I needed this post today. I had a similar experience this week with an advocate who I respect and does good work but who is now going after another advocate who is also doing good but different work. Claiming to know the “way” and taking one autistic persons vantage point and claiming it’s a truth for everyone. I reached out with a respectful email - no reply. Sigh. Here’s the thing, when we declare “the way” we turn ourselves into the kind of interventionists we loathe. We become overly invested in our position and can cause harm & trauma. Autism & all it’s assorted co-occurring conditions are frankly not fully understood. Neuroscience & genetics aren’t there yet. Lived experiences are great but have so much variance and intersections - it’s hard to compare those experiences and support needs. I firmly believe we need to be open to evolving support paths, changeable options and support that’s wholistic to the family.
My child, like Aiden, was dx age 1. Later my older child at 4. And now we know the adults are ND too. We have just been put through the ringer with interventions. It’s affected our whole family. It’s often been hurtful, exhausting, lonely and caused us to lose touch with ourselves. Lately I’ve been circling the wagons, careful who we let in and really asking if it’s worth it. Both from the medical community and autistic community.
I really appreciate this Tiff. First, I am so incredibly sorry and angry that this happened to you. This "advocacy space" has become so painful. That is so intrusive the way people felt freedom to make all of these comments. When Neurodivergent-affirming becomes boiled down to all or nothing stances on big issues like ABA, etc it looses it's complexity. And when it looses nuance and complexity it stops being affirming to so many identities (typically the most marginalized). I'll be holding you and your family in mind these next 12 weeks, hoping it brings some relief and restoration to your son's exhaustion.
I needed this post today. I had a similar experience this week with an advocate who I respect and does good work but who is now going after another advocate who is also doing good but different work. Claiming to know the “way” and taking one autistic persons vantage point and claiming it’s a truth for everyone. I reached out with a respectful email - no reply. Sigh. Here’s the thing, when we declare “the way” we turn ourselves into the kind of interventionists we loathe. We become overly invested in our position and can cause harm & trauma. Autism & all it’s assorted co-occurring conditions are frankly not fully understood. Neuroscience & genetics aren’t there yet. Lived experiences are great but have so much variance and intersections - it’s hard to compare those experiences and support needs. I firmly believe we need to be open to evolving support paths, changeable options and support that’s wholistic to the family.
My child, like Aiden, was dx age 1. Later my older child at 4. And now we know the adults are ND too. We have just been put through the ringer with interventions. It’s affected our whole family. It’s often been hurtful, exhausting, lonely and caused us to lose touch with ourselves. Lately I’ve been circling the wagons, careful who we let in and really asking if it’s worth it. Both from the medical community and autistic community.
As always - thank you for your voice & story.
That paragraph at the end on where the focus should be … precisely precisely that. I so appreciate how you laid that out.
Do what is right for your family, you know your children.
I really appreciate this Tiff. First, I am so incredibly sorry and angry that this happened to you. This "advocacy space" has become so painful. That is so intrusive the way people felt freedom to make all of these comments. When Neurodivergent-affirming becomes boiled down to all or nothing stances on big issues like ABA, etc it looses it's complexity. And when it looses nuance and complexity it stops being affirming to so many identities (typically the most marginalized). I'll be holding you and your family in mind these next 12 weeks, hoping it brings some relief and restoration to your son's exhaustion.