In 2014, Love & Autism was imagined due to my own yearnings to learn.
At that point, I was done with the conference offerings within our field. Many of the programs felt tiresome in the way they approached treatment and limited in their views of what it means to be autistic. It was in this environment that I decided I would create an event to advance the field; one where love, respect, and humanistic practices were at the core of discussions about individuals with autism.
Our first speakers at Love & Autism took the stage to reject the dominant discourse within the autism world. Thankfully, world-renowned self advocates like Donna Williams and experts like Daniel Siegel united with us to put on our inaugural event. The learning messages within our first Love & Autism still ring true for me.
Fast forward three years and we are at it again. This year, I feel such an urgency to share our message within and beyond our autism community.
Our Horrific Track Record of Treatment
Steve Silberman, a 2016 speaker and the author of NeuroTribes, has a strong call to action when he shares his history of autism through a social justice lens. Among other things, Silberman details horrific abuses masquerading as treatment taken from the, now infamous, 1965 article from Life Magazine.
Autism treatment of the past was outwardly disgusting and could have lifelong consequences. In the article, Lovaas’s ABA was described and pictured as a brutal method for “utterly withdrawn children whose minds are sealed against all human contact and whose uncontrolled madness had turned their homes into hells.” Silberman brings to light heart-wrenching, disgusting, graphic and moving tales of life-altering abuse!
Humanistic and respectful treatment continues to be aspirational for children on the spectrum and their parents seeking support as disgusting abuses still occur every day within our current culture.
For me, reading Steve Silberman’s book was like a metaphorical cattle prod (an approach used on autistic children) to take action.
Our Deplorable Language
Less insidious, but concerning none the less, are the ways that leaders in our field choose to describe treatment. In doing a really quick web-search of “leaders in the field”, I found that they commonly described success for the ASD child as “now attends second grade in a regular education.” The description of “regular” as a category of education is sub-humanizing, suggesting alternative or personalized setting are “irregular.”
The messaging is clear. Being “normal” or “regular” is at the forefront of treatment. This messaging is deplorable at best.
The micro-aggressive messages that people with autism are broken and deficient dominate the internet. On one site, treatment gains are defined as other children “getting the child with autism to play with minimal support from her aide.” The language here is explicitly discriminatory. How is it that the child with autism is not described as joining her peers of her own volition? For me, the real answer is related to the viewpoint that many still have of those that identify, or have been identified, as on the autism spectrum. There is coercion in the aspect of “get.” We need to drop the notion of getting people with autism to “do” specific skills in order to act “normal.”
At Love & Autism, we operate from a position of respect first instead of people being simply “targets” of intervention.
Recovery Shouldn’t be the Goal
On other websites, the concept of “recovery” seems to be the epitome of success. But for those of us at Love & Autism, we believe that to speak of recovery, we diminish possibilities of the unique neurological wiring associated with autism.
I reject this notion that matching me, and my supposed ‘typical development’ is somehow a hallmark of success. Rather, I support a personalized path towards living from a place of purpose, creating meaning, and always supporting a growth mindset where resiliency and grit are the focus.
The spectrum is a constellation of symptoms—those that are ego-syntonic and ego-dystonic. Recovery discussions are not what we stand for at Love & Autism. Autism is not something people grow out of. It’s not something where with the “right” interventions at the “right” time, people are cured of their autistic neurological wiring. When we engage in recovery as the gold standard of treatment success, we are saying the being autistic and not recovering is something shameful. This is not our truth at Love & Autism.
Our Response: Listen & Share the Stage!
So…what do we do when we reject the status quo? When we stand for something different?
Maybe we listen.
At Love & Autism, that is one of our fundamental tenants. We listen to autistic voices. We position those that are diagnosed on the autism spectrum as leaders of our conference that are not there to simply inspire, but who create transformational shifts within our field. Each narrative may include experiences of challenge to gifts.
We are not here to sugar-coat any aspect of neuro-divergent living. In fact we invite our speakers to be “raw, honest, real” allowing each to sort through what that exactly means. We believe this invites a more rounded discussion of what it means to Live & Love with autism.
We realize that discussions related to autism include first and foremost autistic self-advocates, but they also include allied voices. We call this “a seat at our table.” When hosting a dinner partner, we don’t rank our guest, but we provide them a seat. This is what we attempt to do at Love & Autism. Come join our table—Self advocates, parents, clinicians, researchers, newly diagnosed to veteran voices—and those that check more than one box.
Our Response: A Conference Done Differently
We’ve even rejected the hierarchical structures of most conference such as the notation of one speaker gives the keynote. For us, every voice is important, every voice has value. Not every story may resonate with your personal experience, but our goal at Love & Autism is to invite you to reflect, respond, and provide you with an opportunity to dig deep. With this two days of Love & Learning, you are encouraged to grow in ways that conference speaking points will never be able to quantify.
I know that our line-up is awesome, but we will not represent every aspect of being autistic. This is not a rejection of voices, but simply reveals what an impossible task it is to cover the diversity of this label of autism spectrum. Our line up is curated to reflect those that we feel will move ‘other’ to a place of deeper love and respect within our shared global community.
We continue to be an invitational only conference with every speaker given an honorarium. We are setting a standard of conferences. We are non-exploitation based, providing gainful wages for those on the autism spectrum. We want to continue to invite a diversity of speakers to grace our stage.
Join the Revolution
After 16 years in the autism field, I wish I could claim expert status. But alas, I’m simply not there. Maybe there isn’t even an endpoint where were we reach this type of status. Truly (shout out to Jeremy Sicile-Kira because I love this word too), my life’s mission is to find circles of people that want to change the world’s view of autism so that more opportunity exists for those living and loving on the autism spectrum.
At Love & Autism, we are a group that love learning, love personal growth and most importantly we love Love. If that sounds like you, I’ll see you at Love & Autism 2016.