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.



Temple Grandin has Opinions

This past April, Dr. Grandin sparked controversy by opining again, though many of her Autistic peers wish she would refrain from being so vocal. When she expresses herself, it’s something of a headline within Autistic circles and, often, outside. This is because outsiders frequently perceive her as an expert on Autistic experiences or community leader, although she has deliberately avoided living in the Autistic community. Dr. Grandin is rare, and justifiably admired, for being well into middle-age and open about her disability. In an ideal world, younger Autistics could ignore her occasional, outlandish statements and respect her for surviving the bad, old days just as many of us do around holiday dinner tables with certain relatives.

Unfortunately, the undue weight neurtoypicals place on whatever she says, and the chance of younger advocates perceiving her as a role model, makes it difficult not to respond. The paradox of Dr. Grandin-as-autism-pundit is that, while her self-imposed exclusion from Autistic circles leaves her out of touch with the experiences of many who share her disability, she is an astute observer with a keen intellect. Her recent statements about younger, Autistic adults have not been entirely wrong, but she missed or ignored important factors that contribute to some of the problems she described.

The latest kerfuffle was over her harsh words about unemployed, Autistic adults. Dr. Grandin has expressed perplexity at people’s difficulties finding work where they are what she would term “high-functioning.” She has treated unemployed, lower-support Autistics with anger and disgust and accused parents of causing our high unemployment rate by teaching learned helplessness. This caused an outcry. People were upset that Dr. Grandin had passed harsh judgment on those who can’t find work, but it should hardly have been surprising. It wasn’t the first time she has belittled unemployed Autistics without recognizing the barriers to employment which prove insurmountable for all too many.

Part of the reason that people, especially neurotypical parents of Autistic children and adults newer or less connected to the community look to Dr. Grandin as an example is that she is a best case scenario for Autistic outcomes. She is wrapping up a long career in a field she likes. Between her wise decision to pick a field aligned with her talents, her good fortune in having marketable talents, and her strong work ethic, she excels. She is financially self-sufficient. She has the independent living skills to live a self-determined life in society as it exists, with its many imperfections as to disability support.

Dr. Grandin seems justifiably proud of her hard-won achievements. She is probably not wrong that her strong work ethic, determination to do for herself, and willingness to bend some to accommodate the neurotypical world have helped her thrive. She is not wrong that some parents are so risk-averse that their children have difficulty growing, making healthy mistakes, taking charge of themselves, and building the best lives they can. Practically every advocate identified with the Neurodiversity Movement has a story about a parent thwarting a teen or adult child’s independence. However, just as many parents overdo it in the other direction in hopes of a cure or in perfectly reasonable fear of a life spent in the catch-22s and enforced poverty of disability systems. Teaching the will to try is important, but what Dr. Grandin often fails to recognize is that it isn’t enough.

If she had not intentionally excluded herself from the Autistic community, she might have encountered more Autistic people and learned that the road she traveled is even harder for others. She might have heard about how far fewer options would have been open to her if she had, for instance, never learned to drive, either because of a genuine impairment in that area or because of a family too fearful to let her try. Could she have followed her gift for cattle as far as it would take her if she had been trapped in urban areas with good public transportation, or would she have been locked out of her dreams, stuck in jobs for which she had little talent? Had her parents been poorer, would she have ended up in educational environments where her potential was recognized and supported?

If Dr. Grandin listened to Autistic millennials as much as she lectures, she might have discovered that increased awareness and the disclosures that come with today’s legal protections for disabled people are double-edged swords. In the right environment, they leads to more supports. In the wrong ones, they make the individual more vulnerable to discrimination. The economy is harsher these days, especially for young people. Real wages are lower these days. Staples of getting by and getting ahead, such as access to education and healthcare, are more costly. Many entry-level jobs require experience in the form of unpaid internships. Personality testing and an employer focus on ‘fit’ can be hard on Autistic job applicants.

The obstacles that Dr. Grandin overcame to succeed, including flagrant gender discrimination, were very real. So, too, are the obstacles younger Autistics, but Dr. Grandin seems unwilling to recognize that. If people do give up, it is sometimes because they are exhausted from fruitless striving. The criticism Dr. Grandin received last month may seem harsh. Some of it was, but it is likely to continue until she decides to stop being a public figure or put her platform to better use. Autistic adults, especially those who are financially struggling, are justified in their distaste for her as long as she refuses to listen to the people for whom she claims to speak. She will be a divisive figure until she either gains the expertise she claims to have or sticks to the field in which she is already world-renown.

How to Have an Okay Autism Conference

an empty auditorium is full of chairs. there is a stage with a podium and blackboard at the front. a projector hangs from the ceiling

Conference Season is Coming

April is coming up, and with it, autism conferences. If you’re Autistic, you probably know how fraught these events can be. If you’re not, you may not be aware of that because disabled conference speakers don’t always speak up. Some people may be afraid to acknowledge problems. Others may find translating the indignities of being a disabled conference speaker from disabled to mainstream culture and experience too overwhelming or exhausting try. Putting up with painful or uncomfortable things is sometimes easier than explaining them to nondisabled people in hopes that they will change. The challenge is that certain forms of disabled conference speaker-hood can be dehumanizing. Being an Autistic speaker sometimes being questioned about personal matters in front of large crowds of strangers, being asked to explain the behavior of Autistic strangers not present, and being expected to politely ignore any dangerous, quack autism treatments on display. It usually involves exposure to condescension, assumptions about Autistic people, inspiration porn, and repeating autism 101 information over and over again. It almost always involves feeling scrutinized like an animal in the zoo and being in close contact with the representatives of groups with which the Autistic community has a troubled history.

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Day of Mourning 2017

Tonight, people will gather around the world to mourn persons with disabilities killed by their caregivers. Some have loved ones who also remember and miss them. Many were kept so isolated by those who would eventually murder them that they were largely strangers to the world. Their memories are little more than names we read at vigils because they were ours, though we did not know them, and maybe an old school picture online. It’s good that we remember them. We wouldn’t be people, much less a people, if we didn’t remember our dead. While we mourn, though, we can’t forget the living.

If things go badly with healthcare and benefits law, more people will die in the months to come. There won’t be many colorful stories of violence to attract media attention. These deaths won’t make the news. We won’t hear about most of them. They will happen quietly in ERs, family homes, and nursing homes. People who are just barely hanging on at the margins with the access to services and care that they have now will fade away almost unnoticed. Many more will slide into a living death in facilities. The people we loose will look like the average person on a Day of Mourning vigil list: extremely vulnerable because of youth, age, or a significant impairment, isolated. They’re ours, too, whether or not we know them, and we owe them our loyalty, our advocacy. Care about them, too. If you live in the U.S. and are fortunate enough to be able to attend a vigil, think about reaching out to your representative first.

Who Will We Be?

Communities are funny things. They don’t exist until a critical mass of people believe they do. They’re stories that come to life if people tell them loud and long enough. Behave as if a people exists, go through the motions determinedly until it stops feeling artificial, and something will start to solidify. The story of an Autistic people that we are telling together becomes more tangible every day, but we have time to make decisions while things are still malleable. Especially as we enter a time of adversity in the U.S., we need to make choices about what turns this narrative will take.

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