It is a busy time of year for many walks of faith. Today is Good Friday for the Christian community and only a week since Passover, a Jewish centerpiece of faith. The Hindu faith celebrates Ram Navami, a day of reflection. Spring is a time of renewal and rebirth, which many faiths celebrate this time of year.
It also happens to be Autism Awareness Month. Though people like me live with Autism year round, we have set up a month to pull together and get louder about living with Autism, in a way that can teach inclusiveness and acceptance to the typical population. Many of us work hard this time of year, flooding our calendars with speeches, presentations, counseling and talk panels, often as unpaid volunteers. We just want the world to get a renewed sense of understanding when it comes to disability.
This year, something has drastically changed. Perhaps it was happening slowly and was just too nuanced for me to see it coming. After many years of progress putting the Autistic Self-Advocate’s voice first, we have taken a giant step backwards. I have been bombarded by advertising for events featuring physicians and cure claim artists. Professors at universities not traditionally recognized as centers for Autism research have been making bold claims about the nature of autism and pushing more support for corrective therapies, rather than accommodating ones. We are returning to a “divide and conquer” approach as the primary voice in the American Autism movement.
As a result, the lesser known communities tethered to the world of Autism fill in the gaps, and the larger profit machines dominate the dialogue. This transfers ownership of the spotlight away from the Autistic Individual and onto the stigmas of the diagnosis itself. Autism becomes a thing.
Fear is often to blame for shifts away from open-minded progress and community involvement, and that is probably a factor here given the fear epidemic sweeping over the states. But there seems to be more happening here.
Prominent Autistic voices are aging out of the game, and no one is taking over the fight.
The benefit of interventions at age 3 for Autism is that a child is given a tool box early in life, potentially pushing maladaption to the sidelines. But the cure dialogue has removed most of the self-advocacy training from the tool box, and replaced it with behavior modification, mundane social skills training, and testing tools meant to find the savants among us, especially in maths and science.
We are arriving at a time where the first wave of “diagnosed at age 3” kids are approaching adulthood, and they have no idea what to do next. Since these families were promised a cure, to no avail, they have arrived at adulthood completely unprepared. This is not the fault of the parents. They live and breathe autism with their child every step of the way, struggling to do what they think might be right, and worried they have already done so. They want to see their child thrive, and have been told that is not possible. So they did what the doctors, and therapists told them.
The average hours an Autistic child spends in therapy is between 15 and 40 hours a week, which is based on recommendations from doctors and therapists. With hundreds of therapies to chose from, parents bounce from developmental to medical to behavioural interventions addressing what ever displayed characteristic is most invasive to fitting the child into the current societal and educational models.
We treat the behviour of autism. We don’t prepare the individual for living with autism.
Imagine not teaching a child in a wheelchair how to live in a chair because one day there might be a cure. If we treated the behaviour of Paraplegia as each situation arises, but never teaching the person with paraplegia to adapt, then they might be left helpless when they must hop a curb where there is no chair ramp. This then feeds into the concept that the paraplegic person is born wrong, and must be cured or corrected to be loved and accepted.
If anyone were to focus on cure only therapies for the paraplegic today, it would be considered cruel. Yet it is considered therapy when the person has a cognitive disability like Autism.
So where are the upcoming self-advocates?
There are a few, screaming over the roar of the crowd, and they are exhausted. These few managed to develop self-advocacy skills despite lack of nurture in their environment, but they have their hard work deflated by being labeled as God-given. They must have some inborn gift to be acknowledged.
I completely respect those of faith who feel their abilities are bestowed upon them by a higher being. Faith has value in societies for providing peace and solace for those who seek it, but we must strike a balance here. The god-given talent label is taking place of the Savant label, again pushing the sweat and tears progress of Autistic people into the dark, and leaving us to believe only those chosen by DNA or god can overcome the limitations of Autism.
Why do I have to thank god? My work as an advocate did not come from god, or from some special genius I happen to be selected to have. I am not a Savant and I have not overcome the difficulties of Autism through hundreds of hours of behavioural, medical or developmental therapies.
I am not a miracle.
I am an Autistic person who was allowed to fail, fall, and try what I felt worked for me. My parents allowed me the freedom of working things out in my own time, loved me for who I am, and always PRESUMED competence. I wasn’t pushed, I was bumped. I wasn’t told I was broken, I was told I was unique. And when I was wrong, I was shown how to learn from my errors.
Therapy was directed by me, with my ideas at the center. My therapist was there for me to talk about my troubles, help me organize information, and teach me emotions that allowed me to understand myself first, and others second. Yes, in this case the me first approach allowed me to heal so I could find a way to love others the way I always had, without being destroyed by the poison arrows I couldn’t see.
There is no static therapy for Autism, because no human is static.
We grow and we evolve at the same time. What works today may not work tomorrow, and so my first life lesson was teaching Phoenix (my autism) to understand and accept change. Behavioral therapy alone teaches us to be pattern breakers, where as a fluid approach born of a mixed bag of supports teaches us to be pattern creators. We become more complex, more detailed, and eventually more independent. I got to explore my Autism highlighting the powers, and overcoming the struggles. And that which I cannot overcome, I have learned to carry on my own.
Let me fall, so I can be free.
I love this Laura!! So well put.