xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: I am not an autism expert...

Wednesday, February 13, 2013

I am not an autism expert...

.... I am a Child 1 expert.

I am well versed in my child's strengths, weaknesses and quirks. I can tell you exactly how his autism manifests and at what age he started to show signs. I can speak with 100% certainty about his Early Intervention, the ABA program we had at home for 3 years and how his experience has been with public education so far. I can tell you what has worked, what has not worked and what I would do again. I can make recommendations about things I think might help you, and I can help you find the information they need to get appropriate interventions. I will quote to you from our IEP if I think it might be useful information, and I will help you find phone numbers for district staff if you need it.

None of this make me an "expert" in autism, though. Like I said, all this does it make me an expert in my own child and my own experiences, and I am certainly not unique in this. Life is a learning process, as we grow and change our feelings and opinions will change, as well. None of us are mind readers (as far as I know), none of us are superheroes, and none of us are perfect. However, in my opinion, we all have something we bring to the table of life, and all of our voices are important, regardless of who we are and how we have lived.

I consulted with Flannery who blogs at The Connor Chronicles and who is autistic, herself, and she had this to say:
Our unique circumstances and experiences are valid and valuable to advocacy. While we can't speak to someone else's experience, we should each have a place at the table and an opportunity for our voices to be heard. While no one person or group is an "autism expert", together our collective knowledge can be used to help everyone on the spectrum to be seen as equal.
My point? My point is that I would be hesitant to trust the words of any person or blog or organization or Facebook page who makes a claim to be an expert in anything as they, too, are experts only with themselves. Nobody can speak for somebody else's life, they can only speak for their own.



Comments (13)

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This is a very well thought out post, Jill. I agree that we are all only experts in our own lives. And that the table is really much bigger than some people think, and there are many, many chairs (or spaces for those who prefer to stand) for people to be able to add to the conversation going on.
In my most recent meeting with the fuckface school district, I explained to them, "I know you've been working with her for 5 months now, but I'm actually a Little Bird expert. You're gonna wanna learn a thing or two from me."
2 replies · active 635 weeks ago
Damn straight, sister!
Excellent, Dani.
Amen sista! A-MEN *shakes with the spirit*
Love this. Wish everyone understood this. One can only hope.
Yes- exactly. Thank you for this Jill!
Yes. There's a terrible intellectual arrogance that comes from assuming you have all the answers when it comes to such a broad spectrum of human experience.
STANDS UP AND APPLUADES!!! Yes, we are only experts on our own situations, not on others - as a community we become stronger by sharing our experiences and learning from each other. Thank you, thank you, thank you for speaking the truth!
1 reply · active 635 weeks ago
thank you so much for saying that :)
Yes, yes and YES. Individuality of person and experience is too often ignored in favor of blanket assertions and decrees. LOVE this post.
Since my son is now 17, we only have one more annual IEP meeting on the horizon. Over the years, I've learned a lot about the hoops that one must jump through to get services, and I've become quite the evangelist for The Boy (who isn't all that appreciative of my help anymore).

Instead of getting ready to hang up my advocate hat, I recently completed Parent Mentor training for my state, and hope to offer hope and suggestions to other parents who are navigating the rocky shores of IEPland.

But I'll never be an expert on autism or bipolar disorder - or anything, for that matter.
Very well said my dear!

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