Myths and Facts About Pursuing a Diagnosis for Kids

Diagnosing children with autismI hear from many parents that they are afraid to have their child evaluated because they do not want them labeled or fear that diagnosis of autism and ADHD are given too freely. Fear is never a good reason to take action or avoid taking action. Both Science Kid and Word Boy have a diagnosis, and I remember the angst I felt in deciding whether to have Science Kid evaluated all those years ago in 2009. I thought I’d share some myths and facts.

MYTH: Getting a diagnosis is easy. Children are over-diagnosed.

FACT: The rising numbers in rates of autism is NOT due to over-diagnosis.

I had Word Boy evaluated by a developmental pediatrician in 2011 at the request of his pediatrician and Science Kid’s BCBA (Board Certified Behavioral Analyst who provided him with Applied Behavior Analysis therapy). That developmental pediatrician had Word Boy evaluated by 4 different professionals in different fields and observed several traits of autism, enough for a diagnosis of PDD-NOS.

The developmental pediatrician did NOT diagnose him with PDD-NOS (mild autism, the same diagnosis Science Kid has) but suggested more intensive interventions and to watch him. At that point, Word Boy had already had a year of early intervention but still had autistic like traits. The suggestion was to intervene more and watch and wait.

This year Word Boy was given a confirmed diagnosis of mild autism. His story is similar to many I have heard. By contrast, Science Kid’s early diagnosis remains an anomaly.


MYTH: Getting a diagnosis is labeling your child for life.

FACT: Children can be re-evaluated and lose a diagnosis if there is no evidence that it is accurate.

This is supported by recent research which shows that some children lose their diagnosis have intensive behavior therapy.
If your child gets a diagnosis, that is not the only fact about them as a person. Nobody can be boiled down to a label. I am an autism advocate to educate people what autism looks like in real children and dispel some of the myths that existed in the past. I don’t know of anyone who has looked at my two children and treated them as a label.

[box]Nobody can be boiled down to a label.[/box]

They are complex human beings with strengths and weaknesses and an accurate diagnosis enables them to reach their full potential. Science Kid is intense and weak in pragmatic conversational skills, but he loves people and making friends. Word Boy is my introvert that can charm anyone he meets but would much rather be at home alone.

MYTH: There is no benefit to getting a diagnosis.

FACT: In the military, there is a huge benefit. Enrolling in EFMP (the Exceptional Family Member Program) which theoretically ensures the service member will not get stationed anywhere without adequate services – which is a positive for some families. 

The theoretical part is worth its own article (let us at Next Gen know if you want more details about that.) For conditions like autism, the service member can enroll the dependent in ECHO (Extended Care Health Option) which provides $36,000 for ABA per year with a small monthly co-pay that is based on the rank of the service member.

In addition, a diagnosis from a professional can help argue for accommodations via IEP (Individualized Education Plan) or 504 plan.

MYTH: My child’s functioning varies day to day and I am afraid my concerns will be dismissed or the professionals will think I am crazy.

FACT: Every parent that is struggling with their child’s behavior and/or development fears this.

I have never found this to be the case. Even when the developmental pediatrician did not diagnose Word Boy, my concerns were heard, observed, and validated. If a family is really struggling with a child, there is usually a reason why.

Sometimes the first professional you see is not the right one. Sometimes you get one piece of the puzzle and have to see another professional to fill in the other pieces. If you are given an answer that does not sound right for your child, think about it critically and seek another opinion.

Hearing a label applied to your child is not easy. It is important to know that it does not change your child and it does not limit what your child can accomplish. It is one small piece of who they are and opens doors for how to help them.

What is your experience? Have you had a child diagnosed with a special need? Do you have concerns about a child and are worried about the evaluation process?




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