Not-So-Obvious Spectrum Diagnosis; A Mother’s Concern

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Beth and I were approached by a parent this weekend with an excellent question, and a head-scratching situation.  She asked for our help, and agreed to let me share her story.  Author’s note: you can ask me a question without fear of publication 😉  Here’s a summary:

This mom has a son who has been diagnosed with ADHD with OCD tendencies, and has downplayed her gut feelings that there is something else going on.  The pediatric neurologist says that given her field of employment (education), she’s more sensitive to signs.  She was told recently that Asperger’s is no longer “really a thing.”  The clinician feels her son is emotionally healthy, and has an IEP team, so why push for a label?   The boy is taking medications that, according to him, “slow down my brain so my body can catch up.”  He has no appetite on the medications, and this mother was made to feel as though she was depriving her son if she refused the medications for him.  He is able to take “medication vacations” on weekends and over holidays, so she uses this time to “fatten him up.”

Her son has made gains academically since moving to a smaller district.  He does, however, display significant social awkwardness and has anxiety about schedules and procedures that go well beyond inherent personality traits.  An unexpected change in routine causes a day’s worth of necessary soothing, both self-soothing and with the help of trusted adults.  This behavior has lessened since their move to a quieter neighborhood and more laid back lifestyle, but still occurs at least monthly.  His friends are developing more mature interests, but he’s still naive and immature in his thinking and behavior.  He is quite content with playing alone for the afternoon.  He is also very sensitive to sights and smells.

The questions were:

How is Asperger’s NOT a thing?

Should I push for a label, or let it go?

What’s my next step?

Here’s what we came up with.  Let us know if you would have said something different.

Firstly, autism disorder, Asperger’s disorder, child disintegrative disorder, and pervasive developmental disorder – not otherwise specified, were the four diagnoses covered in the Diagnostic and Statistical Manual of Mental Disorders IV.  The new DSM-V has lumped them together in one category, Autism Spectrum Disorder.   So essentially, no, Asperger’s is no longer a thing on it’s own, but it’s now part of a bigger classification.  It didn’t go away, it just got renamed.

Secondly, a label is a tricky thing.  On the one hand, a label can be a handicap to your child.  It will indeed cause the world to see him differently, and in that, treat him differently.  One of my biggest fears for Jacob carrying the label of “autism” was that people would set the bar very low for him, and he’d never be expected to perform or progress.  We ran into this again when he was given the label/diagnosis of “intellectually impaired,” formerly mental retardation.  This was a heavy one for us.  It was even heavy for the examiner, who asked us if we were OK with being diagnosed!  I bet HIV and cancer patients would love the option … but I digress.

An important thing to remember is that regardless of the label or diagnosis, your child is your child.  Jacob is the same boy since his “intellectually impaired” label as he was before.  How we interact and treat him has not changed.  In the ever changing climate of healthcare and service availability for people with disabilities, as budgets are cut and clinicians are spread thin, those with the labels get the services.  It’s a harsh reality of modern healthcare.

Also, a label or diagnosis can open doors that may otherwise remain closed to those without.  This boy already has an IEP team, but treatment/management of a child with ADHD and a child with autism is different.  Sensory seeking children can behave in a similar way to children with ASD and ADHD.  Medications work with aspects of ADHD, but not necessarily with children who are sensory seeking.

Bottom line: go with your gut.  This mom tells us that deep down in her heart of hearts that there’s something amiss.  This tells me there probably is.

As for what to do next, we suggested seeking an evaluation by an occupational therapist.  Given that sensory seeking behaviors, hyper/hyposensitivity to sounds and smells, and the like are so commonly found in autism, but can exist outside of ASD, it’s important to have a professional person help make that determination.  There are a number of treatments and strategies that can be highly effective in kids with what is termed Sensory Processing Disorder (or sometimes Sensory Integration Dysfunction).  This SPD website pops up with a Google search as “It’s NOT autism, it’s SPD!”

Occupational therapists are experts in these sorts of behaviors, and treatment of them.  Not all OTs specialize in children with sensory needs.  Jake’s first OT was a God-send.  She worked miracles for and with him, and a huge piece of his success in later years can be directly attributed to her effort.  Perhaps this boy can experience the same success.

Having a good team of people who believe you (and in you) is essential to the success of any child.  Having help determine which one (or how many) diagnoses is an important place to start.

Here are some links for additional reading/information.

STAR Institute for Sensory Processing Disorder

American Occupational Therapy Association

DSM-5 Development

Autism Society of Maine


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