June 21st, 2017

Are We Giving Parents Bad Advice?

Autistic adults often tell the neurotypical parents of Autistic children to listen to us. This advice is frequently repeated, and it’s such a fixture of discourse in our community that it isn’t often examined. Its implications aren’t thought through as often as they should be. If it were, it might well have been abandoned by now. We should stop using things like ‘hear Autistic voices’ and ‘listen to Autistic people’ as platitudes because these statements aren’t effectively explaining what we hope parents will learn and do. The old saw sets some parents on the path to good information, but it is easily misinterpreted and sometimes deliberately twisted into an excuse to avoid listening to what most Autistic people have to say.

When parents are advised to listen to Autistic people without further instruction on how to do that, they often go looking for opinions alone on the internet. The parents with the best intentions may latch onto the first or loudest people they encounter. Others may look for Autistic adults who will tell them what they want to hear. Often, these individuals are not Autistic leaders or seriously involved in our community. Their opinions are not representative of our range of mainstream opinion and cultural norms. A parent is more likely to stumble across radical bloggers with noisy followings, motivational speakers many would term ‘professional autistics,’ and figures like Temple Grandin, who deliberately stand outside of our community, than average Autistic people.

When we tell parents to ‘listen to Autistic people’ without explaining what we really want them to do, they often follow the path of least resistance to fringe views. A popular motivational speaker may have no expertise beyond personal experience. A controversial blogger may be dogmatic about a very narrow slice of Autistic opinion and provide no information on anything else. A parent who stumbles across an initial community contact who is self-serving, who sees other opinions as heresy and anyone with different ideas as a rival, may have trouble getting access to more information. The people who are quickest to hold themselves out as experts are not always the most knowledgeable or altruistic and don’t always have particularly representative views.

Eventually, more mainstream advocates appear to criticize those views, and the parents become resistant or confused. Often, they respond by saying that people who identify with the Neurodiversity Movement only want parents to listen to Autistics with whom they agree. This is true of us, to an extent, but no more than it is for everyone with an opinion. Parents who mean well walk away from these exchanges not knowing where to turn for help. Parents clinging to prejudice find it easy to dismiss the bulk of Autistic opinion. Advising people to ‘hear Autistic voices’ without explaining what that actually means is feeding that dynamic, perpetuating bickering, and making it hard for parents to find what they need and support their children as well as possible.

What we should be saying is that there are many Autistic people with a wide variety of opinions and degrees of knowledge and connection to the community. Opinions are ubiquitous and varied. People have all kinds of motives. There are, however, areas of widespread consensus. The best way for someone who is new to this to absorb all the nuances and complexity is to browse the whole buffet of ideas. Go to in-person events, if possible, and lurk or ask questions in many different corners of the Autistic internet. Research widely, i.e. learn about what lots of Autistic adults are saying, more than deeply, i.e. a lot about what a few people think, at the beginning. Try to find a diverse sample in terms of age, gender, race, geographic location, religion, and sexual orientation.

Many of our conflicts with parents are legitimate, but we’re unfair to them when we don’t adequately explain what we hope they will do and then castigate them for failing to do it. Teaching parents how to interact with, and get the most for their children from, our community is too important to address haphazardly. The right advice is to tell parents to look at a wide variety of opinions, find the points of consensus, and learn what leaders and average Autistics think. The more we can be clear, the more parents who want to do the right thing, seek information from adults, and incorporate the Autistic world into their children’s lives will be able to do so. When those of us who are willing to take the time to work with parents give the best possible advice, we draw them toward our community and increase our chances of being able to nurture and protect Autistic children. This is too important to be left to tradition and platitudes. The words we have used aren’t working because they are too easily misinterpreted, whether innocently or with an ulterior motive. We need new ones. We need to be clear and specific.



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