“What’s in a name? That which we call a rose

By any other name would smell as sweet.”

— William Shakespeare

What We Call “It” Matters

One of the more frustrating parts of parenting children who had a rough start in life has been the marked lack of professional help that has actually been able to help us. It seems like it should be an easy thing to find, right? Wrong. The unfortunate reality of our society is the vast majority of both medical and mental health professionals lack training and critical understanding of complex trauma-related disorders.

The most poignant evidence of this is that the “powers that be” still can’t even agree on what to call whatever “it” is that our kids suffer from…or if it even exists. If they don’t even know what to call it, how are they supposed to learn about or fully understand it…let alone treat it?

Here’s where the problem lies. All medical and mental health professionals use the standardized definitions and criteria outlined in DSM-5 to diagnose mental disorders in their patients. DSM-5 is an acronym for Diagnostics and Statistics Manual of Mental Disorders – volume 5 prepared and published by the American Psychological Association. Per their website, this handbook “contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system.”

Why is there so much confusion?

Unfortunately, even after all the advancements made in neuroscience and mental health in recent years, we are still lacking one name and one set of criteria that defines what is really going on with our kids. The impact of that is not insignificant. In most cases, it still takes at least 4-5 different diagnoses to accurately describe the full impact and range of symptoms presented by a child who struggles with complex issues.

Here’s the problem with that…

1) Diagnoses are subjective. They are based on what the practitioner can see combined with information they gather from parents and others along with the quality (and upkeep) of their own training. It is logical to expect our health care providers to be the experts and know about all the different disorders out there. Sadly, that isn’t always how reality works.

There are currently over 150 different conditions outlined in DSM-5. Each of them are complex in their own right. Many of them, including disorders related to children and trauma were redefined in 2013. Names were changed. Definitions were changed, and so were the diagnostic criteria associated with them. You’d think by now most practitioners would have caught up and adapted. Unfortunatley, that ins’t always the case, especially if trauma related issues aren’t their primary focus.

2)  Criteria for different conditions overlap. This is normal. However, the trauma-related disorders that do exist are still loosely defined and misunderstood by many providers. Sometimes the differences between these conditions and other more “main stream” ones such as autism, bipolar, ADHD, and other forms of mental illness that affect larger segments of the population may seem only slight…at least on paper anyway.  Those differences, however, can and do make all the difference between an accurate diagnosis and treatment and completely missing the mark.

It is also important to remember that practitioners are people too. They all have their pet specialties and areas of expertise. This is a good thing! Rather than being “jacks of all trades and masters of nothing”, most are masters of something and know how to find answers for many things. Unfortunately, far too few are experts in trauma.  Since so relatively little is generally covered at the college level about attachment and trauma related disorders, most providers are naturally more familiar with other issues. When lesser known conditions such as DSES, DMDD, or ND-PAE or don’t appear significant (or perhaps the practitioner doesn’t even know what these other conditions are), they tend to lean towards what they know…and in some cases significantly increase the chances of misdiagnosis.

3) I will outline the third problem using a term carried over from my college art classes. Gestalt: “The whole is more than the sum of the parts.”

As we look at this principle in terms of mental health conditions, we would say “the combined effect of all the different conditions looks very different than how each separate piece is defined.” For example, ADHD looks very different in a securely attached biological child who wasn’t prenatally exposed to alcohol than it does in a child born to an alcoholic mother who consumed alcohol during pregnancy and then subjected the child to abuse, neglect, and abandonment after they were born. The same is true for PTSD, mood disorders, anxiety, and many other conditions, including learning disabilities.

When only the individual pieces are considered, and especially if some of those pieces are misdiagnosed, the “big picture” becomes less clear…or may even miss the mark completely. It is extremely difficult to treat that which can’t be easily seen or defined. The #1 reason I have seen treatments fail for my own children and countless others like them across the country is because only one piece of the puzzle (such as ADHD or trauma) is being addressed without taking all the rest of what is going on into consideration.

Rad vs. Developmental Trauma

I want to take a close look today at two of the more common terms used in reference to children with extreme social, emotional, and behavior issues related to early childhood trauma:  RAD and Developmental Trauma. Even though the two terms are still often used interchangeably in the real world, they are indeed very different things. Understanding those differences may mean the difference between success and failure for our children and our families.

What is RAD?

Prior to the release of DSM-5 in May of 2013, RAD (Reactive Attachment Disorder) was based on the criteria that the child had experienced abusive, neglectful, or frequently changing caregivers during their first 5 year of life. It was defined as an “uncommon” disorder in which children react to extreme neglect and/or abuse with “Markedly disturbed and developmentally inappropriate social relatedness in most contexts, as evidenced by either of two behaviors:

1. Persistent failure to initiate or respond in a developmentally appropriate fashion to most social interactions, as manifest by excessively inhibited, hypervigilant, or highly ambivalent and contradictory responses…

2. Diffuse attachments as manifest by indiscriminate sociability with marked inability to exhibit appropriate selective attachments (e.g., excessive familiarity with relative strangers).

Sadly, both my kids met both of these criteria, even though they both presented with it very differently in real life. One is an internalizer and more like a pressure cooker that explodes when overloaded. The other is a short tempered, reactive externalizer who makes all his feelings known to the world right away. This definition, however, accounted for only a fraction of what both kids were actually dealing with, though. It didn’t account for the nightmares, constant deviant behaviors, defiance, rages, or myriad of other issues that have been part of our daily life over the years.

The term “Attachment Disorder” became a pop-culture umbrella term that included all the real symptoms children like ours were exhibiting. The term became a way of describing all the socially, emotionally, and developmentally inappropriate moods, behaviors, and relationship problems that were happening in connection with broken attachment.

Even though RAD was formally defined and recognized back in the 80’s, appropriate treatment methods didn’t come along for several decades. Early practitioners who recognized the real problems children with these issues were facing began using “Attachment Disorder” both as an unofficial diagnosis and/or interchangeably with the diagnosable condition of RAD. They also began attempting to treat it using “Attachment Therapy”. Most of the early treatment methods were unproven, unsubstantiated, and often unorthodox…and came into existence because nothing else was working. These early treatments involved practices such as holding therapy, rebirthing techniques, forcing children into “therapeutic” rages, and strict punishments for non-compliance. The ideas behind them may have been valid according to what was known about the conditions at the time, but the execution and understanding of what was really driving the conditions was very flawed.

As a result of those tragic cases, those old practices have gone by the wayside and are even illegal in many states, including mine. I am glad for that! I am also very thankful there are MUCH better treatment options available now that focus on building relationships and trust between parents and kids. Do be warned, however, if all someone knows about Attachment Disorder or RAD is the old school stuff from the high profile cases of years ago, you may well find yourself facing some pretty harsh critics if they find out your children have Attachment Disorder/RAD and are being treated for it. Those old stigmas never die.

Redefining RAD

The definition and diagnostic criteria for Reactive Attachment Disorder were changed with the release of DSM-5. RAD was reconfigured from one disorder with two subtypes as defined above into what now two separate and distinct disorders. Both still assume lacking attachment resulting from “extremes of insufficient care” during a child’s early years. These including social neglect/deprivation, repeated changes in caregivers, and rearing in unusual settings such as orphanages or foster care. Both also assume that symptoms of the disorder must persist for at least 12 months, symptoms must be present before age 5, and both conditions are only diagnosed in young children.

RAD (Reactive Attachment Disorder) is now defined as the emotionally withdrawn/inhibited type of the disorder characterized by emotionally withdrawn behavior and social/emotional disturbances that include reduced responsiveness, limited affect &/or markedly increased irritability, sadness or fearfulness.

That’s it. Nothing more. Nothing less.

DSES, or Disinhibited Social Engagement Disorder is now the official diagnosis for indiscriminate type of attachment disorder. It is characterized by reduced or absent reticence when interacting with unfamiliar adults, becoming overly familiar either verbally or physically with non-care-giving adults, and diminished interactions with or concern for their adult caregiver.

Again…that’s it. Nothing more. Nothing less.

Do I like the changes? No. I don’t like them at all. While these changes may have been helpful for some kids who prominently display one type of the disorder or another, so very many children (including both of my own) present with a combined type of the condition and symptoms continue to linger even after significant healing and attachment take place. This whole segment of children were left in limbo and far too many no longer meet the criteria for either condition as it is currently defined.  Obviously the powers that be who made the changes didn’t ask for my input before they made the changes. They are what they are, though.

What is Developmental Trauma?

Developmental Trauma, sometimes also referred to as complex trauma, is an umbrella term used to describe significant and repeated trauma that happens during the first three years of a child’d life. Trauma doesn’t just affect the physical body, though. In fact, those scars often heal much more quickly than the psychological and emotional ones do.

Exposure to early trauma leaves an invisible, but toxic pattern and combination of developmentally inappropriate moods, social behaviors, somatic symptoms, psychological issues, developmental gaps, cognitive delays, learning disabilities, and relationship problems in it’s wake. A child who repeatedly experiences and/or witnesses neglect, abuse of any kind, abandonment, domestic violence, substance exposure, broken or non-existent attachments to their primary caregiver, and/or other forms of trauma is at risk of developing significant  and lifelong social, emotional, cognitive, neurological, behavioral, relationship, and legal problems. 

Developmental Trauma hasn’t gone away, though. Even though it isn’t an official diagnoses, it is still a much better descriptor of the real problem than Attachment Disorder ever pretended to be. It also comes with much better (and continuing) research and documentation. Developmental Trauma also doesn’t carry the same barbaric stigma that too often still surrounds the pop-culture version of Attachment Disorder or RAD. From what I understand, efforts are also still being made for DTD to become officially recognized in the future. Effective treatment programs based on establishing trust and healing through relationships also continue to grow.

I have also found great success in sharing the documentation regarding it with our practitioners. You can find the long version of the initial DSM-5 proposal for DTD here and a great summary with a printer friendly option here. As the years go on, even better resources will surface. I highly recommend taking these and any other materials you deem suitable to your own providers and then counseling with them on how best to incorporate the information to insure your all your child’s needs and issues are being properly recognized and diagnosed based on what is officially available.

I also strongly encourage you to continue doing your own research and stay current on the latest happenings. Keep learning. Keep asking questions, and keep asking the professionals who serve you to do the same. New advances are being made all the time. New understandings of trauma and it’s effects on the brain also continue to surface. Eventually we will have unity and recognition…and hopefully, for all of us, it will come sooner rather than later. Our kids need it and deserve it.

References

Disinhibited Social Engagement Disorder. (Oct 18, 2016). Traumadissociation.com. Retrieved Oct 18, 2016 from http://traumadissociation.com/disinhibited. Read more: http://traumadissociation.com/disinhibited

Reactive Attachment Disorder. (Oct 18, 2016). Traumadissociation.com. Retrieved Oct 18, 2016 from http://traumadissociation.com/rad. Read more: http://traumadissociation.com/rad

http://www.dsm5.org/about/Pages/Default.aspx

http://www.theravive.com/therapedia/Reactive-Attachment-Disorder-DSM–5-313.89-(F94.1)

http://childmyths.blogspot.com/2016/02/five-ways-of-looking-at-attachment.html