What’s In A Label

I recently had coffee with a friend.  Her high school aged son has received many diagnoses over the years.  The question of autism spectrum disorder (ASD) remains on the table.

She asked my thoughts on pursuing a formal ASD diagnosis.

For me diagnoses, or labels, serve three main purposes.  To help me better understand what makes my kids tick, to provide others with guidance, and to secure services.

Understanding my Child

ASD, general anxiety, Tourette’s syndrome, mood disorder, ADHD, oppositional defiance disorder, and the list goes on.  Over the years, these diagnoses have provided me a lens to make sense of my kid’s behaviors and how they experience the world.

I will never fully understand how anxiety has the power to hijack ones’ thoughts and actions; however, I appreciate that the response to anxiety is real and not defiance. 

Likewise, when the impulsivity is at an all time high and Ben is saying “moo moo mama mama” repetitively to the point where I want to scream and lock myself in the room, I know asking him to stop for the 100th time is pointless.

Labels or diagnoses have helped me better understand my kids and in return, I hope I am a better parent.

They are not an excuse for disrespect nor are they to be used to get out of the hard stuff.  

When Ben is showing signs of manic behavior, I am able to better separate the frustrating, abusive, and exhausting behaviors from the illness.

Informing Others

This goes without saying … diagnoses drive individualized education plans (IEPs), therapy, medication, accommodations, and so forth.

What I have learned over the years though, is that each professional will have a different take on which diagnosis drives the bus.  And if your child is like Ben, then he can present himself differently hour by hour.

So yes, the labels or diagnoses provide professionals with invaluable information about how best to support my boys.  Equally important, as Ben and Jack’s mom, I am the keeper of the labels.  It is my job to ensure folks see the whole child and do not put them into a box because of ASD or ADHD.

Securing resources

This is a BIG DEAL for us.  I learned early on that certain diagnoses either open or close doors.

There are state and federal benefits for families and individuals living with disabilities.  Securing these benefits is dependent on the diagnosis.

For example, in the state we live the developmental disabilities (DD) world is much better funded then the mental health side.  When applying for Medicaid or respite funds, I go through the DD agency and lead the conversations and paperwork with Ben’s ASD diagnosis.  A mood disorder or Tourette’s would not yield the same benefits.

Conversely, when speaking with our school district about Ben’s out-of-district placement, the mood disorder is front and center.  This is the most destructive and unpredictable aspect of his profile.  The associated behaviors that come with a mood disorder put Ben and others at risk of injury.  Ben is very aware of his challenges and limitations.  With awareness comes anxiety.  With anxiety comes self-deprecation and suicidal thoughts.  The mood disorder and anxiety create a vicious cycle.   

Regardless of the state you live in, do your homework.  Call agencies and ask questions.

Back to having coffee with my friend, when she asked my thoughts on an ASD diagnosis for her son my response was it depends.  It depends on what types of services you are looking for short-term and down the road.

I encouraged her to:

  • Call our local DD area agency and ask the question – with an ASD diagnosis what additional services are we eligible for as my son approaches 18 years of age
  • Reach out to EasterSeals, a great resource for parents EasterSeals Resources for Parents
  • Call a special needs financial planner to learn about federal benefits
  • Research online; a helpful resource is The Arc Link

Once she has a better understanding of the potential benefits associated with ASD, then she can decide on whether it is worth a formal diagnosis. 

To be honest, I am exhausted from researching programs, admitting the kids to psychiatric hospitals, and being a full-time advocate for my boys.  With Ben being a teenager and Jack a year behind, we recently hired a special needs financial planner and a special needs tax lawyer to be the experts on available benefits and help us plan for the future.  Both have been worth their weight in gold!

So my final two-cents … diagnoses or labels matter for lots of obvious reasons.  

There is an art and science to leveraging diagnoses.  The science is managing behaviors and developing treatment plans.  The art is securing services.  For our family, paying attention to how to leverage each diagnosis pending the goal has been invaluable.    

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