Why Some Parents Don't Pursue a Formal ASD Diagnosis for Their Child

By Mark Hutten, M.A.

"We suspect our 4 year old (Ryan) may have a form of autism, but my husband is reluctant to get a diagnosis for him for fear that it will cause more problems than it solves. What say you? I'm torn on this issue! I want to do what's best."

Because the symptoms of High-Functioning Autism (HFA) can be subtle, moms and dads may not recognize any differences in their youngster until he is age three or older. Pursuing a formal diagnosis is a family's individual decision to make.

There is no “correct” time to form this decision, although many parents agree that they wish to know their youngster's diagnosis definitively and as early in their youngster's development as possible.

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If you are discovering that the criteria for HFA might have application for your youngster, then you are faced with a decision about seeking a diagnosis. You may NOT wish to pursue a formal diagnosis at this time for one or more of the following reasons:

You are scared or in denial of the situation
You are worried that your youngster will be stigmatized or singled out
You don't believe in labeling people's diversity
You don't feel that your youngster's differences are causing detriments in his life significant enough to obtain a diagnosis
You'd rather wait to see if anything changes as your youngster continues developing

The benefits of obtaining a diagnosis may be:

Accessing a system of services and supports designed to give your youngster a head start in life as early as possible
Being able to educate family, friends, and neighbors about your youngster's unique way of being when appropriate
Being able to educate your youngster in order to promote self-awareness and self-advocacy, as needed
Being able to put a name and a framework to a collection of symptoms and traits instead of perceiving it all as your youngster's “bad behavior” or somehow your fault
Understanding and appreciating sooner your youngster's lifelong unique qualities, personal needs, and talents

Grown-ups with the disorder who were never diagnosed as kids often ask, “Would it have been helpful to have had the diagnosis at an early age?” We are still a long way from effectively understanding autism spectrum disorders in a global sense, but having this knowledge early on in the lives of many adults could have aided them to:

Avoid struggles with mental health issues, or be better prepared to care for one's mental health
Be better able to initiate and sustain relationships
Be better equipped to locate viable employment opportunities that best match skills and talents
Be better prepared for higher education, or trade school
Be better prepared to avoid situations in which one may be unwittingly exploited
Experience greater success in school

A group of children with an autism spectrum disorder was asked a question: “Is it helpful to know you have it?” They were unanimous in explaining that it was helpful and cleared up a lot of misinterpretations people had about why they do what they do.

If you determine that HFA best describes your youngster's way of being and are interested in pursuing a diagnosis, your first course of action is to seek a referral to the appropriate clinician most qualified to make the diagnosis.

Resources for parents of children and teens on the autism spectrum: