The author of this article is on the autism spectrum, and she has chosen to use identity-first language. Madison House Autism Foundation uses both person-first and identity-first language, but we have decided to preserve the author’s voice for this article.
For young autistic adults and their families, not being able to find a job can be more than a temporary setback: it cranks up the fear of a lifetime of being stuck in a dependent and powerless place. This article looks at employment and what the autism community can do about this extremely widespread and important problem of the fear of powerlessness.
What are we trying to achieve?
We all have needs for food and shelter, along with love and friendship, and the other basics. And there are other needs that we all share, whether autistic or not, which are less highlighted in our culture – the need to belong to a community and contribute and learn, for example. Discussions about life planning for disabled people should stay focused on all those real needs, and not get sidetracked into believing that it necessarily rests on simply getting educational credentials and a job. Neither a job nor the money it yields are direct human needs; that’s just one means to meet some of those needs.
The capitalist economy works for those who own it, and jobs exist to serve its internal profit logic, not as a way to fairly distribute the work. The system is happy to eject anyone from the labor pool who is the least able to compete. As disabled people, that means us. It is important to recognize the seemingly hopeless situation, which is that we cannot change the mechanics of the whole system, and neither can we change all the individual workers to become more competitive.
What we can do – and this should be the major objective of autistic employment – is to carve out new corners of the economy where different values reign. These are ventures with a more collectivist and compassionate mindset, aimed at opening up opportunities for people to contribute more substantially. These are places where accessibility is built-in at all levels.
If we look at some of our institutional language, we see phrases like “re-integration into society” or “vocational rehabilitation.” This kind of language comes from the mindset that people are broken and can be fixed. Today we either try to “fix” the person enough to work in the system as it is (integration), or we have all the disabled people working together (segregation). The third way is to build compassionate and accessible workplaces where diversity is accepted, and people are neither integrated nor segregated.
I don’t think it should be an implied goal to avoid public assistance, and there is no more or less dignity in receiving money from a market than from the government. Instead, the goal should be positions where work meets the needs of the person – needs for authentic contribution, growth of responsibilities, and income sufficient to make autonomous economic decisions.
Accessibility and diversity
Autism is more about the diversity of things than about any one thing, so it is a hard condition to pin down. The very short summary of autism that I use is “independent + sensitive” – we find the typical social world overloading, and we build an autonomous mental/social universe apart from the shared one. Our universes spring from the senses, facts, and principles (like justice), not from cultural adaptability or conformity. We cannot be replaceable cogs in the economic machine; we are too different from each other and from the expectations of any given job description. Consequently, we need to think about “creating” jobs, not “getting” them, and the whole endeavor has to be a creative adaptation to neurological diversity. Thinking about “the kinds of jobs that are appropriate for autistic people” is not a productive thought because almost any kind of work could be appropriate. The thing that matters is whether the workplace is embracing diversity, not the exact type of work.
Let me mention two kinds of “togetherness” which will relate the concepts of integration and accessibility. The historic relationship between Britain and India is “together” in some ways, but not the warm fuzzy kind of togetherness. Instead, we call it colonization, because one side had all the power over the other. When we think about disabled and non-disabled people working together, and when it is organized as two tiers, that’s colonization too. The other kind of togetherness is where both sides move, and it’s not all about conforming to the terms of the colonizing power. In a workplace that aims to embrace diversity, everyone has to be willing to move. An access need of one disabled person may mean that the lighting or noise has to be controlled a certain way, or a myriad of other factors that might allow that person to work there as her whole self; therefore the other people might have to give up on certain positions that they might consider standard rights or norms in a workplace. Focusing on accessibility as the first concern therefore brings about the right kind of togetherness, so it isn’t the colonization kind.
For more discussion on deep accessibility, see this paper.
Since everyone is unique, there are no absolute rules for how to make a workplace autistic-accessible. Replacing fluorescent lights and having a quiet room is not enough. It’s individual and creative, and therefore has to be a subject of discussion and change over time, based on the specific people working there.
When it works
Although unemployment is high among autistic adults, I’ve experienced and heard of people working jobs effectively. It is usually a position that significantly honors the person’s independence and not a group environment that expects the person to be a “team player.” This could include any one-person business such as running a street vendor booth, stocking soda machines, or some professional jobs like web design. Working solo can allow the person to define and meet their own accessibility needs better than in a corporate environment. The other route that sometimes leads to a job is being so good at something that one’s qualifications far exceed the non-autistic candidates; in that case, the company may be willing to deal with what they perceive as the negatives of autism.
The common thread here to success is having some power over the job – or at least having a domain of responsibility. Autistic people, as a rule, are less disabled and appear less different when the environment isn’t as controlling. Working in a team setting without having a separate domain of responsibility to oneself can disable the person more. In past generations, corporate management was more hierarchical and people were required to meet their individual job demands; whereas today’s management style has changed to a more cooperative team approach, making it harder for autistic people to fit in. Workplaces with the older kind of management may work better.
Things to watch out for
Now, I’ll go over some of the big obstacles in autistic careers, which are some of the main things to consider when building an autistic-accessible workplace. One is the problem of expecting normal social behavior or a normal knowledge base. Autistic people can often be honest and non-competitive to the point of failing to shine the best light on ourselves. A typical applicant might say enthusiastically “I can” while an autistic person with the same skills might say flatly, “I don’t know if I can” because the latter is more literally honest. We don’t tend to understand “tit for tat” and elbowing our way up the ladder. We can be perceived as not caring. We can also be fairly out of touch with what’s hot (what sells) so we might not make good decisions about markets and selling. That’s a serious problem for those of us who can do independent creating – like crafts or software apps – but can’t run the business end of it as well.
The second area of obstacles is in failing to build accommodations for sensory needs and energy management. Autistic people very often have a range of sensitivities that are linked to depleting energy stores, which ultimately leads to chronic stress or melting down in some way. The sensitivities can be noises and lights and other physical things. A variety of interpersonal behaviors can also act as stress triggers. This can include interrupting or asking to do multiple things at once, or communication styles that are more foreign to an autistic way of thinking such as being overly tactful. All this together depletes reserves, and accommodations need to be made to help the person restore those reserves. It’s impossible to say what those accommodations should be because it depends on the person.
The third area of obstacles is consistency. It’s pretty common for autistic people to have reliability problems, such as not being able to work at the time or on the day when work is supposed to start. The problem may stem from depleted reserves, or going nonverbal/non-communicative. It usually is not a sign of how much the person cares about their job; it’s more an indication that levels of social functioning can fluctuate a lot. The job should ideally have some flexibility built in so that the fluctuations in availability don’t upset the whole business.
And finally, the last area of obstacles I will mention is with expecting too little. Sometimes work intended for disabled people is “dumbed down” to the point where it’s simply so boring that the person can’t maintain an interest in it. Or it just feels inauthentic, meaningless, or spiritually flat. It’s hard for us to muster the motivation for something we really do not care about. The job would ideally be connected to interests and be consistent with good values. (Autistics can be really into global justice; it can help to keep that perspective in mind when trying to figure us out.) Also, an autistic person isn’t necessarily qualified for what’s considered an unskilled or entry-level job in the general economy, such as restaurant work, so the whole approach of “working up from the bottom” is not necessarily going to work. Some of those lowest-paid jobs could be quite difficult for us, while jobs considered more complex might be easier.
Conclusion: How to build the workplace
In closing, here’s a list of points – things to consider about the accessible workspace that you might help create.
- Step out of the economy – Carve out a new niche that doesn’t have profit as the only bottom line. People want to support ethical business.
- Remember “sensitive + independent”
- Discuss and adapt – There is no fixed list of accommodations that we apply to people because of a label; instead it has to be ongoing and creative.
- Both sides move – The non-autistic people have to give too; all of the adaptation shouldn’t have to come from the minority side.
- Include all levels of accessibility – movement and physical, sensory, architecture, communication, and agency (control)
- Keep like minds together – Don’t isolate autistic people; instead, keep a balance of kinds of people. Let us help and train each other. An autistic trainer is likely to make more sense to an autistic trainee.
- Profit from the positives – We have skills that are marketable, and the niche businesses that are carved out should exploit things we often do well (for example organization, attention to detail).