[Urgent Update! The deadline to submit comments about Sensory Processing Disorder (SPD) for the DSM-V is Tuesday, April 20, 2010. If you haven't yet done so, please send your comments very soon! This is not only critically important for autistic children and adults but for all people who struggle with sensory challenges. Make this part of how you observe Autism Awareness Month. See below for the background information I posted last month on this issue and how you can submit your comments to the right place.]
I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.
In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.
Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.
If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.
The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.
Here are the links:
- Sensory Processing Disorder (SPD) Foundation – their home page
- DSM Central – Everything you need to know about SPD as it relates to the DSM-V
- Commenting on diagnostic recognition of SPD – A brilliant tutorial on how you should prepare your comments to be most effective and then how to submit them to the right place
- And don’t forget to sign the petition.
Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.
And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.
The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.
Posts that hopefully are similar:
- Sensory Processing Disorder and the DSM-V – Call to Action
- Is “Asperger’s” on the way out?
- Autism, Medical Expenses, and Tax Time in Our Family
- Action Alert x 2! The Stimulus Package and Funding for Disabilities Services
- The Clinical Definitions of Autism, Asperger’s, and PDD-NOS
- Help Military Families Get Autism-Related Therapies for Their Children
- Mental Health Gets Bailed Out Too! And Disability Rights Activists Get a Two-Fer!
{ 2 comments… read them below or add one }
My son has SPD. He has received state funded therapy from the ages 2-3. Once he turned 3 he was no longer eligible for OT. My insurance will not cover OT or speech for SPD, since it isn’t deemed a medical issue. My school system won’t provide OT in his Pre K class, because it doesn’t “keep him from learning”. He has speech delays, refined motor skill delays, overstimulation behaviors, thought processing delays, and WILL NOT EAT. He did not talk until he was 3. He still has a speech delay, though it has gotten better. I beg and plead for help. I want to see him eat and enjoy food. He turns away from the smells the textures. He will leave the table to cover his nose because of a food smell, if it is very loud. He will not eat anything other than french fries, “yellow crackers”, and “yellow chips”. He just turned 4 and has never had cheeseburgers, grilled cheese, meat, mashed potatos, candies, desserts, pizza, etc. It is not a control issue. Thank god for Pedia Drinks. I don’t know what we will do if he ever refuses to stop drinking nutritional drinks. This is the only way I can keep him at an ideal weight. He gags and throws up everything if it is not from his select list of foods. He frequently gags and throws up the foods he does like if it hits his throat a different way or his french fries are a consistency that doesn’t please him. When he gags, he gets scared and stats to choke or vomit. He says his food is going to choke him and that he is scared to eat it. He asks me “mommy why food choke me?” It breaks my heart. His severe problem with Oral Stimulation prohibits a healthy diet and creates constant constipation, which I have to correct with daily dosages of Miralax. He got impacted bowels once, due to not eating and the fear of it hurting to poop. He still tries to hold it, but thanks to Miralax, that is not as bad. I am so concerned about kindergarden, will he adapt, will he be accepted, will he eat? He has a hard time holding feeding utensils because he eats nothing that requires utensils. He is a very loving child but usually tends to work better alone or with adults. He LOVES kids but tends to run them off by being over friendly. He isn’t always sure how to interact with other children.
He sometimes violates their space even though he is trying to play and be friendly and if that doesn’t work, he will play outside the group. He will go to strangers and try to hold their hand at a local Wal-Mart, which terrifies me! He is more this way with adults than children.
I think he feels like he doesn’t fit in with the other children. His being over agressive runs them off. He repeats the same things over and over. Grits his teeth alot when hugging or loving on me or grand parents. Pats to hard sometimes when giving affection.
He has grown tolerate to, but always hated, vaccums, sirens, blow dryers, blenders, mixers, etc.
Finally at 40, I understand alot of the battles I had as a child. I always wondered what was wrong with me. Why I couldn’t fit in, why I hate malls due to noise, loud restaurants, work better alone, or in small groups, have a hard time making new friends or making small talk with newcomers. I have a hard time making relationships work and now am going thru a divorce. Now I see, that we both have SPD. Now I see that my younger brother had SPD. VERY similiar symptoms and childhood. He never could fit in at school, he had anger issues, speech issues as a child, learning delays, which led him to years of drug and alcohol abuse, which later on took his life,while drinking and driving. Drinking and Driving was his coping mechanism and way out. I understand that too, as a younger adult I was the same way. Now that I am a mom, I just deal with it. My son has educated me tremendously on a family history of behaviors I could never understand. I want to help my 4 four year old now, before he develops low self esteem or other social and emotional problems. Lastly, not to mention I see a genetic connnection here. My dad has alot of the same behaviors. I’ve never understood his outbursts of anger, and lack of affection, etc. You get the idea. Please help me, help my son, before he is another statistic. I don’t want a lifetime of depression for him like I have experienced. Early intervention was the best thing I could have ever done for him. He has been in speech therapy, Occupational Therapy, and been in a mom’s day out, or Pre K, due to me getting the state involved as soon as he turned 2. He has been evlauted numerous times by numerous specialists and behavorial doctors and they all say that he is not Autitistic, but won’t label him as SPD. Even if they did, my hands are tied. Now that he’s 4, ABSOLUTELY NO HELP. I’m a single mom and I can’t afford to pay out of pocket for therapy. Might I add, that even though he has all these delays, he is very intelligent.
He can say his ABC’s, puts puzzles together very quickly, can play and understand any game on the computer, and he loves books. He is very curious and eager to learn, but sometimes withdrawals in a classroom settnig because it takes him longer to do or grasp things. He might have to be prompted to pick up a crayon and color even though everyone in at his table is already doing so, like the teacher has asked. He is such a precious loving child. I just want to provide him all the tools and help he needs to function and prepare for a very fast paced world.
Deborah Selph,
The neurological disorder called the sensory processing disorder. In this condition children are confused and they can not understand exactly, what they wants to do. Because brain can not detect the messages properly. Occupational therapy is the best treatment for this disorder.
http://www.disorderscentral.com/sensory-processing-disorder.html