What's in a Name? Part 4 - Is Keeping a Wrong Label OK?

By:  Julie Beem

Many of the parents who contact ATN have children with multiple diagnoses and we're frequently puzzled about which ones are the "right" ones.  I'm included in that group.  My child has an alphabet soup of diagnoses, including autism spectrum and ADHD/OCD/Tourettes (aggravated by her trauma.)  Fortunately for us, we had professionals who also recognized the RAD, PTSD, DTD components and pointed us in the right directions for treatment of those.  Yet, her developmental and processing struggles continue.

Getting a completely accurate diagnosis in today's climate (where trauma-based disorders are underdiagnosed) is very difficult.  So when I put on my "Mom" hat I will tell you that advocacy toward the most accurate diagnosis only takes you so far.   Advocating for and pushing professionals to diagnose our children accurately with RAD, PTSD, Developmental Trauma (or the new diagnosis in the DSM: Disinhibited Social Engagement Disorder) can be exhausting, and maybe not that beneficial.   If all my child had ever been diagnosed with was Developmental Trauma Disorder (the diagnosis I believe to be the most accurate), I would have been up a treatment creek without a proverbial paddle.  Who in my city would have known how to treat her?  What therapies and parenting strategies would have been recommended to us?  And would the school have even bothered giving her an IEP for something they've never heard of?

So, Mom to Mom, I will say that I have come to embrace other diagnoses that can help get my daughter the help she needs.  Autism spectrum has been a huge one for us.  My daughter has developmental and processing issues that are usually associated with Autism.  Yet, every evaluation she's ever been given yields the results of "borderline" on the autism scales.  But those evaluations have led to an Autism eligibility on her IEP and to speech, social skills, and OT (sensory-based) services through our school district.  Could I have pushed for these services without that Autism label?  Yes.  Would it have been harder?  Infinitely!

My point is this:  diagnoses are important for getting services and making decisions on treatment.  If you recognize that your child's school district, doctors or other service providers will provide what your child needs with a diagnosis that may not be 100% accurate, then maybe it's not such a bad thing to let that one stand.

When I put on my Executive Director hat, what I said above makes me cringe.  I long for the day that RAD, PTSD and Developmental Trauma will be widely recognized disorders, and those diagnoses will bring with them the needed services and interventions to put our children quickly on the path to healing.  And that day will come...as our movement builds and our collective voice gets stronger.  But in the meantime, innovative Moms will do what it takes to get their precious children what they need!