Should Families Always Pursue an Autism Spectrum Disorder Diagnosis?

As a pediatric occupational therapist, I used to encourage the families who asked, to pursue an autism spectrum disorder diagnosis because it opened up doors.  In the states that I have worked in, sometimes that meant an easier time getting an IEP.  More services from early intervention.  Automatic qualification into the district special education preschool.  Etc, etc.

“Get the diagnosis.  You can always losed it if it no longer fits”. Is what I used to say.

But now, I’m not so sure.  

The Issues with an Autism Spectrum Disorder (ASD) Diagnosis

My children are older now.  I am seeing issues as a child gets to college age. 

The military is not an option.

Even an ADHD diagnosis takes them out of certain career choices.

There is also a stigma in some cases. This is improving, but do all schools and employers see it this way?

Early Intervention

I still will encourage families to pursue an early intervention evaluation.  Especially if it will open up more treatment options.  Early treatment greatly improves outcomes.

Washington University Study

Early Intervention Outcomes for Toddlers With Autism Spectrum Disorder and Their Families

Part C Early Intervention should be available to all families if a child show delays. Regardless of if they have a diagnosis or not. Families can self-refer for these free services if a child is under the age of 3.

Take a look at his list to find yours.

Aggressive Pursuit of a Diagnosis

However, I see a lot of families in groups for children with sensory processing disorder aggressively pursuing an ASD diagnosis.  I ask these families to slow down.  Treat the symptoms.  Start treatment now. Meet your child where they are.

I also worry about the families who want a diagnosis so badly. It isn't a fix. There is no magic pill or treatment. The hard work is just beginning.

OT University Problem-Based Learning Model

Years ago (around 1996) I clearly remember when I was on a committee at a university that was developing a problem-based learning model and they wanted the input of local therapists on cases.  

During one meeting we had a pediatric case presented. I found that so many of the therapists on the committee, who were not exclusive pediatric therapists, were caught up in the diagnosis of the child. I remember explaining OVER AND OVER again that we treat the symptoms in pediatrics.  No diagnosis was going to change my treatment approach. Unless there were precautions.

We worked on asking questions about this case to make it more “real” for the university to use in their OT students to learn from.  

At the very end, the professor asked “do you want to know the child’s diagnosis?”  I wanted to get up and scream once again that IT DID NOT CHANGE ANYTHING.  It really truly does not matter in my treatment planning.

Final Thoughts

To summarize, if a diagnosis will open up treatment options and opportunities for a child and family, by all means, please get that diagnosis. If you can not get in soon but can start therapy, do not worry that diagnosis is not the be-all, end-all. Spend time finding the best therapy you can for your child.

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