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“What is autism?” That was the first question my 5-year-old daughter asked me when we informed her that her younger brother has autism. Honestly, when she asked me that question, I had no freakin’ idea. We had our suspicions months prior to his legal medical diagnosis. Enduring it prior to the diagnosis leads me to believe I somewhat know what autism is. Boy, I was super wrong. My answer to “What is autism?” is quite different than it was just 4 months ago.
It’s another day of therapies. Another day of handing over a co-pay or three. Of course, another day of either filling out endless paperwork or reading denial letter after denial letter. This may seem routine. While it is, each day is a surprise in our home. The idea of a routine was set to the side almost 3 years ago.
Three years ago we welcomed our youngest, our son into this world. He was a little early coming into our world. But, nonetheless, he came out a fighter. We have spent every week of his life in either some type of therapy or a doctor appointment. It began with not gaining weight. That resulted in weekly doctor appointments and weight checks for about 3 months.
As days went by, we began noticing more abnormal issues. These issues ranged from how he responded to us to his mobility and muscle tone. The first sign he exhibited of possible autism didn’t strike me at all as autism when we first noticed it. In fact, I was almost positive he had some hearing loss.
The reason I believed it was hearing loss was that he hardly ever reacted to any type of sound. Even if it was a loud sound right near his ear. He also would never respond when we would say his name. But, a hearing test revealed that his hearing was perfect. That’s when I began doing some extensive research on Dr. Google.
I’d say when the research began, our autism journey also began. I was blown away by how similar his behavior was with someone with an autism diagnosis. This was definitely something I would bring up with his pediatrician at his next doctor visit. Which was, of course, the next week for his 18-month checkup.
Our Pediatrician’s Answer to “What is Autism?”.
Little did I know, an 18-month checkup is a perfect time to start discussing developmental worries such as possible autism. In fact, at his visit, I was given an M-CHAT form to fill out during his visit. If you’re not familiar with the M-CHAT, I’ll give you a little rundown.
Introduction to the M-CHAT
M-CHAT is the abbreviation for The Modified Checklist for Autism in Toddlers. According to the M-CHAT website, the test is usually given between 16 and 30 months of age. The test helps your child’s pediatrician assess his or her risk of having autism spectrum disorder.
The test is a questionnaire that the child’s parent/caregiver fills out. On the test, you’ll find questions that are in relation to the child’s behavior in everyday situations. Such as their response to their name being called, their physical skills, and so on.
Depending on the final score, you may be required to fill out another questionnaire in the near future if there are some concerns. Once the second questionnaire is filled out, the score is evaluated. This is when the pediatrician will refer the child for further evaluation and/or decide to just monitor the situation.
The Pediatrician’s Answer to “What is Autism?”
In our case, I only had to fill out the questionnaire once. The score was enough for our pediatrician to go ahead and send a referral in for our son. You see, a child with autism spectrum disorder needs extra help with their daily routine. In order to achieve goals and get the right help for the autism, our son was referred to a local developmental pediatrician.
The pediatrician we see is one of the only pediatricians that specializes in autism spectrum disorder. We were actually told it may take up to 2 years for us to receive an appointment. Thankfully, 6 months later we were off to our first appointment with our new doctor.
Our appointment was an hour long. The doctor asked us questions similar to the ones you will find on the M-CHAT. But, most of the appointment was spent her closely watching our son’s every move. We actually spent most of the appointment in complete silence. While she observed, helped, and played with our son.
At the end of the appointment, she informed us of what we pretty much already knew. Our son does meet the diagnosis criteria for the severe autistic disorder. After breaking the news to us, she asked us if we knew exactly what autism is. I came clean about my time with Dr. Google. She must hear that a lot. She didn’t seem surprised.
The developmental pediatrician explained to us autism was a developmental disability. She informed us that it often was a combination of awkward social interactions. As well as miscommunication and lack of safety awareness.
After stressing the importance of safety with someone with autism, she spoke to us about available resources. Resources such as the Katie Beckett Fund and Autism Speaks. We also discussed the current therapy my son was in. At the time, he had in-home special instruction once a week.
The importance of finding speech and occupational therapy was also emphasized. This was something we hadn’t been able to find a constant avenue for. Thankfully, shortly after his diagnosis, we found a center near our home that fit our schedule perfectly.
Now he has in-home special instruction once a week and occupational and speech therapy once a week at the therapy center.
5 Months Ago: My Answer to “What is Autism?”
When our son was first diagnosed with autistic disorder, my answer to the question “What is autism?” would be quite different than my answer today. That’s because I was new to the whole “autism scene”. I know you must think I’m crazy. You’re probably thinking “How can she think she’s a pro after only 5 months?!”. Especially if your a mom who’s been there, done that.
I’ll be the first to admit, I’m far from a pro. Definitely very far from a medical professional. But, when our son was first diagnosed medical explanations were all I knew how to give. Because, of course, Dr. Google and medical reports became my best friends.
If you would’ve asked me 5 months ago “What is autism?”, this would’ve been my answer.
What is Autism?: My December 2017 Answer
- Autism is a neurological disorder that is more common among boys.
- Many children diagnosed with autism also suffer from epilepsy, learning disorders, and developmental delays.
- People with autism have a hard time communicating with others.
- Autism is when your child doesn’t come when you call them.
Now, let’s fast forward to today, April 2, 2018. Which happens to also be National Autism Awareness Day. April is also National Autism Awareness Month. My answer to “What is Autism?” is totally different.
Sure, all the above pretty much still rings true. Although he is becoming much better at responding when his name is called. Which makes us super happy since he will transition into public school in a few months!! (Can I just say this is the scariest moment of my life?!)
The truth is, my response to what autism is now is an oxymoron. It’s pretty much a mix of anxiety and no fox given. Because that’s where I am in my life at the moment.
So, as a newbie autism mom, here’s my new answer to “What is Autism?”.
- Autism is strangers coming into your home a regular basis to interact with your children. But, the truth is, these strangers turn into family.
- When you’re managing the symptoms of autism spectrum disorder, therapy is a way of life. There should totally be a hashtag for therapy.
- Autism is a mixture of frequent screaming, silence, and temper tantrums all at the same time.
- Autism is being afraid to go to the grocery store because you don’t want to be the parent with “that kid”. Because you know it may be 1 minute or it may be an hour before the trip is too much for your little buckaroo.
- Patience. You’ll need it and you must learn it. This is a staple. You’re going to need a lot of it.
- Tears and heart attacks. There’s a lot of lack of awareness when it comes to a child with autism. Add a little daredevil with that and you’ll understand exactly what I’m saying.
- Laughter and love. Nobody is sillier than my son. Plus, nobody radiates as much love as he does. It may be a bond that only we understand. But, I’m okay with that. I think he is, too.
- Loneliness. Going on a short trip into town takes vacation prep when we take our son with us. Since our days are unpredictable, and often filled with therapy and specialist, facing the real world is the last thing we want to do during or at the end of the day. As a result, many plans are turned away. Many plans are canceled. When people don’t understand, they become distant. Autism can be very lonely for you, your family, and your child.
- Life changing. Raising a child on the autism spectrum is a life-changing experience An experience that consists of tears, laughter, depression, and joy. All at the same time. It pushes every button you have. But, some way, somehow we continue to push forward.
So, what is autism? Autism is love, understanding, patience, and life-changing. It’s my 3-year-old son speaking to me in a language only we understand. It’s not for the faint of heart. Autism is not easy. It is worth every day though.
Are you familiar with autism spectrum disorder or other developmental delays? If so, I wanna know, how would you answer the question “What is autism?”. They say if you meet one autistic child, you’ve met one autistic child. So, what’s your definition/personal experience with autism?