The National Autistic Society estimates that 1 in 100 people are autistic, they described autism as “ a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.” (1)
I undertook a self selecting survey in early 2019, that was shared on social media and received 421 respondents, 76% had an official diagnosis of ASD. The survey was called “Autism and accessing education” and classified a young person as anyone under 25 who identifies as ASD.
Pie Chart Are you diagnosed ASD?
61% NHS diagnosis 15.5% Private diagnosis
16.2% undergoing/awaiting assessment
2.9% Refused/did not make criteria for NHS assessment
4% Suspected ASD
0.5% Worried/scared to ask for an assessment
Of the 91% that were receiving an education, the majority were attending a mainstream school and very few were receiving specialist provision.
Piechart “ Where are you currently receiving an education?”
57.7% Mainstream education
7.7% Non mainstream school
6% Home tutoring/online education paid for by the school/LA
14.8% Home educated
8.9% No education
Only 30% of the respondents have (or had) an EHCP in place to assist their education, an EHCP is an Educational Health Care Plan. The government describes it as
“An education, health and care (EHC) plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.
EHC plans identify educational, health and social needs and set out the additional support to meet those needs.” (2)
A worrying 11% had been refused an EHCP, of those refused the vast majority are still in mainstream, but the amount with no education increases to 11%
Pie chart “Young people with ASD refused EHCP”
No education 11.1%
College /University 8.9%
Non Mainstream 2.2%
Tutors/Online from LA 4.4%
Home education 6.7%
The majority of those refused an EHCP have an official NHS diagnosis of ASD and only 2.2% (1 respondent) had been refused an assessment for ASD.
Pie chart “Diagnosis of young people who were refused EHCP”
Refused/did not make criteria for assessment 2.2%
Private diagnosis 11.1%
Undergoing/awaiting assessment 17.8%
NHS diagnosis 68.9%
School refusal is a massive problem for young people, Young Mind describe it as
“When children completely refuse to go to school, extreme fear and anxiety often a big reason why. This is why school refusal is also known as ‘school phobia’. Your child might be feeling overwhelmed with anxiety about schoolwork, relationships with friends or teachers. They might have low self-esteem, or be experiencing bullying and feel too afraid to talk about it.
Your child might be worried about things going at home, like a big life change, family breakdown mental illness or bereavement. This sort of life event can increase their worry that bad things will happen at home, while they are at school.
School refusal is usually accompanied by tantrums, physical complaints such as stomach aches, headaches, vomiting, rapid heartbeat, dizziness, pleading or begging to stay at home and even threatening to harm themselves if you make them go to school.” (3)
Not Fine in School describe it as a struggle with school attendance that “may be due to unmet Special Educational Needs & Disabilities (diagnosed or suspected), bullying, trauma, physical illness or excessive anxiety. School attendance difficulties are often poorly understood, are compounded by current challenges within the education system, and can have severe consequences for both child and family.“ (4)
64% of respondents were a “school refuser” at some point, the 30% refused an EHCP may contribute to this figure, given that NFIS identify that unmet SEND can cause or compound school refusal issues.
Pie Chart “Are you/have you been a “school refuser”?
Out of those 63.6% who said they were a school refuser, only 31.6% had an EHCP in place at some point and 12% had been refused an EHCP. However 31.6% had an EHCp in place and were school refusing, so even if autistic young people manage to get an EHCP, it doesn’t seem to fully meet their needs.
15.8% of the school refusers managed to not develop attendance issues, 46.4% did develop attendance issues but were not threatened with further action by the school. However 28.3% were threatened with prosecution and 9.4% were threatened with Children's services involvement for school refusal. This management of a condition that is driven by mental health concerns is not helpful and needs urgently addressing.
Piechart “Schools handling of school refusal in autistic young people”
No attendance issues 15.8%
Threatened with Children's Services for attendance issues 9.4%
Had time off but not threatened with prosecution or Children's Services 46.4%
Yes, threatened with prosecution due to school refusal 28.3%
Going forward, many school refusers become home educated, mostly due to the lack of support in the school system and threats of prosecution and Children's Services involvement. This bullying is just another form of off rolling, where students that are not good for statistics are forced out of schools to improve the overall school statistics.
Pie Chart “Education of school refusers”
Mainstream school 49.4%
Non Mainstream 10.1%
College /university 4.1%
Home Educated 17.2%
Online tutoring/home tuition paid for by the LA 8.6%
No Education 10.5%
One simple way in which school could support young autistic people is through making reasonable adjustments in school. Failure to do so counts as disability discrimination under the Equality Act 2010 Guidance for Schools. (5)
56.7% of respondents say that they have not been able to access reasonable adjustments (such as stress toys) a direct violation of their rights.
Pie Chart “ Have you been supported to access reasonable adjustments such as stress toys at school?”
This failure will directly contribute to stress levels in a young autistic person and that can have awful consequences. As Well as school refusal being heavily linked to school stress, 48.7% of respondents reported self harming due to school stress.
Pie chart “Have you ever self harmed due to school stress?”
Another area that can contribute to stress is other peoples reaction to an ASD diagnosis or potential diagnosis. Many people still view autism as an illness and a negative thing, this includes many educational professionals as revealed by the respondents.
Pie Chart “Has an educational worker ever made you feel ASD was a bad thing?”
Pie Chart “Has an educational worker ever made you feel that you/your child will achieve less due to ASD?”
As always with any “invisible” disability, disbelief from the general public and professionals compounds all issues. 50.5% of respondents said that an educational worker had either questioned or dismissed their diagnosis. A very concerning 5.6%, or 23 respondents said that an educational worker had claimed that ASD doesn’t exist.
Pie Chart “Has an educational worker ever questioned your ASD diagnosis?”
Yes, dismissed/questioned my diagnosis 50.5%
Yes, they said they don't believe in ASD 5.6%
We have a broken school system where student anxiety is compounded by disability discrimination, staff attitudes, and lack of provision and students are actively off rolled in order to try and improve schools overall statistics.
Much work is needed until the education system becomes a place fit for our young autistic people, never mind a place that nurtures and empowers them.