BADD 2017: The Stigma Is the Problem, Not the Label

Foreword: This was a post I had intended to write a year ago, but figured it would make good material for BADD(Blogging Against Disablism Day) the following year. This post covers an issue I have personal experience dealing with, and it intersects with my previous post regarding identity-first language in many ways, given that many discourage it simply because it is supposedly a “label”. I know of parents who do not disclose their child’s disability to them out of fear that they label will “hold them back”. I intend to help dismantle this belief by demonstrating that stigma is to blame.

I include a lot of links here, mostly to works of other Autistic/disabled people. Most of these links are there for people who are new to certain terms, such as “inspiration porn”, “neurodivergence”, or “Autistic culture”. Others are specific examples of how the ‘Autistic’ label has empowered and helped people, and how the lack of such a label has done more harm than good. 

Disclaimer: While the focus of this post is on autism, it can be applies to other neurominorities and disabilities too. 

“The biggest disability is a bad attitude.”

“Labels are for cans, not people.”

“Don’t call yourself Autistic/Disabled/etc.”

How many times have you heard quotes like these, which reek of inspiration porn?

When parents have newly diagnosed Autistic children, they tend to react in various ways. Some good, others bad. Some parents, however, decide to hide the diagnosis from the child, specifically preventing them from learning of it as they grow up.

They justify this by stating that they have an aversion to “labels”. They see autism as a label that will hold their child back. They assume that if their child knows they’re Autistic, it will prevent them from doing their best, and give them a self-defeatist attitude. They believe that if their child never learns that they are Autistic, they will be able to do whatever they want in life without being held back.

It is likely that parents who take this approach with their kids, like many non-Autistic parents of Autistic children, are completely unaware of Autistic culture or the neurodiversity paradigm.

At face value, this seems noble. However, in withholding something that is an essential part of who they are, these parents are doing more harm than good. I would go so far as to call it abusive. Aside from the fact that people have a right to know such information about themselves, their child may require support and accommodations they will likely never get. (After all, if the child is receiving accommodations, they will eventually find out why.) In an attempt to give their child a better life, this will only make it all the more difficult.

Additionally, it is a huge myth that we suffer or do “worse” when we know we’re Autistic. Autistic people actually suffer far more when we do not know – many undiagnosed Autistics are endlessly bullied, abused, and often acquire psychiatric disabilities as a response to this trauma, from depression and anxiety to PTSD. In addition, Autistic people, including myself, as we grow older, often become painfully aware that we are “different”. We see things differently. We feel things more intensely. We develop certain interests and focus on them, which others might find odd, and mock us for. We move in ways that seem unusual to non-autistic people, or have sensory needs that differ – such as being extra sensitive to bright lights and loud sounds, or liking certain sensations so much we actively seek them. People take notice of these things, and we are often singled out for it. This often leads us to feel isolated, or othered(this link leads to a video; for the transcript click here).

Sadly, the world as we know it is still not very friendly to Autistic people. It is often very disabling to us, and without being accepted and accommodated, unidentified Autistic individuals can tremendously suffer. Some people need accommodations in order to succeed, and this requires them to be identified as Autistic. It does not connotate that they are broken, ill, or that they need “fixing”, but it allows them to receive  the support and accommodations that they need. There is nothing shameful about being disabled – disabled individuals are still worthy as they are, with worthy lives, and can still accomplish great things, especially when appropriately accommodated. The disability is not the problem – accessibility is.

In addition, labels are not inherently bad. They serve many purposes and are inevitable parts of our society. They work as tools, or as identifiers. We may all be human beings, but humans, like all species, are diverse, and this diversity is our strength. ‘Autistic’ as a label is another aspect of my identity, just like my ethnicity and culture.

Labels can be a source of pride. They can be empowering. They were empowering during the women’s rights movement, the civil rights movement, the LGBT rights movement, and they will be empowering during the neurodiversity movement.

There are countless examples of Autistic individuals embracing the label and being empowered by it. Kirsten Lindsmith describes it here, fellow Autistic activist and founder of the Ask an Autistic YouTube series Amythest Schaber(Neurowonderful), who was linked above, describes their experience here.

People often justify their aversion to ‘Autistic’ as an identification label because of the negative connotations associated with it – but this is hardly the fault of autism. Rather, it is because of the connotations themselves – the stigma – that is at fault. Fight to end the stigma, and people will be able to proudly identify as Autistic without reservation, and easily get the accommodations they require.

I knew I was Autistic since I was a young child – and was fortunate to receive accommodations in school (though I still had some issues with accessibility and unfair treatment). Not having thought of it much, there were times when people would exclude, disrespect, or bully me due because of my neurodivergence, whether they were aware I’m Autistic or not. Ultimately, this resulted in a period I spent in self-loathing, hating who I was and wishing I was born “normal”. One could say that I was held back by my label, but this would be misrepresentative. I was held back because I was taught that my ‘label’ was wrong, that my disability was something medically and morally broken inside me, rather than limitations imposed by a disabling society. I was held back by stigma, and by the lack of understanding and acceptance, not the label.

Of course there are some labels which are undoubtedly bad and shouldn’t be used – functioning labels, for one, which are inaccurate and harm Autistic people. Or labeling autism as an illness, which results in people trying to “fix” Autistic people rather than accommodating them, and results in Autistic people becoming self-loathing. However, this does not mean that all labels are bad. You can embrace and utilize good or neutral labels while discarding bad or harmful ones. It is just important to remember to differentiate between truly bad labels, and situations where the stigma rather than the label is the real issue.

To any non-Autistic parents of Autistic children reading this, always let your kids know they’re Autistic. It is part of who they are, and they deserve to know anything and everything about them. However, in doing so, you don’t have to let them soak up negative ideas either. Parents who fear the ‘autism label’ often buy into the tragedy narrative so common to autism. You don’t have to. Reject the idea that your child’s autism is a disease or tragedy. Accept it and celebrate it as something that makes them unique, and is part of who they are. Support them, and accommodate their needs. Encourage them to be themselves, and to be empowered. Embrace the neurodiversity paradigm, and encourage others to as well, and in doing so you will help create a society that is both accessible and accepting to people of all brains and minds, Autistic or otherwise.

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Author: autistinquisitor

An autistic advocate who is trying to raise not autism awareness, but autism acceptance. An advocate for the neurodiversity paradigm.

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