What’s in a Name? Part 2 – To Label or Not to Label

By: Julie Beem

“You don’t want her labeled for life.”  This sentence is usually spoken by your child’s grandparent (out of sheer concern for you and your family) or by a school official (who may be trying to block access to special education services).  Either way, crossing the threshold into “labeling” your child is a difficult thing for many.

Mother Worrying about DaughterBut the truth is that Reactive Attachment Disorder, Post-Traumatic Stress Disorder, Developmental Trauma Disorder are all Disorders.  They are all real, and in our world when something exists, it gets a label.  It is a noun…a thing.  I understand the difficulty, though.  Diagnoses (labels) are scary.  If your child had cancer, blindness or Down Syndrome, he/she would get a diagnosis and although it would be scary, you would then have a path to pursue help, a course of action.  Sadly, the course of action for treating RAD, PTSD and DTD is not yet as well defined as other paths.  But without calling these disorders what they are, there’s no impetus to create a path to treat them.

 

I recently heard a professional who works with children with attachment & trauma problems say during a workshop that “RAD is not real.”  Well… that got my attention.  The room full of adoptive parents just nodded.  Only one mom objected.  The professional’s point, I think, was the stigma that comes with labeling a child with RAD, which has become a very scary diagnosis to many, is so great that we should just avoid the diagnosis altogether.  My sarcastic response was “So you’re saying that the thing you’re spending your career treating doesn’t exist?”  But I kept my comments to myself and instead pondered, why would a professional take this stance?

Stigma.  And the shame and hopelessness that surrounds the label.  Admitting that your child has a disorder of attachment brought about by early trauma is a very difficult thing.  The symptoms can be subtle to the outside world.  And because it’s a relationship disorder, it can clearly look like you – the parents – are a huge part of the problem.  RAD and PTSD are in the DSM (Diagnostical and Statistical Manual), the book used to diagnosis Mental Illness.  And that’s a huge stigma.  Not to mention that the crafters of the DSM frequently change the labeling of the disorders there, adding to the confusion.

The professional went on to explain in the workshop that because RAD was considered incurable by many and because parents and professionals often viewed the child differently after he/she was labeled with this “hopeless” disorder, it was important that we stop labeling children with it.  But that’s backward logic.  For decades nearly all types of cancer were incurable.  If we hadn’t recognized and diagnosed cancer, we would never have had the impetus to treat it and to research the treatments for it.

There is little research being conducted on how to treat RAD or Developmental Trauma Disorder (or some call it, Complex Trauma).  They’re still working out all the labels <sigh>.  But there will be even less if we quit recognizing these exist and quit diagnosing them.  Recognizing the connection between early childhood trauma and a child’s inability to form healthy relationships has been a huge step forward.  But now it’s time to recognize that these disorders are real and are not necessarily rare.  And it’s time to figure out how best to treat them.

Julie has been ATN's Executive Director since 2009. She joined the organization in 2004 after finding incredible support from fellow ATNers when she was searching for answers about her own daughter's early childhood trauma and attachment disorders. Julie leads a staff of passionate professionals and acts as spokesperson for the organization. Prior to ATN, Julie was the president of a marketing and communications consultancy, The Epiphany Group, and has over two decades of experience in professional services marketing, strategic planning and communication strategies. As a graduate of Partners in Policymaking and through personal experience, Julie has garnered a great deal of experience in the areas of special education, school issues, and disabilities advocacy. A published author, Julie wrote a chapter in the EMK Press Adoption Parenting book and was the special needs blogger at Adoptionblogs.com for two years. She frequently presents workshops on attachment and trauma to local and national groups. Email Julie. Julie holds an MBA from Avila College in Kansas City and was a Certified Professional Services Marketer. Julie, and her husband Dave, are parents to four (bio, step and adoptive), including their youngest daughter, adopted from China. This daughter’s attachment difficulties and developmental trauma disorder have changed their lives significantly…in amazing ways.