Video of SPD as explained by a child

Click here for a very insightful video of SPD from the perspective of a child

This little boy is very similar to JC!

What is the Difference Between Sensory Processing Disorder and Autism?

What is the Difference between SPD and Autism?

The answer to this question is easy... I have no idea. Autism and SPD are both neurological conditions that can impact the way the brain perceives and responds to information.  But what are the differences?

This topic is of special interest to me.  I am currently struggling with whether or not Sensory Processing Disorder explains all of the intricacies of JC's behavior.  For example, at 18 months the assumption was made (not by me, but by medical professionals) that he would most likely develop autism because of his severe sensory issues and speech delay.  He was also showing several "red flags" on the M-Chat  at that time. But at his 2 year checkup, his pediatrician verbalized her surprise that he had shown marked improvement on his M-Chat scores and was not inclined to test him for Autism.  I believe that because of the early intervention and intensive therapy both during sessions and at home, he has shown so much improvement that Autism is no longer an assumption, but merely a possibility (and yes, it is still a possibility).  There have been new and worsening behaviors over the past few months and I can't help but wonder (and by "wonder" I really mean "over-analyze" and be "paranoid" about) whether or not he may actually have signs of Autism.  So the research behind this blog entry was as much for me as it was for any reader.  I needed to know the answer to the question: What is the difference between SPD and Autism?

I started my research with definitions:

One Autism publication that I found describes autism as "a group of developmental disabilities that affect a person's ability to understand what they see, hear and otherwise sense."
Wikipedia describes Sensory Processing Disorder as follows: "sensory information may be sensed and perceived in a way that is different from most other people. Unlike blindness or deafness, sensory information can be received by people with SPD, the difference is that information is often registered, interpreted and processed differently by the brain. The result can be unusual ways of responding or behaving, finding things harder to do. Difficulties may typically present as difficulties planning and organizing, problems with doing the activities of everyday life (self care, work and leisure activities), and for some with extreme sensitivity, sensory input may result in extreme avoidance of activities, agitation, distress, fear or confusion."

Am I the only one that thinks those two definitions sound exactly the same?

I have to say, those medical professionals who tend to believe SPD is a subset of another disorder may have a good point.  If we can't determine a difference by definition, then how can we diagnose SPD as a singular diagnosis?  However, I tend to believe that SPD can be a stand-alone diagnosis, even though it isn't spelled out in black and white.

So what does the research suggest?

Research shows that 80%+ of children (4 out of 5) diagnosed with Autism also have sensory issues.  But the reverse is not true.  Only 2 out of every 5 children with SPD are also diagnosed with Autism (1 in 20 children have SPD while 1 in 50 are diagnosed with autism according to a new data).   For boys though, the prevalence of both disorders almost doubles.
So there seems to be a definite difference in the prevalence of Autism and SPD, and the two are certainly not the same, but the question remains, "What is the DIFFERENCE between SPD and Austism?"  How can I know that my child, who has SPD, doesn't also have Autism?

I have researched and asked questions of therapists and medical professionals and this is the most reliable answer that I can find:

The Difference between Sensory Processing Disorder 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.

I hate to say it, but this sounds a lot like my JC.  Are his behaviors signs of Autism or just quirks?  I don't know... but I will continue to research and seek out professional opinions until I do know for sure.  But for now, I am feeling much more knowledgable and prepared to address his issues as they arise and to be the best advocate possible for the care he needs.

Update:  JC was actually diagnosed with Autism Spectrum Disorder.  For more information, click HERE.

Resources:

http://en.wikipedia.org/wiki/Sensory_processing_disorder
http://www.cbsnews.com/8301-204_162-57575282/1-in-50-u.s-school-kids-has-autism-govt-survey/
http://autism.lovetoknow.com/sensory-integration-disorder-autism
This is a great study that I found to describe the connection between symptoms of SPD and Autism actually studied the behaviors associated with SPD and how prevalent they were in children with Autism vs children without Autism.  Although most of the behaviors were described in the Autistic children, many were also found in the non-Autistic children.   http://www.sinetwork.org/pdf/tomcheck_dunn.pdf

Venting: Ignorance and The Media

I read an article about a mother who threatened a principal because her child wasnt receiving help and was having behavior problems. This hurts my heart. Yes, this mother was way out of line, but in a way I can understand from her perspective. Her child has special needs which the school, school system, and state apparently don't acknowledge. So he is labeled as a "behavior problem".  From her actions, it does seem that perhaps she contributes to the overall problem, but deep down the frustration has been felt by all parents of children with Special Needs. I can tell you, if one more person in the hospital said to me that JC shouldn't be crying because the IV blood draw wasn't painful, I can't say that I wouldn't have gone a little batty. What strikes me the most is one of the last paragraphs in the article:  

"There are so many diagnoses these days that every time they revise the DSM it seems there are a plethora of new mental illnesses to ascribe our everyday woes; what used to be an energetic kid is now ADHD, somebody who was very meticulous is now OCD, and violent kids are now SPD."

This "journalist" obviously did little or no research on the subject matter of Sensory Processing Disorder.  To attribute violence to a broad diagnosis is not only factless, but dangerous and to indicate that SPD (ADHD or OCD) is a label that is overused for our "everyday woes" is simply ignorant. 
It is media like this that leads to misconceptions and assumptions that do so much harm to our children. This is a perfect example of why I started this blog!

10 Ways we are Breaking all of the Rules, and Loving it!

How many times were we told as children: "Clean your plate", "Don't talk with your mouth full", "Don't play with your food"?  I'm not saying that our mothers, and those generations of mothers before us, we're wrong. But sometimes rules are made to be broken.  And when you are a mother of a child who has sensory processing disorder, often those rules are thrown out the window altogether. But that isn't necessarily a bad thing, and it doesn't mean that the children are running wild with no discipline at all. It simply means that the "rules" aren't as important as the development of the child.

Here are some ways that we are breaking all of the rules, and loving it:

1.  Don't play with your food:  A huge part of JC's therapy for tactile aversion is messy play and we often use food for this. If he can't stand to touch applesauce, he will never eat it!  So desensitizing him to the feel of those textures is an important way to pave the path for him to eventually explore them with his mouth. Creating a fun activity with those items that he avoids reduces the anxiety that he feels and will hopefully allow him to associate food with fun rather than pain, angst and fear.

2. Clean your plate:  When a child has anxiety related to food, adding to that anxiety by forcing them to eat is going to be counter-productive. I have even found that limiting the amount of food that I put on JC's plate helps this anxiety level a great deal. If he has more than a few bites on his plate at once, it seems too overwhelming and he will push the plate away and refuse to eat altogether.  Likewise, if there is more than one type of food on his plate, its harder to get him to eat anything at all.  So I try using separate bowls so that he can focus on one item at a time.  It also helps that he knows he can push one bowl away and still have the other to eat from.  I also only put a small amount out at first. If he starts to eat it, he will usually ASK for more which gives him a more proactive role in the meal-time process.

3. No dessert until AFTER you clean your plate:  Let's face it, if JC hasn't eaten in 2 days and he asks for a cookie, I'm going to give it to him. With his food allergies, there are very few "treats" that he can have but he can have Oreos. I have found that ANY form of eating usually leads to more eating so I will allow the cookie on occasion to break down that wall of resistance to food.  After all, the anxiety and aversion isn't because he isn't hungry, or because he is being difficult. It's because during those periods he simply cannot stand the thought of putting food in his mouth. If we get be done that, the result is eating... No matter what it is that he is eating.  And sometimes I will add a cookie to his dinner plate with a banana or a bit of chicken. Seeing the cookie helps him to not reject the plate immediately.

4.  He is too old for a bottle:  Well, ok. Maybe he is.  My older son was bottle-free at a year old and JC is 28 months old now.  Am I just too lenient?  Am I loosing my touch as a mom?  Have simply decided that at this point, pushing JC to give up the only source of nutrients that keeps him healthy and thriving would do more harm than good. Maybe I'm wrong, but with all that he has been through, having a bottle is the least of my worries.  And yes, I have tried to transition to a sippy cup. He seems to have difficulty in drinking from a sippy (oral motor skills problem) and often ends up choking are spitting/drooling the liquid out of his mouth.  And remember, we are talking about a child who hates to have certain textures in his mouth. A hard rubbery sippy cup spout seems to be one of those textures. I should also note that JC never used a pacifier. The bottle also gives him that oral stimulation of sucking that many children with SPD continue to need beyond infancy.  Ok, enough about food...

5.   Don't climb on the furniture:  Movement and climbing I a necessity for many children with SPD (see JC's Extra-Special Needs ). So how do you encourage that movement when its 40 degrees outside or raining?  Furniture jungle gym!  Yes, there are limits.  JC would love to climb up the stairs on the outside of the railing like a  monkey if I would let him. But what I can do is provide a structured play area where he can get this type of physical activity. Today we used an ottoman and chair and JC climbed from one to the other and then jumped off into my arms. We also sometimes create a maze of bar stools for him to climb under and through.  Bottom line:  climbing is good, as long as it is safe and supervised.

6.  Don't climb UP the slide, use the stairs:  Climbing up the slide is one of the most available and effective activities at providing a workout in balance, heavy work, and proprioceptive input. We have a rope hanging over the slide outside of this very purpose. JC loves to walk up the slide while pulling himself up with the rope.  Again, as long he is supervised and safe, I encourage that activity as often as possible.

7.  Don't talk with your mouth full:  Granted, this rule exists for the benefit of the onlooker more than for the child, but for a child like JC who exhibits problems with eating AND speech I will never squash either activity - even if they happen at the same time.

8.  Don't give gum to young children:  I realize this is a safety concern, and as I have already mentioned, this activity also needs supervision. For children with problems related to oral motor skills, chewing gum is a great way to strengthen those muscles.  It also provides that oral sensory input that many crave.

9.  You should not co-sleep with your children:  At some point, after months of sleepless nights, I decided that forcing my infant to sleep in a separate room wasn't worth the agony that it was causing for him and for me. That was 6 years ago when BB (my oldest) was an infant. It was a survival mechanism.  I was exhausted from getting up 5 times a night to soothe him and I refused to use the "cry it out method".  At that point I knew nothing of SPD, but I think he would have benefited from a weighted blanket.  But once we started co-sleeping, we both were much happier.  So when JC was born I vowed not to even fight the battle of sleeping apart.  As I have mentioned, JC was a miserable infant.  He cried most of the time and nursed constantly.  He had severe reflux and spit up most of what he at so he was hungry an hour later.  There was no way that I was going to get up every hour to feed him!  So, he slept with me. It was the only time that he seemed at ease.  He is now 2 and still sleeps with me.  Our bedtime routine is a soothing, enjoyable experience unlike the hours of struggle that I put myself through with BB.  Bedtime became a time that we both dreaded.  Co-sleeping is a personal decision.  I'm not saying that every person should do it and if your child is happy sleeping in another room - great. But I wish there wasn't such judgement placed on those of us who do.  It is in fact very natural.  I recently read about  study that looked at various cultures and their sleeping methods.  They found that children in those cultures that accepted co-sleeping were much less anxious and were more secure in their emotional attachments.  (Read the article HERE - its a great read!) For a child like JC who struggles with anxiety - co-sleeping may help to soothe him and provide that attachment that he knows is always there.  Plus, some SPD children crave the pressure of weight or feeling of touch on then while the sleep - JC is definitely one of these.

10.  Don't coddle that child!:  This one probably sends my blood boiling more than any of the others. JC doesn't have a behavior problem. I am not coddling him by "giving in" to his needs. I am creating an environment that is suitable for him to feel safe and comfortable. When your child has special needs, you see the world through their eyes.  I walk into a situation and immediately evaluate what he may have difficulties with and try to avoid or accommodate his needs. Are the lights too bright? Maybe we can sit somewhere else.  Is the crowd too loud? Maybe we can use headphones.  Is there too much stimulation for him to focus and listen to me? Maybe I can provide an activity that channels his focus so that he doesn't become overwhelmed.   If he is overstimulated and needs to bury his head in my neck and have some mommy snuggles, then I am happy to provide that safe place for him to feel at ease.  Trying to get him to go outside of his comfort zone may be necessary in some situations, but at 2 years old he doesn't understand that. So it is important to him that I am there to help him cope and adapt, not just change his behavior.

Breaking the rules is working for us. And we are creating our own rules along the way.

Illness in the Sensitive Child: Tales from the Hospital

Its amazing to me that even in a place like a hospital emergency room, surrounded by people in the medical community, I found myself explaining Sensory Processing Disorder.

JC was admitted to the hospital due to dehydration from a virus.  He had been vomiting blood for hours by the time we were seen.  For a child who doesn't like to have certain textures enter his mouth, having them come out of his mouth is quite unnerving.  He was so weak and frail when we were checked in that he couldn't put up much of a fight until the needles came out.  I am going to break it down step by step and explain what I witnessed and what I think he was experiencing:

1) They secured the rubbery tourniquet around his arm and poked around for a vein:  JC began screaming at the instant that the tourniquet began squeezing.  Often for children with SPD touch, textures, pain - anything - can be felt more intensely than for others.  So just this squeezing along with his hand going numb created quite a disturbance in body.   The nurses tried to reason with him about the next part.  "I need you to be really still OK?"  I don't know any 2 year old that would understand, much less listen to that, and especially a child whose heightened senses in a traumatic situation have left him unable to listen and reason.  I tried to explain, "He has a hard time understanding in situations like this". 

2) The needle stick: Well, no one likes that part. But for JC, the pain didn't stop after the needle was in.  It was as if he felt every pulse of blood that they removed.  He screamed and cried, his body tensed and shook with frustration, and he squirmed and kicked the entire time.  In most cases, once the needle is in - the pain stops.  But for JC, it seems to linger and even become worse as the needle stayed and the vials filled.  And unfortunately, they had to do this three times because the veins were not cooperating (and neither was JC).  He hated being held down and the intensity of the emotions, anxiety and over-sensitivity to the touch of everything going on was impossible for his body to process.  He was pitifully crying to me "Mommy, 'a' da'" (all done).   The nurses kept explaining to me that "this part doesn't hurt him".  I finally snapped back, "he has Sensory Processing Disorder - Everything hurts him!".  They weren't trying to be inconsiderate - they just didn't know.  And afterwards, they actually cared enough to ask me more about it.  Bonus points for them!

3) Once the agony of the needle stick and the blood draw was over, the IV was attached.  This part was less aggravating, but likely it was because he was exhausted.  But the tape, the board to keep his arm straight, and the wrapping around the board and arm combination were too much for him.  He immediately began pulling and tugging and finally gave up and accepted it when I began pretending as if he were a robot with a stiff metal arm and a cord that plugged him into the wall.  Whew!  That did the trick!

4) The move out of the ER and into the room was fairly well accepted except the elevator ride. The feeling of suspended movement didn't sit we'll with JC and I had to keep him from climbing out if the bed to escape.  Once in the Room the beeping of the IV pump, the dripping of the fluid, even the fact that the TV was on the wall but the sound was coming from behind his head were all very unsettling. But at 1AM he was exhausted and was ready for sleep. It was a restless night with several episodes of waking. No one sleeps well in a hospital. 

We managed to make the best out of the situation. The IV pole became a train, the walks down the hall helped him understand where he was and the bumble bee bulletin board at the nurses station became a focal point to ease the cabin fever.  The first day was filled with confusion, fear, meltdowns and frustrations. Each time the nurses came in to take his vitals or change his IV bag, he would cling to me and cry.  But it did get much better as he started to feel better and as he became accustomed to the new situation. By the last day he was holding his arm out for the blood pressure machine and his finger out for the pulse ox machine. 

Through all of the questionairres about medical history and food allergies, no one seemed to know much of SPD.  I found myself explaining why he doesn't eat, I received the "we'd prefer that you not co-sleep" (although I climbed in the bed and snuggled him anyway), and I was asking each shift to make sure that they let me explain things to him before they just come in and take vitals etc.  So why isn't the medical community more aware of SPD?  It is a relatively new diagnosis and is still not accepted by many in the medical community.  It isn't that the experts don't believe it exists, but they don't believe there is enough research and evidence to make a stand-alone diagnosis.  They feel that SPD is simply a symptom of a another disorder such as Autism, and by diagnosing SPD by itself you may be missing that underlying problem.  If you tell a nurse, physician or any person in the general public that a child has autism, asperger's or is on the autism spectrum - they are inclined to immediately assume that the child will be more sensitive to stimuli, environmental changes, touch, sound etc.  But in reality - those sensitivities are a component of SPD as much as they are the other disorders, they just aren't recognized as such.  With more research, this may change, but until then it is my responsibility to speak up when something relates to JC and his special needs.... just as any mother would do for her child.