What Does It Feel like to Live with Autism?

When it comes to talking about Autism Spectrum Disorder, parents of individuals with it mostly ask “what does autism feel like”. Even individuals with it are curious about others’ lives and want to know it.

However, at the basic level, if you have met one person with ASD, you have met one person with ASD. Further to that, you shouldn’t expect more. Until you see something different and strange, you shouldn’t do something different than when you meet normally developed people.

There are many other questions that people living with individuals with autism. For example; parents ask whether their child understands them or not, what autism feels like, what people think autism feels like and the list goes on like that.

“Does My Child Understand Me?”

It is very difficult to have a child who is introvert, offensive, and who does not talk and react in daily life. As families see this situation, they are more concerned with how they can help, and from time to time they are struggling with questions like whether my child understands me or not.

Children with autism have difficulties with empathizing. They cannot understand everything others say because they have a concrete mindset. They cannot establish a cause and effect relationship. Even they understand idiom in concrete terms, not understand as it should be. Events are disconnected in their minds. This can be understood also from the pictures that they make. It is impossible to create a whole with irrelevant pictures.

The parents think that their children do not understand themselves because the child cannot establish eye contact. The child, on the other hand, understands his parents even if it couldn’t be all the conversation. But because of weak speaking skills, the child cannot express what he/ she understands by words or gestures.

There is a huge difference in terms of easier the life between the success in delayed diagnosis and treatment, and the success in early diagnosis and treatment. It should not be expected that a child with autism has serious speech and communication problems or understands what the people say around him/ her. After the treatment, the child is provided with the ability to resolve the negative behaviors step by step and the child gains the ability to communicate with other people, especially with the parents.

The most important problem is the lack of eye contact in social interaction, the inability to use gestures and facial expressions and the lack of language skills. Children with autism are problematic in understanding the feelings, thoughts, and desires of people from their facial expressions or behaviors.

While the negative effects of autism are reduced by a quality treatment, children with autism are given the opportunity to understand and respond to the questions. The behaviors, such as responding to gestures and mimics, responding to questions asked briefly, and holding hands, show that child with autism starts to understand others.

Children with autism who are learning to use their senses of hearing, vision, and sensation with the help of treatment, become more adaptable to daily life. While children with autism who can look at moving or fixed objects for hours cannot look into the eyes of a person, treatment provides eye contact and communication. If the child has started to make eye contact, it means that he/she can understand his parents and others and can distinguish his/ her senses.

“What Does Autism Feel Like?”

Many normally developed people have the same question which is “what does autism feels like?”, however, it is not always easy for people with Autism Spectrum Disorder to answer this question. And, there are some people with autism answer this question with all one’s heart and soul.

  • According to one, it is like play an analog. He feels like everyone around him play according to the scrip, but he has not the script. Everyone looks like to know how to survive him. On the other hand, he says he doesn’t know how to make friends, how to get jobs, how to deal with difficulties in daily life and besides those he does not know how to be human and how to act.
  • According to the girl who does not like the term “high functioning”, it is nonsense to label functioning. Because she feels like people around her do not think of it as something that can hurt her and can cause her struggles and challenges in her daily life.
  • One of them talks about transitions and interruptions. He says he feels physical pain when they happen if he is concentrating on something. Because he does not expect and pulls his attention away from the environment, and when suddenly interrupts with something, it destroys his focus and gives physical pain.

  • Social anxiety is the most common issue for them because they do not concern other people as we do. They never worry about daily routine interactions and proper way conversations. For example, whether they talk too much or little, whether they talk about the wrong subject, whether the topic is proper to say something, whether they discomfort other’s personal zones, whether they look someone’s faces too much or too little, whether they dress suitable to the environment. These are not important for them because they do not understand the difference.
  • A man with autism describes the like as a choreographed dance. He says everyone knows steps automatically but him. He keeps up doing moves that actually he does not want to involve and the people around him see only the acts, not the intentions.
  • A woman with autism describes life as not something experienced. She is living her life in her mind, instead of experiencing it. She is constantly analyzing everything in the environment such as how people walk, how people have a conversation, how the cars move, how the wind happens, how sound propagates through walls. As a result, she gets easily overwhelmed.

  • A person with autism claims that his mind works like the Internet. Everything connects to each other in his mind and when he thinks about something, automatically the other ones come and it keeps going on. Because of that while having a conversation, he gets lost in his world of knowledge. He wants to share all of his knowledge and he does not know where to stop.
  • When the issue comes to concentration, a girl shares her experiences about that. Before self-awareness, she had difficulties while having a conversation because every single finger movement, every current placement of limbs, every gesture got her attention. The pure concentration drives her mad.
  • As we all know people with autism have struggled with language and perception and one of them shares his experience with us. It is extremely difficult for them to talk to people or to write. They cannot choose the proper word to express themselves or simply they do not have any idea about that. Also, It takes much more time to write an essay for them. When they start to talk to write, they often use unusual sentence structure, analogies, and metaphors, even if they do not directly Express their thoughts and feelings that they want to describe. They cannot fin the proper words to express their perception.
  • Before getting diagnosed with ASD, a man says he would tend to fixate on subjects. He wanted to learn everything that possible as a distraction from not being able to fit in with other people in daily routine. According to him, people were not important, however, he would be damned if he did not know what the skipy on with a club tail, the dinosaur with the thick skull plating was, how he can do calculations with complex numbers. So it means that facts are more important than people for him.

  • People with autism have very sensitive sensories, even more, sensitive than normally developed people. A person with autism says that he is bothered by something that is not bothering somebody else. He says that his brain has no filter and he hears all the noise in the environment. For example, while partying and there is 4 conversation around him, it is impossible to concentrate on only one for him. He cannot shut down the background noise also. Moreover, he has difficulties sleeping too. In order to be able to fall asleep, he needs absolute silence. He cannot sleep no matter how exhausted he is if there is no absolute silence because his brain cannot tune it out.
  • Besides the need for absolute silence for sleeping, people with autism have difficulties with sleep because of other reasons. One of them says that she has it because when she lies on the bed, her mind stars to race. If there would be someone else in her home while sleeping, it is impossible to sleep for her. Because her mind races through nonsense thoughts.
  • According to a girl with autism who is attending an art class, instructions are very difficult to follow. She cannot handle ambiguity very well even the instructions are at the basic level for normally developed people. That’s why she needs clarification or needs for the teacher to talk too slowly.

  • As all we know, communication is very hard for people with autism. They claim that they say the sentence that they want to do but people insert words into it. People with autism do not understand the reason behind that. They think that conversation would be like how in their minds, but it wouldn’t. So after some point, they do not care about that and let people hear what they want. In other respect, they think that words are not enough to express feelings, emotion, and thoughts, in short, what happened in their minds.
  • They have very rigid adherence to schedules and habits. A man mentioned his memory with this situation. While he was in elementary school, he just went to school, came back and did homework. He was never thought about breaking the schedule. Since he was in college, his friends wanted to him join them and insisted. But he got overwhelmed and run out of the school. After that, he said he felt weird and did not talk to his friends again.
  • People with autism have mostly narrow interests and they know that these interests do not help them in normal social settings and conversations. One of them talks about his interests in order to clarify this challenge. He likes classical music and he is obsessed with it. It leads to social isolation because many people do not prefer to listen to classical music. He has a profound interest in history but not general. He is obsessed with Chinese history and it leads to social isolation obviously. Because people, in general, do not want to talk about or hear about something Chinese history.

  • Sudden touches made a child with autism very upset, and the child would frequently hit out at people who would touch without asking.
  • Childhood is the most difficult years of people with autism’s life. After adolescence period, if they have enough capacity to understand, they try so hard to fit in. And that times, their personalities would change into someone else’s personalities such as someone popular, someone famous or someone loved. This situation happens without conscious effort. Their minds program itself according to what they see around them in order to be loved and in order to be accepted.
  • They resist changing their clothes. They want to wear the same clothes every day. That’s why they have lots of the same t-shirts, same pants, and the same shoes. And also they should be the same colors.

  • Routines are everything for people with autism. One of them says that he ends up noticing routines and noticing how he feels when he doesn’t follow certain things. For instance, he is going to the gym every day but if something happens and he cannot go to the gym at that day. He would be very upset and his anxiety increase just because of that. He says that in his mind he tries to imagine himself at the gym in order to cope with this situation or tries to think what would be happened if he doesn’t go. During this situation, he cannot have a conversation with others, especially if it is a random chit chat. If he cannot manage his drives, even if it is not the same time he goes, he still goes to the gym during this day.

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