As awareness and acceptance expands, parents are asking, how can I know if my toddler has autism?
April is Autism Awareness Month! We are aware that Autism exists, so the Autism Society of America has renamed this month as Autism Acceptance Month. This subtle change reflects the history of the name autism and the ongoing hope of learning and understanding more about individuals who carry this diagnosis. As awareness and acceptance expands, parents are asking, “how can I know if my toddler has autism?” Autism in toddlers is a new topic many parents are thinking about. To begin, let me tell you a story:
For this story, the names used are not real.
I opened the door to the exam room and saw my next patient. Two-year-old Jimmy, squealing as he opened the sink cabinet door over and over. His parents sat nearby with their nine-month old on the lap, watching little Jimmy. I greeted them and Jimmy’s little sister looked up at my face and showed her broad smile. I brought out my bag of toys and rolled the car toward Jimmy. Little Amy watched the car roll and looked up at me, reaching out her hand toward the car. I offered her a stuffed bear and she grabbed it and gave it a hug.
Jimmy was still opening and closing the doors and had not looked up at me yet. I rolled another car toward him. He took it and turned it upside down. Jimmy felt the underside and spinning the wheels. He threw it into the sink cabinet and crawled in after it.
Jimmy’s parents told the story of his pregnancy and birth. He met his milestones for rolling over, sitting, and was actively walking by one year. Jimmy loved arranging water bottles across the kitchen floor in a line. He let out loud squeals when he was hungry. Jimmy would then grab his mother’s hand and pull her over to the cupboard when he wanted a snack. His parents noticed that he had just two words.
They thought he was a bright, busy, active boy who just needed more time to speak. His parents had not noticed any problems before, however, they were starting to notice that his sister Amy was already babbling, reaching out to them, looking them in the eyes, and playing back and forth with them. They realized that Jimmy never did those things.
I brought out a bubble jar and blew some bubbles. Amy laughed and Jimmy jumped up and tried to catch them. I put the top on the bubble jar tightly and handed it to Jimmy, saying, “Your turn”.
Jimmy took the bubble jar, tried hard to open it, then placed it on my knee. He took my hand and put it on the jar top. After several tries with my hand, he gave up. I put the bubble jar on a shelf and typed some notes on the computer. Jimmy came over and backed up to my chair, pushing himself onto my lap. From there, he got a knee on the desk and reached up for the bubble jar.
Jimmy’s parents said they were amazed at how Jimmy was warming up to me. I had to explain that Jimmy was just trying to get to the bubbles. He was not looking in my eyes, making any facial expressions to interact with me, or making sounds to ask for help. It was as if I was part of the chair and a means to get to what he wanted.
What about Jimmy? Does he have autism or just a speech delay? Stories similar to Jimmy’s often occur during my Developmental-Behavioral evaluations of children who are referred to answer those questions. Before we get to that, here is some background on autism.
The name “Autism” was given by American doctor Leo Kanner in 1943 to patients he was seeing in an institution who showed two essential features. First, severe problems in social interaction and connection to others starting in childhood and, second, resistance to changes in daily life. Over time, other symptoms were added including language delays, repetitive behaviors, fixations on topics or items, and lack of eye contact.
At the same time during World War II, Austrian doctor Hans Asperger was seeing children and young men who had awkward social skills, stilted speech, and intense, restricted interests. His writings were not published in English until the 1990’s when British researcher Lorna Wing presented his findings and identified patients with Asperger’s Syndrome. After much debate about how Asperger’s and Autism may be related, in 2013 a consensus appeared in the Diagnostic Statistical Manual, DSM-V. This study introduced Autism Spectrum Disorder and an overarching diagnosis to include both categories.
The criteria for Autism Spectrum Disorder include two main areas. Part A refers to Social Communication deficits, which must include non-verbal communication skill deficits, difficulties with conversation and small talk, and trouble forming and keeping relationships with peers. Part B covers Repetitive Restrictive Behaviors and includes four areas, requiring at least two. Those are
1. Repetitive movements or speech patterns such as echolalia and scripting.
2. Intense, restricted interests in patterns, topics, toys, or other items.
3. Resistance to changes and transitions, becoming upset when going from one activity to another, trying new things, etc.
4. Sensory-seeking or sensory overload issues such as seeking movement, touching, licking items, or avoiding certain textures, foods, clothing, smells, or noises.
The Autism Spectrum Disorder (ASD) criteria in the DSM-V has additional components, especially noting if there is low cognitive ability, language deficits, other medical conditions, mental health issues such as anxiety or depression, and a past diagnosis of autism or Asperger syndrome. The new feature of the ASD diagnosis is the assignment of Levels I, II, and III for Mild, Moderate, and Severe.
The level is based on actual daily living function and the amount of support required to assist the person in daily life. The assigned level of severity can change as a person improves over time with appropriate therapy and support. The good news is that a child may move from Moderate to Mild with improved coping skills and maturity. The core autism features and diagnosis remain – a person continues to have autism, the severity level can improve.
In the past, the average age of diagnosis of autism has been five years. Children were often seen as having developmental delays that just “needed more time.” Unfortunately, children went on to have more behavioral difficulties and communication deficits without getting adequate support at school or at home.
The new ASD criteria include the phrase “has now or has had in the past.” That means that I can see an eight-year-old for the first time who has social skill issues and sensory overload problems who may have spun in circles and flapped his hands as a toddler. I can use that information from his parents to round out the diagnostic criteria for ASD even though he no longer flaps.
Many researchers are looking for ways to notice signs of autism in infants and young toddlers. Some of the DSM-V criteria do not apply to such young children. For social communication we can find the best clues in watching for back and forth non-verbal cues. It is all about eye contact! We know that infants will fixate on the parent’s eyes when the parent speaks. Even before the first “social smile,” an infant will look at the parent and make slight lip movements and raise eyebrows synchronized with the parent’s phrasing and voice. This happens much more at six and nine months.
Researchers have proposed using a “pull the toy away” test for nine-month old infants. It goes like this: give the infant a favorite item. Then take hold of it and try to pull it from the infant’s grip. The typical baby will look right into your eyes and make a facial expression (a “dirty look”), frown, or cry. The babies who went on to have an autism diagnosis when tested at age two were the ones who kept holding tightly to the toy, looking at the toy itself and pulling without making eye contact. They often cried hard and gave up, looking around but not at the parent.
There is a standardized testing kit used for assessing toddlers age two to three years old called the STAT. The test is often used in early intervention programs to evaluate toddlers with developmental delays for signs of autism. The key features of this test can help a parent see a toddler in a new way that emphasizes social communication skills rather than the usual gross and fine motor and language developmental milestones.
Try back and forth play with a ball or car – does your toddler roll it back to you?
Put some doll items, a doll bed, blanket, or doll bottle in front of your toddler to watch for nurturing skills like feeding the doll, putting it in the doll bed, giving the doll a hug.
Bubbles – Blow some bubbles for your toddler. Then put the cap back on the bubble jar very tightly and give it back saying, “your turn.” Observe for direct eye contact and some sound or verbal request as your toddler is unable to open the jar and needs your help.
Food item – Put some favorite food in a tightly closing container. Offer some to your toddler and let them eat it. Then, close the lid tightly and give the container to your child. Observe your toddler for direct eye contact and a sound or word as they ask for your help.
Directing Attention – This involves your child looking at something, then looking back to you with eye contact and a sound as they look for your response to the item
Balloon – Blow up a balloon, hold it over your head, count 1, 2, 3 and then let it go. Try to stay neutral and watch your child. Does your toddler look back and forth between you and the balloon with a surprised expression? Does your toddler point at the balloon and look at you?
Puppet – Put a puppet on your hand and use the puppet to hold a pen and write or draw. Don’t comment on the puppet. Try to stay neutral as you use your puppet hand to touch your face or other items. Watch your toddler for a surprised expression, looking back and forth between your eyes and the puppet.
Bag of Toys – Prepare a non-see-through bag of toy items that are new to your toddler. Put the bag in front of your child and say, “look what I have!” Watch your toddler to see if they open the bag, reach in for an item and then look at your eyes. The idea is that your toddler sees something new and wants to look at you to see what you think about it.
Noisemaker – While your toddler is not looking at you and is involved with some other interest, make a loud noise with your cell phone or other noise-making item. Keep your face neutral and watch to see if your toddler looks for the sound and then looks in your eyes to direct your attention to the noise.
Shake a rattle – Hold up a rattle and say “look what I have!” Shake the rattle back and forth and say “bop, bop, bop” along with the shaking. Hand the rattle to your toddler and say, “You do it!” or “Your turn!” and observe to see if they imitate what you did.
Roll a toy car – Get your toddler’s attention showing them a toy car. Then, roll the car back and forth in front of your child and make a “whee” sound. Hand your child the toy car and say “You do it.” Watch to see if your toddler rolls it back and forth the same way.
Drum your hands – Use your hands to drum on a surface saying “boom, boom, boom” with each hand hit on the table. Point to your toddler and say “You do it” or “Your turn!” Watch to see if your toddler imitates what you did.
Hopping Toy Animal – Take a small toy animal and make it hop across a surface, saying “beep, beep, beep” as you make it hop. Then, hand the toy to your toddler and say “Your turn!” or “You do it!”.
You will notice that each part of the STAT screening tool is meant to give your toddler an opportunity to share a moment of excitement or needing help with you by giving direct eye contact. Some items call for a sound or word as well. At first, many parents believe that the toddler is truly making back and forth communication.
However, the test items will help a parent to notice if the critical eye contact is really taking place. Many toddlers with autism appear to ask for help but are actually taking the parent’s hand and pulling them to a location in order to get an item or something to eat without making facial expressions or eye contact.
Speech delay by itself can be a sign of autism but does not mean that a child actually has autism. Much more significant clues are: lack of personal interaction, making a request without eye contact, not sharing back and forth play with parents, not pointing in order to share attention with another person (joint attention), and making repetitive/restrictive behaviors (RRB’s).
Let’s go back to Jimmy and his family for a moment. His evaluation included a detailed review of his prenatal and birth story, his medical background, current issues, family background of relatives with developmental delays or autism, tendencies toward anxiety, or relatives with exceptional abilities and interests but reduced social skills.
Jimmy had a full physical examination looking for unusual features of his ears, eyes, nose, mouth, and neck, the creases on his palms, his hand shape, his muscle strength, and flexibility. His parents were asked to complete additional questionnaires such as the ASQ-3 for developmental milestones, the CARS-2, a child autism rating scale, and other assessments.
When I met with Jimmy and his family a second time, I noticed that his parents had more questions about autism. As they completed the questionnaires, they noted that little Amy was able to do so much more than Jimmy did at her age. They had looked at the Autism Speaks website as well as Autism Society of America online. His parents told me that they were seeing things about Jimmy that they had not noticed before. They realized that he met many of the autism criteria.
What happened to Jimmy? He was referred to Speech Therapy, Occupational Therapy, and had an intake evaluation with an Applied Behavior Analysis (ABA) agency. Eventually he started in-home ABA for four hours per day. The primary goals were for Jimmy to look at his parents in order to ask for something, to play interactively with them with a ball, and to allow for changes in his daily schedule. He heard “first this, then that” to help him wait instead of his previous stomping and screaming.
What happened to Jimmy’s parents? They were relieved to have a new way to think about Jimmy and his speech delays as part of a bigger picture. His parents learned specific tools to help make his mornings, meals, and bedtimes go better. They met some other parents at the therapy venues and shared stories on social media. They gained confidence that Jimmy would be improving over time.
Some people ask me if I feel sad when I tell parents that their toddler meets the criteria for Autism Spectrum Disorder. I feel compassion as well as privilege because I am bringing new insight and knowledge to parents so they can move from frustration to coping with their child. I hope to bring them back a sense of joy and delight in their child’s strengths and unique abilities.
Annelise Spees, M.D., is a Developmental-Behavioral pediatrician and a member of the Physicians Resource Council of Focus on the Family.
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