Monday, 04 March 2013
When Elijah was 4 years old he started an intensive ABA therapy program with a certain company, based out of California, that shall remain nameless. After relocating to Phoenix I was anxious to find therapy close to the program we had been receiving through the Regional Center in Irvine. Things in Arizona are very different than they are in California, where early intervention is strongly supported.
In Arizona, you are unlikely to receive any therapeutic services for your child unless they are at risk for institutionalization, and most kids under the age of 3 do not qualify for the state’s Medicaid program. You have a very small window between the ages of 3-4 to qualify for a decent program that includes some ABA, and not just habilitation hours (which is essentially childcare for kids with disabilities). So when this company offered to begin an ABA program for Elijah, and accept his Medicaid hours for a short period of time, I was excited to get started. I agreed to pay for all supervision hours once my State dollars ran out. We were willing to beg, borrow and steal if it meant that we could help our son. And we did, including taking out a $5K loan to pay for just one year of supervision. Quality ABA therapy is no joke — it costs a fortune. You have to be independently wealthy, have really good insurance, or learn to implement the strategies yourself if you want to get by. So, we jumped in with full-force, ready to “recover Elijah from autism” as we were told by his new program supervisor. She even showed us a movie made by their company founder with typical looking teenagers, who were once severely affected by autism. Their parents stated in their interviews that no amount of money was too great when it comes to curing your child of autism. Cure? I’m in!
As Elijah became immersed in his 30 hour a week program, and I schlepped him an hour each way to clinic meetings every other week, I told myself over and over again that after all was said and done he would be recovered. I never actually stopped to ask anyone what this term actually meant. It was said time and time again by his therapists, supervisors, assessors. Everyone was always so amazed at how “high-functioning” he was. Smiling and engaging. Social and talkative. Maybe he doesn’t really have autism people would say. Maybe he is just delayed. Recovery…it was such a beautiful idea and I begged everyone I knew to help us continue paying for his chance at a normal life.
In October of 2009, a little over a year after we first started with this new ABA provider, we met with the person who had originally evaluated Elijah at the start of his program. He spent about 20 minutes or so engaging with him, asking questions, observing. Then without hesitation he proclaimed that Elijah had officially recovered from autism and we should consider sealing all of his medical records, moving across town and enroll him in a new school where nobody would know about his previous life as a kid on the spectrum. I sat in shock, not sure if this was the best moment of my life or the worst. How was this possible? Sure, he looked pretty typical in most ways but then again, he was 5 years old. Don’t most kids in kindergarten look and act about the same? Yes, he could read at a fourth grade level thanks to hours of ABA teaching him to memorize sight words. And sure, he could attend for at least part of the school day. Peer relationships were somewhat forming. His sleeping and eating skills were normal. But if something seems too good to be true, it usually is.
In December of that year we threw a big party in the ABA company’s clinic room and celebrated Elijah’s recovery. I refused to believe that all of “this” was over. No more therapy? No more evaluations? No more worrying about delays and behaviors, and now he was going to just go about life like any other person? College and marriage? Sure! He’s recovered! I kept asking his supervisor, who I leaned on and trusted wholeheartedly, if Elijah was really no longer on the spectrum. She gave me the old Jenny McCarthy analogy, “It’s like he has been hit by a bus. You never act the same afterwards, but you can recover fully from your injuries.” Still wasn’t feeling this response in my mind. If autism is a neurobiological disorder that is considered to be in the mental health category, you don’t just recover from that. Depression, bi-polar disorder, ADHD, these things don’t just go away. I wasn’t convinced. “So, let’s have him reassessed then. We’ll arrange for a tester to come in and perform an ADOS,” she advised.
The ADOS, performed by a person working for the above-mentioned ABA provider came back as “not on the autism spectrum”. I tried to allow myself to feel elated and relieved. “You see?” she said, “Fully recovered!” I drove home in a daze. Maybe I just couldn’t allow myself to enjoy this moment because the last several years had been such a whirlwind of emotions. I just needed time to process. Against the recommendation of the company I did not move across town or seal Elijah’s medical records. My inner voice warned that doing this was foolish and reckless. Evaluations cost thousands of dollars. What if he needed support in the future? I am glad I listened to the person who really knows Elijah best, me.
After a year of no 1:1 ABA support Elijah started to fall apart. At five, he was like his peers in most ways, but by first grade he was starting to crack again. Skill acquisition is so much harder for him than his peers, and by the end of first grade those peer relationships he had worked so hard to build in kindergarten had fallen apart. He wasn’t cool enough for the boys that had once been his friends. Sleepovers and birthdays came and went without an invite. The worst day of his life was when the boy he idolized who lived down the street invited all of their friends over for a play date, that included a sleepover, he wasn’t invited. They all rode the bus together, chatting about the fun they were going to have while Elijah sat close by listening in, wondering why he hadn’t been included. Seeing his face when he stepped off the bus literally broke my heart. Yes, kids make and lose friends all the time, but this was different. He was an outcast because he couldn’t keep up with everyone else. He wasn’t getting the help he needed to maintain skills and was starting to fall behind — again. Recovered? I don’t think so.
As second grade started up in Irvine Elijah was a complete and utter disaster. He couldn’t keep up with the academics or expectations. He had been allowed to flounder in his previous Arizona school. His first grade teacher, sweet but young and inexperienced, had never taught a child with autism before. She would hold his hand and let him get out of work when he wasn’t in the mood. But his second grade teacher? She’s another story. With at least 30 years of teaching under her belt, this year has been tough, she’s always expecting his best. As she told me at the beginning of the school year, “She’s seen and had it all in her classroom.” Elijah is expected to rise to the occasion when it comes to classwork and behavior. He also has supports in place like never before and for the first time in his life, he has real friends. Friends that like him unconditionally even when they are other kids around. But what he also has is 1:1 ABA five days a week again after school. When he has a rough day, as all kids do, he has a therapist there to help him process and consider replacement behaviors.
The definition of recovered: return to a normal state of health, mind, or strength. Elijah was born with autism. He will never be “normal” and his brain will always process information differently than ours. He is strong, healthy, and in most ways typical in his presentation. But he will never be recovered. How can you recover from something that is a part of you, your brain, your soul? I don’t want or need him to be recovered. We need him to be happy and fulfilled. That’s all. It angers me that parents are told to seal their children’s records and pretend like their autism never existed. It did and does exist. And why is it not okay to be a person with autism? Why is it seen as the worst thing that could happen to someone? Some of the kindest, smartest, and most witty people I know have autism. People should think about how it makes individuals with autism feel when everyone is always speaking of it in such a negative way. Imagine being a person with autism and all you hear in the media and from other people is how we need to find a cure, erase autism, fix it. Elijah hears these things…if you are around my child, please don’t ever speak about autism in a negative way. In our house, it is nothing to be ashamed or afraid of.
Elijah will likely need 1:1 support indefinitely to continue hitting all milestones and closing any and all developmental gaps. He has autism. It’s not going away. It’s not recovered. And we don’t need it to be.