Always Aware, Always Blue! Part 2

One of the questions I asked on social media was, “What do you wish people understood about Autism?”. The feedback is so insightful. As much as I enjoy hearing from parents, I found the responses from professionals in the field to be incredible. As a parent, there isn’t anything I wouldn’t do to make the world a better place for my child. However, all the teachers and therapists we have met along the way have been so caring and passionate. When I asked the question, I assumed I would only receive feedback from parents but I was so excited to receive feedback from those who serve the Autism Community so passionately. Here are some responses from a mixture of parents and professionals.

There isn’t a specific look to Autism and words such as “they don’t look autistic” can be hurtful.

We see this in our own family. Our oldest son who’s autism is more pronounced is regularly given more patience and understanding then our other two who are not as obvious. My youngest son is an angel at school and typically they will only see his rigidity when something changes in schedule or he has to adjust quickly. This usually comes in the form of concern over the change and pointing out that that isn’t usually how it goes. However, at home, he will come home and be beside himself. He will be easily agitated from the time he gets off the bus, yelling and screaming at me, hitting me, and meltdowns all afternoon. He is also the one that gives me the most issues in the morning with getting dressed because they have to be a certain texture and look, short sleeves don’t go with pants. It isn’t winter, so you can’t wear your winter coat and it is technically summer so I should be able to wear my shorts even though it is only 55 degrees outside. You never know what each individual’s challenges are and this goes beyond Autism, so treat everyone with kindness!

Those with Autism can’t be “fixed”. We have to learn the way they see and feel things and then adapt to that.

Love this one, Autism is not something that can be fixed. One of the greatest things I have learned is how amazing and incredibly different my kids see the world. It is unfair for me to expect them to enter into my world if I am unwilling to enter theirs. The way they see things is remarkable and the way they experience the world can be intense and sometimes too intense for them. There was one incident that stands out to me and it was a moment that was an epic fail on our part. Elijah does not like Home Depot for some reason, stores are difficult for him as is but he really dislikes Home Depot. However, one day we needed to run in there and get something and we thought he would be fine once we went in despite his protests. We were wrong, Tom had to make a very quick exit carrying Elijah kicking and screaming out. He finds the store overwhelming and we cannot fix that for him but we need to respect it. Life became so much easier once we stopped expecting them to do and act how we want them too. We remain flexible because we know that is challenging for them. They give some truly beautiful gifts. My oldest, when he tells me he loves me, it means the world to me because he is easily the most honest individual you will meet. He is sometimes too honest, he says whatever he thinks as fact. My daughter tells some of the best stories, they are almost believable. I love hugs from my youngest son because when he gives them to me they are worth gold because hugging is difficult for him, physical touch can almost be painful for him due to his sensitivities. We are continually adapting to the needs of our children but they truly have also given us some of the most beautiful gifts.

I wish people knew that just because an individual with Autism isn’t looking at you or is non-verbal, they can still hear you!

100% yes! I was recently in a setting with an individual who was nonverbal and the people who were around him were talking about him as if he couldn’t hear them. My heart broke for this young man. This was in a setting where they should have known better. No communication device or pec card system was set up for Him, this made me so sad. His inability to speak was not reflective of his cognitive ability. He could hear perfectly fine and process what was being said, he just was unable to use his words.

Our oldest son has a difficult time at making eye contact and is often seen to be in his own world, however, he hears everything. If I ever doubt that he heard me, I usually hear him repeating verbatim conversations from earlier in the day, this typically happens late at night when he should be asleep. Everyone deserves to be treated with dignity and deserves common decency. You would never walk up to a conversation and talk about someone who is right next to you as if they aren’t there. We shouldn’t do that with anyone. My youngest son tells me all the time, “Mom, I am always listening to you, even when you don’t think I am”. As creepy as that sounds, it made me evaluate how I talk when he is around.

None of these comments are meant to condemn anyone but to inform people. Up until the ’80s, individuals with Autism went undiagnosed and were diagnosed with many other mental health issues as well as in many cases institutionalized. We have come so far in our knowledge and research. However, if you are like me, I didn’t know before my kids were diagnosed. A lot of these misconceptions were misconceptions I held as well. This is why I love April because we have the opportunity to shine a light on Autism and educate to help provide a world that is more inclusive and sees the many gifts every individual has to bring to the world whether they have Autism or not. We all have a purpose and giftings and should be able to find a place where we can be an asset to society. Autism should not be the defining factor of what an individual can contribute. Individuals are so much more than there diagnosis!

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!