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At the beginning of this year, research published in the journal of Developmental Medicine and Child Neurology claims to have a free set of 39 questions, available for free here, that can be used to reliably diagnose autism. The new study is making waves online, but is the ASDQ reliable in screening for autism like it claims?
Before going into the questionnaire itself, it is important to understand how an autism diagnosis is obtained. Then it will be easier to understand what part the ASDQ might play in improving the accuracy of diagnoses.
How is Autism Diagnosed?
Generally, before an autism diagnosis, either parents, teachers or other authority figures notice behavioral difficulties in a child and suggest an evaluation to understand these behavioral differences better. This is often done in school, but may also be done by a private psychologist as well, though this is often prohibitively expensive for most families.
The diagnosis for autism is given by a licensed psychologist after a period of observation and analysis. During this period, the psychologist will interview close family members, called “informants”, use questionnaires, and speak directly with the child making notes along the way.
After their observation(s), the psychologist will organize, consider, and compare the data on the behaviors they observed to see whether an autism diagnosis might be appropriate or if the observed behaviors align more closely with other similarly presenting conditions. Then they will share their findings with the informants and decide a course of action moving forward which may include behavioral therapies or specialized education planning, depending on the child’s specific profile and needs.
Why is Diagnosing Autism Difficult?
There are many factors that complicate an autism diagnosis, however. While there is a clear set of behaviors associated with autism, these behaviors are often seemingly completely unrelated.
For example, two of the things often associated with autism are a lack of social skills or a sensitivity to sensory stimuli. Each individual may have one or both of these issues and every individual will have their own mixture of idiosyncratic behaviors that some psychologists may consider diagnostically significant while others may see as dismissable.
Depending on the culture and gender of the individual, what is considered “normal” and what is considered autistic can vary widely. For example, trouble making eye contact is often associated with autism, but in many cultures, making direct eye contact may be inappropriate with authority figures.
So while a young white boy may be more likely to get diagnosed based on his avoidance of eye contact, a young Arab girl might have this symptom overlooked as it is seen as culturally appropriate for her to not have extended eye contact with an adult or even a peer she does not know well.
This is what many researchers credit for the large difference in males being much more likely to be diagnosed with autism than girls. Other scientists say that this cultural individuality is not sufficient to explain the higher incidence of diagnosis in males.
Is the ASDQ Reliable in Screening for Autism?
This new ASDQ screening tool for autism quickly created buzz online as the best freely available tool in screening for autism. The study claims “Results indicated that the 39-item ASDQ is a psychometrically sound instrument, with evidence of several positive psychometric properties, suggesting it is a highly promising measure for use in both research and clinical practice.” (Frazier et al.)
What are they using to measure the validity of their questionnaire though? The researchers compared their results to results of similar questionnaires and the presence of a diagnosis of autism in their participants.
The more items checked at a higher level means that there are more concerning behaviors and therefore more likelihood of an autism diagnosis being given. There is not an exact way to calculate or decide how many times “often” or “always” can be ticked before it is officially autism.
While this may seem like good evidence, really all this says is that in a condition where you get a diagnosis by answering questions, answering similar questions to what is already asked when giving a diagnosis gives a similar diagnosis. When you do something similar to what is already being done, it is unsurprising that you get similar results.
Really, these types of questionnaires work as a sort of checklist of problem behaviors. Before going in, there are already going to be behavioral concerns that prompted the visit. In the end, it will be up to the personal ethos of the psychologist whether those behavioral concerns line up with and are severe enough to warrant an autism diagnosis.
Which questionnaire is used is largely irrelevant as it simply works as a way for quantify problematic symptoms. While it is important to have some sort of objective measure to ensure professionals are making decisions based on logic, these questionnaires are not objective as they rely on informants’ subjective opinions when giving answers.
For example, one of the questions on the ASDQ asks the informant if their child “Spends too much time on a game or subject that is not interesting to others?” One parent might rate their child’s behavior as “rarely” while another might choose “always” depending on their opinion of how much time is too much to be spending on games and what games or subjects they find “interesting”.
It is easy to see how questions like this rely on a lot of assumptions about what is normal behavior and this can vary widely between cultures, parenting styles, and even individual preferences. While these types of questionnaires might seem like they add objectivity, all they really do is put a facade of objectivity on a foundation of subjective opinion on what is normal.
So does this mean that every autism diagnosis is just assumptions and guesswork? Not at all.
Questionnaires are simply one tool in the arsenal of a psychologist that is used to help make a diagnosis that will help parents and teachers understand a child together. While these measures obtained from interviews and questionnaires are totally subjective, psychologists are well aware of this and keep that in mind when analyzing that data.
While what is normal is still highly culturally specific, if the child is being sent for testing, there are clearly already known behaviors that need addressing. The psychologist may or may not give a diagnosis, but that is actually irrelevant.
What the psychologist is going to do is help the child and their family take mindful steps to support their struggles and be more successful in school. If a diagnosis might help the situation, the psychologist may give one, but if it would not be beneficial, they may not.
The ASDQ along with all the other questionnaires already used simply work as a set of talking points that can bring up behavioral issues to be discussed and considered. The exact answers on the questionnaire itself are much less important than the discussions they prompt.
Whether or not the ASDQ is the “best” set of questions to be used is still very unclear. Even in the study itself, the scientists list a variety of limitations of their findings such as a limited age range of participants and a reliance on previous diagnoses.
More research will need to be done to see if there truly is a most reliable set of questions. However, this set of questions does seem to produce similarly reliable results to other similar commonly used questionnaires.
Should teachers use the ASDQ?
Why not? If a teacher has concerns about their student, using the ASDQ or really any other similar questionnaire can be useful for helping the teacher to think back and quantify their concerns. This information can then be brought to the school’s psychologist or learning support staff to prompt further discussion.
Using the ASDQ as a set of talking points ensures discussion does not revolve around the student disrupting class and being difficult, but instead revolves around the student and their current issues. Discussions about problem behavior can often feel accusatory and personal, but using a questionnaire like this frames the discussion as a concern for their needs rather than a teacher coming to vent about a problem student.
This will lend credence to the teacher bringing forward the issue. Additionally it may also highlight other previously unnoticed behaviors that, while less problematic at the time, still could cause issues in the future and also align with the profile of a person with autism.
While these questionnaires can be useful for teachers to consider, they should not use results to make assumptions about students or the origins of their problem behaviors. As mentioned, these tools are not definitive and should not be used to informally “diagnose” students in schools.
Conclusion
The ASDQ seems to be a reliable tool in the diagnosis of autism based on its similar results to other commonly used tools. However, it is important to remember that all of these tools rely heavily on subjective informant results that can be skewed by culture, gender, and individual preferences.
These tools can, however, be useful as discussion points to ensure important aspects are not overlooked and discussions are prompted on all concerning behaviors that could relate to autism.
The tools should not be used on their own, as then they can come across more like a Buzzfeed quiz, but instead should be used only as one piece of evidence to be analyzed and considered by a professional psychologist. Only then can it be decided whether a diagnosis would be appropriate or helpful.
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References
Frazier, Thomas W., et al. “The Autism Symptom Dimensions Questionnaire: Development and Psychometric Evaluation of a New, Open‐Source Measure of Autism Symptomatology.” Developmental Medicine & Child Neurology, 2023, https://doi.org/10.1111/dmcn.15497.
