Written by Dr. John Carosso
Let’s set the stage
The process of diagnosing autism is rather straightforward, such that it’s a wonder that so many kids are misdiagnosed. It may come as a surprise to you that, from my clinical experience, the issue is under, not over-diagnosis. In that respect, time and time again I have kids in my office for whom there has been ongoing struggles and difficulties in the home, school, and in the community, and parents are dumbfounded why their child is having such difficulties. In that respect, their child has been evaluated elsewhere and diagnosed usually with anxiety, ADHD, or ODD. However, again, time and time again, parents come to me with a suspicion that ‘something more is going on’ and, by and large, they’re right.
Okay, why does this happen, especially when, in some cases, the prior evaluation incorporated ADOS testing, which is considered to be the ‘Gold Standard’ in autism diagnosis. Well, it happens because children with mild autism usually present pretty well in the structure of an office. They will do well in the areas assessed on the ADOS including eye contact, social referencing, topic maintenance, empathy, general quality of social rapport, and play skills. Also, while the ADOS is supposed to be objective, at times it can be quite subjective as to whether the kiddo actually is, or is not, showing those abilities. This is why a score on any specific test, including the ADOS, is usually not a particularly good barometer of whether a child has autism. I’ve found, countless times, that the ADOS, GARS or CARS may indicate not having autism when a child does, in fact, have autism, or vice-versa. It’s vital that the practitioner use their judgement and experience while conducting a comprehensive evaluation when making these determinations and not rely solely on the outcome of any individual test protocol.
What are we looking for?
What I see in children whom are I ultimately diagnose as mild on the autism spectrum is, first and foremost, a subtle but notable social awkwardness; in that respect, the child may be quite social and engaging but their manner, affect, and sometimes even posture has a rigid if not mildly robotic quality. It’s interesting to note that, in many circumstances, especially when younger, these children may have lots of friends. In that regard, despite being somewhat quirky, these kiddo’s can be well-accepted by peers though being perceived as somewhat “different.” However, parents are often unaware that their child is perceived as a bit unusual by their age-mates. Sometimes this social issue becomes more of a challenge in later grades when peers are less forgiving. Second, almost invariably, these children have a distinct and notable classic autism speech cadence. Third, while they can often maintain topic and are quite conversational, they tend to ramble, are detail-oriented in their conversation, and are not especially mindful of the need for back-and-forth conversation. However, some of these issues can be very subtle; in that respect, if overt, then the diagnosis would be clearer.
So, if the signs are subtle, how do they meet diagnostic criteria?
That’s a great question, given that a diagnosis cannot be made unless the signs and symptoms are actually causing problems. This is where the history and parent-report come into play. In that respect, parents are instrumental in providing the details about what appears to be only minor social awkwardness in the office but, in the real-world, manifests in the child being alienated. What appears to be minor rigidity in the office may, in actuality, be driving parents nuts with routines and compulsions that must be played-out to precision to avoid a tantrum, and on and on it goes. The ADOS, for example, focuses on what is happening in the office between the child and the practitioner; but that’s just one piece of the puzzle.
Children with mild autism are less likely to overtly hand-flap, toe-walk, or spin. They may demonstrate those behaviors but, if they do, they are likely easily diagnosed without confusion or misdiagnosis. In that respect, it’s tough to miss such blatant signs. However, more often these kiddo’s do not demonstrate those classic signs of autism but, rather, are obsessive; they tend to fixate on a particular interest, fear, need for reassurance, or change in routine. They may also be quite particular (everything needs to be in a particular place), be routine-oriented, rule-oriented, and sensory sensitive.
The challenge for parents
Parents see their child from birth to the day of the evaluation. It’s not uncommon that peculiar behaviors and tendencies, seen every day, become mundane and not so peculiar. Also, it’s often easy to explain-away these behaviors and find alternative rationales, especially if a practitioner also provides an alternative diagnosis. Consequently, my heart goes out to parents who are often annoyed, confused, and understandably skeptical when told different things, and provided different diagnoses about their child by different practitioners. My goal is to conduct a very thorough evaluation, with a detailed history and understanding of the current behavior and explain my findings with such detail that it’s easy to comprehend and accept.
Hope that helps
I hope that explanation helps to some extent to explain the process, variables, challenges, and reasons for false-negatives. You can always email me at firstname.lastname@example.org with any questions about your specific concerns or questions; never hesitate to do so. God bless you.
Next, we talk about treatment of mild autism.