Autism: What the Current Research Tells Us

What causes autism? Why are rates increasing? How do you know if your child is autistic? And what can you do as a parent?

This newsletter is a collaboration of Parenting Translator and Learn with Dr. Emily. Parenting Translator is a weekly newsletter that translates recent scientific research into information that is accurate, reliable, and useful for parents. It is written by Dr. Cara Goodwin, a child psychologist, children’s book author, and mother to three children. You can subscribe to Parenting Translator here. Learn with Dr. Emily is a newsletter about child development, mental health, parenting, education, and how we all must work together to create a better world for our neurodivergent kid written by child psychologist and former school psychologist, Dr. Emily King.

Source: Pexels/Tara Winstead

April is World Autism Month, a month designated to enhance understanding of autism and increase acceptance of autistic individuals.  Today’s newsletter will help to provide answers for the following questions: 

• What is autism? 

• Why are rates of autism increasing? 

• What causes autism?

• How do you know if your child is autistic? 

• What to do as a parent?

You can also listen to the newsletter through the link below:

What Is Autism?

Autism is a neurobiological difference that is characterized by social and communication challenges along with repetitive behaviors, sensory differences, and strong interests. Autism is believed to occur on a spectrum because autistic children can have very different characteristics, abilities, and areas of need.  Autism advocate Stephen Shore famously said “If you’ve met one person with autism… you’ve met one person with autism” meaning that every autistic person is different and you can’t generalize from one person to another. 

A quick note about language: The adult autism community has reported that they prefer the identity-first language (“autistic individual”) versus person-first language (“individual with autism”) so identity-first language will be used in this newsletter. 

Why Are the Rates of Autism Increasing?

The CDC reported last month that the rate of autism in the United States is now 1 in 36 children. The rates of autism have been dramatically increasing since the CDC began monitoring autism prevalence in 1996. In 2000, it was 1 in 150 children. In 2008, it was 1 in 88 children. In 2018, it was 1 in 44.

The rate of autism across the world also seems to be increasing. In 2012, autism prevalence around the world was estimated to be 6 in 1,000. The most recent study estimated global prevalence to be around 1 in 100.

So why are the rates of autism increasing? 

1. Greater awareness: The primary reason that the rates of autism have increased include greater awareness of autism. More parents are aware of autism so they are more likely to seek evaluations for their children and more professionals have been educated on autism, making them more likely to refer children and make diagnoses. Autism screening has also become more common. For example, in the United States, children are typically screened for autism at 18 and 24 months regardless of whether they are showing symptoms. Research finds that the increases in autism diagnoses have been associated with decreases in diagnoses of intellectual disability and learning disability, suggesting that children who used to be diagnosed with an intellectual disability or learning disability are now diagnosed with autism. 

2. Changing diagnostic criteria: The diagnostic criteria for autism has changed over the years becoming broader and including more mild presentations of autism. 

3. Increased availability of services: Over the years, services for autism have become more readily available. The availability of services has encouraged more people to seek a diagnosis in order to gain access to these services.

4. Increase in parent age: Across the world, people are waiting longer and longer to become parents. For example, the average age for a first birth was 21 in 1970 but it rose to 27 in 2021 in the United States (source: CDC).  Increased parental age (both maternal and paternal age) has been associated with an increased likelihood of autism. Yet, research estimates that this accounts for less than 3% of the rise in autism prevalence so while this may play a role it does not completely explain the increase. 

5. More premature babies: Advances in neonatal medicine have allowed more extremely premature infants (born before 28 weeks) to survive. These advances are so incredibly important but they may be related to increasing autism rates since premature and low birthweight babies have higher rates of autism. In addition, the rates of prematurity (babies born before 37 weeks) seems to be increasing in some countries such as the United States. According to the March of Dimes, the prematurity rate rose by 4% in the United States from 2020 to 2021 and is now at the highest rate since the US began tracking this data in 2007. The preterm birth rate also grew gradually in the 1990’s and 2000’s in the United States. 

What Causes Autism?

There is no one cause of autism. For most individuals, autism is caused by a combination of genetic and environmental factors. Researchers estimate that autism is highly genetic (81%) and over 100 genes have been identified as being associated with autism.  Although a brain scan or a genetic test cannot yet be used to identify autism, autism is associated with neurobiological differences that can be found as early as while the infant is still in the womb. This research suggests that there is nothing that parents do or do not do that causes autism. 

Environmental factors related to autism are still not well-understood. There are several environmental factors that have been linked to autism (such as auto-immune disorders in the mother, serotonin reuptake inhibitors during pregnancy, and environmental pollution) yet we do not have evidence that any of these factors cause autism, only that they are associated with increased prevalence. 

It is very important to mention that research consistently finds absolutely no link between childhood vaccines and autism. Despite news headlines, we also do not have evidence that screen time in early childhood or Tylenol use during pregnancy causes autism. Although both of these environmental factors have been linked to autism, we have no evidence of cause and there are many other factors that may explain this relationship. 

How Do I Know If My Child is Autistic?

Every child is different and some children may show many clear signs of autism from infancy, while other children may show very subtle signs of autism that do not emerge until preschool or even school age. If you have any concerns about your child’s development at any point, you should not hesitate to talk to your pediatrician or seek out an evaluation. 

Some early signs of autism are as follows: 

• Avoidance of eye contact or limited eye contact (infants began making eye contact and using eye contact to communicate around 6 months)

• Limited “social smiles” (not smiling in response to others smiling– a skill which should develop around 2 to 3 months)

• Limited facial expressions (meaning it is hard to tell when they are happy, sad, angry, etc. by looking at their face)

• Consistently preferring to be alone 

• Loss of skills they once had (such as no longer saying words they used to say)

• Difficulty understanding the emotions of others (this is dependent on age since children develop this skill gradually over the first five years– with younger children it may be simply not noticing when others are upset which should develop by 24 months and with older children it may involve not understanding a perspective different than theirs which should develop by age 4) 

• Repeating words or phrases from TV shows or other people over and over again (this is called “echolalia”)

• Resisting or having difficulty with minor changes in their routine or environment (all toddlers have difficulty with this so look for responses that seem particularly intense)

• Repetitive or stimming behaviors (such as flapping their arms, rocking, or spinning)

• Having very strong interests that may not be typical for their age (such as ceiling fans or vacuums)

• Lining up toys or playing with toys in the same way every time

• Intense responses to sounds, smells, tastes, textures and lights or colors

It is important to remember that just because you see one of these early signs of autism it does not mean your child is autistic, but it is important to reach out to a qualified professional such as your pediatrician to discuss your concerns. The “wait and see” approach may not always be the best choice since research shows that early intervention can really help autistic children make gains in communication and emotional regulation, which will later help them access the world around them.

A screening measure for autism, the Modified Checklist for Autism in Toddlers, Revised, (M-CHAT-R) is available here. This questionnaire can be used for toddlers from 16 to 30 months and the results will indicate whether a further evaluation might be needed. 

A diagnosis of autism can typically be made as early as 12 months (although it can be difficult to provide a reliable diagnosis before 24 months), but it is never “too late” to seek an autism evaluation. Autism is usually diagnosed by a child psychologist or developmental pediatrician by simply observing your child’s behaviors and asking you about their development. Sometimes, a psychologist will administer the Autism Diagnostic Observation Schedule (ADOS-2) to gain more insight into your child’s skills. The evaluation will just look like they are playing with your child and talking to them and talking to you. There are no blood tests or brain scans to diagnose autism.  

What Parents Can Do?

If you are concerned that your child may meet criteria for autism, contact your pediatrician or early intervention services as soon as possible. Create a list of your concerns with specific examples to share with them. Remember that you can always seek a second opinion if you do not agree with their conclusions. 

It is also very important for parents to know that certain medical conditions can be associated with autism so it may help to consult with your pediatrician or another medical professional if you are concerned about a diagnosis of autism. For example, research finds that 11% of autistic individuals may also have epilepsy (translation: a neurological condition that causes recurring seizures). Research also estimates that up to 91% of autistic individuals may have gastrointestinal problems (such as constipation, diarrhea, and abdominal pain).

Although you should seek help from professionals who specialize in working with autistic children if you are at all concerned about your child’s development, there are also ways that parents can help to advance their child’s communication and social skills.  This may be helpful if your child does not meet criteria for services but you still think they need some support or if you have to wait for an evaluation or services (unfortunately waiting lists for evaluation and early intervention are all too common). Here are a few ways you can help to advance your child’s development as a parent:

Communication:

1. Incorporate more language into everyday routines: Working on language with your child doesn’t have to be a special activity that takes time out of your busy day. Simply, work more language into your daily routine. For example, sing songs during bath time or use diaper changes to interact with your child. 

2. Narrate and label everything: As you go through the day, narrate what you or your child is doing like a sportscaster. Label anything your child notices, such as describing everything you see on a walk. The more language, the better! Follow their lead on what they are interested in rather than requiring them to shift their attention to what you notice.

3. Have back-and-forth conversations: Try to have back-and-forth conversations with your child throughout the day. If they cannot speak in words yet, respond to their gestures, babbling, or sounds as if it were language. This video is a great example of a conversation with a child who does not yet have many words. 

4. Imitate what your child says and expand on it: Imitate your child’s speech by echoing it back to them (even if it is just babbling or noises). Then, expand upon their communication to help them learn more complex speech. For example, if they say “ba” and you know they are referring to the “ball” say “Ball! You want the ball.” Imitation encourages children to communicate more often and expanding upon it helps them to learn the “next step” for more advanced communication. 

5. Give your child more opportunities to communicate: Create opportunities for your child to practice communicating. Sometimes, as parents, we know our children so well that we meet our children’s needs before they even communicate them. However this does not give children opportunities to practice communicating, and as we all know, practice is essential to improving any skill. So rather than meeting your child’s needs before they ask, wait for them to communicate first. For example, wait for them to ask for their favorite breakfast even if they eat the same thing every day, give them a toy or snack in a container that they can’t open and wait for them to ask you for help, wait for them to say or gesture for “up” before putting them in the swing at the playground, or pause during their favorite song to see if they finish it or request you to keep going. 

Social Skills:

1. Face to face interaction (get in their “spotlight”): Imagine your child’s attention is like a spotlight and try to stay in their spotlight. Get down on their level and pay attention to what they are paying attention to. To encourage eye contact, hold toys or favorite snacks near your eyes but do not force eye contact to the point of distressing your child. 

2. Learn through play: Play is the primary way that children learn any new skills, particularly social skills and emotional regulation. Teach children new social concepts through play, such as turn-taking, compromising, and playing cooperatively with another person. You can act out different scenarios that they might experience with other children their age. Children learn best through play and face-to-face interactions with caregivers. Turn off screens whenever possible (since children learn better from people than even the most educational show or app). 

3. Insert yourself into their interests: Some children are not as motivated to engage in social interaction and therefore they may not learn social skills to the same extent as a child who is more interested. In order to increase your child’s interest, make social interaction more positive for them by integrating social opportunities into the interests they already have. To do this, follow their lead in play and engage in their interests with them. 

4. Find the smile: Make social interactions more enjoyable for children by “finding the smile” when interacting with children. For some children, this may mean quietly singing their favorite song and cuddling with them gently and for some children this may mean swinging them around wildly while you both scream. It may involve making silly noises, playing “tickle monster,” blowing raspberries on your child’s belly, playing chase, or bouncing them on your knees— whatever it takes to make your child smile (and keep smiling). 

Autism Acceptance/Neurodiversity Awareness

It is important to clarify that there is nothing “wrong” with the brains of autistic individuals. Their brains simply work in a different way rather than an inferior way. As parents and professionals, we are not trying to change the autism. Rather, we are trying to support the development of particular skills that may help them to succeed in a world that wasn’t built for them. Many autism advocates argue that our society should adapt to be more accepting of autism rather than autistic individuals having to change themselves to fit into a society designed for neurotypical brains. This idea that we work towards accepting that humans have brains that work in a variety of ways is referred to as “neurodiversity.”

Research shows that, when autistic adults feel accepted, they are less likely to experience stress or depression. Feeling a need to hide their autistic traits to fit in has been associated with anxiety, stress, and even suicidality in autistic adults. Autistic adults also report that trying to fit into a world that does not accept them is physically and mentally exhausting.

How can you increase your knowledge and acceptance of autism? 

1. Learn about autism and understand first-hand experiences of autistic people. A recent study found that informing neurotypical adults about autism and hearing the perspectives of autistic people increased interest in social interaction with autistic adults and improved first impressions of autistic adults.

2. Learn about the many strengths associated with autism.  Autism is associated with many strengths which may include focus and attention to detail, strong long-term memory skills, creative problem-solving abilities, and enhanced visual and auditory processing. 

3. Educate others when you have an opportunity. For example, if your child sees someone flapping their arms or wearing headphones to block out loud noises, explain that they may experience the world in a different way.

4. Seek out books that celebrate neurodiversity, such as Some Brains: A Book Celebrating Neurodiversity, A Friend for Henry, and All My Stripes. A great book for toddlers and preschoolers that is available for free through the Kindle app is We’re Amazing, 1,2,3!

5. Ask the individual (or their family member if they are non-speaking) what kind of language they would prefer to refer to their autism. Some individuals prefer “person first” language (“a person with autism”) and some prefer “identity first language” (“an autistic person”). 

6. Seek out additional resources to educate yourself about autism. Sesame Street created a free initiative to inform parents about autism, which increases knowledge and acceptance of autistic individuals. The Autistic Self Advocacy Network (ASAN) also provides information on their website that explains the autistic experience.  Autism Level Up is another great resource created by an autistic adult to increase autism awareness and acceptance.

DISCLAIMER: The information and advice in this newsletter is for educational purposes only and is not intended or implied to be a substitute for professional medical, mental health, legal, or other professions. Call your medical, mental health professional, or 911 for all emergencies. Dr. Cara Goodwin is not liable for any advice or information provided in this newsletter.