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Daughter struggling at school

NAS85182

Hello, I have an academically smart  daughter who was diagnosed with  ASD in primary school in KS1. She has now begun high school and we are struggling tremendously. She has never had an EHCP because she functions well at school except for the sensory and social aspects. She has struggled greatly with the sensory aspects of school since starting high school. It's particularly loud for her. She is unable to perform well in the lessons due to the commotion and the manner in which they are taught in comparison to primary school.

She doesn't drink at school since the bathrooms are locked and she is afraid to use them. She also does not eat at school, which certainly does not help her mood. She refuses to attend school on Wednesdays and appears gloomy and disconnected from everyone  since beginning at this school I assume she's very over stimulated . The school can't put anything in place, they say, because she's academically able to function , so all they provided her was a seat at the back of the class and that she can wear her ear defenders during the movement of lessons , which baffles me. Apparently, even though she has a diagnosis, she requires an EHCP to put more things in place. My daughter was likewise diagnosed with ADHD six months ago as our doctor was concerned this was over looked when she was diagnosed with ASD in her early years . 

The school agrees that she needs more, but they can't do anything without the EHCP. Could someone please help? Can anything be done without this legally binding document? Isn't the fact that my daughter has an official diagnosis of Asd and ADHD enough for the school to put everything in place? Is there not a law that they should obey if your child has special needs?

  • in reply to NAS85182

    I can understand her not expressing feelings, my son struggles with that and at times has messaged us for help. 

    Regarding the noise, some schools have a card system where they can show a card if they need to go somewhere quieter.

    Regarding Wednesdays, I think after two days of masking and coping with sensory overload the body can need a break. When the last teacher's strike it helped my son to have that break.

    I agree about putting things in writing. We had problems with verbal meetings at Primary as later they denied what had been said. I have heard suggestions from others if you have an in person meeting to email them after to confirm what was said. 

    Regarding the meltdowns due to her not coping in school, my son had many problems with this in Primary. We kept a diary of anything that happened in school and when meltdowns occured. We originally applied for an EHCP because of his anxiety. At this time he was not diagnosed with ASD. Using the links between what happened in school and the subsequent meltdowns helped in eventually getting an EHCP. 

    It might be worth looking on the school website at their policies which could be referenced in emails to school. I would also refer to wellbeing.

    I hope you are able to resolve the issues and the school can improve her experience.

  • It makes me feel so sad to read this. Your daughter is being let down by her school and the education system. This issue of the EHCP is so infuriating. A child either needs help and support or doesn’t - not having an EHCP shouldn’t be used as an excuse not to give children the help they need. As you say - your daughter has a diagnosis of Autism and ADHD - that in itself clearly demonstrates that she has extra needs. It must be so frustrating for you all - I’m so sorry. Incidentally- my son has an EHCP and he still didn’t get the support he needed - so it’s no guarantee even when you do have one.

    My instinct in these circumstances is always to put your concerns in writing - and to send it to every relevant person you can think of. Be clear about what your concerns are and what you are asking for. Autism is a disability- and institutions have an obligation and a duty to make ‘reasonable adjustments’ for a person with a disability. Think about what adjustments the school could make for your daughter that would be helpful for her. If your daughter is willing to discuss what she feels she needs then that’s the starting point. What is making her unhappy, what stresses her out, where are the pressures coming from regarding her time in school. What does she need? 

    I know it’s important to keep a positive relationship with the school - but you also have to be firm about their responsibility to support your child in a way that enables her to learn and thrive. It’s not ok for them to just say “she hasn’t got an EHCP so we can’t help her” - they can’t wash their hands of her in that way.

    And as for the issue with drinking and the bathrooms being locked - that’s a totally unacceptable situation and has health implications for your daughter. I would fight that 100%. What about girls who are having their periods too? It’s outrageous. I’d write a letter to the school and the LA and I would also copy in your MP. 
    We have to stand up for the rights of our children. They only get one chance at their education and they deserve a certain standard of education and a healthy environment where they are well supported - and sadly too often this isn’t the case. Good luck!

  • NAS85182 said:
    She doesn't drink at school since the bathrooms are locked and she is afraid to use them

    This is a health and safety issue I would bring up with your GP. This can cause all kinds of serious problems including kidney problems. I would not allow my child to go to a school where they couldn't relieve themselves when they needed to without embarrassment, especially considering how many Health Issues Autistics actually have. I would raise this in the community and take it to a solicitor if need be. 

    However I can be understanding with how stretched schools are with resources and teachers are with their workload and demands. But schools are poorly built, not acoustically treated, some without proper ventilation. Children who are not dulling their senses like their peers can be overloaded from Volatile Organic Compounds from perfumes and cleaning agents, and anything off-gassing in the building, from reverberations and piercing frequencies, from flickering and unnatural lighting (LEDs / fluorescents - see lightware.org) and from petroleum based fibres which their uniforms are typically made from, micro-threads of plastic, which if caught in a fire would just melt on to the skin. 

    I want to be specific about safety because this is the most important. I might see if a teasonable adjustment can be made for her to learn and do her work at home if she's willing to be disciplined with it, and then perhaps for her to check in at reasonable intervals (even if once per week).

  • in reply to Homebird

    Isn't it interesting that your kid dislikes Wednesdays as well? Maybe they are just overstimulated on Wednesdays.The water problem arises because the school restrooms are locked until social time, resulting in a huge wait, and she is frightened to drink water at school as a consequence. She generally complains about the loudness, so she gets to leave a few minutes sooner to beat the crowd. Nonetheless, it seems that her high school's classes are more noisier.She isn't very skilled at expressing feelings, so she doesn't say much. Instead, she has major meltdowns that evolve into panic episodes that may continue for hours. I've had a few meetings with the senco, but I'm constantly informed they're limited since many of the difficulties are sensory. which I understand since you can't truly alter the surroundingsI'm at a loss for ideas myself. To be honest, I'm simply questioning whether mainstream is the proper place for her.

  • I feel for your struggles. My son is in High School, has ASD & ADHD but is at the lower end of the ability range. He does have an EHCP but sometimes struggles with adjustments, not wanting to look different. 

    He rarely eats much at school because the ADHD meds suppress his appetite. Regarding drinks he takes a bottle of water which is the expectation. Is it possible for her to take her own bottle?

    Your comment about Wednesdays is interesting as my son often misses Wednesday as he feels too unwell due to anxiety. A whole week is often too difficult. The fact that she can't manage a whole week shows that more support is needed for her wellbeing.

    High School is so different from Primary with so much change to negotiate. I am wondering if she has been able to say the things she finds particularly difficult. For example, is the noise in the corridor on changeovers hard, but would be easier if she could leave class before others or are lunchtimes too noisy and she would benefit from a quiet activity? I am thinking if you can make any other suggestions to the SENCO they might take them on board. 

  • Hello NAS85182,

    I'm sorry to hear that your daughter's school doesn't want to put anything in place to help her. Hopefully the NAS community will be able to help you, but in the meantime you could check this page on the NAS website: https://www.autism.org.uk/advice-and-guidance/professional-practice/adjustments-sensory

    Wishing you well,

    Karin Mod