Types of Stigma: Structural Stigma

Type 6: Structural Stigma

Structural stigma is the existence of institutional policies or other societal structures that result in decreased opportunities for autistic people.

"Institutional policies" is kind of a mouthful, so I'll start by pointing out that it's not just referring to mental institutions or whatever we're calling the modern day insane asylums these days.  It's also not just talking about sheltered workshops or group homes.

An institution, in the broadest sense, is stuff like churches, schools, hospitals, governments, and other organizations.  An institution is an organization founded around a purpose, whether that purpose is religious, social, educational, or some other reason.  Institutions have rules, bylaws, norms, and unspoken expectations.

There are a lot of kinds of this stigma in existence, but the one I hear about from parents most involves Medicaid.  You see, support services for autistic people cost money.  A lot of money.  Since most parents aren't independently wealthy, they cannot afford to pay hundreds of thousands of dollars per year for the services their kids need to thrive.  What's a loving parent to do?  Certainly not watch their kid suffer for lack of help, or burn themselves out trying to support the family plus act as their kid's only (untrained and uneducated) support full time.

Instead, the typical answer, at least in my state, is to apply for Medicaid.  The government has money set aside to pay for support services in situations like this.  It's less and less each year, and because of the US's eternal suspicion of the poor (because being poor is SO FUN (/sarcasm)), you have to jump through about eleventy billion hoops to acquire that support, demonstrating in excruiciating detail that yes, your kid really does need this help.  It's a process that can take years, and multiple rejections even though the person's need is real.

Unfortunately, depending on what kind of Medicaid you receive, there may be income limitations.  Literally, your family or the autistic person themself might make "too much money" to qualify.  Let me remind you support services can cost hundreds of thousands per year.  The amount you can't exceed per year to receive full support, if you're a single working adult? $18,000 a year.  So you could be making $20k a year, barely have enough to make ends meet, and yet be expected to pay multiple times your yearly income in services.  Apparently, this is "fair" by the government standards.

What usually happens here is that families and individuals on the spectrum need those services, and need to be on Medicaid to afford them.  They therefore quit their jobs or take massively reduced hours in order to qualify.  The types of jobs that make the cut for these restrictions are usually high stress, unfufilling jobs without hope for advancement or further training.  Even if advancement is available, the autistic person or the family may need to turn down those opportunities in order to continue to qualify for Medicaid.

Thus, one reason for the massive amounts of unemployment and underemployment in the autistic population.

Another easy example is the educational system.  It varies widely on the school system, but in many cases, "special needs" children are segregated 100% of the time from their typically developing peers.  Sometimes this is done after assessing the child's skills and abilities, but sometimes merely having a diagnosis is enough to mandate immediate separation from your peers.  Sometimes entirely separate school systems are involved.  Often entirely different curriculums are involved.

I'm not going to pretend the neurotypical school system is flawless and that it's appropriate for every child to learn everything taught in a typical school system.  The school system actually has serious issues.  However, inclusion is mandatory.  Curriculums that challenge and spur the growth and development of each child, are mandatory.  These things are not happening in most school districts, and as a result, autistic people do not learn as well or as much as they're capable of doing.

Effectively, school policies are stunting our educational opportunities.

Due to this lack, autistic people may have limited higher education options, or even none at all.  We might be denied a chance at trade schools, at colleges, or even at internships or apprenticeships due to our lack of good grades, lack of diploma or GED, and use of alternative curriculums.  You'll note this phenomenon, too, ties right back into poor or no employment options.

I've named two major forms of structural stigma here.  There are many more, from churches excommunicating autistic people or refusing to allow them into Sunday school to hiring policies that don't allow for neurodiversity overall.