Solving the SEND Crisis
Introduction
I am a late diagnosed autistic mother to a six-year-old daughter with SEND, who is currently going through the EHCP process and is on the autism diagnosis pathway. I would like my evidence to be anonymous.
I’ll mainly be covering my thoughts on Support for children and young people with SEND, with a small comment on Current and future models of SEND provision
Support for children and young people with SEND
Our experience
Like most of the 67,000 members of the ‘Not fine in school’ Facebook group and the 29,000 members of the ‘Autistic Girls Network’ group, my daughter’s needs fit somewhere between mainstream and specialist. It is here I think the efforts of reform need to be prioritised because there are thousands of children in a similar situation to us:
- Daily sensory overload from being in a class of 30 children in primary school, with local options of high schools with 1,000 plus children meaning her sensory needs will continue to not be met in state mainstream.
- The daily sensory overload, the toll of masking this and the anxiety caused by having to go into an environment every day that does not meet her sensory needs has left my daughter with burnout. At just six-years-old she has been left in such as exhausted state that she has been unable to tolerate wearing clothes or leaving the house for weeks on end. She has suffered a whole range of severe emotional, sensory and functioning symptoms on top of this that have been extremely worrying. Screaming at the feel of water on her skin in the bath, OCD in the middle of the night, crying at the thought of having to go to the toilet, things that have not been a problem until she hit this exhausted spell. She is a bright, academically able girl who scored as one of the highest in the country for her vocabulary skills. She has missed six weeks of school this academic year and is terrified of returning to a full class environment.
- We have experienced a mainstream primary school which says it has lots of training around autism and understand masking in autistic girls but the reality is her needs unable to be met there and we are left to pick up the pieces before and after school, at weekends and holidays with her left unable to do most things outside school because of the exhaustion, sensory overload and anxiety that has become her daily life.
- School has put in measures to try and help but these are sticking plasters and have not solved the problem.
- Even the support we have had – fidget toys, option to miss assembly, late start time, sensory circuits, meet and greet, ear defenders – we have had to really push for each time. We were told at each stage, she didn’t seem autistic, didn’t need a SEN plan, wouldn’t get an EHCP, wasn’t showing signs of EBSNA when I flagged the early signs a year ago. It seems to be the default of the school to parent blame and gaslight parents who are raising informed, realistic concerns about their struggling children. I feel we have only got the support we have because I have the skills to articulate the needs of my daughter and have paid for private assessments to convince the school of what I already knew and had previously told them were her areas of need. I hate the fact that there are other parents at the school I know who have less income and are less well educated whose children are going through similar struggles and aren’t able to push past the parent blaming the school throws at them. If my concerns were taken more seriously and acted on more quickly, then my daughter wouldn’t have reached the point she is now in.
- It is only because I have an extremely flexible and understanding employer that I have been able to continue working while caring for my daughter in burnout.
Ideas for fixing mainstream SEND inclusion:
- Focus on those showing signs of sensory overload and neurodiversity as these seem to make up the vast majority of those involved in the SEND crisis.
- Have options in each area of the country for mainstream schools that are smaller, with smaller class sizes. By this I mean class sizes that are 15 of less, and no more than about 200 in the whole school, primary and secondary.
- This may seem expensive but the reality is it’s cheaper than specialist schools, alternative provision, the mental and physical health issues that are caused to children and families from the stress of the current crisis, parents having to leave jobs to care for children, not to mention the legal costs of the thousands of tribunals and the fact these children may end up out of work when why are older, when if their needs had been met they may have achieved highly and fed back into the economy.
- These small schools should offer natural movement breaks and allow therapists on site to help with OT and SALT
- They should be led by and have staff who are either neurodiverse or have neurodiverse family members, so they truly ‘get it’ and don’t just say they get it when they show through their actions time and time again that they don’t at all.
- The schools should understand not everyone loves team sports and offer alternative forms of exercise.
- They should offer lunchtime activities like yoga, gardening club, lego club, dance etc so students can recharge at lunch and experience some social interaction rather than being left drained by playtime because of the sensory and social overload of the playground
- They should offer scaled back versions at times of year like the run up to Christmas, understanding that neurodiverse children like routine, and maybe have a Christmas lunch and carol service as the only end of term Christmas activities rather than the weeks of Christmas activities mainstream schools seem to have that are exhausting and too much even for many neurotypical children.
- Things like sports day should allow for participation in other ways like helping rather than the pressure of everyone watching you followed by the sensory nightmare of sitting on itchy grass while parents look at you, sat too close to other children chatting and cheering and touching you. Inclusion does not mean everybody doing the same.
- These small schools could be created by a mix of smaller, under capacity current state schools and smaller independent schools
- Promote and allow flexi schooling in both primary and secondary as an alternative option for neurodiverse children who struggle in full time mainstream. The pandemic has taught online learning is possible, many adults work from home part time. It makes perfect sense to reduce the sensory overload by allowing some time in school to be mixed with some days of self study at home, which could be self directed or online group lesson. Look at Huxley Primary School in Cheshire as an example.
- Do not allow councils to act illegally by trying every trick in the book to delay paying for what children need and are legally entitled to. Do not allow them to dodge their responsibilities and push everything they can to tribunal.
- Allow paper hearings without councils getting a say in whether this happens.
- Create a culture where teachers believe and act on what parents tell them rather than trying to send them on parenting courses which just add extra stress when it is clearly not the problem.
- Speak to neurodiverse experts in the field: Small Talk Speech and Language, Dr Joanne Riordan Educational Psychologist, Viv Dawes, Dr Naiomi Fisher, Eliza Fricker, Making Momentum for Alternative Provision.
Current and future model of SEND provision
- I asked several times for school to refer my daughter for SALT and OT and was repeatedly gaslit and deferred. I paid privately for both which resulted in diagnoses of sensory processing disorder and selective mutism, and a conclusion that her sensory needs were not being met at school.
January 2025