Tag Archives: Housing

Autistic Poverty, Part 2

Autism, Housing, Human Rights, Poverty, , ,

Throughout the U.S., at least half of autistic adults reside in a family member’s home—even when they would prefer to live on their own.[1]  Sometimes they just don’t have the skills to live independently, but more often they can’t afford to, because they don’t earn enough.   If they come from a financially stable, functional family this may be frustrating, but it is still the best solution.  Unfortunately, though, some impoverished families become even worse off as their autistic child reaches adulthood.  While most autistic adults living with family members do receive SSI, some households receive SSI benefits for their autistic child, but then lose the benefits after the child became an adult.  So there may actually be less money available to pay for an adult child living in the home than there was for the young child living there.[2]  This creates a very stressful situation, both for the family and for the autistic adult.[3]

An even more troubling issue is that of familial abuse.  Sadly, many autistic adults are trapped by poverty into abusive, even fatal situations at home.[4]  The mother of one Wisconsin 21-year old locked him in the basement with only a bucket for a toilet.[5]  In Louisiana, an autistic woman whose parents were dead was “taken in” by her cousins.  They stole her SSI checks, kept her in a cage, beat her, shot her with a B.B. gun, and forced her to consume her dead mother’s ashes, among other horrendous acts.[6]  Some of this is simple sadism, but the cause of abuse can also be a refusal to accept the reality of autism.  One young woman wrote:

my parents do not want a child like me. They want an outgoing, socially normal, confident child, which I am not, and never have been. However, they pretend to themselves that I am all the things they want me to be, and when I am not they berate and punish me for being lazy, selfish, arrogant, heartless, acting stupid etc. They pretend that the only reason I am not what they want me to be is because I am badly behaved, so they punish me and yell at me when I am myself.[7]

Living with family can be a good solution for some adults, but it also can be a tragic one.

[1] The Autism Housing Network estimates that 87% of autistic adults live with their parents, but only 22% actually want to live with them:  “Statistics to Share,” on the Autism Housing Network website:  https://www.autismhousingnetwork.org/education/statistics-to-share/.

[2] Manasi Deshpande, “Does Welfare Inhibit Success?  The Long-Term Effects of Removing Low-Income Youth from the Disability Rolls,” American Economic Review 106:11 (2016), 3300-3330.

[3] One quarter of families with adult autistics living with them had a household income of less than $25,000/year: Anne Roux, et al., National Autism Indicators Report: Family Perspectives on Services and Supports (Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, May 2021), p. 27.

[4] In general, the disabled are much more likely to experience violence than those without disabilities, and that violence is more likely to be perpetrated by relatives:  Erika Harrell, “Crime Against Persons with Disabilities, 2009-2015 – Statistical Tables,” U.S. Department of Justice Bureau of Justice Statistics Report, July, 2017:  https://bjs.ojp.gov/content/pub/pdf/capd0915st.pdf. 

[5] Kristen Zambo, “Racine Woman Accused of Keeping Autistic Son Locked in Basement,” Journal Times (Racine, Wisconsin), July 10, 2013:  https://journaltimes.com/racine-woman-accused-of-keeping-autistic-son-locked-in-basement/article_2e9f5005-8950-5104-b0d1-13fa6e466066.html.

[6] Alisha Brown, “Trapped in Hell’: Family Accused of Keeping Autistic Woman in Cage, Making Her Eat Mom’s Ashes,” The Daily Beast July 27, 2018:  https://www.thedailybeast.com/trapped-in-hell-family-accused-of-keeping-autistic-woman-in-cage-making-her-eat-moms-ashes; Caroline Grueskin, “Alleged ringleaders plead guilty in abuse of autistic woman; was kept in cage, fed mother’s ashes,” The Advocate (Baton Rouge, Louisiana), May 20, 2019:  https://www.theadvocate.com/baton_rouge/news/communities/livingston_tangipahoa/article_9fabde80-7b35-11e9-9fc5-236d748f322e.html;  “Louisiana couple sentenced for abusing caged autistic woman,” KALB television, October 31, 2019:  https://www.kalb.com/content/news/Louisiana-couple-sentenced-for-abusing-caged-autistic-woman-564189941.html.

[7] FandomConnection, in the “Emotional Abuse?” discussion on the Wrong Planet website, July 30, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=351924.

Autistic Poverty, Part 1

Autism, Employment, Neurodiversity, Poverty, , , ,

As noted in a previous post, I am trying to make my book manuscript shorter (and therefore, readable). So I’m putting some of the material here on this blog. This is the first of several posts on autistic poverty and its impact on where people live.

Autism traits that cause employment issues mean we may end up with less earning power, less earning power means we wind up in places that trigger exactly those issues caused by the autism, which in turn makes us more stressed and even more susceptible to our own challenges and it’s harder to cope with them successfully, which leads to employement issues, which leads to less earning power, which leads to living in the sh***y place . . .[1]

Over the past few years, the financial situation for autistic adults has actually improved slightly.  A few companies are realizing the benefits of “hiring autistic” and are changing their practices accordingly.  It looks as though segregated workshops paying sub-minimum wages may soon be phased out.  Those who can find a place in the integrated workforce are earning more and can live a somewhat better life.  But this minor improvement starts from an abysmal base.  It is still a fact that only about 14% of autistic adults hold regular jobs, and many of these work fewer hours and at lower wages than they would like.  Financial independence, the foundation for personal independence as it is understood in our society, remains elusive even for those who work.  For the unemployed majority of autistic adults, the situation is even worse.  Unless their families are well-off and choose to support them, those without jobs end up living in poverty—often desperate, life-threatening poverty.

Consider the housing situation.  Solid data is hard to find because so many adult autistics fly under the radar.  But a 2017 report from the Drexel University Autism Center found that about 10% of autistic adults lived independently, 49% lived with parents or other relatives, 27% were in group homes, another 8% were in institutions, and the last 5% were in “other” living situations.[2]  These figures resemble those found in other studies, so we can consider them as relatively reliable. [3]

Many autistic people aspire to living somewhere on their own.  Perhaps this is because they wish to maintain their own standards of cleanliness.[4]  Or they may not feel safe living with others because of earlier experiences:

. . . my mindset from an early age is that there was no other way of living but independently, because that represented safety to me, and I made my own way because my trust in people was very much absent as a result of experience.[5]

Others may prefer to have a space where they don’t have to interact with other people:

I have been on my own since I was a teen. I will be honest not having supports resulted in a lot of abuse. With that said, for the last few years or so I have been on my own again (without a roommate or anything), and it is a wonderful experience. I pay all my bills, have my own car, make my own schedule. My parents are both dead, and I have no family for thousands of miles. I am alone and have been for a while now besides my two kids. More and more I appreciate the aloneness and look forward to being an empty nester one day.[6]

Still others see living on their own as a meaningful symbol of independence.

We should bear in mind, though, that some autistics live alone because their families have rejected them:

I was threatened with abandonment even before school age, so I got ready ASAP. I was almost 18 before I got kicked out. I’ve been homeless a few times, but never missed any meals.[7]

I have been on and off homeless since my mom kicked me out when I turned 18 . . . [8]

So “living independently” is not always a matter of choice.

[1] BirdInFlight, in the “Poverty is Harder with Aspergers” discussion on the Wrong Planet website, October 13, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=355217.

[2] Anne Roux, et al., National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood (Philadelphia, PA:  Drexel University Autism Institute, 2017).

[3] Cindy Skinner, et al., “Autistic Disorder: A 20 Year Chronicle,” Journal of Autism and Developmental Disorders 51 (2021), 677-84.

[4] dragonfire42, in the “What’s on your mind right now?” discussion on the AutismForums website, July 29, 2020:  https://www.autismforums.com/threads/whats-on-your-mind-right-now.28399/page-20#post-706937.

[5] B19, in the “Anybody Live Independently?” discussion on the Wrong Planet website, October 26, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=355663.

[6] browneyedgirlslowingdown, in the “Can Autistic Adults Live Independently?” discussion on the Wrong Planet website, June 10, 2021:  https://wrongplanet.net/forums/viewtopic.php?f=23&t=397524&start=0.

[7] Dear_one, in the “Anybody Live Independently?” discussion on the Wrong Planet website, October 28, 2017:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=355663&start=32.

[8] 100skerls, in the “Near the end of my efforts, about to just give up” discussion on the AutismForums website, June 11, 2019:  https://www.autismforums.com/threads/near-the-end-of-my-efforts-about-to-just-give-up.30202/page-2#post-621643.