Scripts and Social Stories

Scripts

I often say that JC has "scripts" for various social situations and when these scripts aren't followed, his anxiety level rises and he often cannot function.
Think for a  minute if you went to a foreign country.  Rather than driving on the right side of the road, everyone drove on the left. And what if instead of eating at the table, you ate on the floor. And instead of sleeping in a hotel room you slept outside.  Twins would all be very unnerving.  ESPECIALLY if no one warned you about it.
JC relies on routines so heavily to give him the understanding of what to expect in situations. He then develops a script in his mind as to what that situation should look like (for us, things like: we drive on the right side of the road, we eat at a table, we sleep in a bed in a hotel).  And if that script changes (especially without notice) his expectations aren't met and he cannot adjust by himself.

I think of it like this:
JC lives in a box - his comfort zone.  He has all of his rules and scripts setup inside that box like wallpaper.  Sometimes he allows someone in there with him, but they have to also follow his scripts or he quickly kicks them out.  Occasionally he will venture outside of his box, but quickly retreats back inside the safety of that comfort zone when life gets overwhelming.   The walls of the box are always changing.  Sometimes, they are like clear plexi-glass.  He can look through to the outside world and sometimes interacts by meeting you half way.  And other times, the walls are made out of bricks and there is no getting in or out.  The majority of the time, I would say the walls are made out of sticks.  Strong, but able to be permeated with the right tools.  And just like we build our houses to protect us from the elements or rain, wind and sun - JC has built his box to protect himself from the unknown, the unexpected, and the unexplained elements of his world.

So how do we get through into JC's box?  Certainly not by knocking the walls down like the big bad wolf or trying to drag him out kicking and screaming.  We have to remember that this box serves a purpose for him.  So we work to be included in the box, then from the inside out we can gradually adjust the structure, add to or change the scripts and maybe chip away bit by bit at the rigid walls.

This is why we use visual aides and social stories.

What are Social Stories?

Social stories help explain what is expected in certain situations. They can be simple short stories (we use pictures along with them) that describe a social situation and give the child a "script" to follow when one is not readily available already.  For our example above, it would be like sending us to a foreign country with a guide book that says "we drive on the left side of the road, eat on the floor and sleep outside".  All of a sudden our experience isn't surrounded by anxiety and uncertainty.  We may not like it - its still outside of our comfort zone - but at least we know what to expect.

Social Stories contain certain types of sentences that describe social situations and explain in detail what is expected in those situations.

• Descriptive Sentences: these are statements of fact... e.g: "Sometimes I ask for a cookie"
• Perspective Sentences: these are statements that refer to or describe an individual’s internal state, their thoughts, feelings, beliefs, or physical condition…e.g. “I like cookies"
• Directive Sentences: these describe desired responses to social situations... e.g. "If Mommy says "no" I don't scream or cry"
• Affirmative Sentences: these often express a commonly shared value or opinion within a given culture…e.g. “I can wait or choose something else"

It seems simplistic but after hearing the story several times, the concept is engrained and when the situation arises, a simple reminder will help ease the anxiety of the situation.

In addition to molding behaviors, another important reason to use social stories is to provide preparation for the unknown. We went on vacation recently and used a social story so that JC would have a preview of what to expect so that all of the new sights and activities wouldn't overwhelm him. They are a useful tool, along with visual schedules and first/then cards to alleviate stress in day to day activities.

SPD.... Could it be more? How SPD can Affect Speech, Attention, and other behaviors

Now that we know what Sensory Processing Disorder is, and how it can affect a child's day to day activities, lets talk about how it can affect other aspects of a child's life - even mimicking disorders like OCD and ADHD.

SPD and Speech Development:  

JC has a significant speech delay.  He is doing well and is learning new words each week through therapy but he seems to still struggle with certain sounds which may require him to utilize motor skills which he has not yet mastered.  If you think of the normal course of a child learning to talk... they spend months "hearing" speech, months "watching" your mouth when you speak, and months prepare their own mouths for speech by babbling.  They also develop their own motor muscle skills through mouthing objects and eating.  Now imagine a child with SPD, like JC.  JC spent months being preoccupied by pain stimuli from his food allergies and health problems related to that.  He spent months crying to tell me that his world just wasn't right.  He spent months NOT eating.  So you can see how having SPD affected JC's speech even before he was ever able to speak.  He never received those auditory or visual cues that are the building blocks of speech because he was "distracted" by other stimuli.  He also has some motor skills problems that affect both eating and speech, but SPD early in life certainly contributed to his speech delay as well.
Another key aspect of speech development is processing language that is heard. With children who have issues with sensory processing, there may also a breakdown in the way the brain interprets auditory input. For example, if you imagine yourself at a party or in a crowd, you are able to key into someone's voice and maintain a conversation by "tuning out" the remaining sounds. However, for someone with SPD that ability is minimal. Therefore, they hear all sounds at once. Imagine yourself in a crowded elevator with the music playing and 5 conversations happening at once. You may hear a jumbled mess of sounds but picking out words or sentences will be very difficult.  Now imagine that you are an infant learning to speak in that elevator.  The inability to discern and process those individual sounds makes understanding, learning and then repeating very difficult.

SPD vs ADHD:

Similarly to the difficulty in discerning auditory cues, another aspect of SPD may be the inability to discern visual cues.  Both of these issues may manifest during school years as a failure to focus or pay attention.  In most cases ADHD is suspected but in many of these cases the true culprit may be SPD.  The difference between the two isn't seen in the symptoms, since they can both exhibit the same synptoms.  The difference is in the cause behind the symptoms.  Does the child show a difficulty concentrating on a constant basis or only when overwhelmed by sensory stimuli?  Does sensory activity help alleviate this symptoms?  Its the Who, What, When, Where and Why that goes into a diagnosis that makes the difference evident.  This is why it is important to be aware of SPD and the possible implications it may have for a child.
I have heard it said that SPD is the new ADHD, insinuating that it is an overused diagnosis that explains away behavioral problems.  But I would suggest that SPD has in fact been an overlooked problem for years and that many diagnosed with ADHD are actually suffering from SPD.  In fact, one study found that over 95% of children who had been diagnosed with ADHD showed improvement after occupational therapy.  This suggests that at least some component of the ADHD diagnosis was actually SPD.

SPD or OCD:  

I can tell you that I have questioned many times whether or not JC may have OCD.  There are times when I cannot alter our daily schedule without a meltdown.  There are times that I have to backtrack and re-do the same thing again because it didn't happen the "right" way the first time. For example, if we leave the house and I push the button to open the garage door I hear a wail of screams.  JC usually pushes the button and if it doesn't happen that way, he cannot move forward until it does.  So, we close the garage door and HE pushes the button again.  There are many of these little nuances that all add up to a very long day at times, but is it really OCD?  Most likely it isn't.  It is simply a manifestation of SPD.

The best way that I have seen this link described was this:
If your child is hypersensitive to information coming in through her senses — that is, she perceives a threat from a touch or sight or sound that others would find harmless — she may set up routines and defenses for herself that could be mistaken for OCD. Additionally, if she has problems with planning out how to do a particular activity, she may become strongly attached to the one way of doing it that she has already worked out, or she may stick stubbornly to activities that are much simpler.
A child with OCD is obsessed with things that aren't real and develops compulsions to deal with them, whereas a child with sensory integration disorder is bothered by real things in her environment and develops routines and defenses to deal with them. If you can change those real things, you can most likely change the behaviors.

This is EXACTLY the case with JC.  Changing the environmental factors affecting the behavior (perhaps the anxiety of the morning routine) may lead to a reduction in that behavior (insisting on opening the garage door himself).  However, one developmental psychologist that we recently met with believes JC to have an anxiety disorder with OCD tendencies. I'm not quite convince of this just yet. But I do see the possibility. (This sounds much like JC:  http://www.ocdsite.com/how-to-identify-ocd-symptoms-in-toddlers/)

SPD and Autism

Autism is usually characterized by 3 things: impairments in communication, social interaction, and by repetitive behaviors (such as self-stimulation: "Stimming").  Each of the 3 are required for an Autism diagnosis.  Sensory issues may play a large role in any of these factors, but a person with autism usually experiences many other symptoms besides sensory issues.  For example, according to "Love to Know Autism" a child with autism may have limited to no speech, difficulties understanding word contexts and developing a vocabulary, a need for strict routines, obsessive interest in an unusual activity or problems with social cues.  But a child with SPD alone may only experience issues with sensory input. (more about The a difference between Autism and SPD)

Distinguishing between each of these disorders is very difficult as a mother. I feel so blessed to have a wonderful pediatrician and great therapists for JC who help me navigate through these issues.

References:

http://www.chicagospeechtherapy.com/chicago-speech-therapy-the-effects-of-sensory-processing-disorder/

http://www.netplaces.com/sensory-integration-disorder/look-alike-problems/obsessive-compulsive-disorder.htm

http://www.sciencedaily.com/releases/2005/05/050513103548.htm
http://sfari.org/news-and-opinion/news/2012/new-rules-allow-joint-diagnosis-of-autism-attention-deficit
http://www.spdfoundation.net/otherdisorders.html