[Note: This originally published back in 2008 through McClatchy News syndication. The information on autism in this era was massively confusing. At this point, I know both my son and I are Autistic, but I don’t really understand it yet. I know he is like me and, unlike other parents of Autistics, I knew he was Autistic from birth. I knew it had nothing to do with the ’autism’ being caused by man-made things. There were ’hundreds of autisms’ being touted at that time. I was also connected with many others like us in my field of online news and online development of news sites. My son’s lack of speaking as a young child wasn’t a focus of concern because we used ASL to communicate between us, and later we communicated on ICQ messenger or AIM. – Eve Reiland (nee Hinson)]
My son was born after midnight during the cooler days of May, before the Central Valley could blaze triple-digit temperatures. The delivery room was packed full of people. The doctor, several nurses, my husband, my parents and my mother-in-law were in attendance. As my son emerged into the world, I expected him to gasp and then cry about the abrupt ejection.
He did not.
Instead he was quiet and blue. The umbilical cord was wrapped around his slender neck several times. Of course I didn’t know that yet, but the jubilant faces of the others gave way to peaked, pinched expressions. When I asked what was wrong. The response was, “Nothing. Everything’s okay. It’s okay.” The reassurances scared me. I was only 20-years-old, but already I knew people lied when things were really, really wrong. Did I not push hard enough or fast enough? The doctor had yelled at me to stay focused, but I kept passing out. He had to assist the delivery with a vacuum device. Before I could convince myself my baby wasn’t coming home, he cried.
Once assured my son would keep breathing, the doctor plopped him on my belly. When his skin touched mine, I panicked. My stomach felt as slippery as satin sheets on a waterbed. The baby was going to shoot right off and smack the floor. I grabbed on to him and asked for a blanket — something, anything — to give some traction. Maternal fear knifed sharp and deep. The days of planning the nursery, rubbing my swollen belly and wishing my son would be born sooner, rather than later, felt whimsical. What the hell was I thinking? I searched for my mom. She sat on the left side of me and appeared happy, but exhausted.
“Mom.” I felt shaky. “I can’t do this. I can’t.” I wanted her to hug me and to tell me it was going to be okay. I wanted to be reassured.
It took her a moment to process my proclamation. When she figured out what I’d meant, she chuckled. “Well, too late now kid. You already are.”
Before I could say anything more the nurse brought over a blanket. I wrapped it around Jared’s mottled pink and white body. His dad reached over and smoothed out his hair and traced his fingers across his greasy newborn skin.
As abrupt as it felt, my mom was right. I was already doing this. I was already this kid’s mom. I sucked in a deep breath, forced my fear aside, looked down at my son and fell in love.
I pounded my fist on the bed. “I can’t do this. I can’t.”
My husband looked at me from his computer chair with surprise.
“I don’t want to be a mom anymore. It’s so freaking hard.”
He nodded. He had heard my outburst at Jared a few minutes earlier.
“Can’t I just quit? Just for one day?” Man, I’d love to have one happy-go-lucky day without the worry and stress. Maybe someone could conk me on my head so I’d forget my obligations.
I just needed to release the fear that constantly gnawed at my gut.
My baby boy, now 14-years-old, was struggling in school again. Heck, he had been marched to the Vice Principal’s office earlier in the week because of a classroom meltdown.
Luckily the VP knew that Jared was a special kid. He knew what looked like disobedience in another student wasn’t the same for my son.
Jared had autism. They worked through it. However, I didn’t. Jared’s shutdowns were increasing and his grades were falling. Again. I felt like the world we had so carefully constructed for him was cracking apart.
I lamented to his dad. “Why can’t he just do it? We’re all working so hard for him– why can’t he pull himself together and at least try? The other kids in his autism program do it.”
This wasn’t the first time I had wondered why Jared couldn’t be like the other kids. Only, before, the other kids were neurotypical. When Jared was a couple months old, I saw babies his age cooing and laughing at people. I wanted him to do the same.
When he started preschool and hid under the desk for weeks after the other kids adjusted – I wondered why he couldn’t go out and play like everyone else.
When he still couldn’t ride a bike at age ten, I forced the issue. I grabbed the new bike he’d gotten as a gift and made him get on it. I pushed and ran with him for part of the way and then, against his pleading request, let go.
If he had no other choice, he’d just do it. Right? It was like what other people said – I wasn’t being strong enough with him. I coddled him too much. I just needed to make him do it and he would.
“Peddle. Just peddle the bike Jared!”
He didn’t. He wouldn’t. The bike slowed down and tipped. Instead of sticking out a foot or a hand, Jared sat stiff. He landed on the curb still gripping the handle bars.
I was pissed. All he had to do was peddle. Now he was banged up and bruised up. Why didn’t he just ride the damn bike?
It wasn’t until Jared was thirteen I got my answer: Autism.
Just over a year ago, Jared’s diagnosis helped us find him a school with an autism program.
Nowadays, mostly, I’m shouting out about his triumphs. I share with family and friends his dreams of becoming a wildlife conservationist or that he’s crazy about Indiana Jones, Pirates of the Caribbean and Naratuo. I let them know he’s made a gaggle of friends and gets asked to sleepovers and birthday parties.
Jared’s recent progress has felt like a miracle. Everyone’s rejoiced.
So why was I freaked out? It took me a couple of days – after my rant to Jimmy – to work through it. What I discovered? The problem wasn’t Jared. It was me. Sometime after his diagnosis, my expectations switched back to default mode.
Now that Jared had support, he’d get right back on track. He’d graduate high school and go to college. His meltdowns and setbacks would be at thing of the past. Heck, one day he’d even get married and make me some grandbabies.
What did I forget? Oh yeah, Jared still had autism.
That’s right, the key component to all of this – I just glossed over it. Mentally I put us back on the everything-is-going-to-be-okay-forever-and-ever track. Society’s milestones of youth and adulthood applied again. I boxed us right back into the pretty package of social norms. When Jared didn’t behave according to that plan – when he didn’t keep up his end of the fantasy – I had my own meltdown.
The truth is I’m scared. I don’t know what life for Jared is going to be like as an adult. I don’t know that he’ll graduate high school or college with his peers — or ever. What other parents can expect, I can’t.
What I do know? Before I can ask the world to accept or have tolerance for people with autism, I have to do it first. I have to accept Jared for exactly who he is and let him set the pace. This means no more preconceived deadlines or we’re-on-the-right-track checklists. I have to stop and take a deep breath, shove aside my fear, look at my son and love him. We’ll do this together. We already are.
More With Eve Reiland
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.