Rule #139: The disorder is in the details.

Evan has Autism Spectrum Disorder (ASD).  Now that you know the ending, I’ll explain the details. First, a summary of Evan’s first three years.  

6 - 15 Months
From the time Evan was supposed to hit his first milestones, like rolling over, he was almost always behind and uninterested.  Meghan was concerned, and I was not, as I had heard of such delays and this was my first child.  Her concerns mounted as he neared 15 months and was still behind on many milestones. Not only milestones, but a lack of connection to his surroundings. He seemingly wanted nothing, needed nothing, and did not care if he was alone or with company.  We changed pediatricians after he was not concerned (see Rule #51), our new one referred us to Early Intervention.

15 Months - 3 Years
We met with therapists of Early Intervention at that time, who said Evan was indeed delayed, had no obvious disorder, and qualified for in-home therapy (see Rule #63).  He met with a therapist from then until he was 3 years old.  During that time he made dramatic progress, and he opened up in so many ways, especially speech and communication.

3 Years +
When he was 3 he had a 3 year evaluation by Early Intervention to see if he still qualified for services.  Amazingly and wonderfully, he didn’t.   He did still start in a special needs pre-school at Holbrook Elementary (see Rule #119) that fall because we liked everyone we had worked with through Davis County and we still had concerns about his social interactions, especially with other children.  They did a 6 week observance to see if his learning was impaired socially.  Wonderfully again he did well and did not qualify (see Rule #120).

And so things seemed to be going well.  Until December.  Up ‘til this point Evan was a champion sleeper, sleeping 12 hours every night.  One night Evan woke up terrified, eventually he told us that he was scared of ‘the yellow’ in the corner of his room.  All but one of his walls are a very light yellow.  He was scared of a certain corner, and we put up a pillowcase where he pointed to cover the yellow.  This mollified his fear, but he continued to wake up in the middle of his sleep, usually after midnight, and he would stay wide awake for several hours. He was no longer acting frightened, he was just awake. This has continued month after month to this day.  As you can imagine, it’s quite disruptive to daily life for one or both of us to be awakened so frequently.

After months having no success in bringing his sleep back to normal, our pediatrician referred us to a sleep specialist.  We met with her in March or so, and she was surprised by our story, and did not know what the cause was or what to do.  She seemed to specialize in more obvious problems like airway issues.  We mentioned his developmental issues and she said that kids with autism and other disorders are notoriously bad and sporadic sleepers.  Along this line she referred us to the Children’s Center in Salt Lake, suggesting that treating him behaviorally may help his sleep.  She also gave us a drug to try, which we avoided for a month. We eventually felt like we had run out of options and tried the medication, which did nothing.  

Since the drug didn’t work, and we didn’t want to just try more drugs, we called the Children’s Center.  They are extremely busy, and we had to wait 3 months before our first appointment.

In the interim, Evan had a few months out of school, and he had many play dates with a cousin who is almost a year younger than him.  I noticed that his younger cousin seemed to be quickly outpacing him. My concerns were growing.  Meghan was doing well at normalising Evan’s unusual behaviors, except sleep of course, which is still very disruptive.

Finally just before Evan’s fourth birthday, we met twice with Dr. Goldsmith, a psychologist of the Children’s Center, a few days apart.  We filled out several questionnaires about Evan and talked in depth for several hours.  Evan was there for the first appointment so that he could be observed first hand as well.

He is very knowledgeable on the subject, working primarily with 3-4 year olds, and was careful to listen to everything we had to say and looking at the forms we filled out.  After all was taken in there was no doubt in his mind.  Evan is autistic.  Specifically the new disorder (as of next year) is Autism Spectrum Disorder.

The most current understanding is that many behaviors fall in a general category of autism.  They vary both in severity and individually.  By this I mean that each behavior associated with the spectrum may or may not appear in a given individual on the spectrum.  Aspergers was a specific common grouping of autistic behaviors that is being merged into the spectrum.  So in Evan’s case, he has many behaviors not associated with more severe autism that helped early intervention and the County overlook his autism as simply a delay.  Evan has good eye contact, lets people touch him, talks well and communicates his needs often, among others.  While these are not typical of severe autism, they do not mean he is not on the spectrum but as Dr. Goldsmith said, give him a very good prognosis for being able to overcome his ASD by the end of elementary school.

As stated before, the disorder is in the details.  These are the primary behaviors that are concerning and have given Evan this diagnosis.

1. Sporadic Sleep.  His sleep issues I talked about already.  

2. Hand flapping.  Perhaps you’ve seen Evan excited, when he is, he clasps his hands together and shakes them wildly, his entire body spasming to some degree.  This is not really disruptive, but to the Dr. it was like a red letter ‘A’ on Evan’s forehead.  The fact that he clasps his hands instead of flapping them separately helped this behavior go unnoticed by the County.

3. OCD.  Evan has a number of obsessive behaviors, such as lining up his toys, following lines and wanting things closed.  He is also very repetitive in his speech. Quickly memorizing songs, reciting the lines to his shows, or even mimicking the background noises. Fortunately these are often mild, but they are there.  Dr. Goldsmith said that ASD and OCD are ‘close cousins’ and that almost all kids with ASD show some OCD behaviors.

4. Restricted, Behavior Rigidity. Evan does not like change, and will do things the same over and over again.  The Dr. pointed out that many of us have this to some degree, so the degree is really the focus.  A large majority of Evan’s tantrums and meltdowns are about things not being done the same order or in the order he wants them done in.  In addition to order, he will hyperfocus on a small number of things, and pursue them to the exclusion of all else.  We’ve had good success getting him to change tracks, but he then frequently sticks to the new track.

5. Lack of Narrative Speech.  We thought Evan was good to go in the speech department.  And that’s because Evan does talk in sentences and enunciates well.  He does not however, give narratives or recall past events in typical fashion.  For example, he doesn’t tell us about his day at school.  He can’t go back and think and then communicate “First we did this, then we played that, etc.”  We’re lucky if we can guess at an activity and get him to confirm that he did it.  Also when he does recall things, he’ll again focus in and recite one event using the same words over and over.

6.  Misunderstanding of Social and Emotional Cues.  Evan does not communicate or play well with kids his age.  If it’s a very small group and play is guided by an attentive adult, he can do well.  But he will rarely respond appropriately or at all when spoken to or asked a question by a peer, especially ones he is not already very familiar with. When he doesn’t respond the way they expect they quickly lose interest.  He also seems to lack empathy, when anyone is sad or angry, he will almost always laugh or occasionally meltdown.  There are many details in this category and it’s very concerning to us for his long term happiness that he will have difficulty forming healthy relationships. We know he can and does form relationships. He loves and interacts uniquely with his parents, his brother, grandparents, his cousins etc. All of this is wonderful and we hope that this area will improve throughout his life so that he will be more available to friendships and fulfilling relationships.

7. Bowel Problems.  Evan does not ‘squeeze brown’ in the toilet.  In Evan’s own words he squeezes yellow and brown.  He has been potty trained peeing in a toilet for a long time now.  Meanwhile, I could count the number of times he has stooled in the toilet on my hands.  It seems to cause him discomfort and he has high anxiety over it.  He also goes too long between stooling, often only two times a week, as though he is constipated.  Like sleep this is not something used to diagnose ASD, but is none the less very typical of the spectrum to have physical gut and bowel issues.

The good news is that an official diagnosis opens up many doors for programs and treatment.  Including qualifying for help from the County.  There are many programs available at the Children’s Center in Salt Lake that we hope will further improve Evan’s behavior.  Behavioral treatments seem to be centered around getting into the child’s world on their level through attention and play, and helping them connect and expand.  This comes from us, therapists and our many family member and friends.  Thank you for your prayers and your support.