The Awesome Power of Caregivers

Don’t worry my friends who enjoy the more frivolous commentary of my blog – I’ll return to my regularly scheduled whimsy soon. At the moment, I have picked up my puzzle-shaped coat-of-arms and joined my brothers and sisters on our quest to spread autism awareness throughout the land. We’re the Knights of the Spectrum Roundtable, and I can assure you, that table is a perfect 360 degrees; no lopsided ovoids for us.

I’ll be hopping analogies, metaphors, and all types of figurative language today, so I hope you’ve eaten your breakfast. To continue: Parenting, I have been told, is tricky. Parenting a kiddo with autism is tricky, with a capital T, fire shooting out of its mouth, spoken in a foreign language, looking at the world below from the precipice of a cliff with angry mobs prodding our backs, while other people tell us to have faith and climb on down, but we’re afraid of heights.

Fear or not, we have to make our way down that cliff. There are probably those of you who want me to provide a lovely image of making my way up a hill and standing on top of the mountain all victorious, a Rocky of Autism Mommahood. That image doesn’t work for me. I don’t mind an uphill battle; I don’t mind hard work, sweat and tears. I mind failing, I mind falling, I mind crashing, so my mental model is all about the fall.

I am not at war with autism. I refuse to capitalize it unless it’s part of a title, but that’s just my way of showing a word who’s boss. I am not tired of fighting my way through the educational system I’m proud to be a part of. A huge part of my experience as a warrior on behalf of people with special needs has been in reframing other people’s ideas and assumptions anyway.

We, the warriors, learn how to rappel down the developmental cliffs with the people we care for, providing a safe landing on firmer ground. We learn how to tell a buckethead practitioner from 20 paces away, and we can stop a patronizing discussion before it begins. We also know how to ignore the helpful commentary of strangers while our loved ones are melting down. We develop thick skins; most importantly, at some point we learn how to recognize that we didn’t tame the dragon, we harnessed our own.

Our best weapon is a combination of knowledge, endurance, and practice. Humor helps, of course, hence the faulty allusions to either Camelot or the Game of Thrones, depending on how old you are. The battles are emotionally bloody; we fight to secure a future in which our children and loved ones can be productive, happy. We have every reason to think that they should be, and I know it’s worth a cliff dive or two (metaphorically, please) to ensure that all people have access to their futures. Did I tell you anything new about autism? Nope. I hope, however, that we all understand that warrior-parents and caregivers, their teachers, therapists and service providers, are a formidable army of awesome and we need to continue wielding our power so that all people have access to early intervention, quality care, and the necessary supports to be successful.

 

Autism Awareness – a month of ruminations

April is Autism Awareness Month, a month of information and fellowship I have often viewed with a combination of dread and a fist-bump. Yep, the fist-bump of dread, that sounds about right. I am a gentle warrior advocating on behalf of those who have autism spectrum disorders, but it is important to note that the ‘gentle’ part of my warrior-ness in no way implies I’m not capable of breaking out a can of rhetorical whoop-ass if I need to.

I am told that “everyone” already understands what autism is and that I should concentrate my energy elsewhere. “Everyone” apparently lives in other communities because my own is still riddled with people who don’t speak the language of autism awareness. I am going to break down autism as I have come to understand it, with love and a sense of humor during this month. I have one goal: that “everyone”, whether you’re tired of people talking about autism, your life has been touched with autism, or you are on the spectrum yourself, will walk away thinking.

We begin: my own adventures in autism awareness are humble. I did not study autism and receive a Ph.D. in diagnosis and intervention. I am the proud mom of a person with autism, so I have 21 years of field experience. I am also a teacher with 11 years of experience working in exceptional student education. I have been hanging around with autism for a longish time. I do not, however, have autism myself, so anything I can communicate to you is not based on the essential, experiential component of living in the head of someone on the spectrum. We are social scientists, all of us, prone to classify and subdivide people based on certain characteristics, but no matter how much we read or how successful our interventions are (and many are pretty great), we don’t have a base-level understanding of living on the spectrum. That only comes from the individuals who live with autism themselves.

Thank goodness for Temple Grandin, Daniel Tammet, Nedi Safa and Matt, John Eder Robison and others who have shared their perspectives on growing up with autism. They are my heroes. Please read anything written by them for a factual, experiential understanding about autism spectrum disorders. Please also inform yourself . Go to www.cdc.gov, or www.nimh.gov, for a sense of autism’s pervasiveness, its cost (both economic and emotional), its pathology and etiology: these are the numbers and non sequitors to share when you’re discussing autism in a more philosophical, less living-it-and-doing-the-day kind of approach.

I am more of a do-the-day kind of person. In my research, case studies, and intervention work, I read a lot. A whole heckofalot. I love fiction as much as non, and one of my favorite books with a main character who has autism is Elizabeth Moon’s Speed of Dark. She explores a world in which an experimental treatment for autism exists. The main character, Lou, has autism and has been offered this experimental treatment. He has to then decide what that means for him. The book delves into a question so many of us can ignore in our daily lives: if you could take away your disability, would you?

That’s a tricky question, one that can crash into a horrifying discussion of eugenics. I keep my blogs short on purpose, so I can only recommend you read the book. To offer my answer to that question, many of us who love and/or teach people with autism work ceaselessly for greater understanding, better interventions, effective supports for people on the spectrum. That does not imply that we’re looking to get rid of a set of characteristics. As Temple Grandin and others point out, autism also has its strengths. We spend a huge amount of energy addressing the deficits and more compelling differences of autism while also devoting the needed time building skills, challenging and motivating individuals achieve their potential. That is no less important than challenging, building skills and motivating, our typically developing brothers and sisters – we just sometimes forget to put on both interventional pant legs and end up falling on our keisters.

Autism Awareness Month, then, is a great month to spend some time thinking about that which makes us human. Autism is a neurodevelopmental difference, and neurodiversity is the stuff of life. I can’t imagine a world in which we’re all the same, and I wouldn’t presume to be the one to judge the quality of someone else’s life based on a set of criteria. We all have the right to live our lives with dignity and a giggle or two, and the obligation to respect others’ right to the same. This is me, “lighting it up blue” during the month of April, with fist bumps to all.