Non-verbal (or developmentally delayed pre-verbal) autistic people, don’t have a “voice”. Various therapies (such as facilitated communication) and organisations (such as ASAN) purport to find them that voice, albeit it through other people. There is always a danger in claiming you speak for someone else. The dangers range from “simply” misrepresenting their views and opinions, all the way to actively endangering their long-term well-being.
The examples I mentioned above – facilitated communication and ASAN – are controversial to say the least. But is there more danger in not providing non-verbal autistics a voice, than in providing them a contentious and incorrect one; would their interests go unacknowledged and over-ridden without such controversial measures?
There are some vital considerations that seem to get side-lined in the passionate rhetoric that supports providing a voice in those ways. Two that I’m going to expand on a bit here are that the autistic person is very likely to already have someone providing an informed and caring voice, and that there needs to be a focus on providing autistic people with means to express their genuine voice (which need not be verbal or written).
At the risk of stating the obvious, every autistic person comes from a family. From the moment of birth, parents are given the role of speaking on behalf, and making decisions in the best interests, of their children. They are uniquely informed to do these tasks: They have the unrivaled life-time of knowledge and experience. If someone else speaks on behalf of their children – whether young or grown into adults – and it clashes with their own intimate understanding of their child’s views and needs, then it makes sense to listen respectfully to those parents. Parents aren’t around forever, but you hope that siblings and extended family will step up and continue to speak in the best interests of the non-verbal family member.
Where there is a possibility – however remote – that an autistic person will be able to find their own voice with time, then that must be the focus. There are no short-cuts to finding their genuine voice; it’s a long hard road to teach verbal and written communication. Communication is not just in the form of words either – as every parent of an autistic child well knows. Communication comes in the form of sign-language, facial expressions, eye-movements, gestures, touching, and even meltdowns. It is far better to grasp at and build on these efforts to communicate, rather than to try to artificially speed up the process by claiming to be their actual “voice”.
There remain problems though, of genuinely understanding the “autistic perspective”, and of protecting autistic people from well-meaning but misguided family members.
However, the “autistic perspective” is not some singular thing. The idea that one person from within such a broad spectrum, can speak on behalf of all others, is absurd. Yes, there are some seemingly universal experiences that autistic people have in difference from neurotypical people, such as thinking very literally and in pictures. But the way autism manifests, and how severely it affects a life, differs hugely. And, more importantly, being autistic does not rob you of your individuality. Autistic people can and do vary in their political beliefs, their life-goals, their preferences and priorities. Even in their attitudes towards their own autism and how it impacts – both positively and negatively – on their lives. To claim to speak on behalf of all autistic people, treats them like some hive-mind.
There is also the concern that family members speaking for non-verbal people, do not have their best interests at heart, or are seriously misguided in their attempts to do their best (such as resorting to chelation as if it could cure autism). But this is not a problem unique to non-verbal autistic people; even verbal children can suffer such indignities and errors. The government and the law is set up to protect the interests of the vulnerable people in society. Bad medical decisions can be questioned in a court of law, and systems are in place already for caring for abused or neglected people. These systems are not perfect, but they do exist for the small percentage of people who are not looked after by their own families the way that they should be. The vast majority of families like mine, do everything we can to set up our children to be happy and flourish.
Listening to the perspective of autistic people – about both their own lives and about autism more generally – is very important. But when their voices are co-opted – and replaced rather than revealed – by other people (no matter how well-meaning), we need to speak up for them. We must not let our children, our family members, our friends, become pawns in other people’s agendas, whether that be to further the popularity of a highly questionable therapy, or to promote a particular ideology.
It is wonderful to respectfully represent the interests of those who cannot speak for themselves. It is far from wonderful to do it in a way that robs them of their individual voice.