Updated: Jul 30
It can be difficult for autistic children to access an appropriate education and challenging for their parents to navigate the various paths to get their child an education that meets their needs. No one wants their child to just survive in school, all our children should be able to thrive in the right setting and environment with teachers that understand them as individuals.
Signs your child is struggling at school
If your child is struggling at school, it will help to try and find out what their difficulties are. They may say they 'don't know' how they feel, or they may not be able to communicate this to you. However, there will be signs if your child is struggling, for example they may complain of headaches or tummy aches, they may be upset and begin to avoid going to school. It can help to write down their day and see if you notice any patterns as to when they are struggling. Their teachers may have noticed difficulties at school and want to have a chat with you about how things are at home. “But they seem fine” – Autistic Masking
For lots of autistic children there can be a big difference between how they present at school and how they are when they are in their safe space at home with you. This is often the result of 'autistic masking' when either consciously or subconsciously children (and adults) try to fit in with their peers. If your child is masking, then their autistic needs and ways of regulating are not being met and long term this can cause further anxiety and potential mental health difficulties. This scenario can be likened to the analogy of the child being like a coke bottle that is gentle shaken throughout the day as various events and stimuli mount up inside, then when they get home, they feel a sense of relief as the pressure is released and they are back in their safe space with you. The issue is that by this point too much has often happened during the school day, and they have often gone past their window of tolerance and are unable to regulate. This is when after school 'meltdowns' or 'shutdowns' may occur because of the social overwhelm they have tried to control all day at school. There are many YouTube videos explaining this and also a great description of this here: The Coke Can Effect That Explains Autism Meltdowns (themighty.com) For other children their efforts to try and engage in school may be more obvious to notice in the classroom they may be described as having 'challenging behaviour', these children are also showing that they are struggling. They may not be able to join in all their lessons, they may have difficulty sitting and concentrating, they may not be able to regulate their sensory system in the way that works for them at home so they could be seen as being 'disruptive', there may be noticeable difficulties and differences when they play and interact with other children. In contrast the child that sits in class quietly and then appears to be a 'different child at home and is having meltdowns and shutdowns' is struggling just as much as the child that is displaying more obvious struggles in class, both children (and all the children in-between these groups) need more support and understanding. For parents trying to support children that are experiencing difficulties at school it is hard; you can be left feeling helpless and like you don't understand what is happening to your child or family. I know the more I felt like I was trying to help the more difficult the situation sometimes became. The impact goes beyond the child that is struggling at school and can affect siblings, relationships, and careers. If this all sounds familiar, then it is a sign that your child needs support, and things need to change in their school environment. The people working with your child need to understand how best to communicate with you as parents to help support and meet your child's needs through the day. You need a collaborative approach with the child, parents, teachers and other multiagency professionals.
All schools and teachers want to do the best for their pupils, and it may be that the school your child is in is not right for their needs. It is better if everyone is open and honest. Parents and teachers and multiagency professionals need to work collaboratively to find out what the child needs to feel more secure and happy in school, it may be additional support is needed, sensory diet adjustments or other accommodations. For some children it may be that you need to look into a different setting and look at alternative provision or another pathway for their education. It is not a failure of parents if they need to look at other settings and it is not a failure of any school to say they cannot meet needs. It is absolutely not the fault of the child if they are finding it difficult to achieve their potential in school or feel they are unable to attend school.
There should be no hierarchy when trying to meet needs. I believe schools are meeting the children's needs if they are able to support parents through the EHCP process, if they work collaboratively with parents and other professionals to find out what may benefit the children. Schools need to support parents to find alternative more suitable provision if a child is struggling beyond what they can provide as a school or what best meets the child's needs. No setting can be suitable for all children, which is why there are so many alternative settings and routes for education out there. If you are at the crossroads of feeling like you have tried everything and do not know what else you can do then it could be worth looking at alternative routes for your child's education. Rather than trying to battle and make a child fit into a school that is not right for them it much better to find an environment / setting / alternative provision that understands your child and where your child is able to thrive. Getting an EHCP
To get the best outcome and provision, your child's school may suggest your child is assessed for an Education Health Care Plan (EHCP), however if you have concerns you can also apply yourselves as parents via your local council. It is a needs-based assessment, so you do not need any formal diagnosis to apply. There is further information about applying for an EHCP on the IPSEA website and model letters you can adapt; (IPSEA) Independent Provider of Special Education Advice
If your child is struggling with school, you may feel very isolated as a parent but there are many local community groups and online groups for parents that are going through the same thing, you are not alone. It is important to understand that if your child is autistic then they are more likely to have additional anxiety and sensory processing difficulties and consequently school could be a difficult and overwhelming place for them to be. Unable to Attend School - NOT School Refusal I would argue that children want to do well when they can (R. Greene 2005), children do not 'refuse school', it is not a choice they are making, there will ALWAYS be an underlying reason of why they feel unable to go. It can be helpful to reframe your own narrative and understand that your child is 'unable to attend school' due to anxiety and autistic burnout they are not 'refusing', it is not their fault that they may be struggling or may not be able to attend, it is not a choice, and it is not the fault of parents either. Parents should not be blamed for their children being unable to attend school however this can and does happen in some circumstances. Schools have a duty of care and responsibility to ensure all children registered get an education. Recently there has been additional high pressure placed on schools to raise attendance figures, especially since Covid-19 Lockdowns when significant numbers of children found it hard to return to school (as highlighted in numerous news articles and in the government attendance publication May 2022 Working together to improve school attendance - GOV.UK (www.gov.uk). In some cases, this has resulted in parents being fined and prosecuted for their child's non-attendance. I have personally found the following websites and groups informative and supportive:
Local SENDIASS Services.
I am currently volunteering with Autistic Parents UK; there are lots of webinars and resources on the website that may be useful to have a look at for additional information and support.
Luke Beardon has authored a few books and amazing articles with the summary of his theory based around the concept of 'autism + environment = outcome' You may find it useful to have a look at some of his work to help reframe your own understanding of Autism and children's needs.
The Autistic Girls Network (it's not just for girls!) also produced this excellent resource of accommodations that you may want to consider for your Autistic children in school. However, I do think that if a considerable number of accommodations are needed then it is worth questioning whether that school is the right setting for your child and the consequences of needing so much extra support just to be able to go to school.
Different Pathways There will be lots of information on your Local Authority website under their 'Local Offer', there are many alternatives to local mainstream schools (with support via an EHCP if needed), resource bases or special educational needs (SEN) settings. There are also a growing number of alternative specialised settings that you may be able to apply to (with possible funding via your child's EHCP). EOTAS (Education Other Than At School) may be worth looking into for children needing home tuition or other alternatives routes for their education. For some families, the option of (EHE) elective home education or a combination of various provision may work out best. There are a lot of different options to explore, even though your child may be struggling now it doesn't mean this will be forever!
Whatever path you choose it need not be forever, if things don't work out you can make changes. Remember if your child is struggling in school, you are not alone and there is support out there to help you along the way. Please look at some of the links posted above and ensure that as a parent you have enough support too. You can get through this! Autistic Burnout: A Family Guide is available here: Shop | Autisticrealms
**Article written from my lived experience as a parent and teacher. Knowledge gained through various personal research and neurodivergent communities.
Autistic Realms is a space for parent support and teacher guidance. I am not a medical professional or therapist.
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