A glimpse into what it is like to be on the Autism Spectrum

Prof. Stephen M Shore, an avid researcher on the Autism Spectrum, once said,

“If you’ve met one individual with Autism, you’ve met one individual with Autism”.

This statement is testament to the fact that every individual diagnosed within the Autism Spectrum exhibits different characteristics.

People diagnosed with Autism Spectrum Disorder (ASD) vary in the kind and degree of difficulties they experience in displaying social interaction, verbal and nonverbal communication, and repetitive behaviors.

[Since the publication of the DSM-5 diagnostic manual in May 2013, all autism disorders are now merged under the overarching diagnosis of ASD and will be referred to accordingly in this article]

Never judge a person before you have walked a mile in their shoes.

One can diagnose and analyze ASD but can never understand how it feels to be on the Autism spectrum, if they have never experienced it firsthand or through a loved one. Understanding what it is like to be a person with ASD requires one to view an everyday situation from a different perspective. To really understand why they interact with the environment around them in the unique way that they do, we need to learn from their own experiences. We have collated a list of real-life experiences and thoughts of those with ASD to give you a real and profound insight into ASD and all it entails.

Social Life

What is being social? Well, reacting to people by understanding them and reciprocating to it with logic and expression, defines social behavior. Infants start reacting to social impulses when they are around 2 to 3 months of age. For those with ASD, this social response is delayed which leads to difficulties in delivering the give-and-take routine of everyday human interactions. Individuals diagnosed with an ASD typically do not like engaging most social activities we typically engage in.

Here are a few facets of how people with ASD experience their social life on a daily basis:

Note: The observations listed below are that of real individuals diagnosed with ASD.

  • Their interests are different from others. Interests like concerts or parties are hardly their thing. They may instead choose to spend their time on a thought provoking science project.

  • It’s not easy to receive all conversations. Their slower reception of things sometimes makes it hard for them to understand what others are talking about. This, in turn, may make them retreat into themselves and find solace in being alone.

  • They may not like engaging on social media. While social networking sites make it easier for them to be in touch with people they know, the constant communication inherent in social media makes them restless. And eventually, they end up disliking it.

  • They want to express their views on a specific aspect, but they will not. They may often practice expressing their choices in all aspects of food, music or a subject. But in reality, there is a thought marathon going on in their brain, and they actually won’t utter a single word to express their feelings.

  • Their love for pets is never ending. People with ASD are typically found to have inexplicable love for pets. Spending time with animals gives them immense pleasure and joy.

Sensory Overload

One prominent characteristic of ASD is TMI - Too Much Information. People with ASD have a tendency to notice and attend to every detail of their vision or any other sense. If all of these parts create a cluster of vision or sound, it can often lead to an emotional breakdown of the person. They require immediate care in the aftermath of such situations to settle down. It is typical for them to feel extremely overwhelmed and anxious at crowded places, such as a mall. Sensory overload, accompanying anxiety and confusion are key aspects of ASD.

A glimpse into what sensory overload feels like:

  • Attending to every tiniest change of their vision. This could happen to most people diagnosed with ASD. Sudden change in surroundings grab their attention, initiating panic in them. If it is followed by too many changes in a short span, it could confuse them and cause them to question the reality around them.

  • Reacting to sounds. Ordinary sounds such as a barking dog, footsteps, opening and closing of doors or people talking, can confuse them. If all these noises are brought in together, it can cause acute panic and make them want to run away from the sounds.

  • Dealing with unfamiliarity. Strangers or unfamiliar new places give them anxiety causing frustration to build inside. They are suspicious of unknown people and wonder why they smile at them.

  • Dealing with happiness. They completely forget about time and place if they are enjoying something. When they love something, they are incredibly excited and happy about it.

Communicative Behavior

This is another key aspect of the life of a person with an ASD. Delay in development of verbal and nonverbal abilities leads to stress. A person’s ability to communicate will depend upon his or her intellectual and social development. Some people diagnosed with ASD, may be unable to speak. Others may have a rich vocabulary and be able to talk about specific subjects in great detail. The majority, however, have difficulty using language effectively for social communication.

Here’s how communication behavior of an individual with ASD differs

  • They may not prefer to initiate a conversation. And that’s because rejection is devastating to them. They always hope that the other person will initiate the talk, so they can respond.

  • They prefer to listen than speak. They do have their views, but prefer to stay quiet. Ending the conversation is their favorite part because they don’t need to talk anymore.

  • Babbling words. This is rare, but when they are panicked, they find themselves shouting and screaming unknown words. This helps them release stress. A similar pattern also occurs when they are really excited.

  • Understanding Body Language. They find it difficult to understand body language or interpret its meaning.

  • Understanding the tone of the message. It’s tough to comprehend any satirical statements or rhetorical sentences. People with ASD typically take the literal meaning of statements. Sometimes their facial movements and expressions do not match their speech.

Other behavioral characteristics

  • Individuals with an ASD do not appreciate being treated differently, even if you may think of it as a polite gesture.

  • Another common characteristic of people diagnosed with ASD is that they may not always remember when or where a particular situation has occurred.

  • On the positive side, individuals with ASD are typically gifted with impressive intellectual abilities and logical thinking skills.

While these are experiences gathered from real individuals with ASD, it is important to note that not every person will have the same experience. ASD manifests very differently from one individual to the next.

What is even more important to understand is that, while there are differences in the behavioral aspects of a neurotypical person and an individual with an ASD, this is what makes them unique.

We hope this knowledge will lead to new strategies that help individuals with ASD. Strategies that can harness their remarkable ability to help them succeed in school, jobs, and in their social interactions. Do you know anyone that has been diagnosed with ASD? Share your experiences with us.

#speechtherapy #ASD #autismspectrumdisorder #UAEAutism #Dubai #ProfStephenMShore #AutismSpectrum

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