3. Awareness and Training
As stated in the introduction, most participants touched on the issues of training and awareness of autism. Some did so within a particular context, such as health or education, while others raised the issues in a more general sense – for example, 'autism awareness training delivered to all public sector workers who provide services would be start'. This section is concerned primarily with contributions of the latter type and uses the broad subthemes of 'Awareness' and 'Training'.
There was a clear feeling among participants that more needs to be done to raise awareness of autism among both the general public and professionals who encounter or work with autistic people. Promoting awareness among the public, or among 'neurotypical people' is 'key', and more needs to be done to confound 'Rain man' stereotypes:
Autism affects everyone differently and in varying degrees, many people think that because they've seen one autistic person, they're all like that. This is very much not the case. There are so many aspects of autism that the vast majority of the public don't understand. These aspects need to be promulgated widely.
Several participants raised this issue – that autism is a spectrum and therefore presents differently in each person. As one said, 'be aware that we are all very different…There is going to be some underlying similarity, but very little emphasis has been put on finding out what that is. No two cases are the same'. Another said that awareness must be raised of 'all' aspects of autism, as well as any co-occurring conditions the individual may have. Others noted that autism is a 'hidden' or 'silent' disability and therefore easily missed. As one participant said, '[because] my son "looks fine", people place expectations on him that are unrealistic, he is then criticised for not "performing" as he should, then his mental health declines'.
Participants were clear that lack of awareness and poor understanding of autism continue to drive misconceptions and stereotypes. One participant said the key is, 'education, education, education – not paying lip service to autistic stereotype messaging', while another said there are still 'anxieties and misconceptions of autism within society'. One participant recalled their own experiences, and the importance of understanding that adults can also be autistic:
Awareness. Most of the focus is on autistic children and their families. This creates the notion that autistic adults should also behave like autistic children (public meltdowns, idiosyncratic self soothing etc.). If adults don't behave like that and can appear largely 'normal' they are treated, at best, like everyone else (not as someone with special needs) or, at worst, with hostility and suspicion that you're somehow trying to con people. I, like everyone else, don't enjoy making a fool of myself so I go to great lengths to avoid this. When I make a mistake it's as if I had wilfully done it ( e.g. hurt someone's feelings etc.). People don't know how their own minds work and most suffer from the illusion of control. If you don't know that your mind automatically prioritises things for you, you would struggle to understand how an autistic person, who seems otherwise intelligent, can be let down by poor executive function.
Another participant recalled similar personal experience:
I'm fortunate I 'pass' - so generally have had no difficulties 'integrating', but from my perspective certainly just general awareness would make all the difference. At the moment, I avoid telling people I'm autistic and just allow them to call me 'quirky' or 'weird'. It would be nice if the general public had a higher awareness of autism, particularly that it is not limited to those who require 24 hour supervision, that there are many functioning people out there who just lead their lives as normal and handle the difficulties their autism presents them. If [only] people realised that there are many people with autism who are just 'normal', and work just like they do, attend study just like they do, and get on with their lives, just like they do.
Raising awareness means doing so for the full range and complexity of the autism spectrum. Too much 'emphasis on severe or ostensible autism over Asperger's etc. means complete lack of awareness and lack of facilities and provision [for higher functioning individuals]'. One participant said professionals in particular still 'consider that having higher function autism or Asperger's Syndrome means that autism has a "mild" effect on the individual'. Others touched on the need to raise awareness about autism in females, whose autism may present differently from a 'more traditional male presentation' and who may often be able to 'mask' it. Autistic people may mask their difficulties to 'fit in' or to avoid being viewed by others as being 'stupid', or because they were 'simply…able to camouflage their difficulties at that moment in time'.
One participant raised the issue of older autistic individuals. Older individuals generally feel their 'contribution is not valued, their capacity and assets ignored, and their ability to influence change is dismissed'. For an autistic older person the challenges are greater still, so that 'awareness of these barriers and a coherent and consistent ability and action to challenge and counter them is paramount'. Communities are not 'fully deserving of the description unless they actively foster the inclusion of all citizens'. Similarly, more needs to be done to raise awareness of those diagnosed later in life, in particular those who do not have 'sufficient family support or when parents are requiring care themselves due to later life and can't continue the same daily responsibility for autistic person'. Other, more general comments about raising awareness included:
- 'Keep spreading Autism awareness'.
- 'Promote autism awareness and acceptance'.
- 'More awareness about the Autism spectrum and how it affects those who are on it'.
- 'Strive for a world where autism and indeed all difference is accepted more widely'.
- 'Raised awareness and/or tolerance is crucial to progress (I think)'.
Participants were clear that raising awareness is linked to increased social acceptance of autistic people and greater utilisation of their talents and skills. One participant said acceptance is 'huge' for autistic people. Raised awareness would contribute to the development of 'a culture of empathy and understanding' that will 'help to integrate and support people with autism to engage as more active citizens'. It is important that the public's perception of autism shifts from seeing it as a 'defect' to seeing it as a 'difference', otherwise intolerance and exclusion will continue. If increased awareness leads to greater societal acceptance, it may open up 'more opportunities as hopefully we could be better understood…there seems to be emphasis on autism awareness, but being aware and tolerating us is not the same as accepting and understanding us, or at least trying'. A more autism-aware and friendly society is likely to be 'more inclusive', which, in turn, may mean communities create more autism-friendly activities. One participant noted that 'some supermarkets, cinemas [and] sports centres' have an autism-friendly hour, but spaces are limited. Another cited activities in 'pools, gyms and social sports', but staff training is 'vital for effortless inclusion of the children/teens/adults'. More autism-friendly 'social experiences' should be available and led by people who are 'empathetic'.
Raised awareness and therefore acceptance would mean that people see autism in a 'more positive light'. As one participant said, citing a recent documentary about a high profile autistic television presenter, there are 'lots of very clever, happy people out there who have ASD. Show people how you can make it work for you'. People should be encouraged to see an autistic person's 'skills as well as their difficulties' and to appreciate the 'huge benefit people with ASD bring to society'. As another participant said, autistic people are 'often even better at doing [things] than the rest of the public, simply because of their autism. It could just take employers or colleagues to take into account an autistic person's difficulties to get some absolutely great reward back'. There needs to be, according to another participant, a nationally-promoted 'strengths-based view/narrative for autism rather than the current deficit view'. While some autistic people may require high levels of support, they also:
Have a lot of strengths and valuable qualities that should be celebrated and harnessed. We need to not only ensure they have the skills to utilise their strengths but ensure society recognises these and supports them. We have seen an upsurge in awareness raising through the media and it is important that we continue with this awareness raising in an education setting. This will allow us to dispel myths and open conversations about the strengths as well as the difficulties that arise from autism, at whatever point on the spectrum it presents, creating a new cycle of understanding and support in society.
Participants offered a number of suggestions about how awareness could be raised. For some, the task begins at and must be 'reinforced throughout' school, where children should be taught 'tolerance…from teachers to see the person, not the behaviour'. Children should learn 'about autism and how it is perceived, and this can eventually change attitudes and educate'. As one participant said, no child should go through the education system 'without acquiring knowledge about autism and how sensory processing can influence how people with autism show up' - acceptance 'should start from a very young age'.
Others said there should be a TV campaign with 'film clips of what it is like to be autistic', or autistic-friendly adverts. A national campaign featuring 'video interviews with real people on the spectrum will help to raise public awareness of what it is like for an autistic person to live in our society and dispel many of the myths which persist around this condition'. Any such media campaign should be 'hard hitting' and seek to 'break the…stereotype of how autistic people may look and behave', as well as highlight the particular issues around autistic women and girls. The public, in any case, should be 'encouraged' to watch TV programmes about autistic people. One participant said there should be a multi-pronged approach which utilises TV, social media and workplace training, and that the issue is 'perhaps [about] tolerance for all…and that people have different brains in the same way that they have different hair/skin etc. – i.e. bust the myth of "neurotypical"'. Autistic writers, filmmakers and artists should be supported so that 'popular perceptions of autism are influenced directly by autistic people and not filtered through a non-autistic perspective'. Another participant suggested having autistic-friendly signs 'on shops and public buildings to show [a] person they will be welcomed there if they need a safe place to be for any reason whilst out and about'. Acceptance and awareness, for another participant, may be better promoted if there was an autistic 'pride day' rather than an awareness day. One participant raised the issue of funding and said the government needed to invest more money in raising awareness of autism because it is 'crucial'. Another said government should have an 'autism advocate…dedicated to raising awareness and helping people with autism'.
Participants agreed that more needs to be done to raise awareness of autism among professionals and those who staff services. As one explained, 'we need professionals trained so that they will listen to the families. Professionals [who] understand that without the supports being in place then the person with autism will not be able to overcome the barriers in place'. Another said raising awareness is important because 'people with ASD are not all the same, one size does not fit all'. Bad or poor experiences of professionals may mean autistic individuals are reluctant to engage with services later, so that more training and understanding within public services will 'help people engage…which will help them access better support to enjoy healthier lives'. Other general comments included:
- 'Autism awareness training delivered to all public sector workers who provide services would be a start'.
- 'More knowledge, more training, more tolerance, more understanding across all sectors and services' .
- 'Ensure professionals have compassion and understanding about our condition'.
- Raise awareness of the variation within this condition with…professionals'.
- 'A better understanding of autism in all public services … there is still a huge misconception'.
- 'More awareness of the needs of people with autism within statutory services'.
Most participants agreed that raising awareness among professionals and services would only happen with more and better training. Some spoke in general terms about 'professionals' or 'services':
- 'Employ more staff and train them properly'.
- 'The complexity of [autism] requires tailor-made provision of services with staff appropriately trained to support service users confidently'.
- 'Make sure they have the right support staff [and] who are trained in autism'.
- 'Better training for public services…Clear training for every member of public service'.
- 'Ensure that staff have proper training in order to support this in the best possible way'.
- 'More autism-based training for professionals who may be working with an individual or family affected by autism'.
- 'Training for support workers who don't understand the condition or individual'.
Others cited particular roles:
- 'Childcare professionals to facilitate earlier diagnosis and reduced waiting times'.
- 'Public services like hospitals, schools, doctors' surgeries, public transport etc.'
- 'All frontline staff, NHS, social work, teachers etc.'
- ' GPs should be made to do a course, [and] health visitors, as toddlers can display tendencies pre-nursery/school'.
- 'Increased autism training for student nurses, GPs, teachers, social workers and community education students would act as a catalyst for change'.
While participants agreed training should be more widely available, it must move beyond tokenism or 'a module in autism after one shadow shift…working with the autistic adult'; staff need to be well-trained, not 'just aware of autism'. Professionals need training in how to 'engage and interact with people with ASD' rather than simply rely on input from families. There should be, according to one participant, a 'minimum qualification – a first degree in something more appropriate and then specialist in-work training…for a nurse or other medic'. Autism training should be 'intrinsic to various relevant professionals e.g. medical, teaching, police etc., or 'part of the primary education degree, make it law'. More autism awareness courses could be made available so that people can 'learn about autism and be able to understand it more', as could a website 'with clear information on the likely needs of autistic people, their rights, and how best to support them'. Such a website should be targeted at public workers and could help 'reduce conflicts and stress for all involved'.
Several participants said training should be mandatory for staff working with autistic people. This could include a 'certified programme that you need to do to work with this group'. It is important that training or learning needs are compulsory to avoid staff 'self educating'. Participants said mandatory training should be introduced for 'all local authority staff', including trainee social workers, all GPs, and form part of NHS staff inductions and continuing professional development. Autistic people and their families also need to be involved in planning and delivering 'better' autism training. Local authority staff should have access to autism training delivered by autistic individuals. Any training should, in any case, be more than 'just a basic two hours' and instead form a 'large' part of professional training as a caveat to qualifying. One participant said a Code of Conduct for professionals should be introduced because people are 'sick of being treated like second class citizens by arrogant, ill-informed professionals…Respect goes a long way'.
A number of participants noted the importance of ensuring training is available for parents of autistic children and the wider family unit. General comments included 'parent training' and 'support for parents – more training courses'. One participant said there should be free training sessions for parents – 'we are parents, not specialists in mental health'. Another said funding should be made available to allow parents to 'receive adequate training in how to deal with…behaviour challenges'. Parents and carers should be taught how to 'help with everything from employment rights, through to financial help to getting a proper diagnosis in the beginning for your child'. It is important, said another participant, that parents of autistic children have the 'opportunity to meet and learn from a range of adult autistics in order to better understand the needs of their child from an autistic perspective, and better-empathise with an autistic way of thinking'.