Causes: Autism Awareness Month, A Parent's Perspective.

My second guest poster on the topic of Autism Awareness Month is an internet friend, Nicole, from my Myra's Due Date Club.  She was due with her youngest the same month I was due with Myra.  I have heard bits and pieces of her older son's story, but reading it in its entirety was different.  Even though we've never met in person, it warms my heart to know sweet kiddos like hers are in such good hands.  Thank you, Nicole, for sharing Liam's story.

I still remember the day I found out we were expecting my 2^nd child. I was absolutely overjoyed when I saw those two pink lines. Thinking about it still makes me smile. My pregnancy with this little boy, whom I would later come to know as Liam, was not without event. The doctors told me that he was going to be miscarried. Despite their predictions, he lived. My cervix began “funneling” at about 18 weeks, which is a fancy way of saying that it was basically starting to open. They told me that he would most likely be born early, and that he could even die because he would be too early to be viable. He stayed. He lived. He grew and thrived. I developed preeclampsia toward the end of pregnancy. They laid out all the risks to him and to me. But by then I knew better. I knew that he strong. I knew that he was a fighter. I knew that he was a force to be reckoned with. And mostly, I knew that my God must have big plans for this boy that was spared from death so many times before even being born.

He was born a few weeks later. He did not cry. I only caught the briefest glimpse of him before he was rushed away. A small crowd of nurses worked on him. The room was so quiet. No one spoke. I kept asking if he was okay, over and over and over again, sure that no one was hearing me. Finally a nurse came over and took my hand. “We don’t know,” she said. “They are doing everything they can.” I don’t think I will ever forget that moment. It was like I’d been punched it the throat. My miracle baby, my sweet boy who had already defied death many times over, might die. After the longest moments, I heard a nurse triumphantly declare, “Okay! He’s breathing! Let’s get him up the NICU.” He lived. He was strong. He was a fighter. He was a force to be reckoned with. God had spared him, yet again.

Liam was such an easy baby. He was truly a joy. He ate well, he slept well, and he rarely cried. As the months went on, his tumultuous start to life faded more and more into the background. He was alive. He was healthy. We were blessed.

As he grew, there were times when the little “mom alarm” bells would go off in my head. His core strength seemed low, he was constantly a bit late with milestones, and something just seemed different about him. My fears were eased by the pediatrician. He told me that all kids developed a little differently, and that there was nothing to worry about. I couldn’t put my finger on it, but in the deepest place in my heart, I knew something was different.

 

The first big clue was when he was still completely non verbal at 18 months. A lot of people told me that I was making too much of it. Plenty of kids didn’t talk well until later. It wasn’t just words, though. He didn’t grunt, didn’t point, and didn’t babble. He didn’t gesture, or attempt to mimic any sounds. He was silent or he was crying. There was nothing else, there was no in between. It turned out that my hunch was right. He was evaluated and diagnosed with a significant speech and communication delay. He began speech therapy at 18 months old with the communication skills of a 7 month old.

Through all of this, the idea of autism was readily brought up and dismissed by the developmental pediatrician, by the speech language pathologist, and even the audiologist. He didn’t look autistic. He didn’t seem autistic. He was sometimes willing to have “shared attention” which is not a typical trait of autistic kids.

He had a follow up with the developmental when he turned three. He started to ask a series of questions. I was a bit taken aback by them, and even more so by my honest answers.

Yes, he hates wearing socks. We buy him special ones that don’t have seams in them.

Yes, he hates wearing shoes. We have to get ones without laces that are a full size too big so he’ll even wear them.

Yes, he has difficulty with clothing, such as shirts with tags or pants with stiff seams.

Yes, he is obsessed with collections like rocks and cars. He likes to sort them, and line them up, and organize them, but he doesn’t really play with them.

Yes, he has a limited diet. He refuses to eat anything that isn’t smooth and white.

Yes, he walks on his tiptoes a lot.

Yes, he flaps his hands as well.

Yes, he melts down in loud or crowded settings.

Yes, he fixates on spinning objects like wheels or fans.

Yes, he seems to want to play with other kids, but he avoids them most of the time.

Yes, he is often off by himself when a group of children is playing.

Yes, he gets a vacant look and spins in circles when a room is too loud or too busy.

Yes, he mouths objects a lot more than a 3 year old should.

Yes, he avoids eye contact.

Yes, he shies away from affection.

Yes. Yes. Yes. Yes. Yes. Over and over again. Before the pediatrician even said anything, before he even finished asking the questions, it hit me.

These are traits of autism. He’s screening for autism. And I keep saying yes. It was both shocking and unsurprising at the same time. People had said over and over again that he didn’t seem autistic when he was younger. It was shocking that he could be. However, as I answered the questions out loud it all clicked into place. He was different. All the feelings that I had throughout his little life that he was different, that I couldn’t put my finger on were suddenly confirmed, right there in that room. We were sent for further testing from a child psychologist, which months later did confirm what the pediatrician and I both knew that day in that room.

Liam is autistic.

He is considered high functioning autistic. It was a realization that both rocked my world, and yet didn’t change anything at all. I felt more armed. I had more knowledge about what was going on, and I had a better direction to take to best help him. However, diagnosis and all he is still Liam. He is my sweet, funny boy that loves cars, and dinos, and mashed potatoes. He loves to run with his big brother and tickle his baby brother. He has an infectious laugh and a wonderful smile. He is bright, focused, and always tries his hardest.

Just over a year after he began, at about 2 and a half years old, Liam graduated from speech therapy. He went from testing at a level 11 months under his actual age to testing within the standard deviation of normal for his age. We were so excited! It had been long and exhausting. My husband and I had long conversations in the night about whether he would ever speak at all. We wondered if he would have a normal childhood, a normal life! Even his therapists were shocked and amazed by his progress. We credit God with every bit of his progress and we are so thankful and in awe.

Liam is currently in occupation therapy. His progress there is over and above what anyone has expected of him. I consider it a gift to watch him learn, and develop, and grow. He sees life through a different lens than most people. His progress is the unmistakable work of God.

Many people that I have encountered view autism as a disability. A disadvantage. A form of brokenness. But I don’t see it that way. It’s a difference. That’s all it is. A deviation of normal. And for my family, personally, it is a gift. Liam’s autism has changed our family. I now take very little for granted. I celebrate every small victory. I see more good in everything. And I praise God daily for the gift of having this slightly different little boy in my life. I’ve been asked by well meaning, but insensitive people, if I wished that Liam had been born normal. I tell them no with confidence. I have an extraordinary boy. Autism is a part of who he is. If he wasn’t autistic, he wouldn’t be the same Liam, and I love him just like he is.

A diagnosis of autism raises as many questions as it provides answers. It’s not well understood. It’s more of a classification of a combination of behaviors and traits. There is a lot of speculation about what causes autism, and no concrete answers. There is a strong correlation of a genetic component, but beyond that most guesses are shots in the dark. People blame everything from vaccines, to electronics, to GMOs, to ultrasounds. I choose to not guess. I choose to not speculate. I choose to not wonder because this is what I know.

Liam, like every person on this earth, was fearfully and wonderfully made. God knew him before the foundations of the earth and he knit him together in my womb. Diagnosis or no diagnosis Liam is exactly the boy he was created to be and he’s leading exactly the life he’s supposed to lead. God doesn’t make mistakes. Liam is perfect. He is strong. He’s a fighter. He’s a force to be reckoned with. God has great plans for this little boy.

 

Click here to see the post 'Causes: Autism Awareness Month, A Professional's Perspective.'

Click here to see a list of the other posts in my Causes series.

Causes: Autism Awareness Month.

Next up in my Causes series is a post by my friend, Kallie.  She is an Autism Specialist Social Worker and has many years experience working with individuals with Autism Spectrum Disorder (ASD) in a variety of roles.  Although she is a mom, her perspective is that of a professional.  Thanks to research and awareness efforts, we are hearing a lot more about ASD, but there are still many misconceptions.  I enjoyed reading and learning more and I hope you all do, too! (If you would like to get in touch with Kallie, please let me know by leaving a comment or clicking the Contact tab at the top of the page and I will be happy to connect you two.)

 

Autism is a neurodevelopmental disorder.  There are many misconceptions about cause and onset of ASD...some feel it is due to vaccinations, others to food enzymes, and others due to environmental factors.  There are also a lot of unanswered questions about Autism.  Studies continue to be done to find a common entity for individuals with ASD to see if a 'cure' or preventative action can be taken.  People continue to become concerned about ASD as the numbers seem to rise.  In my opinion, I feel the numbers rise due to the awareness we (professionals and parents) have of ASD.  Kiddos are being diagnosed significantly earlier than in previous years as well as kiddos that are 'higher functioning ASD' or Aspergers.  Some kiddos years ago never received a diagnosis and were just considered 'quirky'.  Now, I think because we have the DSM-IV and the DSM-V with particular criteria including other criteria that previously wouldn't have been considered, we're getting kiddos the diagnoses they need that make sense.

 

So, great, your child is diagnosed with ASD... now what?  That's where I come into the picture.  In the past I worked with kiddos on the spectrum doing ABA (Applied Behavioral Analysis) in a center and doing in-home based services.  Now, I am an Autism Specialist Social Worker.  Different roles completely... but helpful non-the-less!  In my opinion, there is nothing better than starting services as soon as possible... the younger the better!  Because kids on the spectrum lack social awareness (part of the diagnosis) it is common to see increased challenging or problem behaviors when something does not go their way.  Sure, I'm guessing a lot of you are thinking, 'well, doesn't every kid throw a fit when they don't get what the want??' Yes!  They do!  The difference here is that typically developing kiddos learn that it is socially unacceptable to throw a fit in public, or without end, as they get older.  (and yes, I realize this is still a struggle for some kids!)  Kids on the spectrum don't learn that.  We (parents, professionals, teachers, paras, therapists) have to teach them how to respond to situations.  We have to provide them with the information they need to know how to process the situation and respond appropriately, or move on to the next activity.  Does that make sense?  I'll give more examples...

 

Kids/individuals with ASD can only process what they've been given.  Think of the brain (any brain) like a file cabinet or Google.  Brains of individuals with ASD need to be filled with information.  If we were to search their Google, we're only going to get what we've put in it.  You'll find that generalizing one situation (place, time, season) is more challenging.  When there has been one experience in one place... it is hard to carry it to another situation without having experienced it.  When I worked with kids for this process, we'd teach as much as we could of a variety of skills across different settings (community, in-home, center, school, etc.).  If you think of typically developing kids, think of how they respond to things in different settings?  Doing homework at a desk at school is different than doing homework on the bedroom floor at home... Right?  Some kids that have lower functioning abilities and are maybe non-verbal often do really well with a visual schedule.  The more specific and step by step the schedule, the better.  Schedules that use pictures that are of that child and real life situations, make the most sense.  Using visuals and a schedule for everything one possibly can is the best route to go for these kids! 

 

The last thing that I want to talk about is reinforcement and behavior.  So, as I mentioned, it is not uncommon for children with ASD to have more temper tantrums that typically developing kids.  So how do we teach them and how do we make them stop?  Million dollar question, right?  Here's the answer... reinforcement.  A reinforcer is something that is strong enough to elicit a change in behavior.  This is much different than a motivator (helpful, but not strong enough).  Think of it this way... we go to work because we get paid and can pay bills, buy things, have fun... right?  Money is reinforcement for us to do our jobs, and do them well.  Most of us get paid at least monthly if not more frequently.  So, how are we 'paying' kids to learn?  How are we 'paying' kids to follow a schedule?  I know it sounds like bribery... but would we do our jobs if we weren't getting paid?  My guess is most people would not.  I know that I would not sit at work all day if I was doing it for free... Don't get me wrong, I love my job, but I also have to pay for things!  If we're going to teach kids how to behave, we want to do it with positive intervention.  That means, we are not going to say 'no, stop, don't' unless it is immediate safety related.  We are going to say 'quiet hands' or 'let's walk'.  We are going to provide other alternatives to self injurious behaviors (i.e. a kid who bites his hand when stressed might need a chewy).  We are also going to find reinforcers that will change behavior.  We are going to praise, give tokens, give points, to reward appropriate behavior (the things we want to see) and ignore or simply redirect the behaviors we want to get rid of.  Also, providing 4:1 attention to kiddos for appropriate behaviors is quite an essential. This means that for every negative interaction or redirection (stop, no, don't, do this, etc.) it is crucial to provide 4 positive attention actions/touches/hugs/looks/praise etc.

 

A lot of kids will learn that 'if I do this, I get this' which works in our benefit and against us.  For example, if a child has a meltdown in the store because Mom said 'no' to a piece of candy, and she gives in to give the candy because she's waiting in line and people are looking at her and it is easier in the moment to just do it... she's unintentionally reinforcing the behavior (yes, we are all guilty of this from time to time... just an example that is easy for most to relate!)  So let's break it down and look at this... child cries, mom says no, child cries more, mom gives in, child stops crying, child gets candy.  A child on the spectrum would likely pair this as being rewarded for having a behavior because that is what they are communicating at that time.  So, accidently what's happening is we are reinforcing the crying to increase or continue when there is a want... even if it just happens once every now and then.  It is kind of like playing the slot machines... we don't often win, but when we do we get a big pay off and it is worth enough to continue to try until it happens again.  This shows us that the candy (or the money from the slot machine) is a strong enough reinforcer that it gets us to continue to behave that way... I sure hope that makes sense!

 

I could continue to go on and explain more behavior perspectives of working with kiddos (and adults) on the spectrum... and would gladly do so if you have questions :-)  I hope this is helpful to anyone who wants ASD information.  I often get questions about behaviors and how to change them, that is why I decided to write so much about that.  Let me know if there's anything else I can do for you!

 

Click here to see a list of the other posts in this series.