2. The Autistic Voice
Nearly one quarter of people who used our online portal raised the importance of involving and listening to autistic people, their families and carers in, for example, service delivery and planning. Participants raised this theme under each of the outcome-related questions as well as question five, so that they clearly believe the strategy's overarching vision can only be realised if autistic people, their families and carers are fully involved in decisions that affect them. Several people raised this theme in general or generic terms, including the following examples:
- 'Listen to parents'.
- 'Involve them and their families, listen to what we need'.
- 'Ask them. Speak to them and listen to them'.
- 'Ask us. Involve us. And when you ask us, believe us'.
- 'Listen to us'.
- 'LISTEN to what people with ASD want – aspirations and life goals'.
- 'Listen to the needs and requirements of autistic people'.
- 'Speak or listen to people with autism'.
- 'Listen to families and carers'.
- 'Hear their voice; learn their language'.
Participants were clear that any listening needs to be active and look to purposefully involve autistic people, their families and carers in the decisions that affect them. One described this as 'empowering' autistic people, while another said, 'do not make presumptions. Do not fall into the trap of deciding what is in their best interests'. A couple of participants raised the issue of parents or intermediate organisations speaking on their behalf, and who are 'often more vociferous than us and drown our voices out'. People should not assume that 'some mother with "thirty years" of autism experience knows more about what it is like to actually be autistic than her thirty year old offspring who actually HAS thirty years of autism experience'. Another said that, having listened to the person, you should then 'implement' their suggestions wherever possible: 'so often opinions are asked and never a return on what happened after!'. Autistic people are, after all, the 'real experts'. One participant said it is important the autistic person feels like they are being listened to and in control, and 'not being led on against our will, patronised or condescended':
I've attended one autism group where I felt I was being talked down to, but another where everyone was treated equally but respectfully, and on the same level as the neurotypical group leaders. Little surprise which I felt the most comfortable in by far, attended most often, and look back on the most fondly!
Some participants said there is an imbalance in the power relationship between autistic people and professionals and service providers, with the latter two often making assumptions about what is best for the individual. Here, participants spoke of 'equality', 'dignity' and 'respect'. As one put it, the 'first principle' is to 'ask autistic people and let them lead the debate…The culture in some services undermines the autistic voice and does not enable control…It is often the case that services focus on behaviour particularly when staff feel challenged or deskilled by [that] behaviour'. Other comments included:
- 'Listen to them instead of dictating to them based on your experience of the autistic spectrum…stop treating them as though they are stupid and really listen to them'.
- 'Schools, doctors, government officials have to acknowledge that the expert on autism is the person who has autism. LISTEN to the individuals. BELIEVE them when they say they know what do and don't need'.
- 'Listen to each individual and their needs. It's not good enough to have a blanket policy alone. By listening properly to each individual and not thinking you know what "they" need'.
- 'You need to listen to autistic people and not allow our voices to be drowned out by others, far too often professionals and carers are allowed to have a say over our lives even when we say we want something different'.
Some participants spoke of the consequences of failing to properly listen to autistic people, their families and carers. One recalled having to 'fight for 15 years' to ensure their child got proper educational support, while another also spoke of 'fighting' for years to get their son mental health support – simply listening to the parent in these cases would have made things 'better'. One participant said that despite being intelligent, they are not 'taken seriously on a regular basis', while another said she was made to feel like a 'neurotic mother' because she was not listened to. Another participant's daughter was misdiagnosed 'over and over again' because professionals would not listen to her parents' concerns. One family went through a 'total nightmare' because 'no one would listen', causing a deterioration in one of the parent's mental health.
Participants offered a number of suggestions about how autistic individuals could be properly involved in processes and decisions that affect them. A number of these discussed the importance of adjusting communication styles to ensure those who communicate 'differently' or have communication difficulties can be involved and understand what is being said. Some autistic people are non-verbal and communicate through 'expressions and gestures which only those closest to them can understand' - it is important those people are involved too. Autistic people need to engage with people who understand autism, who they can contact either face-to-face or by telephone to discuss their concerns. A couple of participants said it is important to promote the use of augmented and alternative communication and to invest in research on 'communication support', particularly for autistic people who also have a learning disability.
Others suggested that autistic people should have a 'voice' at things such as council meetings, to ensure they are listened to and that their concerns inform service delivery and development. Such services might also be 'designed, led and monitored' by autistic people, or have autistic people 'built into' their decision-making processes and structures. Local or regional working groups of autistic people could 'identify what is working well…and what would help people with autism to participate more'. Services and government could tap into parent- and carer-led support groups. Any engagement should include 'different people across the spectrum' and different groups, as well as people in different age brackets.
A large number of participants raised the importance of advocacy and advocacy services for autistic people, which were described as being 'worth their weight in gold' and 'essential' for people on the spectrum…to enable [them] to have a greater understanding of their situation and to give their views'. One participant said advocacy is 'key' to ensuring autistic people can live independently:
The difficulties with social and processing skills are a barrier to people with autism dealing with the demands of everyday life, especially meetings in work and with authorities. Providing a skilled advocate who can witness meetings, retain information, read the person and see when overload is becoming an issue, and direct both parties toward a helpful resolution, would enable those who need it to retain their autonomy.
Another participant said every autistic person should have advocacy services available to them in their local area, 'no matter what their situation'. Access to advocacy should be a 'right', and advocacy services should ensure people have information about their rights and options – 'advocacy can make a huge positive difference to the lives of people with autism'.
While important, some participants said services like advocacy should have the 'knowledge and understanding' needed to support someone on the spectrum. One said advocacy services need to be 'more appropriately skilled', since currently 'many…do not have appropriately skilled or experienced staff to communicate effectively with people with autism'. Existing services could be 'incentivised' to develop 'specialist teams'.
Some participants touched on the issues of funding and appropriate resourcing of advocacy services. One expressed their concern about autistic people 'receiving non-instructed advocacy because contracts limit the hours/time spent with advocacy partners to such an extent that people on the spectrum are not able to give their views'. Another spoke of advocacy interventions being 'limited', which in turn limits the time an autistic person can access an advocacy worker.