Approximately half of all participants raised the issue of education. Again, as with other themes, education was raised under all four strategic outcomes and is clearly seen as an enabler of each: a healthier life, choice and control, independence and active citizenship. The majority of participants focused on schooling, both primary and high school. As with other themes, subthemes emerged including training and awareness, proper in-school support, and schooling options.
Training and awareness
A significant number of participants who discussed education raised the issue of training and awareness in schools, not simply in terms of teachers, but the whole school, including pupils and other staff. Some participants were clear to make the distinction between proper training in autism and training or activity that simply seeks to raise awareness. As one put it, 'our children…deserve [the] people working with them to have more than an awareness of ASD…they have a right to be taught by fully trained professional teachers, not by someone who is "aware" and has had "some training"'. Others noted the importance of having teachers and school staff who are 'specially', 'better' or 'properly' trained. One participant noted that without proper or 'comprehensive' training, some teachers may develop 'sceptical views on autism' and deploy tokenistic support and interventions such as a 'visual timetable, and that's it'. Another participant said that while teachers need more training, newer teachers and probationers 'are generally far more confident at delivering well differentiated lessons that take into account all the children's learning needs'.
Several participants, while not touching on the qualitative nature of any training, stated simply that more is needed for teachers and school staff:
- 'More training of school staff…so again there is a more empathetic attitude to autistic people in school and the workplaces'.
- 'Educators need more training in this field'.
- 'EVERY SCHOOL, PRIMARY AND SECONDARY, must have trained and dedicated support staff'.
- 'More training and understanding; schools and college staff need training'.
- 'More training for autism specific training for education staff'.
- 'Training for staff at schools and more awareness as part of the curriculum'.
For a large number of participants, school is the place in which empathetic attitudes about autism should first be cultivated. As one said, 'a lot starts at school re: integration'. Awareness of autism should begin in primary school and continue throughout school years. Another participant said schoolchildren need to be taught 'tolerance and inclusion', while another said it is important to talk to children 'about the condition…not whispering in the playground as if it is something to be ashamed of'. One participant suggested producing a DVD for schools featuring autistic people talking about their experiences. Another said autism should be taught as a 'subject' at school along with other hidden disabilities and mental health conditions, since 'acceptance should start from a very young age'. Other, similar comments included:
- 'Education of others from an early age - nursery, school, college, work etc.'
- Awareness and understanding in all walks of life. This should be taught in schools and repeated at different stages'.
- It starts with education....in…schools… etc.'
- 'There are still anxieties and misconceptions of autism within society, children in schools would benefit from developing their understanding of the condition from an early age'.
Some participants offered suggestions about training staff and improving knowledge and awareness of autism. One suggested having an 'autism specialist in every school who can teach the teacher and whom the teachers can consult. Who can teach the pupils social communication skills and also provide a point of contact for parents of autistic children'. Another suggested that the 'Autism Toolbox' should be mandatory for teachers, while another said teacher in-service days should 'cover' autism. For another participant, NHS Education for Scotland's autism training framework should be applied fully so that every local authority has a training plan, including 'mandatory whole-school training'. It is important that professionals, including teachers, have 'obvious contact points for autism information when they are involved with autistic people'. Good 'training packages' should be rolled out across all schools but with 'as little cost implications as possible. Make it everyone's business'. Participants were clear that properly trained teaching and school staff would allow autistic pupils to flourish and feel included within their school community. Getting it 'right' for autistic pupils in schools would see them 'reach their potential and feel they are members of the wider community'.
A large number of participants felt the best approach to training was to make it mandatory. For some, this would happen within the context of wider compulsory training for staff in the public sector, while for others the best means by which to ensure appropriate training for teachers was through initial teacher training. One participant noted that, in statistical terms, every teacher in Scotland's mainstream schools will have an autistic child in their class, so that this 'prevalence' means 'autism should be included as a specific topic in Initial Teacher Education in Scotland'. The same participant pointed out the that in the year to March 2016, 65 per cent of referrals to the Additional Support Needs Tribunals involved autistic children and young people, with parents often choosing this route of dispute resolution because a 'child's needs are not understood by education professionals and, therefore, not being met appropriately'. Another participant, who is also a teacher and parent of an autistic child, highlighted the inconsistencies in education that arise from little or no staff training:
Some teachers have been excellent, others truly awful and have made it difficult for my son to go to school. I am a teacher and received next to no training on AUTISM. There is no need for teachers to do any specific training. You really don't understand autism unless you do extensive training or have a family member who is autistic. I know of people who work in bases in schools who have no official AUTISM training.
A number of other participants raised the issue of compulsory autism training in more general terms:
- 'Make autism awareness training as a mandatory part of teacher…training'.
- 'Teachers should receive training on autism as part of their initial studies'.
- Teachers – their training should have a compulsory module about autism'.
- 'Every teacher as part of their initial studies, should receive in-depth training about the spectrum and how to educate in a way that an autistic child can understand'.
- 'Teacher training in autism is woefully inadequate and at least some basic training should be included in all teacher training courses'.
A few participants said that any training for educational staff should include the particular issues that autistic girls may face. One participant said their daughter 'suffered psychological distress due to her old school's inappropriate actions as they did not have the skill set to support her or the family or understand what caused her behaviour'. Another said the Scottish Government needs to raise awareness of 'masking in girls, including amongst…teachers'. The ability to 'mask' and 'masquerade' in order to 'disguise their difficulties' may mean that autistic girls' educational performance is below their abilities, and that they may often miss school.
Two participants raised the issue of Applied Behaviour Analysis. Both suggested looking to other countries for 'successful models', including the USA and New Zealand. One suggested following Ireland's lead on 'early intervention ABA schools red door initiative', to 'drag Scottish education of ASD children up to date with the latest research data'. England's 'excellent ABA schools' were also cited as examples to follow. Scotland could be 'visionary and revolutionary in this approached' and 'invest early [to] save money later'.
A number of participants recalled how a lack of understanding and training in autism within schools affected their children and family. A few participants linked this lack of awareness school exclusions. One, for example, said schools should not 'use exclusion to shirk their responsibilities…I have been so brutally treated I struggle to leave the house now'. Another participant said they had to 'continually' explain to education staff how autism affects the person for whom they care, while another said increased awareness would mean teachers would be less likely to dismiss an autistic child as 'rude' because they act in a certain way. Another participant recalled being 'put down' on several occasions by teachers who did not understand autism. One participant that they have been 'struck' by how many children come through the education system 'feeling broke, dejected with poor self-esteem and little motivation', while another stated their concern that lack of understanding is affecting autistic pupils' attainment. One participant, a parent of autistic twins, said training should be in place for all professionals, including teachers, working at the 'forefront' with children and young people on the spectrum:
My twin sons are both on the spectrum but obviously completely different. However, stressors appear to be the same for them but there is no-one to speak to in a professional capacity, especially at school...My older twin son just goes into meltdown when he is very stressed. We have tried to make sure he has strategies in place to help him cope but having teachers telling him he doesn't have to do something because they don't have the proper training to cope with meltdowns teaches him that he can just go into meltdown when he doesn't want to do something, because children with autism are clever that way.
Funding and resources
For many participants, awareness and training are linked to the resources and funding schools have available to them. Again, some spoke in general terms about increasing funding and resources:
- 'Provide more support and funding for these children to have good school lives'.
- 'Fund more trained support staff in mainstream schools to allow inclusion to work'.
- 'Ensure there is adequate funding to allow support staff to fully support children and young people in the education system'.
- 'By providing more funding and support to education. This is the key area where differences can be made and at the moment education areas are understaffed, overworked and underpaid'.
- 'Improve funding for children with autism in schools'.
A number of participants said more money needs to be made available so that schools can hire additional support teachers who can provide autistic children with a 'solid platform' in their education. Some said funding should available to allow autism-specific provisions within a school or one-to-one support in mainstream. Schools could also hire 'outreach teachers' to teach at home those autistic children who have fallen out of a 'monster school' that did not take account of their needs.
Another participant said every school in Scotland should be given funds to 'maintain a sensory room for a chill out space', while another said more money needs to be made available for IT equipment and software for those autistic children who struggle with writing: 'my son struggles terribly with this and it would give him independence when story writing. Schools aren't properly funded or advised about this'. Lack of funding or funding reductions can, of course, impact on what support is available to autistic children. One parent recalled how her daughter did not receive the correct support because of funding issues:
Our eldest had a 1:1 helper in primary one. We eventually discovered that he wasn't receiving this because another child in the class needed 1:1 supervising. There were no classroom assistants…and the other child didn't have his own dedicated 1:1 person, so our son's was taken. Due to the high number of children requiring additional support, our son's help stopped in P2 as there just wasn't enough staff to do the job.
As well as raising issues about funding and resources, a number of participants said that more needs to be done in the round to ensure appropriate support is in place in schools for autistic children. General comments here included:
- 'I think there needs to be more to support in schools for people with autism'.
- 'Effective support for education so that potential is maximised'.
- 'Increase the support that kids require at school'.
- 'Appropriate support through education'.
- 'Schools that properly support the needs of children with autism'.
- 'By offering more education and services geared towards support'.
Some participants offered particular suggestions about the type of support that needs to be in place for autistic children and young people. Many thought that having special units available in mainstream schools would go a long way to improving outcomes for autistic pupils. One said:
Every mainstream school should contain an autism unit as well as many support workers to assist and support these children if you want them to attend mainstream, the education system is old fashioned and was not put in place to support the needs of kids on the spectrum meaning their education suffers as well as their self worth and esteem.
Another participant said any such units should 'preferably' sit within primary schools or nursery, where 'the children will have the chance to engage and develop their social skills at their own pace within a safe secure environment instead of being put into noisy classrooms with around 30 other children'. In any case, what is needed is consistency of provision so that support is available 'universally across all schools instead of one high school doing one thing and another high school in the same council area doing different things such as Enhanced Provision unit'.
Autistic pupils should be allowed to 'form a close rapport with a few members of support staff', to give them the confidence to speak up and give voice to the choices they want to make. A similar approach may have benefits for non-verbal autistic pupils, because it leads to staff having a fuller understanding of the individual child and provides them with an opportunity to work with the family as an 'an advocate within the education establishment, helping [the autistic pupil] learn coping strategies and living skills during their school years that will increase self esteem and the self confidence'. Others noted the value of one-to-one support, although acknowledged such support may not suit every autistic pupil. One parent said that after 'fighting' to ensure their son had one-to-one support in place, he has achieved various qualifications and is likely to go on to higher education. Some participants pointed out that higher functioning children may also need support. As one put it, local authorities are 'foolish' to think that high functioning autistic children do not need support, which they thought was a cynical money-saving exercise.
While diagnosis has been discussed elsewhere in this report, a number of participants raised the relationship between early diagnosis and education. One participant said they had to 'fight' for four years for their child to be diagnosed and to find a 'school that treated our child like any other' – the child is now home schooled. Another said the long wait for a diagnosis for their son meant he was isolated a school, which in turn affected his mental and physical wellbeing. Other participants said schools, on the whole, could be more supportive of the pupil and the family during the diagnostic process.
Several participants raised the importance of ensuring parents and autistic pupils and their advocates are listened to within the educational establishment and involved in decisions that affect them. As one participant said, 'believe the parents – they are experts for their children'. Another said the onus is on schools to 'get parents in for regular meetings so that they have more input into their child's education and the needs they have to be at an achieving level'. Others said:
- 'Listen to the kids and their families. At the moment this isn't happening. Education authorities, the named person, social workers and other professionals have full control of how they want it'.
- 'Parents know their children best so listen to them, do NOT ignore their views'.
- 'LISTEN to the individuals. BELIEVE them when they say they know what they do and don't need'.
- 'Listening to them - actively hearing what they and their families are telling you. By eliminating the culture of parent blaming'.
Within the context of parental involvement, some participants discussed the appropriateness of mainstream schooling for autistic children and young people – an issue that a large number of participants raised more generally. Some questioned whether mainstream schooling was appropriate for autistic children at all. One parent with four autistic children said local authorities should stop presuming that 'all children with autism need to be in a mainstream school. Listen to the parent/carer when we tell you our kids aren't coping'. Mainstream education 'has so little variation in it, and is terrible for autistic children'. Another participant said sending severely autistic children to mainstream school means they are viewed differently by other children, who 'struggle to accept [those] with very challenging behaviour', so that autistic children are 'labelled' early on by their peers as 'bad' or 'naughty'. Educating autistic children in mainstream schools also 'puts a huge burden on staff'. Yet, even where there are 'superb' additional support schools in the local area, some parents 'don't want the stigma of their child attending a special school'. Another participant said mainstream education does not work for 'a lot of autistic children', while another said education is a 'huge failing' for people on the spectrum:
The assumption that people with autism but no intellectual impairment can manage in mainstream schooling reflects a lack of understanding of the range of difficulties that people on the spectrum face. Sensory, social and anxiety issues, along with increased processing time and the need for increased support are not catered for in mainstream. Education is key to people's life chances, and that is true of those on the spectrum as well as those off it. The difficulties that autistic people face can be barriers to learning which make them liable to spending the rest of their lives on benefits or in low wage, dead end jobs…Only the government has the power to reform education for autistic people.
Several participants said educational options or alternatives to mainstreaming should be available for autistic children. Where alternatives are available, they should be more transparent and easier to access. Another said there needs to be 'serious alternative options', so that 'autistic children are not forced into schooling…that [doesn't] fit their needs and talents'. One participant touched on the challenges of living in a rural area, where there often maybe be fewer options and 'not enough autism ASN placements outwith mainstream schools'. Travelling long distances every day to a mainstream can be a particular challenge of living in such areas, again because a lack of options. Other comments included:
- 'Options. Mainstream isn't always the most suitable or best option'.
- 'Education Options'.
- 'More options need to be provided when mainstream schooling doesn't work'.
- 'Choice in education provision is disastrously limited'.
- 'Ensure that there are actually choices!'
Other participants struck a more positive, if cautious note about mainstreaming. One said the principle of inclusion which underpins mainstream schooling is 'worthy' but too often can lead to a degree of uniformity that does not square with the reality of autism. If inclusion and acceptance are at the heart of mainstream values then more needs to be done within mainstream schools to 'allow inclusion to work'. Exposing neurotypical children to autistic children from 'nursery onwards because of integrated education' will ensure, over time, that there will be 'less anxiety in the population at large about people with ASD'. What is key to remember is that 'one size does not fit all' and that flexibility is essential within schools if mainstreaming is to work for autistic children and young people.
Linked to concerns about the very idea of mainstream education are the particular challenges to which it gives rise for autistic children and young people. Several participants touched on these challenges, which break across three broad categories: training and awareness (as discussed above), environmental, and funding. There is, of course, significant overlap between these issues and those that have already been discussed.
For several participants the problems with mainstreaming come back to lack of training and awareness within the school, or 'no understanding of autism or how to cope with sensory needs'. As one participant described it:
The teaching methods are totally wrong. Children are failing school due to not being taught in a style they understand. Teachers are too quick to reprimand a child for non-compliance when that child is totally overwhelmed and bewildered as he doesn't understand what is being asked in the first place. The teacher wants the whole class to work at the same pace as them so they are too quick to move to the next subject and our autistic children are being left behind with no support.
For others, the problems with mainstreaming for autistic children are environmental. One participant, for instance, said that new schools are 'bigger, open plan and with lots of bright light. All of this is in direct contradiction to the environment which suits the majority of autistic people, and makes schooling very difficult'. The same participant linked problems with the environment to those with training and awareness: 'most teachers have at best a basic knowledge of autism and do not have the skills to create a calm safe space for autistic children'. Inclusive education 'equals autism friendly schools – so that both the social and physical environments are adapted'. Another parent, acknowledging that the 'sentiment' behind mainstreaming is 'good' described how a mainstream school environment affects her son:
Yes, I want my son to be able to be part of society, but at present there are many social and group situations he finds extremely stressful…This includes time spent in the classroom. I think we need to think carefully before forcing children into settings in which they are at best uncomfortable and at worse in a state of anxiety, even panic. Of course I hope that he won't always struggle this way, but until he is able then I'd rather be able to choose a quieter and less stressful life for him; reform the education system. There needs to be more provision for children with autism. This should come in the form of smaller classes, allowing quieter environments for learning. Mainstream school environments just don't work permanently for every child. The opportunity to enter a different environment when mainstream becomes overwhelming is essential to enable learning.
Participants offered suggestions about how the school environment might be made more autism friendly, from having 'quiet places for break times [and] small rooms for eating' through to 'reduced class sizes…to allow for calmer environments with less children and their accompanying tables and chairs. A full class of children also equals a full class of furniture - more tables/chairs/tray units etc.'. One participant said some schools already have 'small units for those with additional needs to socialise with others rather than being asked to go out to playgrounds which can be overwhelming for those with such conditions'. Another said every school should have 'dedicated…facilities, rooms, [and] a hub area for children and young people'; rooms might also be sound proofed, while schools could remove fluorescent tube lighting or use lower lighting. Another participant said greater use should be made of community facilities such as local libraries, because they offer the chance to learn in a 'quieter, calmer space'. Funding could also be made available to support online learning for autistic pupils for whom the school environment is overwhelming.
As discussed above, several participants raised concerns about finances and resources within the context of mainstream education. One said it is important to 'invest in schools – [the] presumption of mainstream is not working as the funding is not enough to ensure needs are consistently met'. Another expressed a similar sentiment, and although in agreement in principle with the presumption of mainstream, said a 'reduction in support' means staff are 'stressed trying to make square pegs fit round holes'. Other comments included:
- 'Fund more trained support staff in mainstream schools to allow inclusion to work'.
- 'Provide the extra manpower so autistic children get the extra support in mainstream school'.
- 'Increased funding for education provision to allow children and young people to access an appropriate level of support to allow them to be included within mainstream provision'.
- 'Inject cash into increasing staff support resources to support our vulnerable children effectively in mainstream education'.
While, as discussed earlier, a large number of participants spoke of the need to ensure adjustments are made for autistic children in, for example, classroom lessons, others raised the issue of teaching independent living skills in schools. One said that 'independent living' should be a key outcome for autistic children as they progress through school, while another said education provision should include a 'specific life skills element'. Other practical suggestions included having 'specialist autism-trained teachers to train children in how to manage a home, cooking, finance, shopping and leisure'. This could happen either while the young person is still at school or during an additional school year. Specific classes intended to teach independent living skills might also be introduced. Further general comments included:
- 'Offer life skills throughout school'.
- 'Teach them life skills'.
- 'Education provision needs to include a specific life skills element'.
- 'Accessible education that looks at a whole range of learning including life skills'.