Category Archives: Guest Posts

Say the Word: On Delaying an Autism Diagnosis

autismwordSomewhere out there — right now — is a parent who just heard something she didn’t like. Someone who loves or works with her child suggested her precious, perfect baby may have a form of autism spectrum disorder.

There are signs. Her child is most likely developmentally delayed in significant ways. He may have walked late, often skipping crawling altogether. He may lack the fine motor skills other same-age peers have already mastered. Physically, he may lack the strength, balance, and coordination to do the typical things young children do, such as ride a tricycle, jump, run, or hold on tight when taken for a ride on daddy’s back. Perhaps most significant is a delay in speech. He may have developed a few words and lost them, or he may have never made any kind of vocalizations. In addition to not speaking, he may not understand the speech of others. And, if his name is called, he may not consistently respond — if he responds at all.

In addition to developmental delays, he probably has exhibited some quirky behaviors. He may not play with toys appropriately, preferring spinning, lining up items, or flicking strings or non-toy objects. He may not be able to tolerate certain textures, touches, sounds, or lighting. He may throw sudden tantrums that go far beyond any prior conceptions of the word. He may appear to be present physically — but live in a world of his own. Or he may not have many developmental needs at all, yet be unable to connect to others, read social situations, or tolerate change of any kind.

And though his mother probably already noticed these delays and odd behaviors, she is angered when the subject of autism inevitably comes up. She thinks she has good reason.  Continued on HuffPost Parents…

Flappiness Is on the Huffington Post!

I submitted this to Huffington Post — and then decided they must not have liked it, jumped the gun, and posted it here a few days later.  Today, HuffPostParents published it!  (Which was a real thrill.  It’s been on my Writer Bucket List.)  So -just  in case you missed/understandably ignored my email – here’s my latest.  😉

 

Why Autism Families Are So Angry with Disney

walt-disney-castle-20299809Life for an autistic child is full of no’s.

No, those children don’t want to play with you.

No, you won’t be able to tolerate this restaurant, theater, store, etc.

No, we can’t/won’t/don’t service kids like you.

No. No. No.

As parents of severely autistic children, we hear a lot of no’s as well. You get so used to all the no’s that they cease to surprise you anymore. You expect them. You are prepared to fight them, but lose a lot. And you steel your heart for many disappointments.

Like, for example, the disappointment you feel when your child’s school pictures arrive — and it’s evident the photographer made no effort to spend the extra time necessary to get a good one. The expression is awkward, sad, or simply…vacant. Every year. Every time.

Or the disappointment you feel when your child cannot tolerate the sensory assault of participating in scouting, youth sports, children’s gyms, or art classes. And you have to carry him out the door screaming, suffering, and worse — brokenhearted.

The disappointment you feel in your fellow man when they stare, become annoyed, or make comments about your child’s autistic behaviors. Behaviors your child cannot control. Behaviors that still don’t prevent your family from needing to run errands, go out in public, and have fun on occasion.

And so you grow thicker skin, and you try to help your child to do so as well. You tell yourself that the no’s don’t matter. You try to smile when well-intentioned people tell you that you “must be a special person” to be given this child. But you don’t feel very special. You feel helpless. You see your child trying so hard to navigate a world that he cannot fully access. You see the future — and all the no’s that will certainly be coming. All the normal expectations of college, marriage, children — that aren’t necessarily in the cards for your beloved child. You try so hard to make every moment as beautiful and wonderful as you can.

Because — in the dark hours of worry — you sense the need to fill your child’s memories with as much joy and love as you are able. Because you know there will come a day when you are gone. And there might not be anyone left who will care if your child receives more than just shelter and food. There will come a time when there are no more special days just because.

Knowing this is coming, you seek out people, organizations, and opportunities so that your child can have as many iconic childhood experiences and joys as he is able. You learn to embrace the yes’s and those rare days in which your child gets his heart’s desire. You learn to savor present joy when you can — while simultaneously mourning the joys that may never be. Your entire family becomes skilled in adapting. Because the world adapts little — even for little boys and girls besieged and overwhelmed by it.

Recently, special needs families have been disappointed again.  Continued at What to Expect…

The Heartache of Haircuts – On Sensory Processing Disorder

haircutToday, I hurt my child. Yes, you read that correctly. I physically restrained him, hurt him, and made him cry. And he is only four years old.

Why would I do such a thing, you might ask. The answer might surprise you.

He needed a haircut.

Did I beat or harm him in so many of the awful ways adults choose to brutalize their children? No, of course not. I love him. Like most of you, I would gladly give my life for him.

But, today, he needed a haircut. A haircut he didn’t want — not because he is incorrigible. It’s because he’s autistic, and many children with autism cannot tolerate the experience of a haircut.

A while ago, a story made the rounds of Ashley Bays, mother of an autistic two-year-old son. She took her little boy to a salon to get a haircut. When her son began screaming and reacting to the haircut, the salon owner came out and loudly berated Ashley for her son’s disruption of her salon. In tears, the mother apologized and explained her son’s autism. The stylist had to finish the child’s haircut on the sidewalk…Continued at What to Expect.  

I May Be Oversharing about My Special Needs Child, and That’s Okay

autismscrabbleI write about my children — in particular, my autistic child — on the Internet. I write about them and share my own experiences in raising them — for complete strangers to read. My joys, mistakes, successes, grief, guilt, self-doubt, and even those dark, middle-of-the-night moments of all-encompassing fear. I write about it all. That’s me. I’m a special needs parent blogger.

And there are some folks out there who take issue with it.

There are those who question the wisdom of sharing my child and my life with the whole world. On the surface, my actions seem unwise. Why would I “overshare” with the world? Why not just find real-life friends and support? Why do I put myself “out there”?

Well, just as the world isn’t an easy place to be for those with special needs, it often isn’t much kinder to their parents. A hundred years ago, parents of special needs children were likely to have larger families — sisters and brothers who helped with the daily needs of the family and home. Because people started their families earlier, there were often multiple generations able to help out. More aunts, uncles, cousins, and grandparents to call upon.

Yet, special needs families today aren’t usually so fortunate. Many of us are spread across the county — far from family. Many, due to the extended start of childbearing, no longer have the wisdom and comfort of our mothers, aunts, grandmothers, and other mothers who’ve made this journey before. We don’t all have the support of a church family or neighborhoods where we all know each others’ names.

So, special needs parents (and all parents really) find themselves adrift in a society in which, “How are you?” has no more meaning than “Hello.” We are isolated, with no one to tell us that we are doing it right, that we might try this, or that it isn’t our fault. Special needs parenting is a lonely journey for so many of us.

The Internet has changed that somewhat. In the last two years, I have interacted with thousands of other special needs parents. Those who are like me — just starting out and wondering if they are going to make it. Those a few years in — who share resources of what helped them not so long ago. Those whose children are grown — who reach out with a gentle pat and say, “Honey, you’re doing just fine. What you are feeling is normal. It’s gonna be okay.” All of them — all of them — sustain me and others like me. They are the community we need and cannot always find locally. They connect us and remind us of a basic human need — to know that we are not alone.

There are some who question the loyalty of a parent who would “violate her child’s trust” by exposing his needs and differences to the world. Why would I choose to share that which Continued at WhatToExpect.com…

Why I Won’t Be Getting Mother of the Year (Guest Post for WhattoExpect.com)

If you have been a subscriber for a while, you might recognize this one from a year ago.  It’s my latest guest post for WhattoExpect.com.  We’ve had some developmental gains in the past year, and I’m still learning how to tame my fears.  But this was a snapshot in my journey, and it was a post I’m somewhat proud of.  :)  

wteI used to believe that clarity was epiphanic. As in, you don’t understand and then — presto whammo! — you have an experience, an epiphany, that brings about full insight and you are that much wiser for it.

I know better now. Parenting a child with special needs is good for that, teaching you all kinds of lessons you never volunteered to learn.

I now know that understanding is multi-layered. Clarity comes in concentric circles. Just when you think you have come to a level of peace and acceptance, something occurs and you realize that there is a whole deeper level of understanding with which to contend. This is how the painful and stressful stuff gets you. It peels back another layer, and there you are again.

I’m beginning to understand this a bit better now. Realizing that true understanding, acceptance, and sometimes grief are forever cycling, beginning again with each new layer revealed. Comprehending that the things I am worried about now with regard to my special needs child will simply evolve into more complex facets of themselves.

A week ago, we took our kids on our first road trip to visit family in North Georgia. It was an eight-hour car ride and things had been going quite well. Callum was so easygoing, happy to look out the window, stim, babble, and giggle. Bronwyn christened us into traveling parenthood with endless bouts of, “Are we there yet?” — which, at four, is not unexpected. I found an awesome classic country station on the radio and got my southern belle on belting out fun singalongs like “Living on Tulsa Time” and “Family Tradition.”

I felt normal. Positive. High-spirited even.

Just a couple of hours away from our destination, Sean and I decided to break for lunch. We chose a McDonalds with a play area — determined to allow the kids some time to run their little legs off a bit. And it was a really nice play area — sectioned off, indoor, safe, complete with tables and even a toddler zone. Even the parents were all nice — smiling at others and encouraging their children to be careful with the littler ones. It should have been ideal.  Continued at What to Expect…

Learning to Understand What Autistic People Understand (or Don’t): What You See Is Not What You Get

brainstorm1Today, I am pleased to have Emily of Mosaic of Minds on Flappiness.  This piece is a response to my  most recent post, “He Proved Me Wrong: On Autism and Presuming Competence”. As flattering as it is to be referenced in another post (well, usually), I was blown away by this sensitive and intelligent take on this issue.  Consider me a new fan.  :)

There are two opposite ways to misunderstand autistic people.  One is to assume they don’t understand when they do.  The other is to assume they do understand when they don’t.

My younger brother, who is very bright, had hyperlexia–a form of language development involving early reading, vocabulary, and mechanical knowledge, but delayed comprehension.  He loved Disney movies as a toddler, and we caught him spelling out “Walt Disney Pictures Presents” with alphabet blocks when he was two.  It can be hard to tell when a child growing up in a sea of words and books truly learns to read, but we think he taught himself to read when he was three.  Although he was late to talk and spoke very little at first, when he did start speaking, he had good vocabulary and grammar.  And when we spoke to him–the way my parents spoke to me, the way we’d speak to any verbally talented child–he seemed to give all the verbal and nonverbal indications that he understood.

But often, he didn’t.

In retrospect, the signs were there.  There was a particular way he stared sometimes when I talked to him that looked like a deer in the headlights.  Eyes large and blank, mouth open.  I figured there was no way he couldn’t understand me, so I thought he was doing it on purpose to annoy me.  It was only after the diagnosis of “Aspergers” that we realized that he really didn’t understand.

Flappiness wrote a beautiful but often painful post about the opposite problem: struggling to presume competence in a child who gives none of the cues to understanding we expect.  TRIGGER WARNING: this may be hard to read if you yourself have been presumed incompetent.  The reason I’m quoting her here is that she *does* understand the importance of presuming competence, and tries to do it, but it might still be hard to hear why it’s difficult.  If that’s true for you, please skip to the end of the block quote and continue reading.  She writes:

“Always presume competence” can be a hard rule for non-autistic folks to follow.  That’s not because we don’t agree – at least in theory.  But severely autistic people may not give a lot of signals that they understand something.  They often do not appear to be listening or watching.  And, when you ask them to do something based upon what they have seen or heard, many do not respond as we would expect them to.  In the absence of any visual indicators demonstrating competence, it is easy to wonder whether understanding is happening at all.  For, somewhere in the back of a typical person’s head, we wonder why someone who understands doesn’t respond when it’s in his best interests.  It’s a lot like religion.  You can be taught the tenets of your faith.  You can reason out your belief system in your head.  But, in the day to day grind of living, it is natural to question what we cannot see.  We wonder if there is a God out there.  And we wonder if our severely autistic loved ones really comprehend all that is happening around them.  Maybe you’ve never wondered.  Maybe you are like those fortunate folks who have never doubted their faith.  But, if you’re like me, you have wondered, worried, and sometimes been haunted by the possibility that you are wrong.  Or even that you are right.

When I began to be convinced of Callum’s autism, of the first things a mother of two autistic children told me was never to talk about him while he’s in the room and to always believe that he knows what is happening.  She related stories to me of her children recalling events from years earlier that she had believed they had not noticed.

But they had.  And with perfect recall of the details.  Because they didn’t talk at the time or cooperate with what was requested of them, she had assumed they weren’t listening. Having known them at that time, I would have agreed with her.  They didn’t appear to be listening at all.  At that time, they could barely talk.  No, we shouldn’t have assumed, but -unfortunately- it’s an easy mistake to make.

Fast forward several years, and now I have an autistic little one of my own.  But even having heard her story, I questioned the truth of it with regard to my own child.  I’ll admit that I was somewhat confident of my own ability to read him.  I thought I would see the proverbial light bulb go off and then I would presume competence.  But Callum, in the grand tradition of children everywhere, has humbled me recently.  We are having a little “language explosion” you see.  Almost every day now, he is surprising us with knowledge he had – but had not previously shown. Knowledge I was so very afraid he wasn’t absorbing.

Today, Callum spoke his name for the first time.  And I missed it.   It sounded more like “Cam”, so I didn’t pick it out of his typical babble chatter until he said it a few more times–while waving at his own reflection in the mirror.  (Yeah, I know.  Sometimes, I am not so smart.)  I remember turning and asked him if he’d said “Callum”.  So he looked back to the mirror, waved at himself again, and said, “Callum” — with the sweetest smile.  I’m sure I stopped breathing for just a moment.  Overjoyed though I was that he finally said his own name, what hit me was his determination to be seen and heard.  He kept on – until I got it — and then confirmed it.  Apparently, he was motivated to speak his name by the reflection of himself in the mirror.  A reflection he liked.

So, now I must learn how to adjust the mirror in my eyes to reflect who he really is and who he can be.  Because he is watching.  He is listening.  He is learning.And when he looks at himself through me, I want him to like and be inspired by what he sees.  For, if what he sees in my eyes is not faith in him, how will learn faith in himself?

All right, everyone back with us?

The problem is, most of us have a certain set of verbal or nonverbal cues we automatically assume mean understanding, and another set that we automatically assume mean incomprehension.  A particular sort of fixed-but-not-too fixed eye contact; nodding; mimicking our movements; interrupting only to ask an appropriate question or to “follow on” or “elaborate”–these and others seem to say, “I understand.”  Blank eyes, furrowed brow and puzzled facial expressions, looking around a lot, shrugging, unusual silence without questions and comments–these and others say, “I don’t understand.”  And most of the time, for most people, these work–otherwise, we’d have a different set of assumptions.  The problem, though, is these interpretations don’t feel like interpretations.  They’re automatic.  You look at someone and see “they understand” or “they don’t understand what I’m saying” the way you look at the sky and see it’s blue.  It takes a thoughtful person to even see how you could question it.  You see it, it’s there.

But autism doesn’t work like that.

It’s been said that autistic kids are monotone (but really, their pitch is wider-ranged and more variable than the average person’s; we just don’t hear it because we don’t expect it 1,2,3,4).  It’s been said that autistic kids have a poker face.  I don’t know of any studies actually investigating this, but my guess is it’s true for only a few.  The rest probably have subtle, or just different, expressions we don’t know how to interpret.  It’s been said that autistic people don’t express their feelings, even know what they are, until they explode in a dramatic meltdown of tears and yelling and maybe even flying fists.  Maybe–but isn’t it also possible that we don’t see the warning signs before the meltdown the way we might with a typically developing kid who is overtired, hungry, and on the way to a similar meltdown?  It’s been said that autistic kids are in their own world, that they don’t express love.  And it’s true that many don’t like hugs, don’t point, don’t follow their mothers’ joint attention.  But they feel connected and learn new words when their parents follow their joint attention, just like any other kid 5,6,7.  And some autistics, such as Ballestexistenz, have pointed out in video recordings all the signs of love and caring that autistic kids show.  Ones that weren’t conventional, weren’t expected, and so they were missed.

There’s a lot of emphasis on teaching autistic kids to understand how and why neurotypical people behave the way they do.  And there should be, so autistic kids no longer feel so adrift on the “wrong planet” where the rules don’t make any sense  There’s a lot of emphasis on teaching autistic kids to emit the cues we’re expecting, so we know how to interpret their feelings and behavior.  And this is a great thing for autistic people to be able to do, especially when dealing with people they’ll only have to deal with once or twice, who aren’t going to invest the time to learn their cues.  But parents, siblings, spouses, and friends who want to learn how to interpret their autistic loved one’s cues are on their own.  Only like-minded neurotypicals and autistic adults are encouraging them to do it.  Most don’t even know it needs to be done.  Unfortunately, a lot of neurotypical parents, siblings, spouses and friends don’t seem to realize that either.

And here’s something everyone in the autistic community should know: it’s hard to undo conditioning you didn’t even know you had, that’s as basic as seeing that the sky is blue, and replace it with….what?  As hard as it is to undo your basic reactions, as much patience and self-questioning as it takes, at least you know what’s required.  But when trying to figure out the real cues, how do you know what to look for?  It’s even harder if your autistic loved one can’t speak and tell you if you’re on the right track.  This is one of the most valuable things autistic bloggers do: not only do they tell you what the world looks like from their perspective, but you can sometimes catch little glimpses of what they look like from the outside, so you can tell whether your autistic loved one is experiencing a similar emotion.

This is a hard struggle, and I can understand why people looking only for casual friendships or acquaintanceships might be scared off by the work required (although as Rachel Cohen-Rottenberg points out, they are placing their own convenience above another human being’s need to feel connected).  But I think anyone who loves an autistic person and is connected with them in some long-term way is obligated to try.  We need to question our assumptions, observe our autistic loved one closely, ask them and other autistic people about anything we don’t understand (and there will be a lot of questions–and probably should be).  (By the way: not every autistic person always feels up to answering, or wants to field questions, something we should also respect–and ask someone else).

We probably will fail, a lot.  We need to be patient with ourselves and keep trying.  And if the autistic person in our lives grows up and one day asks, “why did you do this horrible thing?” We have to be able to look them in the eye, apologize, and say, “I’m sorry, I did the best I could, but I didn’t understand.”

To acknowledge that replacing our automatic social assumptions is hard is not an invitation to engage in a “woe is me” pity party.  We only have to learn to interpret a new set of social cues, not learn to imitate them ourselves–the autistic people in our lives have a much more difficult struggle than we do.  For other non-autistic people, it’s about realistically confirming, sympathizing, validating: yes, this is the unique situation involved with loving someone with autism, no, you’re not alone, yes, it’s hard, and yes, it’s OK to feel overwhelmed sometimes, even if other people have harder struggles. For autistic people, it’s about understanding that when we (inevitably) screw up sometimes, it’s not out of malice.  Some of us really are doing our best, and are open to learning, but we have our own limitations of time, energy, patience, or mental health to deal with.  So please bear with us as we keep learning. 

The world may not always understand the autistic person in our lives, no matter how “typical” they may have learned to appear.  But I’d like to think that we can.

Mosaic of Minds is a cognitive neuroscience student with a brother on the autism spectrum. She hopes to research the nature of talent & disability someday. She wants researchers & others to see autistic people as people, listen to them, & recognize their strengths as well as their disabilities. She loves critical thinking, challenging questions, and intellectual discussion. You can chat with her on Twitter and read her thoughts on autism research and more at Mosaic of Minds.

References:

  1. Yoram S. Bonneh, Yoram Levanon, Omrit Dean-Pardo, Lan Lossos, & Yael Adini (2010). Abnormal speech spectrum & increased pitch variability in young autistic children. Frontiers of Human Neuroscience 4: 237.
  2. K. Hubbard & D.A. Trauner (2007). Intonation and emotion in autistic spectrum disorders.  Journal of Psycholinguistics Research 36, pp. 159-173.
  3. A. Nadig & H. Shaw (2012). Acoustic & perceptual measurement of expressive prosody in high-functioning autism: increased pitch range and what it means to listeners. Journal of Autism & Developmental Disorders vol. 42 Iss. 4, pp. 499-511.
  4. Megha Sharda, T. Padma Subhadra, Sanchita Sahay, Chetan Nagaraja, Latika Singh, Ramesh Mishra, Amit Sen, Nidhi Singhal, Donna Erickson, & Nandini C. Singh (2010). Sounds of melody–pitch patterns of speech in autism. Neuroscience Letters Vol. 478 Iss. 1, pp. 42-45.
  5. Michael Siller & Marian Sigman (2002). The behaviors of parents of children with autism predict the subsequent development of their children’s communication. Journal of Autism & Developmental Disorders vol. 32 Iss. 2, pp. 77-89.
  6. Michael Siller & Marian Sigman (2008). Modeling longitudinal change in the language abilities of children with autism: parent behaviors and child characteristics as predictors of change. Developmental Psychology Vol. 44 Iss. 6, pp. 1691-1704.
  7. Twyla Y. Perryman, Alice S. Carter, Davniel S. Messinger, Wendy L. Stone, Andrada E. Ivanescu, & Paul J. Yoder (2012). Brief report: Parental child-directed speech as a predictor of receptive language in children with autism symptomatology.Journal of Autism & Developmental Disorders.

 

How to Explain Autism to Typical Kids (and Lots of Others While You’re at It)

My beloved Daddy and Callum at his 3rd birthday party.  Taken a few weeks before his passing.

My beloved Daddy and Callum at his 3rd birthday party. Taken a few weeks before his passing just this time last year.  I loved that I didn’t have to explain autism much to him.  He just had an affinity with Callum and understood him.  He found him fascinating and was always trying to figure out what Callum was thinking.  They liked one another just fine.  :)

Autism awareness and acceptance are good things. The more the average person knows about autism, the better it will be for the community — especially our autistic members. Yet, the average person can’t easily define autism. Quite frankly, our experts in autism don’t do such a great job of defining it either. It isn’t a simple concept, because it isn’t a simple state of being. Autistic people vary greatly in how they are impacted by their differences — from highly articulate individuals living full lives and advocating for themselves and others to severely disabled autistics unable to communicate in any way.

So, how, is the average parent/teacher/youth mentor supposed to help the typical kids in their care understand a condition that is so complex? How do we explain it to the unaffected kids who will inevitably encounter other children on the spectrum at school, church, and birthday parties? How do we help them to become not merely tolerant, but to welcome their spectrum peers and interact with them?  Continued at WhattoExpect.com.  

I’m Guest Posting at WhattoExpect.com

I’m guest posting at What to Expect again.  If you’ve been with me a while, you might have read this one before.  It’s “So You’re Wondering If Your Child Might Be Autistic”, which I would describe as a starting place for someone worried about autism in a small child.  This post is one I get the most email correspondance from concerned parents.  I hope it helps someone in those first days of wondering and worrying.  :)

So you’re wondering if your child might be autistic. I know. I’ve been where you are sitting right now. Searching the Internet for signs of autism spectrum disorders. Going back up to the search bar to enter a different set of keywords, hoping to find some other site that will assure you that these strange behaviors your child has been evidencing are perfectly normal. Telling yourself he is just a little behind. Sharing your worries with a friend or family member, calming down for a day or two after being reassured by them that, no, it isn’t autism. And now you are wondering if you are just being paranoid. You’re worried that you might be borrowing trouble that you don’t need and possibly stigmatizing your child with a label that will follow him around for life. Yep, I’ve been there — and quite recently.  (Continued…)

 

7 Things You Might Not Know to Ask for When Transitioning Your Autistic Child to Middle School

“Middle school” is a scary phrase for most parents. Thoughts of your baby wandering around a big school, trying to find his classes and being run over by much bigger 8th graders are frightening. He will no longer be cocooned in the safety of his elementary classroom with a teacher who knows him well, and there is the expectation your child will be able to function more independently. But what if your child is on the autism spectrum? What if he has difficulty advocating for his needs? What if he is difficult to understand? Or becomes overwhelmed? How do you rest easy knowing that his differences may make him an easier target for bullies?

I am a middle school teacher/media specialist and an autism parent. In my 15 years of teaching middle school, I have encountered many children on the autism spectrum. Some struggle and, yes, some do quite well. I have learned small things can make all the difference for our special kids. Unfortunately, many parents don’t know they can ask for special assistance. Without the proper plans in place to begin with, it can take months or years for solutions to occur to teachers or administrators.

Every child is different — autism or not. The following ideas are things I have seen to be most helpful for spectrum kids surviving middle school:

1. A 5-minute early pass. If your child is overwhelmed by loud noises or people bumping into him, passing time in a middle school hallway can be upsetting. Ask for a laminated hall pass to leave each class five minutes early. Your child will then be able to use the restroom and make it to his next class in peace. A pass may also curtail bullying, which often occurs in the bathroom or hallways. Deans and guidance counselors utilize such passes for students for various reasons and it won’t hurt to have one. If you find your child doesn’t have a problem in the hallways, he can simply choose to not use it.  (This post is continued on WhattoExpect.com.)