A Mom, a Daughter, & Autism

 Seven years ago, there was a first time mom of a beautiful little girl. She could tell her daughter was special from the time she was 1 day old. She was extremely alert, focusing on every little detail around her. She didn't want to nurse, or really be held, but Mom could tell she was bright. 

Time passed.

She surpassed all gross motor milestones. She even walked at 10 months. She taught herself the entire alphabet (upper and lowercase letters) by watching Super Why! at 21 months old. 

But, she would scream when brought into the doctor. She could not understand the simplest of directions. She didn't care if her Mom or Dad were around or not. 

Fast forward 2.5 years later. 

She received her autism diagnosis. Mom cried. Mom cried because she was:

1) Scared. She had been taught that autism=bad. She was worried her little girl would never be able to leave home, get a job, or have her own life.

2) Selfish. She deserved a "normal" child. She was responsible. She didn't smoke, drink, or do drugs during pregnancy. What went wrong?

3) Relieved. She knew that something wasn't quite right. Now, her daughter at least could get some help that she needed. 

4) Uneducated about autism. 

     She tried to become educated. She read everything and anything about autism she could get her hands on - which was not much. 

     She joined Facebook groups for parents with autistic kids. These parents felt bad for their kids, but even more for themselves. 

     She felt lonely. When she would try to talk to parents about her daughter's diagnosis, she could see their demeanor change. Sometimes to pity. Sometimes to panic or fear.

     

Time passed.

Mom had 2 young kids. Her daughter (now 3) and an 18 month old son - who did not believe in naps or sleeping in general. Her husband worked 60-70 hours a week. She had no family around to help and no extra money to pay for help (not that anyone could handle her 2 kids anyway. They were what some would call, "extra"). It was difficult.

Mom had never been able to focus her whole life. Spacey, confused, unable to "see" messes. She was able to manage, until now. She went to her doctor, realizing with the help of an elementary school turned Facebook friend, that she had undiagnosed ADHD. 

She sobbed uncontrollably in front of the doctor while telling her concerns. The doctor said, "You probably do have ADHD, but you have depression too. Let's treat that first". 

Time passed. 

While the anti-depressants helped, Mom still couldn't focus. She would lose her temper easily due to constant disruptions from the kids, causing her to lose her train of thought. Her brain felt like a pinball machine - thoughts banging and pinging back and forth. She sought out an ADHD diagnosis and then received one. After she began both medications, she became a new person - dare I say a better person. 

She began to understand that diagnoses like depression & ADHD were not some type of "character flaw". They were as real as diabetes, heart disease or cancer. No one is ever embarrassed to say they have high blood pressure, so why should Mom be embarrassed about mental health? 

Her daughter was always wonderful and Mom always helped her as best as she could. But, when Mom began taking care of her own mental health, that little girl began to THRIVE. 

Time passed. 

That girl, now 6, was amazing. Silly, loud, bright, creative. She and Mom would do art together. 6 loved writing books. She told Mom that she wanted to write about something that had happened to her at school that week. Mom and 6 worked on it together. Mom realized that their life was pretty funny and that they had come up with a lot of ways to help 6 overcome some challenges she had. Mom and 6 decided that writing books about their family could help other families.

Mom joined Twitter to connect with other writers. 

A (short) time passed.

Mom always knew she and 6 were A LOT alike. But Mom did too well in social situations to be autistic, she just knew it. Yeah, maybe she was quirky. And didn't really know any people like her. But autism? Nah. 

She began to connect with people in the autistic community on Twitter. 

She could not believe it. These people were Just. Like. Her. 

They used their hands to make "L" shapes bc they still didn't know their lefts from rights as adults. 

They were unable to keep friends when leaving jobs or schools. 

They were constantly accident prone, having seemingly permanent bruises on their arms and legs from running into things. 

It hit her. She was autistic too. She took a couple of autism self-tests. Ding-ding-ding! Autistic.

It all came together. The drive to get her family's books published went into full blast. After all these years, learning everything about autism, she still couldn't see it in herself - until now. 

And if she couldn't see it, how could allistic people understand autism? 

If you haven't figured it out by now, this is my real life autistic journey. It took me YEARS to get here. 

Did I immediately start as a person that knew autism is not a bad thing? 

No. 

Why? 

Because of lack of allistic education about the #ActuallyAutistic community. The more autistic stories written and published by autistic creators, the more educated the population will become. And the more "allistic" people will come to realize they are also autistic- like me. 

Because of the negative stigma the word "autism" carries. We are making progress every day. But keep in mind, it was not THAT long ago when the general population thought Jenny McCarthy was the most knowledgeable person about autism - her book was published in 2007. 

What we can do is keep fighting. Spreading our #actuallyautistic stories, showing that autistics are dynamic. 

Showing that not all autistics are Sheldon Cooper. 

Showing that girls and women can be autistic too and that they are usually loud and frequently talk "too much".

We can and will get there, but only through sharing our autistic experiences and education. 

When searching for comparison work for my book (target audience ages 4-8), there were NONE. 

Not one picture book about a strong, autistic main character, facing real struggles like sensory overload. Sure, there were the "my brother is autistic, but we still love him" type books. But how can the autistic community gain strength using that narrative? And how can people become educated about autism when the information is not available to them? 

I am working Every. Single. Day. to get our series published. Because my work, and all autistic created content, is important. The best way to help is to share my story, and other autistic stories. 

Thank you to all who have taken the time to read this post. I am beyond grateful.