Photo by: DS Stories
Hello again Islanders, welcome back to the island, where we explore topics
concerning Autism Spectrum Disorder, Neurodivergence and sometimes disability
in general. Once again, Happy Autism Acceptance Month to you all!
April is the month in which Autism is usually at the forefront of everyone’s minds. As such, individuals who are involved with Autism in one way or another are called upon. Autists, parents of autistic children, experts on autism(e.g. Psychologists) are
often asked to share their experiences with or knowledge of Autism.
With that being said, many of these instances tend to be imbalanced. What do I mean? Think about it, on all the talk shows and events you see throughout the month,
who often speaks about it? In my observation, I’ve found it’s mostly the parents,
the experts on autism, or the so called experts on autism. I’ve noticed it’s gotten
better in the United States and the United Kingdom but here in Jamaica, I see very
few people who are actually autistic getting the chance to speak on our own
Disorder.
Why it Happens
Now there are a few reasons I think people tend to gravitate away from the
autistic person.
A Communication Barrier
As we all know, Autism is a spectrum. Meaning, every autistic person has their
own traits and challenges that may differ from others. For example, some may
struggle with eye contact and some may not. Some may have more trouble
focusing than others. Some may struggle with speaking/not speak at all while
some speak fluently. However, when the majority pictures an autistic person,
they think of one that can’t speak (maybe speaking with small words or phrases,
moaning or making strange noises, which could be stimming). For this reason,
mediums like Talk Shows and interviews may think it be best to just speak to parent or a specialist rather than struggle with communicating with the autistic
person.
The Solution To This
First of all, as said before, autism is a spectrum. While some of us may not be able
to speak to you in a way you understand, there are others that can, you just need
to find us. Secondly, just because they don’t communicate like you would does
not mean they can’t communicate. There are plenty of non-verbal autistic people
who utilize mediums such as: typing/writing/audio devices (e.g. Tablets, a pen and
a notebook, text to sound tablets etc.), sign language etc. You just need to
accommodate them when speaking to them. For example, making sure their
device is visible and/or can be heard clearly, hiring a translator etc. It would take more
work, time and money but the way I see it, you want to learn more about the
condition, and gaining knowledge from the experience of those who actually live
with the condition is the best way to do that. It should be worth it, right?
They Fear Being Harmed
Another negative assumption people make about autistic people is that we get
violent for no reason. People have often seen autistic people (mainly on the
internet) doing things like kicking and screaming, flailing their hands all over the
place etc. I have a feeling this deters people from wanting to talk to us for their
own safety. To clear up the misunderstanding, we do NOT just get violent out of
nowhere and for no reason. The violent or “violent” behaviour you see
us display does NOT come out of nowhere. You are most likely witnessing the
autistic person having a meltdown. This is a state we enter if we are in an
environment that is overstimulating for us. When we are in this state, we often
have little to no control of ourselves. Therefore, yes, we may end up harming
people unintentionally. Additionally, it usually takes some time before we reach
the point where we get violent or “violent” so I’d advise to look for warning signs
such as: jerked movements, distressed sounds (e.g. moaning, repeated phrases)
etc. and act accordingly, either offer/get help or give us space.
A Solution To This
Either find someone who you know won’t react this way and/or tailor the
environment to remove anything that may cause this reaction. For example, no
flickering lights or loud music. You can also suggest that someone they trust and
who knows how to handle such a situation stay with them during your
interaction. Again, costly but it should be worth it!
They Don’t Want the Not-So-Sunny Details
Autism comes with its high and low moments. While you may have the increased
passion for your special interest, your increased sympathy and creative spark(a
few I believe I have), you also have sensory issues, social anxiety and general
struggles regarding independence and self care. Don’t get me wrong, you do have
instances in which the media does ask about the low side of autism. It’s just that
they seem to prefer to ask the parents and the experts. I think this happens
because the general public doesn’t seem to want to hear certain
autistic struggles such as: struggles with mental illness or dealing with trauma,
struggles in school/work(that can’t solved by just working harder and believing in
yourself) etc. People often like to imagine disabled people as happy souls that
just never struggle with these things despite their disability and the media may
not want to break that image. Therefore they ask outsiders who are more likely to
misunderstand or sugarcoat the autistic person’s experiences which can be
dehumanizing. Yet, it’s a more positive response from people, so they continue to
do it.
A Solution To This
Just accept that as disabled people, we can have very low points in our
lives. Resulting in experiences that though disheartening to hear about, are
important to listen to in order to help humanize the disabled community.
They Don’t Want Anything Too Unrelatable
An autistic person’s mind and a neurotypical person’s mind operate differently.
Therefore, we experience things differently than neurotypicals. For example, a
certain texture may be more disturbing to us than it would neurotypicals. Let’s
say, in an interview, an autistic person talks about their experience with being distracted by the texture of a sweater they were wearing at school that day. Because of sensory issues, they were unable to focus in their classes and even recall getting scolded because they wouldn’t stop fidgeting which was a response to their discomfort. After the interview is finished and broadcasted, there are a ton of responses like “They’re being so overdramatic!”, “Why would that bother them so much?”, “They’re just spoiled” etc. In contrast, the parent of an autistic person partakes in a similar interview, recalling a time their child was fidgeting and “whining” because of a sweater they had to wear to school. The parent describes how frustrated they felt, prompting responses like “Poor Mom/Dad!” “You’re a good parent, just keep going!”.
As you can see, because neurotypical people don’t understand what it’s like to be
autistic, they tend to gravitate more to experiences of other neurotypical people
with autistic people in their lives. Hence why people prefer to speak to
neurotypicals on the topic.
A Solution To This
So what if they don’t relate or understand? That’s what this is for, isn’t it? If you
want to understand and learn about autism, it would be best for you to learn
from us and our experiences. And if you don’t understand, just listen and ask
questions, it’s that simple!
The bottom line is, yes it may be expensive, difficult and even uncomfortable to
actually find and listen to us but it is still important to do so. It helps you gain a
perspective you may not have had access to before, thus broadening your
understanding of us.
Why Our Voices Are Important
They Give You A Different Perspective
I read an article a while back that had a good analogy for this. Something along
the lines of “When learning about being a firefighter, you’ll get more
valuable/useful information from a firefighter than just a book on firefighting”. When
you actually talk to us about autism, you are more likely to get a sense of how it feels to be autistic. You’ll actually get how we feel/think when we stim or have a meltdown. You’ll gain an understanding of why our special interests are so important to us. You may be able to see how we act and understand why we act that way. That is information you can’t get from an outsider like an expert or a parent.
There Is Less Chance of Misinformation
Unfortunately, sometimes when some parents talk about their autistic children,
they tend to get a lot of things incorrect. For example, some parents don’t quite
understand that their children aren’t being overdramatic when they have food
preferences. Some parents believe autistic meltdowns are the same things as
tantrums and that punishing their children for them is the right thing. Similarly, there are some medical professionals that believe vaccines cause autism or that only males
can be autistic, which has been proven to be false! It becomes a problem when these individuals broadcast this misinformation to a wider audience, leading those watching/listening/reading to believe it and potentially harm the autistic people in their lives! I’m not saying this can’t happen with an autistic person (we can sometimes misinform too), I’m just saying you’re more likely to get correct information from us.
They Help Us Feel Less Alone
People seem to forget that autistic people, read these articles and watch these
videos/podcasts/talk shows as well. How do you think we feel when all we see is
parents talking about what it’s like to raise us or experts just quoting scientific
research and statistics? Those things can be helpful but why can’t we see others
we can relate to? When I was about twelve years old, I came across autistic YouTubers like Paige Layle, The Aspie World and Chloe Hayden and authors like autistic Jennifer O Toole that not only educated me on my disorder, but helped me feel less alone.
Additionally, I was able to understand myself and recognize how I felt (e.g. recognize
when I might be experiencing Sensory Overload) more often. I became more
confident in myself because I was able to gain this information from someone
who actually understood how I felt and what I was going through. Why can’t we
have more of this in Jamaican media?
To conclude, it is important to listen to all voices when learning about the autism
spectrum, but that includes ours too! No matter what it takes, we should be
included when discussing our Disorder! It provides people with a chance to
understand and connect with their autistic family, friends and peers. Especially in
less informed countries!
Whew. With that being said as always, now I want to hear from you, Islanders.
What do you think about this issue? Is it also a problem where you’re from? Did I
miss anything? Feel free to leave it in the comments and if you like what I’m
doing, why not consider subscribing, liking, sharing and following my Instagram.
Alright. That’s it for now. Happy Autism Acceptance Month and have a lovely
day/night.
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