A Misunderstood Life

 "You may think you know what autism 'looks like'.
In fact, though, when you've met one person with autism
you've met ONE person with autism. Some autistic people are
chatty; others are silent. Many have sensory issues, gastrointestinal
problems, sleep difficulties and other medical problems. Others may
have social communication delays - and that's it."

What is Autism Spectrum Disorder (ASD)? It is defined as "a serious developmental disorder that impairs the ability to communicate and interact". But honestly, autism is so much more than that and it's not as simple to understand as you might think. Autism Spectrum Disorder is identified in about 1 in every 54 children. It is also 5 times more likely to be found in boys than in girls. Before autism was an official diagnosis, it was associated with schizophrenia, and it did not get it's own term until 1943. Some people believe ASD is caused by vaccines, while others believe it's because of certain medications taken while pregnant. But what science has learned over the years is that ASD comes from genetics, or a genetic mutation. In other words, autism is a syndrome/disorder - not a disease. Therefore, there are certain traits/characteristics involved, not symptoms. There is no medication. Autistic people are not sick, and I think that is a common misunderstanding.

7 Common Traits of Autism Spectrum Disorder:

1. Difficulty w/ social interaction*
2. Unusual interest in objects*
3. Difficulty w/ changes in routine*
4. Excel in one area, while struggling in another
5. Unusually strong reactions to one or more senses (sensory overload)*
6. Will do (or talk about) the same thing over & over again
7. Intense and prolonged emotional reactions*

I have 5 out of 7*. When I was younger, autism wasn't nearly as common as it is now. Not very many people were familiar with it, and it's one disorder that commonly gets misdiagnosed. I was often referred to as a "spoiled brat" because I would throw tantrums, as in, throw myself on the floor kicking, screaming and crying. I also had the worst social anxiety, and refused to look people in the eyes when they were talking to me. The older I got, the more I learned how to "mask" these characteristics. "Masking is a survival strategy. It generally involves intentionally learning neurotypical behaviors and mimicking them in social situations." This is very common among autistic girls/women, which makes for a harder diagnosis.

I've independently studied autism since middle school. I've worked in schools and group homes with autistic children and adults. I also have autistic cousins. I recently did a poll on instagram asking if self-diagnosis (of anything) is valid. 40% of voters said no, which honestly kind of shocked me. I know, I know some people do it for attention, but not everyone. We are the ones who live with ourselves every day. We know exactly how we are feeling at all times and what is going on in our own bodies. Hard fact.. doctors don't know everything; however, they do know a lot. But sometimes what we're feeling can't be explained, so how can a doctor make a diagnosis based on that information? Tests can be wrong too, unfortunately.

From what I know now, those 'tantrums' that I was having as a child were meltdowns from being overwhelmed. They still happen, which once resulted in a misdiagnosis of bipolar disorder. The real diagnosis is Sensory Processing Disorder. I've had it my whole life, but was not aware/familiar with the term until about 4 years ago. I have since learned how to notice the warning signs of an upcoming meltdown and when to remove myself from overwhelming situations. As an adult, I've become very much an extrovert and crave social situations; although, I still struggle with social cues. I don't make eye contact because it makes me very uncomfortable and I typically speak in a monotone voice, without much expression. I'm not a being a brat - this is my normal, and it's okay. 

The older I get and the more understanding I have, the less I mask my characteristics because I want to bring awareness to them. And the less I mask, the more characteristics I notice. Unusual interest? Yes. I get fixated on specific items or hobbies. Sometimes it'll last a few months, and other times it will be a couple years. Such as my wonderful and childish obsession with all things Beauty and the Beast. That didn't come from childhood. Difficulty with change? I suppose it has always been a struggle, but I didn't acknowledge it until a few years ago when I had a meltdown in the middle of DisneyWorld. Intense emotional reactions? I feel all the feels.. and I feel them hard. Someone can say no to me over the smallest thing, and it can cause me to cry (sob, even) for hours. Example: my brother not letting me eat some chicken nuggets that were in the freezer, because they were bought for him. This has become a joke in my family and it's pretty funny to me now. But in the moment, I was starving and I was very upset.

Trigger warning

So do I think self-diagnosis is valid? Yes, because growing up with 5 out of 7 autism characteristics, explains a lot. It has come to my attention that using the words high or low functioning though, is wrong. It can be hurtful. And even the people that you think are "high functioning"? They are until they're not. Autistic people have highs and lows, and it has nothing to do with their strengths and/or struggles. World Autism Awareness/Acceptance Day is coming up on April 2nd. With this in mind, here are some facts to be aware of: Autism Speaks is not a safe organization to donate to and support. Only 4% of their proceeds are used to support autistic people and their families. In 2009, they released a video comparing autism to aids and cancer, while indicating that autistic children are to blame for breaking up their parent's marriages. This organization also excludes autistic people from their leadership roles. Instead, please support: Autistic Inclusive Meets, Autistics For Autistics and/or Autistic Self Advocacy Network. Thank you.

If you have any question, please feel free to reach out and ask.

Love, 

Miss KatieBug

www.appliedbehavioranalysisprograms.com

www.aboutkidshealth.ca

www.healthline.com