A change of heart: our new story

Tomorrow is World Autism Awareness Day (really Autism Acceptance Day if you’re in the know) and I wanted to write something short and sweet. It has, however, turned into a novel. If you’ve been here for a while, then you may know parts of our story. You might have seen us announce our pregnancy back in 2016. Maybe you started following our family after we welcomed Lucas earthside in 2017, or maybe after we moved all the way across the country to Texas in 2018. I’m going to attempt a refresher for those who may have joined us after that fall. Bear with me. 

After a low score on his 18-month autism evaluation raised some concern, we began seeing a developmental pediatrician who advised us on a treatment plan: speech therapy (he only had two recorded words) and occupational therapy (his lowest scores were in joint attention/ shared joint attention. Everyone was suddenly very concerned about his eye contact and environmental sensitivities). We lucked out with the world’s greatest support system at Pediatric Therapy Specialists in San Antonio, but his progress was still very slow. As Lucas grew older, the milestones kept passing us by and I was increasingly concerned about his developmental delays. 

Shortly after his two-year-old visit to his developmental pediatrician, while talking about how therapies are going, he goes ahead and lays this doozy: “So Tricare allows a provisional diagnosis of autism in order for a patient to receive services that they wouldn’t qualify for without that diagnosis. So, for the purpose of Lucas to get in home ABA (applied behavioral analysis) as part of my treatment plan, I would like to go ahead and give Lucas a provisional diagnosis of autism.” We did three weeks of center-based ABA before pulling him out, then six months of in-home ABA. In that time, we had four different BCBA’s come and go, but managed to keep a consistent, very sweet RBT, who I think was the only reason we lasted so long. She had a way with him. She got reassigned and shortly after starting with our final BCBA who kept saying inappropriate things about gender roles and our family, and we decided to call it quits. 

I get very very sad when I talk about our ABA days. I just re-read all my old posts about it. I want to shake past me, and shout, and cry “YOU HAVE ALL THE SIGNS! YOU ARE HIS MOM! PROTECT HIM! DO BETTER! GET OUT!” It’s been a year and a half since we pulled him out of ABA and not a day goes by that I don’t regret our initial decision to put him in. I will write more on this one day, but I’ll leave this for now. 

So we kept on chugging with speech and OT. We were intentional with our work at home with him, and I was absorbing all that I could from both of his therapists on how to make our home a sensory friendly, need- meeting, safe space. Speech started. Slowly. He started saying colors. It was small, but it was a start. I picked my battles more, especially when I saw that a sensory need was in play: not wanting to put on shoes, so much messy/ water play, etc. I learned what inputs helped keep Lucas regulated and which didn’t serve him. And at the end of his six month provisional status, he was given the official diagnosis of autism.

But most importantly, I started reading blogs and posts written by autistic adults/ teens. I started listening to their experiences and really trying to HEAR them. And something HUGE happened. I changed my mind. About nearly every opinion I had formed on autism up to that point. 

  • I was told early on by all the doctors/ specialist that we saw to use “person first” language around his diagnosis i.e.: Lucas “has autism.” But he doesn’t “have” autism. It’s a neurodiversity, a different brain wiring system, it’s not a disease. Without autism, there is no Lucas. You can’t sever the two. The same way you can’t say someone “has blindness, deafness, etc.” I started using “identity first” language shortly after ending ABA. It felt so weird to say at first. I had been so conditioned to think of “autistic” as a dirty world (which is how a much younger version of me would have felt about the words lesbian or queer, and we see how that turned out). In an online poll taken by Autism Speaks (an organization who has a long, ugly history of silencing autistic voices, using demeaning rhetoric to describe autism, and perpetuating arguably the most painful symbol to the autistic community, the puzzle piece. More on them another day) 86% of actually autistic folks prefer identity first language. This was despite a bunch of neurotypical “autism warrior moms” who tried to hijack the poll. Not all disability language follows this rule, for example, unanimously the Down Syndrome community far prefers person first language (so and so “has Down Syndrome”). And I respect individuals who prefer person first when it comes to autism as well. I personally want to change my language to reflect the values of the wider autistic community.
  • I used to read tons of literature, watch loads of videos, eat sleep and breathe anything I could find on ways people have “fixed” their autistic children, often referred to as the bio-med community. I considered Lucas’ diet, gut health, vaccines, even bought essential oils that claimed would “make him talk.” I poured over YouTube videos of parents filming stimming, meltdowns, self-injurious behavior, and in therapy. I even found a mom claiming that raw camel milk was a game- changer for her autistic son (who she claims is “now cured of his autism”).  

It took me way too long to figure out for myself that LUCAS ISN’T BROKEN. He was made perfect and whole and if there was anything to be done it was this: love and support the beautiful child (and said child’s amazing brain) that I have right here in front of me. I had to learn how to be comfortable with Lucas without demanding anything but his presence. Can you imagine how exhausting it must be to have your parent constantly ASKING of you? Not the daily asks like, “Hand me your cup.” or “Hold my hand.” But those that fall into the category of behavior modification. Constantly placing demands. I found that I had become so indoctrinated that I couldn’t turn it off. It was a muscle that I had to train. And I still have to work on this constantly. 

Many people will criticize my decision to simply let him be, claiming that I’m “doing nothing.” And that is the biggest shame. I am healing my relationship with my son after a year of trying to find a way to separate him from autism. A year WASTED. A year of me acting as a home therapist, never letting a moment pass without using it as a teaching opportunity. Could you imagine your whole life being prompted? Your true self never being accepted, let alone embraced and supported, by your own mother. If your brain is deemed “typical” then you are given the freedom to act however you please in a social setting, but with any type of neurodiversity, suddenly everyone is up in arms about your eye contact and appropriate topics of conversation. But you wouldn’t coach a typical kid constantly. If they didn’t feel like meeting someone’s gaze or if they fidgeted with a seat cushion, you would leave it. Well, I want to give my kid the same dignity. 

  • Lucas didn’t always stim. Ironically, ABA brought about much of his stimming. It wasn’t until he was in so much distress that we met some of his new habits. His brain was in stress mode and that manifested itself in outward bodily displays of stims. His stims constantly change. Right now (four years of age) he does a little vocal stimming when he’s excited, he also hand flaps, and he loves swiping on a phone or a tablet. Sometimes all he does is open an app for the intro jingle, hold it to his ear, break into a huge smile, then quickly closes the app to begin again. Most of his preferred videos have a lovely auditory input that he is looking for: the sound of a car revving, chimes in an intro video, the sound of clapping or water rushing. It’s not unusual to see him walking around with my phone pressed against his ear, just listening to a sound clip over and over. But this takes me to my next change of heart: stimming and screen time. I used to try and re-direct any and all signs of stimming. Not anymore. It all goes back to my sick need to “fix” my boy. Stimming makes him happy and content. They don’t cause him or anyone else harm. It no longer causes me anxiety to see him stimming away. I’ve noticed some impulsive muscular ticks that seem a bit persistent. Maybe a sign of Tourette’s but what would that really matter? I wouldn’t change him. He’s happy, healthy, and safe. 

I’ve also relinquished the screen time battle. Many autistic adults have explained that it’s calming and self regulating. Lucas will watch the same video on vehicles correlating to the ABCs until we ALL have them memorized, and then grab a toy and pretend to clear the ice and say “Z, zamboni” or grab an airplane and fly it in the air shouting “U, ultralight!” He even pointed to a train we were driving past and connected “L, locomotive!” Now he has a special interest in correlating the first letter of any word with that object. So even if he can’t for the word “tiger” he can point to it and say “T” and I can help him finish the word. All this to say, I no longer place boundaries on screen time. He’s stimming, he’s calming, he’s regulating, and he’s watching shows that are widening his vocabulary in a real way. I will take it away at bedtime, which is a good way for both of us to practice handling transitions.

  • A lot of parents who receive the news of an autism diagnosis relate it to grieving. Grieving the child you were expecting, but lost once they slapped this new label on him. I am guilty of this. SO guilty. I recall talking about this constantly when we were in the early, dark days. But after reading countless stories and accounts from actually autistic adults and teens who absolutely abhor this concept, I tried to adjust my lens. I wasted a lot of time “mourning” the loss of the son I had imagined. Now I’m just buried in the guilt that I feel when I remember those days. Why couldn’t I have just embraced the boy that I HAVE?! It’s hard to cut myself slack, but I think it’s so important to remind yourself, it’s ok to change your mind. You are allowed. I no longer grieve the boy that I had placed all those expectations on. Each day that I get to know the true Lucas, I rejoice because he is exactly who he is meant to be. And he’s thriving because I’ve embraced that too. I just took a detour on the way to acceptance.
  • This leads me to ableism. Something that I was unaware that I was guilty of until it was staring me in the face. I’ve already talked about some parallel ideas to this, but basically, I believed that the only way that Lucas could live a full, happy life, was if he was “indistinguishable from his neurotypical peers” (borrowed some ABA doctrine for that one). It terrified me that he may never talk, join a team, hold a job, live independently, get married, etc. But that was just an ableist and narrow-minded version of my inner dialogue. There is more than one way to be happy. I was so focused on him learning to speak and placed a lot of weight on that as a sign of successful personhood (ableist af). Now I am more open to an array of communication methods and we use a combo of signs and speech at home. He even tested out some AAC devices before we moved and that’s something I plan on talking about with his next speech therapist. We all have our own path, and Lucas is traveling on his journey with more confidence than I have. This is yet another example of me projecting my fears and insecurities onto him. Scared of anything deemed abnormal or atypical. What a load of ableism.
  • What I’m getting at, is a whole attitude adjustment. No more #autismmama now it’s #presumecompetence. We are no longer at war with autism, we celebrate Lucas’ differences, recognizing that a diverse society benefits EVERYONE; really showing the world that he is “different, not less.” 

I’ve heard from a host of autistic adults that they absolutely dread, hate, and cringe at the idea of April being Autism Awareness month. Everyone is aware of autism. We know it exists. Historically this month is full of “Light it up Blue” campaigns, puzzle pieces at every turn, and lots of harmful misinformation. These are all triggering for lots of the autistic community. Instead, they see Autism Acceptance month as the lesser evil. They have their own, less cringy, #redinstead, the gold or rainbow infinity symbol replaces the dreaded puzzle piece and they encourage “nothing about us, without us.” Autism Speaks has been one of the biggest offenders in this category, speaking over autistic voices and claiming to know best. And they get a lot of attention this month. So, my hope for this April is to share both from my experiences and to also highlight some work by actually autistic folks who have a better perspective. If you’ve read all this, THANK YOU! I rarely sit to write out all my thoughts like this, but when I do, I can’t stop.

A Few Autistic Voices:

Autistic Bride writes: “Autistic Bride originally began to directly refute the harmful myth that autistic people do not get married. When planning my own wedding, I naturally turned to Google for advice on how to make my special day ‘autistic friendly’. It wasn’t long before I realised, though, that the information simply did not exist… Autistics are beginning to reclaim the narrative and Autistic Bride aims to be a part of ending the stigma and misinformation about autistic people once and for all.

http://autisticbride.co.uk/about/

I have found her articles under the “All About Autism” tab extremely interesting.

NeuroClastic

ABA Therapists like to talk shop with me when they find out that I’m a dog trainer.

“I use the same principles in my work!” they always say eagerly. “It’s all operant conditioning, isn’t it?”

“Well,” I say, “a lot of it anyway.”

I love operant conditioning, and as a dog trainer, I’ve built my career around it.

I hold a Bachelor of Science in Psychology and I took every course on behaviour modification and conditioning that my university offered. I use it daily when training assistance dogs.

So you can imagine I was curious about ABA when I heard about it.

I started reading ABA websites, the principles and goals involved. The more I looked into ABA, the more I was exposed to the controversy around it. While parents whose children have received ABA sing its praises and describe it as the therapy that saved their child, the adult autistic community seems to feel differently.

I discovered that autistic adults consider it abusive, and many who were subjected to it as children claim to have been emotionally damaged.

Some preliminary studies even suggest that adults who received ABA as children are at an increased risk of suicide and PTSD.

And quite commonly on Twitter, I’ve seen people call ABA “dog training for children.”

When I see that, I tend to go on Twitter rants in reply to it, because from everything I have read and seen of ABA, it is NOT “dog training” for children.

…I would never treat a dog that way.

https://neuroclastic.com/2019/03/27/is-aba-really-dog-training-for-children-a-professional-dog-trainer-weighs-in/

This site is my go to for autistic news and it’s a publication BY autistic people. I shared this small section of an article that I have referred many a friend to regarding ABA.

The Autistic Advocate is another amazing resource. Highly recommend.

“This website incorporates my experiences as an Autistic person and an Autism Professional but, much more importantly, it is a place of collective stories, reflecting on the barriers facing Autistic people. It addresses the negative narrative of Autism, focusing on Autism as an Identity, as an acceptable Neurology, while at the same time addressing the aspects of being Autistic that can be disabling, both by society, but as a Disability too.”

https://theautisticadvocate.com/?fbclid=IwAR2Lub5ZzuOkTlHNvJf5r8jqWxn9RbLg3PA385i1Gdoq_oMpxmgIBXG1-zA

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