Recovery. Outside of the words ‘vaccine,’ and ‘cure,’ the word ‘recovery’ is probably the most controversial word in the autism vernacular. It’s a debatable word and concept that can easily send listservs into overdrive and in need of serious moderation. I have witnessed online debates over recovery where people actually come to verbal blows.
Recovery in the autism community can be an inflamed, sore spot because many feel those with autism have nothing to recover from. You have parents and activists who take issue with the very thought of recovery, particularly those within the Neurodiversity Movement who advocate for respect, justice, and inclusion of persons who are not neurotypical. Just the mention of autism and recovery in the same sentence sounds offensive to even adults on the spectrum whose needs often get overlooked when organizations focus more on Early Intervention for youngsters. They feel the word implies that they’re afflicted with some awful disease, rendering them in need of fixing. Last, some parents go as far as asking: “If you feel your child needs recovering, then how can you truly love and appreciate that child?”
Now, I’m not a parent who is going to jump into the recovery debate one way or the other because I’ve learned my lesson about doing that. Plus, I feel there needs to be room in our community for differences of opinions. But, I do know many parents who support recovery. And, I’ve met children who have recovered to the point where they are indistinguishable from their neurotypical peers. Yet, there are elements of the Neurodiversity philosophy that I support, while not always agreeing with the movement 100%. I totally support that people with autism should be treated with respect. And, I unequivocally support that society needs a better understanding of the spectrum in order to embrace our community.
I believe my son is on the road to recovery. His journey is not over yet, but he’s on his way. And, the wisdom from my old, African-American grandmother helped get him there. So, I just want to clarify what I mean when I use the word ‘recovery’ on my blog so I don’t offend anyone. I am taking into consideration the entire spectrum and speaking about recovery from the symptoms that cause illness, harm, pain, impairment, limited mobility, incapacitation, and disability due to an Autism Spectrum Diagnosis. And, I am also taking into consideration that autism is a medical condition that needs professional intervention, sometimes for a lifetime.
Now that I got that out of the way, I can get down to the nitty-gritty of this post and its title. Something has been bugging me for a few days and I want to get it off my chest. As you can tell from my blog, I keep my son quite active. I think it’s important that our children stay active and that we make them feel a part of the world because they are. Another reason why I keep him active is to help him manage his sensory integration issues in public, plus build upon his social skills — both of which he struggles with every day.
Well, I heard it through the grapevine — again — that a parent in my autism community views parents like myself as being overly involved, over-parenting, and pushy. Normally, I dismiss this type of gossip, but not this time. I thought about it for a minute and in some ways, I can see how some people can form that impression, especially considering that my son is probably more active than the average child with autism due to his level of functionality. But, let me tell you something and make no bones about it — he neither started there nor did he get there overnight. It has taken nearly five, long, hard years of intensive intervention to get him to where he is today.
I also feel that my approach to helping my son has a great deal to do with the pearls of wisdom given to me by my African-American grandmother years ago. I speak only for myself not an entire race of people, but I do believe in my situation that my culture and the struggles I had in my own childhood have played a monumental role in how I approached autism intervention.
Back in the 1970s when I was a girl, many times I found myself being the only African-American kid in the mix. Including myself, there were only three African-American students in our entire school when we moved from Oakland, CA to the suburbs of the San Ramon Valley…a mostly rural area back then, dotted with new housing developments along its rolling hills. And, there were no African Americans when we joined sports and other activities. My grandmother, having come out of the Jim Crow south, knew we were going to have some challenges — even though she saw more opportunity for us as well because the schools were top-notch. So, she sat me down (with my sister) and gave me her pearls of wisdom…something I think many African-American grandparents did back then. She said:
“You’re going to have to work twice as hard to be considered just as good. You’re going to have to work twice as hard to be recognized. You’re going to have to work twice as hard for success. Because you’re coming at this from a different angle.”
In my case, the angle was me being an African-American kid in an all-White environment. In my son’s case, the angle is autism and coming up in a society that has a lot to learn about people with neurological idiosyncrasies.
This brings me back to the word ‘recovery.’ After doing research and consulting with the best in our area on autism, it was clear that my son’s road to recovery was not going to be easy. You see, Autism Intervention is work. It is not a walk in the park. Our kids spend hours every week for years in Occupational Therapy, Speech Therapy, Physical Therapy, Vision Therapy, Sensory Integration Therapy, Applied Behavioral Analysis, Floortime, TEACCH – and that’s only to name a few. Then, there’s the social skills aspect and all of the programs, play dates, and activities needed to assist our kids with social interaction. I knew from the get-go that my son was going to have to work to recover from his autism symptoms, especially if the end goal was independence and self-sufficiency.
Just like my grandmother said I would have to work twice as hard, he, too, would have to work twice as hard (even harder) than a typical child to get to where he needed to go. He’d have to work twice as hard on his physical, psychological, and developmental impairments to move forward. He’d have to work twice as hard as a typical child to be recognized by society. He’d have to work twice as hard as a typical child for success. And, I was right! That little child in his short life has had to work harder than most adults could ever imagine just to get to mainstream 3rd grade and to do the basic things that many human beings take for granted like talking.
So, as I reflect upon the gossip that got me thinking about all of this, I’m no longer bothered by comments from parents who think they knew how to raise my child better than I do. Because they don’t understand the “angle” I’m coming from. What they view as being overly-involved is me staying on top of his autism intervention and working his programs the way I’m supposed to so that he can go out into that world and be somebody! I’m workin’ it, baby, and so is my son all thanks to those loving, pearls of wisdom. And, even though my grandmother passed away 26 years ago, she sits on my shoulder like a guardian angel seeing us through this autism journey. Her pearls of wisdom have been the best autism advice I’ve ever gotten.
Thank you, mama. Rest In Peace.