right, especially considering the very troubled world into which they never asked to enter.
Dear NAS85823,
Thank you for sharing this with our community. While we are waiting for the community to respond, you may want to take a look at our page about education, https://www.autism.org.uk/advice-and-guidance/topics/education
And here's our page about making friends, which provides guides for autistic people, and parents on making friends and socialising, https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships/making-friends
Thank you. I hope it helps.
Best regards,
Eunice Mod
