Autism isn’t a death sentence
May 4, 2019
When I was little, I thought I was a normal kid: I went to school, writing funny stories and blathered for hours on end about my favorite games. I knew I went to occupational and speech therapy and that certain sounds drove me nuts, but I didn’t think much about it and brushed it off as a personality trait.
But then I started my freshman year in high school and noticed something made me stand out from most of my classmates. Was it the way I talked, or perhaps was it the way I acted? Maybe it was because my interests were foreign to most people in my age group. Then I thought about all the times I went to therapy. Sure, I went to develop fine motor skills and put my words into sentences, but really, why did I go? Finally, I noticed how my sister’s singing made me upset – and that’s when it hit me.
One day, my Mom and I were in the car when I asked her about my concerns. She told me I was diagnosed with pervasive developmental disorder not otherwise specified (PDD-NOS) when I was three, and that’s when it finally made sense. For years, I didn’t know why I acted the way I did, and now that I know I’m on the spectrum, I’m relieved that I’m not a terrible sister and an evil daughter because when I was 13, that’s how I saw myself. From there on out, I came to terms with myself and started embracing myself.
The good news was that I started to accept myself for who I was. Unfortunately, I found out there were organizations such as Autism Speaks that portrayed autistic people as villains who destroy their parents’ marriage and happiness in some of their campaigns. To my shock and horror, there was a mother in a PSA called “Autism Everyday” who talked about driving herself and her autistic daughter off the George Washington Bridge, but didn’t do so because she had another non-autistic kid. She said this on camera while her autistic daughter was in the room.
First and foremost, autism isn’t a disease and it needs to stop being treated as such. You can’t catch autism as you would catch the flu or measles, and it doesn’t destroy the body as cancer does. Besides, you can’t cure autism. Our brains are structured and wired differently from non-autistic people. It’s a part of who we are and if somebody tried to get rid of our autism, we wouldn’t be the same.
Despite what the media says, autism isn’t entirely bad. I know that it isn’t always sunshine and rainbows and that there are challenges autistic people and their families face in their day-to-day lives. I also know that not every autistic person is the same. But we shouldn’t determine their worth based on their ability to talk and do things.
If I could give advice to any parent raising an autistic child, I’d encourage them to teach them basic skills such as tying their shoes and holding a pencil, provide them with tools for communication and support their special interests (things that they’re passionate about such as trains or cartoons). Allow them to stim (just as long as they’re not hurting themselves or others) if they need to block out negative sensory input or express themselves. Support organizations that support autistic people such as the Autistic Self Advocacy Network. But most importantly, believe in your kid and help them do the best they can.
If your kid is having a bad day and feels like they need to change in order to fit in, remind them that it’s okay to be different and that they’re not broken. After all, it’s okay to be the unicorn in a group of ponies! If everyone had the same brain and personality, life would be boring.
Amber Baack • May 10, 2019 at 10:22 pm
I have no words. Yours are so well written, any reposnse I could give would not do this justice. Thank you for telling your story, you will do great things and inspire many. Keep it up.
Alicia Ryan • May 7, 2019 at 10:50 pm
Wonderful written Gracie!
Lisa Macaluso • May 7, 2019 at 7:59 am
Totally Awesome !!! ❤️😊
Solie Brown • May 7, 2019 at 2:08 am
Enjoyed this article. Coming from a subjective point of view you make wonderful points and show people that being on the spectrum or autistic is something that parents and society should embrace and give love unconditionally. Raising a so-called “normal kid” is just as challenging and learning to love children with all that makes them unique and special is our true purpose as adults.
Harriet Kirn • May 6, 2019 at 9:08 pm
Awesome…. sending to my almost 16yo grandson who is on the spectrum. Thanks!!
Chrissy Mendel • May 6, 2019 at 8:48 pm
Gracie, I am sitting her speechless as I read this with tears in my eyes. You speak from the heart and share first hand experiences. I absolutely could not be more proud of the phenomenal young lady you have become. I always knew that was something truly special about you, and you are a true advocate. You will absolutely ALWAYS have a special place in my heart. I love you and beam with pride as I read about all the wonderful things you are accomplishing! Love you my sweet girl, you truly are an
Inspiration!
Missy • May 5, 2019 at 2:09 am
This is crap autism is a terrible disease and we need a cure. High functioning people please sit down. There are people with autism who scream, cry, and are trapped in their minds 24/7 all day everyday. 2019 we are finally standing up and vocalizing with the voiceless!! Standing up for low functioning. No more talk of neurodiversity bullshit! Autism sucks.. prayers for a miracle!!
Rajesh Bihani • May 5, 2019 at 1:28 am
I will like to know your thoughts about an autistic adult who is totally non-verbal, who keeps banging his head into walls and needs a helmet so that he will not hurt himself, who keeps bitingbhis hands and fingers till they start bleeding, who is totally dependent on someone for basic hygiene skills, and I can go on and on. Who is out there speaking and advocating for them? Their parents have given up everything to take care of their child, have undergone huge financial crisis to provide best possible basic care. These are the people on the other end of the spectrum; very far from where you are on the spectrum. Now for heavens sake please do not go start blaming the parents for not embracing their child’s autistic ‘traits’. They just can’t afford the luxury of leaving their child’s autism as is; that is simply not an option. They continuously keep asking this question ‘what will happen after we are gone?’. So what is wrong if an organization highlights this end of the spectrum too?. I would very much like to know what you think about the individuals at the severe end of the spectrum. Awaiting your reply.