Autism in the News!

Long post… Autism in the news! So, these last few days, as I scroll through Facebook, I am truly disheartened by the comments I see. I have two autistic children. My daughter, Emma age 9, and my son Wyatt, age 7. They are the absolute light of my life. I love them with all my heart! They are beautiful. Autism is not. I am literally disappointed in the amount of criticism I’m seeing regarding finding out what is causing so many of our precious babies to have autism. I’m going to start with my kids and tell you a bit about them.

Emma is level 1/2, diagnosed level 2 because there were some characteristics of both. She has emotional dysregulation, selective eating, sensory processing disorder, processing delay, generalized anxiety disorder, social anxiety disorder, and ADHD. Those are just a few of many diagnoses. She is high functioning, but she struggles a lot. We have all the specialists for her, she is on medication to help with depression and anxiety, but she struggles. At least 3 times a week, she will sob uncontrollably and tell me she just has to let it out. She struggles making peer friends. She is at home virtually schooled because combining learning with socialization causes anxiety and makes her shutdown. Sometimes even via computer, she has meltdowns if she has to talk in front of 4 other peers. I have to prepare her for change, all day everyday, narrating our life for her, finding the balance of when and how to tell her so that she neither is surprised, nor does she have too much time to think about the change and cause her to worry and develop anxiety over it. Autism is a spectrum, yes, but that doesn’t mean she doesn’t struggle just because she’s high functioning. She is non severe non verbal, but if I could find a way to take it away for her to allow her beautiful self to shine through without being clouded by the expressions of autism, yes I definitely would. Up until about 6 months ago, when she would talk about what she wanted to do or be in her life, she would smile and say: “Mommy! I want to be a mommy just like you!” Now this is what she says: “Mommy, I want to live alone with a couple cats and a dog.” So I ask why. Her reply: “It would be peaceful and calm like that.” THAT IS HEARTBREAKING. That is what autism looks like for my Emma. SHE is beautiful! She is kind, loving, caring, and nightly prays that God makes the world a better place for everyone to live in. And, let me tell you this… she is 9 and for the last 9 years, she’s worked so hard to get where she is at right now. It used to be much harder. She is in counseling, speech, PT, and social skills therapies, needs modifications to school. The work is endless. Coping mechanisms are our daily life. She is high functioning.

Let’s talk about my son, Wyatt. He is also so amazing. He is level 3 nonverbal. He didn’t eat anything mostly until he was 5 other than formula after breast feeding. When regression hit, he “went away,” didn’t want any attention, stopped laughing and smiling, lost all limited language he had. It felt like he didn’t even know I was his mama. Over the last 7 years, he has worked nonstop to regain a few words, accept love and attention, has numerous therapies for speech, OT, PT, orientation and mobility, and he elopes. He is the most amazing beautiful little boy with a loving, sweet personality. He is becoming more aware which is wonderful, but with that comes his own understanding that he cannot yet express his needs and wants. That causes him extreme frustration. With extreme frustration comes functional behaviors. He has hit himself and others at times. That is heartbreaking. So heartbreaking. I don’t know what his potential is… I don’t know what the future holds…

Both of my children need me in ways that neurotypical children do not experience. Both of my children need pull-ups at night because they do not wake to the body needing to go to the bathroom. My son is currently fully incontinent. We are working on it. Understanding is coming slowly.

We work hard. On things that come naturally in normal development. That is hard. My kids are beautiful, autism is NOT! They are not autism. It does not define them, just as much as my seizure disorder that causes neurological issues for me does not define me. Their names are Emma and Wyatt, their names are not “Autism level 1/2” and “autism level 3.” They deserve more. Just as with any other disorder comes deficit, deficit comes with autism too. Yes, it is an epidemic. It’s not infectious, but to be classified as an epidemic, something does not have to be infectious. Obesity is referred to as an epidemic, but we can’t catch obesity.

So everyone right now who is saying this is a spectrum and that the way autism was referred to by RFK is negative… yes, it is a spectrum. But… everyone on the spectrum struggles, from high functioning to low functioning. Struggles that can be prevented or helped by more knowledge. Do not shoot the messenger. Let knowledge be found, uncovered. Autism is not a gift. Our children have gifts. It is not autism. I can speak from absolute experience as I hold my daughter while she melts down and wishes she knew why, or when my son is screaming crying because he’s so frustrated that the words just won’t come out. Crying with them assuring them that big emotions are okay and I understand. I love my children more than life and wishing they didn’t have Autism and the daily and life-long struggles that come with it, can never negate my love for them.

No one is going to insist on institutionalizing our kids. The child with autism isn’t the epidemic. Autism is the epidemic. Just as with every other disease, illness, disorder, or whatever you desire to call it, ignorance is NOT BLISS! So, let’s just stop criticizing someone because the words may not be appealing or they feel a certain way. For the first time, someone is working to find a way to HELP OUR KIDS! Be grateful! Stop making this about WHO it is or what administration is doing the research and make it about what OUR KIDS NEED. We’ve been doing it alone for so long! And now we have the opportunity to have help! Be grateful, thankful, and appreciative that we HAVE BEEN HEARD FROM ALL THE ADVOCACY AND AWARENESS THAT WE SPREAD!!