A Look into Autism Misdiagnosis

Over these last few weeks, I have been analyzing the results to my survey and trying to find the best way to present the most important responses and ideas to the public. For those who may not be familiar with my ASD diagnosis questionnaire, I have linked a previous post where I thoroughly describe its focus. Please check that out before continuing on with this post.

While I received some interesting responses about certain aspects of the diagnosis process, there were some additional questions in the questionnaire that did not make it to the final presentation but gave striking results as well. One of these was “Has your child been misdiagnosed with another disorder?”. The options for the responses listed various disorders like ADHD (Attention Deficit Hyperactivity Disorder), OCD (Obsessive-Compulsive Disorder), anxiety disorder and other disorders common to ASD. One of the responses was also "not sure what these disorders are". Although I made this an optional question (parents who took the survey were not required to answer this question unless they voluntarily opted to), I still got ten interesting responses.

The graph above displays the counts of misdiagnosis (parents could pick more than one) and what disorder the child was misdiagnosed with. With the disorders listed, the count for ADHD and OCD is overall the highest because they were both interchangeably picked by multiple parents. This can be accounted to the fact that the criteria for an ADHD and OCD diagnosis incorporates details similar to an ASD diagnosis. For example, according to the DSM-IV, both ASD and ADHD have a requirement for “sufficient inattentive and/or hyperactive impulsive symptoms”, which can potentially make it harder to formulate a correct diagnosis. This is why being diagnosed by the correct specialist like a child psychiatrist is so important as they are better informed about the difference between these disorders.

Astonishingly, also about half of the parents who responded to this question were not aware of these disorders. This brings forward the importance of awareness. If more families and parents were familiar with different disorders and the common misdiagnosis of ASD, then they could better understand their child’s diagnosis.

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How Is Autism Diagnosed?

Getting a professional evaluation for autism can mean access to the right support and treatment. Since my project is predominantly focused on the communication of a diagnosis to families, understanding how the process works can be very helpful. Currently, there is no formal medical test that can thoroughly diagnose autism. Instead, specially trained physicians and psychologists administer autism-specific evaluations.

After birth, every child is recommended to be regularly screened for developmental milestones during doctor visits. If a screening or parent raises concerns about the child's development, the doctor refers the child to a specialist who conducts an evaluation.

The Screening Process

The first step of the diagnosis process is a screening. A screening of Autism mainly driven from the parent's response to different questionnaires, and their observation of their child's behaviors.

If a child is of preschool age, then a pediatrician carries out a ‘screening interview’ called a The Modified Checklist of Autism in Toddlers (M-CHAT). This does not provide a complete medical diagnosis, but the answers on this questionnaire are a good indicator of whether the child should be further evaluated by a specialist.

Similar screening tools such as the the Screening Tool for Autism in Two-Year-Olds (STAT), and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older) are initially used as well to determine if a complete diagnostic evaluation is required.

Comprehensive Diagnostic Evaluation

The second stage of diagnosis is a comprehensive evaluation. This helps determine if the the child has ASD or another developmental disorder. It also provides parents a framework for what the child's strengths and needs are, which is important to understand before begining any treatment plan. This evaluation is usually done by a team of professionals that includes a psychologist or psychiatrist, a speech therapist, or other professionals who diagnose children with autism.

A comprehensive evaluation includes a full neurological and genetic assessment, along with cognitive and language testing (speech and language assessment). Specific autism diagnosis assessments are also used such as the Autism Diagnosis Interview-Revised (ADI-R)  and the Autism Diagnostic Observation Schedule (ADOS-G).

The ADI-R is an interview with parents that contains over 100 questions. It focuses on behavior in three main areas: social interaction, communication and language,  and restricted and repetitive interests and behaviors. The ADOS-G is an observational measure that allow the examiner to observe the occurrence or non-occurrence of behaviors that have been identified as important to the diagnosis of autism.

Another instrument used by professionals is the Childhood Autism Rating Scale (CARS) which is given to kids over the age of two and assess the child’s body movements, adaptation to change, and verbal communication. The examiner observes the child and also obtains relevant information from the parents. The child’s behavior is rated on a scale based on deviation from the typical behavior of children of the same age.

This chart from the CDC provides a breakdown of the process.

A diagnosis brings relief to those who have struggled with different behavior difficulties but didn't understand what was causing the challenges. For younger children, it can help determine the earliest intervention possible. A diagnosis can open access to management plans (like therapy) that can improve different skills and ultimately the quality of life.

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"How Well is an Autism Diagnosis Communicated to Familes?": Introduction to the Questionnaire

As I mentioned in my first blogpost, a major component of my research is understanding how well a diagnosis of Autism Spectrum Disorder (ASD) is communicated to families and what can be done to improve the process. Over the next few months as I continue to observe how autism treatment is communicated to families, I will also conduct an experiment. My hypothesis is that a lower understanding of an ASD diagnosis leads to a more stigmatized view of the disorder and a more uncertain idea of how to proceed with management and treatment after diagnosis. To test my hypothesis, I am interviewing families of children with an Autism diagnosis (between the ages of 0-18) through a survey or a personal interview and asking them different questions about their experience of receiving a diagnosis.

I have attached a link to my survey which gives an idea of the types of questions I am asking and a framework for upcoming posts where I will discuss the results of my findings. This survey will be handed to interested families at SARRC, and those who are a part of the PRT and ABA therapy program at SARRC well. I will also try to survey families outside of SARRC.

If you happen to know any families that have kids with ASD, please share this survey or send them a link to my blog! I look forward to sharing what I learn through this survey! Stay tuned!

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