Always Aware, Always Blue: Part 1

Today, April 2nd is International Autism Awareness Day and April is International Autism Awareness Month. This is the month where we place blue lights on our house, blow bubbles and wear blue in hopes that it makes the world a more inclusive place for our children. We have three beautiful children who are all on the Autism Spectrum. Autism used to be a really sad word in our home. As I have shared in another blog, at the beginning of my kids diagnosis’ all I could see was the challenges that my kids’ would have. I was worried, nobody would see the potential that I could see in my kids. I was worried that people wouldn’t love my kids due to their behaviors. Then the selfish parts of myself worried people would judge me for their behaviors. The truth is that some of these are unfortunately true due to a lack of education. For the most part, I have come across very understanding people and people who believe in and love my kids. Nevertheless, this is why we have Autism Awareness Month, to raise awareness and advocate for more inclusivity

In raising awareness and advocating for inclusivity, I will be having guest bloggers throughout the month of April who have different connections to the Autism Community. Tom and I have truly met some of the most amazing people in our Autism Community. We cannot wait for you to meet them as well.

This week I asked a couple of questions through my social media to gather some questions about autism as well as what people wish others knew about autism. I will do my best to address and share some of these. This will be a two-part blog post. There were many questions to address, however, these seem to be the most frequently asked. Just a reminder, I am a mom and by no means do I pretend to be an expert. I can only speak to my experience as well as what I have researched.

How is Autism Diagnosed?

The diagnosis process was very different for my oldest as compared to my twins. They always hope to diagnose children early so they can receive early intervention. The process for the twins took about a year from the time we started having concerns at 2. They were closely monitored by a Developmental Pediatrician who eventually referred them on to a Neurodevelopmental Pediatrician. My oldest was evaluated by several people who observed him. There was a Neurologist, Speech Therapist, Occupational Therapist, and a Psychologist in the room. In both evaluations, they looked for speech delays, social delays, physical delays as well as repetitive behaviors and rigidity. They also looked for sensory aversions as well as sensory seeking behaviors. They use the DSM-5 to diagnose and in order to be diagnosed your child has to meet the criteria.

This is a very good question because I have come into contact with a very small population of people who have felt that parents seek out an Autism Diagnosis as an excuse for there bad parenting. It would be very difficult to receive an autism diagnosis for your kid due to bad behavior. The DSM-5 criteria wouldn’t be met simply due to negative behavior. This brings me to the next question.

Temper-tantrums and meltdowns, is there a difference when it comes to Autism?

The answer is yes! My children have both! The difference is the level of control and duration in my experience. There are some behaviors my children can control and others in which they cannot. Various therapies work together to help an individual with autism control the uncontrollable behavior. My youngest son, can have full-on tantrums just because we didn’t get him what he wanted and when he wanted like his neurotypical peers. However, my son can also come home from school after having held himself together all day at school and then come home and one little thing is enough to send him from 0-10 in a matter of seconds. The duration of this meltdown can last from as little as 20 minutes to a couple of hrs. The behaviors that come out can be aggression, throwing objects, not hearing what I am saying. Typically we have to ride these out because, he will not allow anyone to touch him in these moments, talk to him or offer any comfort. This is heartbreaking as a mom. However, it does look like a temper-tantrum but does not look typical for his age and lasts longer than what is typical.

Do all Individuals on the Autism Spectrum have Savants like ‘Rain Man’?

No, every individual on the Autism Spectrum has various strengths and weaknesses. There are individuals who have remarkable abilities regarding memory but not everyone can calculate intense mathematical equations or count cards. However, it is not unusual for individuals with autism to have a great interest that they are experts on. My oldest who is eight can tell you every flag of every country in the world, he is humble enough to believe that Tom and I also know every flag to every country. Moses is a deep intellectual thinker and will stump you with many things that most adults don’t think of. My daughter has an incredible memory and only has to hear a song, book, or movie once before she has it memorized. However, they do not have Savants but are incredibly smart.

By listening and asking questions we can create a more inclusive world. Speaking for myself, I would much rather someone ask me a question about my children to gain understanding then to distance themselves from my child due to a lack of understanding. Please, keep asking questions and listening. Show empathy and kindness even when you are uncomfortable and don’t understand. There are challenges that we all face whether we have a diagnosis or not, it is important however that we are known for who we are and not by our diagnosis. Everyone deserves to be known and not stigmatized. Part two to be posted tomorrow!

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