Research suggests that volunteering and helping others can be beneficial for the mental health of the helper. This effect is believed to stand above and beyond any tendency for those with better mental health to be more likely to volunteer for things in the first place. Conversely, dependence on others and being a recipient of help can be bad for mental health. Indeed, a major component of the dominant interpersonal theory of suicide suggests that those who perceive themselves as burdens on others are at greater risk for suicide. Research with autistic people is quite consistent with this theory.
This is a problem for autistic and disabled people, as we’re often put into a position where others take on a “helping role” and leave us as the passive recipients of help. This dependence is an uncomfortable position to be in, and this research implies that it could hurt mental health.
Family and Professional Stress
Before going further, let’s get one thing out of the way. I don’t mean to imply here that professionals and family members have everything easy. Indeed, a large research literature is devoted to questions of parental mental health, affiliate stigma, stress, and so forth. Some parents may even develop PTSD. There are also studies like this one showing that stress can impact professionals who support autistic individuals.
There’s probably some optimum balance here. People’s mental health might suffer from dependence on others, but people’s mental health can clearly also suffer from the stress and demands of having to provide lots and lots of support, especially if the support doesn’t seem to be helping a lot in the short term. While some professionals can at least look forward to a respite from this stress when they go home at the end of the day, all of this may be worse for parents who don’t have anywhere they can go to retreat from caregiving demands.
I’m well aware of these issues, and I don’t intend to dismiss them. But it’s precisely because I think these issues are well-known that I want to turn to a question I think we don’t engage with enough, which is the impact of being a recipient of support on autistic people’s well-being and mental health. I don’t think the things I say here are some great revelation – these ideas of burdensomeness are hardly new – but I think we forget them too easily.
Perceived Dependence and Support
I’ve written elsewhere about how many autism supports and interventions seem to (often very explicitly) be based on assumptions that autistic people are inferior: that we are deficient. While this is definitely a complicated area, and I’ve written many posts that I hope can address some of the complexities involved in choosing among the pathology and neurodiversity paradigms, I do think there are alternative ways we can provide support without so openly conveying the idea that there’s something wrong with the people we are trying to support.
However, this idea that there is something uncomfortable and damaging about merely accepting support, and about dependence on help from others, seems to go farther in challenging the status quo of how we deliver interventions and supports today.
How can we provide people with the supports they need without making people feel like they are dependent on others’ help? Changing our language and assumptions and adopting more neurodiversity-aligned terminology, while helpful, probably doesn’t do enough to address this deeper, more fundamental problem.
This is a question that I believe requires some creative thinking, but my prior post about assumptions of deficits and pathology in services and supports has a thought that I think applies here as well. I suggested that we should try and set up a more equal relationship between the client and the interventionist. That partly means giving the autistic person more control to decide what king of support they need, but it also means trying to dismantle the implicit hierarchy – the roles of helper and helped – that can often be found when supports are delivered.