Do you really know what Autism is?
***This will be a little bit of a long read, but I promise you, it will be worth your time! Thank You for being interested enough in this topic to continue reading***
Do you really know what Autism is?
Meet Finn. He is 3 years old and has autism.
If someone asked you to summarize what you know about how autism presents, what you would say? If you are anything like me (before I learned a lot more about it), you would probably mention things like
- avoiding eye contact
- sensitive to sounds and possibly even touch
- sometimes non vocal
- can't show love
.... you know, the typical things you hear about autism. But did you know that it is such a huge misconceptions that some or all of these points above have to be present to be diagnosed with Autism? I sure didn't until I learned more from Finn and his amazing mom.
Everyone has heard the term "Autism Spectrum" before. Well, that is exactly what it means, only that spectrum is a LOT bigger than we imagine.
Below I am listing some of the common misconceptions with explanation. You can read about it in more detail on this Blog or this article
- People with autism don't feel empathy
Alexithymia is a condition in which people have trouble recognizing and communicating their emotions. About half of people with ASD also have alexithymia, which may explain why many autistic people struggle with emotions and empathy. However, studies show that many other people with autism display typical or even heightened levels of empathy.
- Certain diets are effective at treating autism
Some alternative autism treatments include specialty diets like those that eliminate gluten and dairy. Not only is this practice unproven to help lessen the symptoms of ASD, but taking away certain foods from a child's diet can cause nutrient deficiencies.
(note from myself: as someone that responds to certain foods with a lot of inflammation I can only guess that for those that a certain diet works, they are probably dealing with inflammations as well which may make symptoms worse. But it's not treating the autism, just the inflammation. Take this with a grain of salt, those are my 2 cents)
- Vaccines cause autism
(Before I paste the content below, I feel the need to mention that I recognize this is a controversial subject and I do not want to start any kind of arguments about this one. I am solely posting results of studies)
The vaccine narrative began in 1998 with a study that erroneously suggested a connection between autism and the MMR (measles, mumps, and rubella) vaccine. Since then, researchers across the globe have performed at least 20 related studies and no data has been found to support a connection between autism and vaccines.
- People with autism are generally non-verbal
About 40 percent of children with ASD don't speak while up to 30 percent have limited verbal abilities. Other children with autism may have delayed speech, unusual speech patterns, or may be fluently verbal
- People with autism can't make friends
Despite antiquated notions that people with ASD are non-social, research shows that they not only desire friendships, but are very capable of having them, particularly with other autistic people. It may just look a little different.
Now back to Finn... he is the perfect example for your not so 'typical' kid with autism. Let me tell you about him. When I first met Finn, he was just an infant. My first thought was that he is the cutest baby (and later little kid) that I have ever seen ... other than my own of course, hehe. Finn's smile can light up a room. Every time I saw him in person or in pictures, he always smiled. And it's not just his lips smiling, its his entire face.. heck, his entire body. I don't think I have ever seen such a deep from the heart, truly happy smile before. EVER!
Finn loves his mommy to pieces and hugs her plenty. He will look you straight in the eye and his favorite thing in the world is noise. The noisier, the better.
So how the heck did he get diagnosed with autism? -Well, it wasn't easy but his mom was fighting for him like a lioness for her cub. Below is a letter she has written for me to describe her and Finn's journey so far:
"When Finn was 6 months old I had a suspicion that he might be autistic. Most of his 6 month milestones were delayed and he had begun to hand flap slightly. He had chronic constipation and Reflux which GI symptoms are very prominent with Autism as well. At his 6 month appointment when I expressed my concerns to the pediatrician he assured me that children progress at different speeds and Finn could not possibly be autistic because he made great eye contact, was generally happy and responded to interaction.
By his 8 month appointment Finn still was unable to sit on his own and the flapping was exponentially worse. He wasn’t responding to his name but loved and responded to music so we knew it wasn’t a hearing issue. He was eating baby food but refused certain textures and would not attempt finger foods or Whole Foods at all. Again I went to the pediatrician and he stated Finns strength and muscle tone were normal and he was just being lazy. He said some flapping was normal and he still felt Finn wasn’t autistic because he was still interacting and making eye contact. He made a referral to early intervention who did a virtual assessment thanks to Covid and they diagnosed him with global developmental delay.
Finn did start sitting on his own pretty close to his first birthday. He began self feeding for finger foods but would not attempt using utensils and would not touch messy foods like noodles etc. He had not been crawling at all but had been log rolling to get from point A to point B. To me this seemed like the spinning that was so characteristic of Autistic kids. He wasn’t able to stand at all by his first birthday but had begun to army crawl which was basically him dragging himself across the floor. To me it seemed like he was having coordination issues and again I took my concerns to the pediatrician. He was hugely sensory seeking, for all the senses. He loved bright lights and toys that made noise especially music but showed little interest in any other toys. At his 1 year I appointment I again expressed all these concerns including that Finn was not talking at all. Not even momma or dada and appeared to have no understanding of even simple words. I got the same run around from the pediatrician that Finn was happy and not throwing tantrums and was still making good eye contact and therefore he agreed with early intervention that it was just a global delay and not autism. Shortly after this appointment he did start pulling himself to stand and cruising very short distances only.
By his 18 month appointment Finn still was not talking. He had just starting taking a few steps at around 17 months but still wasn’t walking normally. He had begun spinning and flapping more often and loved to hang upside down and even look at things upside down or out of the corner of his eyes. He would hold lights directly in front of his eyes and put his face directly on the TV. He loved watching toys spin but still was not playing with most toys appropriately. He would take my finger and use it to interact with some toys but would not do it himself. It was at this point that the pediatrician was now suddenly very concerned that Finn couldn’t talk and referred him to speech and Occupational therapy. Now most of these places have 6-12 month wait lists so we got on them but I decided to contact a company that provided Autism testing and was lucky to get a virtual visit within a couple months.
Finn was officially diagnosed right before his second birthday. Even though I knew it since 6 months old and had been fighting for his diagnosis to get help I still cried off and on for weeks after his diagnosis. But once that feeling had passed I began researching. I set up a sensory room in the dining room with a ball pit, bounce house, sliding board and foam blocks. I researched everything I could on Autism treatments everything from standardized treatments to diets and alternative medicine. I’ve tried a little bit of everything, some epic failures and some truly helpful. We tried speech and OT multiple times but ultimately decided it wasn’t for us. At around 2.5 years old I started doing vagal nerve stimulation treatments using music and have seen a huge improvement over the last 6 months.
Finn just turned 3 and over the last 6 months he has started following simple commands, following along with songs with motions, and has probably somewhere between 30 and 60 words or approximations of words that he uses appropriately and consistently. He knows his numbers 0-20, the alphabet, the colors and most simple shapes. He can match and sort objects and is a super quick learner especially when it comes to how things work. He is still super sensory seeking but a sensory diet (*not food related, this just means you provide regular sensory activities) has helped with that and the flapping is now only when he’s very excited. He still loves music and lights and toys that may noise. He loves buttons and switches and will get stuck in loops doing the same thing or watching the same video over and over. But he’s not the “stereotype” autistic and that greatly delayed our ability to get the care he needed. He loves to be tickled and hugged, loves climbing and jumping and running, still makes great eye contact and thank God still doesn’t throw tantrums (well, at least not any worse than any other 3 year old). He’s sweet, and smart and has a contagious laugh and smile that lights up a room. I only hope we can continue to grow together in our understanding of each other and how we can navigate his neuro divergent future the best we can."
Thank you Cortney for telling my readers your story.
And to show you just how amazing of a mom she is ... because none of the so called "Autism Specialist" knew anything about the Vagal Nerve Stimulation Treatment but the little bit she learned on the internet and successfully practiced with Finn, she went on to become certified!
Look at this next picture of Finn. He laughed so big and hard, you can see straight at his uvula! And why was he laughing like this? - Because of my FLASH. Every. Single. Time that flash went of he was cracking up. And I mean belly laugh, you can't help but laughing too kind of cracking up.
***To summarize this so it can hit home ... the child that by common misconceptions shouldn't be making eye contact, be sensitive to light and noise and is antisocial is right here, looking straight at me, cracking up about the bright flash going off over and over. Let that sink in.***
If you have read it all the way to here, THANK YOU!
If you even just read parts of it THANK YOU!
The biggest take away from this post is this:
Autism is a spectrum. A HUGE spectrum. Many symptoms are associated with autism but not everybody with autism has all of the symptoms. Some may only have the milder, unusual, not usually associated with autism symptoms.
Be your child's advocate! You know your child better than ANYBODY! Motherly instinct is REAL. Trust it. Don't give up when you seem to be running into walls. Persistence WILL pay off.
Hopefully this blog post will help open some eyes and minds or even just encourage some to keep fighting!
Love you all