Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Uncategorized

Early Intervention

taleidoscope

[image description: a honeycomb pattern of clouds in a blue sky, ringed by the green of oak leaves and grass. An image taken outside a McDonald’s restaurant, holding a taleidoscope against the camera lens.  A taleidoscope is a type of kaleidoscope that reflects the world down a tube of mirrors instead of displaying a collection of bits of colored glass or plastic that form shifting patterns as they move around in their mirror tunnel.]


This is a re-post of an essay that originally appeared on my old blog on September 3, 2015. It is reproduced here without edits or changes from the original form.


We were discussing early diagnosis/identification and early intervention/therapy over on the Facebook forum for this blog and a reader, Megen Porter, made a deeply insightful comment: “It’s almost like early identification is important so you can intervene on yourself as a parent.”

What a brilliant way to put it, Megen! Thank you!

The standard meaning of the phrase early intervention is to jump in with hours and hours of therapy to try to get an Autistic child to be “indistinguishable from peers” as quickly and as thoroughly as possible. This means extinguishing Autistic behaviors, even absolutely harmless ones that are beneficial to the Autistic person but embarrassing or off-putting to onlookers, the classic example of which is hand flapping.

But Megen put a lovely spin on things by pointing out that it is the parents who need the early intervention. When autism can be recognized and identified early, the parents have a golden opportunity to begin working to understand the child they actually have. They can now learn about autistic neurology and stop interpreting their child through the wrong lens. Their child will be happier, healthier, and feel more love and acceptance for who they truly are once their parents’ fear and confusion has cleared away. Parents can avoid shaming their child for being different and can come to understand that their job is not to try to shape their child like a lump of wet clay but to celebrate who their child is and work from there.

Of course there will be some kinds of specialized education. All children get education at home and at school, and identifying children who are neurodivergent in various ways means that those children can get more targeted education that works with their brain, not against it. Autistic children might need extra mentoring in coping with processing sensory input. All children need to learn how to self-soothe — none are born knowing that. Autistic children often need extra mentoring in that area. Later, it might be extra important that an Autistic child gets academic directions in a written form in addition to or instead of a spoken form. Or an Autistic child might need help with finding a method of communication that works well for that child since speaking isn’t always the optimal choice. These kinds of interventions are very important.

But the most important early intervention — and the earlier the better! — is for the parents. Let’s all work to help parents of newly-identified Autistic children with their early intervention program. What can you do to help?

When someone tells you that their child was just diagnosed, don’t say “I’m sorry.” Say, “that’s great! Now you know what is going on. I’m so glad you have that information.” If you’re a hugger and they’re a hug-liking person, add a hug in there. Be friendly, encouraging, upbeat. If they are telling you this because your child is Autistic, there are other things you can say as well. Talk about the ways that it was helpful to learn about your child’s autism. The newly-aware parent is probably feeling overwhelmed with all kinds of emotions. Emphasize what is good about getting the diagnosis to help that parent get a good start on this new phase of their life. Remind them that their child is still the beautiful, magical, wonderful child he or she has always been. Let them know that the only thing that has changed is that there is more information now, to help them understand their child better.

We should all be as supportive of one another as we possibly can — parents, children, adult Autistics, professionals, everyone. But let’s all try to be extra supportive of the newly-aware parents among us. If you are the parent of Autistic children, don’t white-wash your life but do spend a little extra time talking about the good things. Spend a little extra time talking about great solutions you found that made your child’s life better and, by extension, the whole family happier.

Remind the newly-aware parent that *all* parenting is challenging. This is especially important, because parents whose children are not Autistic cannot say something like that. A parent who does not have an Autistic child is offensive if they remind others that all parenting is challenging because they are not speaking from the same set of experiences, but if you are parenting an Autistic child, please do take the time, when it feels appropriate to you, to remind others that all parenting is challenging because it help to put the struggles of families with Autistic members into perspective. Too often I see *everything* blamed on autism. Other families say “it is hard to transition from one grade of school to the next,” or “that first day of kindergarten is so hard because so many kids get upset when they realize they’ve been left there without mom and dad,” or “the hormonal changes of pre-teen and teen years can be so chaotic!”

Remind that newly-aware parent that they get to say those things, too. Of course it is different with autism because we Autistic people experience and think about the world differently, so we add our own individual flavor to every challenge of growing up and living life. But we are not off in our own world; we live in the same world as the rest of you. We are struggling with the same things everyone is: learning, growing, changing. Our life stories are unique, but just because everything we experience and do is “autism colored” doesn’t mean that everything about our lives that is challenging for those around us is “all the fault of autism.” Gently help that newly-aware parent to realize that blaming autism for everything difficult is the same as saying, “my child’s worldview sucks.” Gently remind them that children are not very good at separating the ideas of “my brain is different and that is a horrible thing” from “I am a horrible thing.”

And, honestly, I think the kids got it right. Any time I try to set my autism on one side and heap all my troubles over there with it and set “me” on the other side and heap all my joys there, I get a massive cognitive dissonance headache. It can take a long time to get there, but help those newly-aware parents learn that autism is not something their child has; it is something their child is. Help them shift their perspective so that they don’t fall into the trap of hating autism and loving their child because that’s a Gordion knot that gets harder to cut through the longer it is being knotted together. If you try to stick a sword into that, you’re inevitably going to cut your child because it is impossible to find the place where autism ends and the child begins. Because that place isn’t there. There is a reason the medical books call autism “pervasive.” It is in every part of a person — there is no part of me that is not Autistic. My brain is an autistic brain and everything I know, see, taste, hear, think, remember, hope, wish, feel, and do comes from that autistic brain. Help the newly-aware parents understand that if they love their child (and you know they do!) they are loving an Autistic child and that’s a good thing.

Early intervention is so crucial for future success. The faster we can get to those newly-aware parents, the more quickly we can soothe their fears, lead them to acceptance, help them to see the joy that they are inheriting from their children every day. Sure, it will be hard — all parenting is. Yes, there are things they can do to increase their child’s chances of success. But they need to be canny and learn as quickly as possible that not every professional has their child’s best interests at heart. They can be choosy and only take those therapies and lessons that help their child to grow strong and healthy. If we can get to those newly-aware parents as quickly as possible, we can save their children a lot of suffering and the parents a lot of grief and guilt. As Megen said, “early identification is so important!” And it is because we have the best chance when we can all help newly-aware parents with the early intervention they need so badly in order to thrive and to help their children thrive.

Ann Coulter: A Reprise

Content note: the R-word, bullying, threats of outing a disabled person’s identity at their work/school

Four years ago, Ann Coulter called President Obama the R-word. That was a significant event for me because it made me angry enough to change from anonymously blogging to writing openly under my name, thanks to a movement, led by blogger Jill Smo, for all of us developmentally disabled people to show our faces and let Ann Coulter know who she was hurting.

By choosing to use the R-word as an insult, thus using our disability as a bludgeon with which to beat others, Coulter showed a crass disregard for others, especially more vulnerable members of society. Coulter believes it only hurts the person she aims the R-word at, but she is wrong. It hurts all of us because hurtful words chip away at the foundation of civility and disregard for the humanity of disabled people destroys the humanity of the offender most of all.

This week, Coulter did it again, using the R-word when she tried to defend presidential candidate Donald Trump for mocking a disabled journalist. Clearly, Coulter is not reachable or teachable. But I want to re-blog my original post from October 23, 2012 anyway because it was a landmark post for me: the moment I stepped out of the shadows and came out publicly as Autistic. I was in graduate school and was being harassed and bullied by a fellow student who was threatening to tell my department about my disability. I decided to make his threats moot by coming out and I’ve never looked back since.

Until now. 🙂

So here’s my post in the original, except for the photograph of me which somehow got lost along the way. I’ve substituted in a more recent picture of me, but all the text remains as it was in the original post. Thanks for reading.

To Ann Coulter: Calling Our President the R-word Was Beyond Inappropriate
originally published by Unstrange Mind on October 23, 2012

Ann Coulter has made a name for herself by being angry, offensive, and over-the-top. She does it so often that most of us just ignore what she says. But I have to speak up about the twitter message she posted after the third presidential debate:

coulter_tweet

Ann Coulter’s offensive tweet from 2012. It reads: I highly approve of Romney’s decision to be kind and gentle to the retard.

This is wrong on so many levels! A pejorative term based on a medical label for a vulnerable and disenfranchised population is not an appropriate insult. One blogger, jillsmo of the blog Yeah. Good Times., has written a post protesting Coulter’s choice of words. Dear @AnnCoulter: This is who you insult with your words. In this entry, jillsmo asks for all disabled people who have been called “retard” to post a photo to show Ann Coulter the real faces of the people she is insulting when she uses the r-word as a pejorative.

I felt this was a perfect post to re-open my blog with. Some of you may remember the blog I kept here two years ago. I was blogging anonymously at that time and a colleague at my university began making hateful posts here and threatening to out me in my department as autistic. (Not that many people would have been terribly surprised. Despite being deeply in the closet at the time and struggling to pass as neurotypical, I’m “strange” enough that no one was fooled. They may not have figured out my exact diagnostic label, but anyone who got to know me figured out pretty quickly that there was “something up” with me.)

I was so upset by the attack and I feared so much for my position at my university and my future career that I closed down this blog.

Now I’m ready to re-open it and I’m ready to come out of the neurodiversity closet. Now is the time to post my photo and let Ann Coulter see who she hurts when she uses “retard” as an insult. She hurts me, Sparrow Rose Jones, doctoral candidate at Idaho State University:

Sparrow Rose Jones

Sparrow Rose Jones

My official diagnosis is Asperger’s Syndrome (soon to be “Autism Spectrum Disorder: Severity Level 1” when the DSM-5 comes out in May of 2013.)

I first recall being called retarded in first grade. I would slip out of my desk and crawl on the floor to the back of the room where I’d hide under the table. If I was caught, I’d begin meowing like a cat. I was reading at a high level but refused to participate in reading lessons. I did not interact normally with the other children and my teacher did everything in her power to have me removed from her classroom (and eventually succeeded.)

I may have been called retarded before that point – I certainly demonstrated severe impairments in pre-school and kindergarten. But Miss Katzman, my first grade teacher, is the first person I know of to have used the term in reference to me.

Through the years, many other people have called me “retarded” or “retard.” A few times I’ve been called “mental,” which I assume either means retarded or mentally ill. I have been at the grocery store and overheard: “see that girl over there? Is she retarded?” I have been asked to my face: “are you retarded or what?” And I had to undergo a battery of tests so my school could decide what to do with me after Miss Katzman declared me to be retarded and unsuited for her classroom.

So, Ann Coulter, this is the face of one of the many people you have insulted and deeply offended with your off-hand remark. I am sensitive, I am vulnerable, and I have a lot to offer the world if I am given the chance to do it and not stymied by the sorts of judgments that tend to come from a society that thinks words like “retard” are appropriate insults.

I stand in solidarity with everyone else who has ever had the term “retard” slung at them for any reason. We are many different sorts of people from many different walks of life with many different talents and traits of value. Every time the r-word is thrown about, all of us are devalued. All of us suffer. And all of society suffers as a reult of what is lost when we are treated like jokes, like garbage, like useless nothings suited only to be used as a comparison when one wants to say nasty things about other people.

I am proud to welcome President Obama into our ranks. No, he is not from the same vulnerable underclass as many of the rest of us who have had the r-word slung in our direction. But he has shown recently that he cares about us and wants to help us live fuller, richer lives. I welcome you, Obama, as an honorary member of our group. You are our ally. Ann Coulter has used our existence to slap you with. You, on the other hand, have listened to our difficulties and created legislation designed to support and accommodate our needs so that we can move into more fulfilling, more productive lives.

I think it is obvious, between Barack Obama and Ann Coulter, which is the one with valuable things to say and do with respect to the more vulnerable members of our society and which is the one working to maintain an oppressive status quo under which vulnerable people are little more than tools to be used for insulting others.

Coulter has done one useful thing, however. She has inspired me to come out of my disability closet. I’m here and I’m willing to be counted. And as long as there is breath in my lungs or muscles twitching in my fingers, I will use my voice and my words to speak out against stigma and injustice.

© 2017 Unstrange Mind

Theme by Anders NorenUp ↑