This is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.
P is for Poverty
I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults who are (often quite literally) starving and I worry about the children – what, if anything, will be there for them when they grow up?
Autism . . . well, disability of all types, actually . . . and poverty go hand in hand. That is not to say that every Autistic adult or every disabled adult lives in poverty. But a large percentage of us do. At a time when poverty and unemployment are declining among the general population, both are on the rise among the disabled population. The U.S. Census Bureau reported that in 2013 the U.S. poverty rate fell to 14.5% but the poverty rate for disabled people rose to 28.8 percent. The overall unemployment rate dropped to 6% but for disabled people it was over twice as high at 12.8%. Seventy percent of the general U.S. population over the age of 16 are participating in the workforce while only 20% of the disabled population over age 16 are participating. Bear in mind that “disabled people over the age of 16″ is a category comprising some 29 million people — 9% of the total U.S. population. No one knows how many Autistic people there are in the United States, but a reasonable estimate (based on the 1-in-68 statistic) is 4.6 million, roughly 3.5 million of whom would be over the age of 18 (based on the age skew of the general population.)
For those three and a half million American Autistic adults, as well as their counterparts world-wide, the statistics are even more harsh.
Transitioning is more difficult for Autistic young adults than young adults with other disabilities. The National Longitudinal Transition Study-2 found that, when comparing adults aged 21 to 25, only 17% of Autistic young adults have lived independently, compared to 34% of young adults with intellectual disability.
In the UK, The National Autistic Society (NAS) reports that only 15% of Autistic adults are employed full-time and as many as one-third of adult Autistics have neither employment nor access to benefits. The Simons Foundation Autism Research Initiative (SFARI) reports on Norwegian studies that find “mildly affected” (SFARI appears to dislike that phrase as much as I do) Autistic people having just as much difficulty with employment as people elsewhere on the autism spectrum.
Shattuck and his team did a literature review of services for adults on the autism spectrum and found (not surprisingly) a meager amount of data available. Job support was rated highly as “evidence-based” but I was concerned about the strong emphasis on training Autistic adults to perform as costume mascots in front of retail stores. It’s a valid job, yes, and I’ve met some people who do seem to love it. But isn’t there anything else for Autistic adults? Even those with university degrees too often remain unemployed. Or work part-time and cannot support themselves on their income.
When efforts are made to help us get higher-paying jobs, so often everything seems to be centered around computer work. I’ve listened to many of my fellow Autistics complain that job assistance keeps pushing them toward computer and tech jobs despite their dyscalculia or other learning disabilities that make them unsuited for math and tech work. Moreover, many people seem not to realize that the computer industry has shifted over the course of the last twenty years or so. There was a time when computer work was a great choice for the socially disabled because there was a high need for skilled workers and few people with the skills to fill those jobs. Workers lacking in social skills were able to land secure, high-paying employment despite going down socially worse than a lead balloon in job interviews.
But that time has passed. So many people train for the computer industries these days that competition for positions is high and jobs primarily go to those who are socially competent, who interview well, who have strong people skills. Still, the mythology lingers — have no social skills? Go work with computers! It’s a damaging mythology because it can lead people to feel they don’t need to work on interview skills or office socio-political competence because their tech skills will carry the day. And career counselors still try to funnel Autistic people into the computer industry without realizing that many of us will need just as much workplace support there as in any other occupation. (And without realizing that a significant portion of employable Autistics are more suited for work that uses other skills — with words, images, music, animals, etc.)
I read a very interesting paper written by two Autistic people, Rachel Silverman and James Williams, about employment and self-sufficiency issues. One of their suggestions was to join the “autism industry”: “First, they develop a book, artwork, jewelry, photography, or other salable product. Then they can rent space as exhibitors at autism and disability conferences for free or low cost. They can sell their products at these conferences and earn income in this fashion.” This is an intriguing concept and one I seem to be pursuing, myself, though I haven’t been to a conference (yet?) But is there room for three million workers in the “autism industry”? I honestly don’t know. Maybe. Maybe not. Professionals rarely listen to us, but parents in increasing numbers are thirsty for our perspective. I do encourage all Autistics to make their voice heard (or seen. All communication styles included!) because a richer, fuller understanding of autism depends on a rich, full number of Autistic voices fostering that understanding in all its complexity and diversity.
Temple Grandin leans in the other direction, advising people not to become “professional autistics,” but rather to follow her footsteps of holding a “real job” and advocating for autistics on the side. If only we could all achieve her level of professional success! Beyond that complaint, I am wondering where all those “free or low cost” conference opportunities are. Every time one of my Autistic colleagues is invited to present at a disability or autism conference, they have to throw a fundraising campaign to try to get the money together to attend. Is the “autism industry” an option for talented, underemployed Autistics if the cost of attending conferences is a nearly insurmountable barrier?
Another valuable point in the paper by Silverman and Williams is that so much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs and I don’t want to cut back on those efforts at all. It is very important to help Autistic people get and keep employment. But Silverman and Williams point out that we aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, many of our health needs (for example, special diets for people with celiac, a condition that occurs more frequently in the Autistic population than the general population) are expensive enough that a living wage for a non-disabled person is not a living wage for some of us.
When the data indicates that a third of Autistic adults have no job and no disability benefits, it is clear that an unacceptable number of us are falling through the cracks . . . and those “cracks” are actually gaping chasms. I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits. I applied for SSI (U.S. disability welfare benefits for those who have not worked enough to get the income-based SSDI (a federal insurance program for disability)) several times before I finally got it — not because I was being turned down, but because I was too homeless and struggling to keep up with the application process. I’d get an address, apply, lose the address and be too busy trying to keep myself fed and safe to even think about how to follow up on the application and so it would lapse. When I finally got enough stability to follow through on the process, I was awarded SSI in less than 2 months from initial application — apparently, my case was what one might call a “shoo in.” But when I couldn’t keep a mailing address for two months, even a case as straightforward as mine was stymied.
Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce. I think there should still be a strong focus on supporting Autistic people in employment goals. But it’s clear that it’s time to admit that some Autistics — even some highly educated Autistics — are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance in finding and keeping online employment, a more individualized approach to vocational assistance, and a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.
I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in sub-standard conditions — for example, without running water or heat. I’ve been in that position myself, too. Our poverty levels are more than twice those of the general population and we are a very vulnerable population, comprised of many people who do not know how to ask for help with homework or cooking, let alone help with income, housing, healthcare, and survival. There needs to be more autism-accepting, non-judgmental assistance we can turn to. There need to be people trained in helping us get and keep employment and helping us get disability benefits. Too many of us are homeless, hungry, and without adequate medical care (both due to the barriers described earlier under “H is for Healthcare Access” and due to the economic barriers that still exist, even after the passage of the Affordable Care Act in the United States and the existence of universal healthcare in other places such as the UK and Canada.)
Yes, some of us are doing very well. But we aren’t all Silicon Valley workers. We aren’t all Temple Grandin or John Elder Robison. And many of us are living with aging parents who don’t have the resources to set their adult children up for life after they are gone. We need help and we need it now. So many articles talk about children aging out of the system and having nothing to turn to, as if it is a new crisis. The crisis is not new. We have always been here. Watch the film Wretches and Jabberers to see one example of an intelligent and powerful Autistic man who personally lobbies with politicians, yet is homeless. There are Autistics of all ages — and I mean all, including people in their 70s and 80s — who have been living in crushing poverty for decades. It has been a silent crisis for too long. We need help now.