Autism Spectrum Disorder is not only a diagnosis, but it also a way of life. Both my children are living with Autism. I say “living” because every second of their lives are affected by this disorder. Everything they do, say or the way they think is connected to Autism. Their abilities, their dreams and their skills are also deeply connected to ASD (Autism Spectrum Disorder).
Until my son was diagnosed, I am embarrassed to say that the only thing that I thought I knew about this social disorder beside its name, came from the movie: “Rain Man”. Boy, was I ever wrong? Over the last 7 years, I have learned a lot about Autism Spectrum Disorder, most of it by experiencing it first hand.
I met a lot of people through the years, including my husband’s family and mine, that know little if anything at all about Autism. I also realized that most of people’s knowledge is based on the information provided by Hollywood, through the movies such as: “Rain Man”.
Misconceptions about Autism are the reason behind this lens. I intend to address some of the Hollywood facts and turn them into “real” facts instead of entertaining fiction or partial information.
Misconception #1: The movie “Rain Man” It may be based on reality but it does not represent the average autistic person!
The movie “Rain Man” was very entertaining and also based on a man diagnosed as an autistic savant. Unfortunately, it was not indicated anywhere during the movie that the autistic “savants” represent approximately 5% of the people diagnosed with Autism Spectrum Disorder. It certainly does not represent most people living with this social disorder.
Autism is located on a spectrum, which means that not everyone diagnosed with this disorder has the same abilities, challenges and skills. The spectrum goes from light Autism to severe Autism depending on what the person can do or not. Some experts even consider Asperger’s Syndrome to be at the top of the spectrum while others say they do not belong on the spectrum. Autistic “savants” would be right at the top.
Both my children have Autism, and they are as different as can be. My daughter has light ASD, is verbal and her photographic memory helps her learn how to read and write. On the other hand, my son is located on the lowest point of the spectrum as he was diagnosed with severe Autism. He is non-verbal, has feeding and hypersensitive issues, but he is a little genius with technology. He even provides some challenges to the computer “experts” of the school.
In the movie, Dustin Hoffman was portraying an autistic “savant” who could count anything at high speed. Well, I have news for you! People with Autism usually have a favorite topic or a special ability they focus on. For some people, it could look like an obsession when in fact, it is something that interest them so much, they become very good at it.
As a teacher, I had a student that would talk either about animals or video games. He could come up with an unlimited amount of facts on these topics. He was unable to do a lot of things, but he could surpass just about anyone on these topics.
While “Rain Man” introduced some facts about Autism such as the importance of having a routine, having a literal comprehension of language and text or simply by showing some hypersensitive issues, you cannot consider this movie as the Bible on Autism. Remember, Hollywood’s prime goal is to entertain, not to provide the type of information you would learn from documentaries.
Misconception #2: Autism doesn’t exist! Behavior and challenges are the result of bad parenting!
Really? When I heard that a radio DJ made this statement on the air, I couldn’t believe it! I thought, either he is blinded by a closed mind, is jealous of the “services” provided to the families living with Autism, or he doesn’t know anything about Autism and just wanted to have high ratings by creating havoc on the air. I was shocked to learn that he was not fired or disciplined in ANY way! I guess, the high ratings were the answer to the lack of action.
Well, here are some FACTS about Autism Spectrum Disorder. Once you read this, maybe you can educate poor souls like him who do not believe in Autism. First of all, Autism is not mainly based on behavior and communication skills. There is a list of symptoms such as: hypersensitive issues, the importance of a routine, safety issues, lack or limited speech, inappropriate play with toys, parallel play, lack of eye contact, rejecting displays of affection, etc.
This disorder is also physical. You see, every part of the brain has a specific job to do. In the case of someone who is autistic, some parts of the brain are asked to perform different tasks as it is “wired” differently. The connections between the messages from the brain and the parts of the brain are “wired” differently. The part responsible for speech may be asked to analyze sounds rather than language. While some areas of the brain can be trained to do something else. It is similar to training the brain of someone who had a stroke, not all areas are able to perform the given tasks well if at all.
As you can see, behavior and challenges linked to Autism Spectrum Disorder have NOTHING to do with bad parenting. To the people that do not believe in Autism, I strongly recommend that you do some research. Develop your awareness about ASD and educate yourself with facts rather than unfounded opinions!
Misconception #3: Families living with Autism have it easy due to… …some “special advantages”!
Living with Autism is not easy, especially for the people diagnosed with this disorder. The challenges they face daily may require some specialized services, financial help or some materials provided by the government. A child that is unable to control elimination will require the use of diapers. While most people with children will not have to pay the expenses linked to diapers passed the age of 2 years old, some families will have to pay until 3 years of age. It is the age limit when the government provides diapers, if it applies in their area. Diapers and wipes are not cheap and when you have to buy them, something else has to give as you can’t afford it!
In our situation, our children both needed diapers, until recently for my daughter who is now 7 years old. My son still needs them at night. He is 9 years old. That means that if a family has no help from the government, they have to pay for diapers, and it is quite expensive! In our case, we were only required to pay for them until they turned 3 years old. That is how it works in our area, not necessarily in yours.
The government in our area also provides some financial assistance regarding income tax and monthly benefits but there is a good reason for that! When you have a child with Autism, it can be quite expensive to meet their special needs but having two can financially hurt your budget. You see, in our situation, we are a single income family. Our son has severe feeding issues. He will only eat certain foods, in certain wrappers, with specific logos and toppings. He will not eat otherwise. That means that we must buy a lot of take-out food. And to top it off, something may change his mind at the last minute and being non-verbal doesn’t help to find out the causes for the change of heart. All we know is that we must buy him something else. After all, as parents, one of our main responsibilities is to ensure his health by feeding him. Believe me, it is not an easy task, but it is an expensive one!
Once my children were diagnosed with Autism, their special needs required special services such as: Speech Therapy, Occupational Therapy, Physiotherapy, etc. Of course, we were put on a waiting list. As far as Speech Therapy was concerned, it was 2 1/2 years long. As you may know, the most progress is done with autistic children when early intervention is used. In our case, it meant privately hiring a Speech Therapist. My insurance paid part of it for a while but soon, the bills were entirely paid by us, no financial help was provided. In the end, a month prior to starting Kindergarten, my son was supposed to obtain the services of a government paid Speech Therapist. As he was so close to start school, they deprived him of them, saying it was now the responsibility of the school to provide this service. I can’t bear the thought that my son may have been verbal now had he benefited from this service.
As you can see, special needs require the special services or other type of help that may be provided by the government in your area. Families living with Autism are not having it “easy” because of the help they receive. Such a statement can only be made by someone unaware of the realities of Autism.
Misconception #4: Autistic people are all… …mentally challenged!
Being mentally challenged is a condition that affects a large number of people for various reasons. While people with Autism can also be mentally challenged. Like anyone else living with a disability, autistic people can face numerous challenges, some mentally, some socially and some physically. Mental challenges, just like Autism, offer various levels of challenges, some more severe than others. Stating that people living with Autism are all facing mental challenges would be false and unfair. The same would apply if you would say that everyone living with Diabetes will become blind or will deal with amputation.
There is nothing wrong with someone being mentally challenged! In life, you work with the hand that you were dealt with, not that any of it was your choice. When I look at my children, my son is non-verbal while my daughter is about to communicate verbally. Not all children diagnosed with Autism are non-verbal. Not all children living with ASD displays a lack of eye contact. My daughter is certainly not displaying that behavior but my son is without reminders.
When my son was 2 years old, an older boy called him “retarded” because he was silently showing his excitement by flapping his hands. While he may not have fully understood the offensive statement made towards him, he understood the intention by the aggressive tone used to say it. It brings me to say that making a statement that is not based on facts should never be made in the first place. Even if it does apply, nobody likes to be labeled by their needs, which were not chosen in the first place.
Judging people should only be left to judges doing their job or a jury. Would you like your children or yourself being judged by your weaknesses? Think before you speak as words can harm others!
Misconception #5: You can grow out of Autism! All you have to do is be consistent!
Early intervention to the progress that can be observed in people with Autism! In some cases, in can make the difference between someone who is non-verbal to become verbal. In the situation with my children, it helped with walking, playing with others and learning how to be more independent. As much as I would LOVE for my children to grow out of it, it is impossible.
You see, sometimes it is genetic, like it is for my children. Sometimes, it is due to a difficulty at birth or other causes. Other times, scientists are not sure what the cause for Autism is and they simply call it: “Bad luck”. One thing that all doctors agree on is the fact, there is no cure for Autism. There is also another fact to consider when talking about Autism Spectrum Disorder, it is also physical.
Experts explain that in the “normal” brain, each part of the brain has a special function. Autistic brain works differently as it is “wired” differently. Some areas are underdeveloped while others have different functions, in comparison to the ones meant to be. That being said, consistency and tenacity have nothing to do with it. Parenting skills are not the issue here, the nature of the disorder is the culprit!
Misconception #6: People with Autism are not… …emotional!
Autistic people are often unable to read body language related to emotional or physical reactions, but it does not make them oblivious to the emotional world. In fact, they have feelings like you and me. They often overreact to objects, people and situations. They may have difficulty and in some cases an absence of empathy, but it is certainly not by choice!
Make a comment and they will react to it! They may not understand if it is a joke or a blatant lie, but they will realize by your tone and some of your comments if they are hurtful or not. My son is a very moody individual. The littlest detail may set him off! Most of the time, the things that may frustrate you or that may not bother you may cause him to be distressed. Dasan may laugh at an angry face because he is unable to read the expression but the tone that is used to make it clear to him.
On the other hand, my daughter is so anxious to please everyone that a tone of voice will make her cry while a facial expression may confuse her. If someone lies to her, she doesn’t realize it. It is especially true with strangers which is a huge concern of mine.
My answer to people stating that someone with Autism is incapable of emotion is: “Get your facts straight! Until you live, love or work with someone who has Autism, you have no clue what they are like, emotionally.”
In conclusion… …THESE people are human too!
On several occasions, when consulting a physician for a health problem with one of my children, they would often relate to them as: THESE children. My answer to them always remained the same: “They are children with special needs, but they are children like any other!” I hate that doctors, who should know better than that, refer to children with Autism like they were contagious or aliens.
You may see a child having a tantrum but unless you know the reason behind it, don’t judge them or their parents! You never know when special needs or a disability is the culprit. While some conditions may be identified by physical traits or appearance, Autism is a disorder that you can’t see until you observe or interact with the person.
Never forget, that like any other person, someone living with Autism has the same rights as any other human being. Unfortunately, people’s view about Autism is often clouded by judgments and opinions. I hope that one day people will stop having misconceptions about Autism and open their mind to facts rather than fiction by seeking accurate information!
The pictures used in this lens are my property. They were taken by my husband, Kevin. Our son Dasan and our daughter Kaylee are the stars on these photographs.
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