Ableism and Invisibility

I will be honest. My frustration is growing. The amount of mistreatment, ableism, and judgment many around the world, including myself, have been facing is growing. There is a widespread combination of factors that seem to be encouraging this. The first is ableism, which, in relation to Autism, is discrimination against Autistic individuals, favoring those who are not Autistic as “normal” and “superior” to those who are. This attitude devalues those who are autistic and limits their potential. Examples of ableism in autism are assigning negative stereotypes to all autistic individuals, denying an autistic person’s abilities because it is assumed they cannot do something due to not being “normal”, parents mourning about how they are being held back, disabled, or otherwise severely negatively impacted by not having a “normal” child. It is anything that sends the message that being Autistic is not “okay” or not “good enough”. Talking about the negative impact someone’s care has on society is ableism because it says that the person has no value of their own and is only a cost. Doing things to Autistic children that are “not okay” for “normal” children is an example of ableism. If you would never imagine saying or doing something for or to a “normal” child, it should not be done to an autistic child either. Using “Autistic” as a slur or a joke about someone who is socially awkward or behaving in what you determine to be an “Autistic” way is ableism. Defending it by saying things like “it’s not a big deal”, “I’ve always talked that way – it’s too hard to change” are defending ableism. Some personal ones I’ve dealt with are being told I am not struggling because I do not ‘look’ autistic. Being instructed that my child’s meltdown that was caused in the grocery store by the rude behavior of someone else is my fault because I’m a bad parent. Being told that, because I’m not physically disabled, I don’t “deserve” any help. Having parents tell their kids not to be friends with mine because [fill in the blank with any negative autism stereotype]. Being told that if I cared, I could “fix” or “cure” myself and my children. Being told I cannot possibly raise kids if I’m autistic. My son being continually bullied by staff at his school because they insist he “really needs” their “help” (he does not). My daughter repeatedly having to be tested by the school for Autism because girls “don’t have autism”. Losing a job after they find out I’m autistic because I am not “capable” of doing the job (I had done it successfully, including winning awards, for several years. All that changed was they found out). I could go on for a long time on this but here’s a simple way to tell. Replace whatever is being said or done with gender or race and see if it is acceptable. For instance, if a business said they don’t want to hire someone who is female because they are too much trouble and can’t work as well as someone who isn’t female, would this be acceptable? Of course not! However, this is commonly stated about autistic people and everyone seems fine with that.

The second issue is, rather than truly fostering inclusion, most are looking for inclusion so long as we are invisible. They will tout all the work they support in their schools, workplaces, and communities to foster inclusion of Autistic individuals. However, as soon as they have to personally interact with someone who is autistic, they flip out. Some examples here are not wanting the autistic woman on your team at work, not wanting your child paired with the autistic boy on a group project, encouraging your teen girl to find a “normal” boyfriend when you find out her current one is autistic, complaining about the thought of autistic kids being in the same classroom with your child because your child will learn less and be distracted by having someone “different” in their room. Many of these statements will begin with a phrase like “I’m all for inclusion but…”. You are all for inclusion as long as you don’t have to see us, as long as we remain invisible to you.

These two issues are a huge reason why so many people who are autistic give up trying to be a part of society. So many give up trying to keep a job because, despite being more than capable, and, in some instances, even more capable than most people, no one ever sees their talents and automatically assumes they can’t rather than they can. This is why so many autistic kids seclude themselves more and more as they get older because it is assumed they cannot have normal relationships and friendships. It is assumed they don’t want friends, they always want to be alone, etc. This is why so many stop trying to join afterschool activities or go along with work outings. I cannot tell you the number of times people (well meaning at times) don’t even invite me along on outings because they assume for me that I cannot handle it. Rather, I hear about get togethers, parties, and outings as everyone else is chatting about how much fun it was. Rather than allow me to decide what I can and cannot handle, it is assumed I cannot handle it. Additionally, many times autistic people are not asked because there is a thought it will be too much trouble or that they will act in a strange way and embarrass everyone. This is just furthering the stereotype that autistic people don’t know how to act in society.

Is it any wonder autistic people report staggeringly high rates of loneliness and isolation? Is it any wonder autistic people suffer higher levels of depression than any other group? Is it really surprising that many eventually give up and go on disability because, no matter what education, degree, or training they have, they will never be thought of as capable? Is it really shocking that the suicide rate is astronomically high?

Think of it this way instead: people would rather risk killing their child than having one that is autistic. Anti-vaccine people who believe that vaccines can cause autism would much rather have a dead child than an autistic one.

Think of this: people use fad diets, dangerous and unproven treatments, and degrading therapies to try to remove their child’s autism. Many of these end up in lifelong physical or psychological harm, degrade and dehumanize their child, or even cause death. They are fine with this on the off chance it will “fix” their child.

The only messages this sends to those of us who are autistic is that we will never be good enough to be accepted, we will never be loved unconditionally because we are not “fixable”, we will never be included because it’s too risky or too much trouble, and we will never be considered capable or skilled because we aren’t “normal”.

As you interact with autistic people, be they your children, kids in the neighborhood, someone at your workplace, or a random person in the store, before you judge, before you assume, stop and think. Would what you are saying, doing, or thinking be acceptable if you were saying, doing or thinking it about one of your traits, such as your gender or race? Would you be okay with someone judging you with those same types of thoughts? I guarantee the answer is no.

Remember this: We are NOT a broken version of you. We are our own unique version of humanity and have just as much of a right to be included and respect as you do.

It Doesn’t Vanish at 18

As I’ve been working on research to support activities being done at work, I am noting an alarming trend. Most supports, groups, and initiatives are only focusing on Autistic children. Although it is necessary to support children as they grow on their path to adulthood, there is a terrifying precipice at the end of the road. Once someone becomes an Autistic adult, they are left under-supported and dangling without a safety net. This appears to be due to the fact that Autistic adults are not the ones featured in fundraising or educational materials about Autism. Rather, people tend towards the images of young children, lost in their own worlds or screaming and crying in meltdown. This is a damaging and dangerous trend.

Autism does not simply vanish at adulthood. The belief that Autistic adults do not need similar supports after the age of 18 or 21 is not only false, it can have devastating consequences. Consider the number of Autistic individuals who suffer from chronic mental illnesses such as anxiety or depression. 85% of individuals with Autism have been diagnosed with at least 1 anxiety disorder. In addition, people with Autism are 5-10 times more likely to die by suicide than any other group in the world. In fact, it is one of the leading causes of death in Autistic adults and is a large contributor to why the average life expectancy for an Autistic person is only 55 years.

Looking at these numbers and the fact that the numbers skyrocket after the age of 18, the fact that the supports do not exist for Autistic adults becomes a primary suspect. The sensory needs of the child do not disappear once they reach adulthood. They will not suddenly be able to “handle” loud noises or bright light, or no longer need special clothing to alleviate the severe pain caused by their sensory issues. The social skill issues will not vanish, making them easily able to navigate the adult world of dating, marriage, and career. The executive functioning deficits that may be present are not suddenly solved once the 21st birthday has occurred. Rather, Autistic people are basically thrown out into the streets on their own, in a world that believes there is “nothing wrong” with them and they should be able to just “deal” with it and act like everyone else.

I hypothesize that the consequences of the lack of education combined with the lack of supports and these types of thinking are why the unemployment rate is so high even in qualified individuals, the mental illness rate is so high, the homelessness issues are so prevalent, and the abuse and divorce rates are higher than other groups. Someone who is Autistic would excel at their career if they could get past the social requirements in the interview process and get the sensory and social supports at work. They would be able to keep their depression and anxiety under control if there were supports that took both their mental illnesses and their Autism into consideration, instead of attempting to separate them. They could maintain adequate housing if they could find and keep a job that supported them. They could navigate the tricky world of relationships and avoid being taken advantage of and abused if there were places they could turn where they were treated with respect and consideration.

Instead, as it’s always been, it continues that a few lucky individuals (like myself) find that diamond, that gem of a workplace that gives them what they need to excel. The majority are left to scramble, claw, and fight to get even the smallest bit of consideration. Everywhere they are told they are broken, wrong, at fault. This becomes internalized and unbearable. It is no wonder so many choose to die once and for all rather than to die a bit every day under this pain.

We need to do something to change the tide. We need to recognize that Autistic adults exist, and MUST exist because the Autistic children grow up! We need to see that Autism is a true spectrum of abilities and disabilities and that what worked for one may be horrible for another. We need to put supports in place so that it is an EQUAL playing field for all. It is not that we want better than others. We just want the same chances everyone without Autism get. We must do better! 1 in 55 people is Autistic. I am. My spouse is. All of my children are. My best friends are. Many of my colleagues are. None of us fit the “mold” of the Autistic person. All of us deserve a chance to thrive.