Autism Understanding & Acceptance 2014 Day 5: Suspecting Autism in others

Two different people sent me questions revolving around a touchy subject : how do you approach a parent with your suspicion that his/her child has autism?

Hoo boy, that one’s a doozy.  And this is going to be a long one. 

First off, I will connect you with the M-CHAT (Modified Checklist for Autism in Toddlers): https://www.m-chat.org/mchat.php

For more information: http://www.autismspeaks.org/what-autism/diagnosis/screen-your-child

Now to answer the question: you do so VERY carefully.   In fact, I would say that if you are not a close friend, close relative or medical professional, keep your mouth shut. 

If you are a close friend or relative, wait for a moment when the child in question is doing something (or NOT doing something) that you’ve seen on this checklist, then just talk about it.  Ask the parent what they think about the behavior that the child is exhibiting, but try not to be negative about it.  Don’t offer a diagnosis.  Try to get them to talk.   Do they suspect anything?  Just go carefully, gently, lovingly.

If you are a professional, use the M-CHAT.   And know that if the parents are taking their child for their well-child visits, pediatricians SHOULD be doing developmental screenings by now.   That’s what the M-CHAT is for. 

I can guarantee you that being gentle with this conversation is going to be best.  I can also almost guarantee you that it will be a painful conversation – and one to which your friend or relative may not react well.  No one wants her/his child to have autism.  If they suspect it, then the desperation they may be feeling - hoping that their own suspicions are not true - just may explode.

Perhaps our story will be illustrative:  We were several months into our state’s Early Intervention Program.  He qualified for it because of speech & language delays, as well as gross & fine motor delays.  I can honestly tell you that autism was not on my radar whatsoever.  I wasn’t in denial.  It just never, ever occurred to me that this could be autism.  I just thought he had delays, and with these therapies, he’d catch up by first grade or so.  

Well, a the end of one of his 5 weekly therapy appointments, the therapist gave me some information on an upcoming conference that was coming up on autism, as if I knew already.  She thought I knew.  It was just very matter-of-fact, given to me as she was headed out the door, no big deal.   But it was a HUGE deal.  After she left, I was FURIOUS.  How DARE she suggest that just because he has some delays, he has friggin’ autism???? I called another of his therapists and cried and swore and was infurated, completely indignant about this other therapist thinking my son had autism.  She listened and agreed that it was inappropriate, and probably told me a white lie by agreeing with me that he’d probably outgrow it by elementary school.    

It wasn’t until at least 18 months later when I saw a video of a child with autism, acting very much the way T did, that I believed.  It wasn’t anyone telling me.  It was a very quite moment, and anyone watching me would never have known the monumental realization to which I had just come.  I was slowly directed toward autism information, and when I saw my son in those videos, that’s when I knew.    

So go carefully.  Provide information but not a guess at a diagnosis.  Watch & listen for an opening.  And then don’t disappear. 

Autism Understanding & Acceptance 2014 Day 4: Puzzle pieces

So what's with the puzzle pieces?  This was another good question posed to me.  

Puzzle pieces have been adopted by many in the autism community as their symbol.  I've heard a few explanations.  First, autism is a puzzle that must be figured out.  I can see truth in that.  And I would add that each person with autism has his/her own solution.  Second, the puzzle must be worked until all the pieces fit.  That is some organization's tagline: "Until all the pieces fit", but I can't recall which org it is.  Third, autism is puzzling.  Yes, it can be, but I do try to stay away from negative, oppressive messages about autism.  I don't want Thomas to hear that.  

Not everyone is a big fan of the puzzle piece.  I hear this especially from the self-advocates, saying that they are not puzzles to be fixed.  They are who they are and they are not to be fixed.  Who am I to argue with that?  My respectful response to that sentiment is that while my son can't tell me what he needs, what hurts, if he's hungry or sick or scared, etc, etc, etc, then it is my job to figure that out.  Anything less would be neglectful and dishonoring his very human qualities that need tending, especially as a child.

Autism Understanding & Acceptance 2014 Day 3: Touch

The next question posed was about touch.  Does he like it?  He seems not to.

I'll answer this for T and then explain as best I can for the sensory sensitive types in general.

Thomas is quite fine with familiar people touching him.  It's the hugging that is the issue.  Only recently have I been gifted with him tolerating chest-to-chest hugs, and that's not happening too frequently.  If you ask for a hug, he will back up into you.  It must be less overwhelming to feel another body against his back than his chest & tummy.  Another thing he may do instead of a hug is lean in toward you, with the top of his head toward your face.  This is his indication that you may kiss the top of his head.  No hug, though!

For people with autism, Sensory Integration Dysfunction is pretty typical.  All our senses give our bodies input.  For us NTs (Neuro-Typicals), we can see, smell, hear, feel and taste the world and our bodies can make sense of it.  For those with Sensory Integration Dysfunction, all bets are off.  Each sense has the potential to be over-reactive or under-reactive.  So wearing a shirt with a tag may not be an issue, or be a slight annoyance for an NT, but for those with Sensory Integration Dysfunction, it could be like a knife back there.  The sound of an AC unit turning on may not even come to our attention, but for others, that noise is a huge disruption and distraction.  If your sense of touch is under-reactive, you may need to wear weighted vests or compression shirts to feel where your body is in space - and you may do a lot of "crashing": throwing yourself in to a couch or bed just to feel yourself!

It's hard for me to determine what is up with his sense of touch.  Over reactive?  Under?  On one hand, he did a lot of crashing when he was younger.  He loves for us to pound on the bottoms of his feet.  He seems to enjoy wearing compression shirts.  But he does not want a weighted blanket on him (much to my chagrin after buying one), nor does he seem to crave big hugs.  So I shrug my shoulders and say "It is what it is".

So pat him on the shoulder, give him tickles if he's in a good mood, and if he leans in, kiss the top of his head.  He'll like all of that input!

Autism Understanding & Acceptance 2014 Day 2: Bracelets

The first question posed to me by private message was about his bracelets.  I've included a picture of him happily flipping away.  T loves silicone bracelets (think "Livestrong"), and has one with him almost wherever he goes.  In fact, he's flipping a bracelet right now as I type.  He's always liked having a fidget toy, but the bracelets became a fascination two and a half years ago.  Before then it was miniature plastic Slinkys.  In a pinch, anything that is stretchy will do.  A rubber band has sufficed when a bracelet is unavailable.   Have no fear: I have multiple extras in my purse, in the car, in luggage when we travel, etc.!

What's interesting to me is that he is quite particular about making sure that a bracelet will be waiting for him when he's done with an activity during which he is not allowed access.  This morning he carefully placed a bracelet in the very middle of the back seat of the car, knowing that it would be there for him when I picked him up this afternoon after school.  It was the first thing he reached for when he got in the car hours later!

What does this do for him?  I can't give you a definitive answer, but I will make an educated guess.   It keeps his internal busy-ness occupied.  

When self-advocates (those with autism who can communicate in some manner, tell us what they want/need,  and "translate" for us NTs - NeuroTypicals) discuss repetitive behaviors, many times they will say that it calms them when overwhelmed.   I can't say that it calms him.  In fact, he can get quite taken away with flipping the bracelet and vocalizing.  But I do believe that in circumstances that can be overstimulating (shopping malls/groceries, restaurants, crowds, etc), the bracelet gives him something to distract him from the overwhelming buzz that is our noisy, crowded world.  

Preparing for middle school

I mentioned in one of my last Autism Understanding and Acceptance posts that Thomas' hours for ABA were reduced by Anthem.  With the help of some contacts, we were able to get his full time hours extended to mid-August, instead of the reduction starting July 1st (insuance cut his hours so he could get services from school...in JULY).  Rob and I decided not to fight the reduction in hours with this new start date, and to give middle school a try.

This equally terrifies and excites me.  He will be at his home middle school for most of the day, from 9am to 2:36pm.  Not 2:35.  He will then go to BACA Prep from 3:00pm to 5:30pm, which will not give him the 20 hours of ABA for which he is approved, but will allow us to have dinner together as a family at a reasonable time.  We just couldn't see keeping him at BACA until 6:30pm.  That would be such a long day, and then we aren't eating until at least 7:30, which doesn't work for us - it's just all too late.

It's all a big experiment.  We are thrilled with his teacher for next year, and truly feel that he is in the best possible situation with this school.  We had a very positive and easy Case Conference in May. And I remind myself daily that it is not going to be perfect , that I can't keep him safe and protected from teasing and harm and hurt feelings for his entire life (wait, can't I?), and that I need to give him opportunities to rise to the occasion and spread his wings.

Oh, this is hard.

On a lighter note, there are other considerations to be made when preparing for middle school.  It is time to retire the adorable Gymboree underwear.  It's going to be enough of a challenge for him in the bathroom because he hasn't quite gotten the swing of NOT dropping his pants to the ground when using the urinal.  We're working on this important life skill quickly.  But we also just tossed the Gymboree undies with turtles, dinosaurs, baseballs, etc and switched them out for Fruit of the Loom briefs in dark solid colors or stripes.  Very cool and certainly not baby-ish.

I figure that he's going to get teased for something, so why invite it with something so glaring as cutie-patootie undie-pants?

Quilt square, singing in church, zoo roller coaster

Sometimes an ordinary day turns out to be extraordinary!

The plan for our Sunday was going to church, then joining in the church group trip to the zoo.  Thomas attended Sunday School before the service, and the project today was making a prayer quilt.  Each kid got to create their own square, including Thomas.  We heard that he had drawn two hearts on his square, one for Mommy and one for Daddy.  (*swoon*)  But even better, I just got this Facebook message from the daughter of a friend of mine at church:
Hi Suzanne! It's M (K's daughter) and I was in the room today with Thomas. When we were preparing to pass out the stuff to make the quilt he was reading his Disney bracelet to me and telling me about Disney World. Also, his quilt square had two hearts he drew on it saying that one was for Mommy and one was for Daddy. After telling my mom this, she said that I should tell you because you love hearing about his day in Sunday School!
Yes, dear young woman, I DID want to hear about that!  Hooray!  He told her about Disney?  That was over two years ago!  And what did he tell her?  I will need to follow up on that.  Thank you, thank you lovely young woman for talking with him and asking him questions and working with him!  The youth of this church give me such incredible hope for the future.

During the service, he was his usual snugly self.  He cuddles in with either Rob or with me for good chunks of the service, which truth be told, is one of the main reasons why I am not singing with the choir full time.  How could I voluntarily miss that time?  And if I had not been there, I would have missed him singing along with the entire Doxology today.  Yes, he was making up syllables instead of singing the words, but it was so entirely cute...and then came the last line.  The sopranos in our choir go up an octave for the last phrase of Halleluias, so of course he did too!  He was pitch-perfect.  Rob and I stopped singing, stared at each other in disbelief, and then laughed and laughed in amazement and joy!

Sack lunches were eaten at church, then off to the zoo we all went.  After the first obligatory wandering through the Oceans exhibit, he would do nothing other than head straight back to the train.  While we were in line, he was watching the roller coaster quite intently.

I'm going to have to do some background info here.  He had always liked roller coasters.  We started on State Fair kiddie coasters, moved up to the zoo coaster, then even got gusty enough to ride Big Thunder Mountain at Disney.  He loved it, and even wanted to get right back on, which we did.   He loved it the second time.  He likes coasters!  Great!  We heard fun things about this new coaster at Animal Kingdom called Everest: it looks like you are going to go over a cliff, but you back up "a little" (remember the "a little" bit), see a Yeti, then go forward and fast through the rest of the ride.  Sounds fun, right?  WELL, let me tell you, there is nothing "a little" about going BACKWARDS FULL SPEED AND IN A CIRCLE SEVERAL TIMES IN THE DARK.  Okay, once that was done, the coaster was fast and fun, but holy SHIT were we sick afterwards.  My dad, Rob, Thomas and I had to sit for about 30 minutes to recover while my sister found some Sprite for us to sip on to revive us.  After that, Thomas would have nothing to do with any roller coaster.   We even pressed it once last year, getting him on the zoo coaster - thinking that once he experienced that roller coasters didn't have to scare the crap out of you - he might like them again.  Nope.  "Get off.  All done.  Get off," throughout the entire ride.

I saw him eyeing the roller coaster nearby.  I asked him if he wanted to ride it.  "Yes."  I asked him a few times, several minutes apart.  The answer was yes each time.   As the cars pulled away and we were going up the first hill, I told him how happy I was that we were doing this, that it was going to be fun and he was safe.  He loved it!  Hooray!  And two and a half years of guilt for taking him on that horrible Everest evaporated away.

Autism Understanding & Acceptance 2013, Bonus Day: THANK YOU

The response I have gotten from this series of Facebook posts has been overwhelming to me. THANK YOU, all of you.


I had no idea what I was starting! It started as a fun little idea I had as Autism Awareness month began 30 days ago. I wondered how I could make this month actually increase awareness, because I know that when I look at numbers & statistics about autism I get numb. I started posting Thomas’ story, which turned into our family story, and all of your positive feedback and the love that was being sent propelled me on. I looked forward to every night, planning what my next topic would be and what picture I would use. It turned out to be quite a pivotal month for me. And honestly, while the feedback has been incredible, perhaps even more beneficial to me was the practice of writing on a regular basis, and being able to look back now and see our journey as it stands so far. We get so busy with today’s demands that taking the time to look back and see progress just doesn’t happen.

I will compile this into some manner of finished product. I have no idea where it will go from there, but I don’t necessarily need to know the final destination in order to take the first step.

Thanks again. I’ll keep posting as I have updates about insurance coverage for ABA, IEPs at school, and more exciting new things Thomas is doing. Hugs to you all.