What Is Autism? How To Move From Concern To Action

Autism (or Autism Spectrum Disorder) is a developmental disability. Children with autism experience challenges in 3 areas: communication skills, social interaction skills, and restrictive/repetitive behavior. There is a wide range of abilities within individuals with autism. Some children need more support and some need less support in different areas of development. For example, some children may be non-verbal, while other children are talking, but not using their language to communicate socially. Some children may have a cognitive disability, while others have advanced skills in the cognitive area. People say, “when you know one person with autism, you know one person with autism”. This is so true! Every autistic child has a unique combination of characteristics, strengths, and challenges.

According to estimates in 2020, the prevalence of autism in the United States is 1 in 54 children. Autism occurs in all racial, ethnic, and socioeconomic groups and occurs 4x more in boys.

How Is Autism Diagnosed?

There is not a medical test to diagnose autism. It is diagnosed through a combination of analyzing the child’s developmental history, standardized tests in different areas of development, checklists and observations. There is also a difference between a medical diagnosis of autism, which is typically made by a doctor, psychologist, or neuropsychologist and an educational label of autism. Both labels (medical and educational) follow mostly similar criteria based on the DSM-5 criteria. DSM stands for the “Diagnostic and Statistical Manual of Mental Disorders”. A medical diagnosis of autism, doesn’t mean a child automatically qualifies for special education services in the public schools under IDEA (Individuals with Disabilities Education Act). They need to both meet the criteria AND demonstrate an educational need. In the school setting, educational eligibility is determined by a team of professionals and the student’s parents. To be eligible, the student must meet criteria for one of the 13 specified disability areas and be in need of special services. Autism is one of those categories and the exact definition may vary slightly from state to state.

According to the DSM-5, the following criteria must be met for the diagnosis of autism:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive):

Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take the same route or eat the same food every day).
Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

C. Symptoms must be present in the early developmental period (but may not become fully manifested until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual development disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

What Are The Signs Of Autism?

It’s one thing to read the criteria from the DSM-5, but it’s another thing to recognize what these characteristics look like in young children with autism. The following are some of the developmental differences found in toddlers and young children with autism:

Social Differences in Children with Autism

Avoidance of eye contact or fleeting eye contact
Doesn’t respond to a parent’s smile or other facial expressions
Doesn’t look at objects or events a parent is looking at or pointing to
Doesn’t point to objects or events to get a parent to look at them
Doesn’t bring objects of personal interest to show to a parent
Difficulty with using facial expressions
Difficulty understanding other people’s feelings
Unable to make friends or is uninterested in making friends

Communication Differences in Children with Autism

Little or no babbling
Little or no back-and-forth gestures such as pointing, showing, reaching or waving
Loss of previously acquired speech, babbling or social skills
Doesn’t respond to name
Doesn’t point at things to show needs or share things with others
Doesn’t say single words by 16 months of age
Repeats exactly what others say without understanding the meaning (often called echolalia)
Doesn’t respond to name being called but does respond to other sounds (like a car horn or a cat’s meow)
Delayed language development
Refers to self as “you” and others as “I,” and may mix up pronouns
Doesn’t use toys or other objects to represent people or real life in pretend play
May have a good rote memory, especially for numbers, letters, songs, TV jingles, or a specific topic

Behavioral Differences (Repetitive & Obsessive Behaviors) in Children with Autism

Rocks, spins, sways, twirls fingers, walks on toes for a long time, or flaps hands (called “stereotypic behavior”)
Likes routines, order, and rituals; has difficulty with change or transition from one activity to another
Resistance to minor changes in routine or surroundings
Obsessed with a few or unusual activities, doing them repeatedly during the day
Plays with parts of toys instead of the whole toy (e.g., spinning the wheels of a toy truck)
Doesn’t seem to feel pain
Unusual and intense reactions to sounds, smells, tastes, textures, lights and/or colors
Unusual use of vision or gaze—looks at objects from unusual angles

What If My Child Is Showing Signs Of Autism?

If your child is displaying a number of these characteristic, and you have concerns, one thing that you can do to help you determine if a professional should evaluate your child is take the simple online screening called the M-CHAT (Modified Checklist for Autism in Toddlers ™). This checklist only takes a few minutes and can help you determine if a professional should evaluate your child. If the results suggest your child has a moderate or high probability for autism, please consult with your child’s doctor. Likewise, if you have any other concerns about your child’s development, don’t wait. Talk to your doctor now about screening your child for autism.

What Causes Autism?

This is the million-dollar question. There has not been a specific gene identified that causes autism. Research suggests that autism develops from a combination of genetic and nongenetic, or environmental, influences. These influences appear to increase the risk that a child will develop autism. However, it’s important to keep in mind that increased risk is not the same as cause. For example, some gene changes associated with autism can also be found in people who don’t have the disorder. Similarly, not everyone exposed to an environmental risk factor for autism will develop the disorder.

Research also shows that certain environmental influences may further increase – or reduce – autism risk in people who are genetically predisposed to the disorder. Importantly, the increase or decrease in risk appears to be small for any one of these risk factors:

Advanced parent age (either parent)
Pregnancy and birth complications (e.g. extreme prematurity [before 26 weeks], low birth weight, multiple pregnancies [twin, triplet, etc.])
Pregnancies spaced less than one year apart

The topic of vaccines possibly causing autism has been researched and a connection between the two has not been established. The American Academy of Pediatrics has compiled a comprehensive list of this research and has stated that vaccines do not cause autism. Even so, this has been and continues to be a very controversial topic in the field of autism.

Take Action

My best advice is that if you notice any of these “red flags” for autism, or if you have a “gut-feeling” that your child is having delays or differences in their development, reach out to your doctor. If you feel that the doctor isn’t hearing what you are saying, reach out to a local speech/language pathologist, your local Birth to Three program, or the early childhood program in your school district. Parents know their children best! If you have concerns, they are probably warranted and worth checking out further.