There is Eloquence in Darkness

I recently received an email from a close autistic friend of mine. It was neither a plea for help nor a pity party, but more a cry for justice and understanding.

The email read:

I can't remember a time in my life when I wasn't overwhelmed. I can "work" (meaning being employed) but not be able to maintain relationships or self-care. Or I can maintain relationships but at the expense of working and self-care, or some other combo that is not all-three-things.

Social Security won't pay for me to live while I attend to the other stuff because I've worked in the past.

Social programs won't provide me with an assistant, only with "skill trainers," which doesn't actually help me.

So I'm stuck just attending to whatever the crisis of the moment is. I do that until I crash out and spend a few months catatonic. Then it starts again.

My meltdowns--or shutdowns--are an absence of feeling. They are a fight-or-flight response to a situation that simply cannot be coped with on any level.

One of the reasons why I'm so passionate about advocacy is because I don't want autistic people who come after me to live like I do.

My friend works himself to the bone. Envisioning my friend in a catatonic state is painful to me because not only is he dear to me, but I depend on him for support and guidance. Unfortunately, I cannot help my friend because his needs require service at a higher level than what I can provide. That noted, my friend neither needs pity nor does he wish to be cured. He simply needs greater public understanding, positive and empowering support, and meaningful legal change.

What upsets me most, is that my friend is just one of thousands of autistics dealing with the above issues in life. We wake up and perform tasks such as working, blogging, advocating, attending conferences, facilitating meetings, and forging contacts. Then we go to sleep--late--only to wake up and do it all over again.

The changes we have seen to fruition, in unison with current atrocities, provide our fuel. This is but a small first course in the larger feast ahead.

How does one respond to such an honest baring of the soul? Though my friend's world is at times dark and confusing, it lacks not of eloquence.

My response to my friend:

It seems there are no safe choices, only different ones. We all have challenges--autistic or not--and that's okay. It's okay because it has to be. I often remind myself that in every end, there is also a beginning.

Your orchestration of thunder is not conducted for nothing. There is an uneven distribution of power at play. I often feel as if I am constructing a house of cards, of which one wrong move will send the whole structure tumbling.

As Melissa Barton wrote, "What a war. Please send reinforcements."

A large percentage of autistic individuals are in need of appropriate education, acceptance and integration, opportunity, legal protection, housing, employment, and quality health care. We are thankful to those who join hands with us.

Autism: how one small word harbors such current.