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The Controversy of Sensory Processing Disorder
The term Sensory Processing Disorder (also known as SPD) has been circulating more and more in the parenting community and even the news. New Republic recently published an article explaining the disorder and the controversy surrounding it:
In the last decade, tens of thousands of children have been labeled with sensory processing disorder, a once-unheard of condition which advocates liken to a neurological “traffic jam” that prevents the brain from handling external stimuli and making sense of certain sounds, sights, smells, tastes, and textures. The Sensory Processing Disorder Foundation, a 35-year-old research and advocacy group based in Denver, claims SPD disrupts the everyday lives of more than four million Americans.
And yet the article points out that…
For some, this is sheer quackery. There is still little consensus within the medical community on whether SPD is an actual disorder, let alone whether many popular treatments work. Last year, the SPD Foundation failed in its decade-long campaign to convince the American Psychiatric Association to include SPD in the fifth edition of Diagnostic and Statistical Manual of Mental Disorders.
Even as a mom of two children labeled with Sensory Processing Disorder, I can honestly see both sides of the Sensory Processing Disorder debate. Every day I see the complexities of the “disorder” and how it can potentially be a sign or symptom of other disorders. Often the “therapies” that we use to “treat” the Sensory Processing Disorder are what should be typical childhood play. But I also echo most of what Stephanie Giese wrote about her experience with her son in her article “How I Know Sensory Processing Disorder is Real” on the Huffington Post:
I have no medical training. I am just a mom. But I’m also a teacher with a master’s degree in education that included several graduate level courses in child development. I know with certainty the difference between typical childhood behaviors and what I see exhibited by my son. This is what Sensory Processing Disorder is:
And she goes on to give examples of how Sensory Processing Disorder impacts her son and their family:
It’s toothpaste that is too spicy and ice cream that is too cold.
It’s making up excuses to avoid birthday parties because you know they will be too overwhelming, and you don’t want your child’s behavior to take the focus off of the birthday boy or girl.
So Why Do I Embrace the Sensory Processing Label?
Even with the complexities and controversy surrounding the disorder and it’s diagnosis, I am thankful to have the Sensory Processing Disorder “label” for my two kids. Here’s why…
- SPD is SOMETHING other than typical. Similar to Giese, I am “just” a mom and not a medical professional. But I am also an educated mom with a Master’s Degree and education in child development. I know that my children’s behavior goes beyond typical childhood challenges and impacts our family adversely. And when the Occupational Therapist confirmed this with the label of Sensory Processing Disorder, I knew that I wasn’t crazy or just a bad parent.
- SPD helps others take it seriously. Having the SPD label helps us to explain our challenges to others who might not understand.
- SPD gives us a community. The SPD label gives me a way to find others who understand what I’m going through as a mother and who can support me in these challenges.
- SPD helps us avoid medication. Please don’t get me wrong when I say this because I completely understand that some children do benefit from medication. However, generally, SPD is treated through alternatives such as occupational therapy, parenting techniques, and even play. So I am thankful to be finding ways to help my children before having to resort to medications. (Which is by no means out of the question if they end up needing it in the future.)
- SPD is a starting point. I also know that SPD is complex and might not be our only challenge. But it gives us a starting point for understanding our challenges and helping our children. And even linking their challenges to other potential issues.
- SPD helps my son feel better about himself. This might surprise you. But having the Sensory Processing Disorder actually HELPS my seven-year-old son feel BETTER about himself. It helps him to better understand his feelings and impulses and therefore find strategies for dealing with them. Which allows him to feel more in control and self-confident.
So while I’m careful to not let the Sensory Processing Disorder label completely define my children, I do embrace it. And use it as one tool – of many – to help me be a better parent to my unique children and their sensory needs.
[Tweet “The Sensory Processing Disorder label actually helps me be a better MOM!”]
Regardless of what others think; my children have Sensory Processing Disorder and I’m going to embrace it and use it to help them in any way I can.
More From Other Moms of Sensory Kids:
So what are your thoughts about Sensory Processing Disorder? I’d love to hear your thoughts in the comments below!
In an ideal world, labels would not be necessary, because environments would be flexible enough to adapt to all children’s needs, whether they are permanent or temporary, severe or mild.
For instance, my daughter’s preschool is very aware of sensory issues: they have a “quiet loft” and a single dining table for kids who need to get away from the excitement of the main group, they follow division-of-responsibility for meals (so no forcing/cajoling kids to eat), sensory activities are available daily but kids are never forced to partake in them, etc. And the staff is trained and willing to adapt the environment and routine to the needs of their pupils.
My eldest daughter is probably somewhere on the sensitivity spectrum, but in that environment, we do not need to concern ourselves as to whether it is serious enough to warrant a label or not, because the environment is already meeting her needs. She doesn’t need a diagnosis to get access to those tools.
Then, I understand that in some environments, the label is necessary to advocate for necessary adaptations or additional resources (like if a child’s needs require extra staff). But that’s kind of sad, isn’t it? Both for the kid who has to live with the “disorder” label; for the kid who is just below the threshold and does not get the help he needs.
Krissy @ B-Inspired Mama says
I do agree with you, Catherine. I dislike the “disorder” word so much. I actually think that’s the only real problem with the “label.”
So glad you have such a wonderful preschool for your daughter!!
My hunch is that little girls have it a bit easier too. I can tell people “she’s a shy, sensitive child” and they understand if she gets upset when play gets too noisy/rowdy, or if she steps away to play by herself in a quiet corner. *I* know it’s not the whole picture – there are all sorts of hints that point towards more-than-average sensitivity to sensory input, and at home, we’ve adapted her routines, environments and activities to help her deal with that. But I don’t need to explain because it’s more socially expected.
Tara Moore says
I do believe in it and I’m clear my 3 yr-old struggles with it. My challenge is learning the tools to assist him through. I choose to embrace it and learn what is necessary to assist him through the tough times. The worst is the washing of his hair. I still have not learned a way to do so that does not creat blood curdling screams. I have heard the process of requesting testing is long and a bit of a fight and I have learned that now that he’s three I can request such help. What I seek is the community that I can reach out to for assistance, compassion and support. I’m a single mama and love my little one dearly and it’s hurts to see him struggle with such things. So thanks for sharing this article, it has been very helpful! Tara <3
I have found the SPD label most helpful when talking to others about my son’s needs. Before I had a name for what he was experiencing I found myself saying to other parents “He’s just kind of a weird kid” or “He’s just got a lot of these…. quirks.” And I always felt guilty saying those things about my him. Being able to name the issue has helped me educate the adults in my son’s life. We haven’t said anything to my son about having SPD (he’s only 4) and he’s come so far in the last 2 years that I’m not sure we’ll need to. A label is only helpful as long as it’s… well helpful.
Krissy @ B-Inspired Mama says
Yes – I’ve found that to be very helpful, too. Ignorance is NOT bliss when it comes to out kids and their needs. It’s important that we educate those adults around them.
I had a child diagnosed with SPD when she was 2. She fit all the typical SPD symptoms, total meltdowns from touching, combing, bathing, mostly non-verbal, pre-emptively aggressive, crashing, banging, irrational fears of everything, etc etc. She almost never smiled. She was always hurting or afraid of hurting.
I was at my wit’s end with her fits, and screaming. The diagnosis helped me to look for ways to help her, instead of just assuming she was being difficult for no reason. It lead me to the GAPS diet, which in turn CURED my daughter’s sensory issues.
She’s almost 7 now, she has blossomed into a normal child. Sometimes she is more easily frustrated than other children, but it’s so mild no one would give her a diagnosis from it, it’s now a personality quirk.
As for treatments for SPD, I think they are a waste of time (I know many of you will disagree I don’t mean to hurt anyone’s feelings). Occupational Therapy doesn’t FIX the issue, it only helps a child tolerate that which is intolerable. We tried those things, but I wanted to see her cured. The fact that she had belly aches all the time made me willing to try changing her diet. The results that happened afterwards shocked my OP, she is now a supporter of the GAPS diet, and recommends it to the parents of the children in her practice. GAPS was a difficult road, but it worked completely, and now we won’t have to do all the trampoline jumping, and the dry brushing and the fidget-tools… we can just play!
My daughter has returned to eating normal foods, and she can go to a birthday party and PARTY, without drawing all the attention to herself. I feel like I had my daughter returned to me, her symptoms were so severe that I hardly knew her true personality, it was always being covered up with her sensory issues. Now she smiles and laughs and plays with delight. She’s very intelligent and has giftings in drawing, things I never would have seen before because she couldn’t sit still long enough to hold a pencil, and she couldn’t process what she was seeing because her body was so overwhelmed.
If you want to learn more about the GAPS diet, try this website, and buy the book: http://www.gapsdiet.com (I do not get anything for recommending this, I just found it so helpful I always do!)
Krissy @ B-Inspired Mama says
Wow – thanks for offering your experience with the GAPS diet. I have heard of it, but haven’t taken the plunge to try it yet with my little guys.
Full Spectrum Mama says
aaagh. we hear so many positive things about the GAPS diet but are 100% ethically and personally committed to vegetarianism. any ideas, Mrs>? (we have tried gf/cf with ZERO results…)
Unfortunately, and I hate to say this to you, trust me I’m not trying to be mean. But a Vegan/Vegetarian diet is very harmful to the gut of children with this disorder. You cannot have enough proteins, and healthy fats, and gelatins if you cannot eat meats.
Furthermore, grains of all kinds are harder for the gut to process than well boiled meat and fats. Vegetables are full of fiber, which also tears up the insides of the intestinal wall. In a normal gut, you have enough mucosal lining to handle roughage, but in a gut with disbiosis (leaky gut), the mucosal lining is depleted, therefore all of the vegetables and grains are actually HARMING his intestinal wall, because it isn’t protected. In the beginning of the GAPS diet, all meats and vegetables (and the veggies are limited to certain kinds) are boiled, so that they are as easy as possible to digest, and will SOOTHE and COAT the intestines, reducing inflammation, and starting the process of sealing the lining and building up the mucus.
I would strongly encourage you to read the Gut and Psychology book, to find out more about these gut issues, so that you can have a more informed idea about the GAPS diet and how it works. Unfortunately there is no way that you could experience healing from the GAPS diet or, (in my researched lay-person opinion) ANY diet, without giving him meat, and animal fats in large quantity.
Only you and your husband can decide if the ethical issues you have about eating meat are something you are willing to overlook in order to cure your son.
I’m sorry to put the ball back in your court there, and not be able to offer any other possibilities… I have looked into other things, and many kids grow up ok and learn to cope with these issues… my daughter was not going to be one of them, if anything I think she could have slipped even further down the Autism Spectrum into full blown autism. Before we tried the diet she was getting worse month by month, instead of better. I am thankful that I put in the two full years of hard work, and now have a completely normal child, and she can even eat whatever she likes now. (Though we still stay away from eating a Standard American Diet.)
I hope you will read the book. God bless.
Full Spectrum Mama says
Thank you so much for your thoughtful response. I HAVE read the book, and I see the logic – and I write as someone on the spectrum myself with both IBS and rheumatoid arthritis (helloooo inflammation). But I have had the talk with my son, who is 12, and he would rather “stay as he is” than eat meat. He’s a Wonderful guy, who happens to be on the spectrum and have a “tricky” stomach. None of us judge anyone else for their dietary choices but vegetarianism has been and is his and I have to respect that. As a mother you must know I’d do anything for my kids’ health…Guess I was hoping you might have a different answer – but I appreciate it anyway. I know incorporating parts may not help but surely staying away from Standard American will help anyone 😉 Thanks and love,
Full Spectrum Mama,
Oh, your son is much much older than my daughter was. At 12 you are right, you have to let him have a say in it. If he isn’t willing to eat meat, then he isn’t willing. Also, as a bit of relief to you, at 12, the diet is often less effective. The damage often proves too great to fully overcome, the older a child gets. Of course you also have the difficulty of getting them to change lifelong habits, which in a 12 year old is much more ingrained than in a 2 or 3 or even 8 year old.
It is good to be a person with convictions. And you have obviously done a great job teaching your child to value life. Good for you!
(BTW, IBS would be cured with GAPS too.) If you don’t want to go that route, you might consider reading this book: The Mood Cure by Julia Ross. She also supports eating meat as a dietary need, but you may find that the supplements in her book are acceptable to you, and they may help you with the sensory issues to a certain degree. (Guess they might help your son too in that case!) If you do the whole diet, and the supplements, its a cure for mental distress, fatigue, anxiety, sensory overload. But if you don’t work the whole program, you might still find positive results with the supplements. I know I did even though I can’t maintain the diet all the time (but I eat meat too).
Hope this might help you some.
Tara Moore says
Thank you! I’m going to try this out…. I’m glad to hear this worked for her. I fear it may be hard as my son won’t eat anything and I think this too is part if his sensory issues…ugh! Thank you for sharing and I’m off to explore this as an option.
Here is what we did. I BACKED into the program, by removing wheat, sugar and processed foods at first and slowly (took about 3 months), then I backed into the Intro, and THEN we came through the Intro in order. Also, reward him, do anything you can do to get him to eat it… you can take all the crutches away shortly. You will find, that as he is kept from the things that are hurting him, and given the things that are helpful, he will start to feel better and then will WANT to eat these things. She began to love the foods, and she was, for a while, concerned about eating other things, she would always ask me if she could eat it, because she discovered that she felt so much worse when she cheated (usually accidentally). We helped that along a bit, by reminding her of how she felt when she was eating those things, we did that because it is impossible to guard her from everything, we wanted her to be on board of her own will so that she would choose the right things. (She was between 3 and 5yo btw and she still GOT IT.)
Please read the book before you begin. This diet is not simple, it is very complicated. Far more difficult than simply cutting out grains and sugars. You need to have a thorough understanding of it, so that you see results. Also, if your child has amalgam fillings you should not start this diet until they have been properly removed. (the diet starts a strong detox effect, that will pull the mercury from the teeth into the blood stream causing further trouble.) It might even be prudent to find a GAPS nutritionist, because the diet often reveals other things that are going wrong in the body, and it can be hard to sort out all of the symptoms. We were lucky and blessed to make it through without many hang ups for my daughter, but it DID utterly devastate my health, as I had amalgams myself and didn’t think anything of it, but they poisoned me even more because the detox pulled the mercury right out of my teeth and into my blood stream.
This diet is powerful, so use wisdom and do research yourself. Find a good naturopath, or MD who will help you.
Full Spectrum Mama says
As a fellow educated mama it is SO clear me that SPD is a neurological difference much in the way of autism, though obviously different. My son was originally diagnosed with SPD and now also ASD (as i have been). Knowing these labels has given us both incredible tools and I agree with everything on your list. AND I agree that neither label defines us. Great post – thanks!
I’m the opposite. I rather not be told I have/had a disorder. And what’s normal these days? I also believe people are over diagnosed and medicated. It’s a fad these days. I had challenges growing up and I was never diagnosed with anything. And thank goodness! I’m perfectly fine! And now I have a son; people are pushing me to do the same! And it’s 10x worse for labeling then it was in the 70’s and 80’s. I wouldn’t avoid bday parties, bc you can’t run away from things their entire life. There are noises everywhere! School, highways, people, planes, parties… It’s life.
You’re right, it’s life. Now imagine experiencing it at FULL VOLUME with someone/thing touching you constantly that you can’t ignore (like your clothing), and anxiety, and the inability to relax EVER, because when you lay in your bed at night, you can’t stop feeling the blankets on your body, and you can’t stop hearing the faucet drip in the next room over (which isn’t a dull monotonous sound to you, but a loud crashing), and you can’t tune out the slight blink of the street lamp shining through your window, which seems like a search light being shined in.
Imagine if all of your senses won’t stop screaming at you all the time. It’s terrible. But there is a cure. Knowing what is wrong only helps people find a cure… why would we tell children that they just have to learn to cope with this constantly overwhelming world, when they can be free, and don’t have to feel that way? Why, When they can have nervous systems that shut off the feeling of your socks on your legs after you put them on for a minute or two, that tunes out the monotonous dripping, or the background noise at a restaurant, that allows you to focus on what is right before you because you aren’t drowning in a sea of noise, or lights, or touches.
If you had troubles like this as a child, and you learned to cope, I am so happy for you, you must feel so much better. If you are still struggling with these issues, it can be lessened even in adulthood. But if you had other struggles, I think you must not really understand what it is like for these children. (I didn’t used to believe in this stuff, till I had one of my own. I have 6 kids, I’ve got a good idea of what is a “normal range” of childhood behavior. I also have a degree in Psychology, which actually made me think that SPD was ridiculous and not possible, until it happened to us.)
Full Spectrum Mama says
Merri Lewis says
I completely agree that SPD is real. It is hyper real at our house–two out of four have autism. Both boys with autism have opposite sensory issues!!! It is profoundly obvious that such a thing exists. I believe it is very beneficial to have it an official “thing”, because it then lets us parents find each other! And, later the kids can find others with SPD and build community. It also is helpful for learning more about what helps, what doesn’t, and it helps explain the issues we run across to family and friends who don’t quite “get” it. People want to understand, and I think the label, in this case, will help on both sides.
I completely agree that it helps people to take us seriously. He just seems so normal at first. I HATE the word “disorder” though and rarely use it in his earshot. He just calls it, “sensory stuff”. He’s three, and he’s great!
Krissy @ B-Inspired Mama says
I do agree with the discomfort with the word “disorder” and usually try to just say “sensory issues” or “challenges” to my son. He will sometimes tell people he’s a “Sensory Kid,” too!
Melinda Stephens says
I think of the label as a tool. I use it when I need to, and it sits in a drawer the rest of the time.