Monday, February 26, 2018

Why Is the Autistic Unemployment Rate So High?

Photo © Terry Chay | Flickr/Creative Commons
[image: A colorful office workstation with two large computer monitors.]
Maxfield Sparrow

In the United States, thirty-five percent of Autistic eighteen-year-olds go to college. Of those American Autistics with university diplomas, only 15 percent are employed. This 85 percent unemployment rate (among college-educated Autistic adults) is massive—the general population’s unemployment rate (at all education levels) is only 4.5 percent.

There are some obvious reasons for this disparity. Just as with all Disabled people, workplace understanding and accommodations are a huge reason why Autistic people have such a hard time finding and keeping employment. Making it past an interview can be an insurmountable hurdle for many of us. While organizations and employer programs are popping up to help Autistic adults find and keep employment, with an estimated 50,000 new Autists entering the workplace every year, the few programs that exist cannot possibly keep up with the demand.

What many don’t realize is that the Autistic unemployment rate is higher than the unemployment rate for all disabled Americans in general (disabled people comprise about 20% of the population and have an unemployment rate of 10.5%) and higher than the unemployment rate for non-Autistic Americans with developmental disabilities (people with intellectual disabilities have an unemployment rate around 21%.)

Aren’t There So Many Unemployed Autistic People Because of Those With Severe

In case you aren’t familiar with unemployment terminology, I should note that these unemployment rates for disabled Americans do not reflect whether some of us are too disabled to work at all. By definition, an unemployment rate only counts those who are ready to work and actively seeking employment. The Census Bureau divides the adult population into various groups, and people of working age are either counted as being in the workforce or not. Someone who is not in the workforce is not only not working but not even looking for work. The unemployment rate for any group of people—whether Autistic, Disabled, or the general population—is the percentage of the workforce who are not employed. Those too disabled to work are not in the workforce to begin with.

This also means that those Autistics who have become discouraged by the difficulty in finding employment and have given up looking for a job are not counted in these unemployment figures. Autistics who are living in institutions such as jails or hospitals are also not being counted in the unemployment figures. A much higher percentage of all Autistic adults than that 85% unemployment rate are not working for a variety of reasons. Those adults who are not institutionalized and who are prepared to work and could be in the workforce but have given up are called “discouraged workers.”

In the United States, the estimated number of discouraged workers in the general population is 451,000. The CDC has estimated an autism prevalence of 1 in 68. If that proportion also applies to discouraged workers, that would mean 6,632 discouraged Autistic workers. I couldn’t find a statistic for how many of those discouraged workers are Disabled or Autistic, but the actual statistics are so horrifying I don’t really need to add discouraged workers to those numbers to convey the employment crisis Autistic adults are facing.

So Why Are So Many Autistic Adults Unemployed?

The unemployment rate for all Disabled people is 10.5%. That rate accounts for stigma, lack of understanding, lack of appropriate accommodations, internalized and external ableism, plus all the reasons that lead to the 4.5% unemployment rate in the general population. The unemployment rate for Disabled people with non-autistic developmental disabilities is roughly twice that, at 21%. That leaves another 64 percentage points unaccounted for when we are looking specifically at Autistic members of the workforce.

I’d like to try to connect the dots a little bit by talking about a few of the special issues Autistic people face when we can’t find and keep employment as well as factors that drive some Autistic people from the workforce, converting them to discouraged workers.

Unusual Stigma Pattern

All disabilities come with social stigma and presumptions of incompetence. Autism comes with a particularly unusual set of assumptions that leave the Autistic person pressed from both directions into a pinched space no one can actually live or work in. This twin set of oversimplifications about who and how Autistic people are may be one of the biggest barriers to employment we face.

Most people get their understanding of autism from television and the movies, so the average person “understands” autism through models like the counter of toothpicks and playing cards who is re-institutionalized because he can’t use a toaster safely. On the other end of the representation spectrum are the socially naive surgeons people tolerate because they’re so incredibly brilliant at saving lives. Actual Autistic adults seeking employment fall somewhere inbetween those two portrayals by an extremely wide margin, which means there’s no room for us.

People who think autism is Rain Man will not even consider hiring us, because being Autistic means we’re obviously incompetent. If they meet us and we do not come across as incompetent, we’re obviously lying about being Autistic—not something likely to make an employer interested in hiring us.

People who think autism is savant geniuses like Dr. Virginia Dixon from Grey’s Anatomy and Dr. Shaun Murphy from The Good Doctor don’t understand why we need accommodations if we’re so brilliant and accomplished. They are disappointed, or even angry, when they learn we’re bright and motivated but just regular people. (My apologies to you if you actually are a real-life brilliant Autistic superstar like Dr. Temple Grandin, whose work in animal husbandry and slaughterhouse design is accepted internationally as the game-changing genius work it truly is. The majority of us are not.)

The vast majority of Autistics in the workforce fall through this “crack” between too-low expectations and too-high demands and either get turned away from employment or offered underemployment positions that do not pay enough money to support us. If we do not disclose our autism, we are viewed as “weird” or even “creepy” by potential employers and co-workers who can see our differences but can’t understand what is behind them. If we do disclose our autism, we face the strangely-shaped stigma that comes from not being well understood by a population flooded with “autism awareness” campaigns that deliver little useful content that could lead to genuine autism acceptance.

“Falling Off The Cliff” of Low Expectations

When Autistic people reach age 21, they age out of most available services. Some people call this “falling off the cliff” because of the drastic change one day (a birthday) makes is as sudden as hiking along a trail only to step off the edge of a cliff. When that cliff comes, it hits hard, especially for those who were previously underestimated and thus not prepared for employment. I have watched schools and families underestimate Autistic young adults and actively steer them away from an employment path. When those young adults age out of the system, there is nothing available to correct the skewed trajectory they have ended up on.

What happens to those who fall off the cliff? Some never enter the workforce in the first place. Some try and end up gravely underemployed. Some end up as discouraged workers. Some end up institutionalized. Statistics tell us that many end up dead from suicide. A study of newly diagnosed adults with Asperger’s syndrome found that 66% had felt suicidal, and 35% had attempted suicide. Of course that doesn’t count the number who attempted suicide and succeeded—we just don’t have statistics for that. We don’t know how many lives have already been lost, many before even being identified as Autistic and being counted among the 85% of unemployed Autistics and unknown number of Autistic discouraged workers.

Multiple and Sometimes Conflicting Needs

Not only do Autistic workers and Autistic would-be workers face the struggle for acceptance and the struggle for accommodation, but Autistic people experience a higher-than-average rate of other issues that affect employability such as gender and sexual identity issues and other, co-occurring disabilities.

Autistic people are seven times more likely to be Transgender than the general population. Since the Transgender unemployment rate is three times the unemployment rate among the general population, the intersection of autism and gender identity issues is bound to be another aspect that explains the high rate of unemployment among Autistic people. Other marginalized gender and sexual identities experience high rates of workplace discrimination and poverty as well. These difficulties compound the employment struggles Autistic people already face.

As for other disabilities, nearly half of all Autistic people meet the criteria for anxiety disorders, between 10% and 33% of Autistic people qualified for the workforce have epilepsy, around 30% of Autistics also have obsessive-compulsive disorder, Autistic people experience at least double the amount of sleep disorders as the general population, and so on. There are other conditions that are not yet strongly documented in scientific literature but which the Autistic community has noticed appearing at a much increased rate among us, for example Ehlers-Danlos syndrome. Just as being multiply disabled presents extra challenges in education, it presents extra struggles in employment.

An example from my own life: in addition to being Autistic, I have other disabilities. Two of them have access needs that conflict with each other in ways that significantly narrow the pool of jobs I am capable of pursuing. I have a circadian rhythm disorder called N24 that requires me to have a great deal of sun exposure in order to maintain a schedule compatible with work. At the same time, I have Ehlers-Danlos Syndrome which significantly limits me physically, ruling out jobs like park ranger, groundskeeper, or construction worker. I am not physically capable of the heavy manual labor that comes with outdoor jobs but an indoor job makes it impossible for my brain to keep accurate time, sending me into a schedule more fit for living on Mars. I can’t keep a job when I keep falling asleep in the middle of a sentence at work!

Draconian and Discouraging Social Security Rules

To continue with my own situation, I realized I would have to “think outside the box” when it comes to employment, so I have been self-employed for the last several years, working on building up my own business. I have run into many other Autistic people who are pursuing or attempting to pursue the same course themselves.

The main ingredients to self-employment are possessing a strong skill that there is also a demand for and having sufficient support to develop that skill into marketable products and/or services. Some governments even offer support, such as Australia’s New Enterprise Incentive Scheme. Autistic self-employment can get pretty far outside the box. For example, Brad Fremmerlid assembles IKEA furniture for a fee. That’s a business so many people are eager and grateful for that it’s surprising it didn’t already exist.

In my own case, I’ve come up against all the difficulties of starting and running one’s own business—including the fact that my business is still not fully independently supporting me—and something even worse: Social Security rules. The Social Security Administration wants disabled people to work. Their rules for those who pursue traditional employment are generous and easy to work with. Since most jobs provide regular paychecks, a person’s Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) is reduced according to what their monthly income is. (I apologize for focusing on the U.S. here. I don’t have experience working in other countries.)

As a self-employed worker, my income is irregular. One month it can be very high and another month it can be very low. My business expenses are also variable and sometimes the highs and lows of expenses do not come in the same months as the highs and lows of income. After some wrestling over the royalties from my memoir, No You Don’t, the Social Security Administration (SSA) and I came to an agreement: I would file taxes every year and they would adjust my benefits check based on my tax return amount.

As it turns out, they weren’t able to stick to their side of the agreement. I had a phone interview with the SSA late last year in which they insisted that I had to pay them back for an overpayment due to my income being too high. I tried to talk about the plan we already had in place but they would have none of it. They docked my SSI check.

Now that I have filed taxes, I see that not only did they not overpay me at all, I had a business loss last year. My business expenses were slightly higher than my business income. So now I am struggling along on a diminished benefits check and the same uncertain, variable business income and expenses. One thing has changed: once again, I am wondering why I am doing this? Why am I working so hard to build a business only to have to pay the government and have zero profits to live on?

This is not just my story. I have heard similar versions of this from so many other Autistics trying to start or continue their own royalty-based business for their writing, art, music, etc. I am dangerously close to leaving the workforce and returning to the ranks of the discouraged workers. After all, why should I try if the government is just going to break its word to me, and come take away what little I have?

What Help Is Available?

If you’re still with me, you’re probably reeling from the bleak picture I’ve painted. Fortunately it’s not all so grim! First, an 85% unemployment rate means that 15% of Autistic workers are employed! Okay, that’s a horrible statistic, but those people who make up that 15% need us to remember them and support them. Many of them are just hanging on by a thread and could lose their job any day. Many of them are stressed to the edge of breaking. They need more accommodations and more understanding. While we need to work hard to improve life for the 85% who are not succeeding, we can’t forget to take care of that 15% who have jobs.

When it comes to self-employment, in addition to government programs to encourage small businesses and the assistance and mentorship of offices of Vocational Rehabilitation, you can check out this mini-guide written by a self-employed Autistic for other Autistic people who are considering self-employment: Self-Employed Aspie. Cynthia Kim has more than one iron in the fire, since she wrote this series before starting the company you are probably more familiar with, but she’s also the entrepreneur behind Stimtastic. Another popular article written by an Autistic for other Autistics is Silent Wave’s essay: Self-employment for people on the Asperger’s/autism spectrum.

There are a few companies out there attempting to match Autistic workers with understanding employers. A big complaint a lot of people have about these companies is how computer-focused they are. There is an assumption that all Autistic people are great with computers and should go into computer work for a living. This is untrue, and focusing only on computer work leaves a huge number of unemployed Autistics out in the cold.

On the other hand, many Autistic people actually are good with computers and attempts to help reduce our unemployment rate had to start somewhere. Matching Autistics up with computer jobs was easy, and so between stereotypes and the path of least resistance, this is what we have the most of right now. I suggest we thank those people who are working to offer us computer jobs and ask if they have anything else. I am grateful that these tech companies exist and I will do all I can to keep getting the word out to people who might want to start another business to help us: we need a wider variety of job types available to us, please!

With that said, here are some of the groups that I’m aware of. Some don’t immediately look like job-finding organizations but have indicated in interviews that they do this work. When in doubt, contact a group to see if and how they can help you. In no particular order: