ACT NOW - Your comments are needed for inclusion of SPD in DSM-5!

The SPD Foundation just heard that one DSM-5 committee voted “No,” meaning that SPD should not be included in the DSM-5 as a “Novel Diagnosis in need of further research.”

One more committee will review the application before the “NO” is final. 

Your voice is needed NOW to say that SPD does exist and that many are suffering. Research on SPD already exists, more than enough for inclusion as “a new category that needs additional research”!

Act NOW!  The final deadline to show informed support for the inclusion of SPD in the revised Diagnostic and Statistical Manual (DSM-5) is June 15, 2012.

YOU CAN:

  1. Register on the APA’s DSM-5 website.
  2. Draft your comments in a separate document. Copy and paste into the comment box.
  3. Type the words Sensory Processing Disorder at the top of your comment.
  4. Start your comments by establishing your credibility – for example:
    • "I am the parent of a child with Sensory Processing Disorder."
    • "I am a scientist who has researched SPD at/for (supply details.)"
    • "I am a professional who has assessed/treated Sensory Processing Disorder for (x) years."
    • "I am a teacher of X years who has children with Sensory Processing Disorder in the classroom."
  5. Keep your comments short and related to why Sensory Processing Disorder has enough credibility to go into the DSM-5 as a novel diagnosis in need of more research!

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DSM-5 – Commenting on diagnostic recognition of SPD

Step-by-step instructions on how to comment

Click on the group that fits you best to find sample language and topics you might address.

INTERNATIONAL SUPPORTERS: Co-recognition of Sensory Processing Disorder in the International Statistical Classification of Diseases and Related Health Problems (ICD) published by the World Health Organization is expected if the condition is included in DSM-5. Please participate in our comment campaign by telling the APA how diagnostic recognition in both manuals would affect you or your child, your family, your clinical practice, or others in your own country.

 


 

Sample comments for parents to consider using

Feel free to use these sample comments or create your own.

  • Use your child's first name (or a factitious first name) to make the letter more personal.
  • Our family spent (#) years visiting doctors and (list others if you have room) others to find an explanation ...
  • Our family spent (#) years visiting doctors and others to find an explanation for our child's behavior. Until he/she was diagnosed with Sensory Processing Disorder, nothing ever fit, and treatments were ineffective.
  • Until my child was treated for SPD with occupational therapy, he/she was unable to (fill in the blanks). Now (describe the difference).
  • Our child's sensory issues totally determine how our family lives (give examples).
  • My child's sensory challenges caused significant school problems including (describe).
  • Once we could tell our parents why our child acted as he/she did at family gatherings, (describe what happened).
  • Our daughter was fed through a gastrointestinal tube for several years until her SPD was identified and treated.
  • Our son was expelled from multiple preschools before we learned that his aggressive physical behaviors were sensory in nature and could be changed.
  • My child's/our family's lives would have been different if SPD had been in the DSM. (Identify the differences.)

IMPORTANT NOTE: Please AVOID mentioning DSM recognition as an avenue for insurance benefits. The APA is interested in family experiences, not in payment issues.

Parents and other family members of children with SPD

Please ask your child's pediatrician/health care provider to comment on the APA site as a personal favor to you. Cutting and pasting the instructions for registering and commenting will make it easier for people to fulfill your request.

Comment on any of the following topics or come up with your own. Just don't try to comment on all of them!

  • Your child's symptoms
  • Your child's functional problems. This might include problems with dressing, eating, toileting, sleeping, playing with others, transitioning, going out in the community, school issues, sibling issues, family issues (e.g., walking on eggshells, feeling like you are in jail because you can't go anywhere).
  • Your child's social-emotional issues such as anxiety, depression, aggression, negative behaviors, controlling behaviors, temper tantrums, impulsivity, poor sustained attention, school rejection, social isolation, etc.
  • The difference it made when your extended family finally "knew" what was causing your child's behaviors
  • The effect of your child's condition on the opportunity to participate in a full range of childhood activities, e.g., Scouting, birthday parties, play groups, etc.
  • Specific therapy that helped your child and in what way
  • Social impacts of your child's condition including how extended family and others, including peers and teachers, perceive/treat your child
  • Your own feelings (e.g., loneliness, isolation) before you found out what your child had
  • Your own feelings (e.g., relief, hopefulness) once you had an explanation for your child's condition and knew it could be treated
  • The impact on your family, schools, and others once you reframed your child's behavior as being physiological in source, not behavioral or the result of your parenting style
  • Ways a recognized diagnosis of your child's disorder would improve his/her educational conditions or opportunities
  • Your family's assessment/diagnosis story. If assessment was long or complicated, include how many professionals you saw before an accurate diagnosis was made, how long it took, any misdiagnoses along the way, etc.
  • The effect of your child on other children and/or family members

Step-by-step instructions on how to comment

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Sample comments for adults and adolescents to consider using

Feel free to use these sample comments or create your own. It is not necessary to address every topic! Just address the ones on which you can make the most concrete and compelling remarks.

  • I am an adolescent/adult with Sensory Processing Disorder.
  • I was never diagnosed with SPD as a child even though I had symptoms of SPD.
  • My family spent (#) of years trying to find out what made me "different" as a child and the result was (describe the results).
  • Because I was never diagnosed, I experienced (list the kinds of problems you encountered or still encounter including school/work, family, social, emotional, etc.).
  • I was diagnosed and treated for SPD at (age). As a result of this (describe how your life changed/improved).
  • My life would have been different if SPD had been in the Diagnostic and Statistical Manual when I was a child because (describe what you believe would have changed).

IMPORTANT NOTE: Please AVOID mentioning DSM recognition as an avenue for insurance benefits. The APA is interested in family experiences, not in payment issues.

Adults and adolescents with SPD

You are in a unique position to comment on how undiagnosed or misdiagnosed Sensory Processing Disorder affects people long after childhood. Following are some of the topics you might address. To keep your comments concise, please don't try to comment on all of them!

  • Your symptoms and/or diagnosis
  • The functional problems that result have resulted from your SPD both as a child and now. These might include challenges such as social participation, academic performance, self-regulation, self-esteem, self-care, and transitioning.
  • The social-emotional issues your SPD may have caused or exacerbated including anxiety, depression, substance abuse, social isolation, school rejection or others.
  • Any limitations your SPD created for your participation in a full range of childhood activities such as sports, Scouting, play groups, or others
  • The family issues your SPD has caused including to your primary family as a child or adolescent and family members in your life as an adult.
  • Any difficulties you or your family encountered in getting an accurate assessment and diagnosis of your sensory symptoms.
  • Any specific therapy you received that helped and how it helped
  • Ways a recognized diagnosis would have improved your life as a child or would improve it now

Step-by-step instructions on how to comment

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Sample comments for physicians to consider using

Feel free to use these sample comments or create your own.

  • I believe that a diagnosis of SPD would be useful in my practice because . . .
  • I have treated children diagnosed with ADHD who have not responded to medication. When referred to occupational therapy for intervention, the child's symptoms are reduced significantly. I believe this disorder is Sensory Processing Disorder.
  • SPD does not have good diagnostic standards with which to screen and/or diagnose the disorder. Nevertheless, I do see children for whom SPD is the primary diagnosis. Diagnostic criteria in the DSM-5 would be extremely helpful in assessing these children and referring them to treatment.
  • I have found that a high percentage of the extreme premature infants I treat have sensory processing difficulties.
  • Until the DSM recognizes SPD, many children with ADHD or (fill in other conditions you see) will be misdiagnosed and receive inappropriate treatment.

Physicians are encouraged to comment on topics such as:

  • Sensory symptoms you see in your practice that are not explained by other disorders or conditions.
  • The usability of recognition diagnosis of Sensory Processing Disorder for your practice. Include whether you would use SPD as a primary diagnostic code if it was available to you.
  • The adequacy of current DSM codes for children with sensory issues who have no co-morbid diagnoses.
  • Quality-of-life problems you see in children with SPD such as academic, social, self-esteem, anxiety or depression or other emotional issues.
  • Any research you have read about and considered as you have learned about SPD.
  • Additional details you might cite about the children you have seen:
    • Primary signs and symptoms you have observed
    • Age range/gender distribution of children with SPD you have seen
    • Observations about possible genetic/inheritance possibilities based on clients you have seen
    • Suspect etiologies
    • Developmental course observed over time in children with SPD
    • Treatment outcomes you have observed by type

We encourage physicians to focus on the usability of an SPD diagnosis if it were to become available.

  • The general usability of an SPD diagnosis if it were to become available
  • The usefulness of a diagnoses to explain the child's symptoms and behaviors to families, schools, or others
  • How SPD is different from other conditions

Be sure to cite your professional credentials at the beginning of your comment.

Step-by-step instructions on how to comment

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Sample comments for diagnosticians to consider using

Feel free to use these sample comments or create your own.

  • I am trained/experienced in differential diagnosis for children with sensory challenges. My experience repeatedly has confirmed what multiple studies show: Sensory Processing Disorder is a distinct condition which has symptoms and treatment that are distinct from any other developmental disorder.
  • I have treated children diagnosed with ADHD who have not responded to medication. When treated instead for Sensory Processing Disorder, the child's ADHD-like behaviors resolved/reduced significantly. Until the DSM includes SPD, many children with SPD only or comorbid ADHD and SPD will continue to be misdiagnosed and be medicated when perhaps therapy might be more beneficial. This seems especially true for children with anxiety and sensory issues.
  • I have treated children diagnosed on the autism spectrum and found that so many children have "autistic-like" symptoms and yet truly the underlying problem is a severe sensory processing issue. For this subset of children, the autistic-like symptoms may resolve when addressed by appropriate therapies. Until the DSM recognizes SPD, many children will continue to be misdiagnosed as autistic and receive inappropriate, ineffective treatment.
  • Many clients tell me they have accepted a diagnosis that is inappropriate for their child because the misdiagnosis makes it possible for them to get services when "Sensory Processing Disorder" does not because it is not in the DSM. While this may provide immediate relief for some families, it is not an adequate or ethical way to provide intervention for children with disabilities. Only when SPD, which affects enormous numbers of children, is recognized will this practice stop.
  • I treat adults with Sensory Processing Disorder. Many of these adults have severe emotional, social, professional, and other secondary disabilities because they grew to adulthood without SPD being diagnosed or treated. Until SPD is recognized, and there are standardized diagnostic and intervention protocols, countless children will grow up to be adults whose lives are impaired by a disability that could have been remediated years before.
  • I effectively treat children with Sensory Processing Disorder using evidence-based standards that produce reliable results. Few children today receive such treatment because their physicians, school systems, and other "early warning" systems do not have diagnostic standards with which to screen, identify, and refer them to services. Diagnostic recognition in DSM-5 would close the "knowledge gap" that causes so much unnecessary suffering by providing standards for identifying these children.

Psychologists, neuropsychologists and other diagnosticians are encouraged to comment on topics such as:

  • The diagnostic differences you have observed between:
    • SPD and ADHD or
    • SPD and Autism or
    • SPD and anxiety disorders
  • How you currently screen for sensory issues in your practice
  • Any clinical data you have about the disorder, e.g.,
    • How many kids with SPD you have identified
    • How many kids with other disorders you have seen or typically see in a year who may have co-morbid SPD
    • How often you see kids who have been misdiagnosed with other conditions when in fact you feel they have sensory issues
    • How many kids you see who are diagnosed accurately with other conditions but who have sensory issues that have been missed
    • Any pre/post treatment impressions you have and what type of treatment you observed has been effective
  • Impacts you observe on parents/families once they understand that the disorder is physiological/behavioral not parental
  • The importance of a correct diagnosis of SPD to overall family functioning and well-being, including upon typically developing siblings

Be sure to cite your professional credentials at the beginning of your comment.

Step-by-step instructions on how to comment


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Sample comments for OTs to consider using

Feel free to use these examples or create your own.

  • I am trained/experienced in differential diagnosis for children with sensory challenges. My experience repeatedly has confirmed what multiple studies show: Sensory Processing Disorder is a distinct condition whose symptoms and treatment are distinct from any other developmental disorder.
  • I have treated children diagnosed with ADHD who have not responded to medication. When treated instead for Sensory Processing Disorder, the child's ADHD-like behaviors resolved/reduced significantly. Until the DSM includes SPD, many children with only SPD or co-morbid ADHD and SPD will continue to be misdiagnosed and be medicated when perhaps therapy might be more beneficial. This seems especially true for children with anxiety and sensory issues.
  • I have treated children diagnosed on the autism spectrum and found that many children have "autistic-like" symptoms when the underlying problem is a severe sensory processing issue. For this subset of children, the autistic-like symptoms may resolve when addressed by appropriate therapies. Until the DSM recognizes SPD, many children will continue to be misdiagnosed as autistic and receive inappropriate, ineffective treatment.
  • Many clients tell me they have accepted a diagnosis that is inappropriate for their child because the misdiagnosis makes it possible for them to get services they cannot get for "Sensory Processing Disorder" because it is not in the DSM. While this may provide immediate relief for some families, it is not an adequate or ethical way to provide intervention for children with disabilities. Only when SPD, which affects enormous numbers of children, is recognized will this practice stop.
  • I treat adults with Sensory Processing Disorder. Many of these adults have severe emotional, social, professional, and other secondary disabilities because they grew to adulthood without SPD being diagnosed or treated. Until SPD is recognized and there are standardized diagnostic and intervention protocols for it, countless children will grow up to be adults whose lives are impaired by a disability that could have been remediated years before.
  • I effectively treat children with Sensory Processing Disorder using evidence-based standards that produce reliable results. Few children today receive such treatment because their physicians, school systems, and other "early warning" systems do not have diagnostic standards with which to screen, identify, and refer them to services. Diagnostic recognition in DSM-5 would close the "knowledge gap" that causes so much unnecessary suffering by providing standards for identifying these children.
Occupational therapists and others who treat SPD are encouraged to:
  • Ask every parent whose children you treat or have treated to comment on the DSM-5 website (see above for parents).
  • Ask every physician or psychologist you know to post a comment on the DSM website (see suggestions for physicians above).
  • Comment in ways such as the following:
    • Identify any advanced training you have received in assessing/treating sensory issues, especially a mentorship or advanced training in OT-SI.
    • Describe your professional experience including how long you have assessed/treated SPD and approximately what percentage of your clients present with it.
    • Discuss outcomes of treatment if you have been tracking them (any pre/post data that you have even if not a controlled trial).
    • Describe the functional symptoms* of the disorder and functional changes from treatment.
    • Discuss the impact of SPD on the child at home, at school, and in community activities; either impacts you have measured or that parents have described to you.
    • Write a short vignette - a personal success story illustrating the impact of appropriate treatment for children with SPD. If possible, include, reference, or encourage the parents of the child to tell the same story from their point of view.

Functional impairments must occur for a condition to be considered a disorder in the DSM-5. Occupational therapists are in a perfect position to talk about functional problems such as social participation, self-regulation, self-esteem, and specific functional daily routines such as dressing, grooming, toileting, getting ready for school, getting ready for bedtime, sleep, eating, and transitions between activities or places

Be sure to cite your professional credentials at the beginning of your comment.

Step-by-step instructions on how to comment


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Sample comments for teachers and others in the schools to consider using

Feel free to use these sample comments or create your own. It is not necessary to address every topic! Just address the ones on which you can make the most concrete remarks.

  • I have been a teacher/school OT/other for (x) years.
  • In my classroom/school, there are a few/some/many students who appear to have sensory problems that get in the way of their school performance or otherwise affect their school experience.
  • Sensory challenges I have observed include (give specific examples).
  • Children with these sensory challenges often experience difficulties in the classroom or with peers. These include (give specific examples).
  • My classroom is affected by the children with Sensory Processing Disorder because (name specific impacts).
  • My ability to provide OT services to children with Sensory Processing Disorder is limited because the condition is not in the DSM (if applicable).
  • The students I have known who received appropriate treatment for SPD showed improvement in (name specific changes).
  • Inclusion of Sensory Processing Disorder in the DSM would improve the school experience of children in my classroom/school because (name specific possible impacts).

IMPORTANT NOTE: Please AVOID mentioning DSM recognition as an avenue for insurance benefits. The APA is interested in family experiences, not in payment issues.

Teachers, school OTs, and other educators

You are in a unique position to comment on how Sensory Processing Disorder affects children in school settings. Following are some of the topics you might address. If you are a school OT, please also see the suggestions for occupational therapists.

  • Whether you see children with sensory symptoms in your school setting.
  • How these symptoms affect academic development.
  • Functional problems you see at school that appear to be associated with sensory challenges including handwriting and other fine-motor activities, sports and other large-motor activities, social participation, and the ability to behave appropriately for the situation.
  • Social-emotional problems you see in children with sensory issues including social interactions, anxiety, meltdowns, impulsivity, attentional issues, etc.
  • How children with sensory challenges affect other children in the setting and the overall class environment.
  • The access to services in your school district for children with Sensory Processing Disorder.
  • Changes you have seen in children who have received private intervention for their sensory issues.

Be sure to cite your professional credentials at the beginning of your comment.

Step-by-step instructions on how to comment


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Scientists and Researchers are encouraged to comment on topics such as:

  • Research findings of your own or your groups as they relate to the validity of the diagnosis, the neuropathology, etiology (genetic or familial), signs and symptoms, developmental trends, treatment effectiveness, or any aspect of the disorder you have studied.
  • The importance to you for placement of SPD in the DSM (e.g., how placement in DSM would impact your research opportunities in a positive manner)
  • Any other profound societal changes that you think could occur if the SPD was a valid diagnosis
  • Any SPD research you think is extremely important for the APA to know about

Be sure to mention your professional credentials at the beginning of your comment.

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Step-by-step instructions on how to comment

 


HOW TO COMMENT ON THE American Psychiatric Association SITE

You will have to register with the APA site in order to comment. To submit your comments to the APA, please follow these steps:

If you have not registered:

  • Register as a new user on APA's website
  • Complete the registration form and submit.
  • The APA will issue a temporary password in a confirmation email. Check your email at the email address you provided. (Check your junk mail if you don't see it)
  • Use the password sent to you to either access the Change Password page and submit your own password OR to continue.
  • Follow the steps below.

To comment once you are registered:

To return to the APA site at any time, log in at http://www.dsm5.org.

Please forward this page to colleagues, family members, teachers, and friends and ask them to submit a comment to the American Psychiatric Association supporting recognition of Sensory Processing Disorder in DSM-5. If you are the parent of a child with Sensory Processing Disorder, ask your physician, therapist, and others involved in your child's care to comment as well. We especially need comments from physicians, particularly child psychiatrists and researchers. If you have a website, blog or social networking page, those are great places to get the word out, too.

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