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Autism is 4.3 times more prevalent in boys, as girls often go undiagnosed. Many children are also misdiagnosed as having autism. There are ways to avoid the risk of an autism misdiagnosis.

Case studies

At three years old, Peter was dealing with multiple developmental and behavioural challenges. He had been diagnosed with autism spectrum disorder (ASD) with associated ADHD when he was referred to an intervention centre in Cape Town. 

He struggled to sit and concentrate, tended to be impulsive and lashed out at others as he could not communicate his frustrations. Following observations, the therapeutic team recommended he stay in the younger group at his preschool and attend occupational therapy (OT) to address his emotional, sensory, social and verbal difficulties.

 A few months later, such was his improvement that his parents requested a second opinion from a neurodevelopmental paediatrician who questioned the original diagnosis. By the time he was four-and-a-half years old, Peter no longer had an ASD diagnosis hanging over his head.

Meanwhile, Cape Town parents Nancy and Tim Cockcroft’s toddler, Georgina, was presenting with various developmental delays, specifically speech. When she was two and a half years old they consulted with a speech therapist. She ran tests and diagnosed Georgina with apraxia. However, during speech therapy, Nancy saw no improvement. Feeling that her daughter wasn’t getting much from the process, she sought a second opinion. It emerged that Georgina was actually on the autism spectrum.

Margin for error

Child and adolescent psychiatrist Merryn Young and occupational therapist Kerry Wallace, say there are many reasons for an autism misdiagnosis. There is no one-size-fits-all diagnosis.

There is no objective measure, like a blood pressure reading, and disorders that cause less behavioural disturbance are easily missed. Also, the same symptom can occur within different disorders. Epigenetic factors, such as prematurity and maternal postnatal depression, which makes a child more susceptible to various developmental disorders, needs to be more widely understood, says Wallace.

Neuroscientists such as Dr Aditi Shankardass say we rely too heavily on observable behaviour. We don’t look directly at the brain when treating disorders that essentially originate in the brain. “It is estimated that one in six children suffers from a developmental disorder. These are autism spectrum, sensory processing, learning and attention disorders,” says Shankardass. Based at Harvard, Shankardass has done pioneering work using EEG brain scanning. She has discovered that almost 50% of children diagnosed with autism were found to be incorrectly diagnosed.

A good example of an autism misdiagnosis is seven-year-old Justin Senigar. When Shankardass and her clinical team used the EEG technology to look at Justin’s brain, it was found that his symptoms mimicked autism. Two months after Justin went on anti-seizure medication for his brain seizures, his vocabulary went from three to 300 words. His communication and social interaction improved so dramatically that he was enrolled in a regular school. 

 Markers of a good assessment

“A good assessment will be comprehensive, starting with familiarising both parent and child with the process and explaining their rights,” says Young. “Time should be spent with the family together as well as with the child and parents separately. Contact may need to be made with several other family members.” The clinician should give feedback in understandable terms to both the child and parents. You should feel able to disagree or ask questions at any point and should not feel rushed into decisions.

Discussions with your clinician will include clarifying the current concerns, screening for other difficulties that commonly co-occur, along with getting a family history and full developmental history. “You should be given the opportunity to disclose sensitive information in private, away from your child, if you so wish,” points out Wallace. Symptoms may change over time, so always mention anything new that worries you, as a different diagnosis may be more appropriate. For example, bipolar disorder often presents initially with a depressed episode. It is only once a manic episode occurs that the true diagnosis may be revealed.

Observations of child and caregiver interactions should take place and, based on the interventions the child needs, a decision needs to be made as to what further assessments are required, whether it is occupational therapy for sensorimotor or functional developmental delays or referral to a medical specialist for a diagnosis or medication.

 An educational assessment may have to take place and further information may be needed, with your permission, from other healthcare workers and teachers. Rating scales may be used and underlying medical conditions should be considered.

For more about understanding autism

 When to get a second opinion

  •  If your doctor is rigid 

Young says your clinician should be able to address any worries you have about your child’s assessment or management plan by explaining their thinking. They should be willing to adjust their assessment should more information come to light. There is no one-size-fits all solution. 

  •  If you haven’t been given options 

Young says it is unusual for there to be only one form of treatment available. Your clinician likely has valid reasons for suggesting a particular course of action. If you are not happy with it, other options should be made available. 

  •  If you feel bullied into an unsuitable management plan

Seek a second opinion from a clinician if your child does not seem to be improving. There could be an autism misdiagnosis.

Visit Autism South Africa for more information

Lucille Kemp