• Darcy Reed

Too proud for a cure?

To understand those of us with autism one must first give a lot of energy to actually living with us. Everything else is just guesswork. None of us are the same. There’s that saying, if you’ve met one autistic, you’ve met one autistic. We may be similar but not the same as others, just like you or anyone else. No one is ever exactly replicated in another person. We are all unique.


Those of us who celebrate autism are celebrating like rebels in the streets of the normal path. That is certainly worth autistic pride -- to reject normal values and behaviors which really aren’t always that much better than ours, just different. Like so many things extremely different, we are a mystery to the world and why not?

Yet as our numbers increase, so do the concerns. What people seem to overlook so much in the world of autism (such as mine which is said to be severe,) is that the number of caregivers is not increasing. Let’s just be real, okay?


You can’t ask what causes autism without getting in deep trouble with the outspoken crowd of autistics who have better lives. They hate parents for wanting prevention or cures, but they are not relying on a caregiver to function. They do so independently and don’t want to be associated with those of us who do need caregivers. It’s like any human group, separating itself according to the haves and have-nots.


I have heard that perhaps a cure is over the horizon. I have to say that I would appreciate that. It would be really cool to speak with my voice and it would be neat to not need a caregiver. I believe science has found genetic implications related to our immune systems and that is one reason we are so sensitive to toxins. I would like a better immune system, thank you. Exciting developments are emerging in the area of the brain/gut connection, as well.


Now, I know that many of us do have extra cool abilities and I believe I do have a writing gift. I think I can keep that and still get well. So, for me, I would eat that fecal pill to change my gut bacteria and brain if that’s what works. I just would. I’m not an evolutionary link to a brave new future. I can’t even be a mom I’m so disabled. What would happen if we did take over the world? Would those happy aspies be our caregivers? Would we just love ourselves to death with fantasies about our super powers? I don’t think so.


Underlying this divergence of opinion on all sides is a sense of needing to honor individuals for who they are, and underlying that is the deep need for equality and respect. I understand autism pride. I just don’t understand the lack of scientific curiosity. I find that insulting.




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