Autism Spectrum Disorder is often mentioned in the newspapers or on television but the truth is that besides remembering Dustin Hoffman's performance in the movie "Rain Man" as an autistic savant (which only represents 5% of the people living with Autism), they have no clue about what is Autism. I am the mother of two young children living with Autism and believe me, I had a lot of explaining to do to family and friends through the years. Here are some of the things that I tell people, in order to explain my children's reactions, especially my son's as he is also non-verbal.
- There are similarities between Autism and a stroke. When someone has a stroke, the part of their brain that was damaged by the stroke is now unable to function properly, if at all. Often, skills such as speech, fine and gross motor skills have either been greatly affected or simply disappeared altogether. Either way, the person has to train another part of the brain to do the same job. Autism is similar in the way that the brain functions differently as connections in the brain are wired differently. Although they have no brain damage, the parts of the brain that would usually be in charge of speech or fine and gross motor skills are focused on something else, which means that other parts of the brain have to be trained to take on these responsibilities.
- Autism does not mean being mentally challenged. Although being mentally challenged can affect someone with Autism, it doesn't come with it. You see, although some challenges may affect mental skills and may even occur more frequently in people living with Autism, it is not a symptom of Autism Spectrum Disorder (ASD). In fact, people living with Autism can be quite knowledgeable in specific areas. In my son's case, it is technology.
- Autism is a communication disorder! My son is non-verbal. In his case, when people do not understand him and his needs, frustration sets in, resulting in a meltdown. He is not acting up like some people assume it to be the case. Imagine, you are a tourist visiting China. You don't know the language and you desperately need to go to the washroom. Being unable to find someone that either speaks your language or finally figures out what you are saying, frustration sets in. After an hour or two or even earlier, you lose your temper or lose control of your bladder. Were you acting up? Of course not! Now, imagine being in this situation every single day of your life.
- Autism is different for everyone involved. Autism is a disorder that has a spectrum, which means that symptoms, their severity and their displays are different for every person living with Autism. In my children's cases, my daughter is verbal and has light Autism, which means that she is high functioning, compared to most people living with Autism. Her future looks brighter as well. My son is non-verbal, which makes him affected more severely by Autism. If you put him on the spectrum, he was diagnosed to be located on the moderate to severe end of it, according to his high needs.
- Autism is not a communicable disease! First let's make one thing clear: Autism is not a disease but a disorder. Second, it is not communicable to others like Chicken Pox. Third, unless it has a circumstantial cause such as vaccination, it is most likely to be genetic. There is nothing worse for a mother than to see other parents take their children away from your child's surroundings because they think that if they play with your child, they will get Autism too. People may think that their reactions or comments do not hurt an autistic child because they believe that autistic children do not understand their reaction, which couldn't be further from the truth. In fact, I have seen both my children's feelings being hurt by such comments and reactions.
- Dealing with hypersensitive issues, every minute of every single day. Most people are sensitive to certain tastes, noises or touching certain things. Do you remember having to wear the nice wool sweater that your mother knitted for you, despite the fact that it itched so much, driving you crazy? Well, in my children's cases, certain issues cause excruciating pain or distressing situations. My daughter's ears are hypersensitive to noise, which means that refrigerators and freezers' noises actually hurt her ears, causing an ear ache. The size of certain food and their texture cause her to choke on them. In my son's case, labels and seams drive him up the wall because they hurt him. The paper napkins that are in his school's bathrooms are so rough on his hands that they are scraped, cause severe rashes and make them bleed so we have to send a nice fluffy hand towel to school. In both cases, cutting their hair and trimming their nails are a sensory nightmare. Are there some meltdowns? Of course! Unfortunately, until I explain it to them, people tend to misjudge my children's reactions.
- Autism and communication challenges go hand in hand! While communication is an easy skill for most people, when someone lives with Autism, it is like facing a puzzle that contains 1000 pieces. That person doesn't know how to begin a conversation and interact appropriately with others. This is why play and interactions tend to be either parallel repetitious or done through imitation.
- Most easy things for you are challenging for people with Autism. Wouldn't you feel frustrated if you had to do a task that was as easy as 1-2-3 for everyone but you? Well, both my children have to do 10 times the work that other children do easily such as writing, throwing and catching a ball, riding a bicycle, jumping, etc. Do you understand how frustrating it can be, especially if people are making comments on top of it?
As you can see, these are only some of the issues that, when explained, help people to have a better understanding of what Autism is and how challenging it can be when your life is affected by it. So, the next time you see a child displaying some frustration in public, please don't judge as you never know what this child may be going through...it may be Autism!