I Think My Child Might Have Autism

Maybe a child isn’t talking yet or doesn’t seem to respond to your voice. Or perhaps a toddler is lining up toys and having a hard time interacting with peers. These could be signs of autism—but then again they could be signs of a different developmental disorder or even minor developmental delays.

If you are concerned, however, it can’t possibly hurt to take action. If a child is diagnosed with autism, you’ll be able to start in right away with therapies and supports. If everything’s fine, you’ll be reassured and able to relax with the child. And if you’ve uncovered a different disorder, it’s always best to start treatments earlier rather than later.

First Step: Autism Screening

In an ideal world, a child’s pediatrician should be screening every child for developmental disorders. Children born preterm or with autism in the family should be checked at every visit.

Even without any risk factors, the American Academy of Pediatrics (AAP) recommends monitoring or screening children for autism spectrum disorder at well-child visits at:

• 9 months—general developmental screening
• 18 months—autism-specific screening
• 24 months—autism-specific screening
• 30 months—general developmental screening

Unfortunately, we don’t live in an ideal world. A 2020 study found that only about 73% of pediatricians claim to follow the AAP’s recommendations. As a result, a pediatrician may have missed signs of autism, which can in many cases be surprisingly subtle.

If you have concerns about a child, therefore, your first step should be a visit to the pediatrician for a developmental screening. The screening should include a brief test of a child, along with a parent or guardian questionnaire about the child’s development in the areas of language, movement, thinking, behavior, and emotions.

Developmental screening should be completed by a professional and will probably involve one or more of these screening tools:

• Modified Checklist for Autism in Toddlers, or M-CHAT
• Childhood Autism Rating Scale
• Ages and Stages Questionnaire
• Screening Tool for Autism in Toddlers and Young Children, or STAT

If the results of developmental screening suggest further testing, they will recommend you take the next step: a developmental evaluation.

What If I Disagree With the Pediatrician?

Most of the time, guardians and pediatricians are on the same page. But pediatricians see hundreds of children, and they’ve seen a similar number of worried parents.

Minor developmental delays often resolve themselves, and some pediatricians are reluctant to raise the alarm until there’s a major concern to address. If that describes a pediatrician, and you’re still concerned about your child’s development, you are absolutely within your rights to seek other opinions.

Parents or guardians see their children every day, while pediatricians may see a child only a few times a year. As a result, parents or guardians may be aware of issues that aren’t apparent in the doctor’s office.

Second Step: Developmental Evaluation

A screening will let you know whether a child has any “red flags” for autism or other developmental disorders. An evaluation will tell you for sure whether a child has autism or another developmental disorder.

A child’s developmental evaluation may take place in a doctor’s office, an autism clinic, or a children’s hospital. It should be conducted by a specialist or team of specialists. Some of the titles you should look for include:

• Developmental neurologist
• Developmental pediatrician
• Speech pathologist
• Occupational therapist
• Pediatric psychologist or psychiatrist

Preparing for a Developmental Evaluation

Although it’s a child who’s being evaluated, you’ll need to prepare because most of the questionnaires will require information that only you can provide. Be sure you have:

• Medical histories of the child and thechild’s immediate family
• Information about risk factors for developmental issues including premature birth, exposure to lead or other pollutants, or medications or illness during gestation
• The child’s developmental history including milestones (babbling, first words, rolling over, crawling, walking, etc.)
• Behavioral history (social behaviors; speech and language; play routines; special interests; unusual responses to sounds, lights, etc.; unusual behavioral patterns such as rocking, repetitive actions, apparently purposeless behaviors, etc.)

It’s also a good idea to pack snacks for both you and the child in your care, along with toys or activities that the child finds comforting.

What to Expect at the Evaluation

Evaluators and evaluations vary, but you should expect at least some of these tests and questionnaires:

• Autism Diagnostic Observation Schedule (ADOS-2)
• Autism Diagnostic Interview, Revised (ADI-R) 
• Communication and Symbolic Behavior Scales (CSBS)

A practitioner will also conduct interviews with you and the child, and may assess the child’s cognitive development and behavior. In addition, your team may conduct tests of the child’s speech and physical abilities.

Third: Receiving Results

Once the evaluation is completed, you will almost certainly have to wait for results. The results may include an autism spectrum diagnosis, but research suggests that it can be very hard to distinguish autism from other developmental disorders—particularly in children who are high functioning (need a lesser degree of support).

Often you’ll be asked to come in to meet with the team to discuss the results. If not, it’s a good idea to request a meeting so you can ask questions.

What to Expect at a Post-Evaluation Meeting

Of course, you can expect to hear whether or not the child in your care has autism. If they are diagnosed with autism, you should also expect to hear the level of autism (level 1 is least severe, while level 3 is most severe), but be aware that levels often change as children mature.

Finally, if a child is diagnosed with autism, you may learn that they have autism with specific features such as intellectual disability, speech and language disorders, or sensory issues.

If a child does not have autism, you may learn that they are diagnosed with a different developmental disorder with overlapping features. Here are just a few:

• Attention deficit hyperactivity disorder (ADHD) can look similar to autism in some children.
• A child with late speech or speech difficulties may be hard of hearing or have apraxia of speech (difficulty forming desired words).
• Some children have sensory dysfunction without autism, so they may react badly to light or sound because their sensory system is easily overwhelmed.
• In some cases, social anxiety can look like autism—but it is a different disorder and is treated differently.

In addition to a diagnosis, a practitioner may also give you an idea of what to do with the information they’ve provided. They may recommend particular treatments, and they may suggest coming back for follow-up visits.

What Not to Expect at a Post-Evaluation Meeting

You might reasonably expect an evaluation team to give you straightforward, concrete advice about where to go, what to do, and what to expect if the child in your care has autism. This, however, is rarely the case.

Evaluators specialize in evaluation, not in treatment, education, or guardian support. Thus, you are likely to hear generic advice such as, “Be sure the child receives special education services, and look into applied behavioral analysis as a treatment.” While this advice isn’t wrong, it isn’t as helpful as it might be.

Taking the Next Steps

While an autism diagnosis can be overwhelming, it’s very important to remember that autism is not physically dangerous to a child, nor will it get worse over time. In addition, there’s an excellent chance that a child will live a happy and productive life—especially with patience, support, therapies, and a loving family.

Start by giving the child a hug and remembering that nothing has changed. They are still the wonderful person they’ve always been.

Next:

• Call the local school district. Ask about early intervention programs, and while you’re on the phone, ask for information about your local disability and/or autism support groups. Get contact information and details about support group meetings.
• Get started with early intervention, a variety of services including (but not limited to) speech, play, and occupational therapies. In many cases, early intervention also includes therapeutic preschool programs, Extended School Year, and more. You may also get access to cognitive therapy for yourself and a partner (if you have one) as you adjust to your new reality.
• Reach out to other local parents or guardians of children with disabilities. You’ll find that they’re a varied group, and no one will be precisely in your shoes. But many will have valuable information to share about programs, therapists, teachers, parent groups, social groups, events, programs, and more.
• Read up on autism. Learn about the wide range of therapies and educational programs available. Take your time; there is no point in rushing into a program that isn’t right for a child or costs more than you can afford.
• Breathe. Give yourself and your partner (if you have one) time to reflect, talk, and relax. If you have other children, be sure you make time to spend with them as well.

Summary

If you think a child may have autism, the first step is developmental screening by a professional. The next step is a developmental evaluation if the child has any red flags for a developmental disorder.

After the evaluation, you may receive an autism diagnosis or need further testing to distinguish between autism and other disorders with overlapping symptoms. If the child is diagnosed with autism, you can then begin early intervention and seek more information and support.