12. Engagement Events – Morning Sessions
The morning sessions of the engagement events were targeted in particular at autistic people, their families and carers. The following distils the main discussion points and is presented thematically.
Awareness and training
Awareness and training were major concerns for delegates, who explored how can we effect a culture shift in terms of autism. Delegates said autism-friendly activity needs to be expanded whether in shops or cinemas. Such activity needs to take place also in local authority-operated facilities to ensure autistic people and their families have access to them. Increasing the 'visibility' of autistic people in our communities will help reduce the stigma that often comes with autism. Delegates believed that accreditation of autism-friendly places and activities would aide this process, but recognised there can be a cost implication for accreditation. Others suggested the development and introduction of national autism alert cards. Some delegates raised the importance of recognising autism in women and girls, as well as the different support needs 'higher functioning' autistic people may have. Similarly, delegates said autism, though 'hidden', needs to be recognised as a disability in its own right, which can in turn impact on services and support available, including for example the enhanced rate of Personal Independence Payment.
Delegates believed that more positive autistic role models are needed, particularly within the context of policy development and strategic planning, to ensure the autistic voice is heard and full inclusion is promoted. The media has a role to play here, and should seek to ensure portrayals of autism are accurate and reflect the reality of life for autistic people and their families. Autistic people should be listened to, respected and appreciated as individuals.
Delegates drew a distinction between the shift needed in the public's consciousness and the changes required in the delivery of support services. Training, including the autism training framework, is important to ensuring the latter. Such training needs to be available throughout the public sector.
Diagnosis, post-diagnostic support and services
Delegates agreed that both the diagnostic pathway and
post-diagnostic support need to be improved. Early diagnosis was
viewed as being key to positive outcomes, as was early
intervention. Waiting times for diagnosis were generally felt to be
unacceptably high, while post-diagnostic support is often sparse or
not available at all. Signposting to information also has to
improve, as does the consistency of the information and advice
Delegates raised concerns that autistic people may 'slip through the cracks' because they are supported either in mental health or learning disability services. Delegates said autism should be treated as a specific classification, with professionals in services who have the necessary level of expertise.
Delegates discussed the extent to which anxiety and stress can affect an autistic person, yet services are ill-equipped to deal with the issue, which can exacerbate matters. Some delegates raised the particular issue of ensuring more support is available for women and girls on the spectrum, while others were clear that medication is not always a solution for someone on the spectrum.
Delegates raised a number of issues about service provision for autistic people and their families and carers, including the problems around accessing such services. Many discussed the importance of ensuring local authorities and integration authorities are held to account for autism services, but who are currently not fully engaged with the autism agenda. More services and support are needed for autistic adults, with much of the resource viewed as being directed toward children. Services and support need to be available consistently in all areas, which some suggested could be achieved through national standards, more and better training for professionals, and greater involvement of autistic people in service planning and delivery. Some touched on particular service models, such as the one stop shop model, which many viewed as an important service. Some delegates suggested developing a centralised hub for autism or national database of services to ensure people have access to consistent and quality information.
Delegates agreed that more needs to be done to support the wider family unity, including siblings. Many believed that parents and carers are not fully involved in the decisions that affect them and their loved ones, leaving them feeling excluded and undervalued. More focus needs to be given to the family's wellbeing, in particular parents/carers, who themselves may be experiencing stress, anxiety and sleep deprivation. Families also need training and education on autism. Delegates agreed that peer support can ameliorate some of the issues they may face as well as social isolation. Delegates also emphasised the importance of respite.
Delegates agreed that there needs to be more and better advocacy services available to autistic people. Delegates recognised the positive role advocates can play in supporting autistic people's rights, helping them access services and ensuring inclusion. Some delegates said more funding was needed for advocacy services, while others said they should have more training in autism. Others emphasised the importance of autism-specific advocacy services.
Delegates raised the issue of transitions and the importance of
early planning. Many said there is a need to improve the
transitions around schooling, but also across the lifespan. More
support is also needed around diet and wellbeing, sexuality, gender
and relationships. Post-educational transitions should also be
recognised and improved, including where a person makes moves
towards independent living.
Delegates said more clarity is needed around transitions, with some citing examples of people being 'bounced' between services. Transition planning during childhood in particular, with the child's involvement, was thought to provide an important foundation for ensuring the person's participation in subsequent transitions across their life journey.
Education was a recurring theme throughout the morning sessions. Delegates raised questions about the effectiveness of mainstream education for autistic children. Some supported the idea of mainstreaming, in that it promotes inclusion and integration – but the right support also has to be in place. Others did not believe appropriate support was available for autistic pupils because, in part, school staff do not understand autism, leading to communication breakdowns and, often, school exclusion. Parents need to be more involved in the educational decisions that affect their child, and their skills and knowledge of their child should be better put to use. Delegates pointed out that autistic children who have been failed educationally will often appear later in more expensive parts of the system such as mental health services.
In practical terms, delegates suggested that there should be autism-themed inspections of schools and that the autism training framework should be adapted for use by education staff. More also needs to be done to promote the Autism Toolbox. These suggestions could be extended to cover the further and higher education sectors. Others suggested that more should be done in schools to address the social challenges autistic pupils face, rather than focus narrowly on the curriculum. Still others spoke of disabled student funding as being key to ensuring appropriate support is in place.
Employment and employability
Delegates believed employment to be a major issue and that more needs to be done to increase employment opportunities for autistic people. Some said the public sector has a particular role to play here. More support is also needed for people moving towards employment, as well as support while they are in-work. Delegates said employers and others should look to identify and utilise autistic people's skills, as well as the particular strengths they would bring to a job. More should be done to raise awareness of autism among employers, the support they can put in place for an autistic employee and the benefits autistic people bring to the workforce. Workplaces should look to be more autism-friendly and consider appointing autism champions. Delegates discussed different models of employment support, with Project SEARCH cited as an example of best practice. Others suggested that autism-specific employment support services are required.
Finance & Social Security
Delegates discussed the complex nature of public finance, which means that people struggle to see the source of funding for autism services. Several delegates suggested that money for autism services should be ring-fenced at a local level.
Delegates also discussed personal finance and the importance of benefit maximisation to enable independent living. Many believed the benefits system to be unduly complex, time consuming and confusing. Support should be available to help people navigate the system, including help with forms and understanding the language the system uses, which is often unclear. Delegates discussed the application process for Personal Independence Payment, which many believed simply precluded autism because it did not take cognisance of the often-fluctuating needs of autistic people. More also needs to be done to raise awareness of the new Independent Living Fund.
Similar points were raised about Self-Directed Support. Delegates believed the system inflexible and the eligibility criteria overly restricting, so often excluding autistic people. Eligibility criteria is also inconsistent from one area to the next. More support, including advice and information, needs to be put in place to help people access Self-Directed Support, but also to help them manage post-award.
Housing and independent living
Delegates agreed that more mainstream housing stock should be available for those autistic people who would chose to live in it, alongside more supported accommodation for those with greater need. Housing should be 'appropriate', and there is need for more flexibility to ensure the autistic person's needs are fully met. Support is also needed for some to help them to maintain their tenancy – homelessness, or the risk of it, can be an issue for autistic people. Delegates agreed that the housing sector needs to be more aware of how surroundings and the environment may impact on an autistic person and their outcomes.
Legislation and policy
Some delegates touched on the wider legislative and policy landscape in Scotland. Some believed that legislation is the only means by which to fully achieve the autism strategy's vision. Others said a Minister for Autism should be appointed.