And then comes the Big Gulp: the moment when you need to tell the parents that their child has failed a screen for autism. You are better prepared for this than you might think, as this conversation requires the same skills you have used to interpret tests and x-rays in the past.
I start out reminding parents about the questionnaire, and reiterate that this screen was "done to detect any problems in development, language, or interaction (such as autism or language delays) that need to be addressed." It is only fair to let parents know that the screen was for autism, even though the "A" word is one that evokes panic that we wish we could avoid. "Autism" can be rolled in with some of the other possible reasons for a "fail" score in your discussion. It is much worse for parents to hear this word for the first time in the course of an evaluation by strangers than it would have been from you.
If you have done the M-CHAT follow-up interview, you will have their examples of the child’s concerning behaviors. If not, ask for examples – even if you are certain there is a problem – to have specific behaviors to refer to when you next recommend further evaluation. Using structured items to interact with the child yourself – such as PAFOS (Pediatric Autism Features Observation Scale) in CHADIS, or the Autism Mental Status Examination – will give you more confidence as well as data to help you convince the parents about referral. Although your own data may aid communication, primary care observations are not reliable predictors, so the lack of confirmatory observations should not deter referral.
Instead, use them to say, "Did you notice how, when I pointed to the light, Aaron did not look up or show any interest?" and then ask if the parents have noticed this and what they think is the reason. You can go on to say that the responsive behavior is "something we expect at this age. Sometimes children who are not interested in things that are pointed out to them have a problem like autism. There are good ways to teach a child these skills, but first we need to be sure if this is a problem for him."
With any bad news, I want to be sure that the family knows that I am on their side and will work with them through anything necessary that results from a referral. I like to say, "I hope I am wrong, but we need to find out" in order to leave the family essential room for hope.
No screening test is perfect, nor is any informal observation in the course of a visit – you can say this, too. Autism is a very difficult condition to explain, and asking one parent to convey the message to the other caregivers on his or her own is not ideal. I always offer to make a call or another visit to explain my concerns to the other caregivers if the parent would like this support. It is well known that referrals are more likely to be completed when family members agree that there is a significant problem, that intervention can be helpful, and that there is family support for going. Given the critical importance of the earliest intervention possible to optimize outcome, working carefully in making a referral for treatment is well worth the effort.
Whether the family initially accepts evaluation or not, ensuring a follow-up visit with you is critical. That requires a tracking system or registry for children with positive screens, which is something electronic health records do not usually do. Whether because of cost, availability of appointments, psychological denial, or lack of family agreement, a surprisingly low percentage of parents follow through on referrals, even with the current public awareness of autism. It is crucial that you see the child again within a few months to check on their status, the results of any testing, and family acceptance. If there is a different diagnosis – such as a language delay – then support the family in addressing it.
When a child screens positive, it is important to initiate a referral for intervention at the same time as referral for a more-definitive assessment, unless evaluations are readily available. The precious months spent waiting for a full evaluation can be a very valuable time of intervention to help the child progress and also to contribute "response to intervention" information that can help with diagnosis and/or school placement.