Navigating the uncharted waters of parenthood can feel uncertain under the best of circumstances, but this is true even more so for parents who might suspect their child exhibits symptoms of Autism Spectrum Disorder (ASD). Here we offer some general information to help parents understand when it is appropriate to seek out an ASD evaluation, what they risk by delaying evaluation, as well as information regarding misdiagnosis and non-diagnosis.
When should ASD be detected and diagnosed?
According to studies done by the CDC, for 85% of children ultimately diagnosed with ASD, their parents had concerns about their development before the age of three.
Meaning signs of ASD are apparent from a very young age, and diagnoses can be made by age three and often earlier. Yet crucially, only 42% of children diagnosed with ASD were seen for an evaluation before three years of age, with 39% being evaluated after age four. The CDC cautions that delaying evaluation even just those couple of years can have an adverse effect on the child’s response to treatment.
Known risks to delaying evaluation + diagnosis
Delaying evaluation of ASD also delays treatment. It is widely accepted amongst medical professionals that the most effective treatment for ASD is behavioral therapy, but according to the American Psychiatric Association, as children age and their behavior become less malleable, behavioral therapy becomes less effective. Delays of more than two years between first concern and a first diagnosis made behavioral therapy less effective and were associated with higher use of alternative treatments which are unproven, risky, and thus controversial. Additionally, delays in diagnosis increase the possibility that medication is utilized, which many parents understandably see as a last resort for treatment.
Astoundingly, the CDC reports that 30% of children who met this study’s case criteria for ASD had not received a formal ASD diagnosis by age eight, potentially pushing them into an age bracket where behavioral therapy is less effective. Subsequently, we can say that early evaluation is critical, preferably seeking out medical advice upon first notice of developmental differences or before age three. But unfortunately, even when an evaluation is sought, often the proper diagnosis is not made immediately.
Factors that contribute to delayed or misdiagnosis
ASD shares symptoms with other conditions, most notably with ADHD, and in fact, an individual can have both ADHD and ASD. This is unfortunate because often medical professionals may diagnose ADHD but stop there, not recognizing that the two are not mutually exclusive. Similarly, doctors may make a tentative ASD diagnosis or simply an ADHD diagnosis, but ask parents to wait until the child is school age for a definitive evaluation in order to get a clearer picture of social behavior, but in delaying until school age, years of behavioral therapy are missed.
Along the same lines, due to fear of stigma, it’s possible for parents themselves to not fully acknowledge the breadth of symptoms until the child’s social behavior becomes visible after starting school.
Additionally, as with so many other health issues, diagnoses can vary when socioeconomic factors, race, and gender are factored in. Children from divorced or single-parent homes are likely to be diagnosed later according to the Kennedy Krieger Institute. Similarly, the CDC reports that white children are diagnosed more frequently and earlier than Hispanic or Black children. And finally, there’s a gender disparity when it comes to the diagnosis of girls with ASD. Girls are often not diagnosed at all or experience a delay in diagnosis due to the fact that ASD symptoms present differently in girls and also girls are more masterful in masking the symptoms of ASD.
One final factor that can lead to delayed diagnosis or misdiagnosis is the type of medical professional that parents seek out. Many parents may simply consult their family physician and move forward based on that evaluation. But often a physician with a psychological background is more appropriate and thorough. A family doctor is a great place to start, but stopping there could lead to no diagnosis at all, delayed diagnosis until school years, or misdiagnosis of ADHD.
Steps parents can take to avoid delayed diagnosis
- Be cognizant from a young age of indicators, with a mind toward the fact that ASD can present differently in girls
- Start with the family doctor, but seek out a specialist, don’t let it end there
- Don’t wait until school age to assess social behavior, seek evaluation and behavioral treatments prior to then
- Don’t equivocate ADHD and ASD symptoms and don’t exclude ASD in the presence of ADHD
- Whenever possible, seek to educate other parents, providing support and relevant information, especially to those in your community whose family is vulnerable to delayed diagnosis and all the risks in development that that brings with it
Crucially, the more we talk about ASD within our families and communities, the more we lessen the stigma of a diagnosis which encourages more and more families to seek the care that their child may need.
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