I recently watched the show Silo, and really liked it. But, it also got me thinking about the Silo-ification of the autism world. Silo-ification, as far as I'm aware, isn't a real word, but it helps with this point, and is honestly very much present in a lot of different areas. But, in the autism world, there are three silos I see, where most people fit into one of them, and dislike the other two.

Silo 1: Autism self advocates. They are autistic individuals that have usually had some really bad experiences due to their autism, and are working within the disability advocacy scene to try to improve autistic quality of life. Often times they have been harmed by medical model systems that sought to 'fix' them, and have since been pushing to build autistic community and push the social model of disability. I consider myself to exist pretty heavily in this silo.

Silo 2: Medical providers. ABA, Institutions, hospitals, and to some degree, school staff. They ultimately exist within the medical model of disability, and are often exposed to the most extreme behaviors, which they use whatever tools are at their disposal to address. Sometimes, they focus on more benign behaviors in an attempt to make a child more 'normal' and fit in better with their peers. I have extensive experience in this silo as well, both in the social skills and crisis field.

Silo 3: Parents. These are parents and family members of autistic individuals, and often come from a place of difficulty in raising an autistic child in an unsupportive world. They generally want what they think is best for their child, and often times carry a lot of trauma with them due to the challenges of raising a child on the spectrum. I am not a parent, but I have attended countless p2p groups as a guest and autistic adult to help provide the autistic perspective. There is probably the greatest variety in this field, as I have met parents that are some of the most supportive, amazing, and kind people in the world, and some that are downright abusive.

The problem is that these silos don't talk to each other in a meaningful way. The autism self advocates think the medical people are all soulless ABA providers that want to fix autism no matter the human cost, and that the parents are obsessed with the tragedy of autism. The medical providers think the autism advocates don't have any idea what it's like to work with kids with serious behaviors, and have all kinds of frustrations with parents. And the parents think the self advocates only want to focus on the high functioning, pleasant sides of autism, and think the medical providers are drowning them in bureaucracy.

None of these things are true. I have met so many autism advocates who are very familiar with the big behaviors, because they've been that kid that needed to wear a helmet. I've met medical providers who get it better than I do. I've met parents who are the most beautiful, kind people on the planet. And I try to build bridges between the silos, so people can get each other's perspective.

But the thing that allows me to do this is I've done 8 years in intensive services and crisis. I'm autistic myself, and have had all kinds of challenges growing up. I have worked closely in homes with families, for as much as 8 hours a week for multiple years in a wraparound program, doing deescalation work. Getting people with lived experience in multiple silos is how you learn the language needed to effectively communicate between silos, and the shared experience to navigate the choppy waters. And this is how we provide better quality of life for autistic people, which ultimately is the goal of everyone.

I talk a lot about the importance of lived experience, but I think the importance of multiple types of lived experience is essential. Some of the best people I've worked with are autistic providers with autistic kids. And we need more systems in place to enable these people to succeed.

Autistic adults offer pathways into understanding how to grow up as a healthy autistic person. Parents are some of the greatest allies autistic people can have, but they need and deserve support. Providers are essential, and often are gateways to a lot of really helpful resources. But, you can't do it alone.

Find the people with the lived experience, and elevate them. Center them. Let their real world experience drive your work, and let them guide the research. Otherwise, you're just perpetuating a broken system.