Getting a diagnosis for a child with an autism spectrum disorer (ASD) often isn’t easy. Unlike some conditions, such as diabetes or celiac disease, ASDs aren’t diagnosed with a blood test. There are currently no x-rays or scans that can detect ASDs. Instead, diagnosis is made based on caregivers’ description of the child’s development and by careful observations of characteristic behaviors by providers who have expertise with ASDs. In some cases, the path to a diagnosis begins with something as simple as a parent’s hunch or a sense that something isn’t quite right.
Diagnosing an ASD is Difficult For Many Reasons:
- Every single case is different.
- While children on the autism spectrum share similar characteristics, exactly how those traits play out will vary from one child to the next.
- The severity of autism varies considerably.
- Some people with ASDs have very mild forms, display virtually no speech problems, and are capable of independently meeting their needs as adults.
- Some may even be considered gifted and exceptionally bright.
- Others have severe forms of the disorder, with significant disability, and may have a lifelong dependence on others to meet their needs.
- Others have genetic disorders or medically complex conditions requiring medical stabilization before a child’s developmental status can be accurately determined.
Benefits of Early Diagnosis and Treatment
One thing experts do know now is that early diagnosis and treatment of an ASD is very important in determining how well a child lives with it. Herein lies the challenge. While most signs of ASDs are apparent by the time a child is 3 years old, many children are not diagnosed until they are older.
Age of Diagnosis
Age of diagnosis may depend on where children fall on the spectrum as well as other socioeconomic factors. One study found that the average age of diagnosis in children with ASDs was 3.1 years, while those with pervasive development disorder–not otherwise specified (PDD-NOS) was 3.9 years. Among children with Asperger syndrome, the average age of diagnosis was 7.2 years. The study also uncovered some possible explanations as to why some children are diagnosed sooner and others are diagnosed later.
Children are typically diagnosed later if they:
- Live in a rural setting
- Come from households with lower incomes
- Have consulted 4 or more different primary care physicians
- Are oversensitive to pain
- Have a hearing impairment
Children are typucally diagnosed earlier if they:
- Have a severe language delay
- Demonstrate hand flapping, toe walking, and unusual play over a period
- Have an intellectual disability (or global developmental delays)
- Have regressive autism (ie: signs of ASDs appear after a period of seemingly normal development)
- Are male
- Boys are generally diagnosed at a younger age than girls. It’s possible that certain traits in girls with ASDs, such as shyness, may be more socially acceptable and therefore more easily overlooked.
Although diagnosing a child at a young age is important for getting the early intervention that is so critical to children with ASDs, a national study has shown that the median age of diagnosis was 6 years, and more than a quarter of children were not diagnosed until age 8. The good news is that the age of earliest diagnosed cases is dropping. According to the Centers for Disease Control and Prevention (CDC), the earliest cases were diagnosed between 49 and 66 months in 2002; by 2006, earliest cases were diagnosed between 41 and 60 months of age; and by 2008, the age of earliest case identification was between 36 and 59 months.
Parent and Pediatrician Partnership
Early diagnosis requires a partnership between parents and pediatricians. Within this partnership you, as the parent, should feel comfortable bringing up any concerns you have about your child’s behavior or development—the way she plays, learns, speaks, and acts. Likewise, your child’s pediatrician’s role in the partnership is to listen and act on your concerns.
During your child’s visits, the pediatrician may ask specific questions or complete a questionnaire about your child’s development. Pediatricians take these steps because they understand the value of early diagnosis and intervention and know where to refer you if concerns are identified. The importance of this partnership cannot be stressed enough.
It can be difficult to learn that your child has a lifelong developmental disability. Naturally, you as a parent, other caregivers, and extended family need to grieve about this. You will undoubtedly worry about what the future holds. Keep in mind during these difficult times that most children with ASDs will make significant progress in overall function. Some children with ASDs can do exceptionally well and may even remain in a regular education classroom. Many will have meaningful relationships with family and peers and achieve a good level of independence as adults.
It is important to remember that while an ASD diagnosis may change what you thought your parenting experience would be, we now know that children with ASDs and other developmental disabilities can achieve so much more in life as long as they are given appropriate support and opportunities.