Expert Opinion / Interview · April 21, 2015
Interview with Terisa P Gabrielsen PhD, NCSP Interview by Tony Nimeh MD
Terisa P. Gabrielsen, PhD, Assistant Professor of School Psychology at Brigham Young University, specializes in autism spectrum disorder. She talked to Dr. Tony Nimeh of PracticeUpdate Primary Care about the benefits of early diagnosis and intervention in very young children suspected of having autism and how to identify the early signs, even in infants as young as 2 months.
Role of physician and parents in identifying autism
Dr. Nimeh: Dr. Gabrielsen, what is the role of the physician vs parents in diagnosing autism?
Dr. Gabrielsen:
The physician’s role
Let me talk about the physician side first, and then about the parent side. Most physicians don’t have extensive training in autism. They’re aware of it. They know what it is. But, first of all, they haven’t had a lot of experience with it in their training, not a lot of extensive training, and the research that we recently published1 indicates that it’s really not a matter of how much training someone’s had because even our experts missed 39% of the kids if they relied only on their observation and they only had 10 minutes. They still missed a significant portion of the kids.
So, it’s not the question of whether physicians are trained well enough. It’s more in the nature of autism itself. In some kids, it’s very immediately obvious, and most clinicians can see it. But, in other kids, it takes a lot more time for the little subtle signs to accumulate sufficiently for a clinician to figure out that this child is not developing typically. Unfortunately, most physicians don’t have the luxury of spending extended amounts of time with a child.
It’s not the fault of the physician, who is doing a great job. The nature of autism is such that the observation skills that a physician is so dependent on are not going to be reliable enough in many cases.
The parents’ role
Parents need to be aware of developmental milestones and typical infant and toddler behavior in order to start the conversation with their pediatricians. Screening is a great way to start that conversation from either direction.
If the pediatrician has concerns, the screening results can be a good way to start the conversation with the parent or vice versa. The parent can use the screening questions to start the conversation. One of the things we know that makes identification more difficult is when there’s a difference in culture. In cases in which the family is from a minority culture, or a lower socioeconomic status, or speaks a different language, the language that a parent uses to describe the child’s behavior may not match what the physician is expecting to hear to trigger a concern for autism.
In addition to language difficulties, there may be cultural differences in what type of behavior is considered typical or not typical at a certain age. So, a parent may not be reporting the types of behavior that the physician would be looking for. Also, there has been some research to indicate that a physician without standardized tools will have a tendency to lean toward a different explanation of behavior in a child of a minority culture.
On the other hand, if we introduce a standardized screening tool, the cultural difference goes away, and physicians who use a standardized screening tool are more even in their referrals across cultures and ethnicities for further evaluation. The unintentional bias kind of disappears once we introduce a standardized screening tool.
The relationship between parents and pediatricians is very complicated. When we’re talking about their child, a lot of factors come into play; standardized screening can even that playing field a little bit for both sides.
Criticism of the screening tools
Dr. Nimeh: What are the criticisms of the screening tools?
Dr. Gabrielsen: Some of the criticisms for screening involve false positives. This is true with any screening measure; you do have to worry about false positives and false negatives. The false-negative rate for a tool such as the M-CHAT is quite low, which means it catches most kids—not all, but most kids who are of concern. If we only go as far as those 20 questions, the false-positive rate can be pretty high, but once we go a little bit deeper into the follow-up questions, the false-positive rate drops off dramatically and accuracy improves.
What we have found in our research is that, if a child is screened though the M-CHAT and the concern is there, and then goes through the follow-up interview, and there’s still a concern, by the time we see that child for a full evaluation, we’re seeing someone who definitely needs a referral.
The children don’t all have autism; but, in our studies, there was some kind of delay—sometimes autism, sometimes speech, sometimes something else. But the point is that the screening process got the child in for an evaluation, which was necessary. The children all didn’t have autism, but they did all need an evaluation. It was very rare that we encountered a child who had screened positive who really had no delays whatsoever.
Steps after the autism diagnosis
Dr. Nimeh: What are the next steps once a child is identified with autism?
Dr. Gabrielsen: The American Academy of Pediatrics also has a wonderful article about management of autism spectrum disorders for providers,2 as does Autism Speaks for parents. A wide range of autism toolkits are being developed by the Autism Treatment Network that help physicians and families know where to go next for help on a variety of topics. Early-intervention networks are always improving their autism services, and getting the children into the educational system at a very young age, either in early intervention or, at minimum, at age 3 years, can help with treatment planning. We wish there were enough therapists and providers in the country to meet all of our children’s needs, and the truth is that we’re still trying to get there. There’s more need than we can provide, but the research is showing that some treatment, even if it’s not as much as we want for each child, is better than no treatment. Some action taken is always better than waiting for the perfect action. It’s better to start with some intervention for identified delays, even if we don’t know for sure what’s going on with the child in terms of ultimate diagnosis.
For example, if the child needs speech, then let’s start with speech, even if we’re not sure it’s autism yet. Let’s start with the speech skills now until we’ve got a clearer diagnostic picture. The rule is always some intervention is better than waiting, and I think the CDC guidelines and American Academy of Pediatrics would all concur with that. Learn the signs. Act early. The key is act. Don’t wait. Even if there are some unknowns and we’re not 100% sure, we need to go ahead and act on the signs we can see, such as speech delay, and start getting the child in treatment to develop skills as early as possible.
Waiting is the one thing that parents regret more than anything, and they often refer to that as lost time in their child’s life.