What I wish people understood about Aspergers

Today is World Autism Awareness Day!

If you haven’t heard about it, each year on this day, it is encouraged to take measures to raise awareness about people with autistic spectrum disorders.

Even though it’s observed by United Nations member states, there is importance in raising the awareness all over the world.

Being a mama with a kid on the spectrum, I acknowledge the value of having this observation, and talk about it quite openly to others, regardless of it being an awareness day.

It’s a cause I truly find close to my heart and home, and as my kid is still a minor, I am his voice in this world. A world that ever so often misunderstands him.

I’ve spoken a couple of times about Kid1’s diagnosis, and a couple of weeks back I did a live video with Kaboutjie about The Different Levels of Special Needs and issues that go along with them.

It gave me the opportunity to inform those that might misunderstand special needs, don’t believe the severity of the problems special needs parents face on a daily basis and connect with other parents going through the same struggles.

The platform gave me the opportunity to advocate not just for my son, but for all the parents living with kids on the spectrum.

Kid1 was diagnosed with Aspergers Syndrome in 2017, at the age of five. Ever since, it’s been a twisting and twirling journey; learning, leading and coping. The diagnosis gave us some answers, more answers than we had had before but we had a direction that we could finally move in with a support network and different ways to manage the disorder.

While we’ve had people that have accepted him as he is and make an effort to understand him and his diagnosis, it’s not always the case with everyone. Over the years, we’ve worked through stares, and pointing fingers, sniggers at his inability to communicate properly for his age. We’ve had those that moved away after hearing he is a special need’s child. We’ve had the rude comments and jokes.

I always do my best to explain his diagnosis those who are willing to listen and hear. I pick my battles with some individuals because I know it would be pointless to get anything through to them.

With a label next to his name, he is often underestimated and his diagnosis misunderstood.

Aspergers isn’t used as a official diagnosis anymore, when in 2013 the publication of the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) categorised it as having level one autistic spectrum disorder. It’s also known as high-functioning autism.

In some cases, it is still used by therapists and specialists in certain circumstances.

What I wish people understood about Aspergers #worldautismawarenessday #worldautismday #KindnessCounts
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Here are some of the questions/misconceptions I have been asked over the years. So I thought I’ll gladly share online with a couple of easy-to-understand explanations.

It’s manageable

You can’t outgrow Aspergers.

It’s with you for the rest of your life. What you can do is using coping methods to adapt to situations. You go to therapy where you’re taught different techniques to evaluate situations and social cues, and learn how to behave around others. You are taught to cope with anxiety and meltdowns. As you grow older, you’re able to use these techniques to live a pretty standard life.

It’s a diagnosis that stays with you for the rest of your life, but with the correct therapy and techniques, it’s manageable.

Being anti-social is a choice

It’s not.

As people with Aspergers struggle with social integration, keeping a distance is often their safety net, where they know they won’t be made fun or rejected. They do want to make friends and feel included, but it’s difficult when they don’t know how to.

As people with Aspergers have very specific interests and become absorbed by them, they often only talk about those specific interests and become bored with conversations that don’t involve them. It’s easily perceived as being anti-social too as it’s not considered correct social behaviour.

There’s no specific ‘look‘

I feel my toes squirm each time I hear someone say, “…but he doesn’t look…”

I’ve often looked at Kid1 and wondered what exactly should the ‘look’ look like? Should he be wearing a sign around his neck or should it be scribbled on his forehead?

When you find yourself in this situation, you try to prove to someone else that your child has been diagnosed with a disorder, trying to get the ‘look‘ seen through their eyes. This is where ‘invisible‘ special needs are completely overlooked because there’s nothing physically wrong, therefore you’re either exaggerating the situation and/or your struggles are completely disregarded.

Violent

Some might think that people with Aspergers are violent, but it’s untrue. They shy away from others because of their social difficulties, and don’t create a situation for violence to occur. From personal experience, I’ve never faced a situation where Kid1 intentionally hurt anyone, friends and siblings, and if there were any traces of ‘violence‘, nothing that raised any alarms has surfaced.

It’s normal for kids to throw tantrums at a toddler age because they can’t express their needs and emotions, but it’s nowhere near violent.

They aren’t normal

I’m going to go out on a limb here and ask, “Who is?”

We’re all individuals with different interests and outlooks on life, different thoughts and different quirks we carry with us. What is the definition of normal when there’s no true example to be measured against?

Lack empathy

Cognitive empathy: this is about thought as much as it is about emotion. It’s explained by comprehending on an intellectual level. Such as, you can understand a certain emotion, but it’s not the same as feeling that emotion.
Affective empathy: the ability to share another person’s feelings with them.
Compassionate empathy: the desire to help others even when we don’t always know how to do that.

Some people with Aspergers have plenty of Affective and Compassionate empathy, but struggle with Cognitive empathy.

Over the years, I’ve seen Kid1 develop all these types of empathies and apply them to appropriate situations.

Saying that people with Aspergers lack empathy is a slap in the face, because they do feel, they have emotions, they just sometimes struggle to interpret someone else’s emotions or struggle to explain their own.

It’s not contagious

Aspergers isn’t contagious. It stems from a neurological difference, it’s not a disease that you can pick up if you stand too close to him or let other kids play with him.

My heart has broken in the past for Kid1 where I’ve seen other mamas steer their kids away after hearing he is a special need’s kid.

You’re taking away a branch of social interaction from someone who struggles with social interaction. It’s harmful and can be perceived as rejection by their peers.

Turn away from physical contact

Kid1 isn’t our physically affectionate kid. He likes his space and won’t always stay a couple of seconds longer in a hug. That doesn’t mean that he doesn’t like physical contact. It’s all about the context of physical contact.

He likes giving high-fives, he doesn’t mind being patted on the back, and in the rare yet growing occasions, he’ll want to cuddle with us on the couch. It doesn’t mean he doesn’t like physical contact, it’s about the types of contact that make him feel comfortable, and allowing others into his personal space.

Require routine and structure

It’s something that is good for all people, but for people with Aspergers, it’s a very important role to cope and navigate their day. Any changes in routine can be difficult for them to process and adapt to, which can cause them to feel overwhelmed and emotional.