First, let’s talk about “the label”. There has been quite a bit of controversy lately with labeling children and how/whether we should/should not use labels. “It’s not a ‘disability’, it’s a ‘different ability’”or “Person-first language should be used: ‘a child with Autism’ vs ‘an Autistic child’.
Here is our philosophy: labeling is a necessary part of the process in order to better understand differences and also to ensure that children/individuals with any diagnosis get the extra help and services that could benefit them both short term and in the long run. With that being said, let me make it very clear: Labels should NEVER limit expectations. That’s no longer labeling…that’s called stereotyping and it minimizes individual potential based on a belief of limited ability. In order to achieve a goal, you must first believe you can. This is true for everyone. If you have been taught and raised that it’s impossible to ever get an A in school, why put in the extra effort? Why try? It’s more acceptable to just get a C and, after all, you are a “C-student”. On the other hand, if you are taught that with hard work, it is possible to get an A, you might figure out what you need to do, put in that extra work and earn an A. It’s the belief of achieving that motivates us. Don’t ever take that away from a child or individual.
I have personally witnessed “professionals” tell a family that their child will never have effective communication because he was severely MR, Autistic, non-verbal and had “no motivation to communicate”. These professionals didn’t see him as an individual, they didn’t see his behavior as communication, all they saw were his labels. If the family would have accepted that answer, he wouldn’t have effective communication today. They chose to believe that he was an intelligent individual and in their determination, they found a program that worked for him. He is now writing incredibly deep poems and writing about his various interests- politics, peace, business, and girls as well as giving incredible insight into his sensory issues and his life. The problem was the professionals used his label(s) to limit their expectations. He didn’t achieve with them because they didn’t give him that option. It has been proven that children will live up to expectations set for them. If you treat them as if they are limited, they will be limited. If you presume intelligence (treat them as an intelligent individual), challenge them appropriately, teach them while raising the expectations and push them to achieve their goals, they will exceed your expectations every time.
In the end, you can say “disabled”, “handicapped”, or “an Autistic child”, it’s not as relevant as your approach in helping them. The negativity that is assumed by using those words is only proven true by a negative interpretation of them. We use labels every single day and we identify with those labels- female/male, black/white/hispanic/asian/etc., mother/father/daughter/son/brother/sister, best friend, author, actor, model, award-winner, best-seller, olympic champion- we wouldn’t dare take those labels away and say, for example “a child I gave birth to” (person-first language) instead of “my son” or, “a person who writes books” instead of “an author” or, “a person who is a female” instead of “a girl/woman” or “the person I married” instead of, “my wife/husband”. Try replacing all of those labels in one full conversation with another person- they will look at you like you are crazy and once you explain that it’s “person-first language”, they will still look at you like you are crazy. We wouldn’t even think of changing that language and taking those labels away because they are viewed as positive, something to be proud of. Calling someone a “girl” doesn’t make them less of a person (quite honestly, sometimes, it still implies that but we don’t change the language or take away the word…we fight that stereotype with pride! We prove what we can do as girls/women. “Fight like a girl” campaign for cancer is a perfect example!) Why can’t Autism hold that same level of pride for those who have it? Focus more on how to help them build their strengths and less on limitations. Help them break the stereotypes by empowering them as individuals and as a group instead of feeding into the stereotypes by changing your language.
When we have a person with a physical disability, we give them a wheelchair and build ramps and restructure sidewalks. We accommodate and accept them into our society. It’s time to start building meaningful “ramps” in education and in our communities to include our Autistic population instead of just labeling them and putting them all together in one class or group home or workshop somewhere.
It’s not what we call it, it’s what we DO about it. We need to think outside the box for solutions.
Autism 101: Quick Version:
Autism is a neurological difference in the way people perceive and experience the world.
It is not an illness or disease. Their brains are simply wired differently than neurotypical people. It is a completely different way of thinking. It is a neurological “spectrum” disorder, meaning, it consists of individuals with a large variety of abilities and difficulties. They have a more black/white, literal view of the world. They are fact-driven vs emotionally-driven. They have difficulty in reading body language and other social cues. They don’t innately know or pick up on social rules, they need to be taught. They do experience the same emotions and are empathetic and compassionate, most times emotions are expressed differently. Most people with Autism are of average or above average intelligence. Most have difficulty with sensory processing.
Autism 101: Extended Version:
Breaking down the definition:
It effects how people perceive the world–
Example: A person with Autism thinks and makes decisions using logic and facts. They have a very difficult time recognizing social cues like, for example, subtle or even obvious body language to signal someone is losing interest or trying to end a conversation. Sometimes they don’t recognize a difference in the tone of your voice or intonations when sarcasm is being used.
An individual with Autism could have trouble in recognizing emotions, especially those who don’t express emotions outwardly themselves. (Think about it: If I don’t express it that way, how would I recognize it in you unless you teach me?)
It effects how people experience the world–
Example: Sensory experiences of people with Autism can vary but, for the most part, they are MUCH more sensitive to sensory stimuli than neurotypical people. As a neurotypical, it’s like having all of your senses multiplied by 100 and sometimes 1000. I worked with boy who would stop everything to listen to an airplane or helicopter flying overhead- there was at least a minute delay in the time it took for me to hear it. He also could hear FedEx, UPS, and USPS trucks coming from a much further distance than neurotypicals- and he could tell the difference between each one.
“Sensory memory”- a very unique difference is the ability for people with Autism to experience a memory with a very vivid sensory experience attached to it. For example, when someone says the word “banana”, an individual may not only see it as a picture in their head, but they may also connect it to a taste, smell, and texture that they can experience very vividly just by hearing the word.
A neurotypical person thinks and makes decisions using emotions or social biases a lot of times rather than facts. Honestly, I would have argued that most of my decisions were fact-based until about a year ago when someone with ASD picked apart my decision making process piece by piece and showed me how each was connected to a social or emotional component. (As it turns out, “I got it because I liked it and that’s a fact” doesn’t really count as fact-based decision.) A lot of times, we get “feelings” of what we want with no research, facts, or logic to back it up when choosing between items. We are influenced by what looks pretty vs what will be the most efficient or most practical. We would all probably love to be more logical, we’re just not. We’re always concerned with how our decisions will effect others. We think about how our moms, significant others, sisters, best friends, etc will feel about any given decision. We allow them to take part in our decision making processes. We try not to offend anyone and try to stay within the adopted social norms. Decisions we make usually aren’t the logical and most practical choice, but they make us feel good based on emotional and social criteria that we’ve developed over the years. People with Autism don’t have this criteria- they use facts. This neurotypical social stuff drives them nuts for the most part because they don’t understand it, just like we don’t understand what it’s like to make decisions based solely on facts. Neither side is right or wrong but that difference in perception needs to be recognized- not “understood” necessarily, but at least respectfully recognized.
Neurotypicals also live in the “grey” area. For people with Autism it’s black or white- it is or it isn’t. For neurotypicals, sometimes it is black or white, but sometimes it’s grey. For example, wrong and right. Killing is “wrong” but there are certain circumstances in our society that we allow it or even preach that it is “right” or “just”. The grey areas are based on social and emotional criteria that may vary from situation to situation. These situationally-based variances are harder to explain and harder to understand. This difference in perception is sometimes misunderstood as the inability to think abstractly. Yes, having concrete (meaning- consistent, never-changing) rules would be a preference among most individuals with ASD that I know. The reason being, it is much harder to explain something that is more theoretical when it is related to social rules and social context.
“FUN FACTS” About Autism:
There is no “look” to Autism, just as there is no “look” to ignorance.
People with Autism do not all have learning disabilities.
People with Autism do not always have ADD/ADHD. They may be simply processing information at a much faster rate than you and moving on to the next thing before you’re ready. They may also lose focus with tasks that are below their intellectual level. (Do not let outward appearances dictate your assumption of their intellectual level- find a valid way to test them and continue to challenge them! They need you to believe in them and raise your expectations so that they can be successful.)
People with Autism all have a sense of humor.
Sarcasm can be taught. Sarcasm can be fun.
People with Autism DO understand abstract thinking and generalization. It may need to be explained/taught but it is teachable.
Empathy is an emotion that people with Autism experience. It can sometimes be taught to be expressed in ways that we can recognize it more easily.
All feelings, including pain, are experienced by people with Autism. Most of the time, feelings are not outwardly expressed but they are still experienced. Feelings can sometimes be taught to be expressed in ways that are more easily recognizable
Most individuals with Autism are of average or above average intelligence–this includes non-verbal individuals.—-NON-VERBAL DOES NOT MEAN LESS
Non-verbal individuals do not always have poor receptive language skills- most can understand everything that you are saying to them and around them. Please be aware and respectful.