April 2: World Autism Awareness Day

Let’s talk about Autism.

When you say the word Autism outloud, what or who comes to your mind? I bet you think about Sheldon or Rain Man or even Mr. Monk*. We watch them and relate with their struggles, odd behaviors, limitations. We have fun with them, because they have few or no social cues and will not pass by without asking uncomfortable questions. They remind us of times when we were still figuring out the social etiquette and how to properly get in and out without being noticed.

People in the spectrum may whisper to themselves, some are not verbal and some have very specific ways to show frustration or joy – in deep contrast with us. Some slowly learn how to conceal what they are feeling, just to be accepted in certain circles; some are very strict about routines, while others are just plain different and we, neurotypical people, have no clue about how we should talk, listen and establish a relationship with them.

My first contact with an autistic person happened in church. A friend that has 2 sons, both in the spectrum but with very different traits, showed me how she decided to guide her career path in education, so she would be close to her children as well as bring some income to the house. Did you know that 85% of people in the spectrum suffer abuse from their caregivers? Even though studies show that autistic people are 40% faster at problem-solving, due to their hyper developed perception abilities, most will not develop social graces in order to identify and defend themselves from abuse and/or neglect.

First clue: autism is NOT a label we use to define someone WE don’t know how to behave around.

In the autistic environment, I am the odd one. So, let me share what I learned, so far: vaccines DO NOT cause autism. Autism is typically defined as a neurological and developmental condition characterized by difficulties in social interaction and communication skills. Click here for more information.

I started observing kids in the spectrum, but because my interaction was so limited, I never really dug deeper. Until Emma was born. My first concern was, if she was in the spectrum, how we would assist her to live independently and safely? We all know what happens today with the kids in the spectrum or the ones with any deficiency. The world is getting crueler by the second and as a mom, I am concerned I will not be with her the whole time. She will need to learn how to defend herself. This thought makes me sad. We should not live in a place that we are constantly trying to defend ourselves, and yet, here we are.

Emma was first tested at 2 ½ years. We were concerned about her speech delays. She understands everything in English and Portuguese, but her conversational abilities were deficient. We thought it was happening because she was bilingual and also, because she didn’t listen well. We gave it time, as we looked for therapies and solutions. Emma had surgery to put tubes in her ears, and her responses became clearer. We believe that she could answer better, because she was listening better. However, still no progress on some “metrics” we observed to be sure she was growing as she should. Physically, she is 75% taller than her peers and she is gaining weight. She already lost 4 teeth. She is welcoming and notices when people’s demeanor changes, but she does not recognize when someone is trying to take advantage of her. She often repeats behaviors and phrases with no connection with what is happening. She loves the seasons, and her favorite holidays are Halloween and Christmas. She is pleasant and loving. And autistic.

The test results hit me like a ton of bricks. I cried for 2 days. And I have no explanation for my feelings, and I will never apologize for them. When you are overwhelmed, seldomly you will see anything clearly. I was anxious and lost. When that happens, I usually call mom and we pray together. Prayer calms my heart and I can breathe again.

My husband is chill. He looks at me and says, she is a perfect, loving little girl and her life will be amazing! Reassuring, huh? In fact, it is. All the people in the spectrum that I am learning from and researching with tell me they feel like a mystery was solved, that it all makes sense. They feel relief. So, why shouldn’t I?

After that, I contacted a friend who is also a mother of autistic sons. She knows what this new world will be for me. She gave me pointers, information, links. She talked to me about routines, predictability, language process demands. She also gave me links for trainings. I did my due diligence, watched MANY talks and bought MANY books about it. Whenever reading about autism, look for the autistic authors and researchers. They will guide you to what works for THEM. The sense of direction and purpose filled my heart and pushed away my fears. Don’t get me wrong, I still have plenty of fears, most unjustifiable, but I am informed and that gives me safety.

I shared this information with my family, coworkers, some friends, and now, with you. Maybe you will never face a challenge like ours. Maybe your challenges are bigger and deeper than ours. But again, this is not a competition. We are in this together, no matter if we are on the autistic or on the neurotypical side of the spectrum.

Now it’s time to rebuild my village! I am so happy to share with you that the Burkburnett ISD has an amazing team of professionals that will cater to your kid’s need. Speech therapy, occupational therapy, transportation, one-on-one activities to support the needs and foster growth. We were still unsure about where Emma would go after her years at preschool ended, but we are fine now. We asked questions, read many reports, interviewed parents, contacted bloggers. I went out to the Region 9 Education Center. They sent me A LOT of resources and many pages translating the lingo. We want to know, and these people want to share. Perfect combination!

There are groups in the Texoma area of highly educated parents and professionals that will not rest until you have the answers and resources you need. Here: (4) Families for Autism Support of Texoma (F.A.S.T.) | Facebook

I am no longer alone. My Emma is excited about her new school year and I can’t wait to see what she will do.

This is how autism looks like to me today:

 

Food for thought:

  • *Mr. Monk is a favorite of mine, but believe me, he is not autistic. He had a very traumatic childhood and after his wife dies in a tragic accident (he took 8 seasons to solve the mystery), he developed severe obsessive-compulsive personality disorder, which is “a gift and a curse” because heightens his awareness and quirks at the same time. It may look like autism, but it is not.
  • Asperger’s Syndrome and Autism Spectrum are not the same thing.
  • You can avoid ableism (discrimination against persons with disabilities) by educating yourself.
  • Avoid terms as “high-functioning” or “low-functioning”. These expressions show only that you are assuming those in the spectrum are functioning higher or lower than perhaps what they seem to be capable of. We are not machines, and we should not be expected to perform as such.
  • Respect anyone with any kind of “odd behavior” by asking questions and changing your behavior after receiving the answer. Be ready to change your paradigm. Why everything you know about autism is wrong | Jac den Houting | TEDxMacquarieUniversity – YouTube
  • Parents have an amazing influence and power in the success of theirs children’s lives, autistic or neurotypical: Autism – How My Unstoppable Mother Proved the Experts Wrong: Chris Varney at TEDxMelbourne – YouTube
  • Autistic persons are persons first. They have feelings and emotions. Just because they don’t show them, it does not mean they are not there. Letting Go of Control and Rethinking Support for Autistic Individuals | Amy Laurent | TEDxURI – YouTube

P.S.: So you know, there are many brilliant people in the world. Just a few of my favorites here; by the way, they happen to be autistic too: From left to right: Dan Aykroyd, Dr. Temple Grandin, Tim Burton, Bill Gates, Steve Jobs, Anthony Hopkins, Casey “Remrov” Vormer (pictures from Google).

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