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	<title>A Room of Mama's Own &#187; early intervention</title>
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		<title>The Autism Label</title>
		<link>http://aroomofmamasown.com/2009/03/the-autism-label/</link>
		<comments>http://aroomofmamasown.com/2009/03/the-autism-label/#comments</comments>
		<pubDate>Tue, 10 Mar 2009 18:30:00 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[autism]]></category>
		<category><![CDATA[early intervention]]></category>
		<category><![CDATA[labels]]></category>
		<category><![CDATA[stupid psychological tests]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/?p=1258</guid>
		<description><![CDATA[Image credit: Photo by Meredith_Farmer on Flickr Licensed under Creative Commons When my son was two, he was not speaking, and our pediatrician gave us a series of referrals to begin the process of having him "evaluated." Since speech delays can be caused by hearing loss, we made a trip to the nearest children's hospital, [...]]]></description>
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<td align="right"><span style="font-size:78%;">Image credit: Photo by<br />
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<p>When my son was two, he was not speaking, and our pediatrician gave us a series of referrals to begin the process of having him "evaluated."  Since speech delays can be caused by hearing loss, we made a trip to the nearest children's hospital, the only place in our area with facilities and equipment for testing the hearing of non-verbal children.  We filled out reams of paperwork about my pregnancy and his development up to that point: Were there any complications during pregnancy?  What was his APGAR score at birth? When did he first sit up? crawl? walk? wave?  Austen sat on my lap in a special room with mechanical toys that would light up and move if you looked toward a sound.  I tried not to move and cue him to the beeps I heard or the sound of the examiner calling his name.</p>
<p>When (as we had expected) no problem was found with his hearing, we spent hours filling out reams more paperwork with all of the same questions (and more) all over again on new forms.   A psychologist interviewed me by phone about Austen's behavior.  "Does he make eye contact?" she asked, "Does he engage in any repetitive activities?  Does he bang his head?"  And I seethed with anger.  I knew where she was going with this; she hadn't even met him and already she was trying to stuff him in a box and slap the autism label on him.  How could that label possibly fit?  It left out so much about who he was.</p>
<p>After the phone interview, we took Austen in to meet a team of evaluators.  Mark and I sat in a hard plastic chairs in a room full of toys, watching psychologists and therapists ask Austen to play with the right toys the right way and point at the proper pictures.  It was grueling.  They were all very nice and friendly, and they seemed genuinely entranced with our son's cuteness, but it was their job, not to focus on his strengths, but on what he couldn't do: to measure his deficiencies and stamp him "defective, needs repair."  I looked at him playing and saw Austen being Austen; they looked at him playing and saw something wrong with him.</p>
<p>I tried to silently will him the answers.  "Come on, kid.  These people think there's something wrong with you, show them they're wrong."  And time after time, he'd just completely ignore the question.  I'd watch them mark their papers; another strike against him.  "I know he knows what a ball is," I'd plead, as if all his future happiness and mine were riding on him knowing that and on them knowing that he knew.  "We have to score this based on what he answers," they'd say.</p>
<p>I knew he was not doing what typical kids were.  I knew that whatever we were doing alone didn't seem to be enough to help him navigate the world.  Yet here I was pleading with the examiners to give him the good score that would disqualify us from help, because if he got a bad score, they would slap on that label they were dying to stick to him: autistic.  Then no one would see my beautiful son Austen anymore, they'd see "the autistic kid" and everything about him would be interpreted through that lens.</p>
<p>And I could see the label distorting the perceptions of the evaluators already.  When Austen entered a large open space and spun around until he fell down (something he does much less frequently than I did as a child), the evaluator said, "Oh, lots of kids on the spectrum spin like that."  (Lots of neurotypical kids do too.)  When Austen walked into a new room and stood on tip toes, craning his neck and inching forward to see a train (his obsessive interest at the time) on a shelf high up in the room, an evaluator said, "Ah, he toe walks." (He doesn't.  Ironically, he was displaying a different autistic trait: doggedly pursuing his specific interest.)</p>
<p>What if, years down the line, his kindergarten teacher or his fourth grade teacher or his high school gym teacher his saw "autistic" in his file?  Wouldn't they do the same?  Misinterpret his behavior?  Not see him for all he is?  Not see him as an individual?  Not help him learn all he needs to know?  Because autistic sums it all up.  Game over.  Case closed.</p>
<p>It was around this time that a friend of mine, whose son is also on the autism spectrum said gently, "You know, the label doesn't change anything.  It just allows you to get Austen access to help he needs.  He is still the same beautiful child you love.  Nothing about him is different."</p>
<p>"But," I protested, internally, "The way the world sees him will be different."  It took me a while to see that he <em>is</em> different, and the world is going to see him that way no matter what I do.  It's not like his teachers and peers don't notice that he's eaten the same thing for lunch every day for three straight years.  It's not like they haven't noticed his literal thinking and obsessive rituals or his distinctive speech patterns and intonation.  There will always be labels and labels will always be limiting.  If I didn't choose a label for him, the world would anyway, and the world tends not to be kind in its labeling.  I could choose to let others decide he was "stupid" or "<a href="http://parenting.blogs.nytimes.com/2009/03/05/dont-judge-a-mother-until-you-know-the-whole-story">bratty</a>" or "disobedient" or "a freak" -- or I could accept and advocate for "autistic."  The world may throw those labels at him anyway, but at least we have a label of our own, however imperfect, to act as a starting point for understanding.</p>
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		<title>You Can Teach an Old Dog New Tricks</title>
		<link>http://aroomofmamasown.com/2008/02/you-can-teach-an-old-dog-new-tricks/</link>
		<comments>http://aroomofmamasown.com/2008/02/you-can-teach-an-old-dog-new-tricks/#comments</comments>
		<pubDate>Thu, 07 Feb 2008 05:05:00 +0000</pubDate>
		<dc:creator>Mary P Jones</dc:creator>
				<category><![CDATA[autism]]></category>
		<category><![CDATA[early detection]]></category>
		<category><![CDATA[early intervention]]></category>
		<category><![CDATA[parenting]]></category>
		<category><![CDATA[perfectionism]]></category>
		<category><![CDATA[sleep deprivation]]></category>

		<guid isPermaLink="false">http://aroomofmamasown.com/wordpress/?p=350</guid>
		<description><![CDATA[Several weeks back (boy, the series of viruses that have hit my house recently have really got me behind!), a reader forwarded me an article on autism secrets for parents. The article was posted by Autism Diva (a blogger I ought to have visited by now, but in my perpetual state of overwhelmedness, haven't -- [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://bp3.blogger.com/_IrByn7nIu9E/R6VuCULX__I/AAAAAAAAAUg/HeqzPHFn6zs/s1600-h/dog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img id="BLOGGER_PHOTO_ID_5162653533905354738" style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer;" src="http://bp3.blogger.com/_IrByn7nIu9E/R6VuCULX__I/AAAAAAAAAUg/HeqzPHFn6zs/s200/dog.jpg" border="0" alt="" /></a>Several weeks back (boy, the series of viruses that have hit my house recently have really got me behind!), a reader forwarded me an article on <a href="http://www.wrongplanet.net/article358.html">autism secrets for parents</a>.  The article was posted by <a href="http://autismdiva.blogspot.com/">Autism Diva</a> (a blogger I ought to have visited by now, but in my perpetual state of overwhelmedness, haven't -- sigh!) at <a href="http://www.wrongplanet.net/">The Wrong Planet</a> (an online community for people with Asperger's where I have been known to lurk in the shadows, learning).</p>
<p>The whole article is worth a read, but the part that really struck me was this: "The idea of 'critical periods' or 'brief windows of time' during which you can teach your child something, has been exaggerated and oversold."  Now, I know that Autism Diva was talking about autistic children here, but I'd say the same holds true of all children.</p>
<p>Before my son was born, I collected all of these factoids about child development: how the ages between birth and three years old are critical to a child's development, how a child loses the ability to distinguish the unique sounds of other languages before the age of one, how neural pathways that are never exercised in infanthood are never created.  And I felt this huge sense of urgency knowing that little brain was growing and changing and making connections in ways it never would again.  Why didn't I speak another language?  My kids would never learn to say a Spanish  "R!"  Who knows what else I was depriving them of?</p>
<p>When my son was an infant, the topic most on my mind was sleep: namely, how little I was getting.  So, I looked to the sleep "experts," all those parenting books that are supposed to have all the answers, and some of them contained alarming information.  I was told that in order to ensure "good sleep habits" I would have to act and act quickly, because soon the window for dealing with sleep issues would be forever closed, and this and all future children would be sleeping in the bed with me, waking me every few hours until they went to college.  Thank goodness I acted on that advice and...  Oh wait.  I didn't.</p>
<p>I learned that I could do all the work I wanted on the sleep of a six month old but teething, colds, developmental leaps, a move to a new house, a vacation, a new bed, the birth of a sibling, a scary story, a new school, a visit from Grandma, a babysitter, a holiday, a storm, nightmares, anything and everything could disrupt sleep patterns and send us all right back to the vast wasteland of Sleep Deprivation.  There was no magical window of time during which my children had to learn to sleep through the night (or sleep in their own beds) or risk never acquiring the ability to do so.  Each of my children now spends most nights from bedtime until morning asleep in their own beds.  Each learned to do it at a different time, in different ways.  Each has relearned this particular skill again and again.</p>
<p>And as for the Spanish R my children will never learn?  So they'll have an accent.  So it will take more time to learn.  The window for distinguishing those sounds may be gone, but the window for learning to speak another language never closes.</p>
<p>Last week, I mused about some of the <a href="http://www.aroomofmamasown.com/2008/01/early-signs-of-autism.html">early signs of autism</a>. And if you have heard much at all about autism, you have probably heard about how crucial "early intervention" is. The sooner we know about autism the better, because we can start those kids in therapy, right? Without early intervention there is (cue ominous music) <em>no hope</em>!  But I'll tell you a secret to add to Autism Diva's: you know who early detection benefited most?  Me!  My son is learning and changing and growing at this amazing rate.  He makes learning look easy.  Now my 40-ish brain can learn, because I'm telling you that it's always possible to learn, but I'm not half as quick as he is.  The real benefit in early detection was to give <em>me</em> that much more time to learn about autism, to learn how to advocate for my son with the school system, to learn how to be the best mama to him I can be.</p>
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