What happens at the first pediatrician appointment for autism?
If you have wondered whether your baby or child has autism, a first step is often an evaluation in the pediatrician’s office. Yes, it can be the same pediatrician that checks growth charts and treats ear infections. Many pediatricians do not formally diagnose autism (especially in one visit), but they can get the process started and help with many resources.
In other words, if autism is even a small concern, meeting with your usual pediatrician is a perfect place to start.
This post covers what to expect at the very first appointment with a pediatrician if you’re thinking about autism. This is before an autism diagnosis. Autism is also referred to as autism spectrum disorder or ASD.
Appointments with specialists for the complete evaluation and formal diagnosis are different than what’s described here. Some of the specialists are developmental pediatricians or clinical psychologists. This piece goes over what may happen when a parent asks a doctor for the first time, “Could my child be autistic?”
Of course there are many approaches to such appointments. What follows is just one common scenario. There are many “right” ways to handle this kind of visit. And, yes, some general pediatricians are also equipped to make (and fully address) an ASD diagnosis. This article covers what may happen at an office that usually needs to refer for the formal diagnosis.
(See this article if you have general concerns about development or milestones).
Scheduling the first appointment for a concern of autism
Every office has its own policies, but generally speaking, it’s a good idea to call about your concerns first. Ask for an appointment to see if your child might be autistic (for example). This way, your child can get an appointment slot that’s the appropriate length of time.
The pediatrician may appreciate the advance notice so they can organize resources needed prior to the appointment.
And, not all pediatricians are able address all autism concerns during a regular well child check up. (It may be a matter of scheduling, insurance, or office policy). So, just ask.
All this being said, if you’re ever worried, please let the pediatrician know, whatever the kind of appointment. They’ll be able to either address your concerns or arrange a time to do so.
What happens at the actual pediatrician appointment when evaluating autism?
The beginning of the appointment will likely be very familiar if you’ve been to the office or clinic before. The check-in and time in the waiting room likely won’t be any different. Most visits may start with:
- vitals like height, weight, and temperature
- review of any medication or health changes
Both of these steps are often done by medical assistants (MAs) or nurses before the doctor comes in. If you think getting vitals will upset your child due to sensory or other concerns, you can consider asking for them to be done after the visit. Sometimes a child will feel more comfortable at the end of the appointment. In many cases an office can accommodate, but of course it’s not always possible. It doesn’t hurt to ask.
Next, the pediatrician usually starts the visit. Each doctor has their own style. This is one common approach:
First, a conversation about parent’s concerns (why the parent is thinking about autism)
The pediatrician may ask an open ended question about why the family is concerned about autism. They may want to know what specific things parents have noticed in the child. Sometimes, a teacher or family member is the one concerned and the parent may not know why. That’s okay too. The key thing here is for the parent to just share whatever they do notice or what another observer has said.
It’s okay to share any emotions a parent may have with these concerns.
The pediatrician may ask specific questions about a child’s development
A logical next step is for the doctor to ask some specific developmental milestones. They may ask at which ages the child learned to do certain things. This includes speech milestones, like when a toddler said their first words or made a two-word sentence.
The doctor may ask specific questions about overall health.
Especially if the child is new to the physician, there may be additional questions about the child’s health. They may want to know more about diet, bowel habits, or recent illnesses, for example. If the child is new to the medical practice, there’s likely several questions about the child’s birth history, any hospitalizations or surgeries, and any chronic concerns. There may also be questions about family members to see if any disorders run in the family.
A physical exam is often part of the first visit for an autism concern.
Ideally, the pediatrician spends a few minutes examining the child, listening to their heart and lungs, looking at the skin, examining the abdomen, etc. A lot of the exam depends on what has already been discussed.
Depending on the child, this may be no big deal at all. Or, it could be an impending catastrophe.
Please note though, that during the chat at the beginning of the visit, the doctor is likely closely observing the child. They note behavior, any speech, crying, interactions with family, and any movements or mannerisms. So, by the time they reach for their stethoscope, much of the “physical exam” has already been done.
Sometimes a very thorough physical exam can be postponed a little based on the child’s comfort level. Other times, it’s absolutely necessary. Depending on the conversation and observations, a physician may need to look for further clues found on the skin or as part of a child’s muscle tone. Sometimes an eye exam provides more information. The list goes on.
The pediatrician considers all possible diagnoses (not just autism), so these physical signs can help narrow things down. It depends on each child.
Screening tests for autism at the first visit
If a parent is worried about autism, at some point during the first visit with the pediatrician, there may be a screening tool.
Common screening tests include a series of questions the parent answers about their child. This may be in the form of a piece of paper on a clip board. Or, it may be a questionnaire on a tablet. Many times, the MA or physician will just read through the questions and ask them one by one.
One of the most common screens is called the Modified Checklist for Autism in Toddlers – Revised with follow-up (M-CHAT-R/F). There are also other screening tools available. The American Academy of Pediatrics (AAP) recommends all kids be screened for autism at ages 18 and 24 months, so the screening tool may already be familiar to a parent.
It’s worth noting, some pediatricians will use the screening tool at the beginning of the visit as a way to direct the conversation.
The most important point with these screening tools, such as the M-CHAT-R/F, is that they do not diagnose autism or autism spectrum disorder. They merely give the pediatrician information about someone who may be “at risk” for the diagnosis. It just tells us whether more evaluation is needed. That’s all.
And, the screening tools aren’t perfect. They’re very useful, but not accurate every single time. It’s just one piece of information we take into consideration.
What’s the next step after this appointment?
So, after starting this evaluation for autism, including completing a screening tool, there are a few possible next steps. It depends on the results of the conversation, physical exam, screening tool, and any other information gathered. It also depends on parents’ priorities and concerns.
Possible outcomes and/or pediatrician recommendations:
- Specific therapy to address a specific issue brought up during the visit. For example, the physician may recommend speech therapy for a speech delay. (Some referrals can be done through the state’s Early Intervention program or the local school district).
- Referral to a specialist for further and more complete evaluation for autism. Again, the initial screen done at this first visit does not diagnose. So, if someone screens “high risk,” it does not mean they have autism necessarily, it just means they may need more evaluation.
- Referral or information about local and community resources. Even without an official diagnosis, there are supportive organizations in many communities. Some help navigate the healthcare or school systems. Others provide emotional support. A child’s pediatrician will know what it available and what can help different families.
- Start evaluation for another diagnosis. It’s possible that after an appointment like this, the pediatrician has a new concern the parents hadn’t yet considered. In this case, they may start the process to investigate this other concern. (For example, did they hear a previously undetected heart murmur? Or is the behavior described related to a sleep issue that needs to be addressed? Etc).
- Explanation, guidance, and education on the child’s development, whether it is typical or not.
- Sometimes, by the end of such an appointment, both the parents and doctor agree that no more investigating or referrals are needed. They can follow up with each other at the child’s next well check or sooner if something new arises. It all depends on what happens during the appointment itself. What started out as an appointment with a concern for autism often evolves into something else once more information is gathered.
It’s important for parents to share, if they can, what they need most from this visit. This helps the pediatrician do their best to help as much as possible. Is it paperwork for extra help at school? Are there behavioral concerns? Do they need community resources? Every family has its own challenges and there are many ways to help.
A few frequently asked questions about this initial appointment
In my experience, a few concerns commonly come up for these appointments:
- At what age is it okay to bring up a concern for autism? The answer is: any age. There is no age too young or too old to talk to your pediatrician about developmental concerns in your child. They can address any questions from infants to teens.
- How should my child act during these appointments? There are no expectations or judgement when a parent has questions about their child. Sometimes, parents apologize for “misbehavior” or they expect their child to demonstrate certain movements or behaviors. This is not something to worry about (!) even a little. The child does not need to perform. They can just show up as they are. That being said, if a parent has concerns about specific movements the child makes, it’s helpful to make a video at home to later review with the pediatrician.
The first appointment with a pediatrician to evaluate autism doesn’t always end with a diagnosis.
This is disappointing to many families, but an autism spectrum disorder diagnosis requires a lot of information. Unfortunately it’s not as simple as one or two questions or a quick blood test. However, the first visit with a pediatrician can help get the process underway as efficiently and compassionately as possible. We know that the earlier children with ASD get whatever extra support they need, the better off they’ll be in the long run.
And, as mentioned earlier, many times children can be referred and start getting support in whatever area they have challenges, even without an ASD diagnosis.
So, even though it feels like a long process, it’s not impossible. Asking for an evaluation as early as possible does pay off.
Maya M. Mahmood, D.O., FAAP is a board-certified pediatrician and mom. She is passionate about parents having evidence-based information to help their families be healthier.
Disclaimer:
This is for information only. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
