There are two ‘domains’ of Autism Spectrum Disorder (ASD), including
- Deficits in social communication and social interaction, and
- Repetitive behaviors and interests
The American Psychiatric Association (APA) releases medical guidelines for mental disorders, titled Diagnostic and Statistical Manual of Mental Disorders (DSM). In 2013, it released its fifth edition [1]. This manual is used by doctors and researchers as a guideline to diagnose and classify mental disorders, including Autism.
The first criterion is:
Persistent deficits in social communication and social interaction across multiple contexts…
The first key word is that the deficit is persistent, meaning that it does not come and go but is present throughout the day and throughout the child’s life. In other words, redirecting the child to be more “social” and interactive may result in brief improvement but the undesired behavior inevitably returns.
The other key words are multiple contexts, meaning that the child’s deficits in social communication happen everywhere. If you’re anything like me, you don’t usually go out of your way to talk with strangers, but you can talk with friends and family just fine. However, people with Autism don’t interact with strangers or family members in the same way that you and I may interact. They don’t see a need to be “social agents” – if they interact with other people, it may simply be to get something that they want. It’s aching to say, but children with Autism may not consider people to be… people, they may consider them to be more like objects that they can interact with.
The second criterion is:
Restricted, repetitive patterns of behavior, interests, or activities…
Children with Autism want/need things to be a very specific way. One common observation parents make is that their child may line up toys all in a row. If the line is not perfectly straight, the child will work on making it perfect. Over and over again. They can be preoccupied with the same objects for hours. Should the line be broken on accident, the child may throw a temper tantrum. Some families have described these temper tantrums as the child banging their head against a wall or the floor, and falling onto their back, causing themselves severe harm, to name a few examples.
Summary of the other criteria: These symptoms are present at a young age, and they are not explained by intellectual disability.
How do I know if my child meets the diagnosis of Autism?
As part of your child’s well-child checks, the AAP recommends screening for Autism at 18 and 24 months of age [2] using the CHAT questionnaires (ie., CHAT, q-CHAT, m-CHAT), in addition to developmental screening at 9, 18, and 24 months. Ask your doctor to evaluate your child for Autism. The process will likely include a referral to a sub-specialist (for example, a Psychiatrist, Neurologist, or Developmental/Behavior specialist).
What can I do if my child is diagnosed with Autism?
1. Continue to love your child
Having a child affected by Autism can cause a strain on the family in terms of the time commitment involved in providing them with the medical services they need, and in terms of how much more difficult child-rearing can be in general. Some parents feel frustrated and disempowered when they believe they cannot help their child, much less build a relationship with them. It can be very disheartening to see your child throw seemingly uncontrollable temper tantrums after a slight change was made to their schedule or their environment.
But there is hope.
After receiving medical care, the improvement is gradual, and the child may not even realize when the symptoms of Autism begin to diminish. The great effort in part of the parents, family and friends, schools and teachers, healthcare providers, and most importantly the child should be celebrated.
2. Be your child’s biggest advocate.
The diagnosis of Autism is a medical diagnosis, which means that your child deserves the medical care that he or she needs. If your child meets the diagnosis of Autism, it will be documented in his or her medical record. The medical record is a legal document that can be presented to institutions (such as schools) that require it to provide your child with the care he or she deserves. The American Academy of Pediatrics also recommends considering other screening in children diagnosed with Autism, such as an Audiology evaluation, and genetic testing [3]. It is important to have this discussion with your child’s doctor.
So what is the medical care that children with Autism need?
3. Partner with your child’s doctor to enroll your child in therapies:
- Applied Behavior Analysis (ABA)
This therapy will enhance your child’s “helpful” behaviors, and minimize the behaviors that are harmful and prevent learning. The repetitive behaviors that children with Autism have do not allow them to spend time on things like learning – learning how to interact with others, learning how to clap, learning how to smile, etc. Such repetitive and harmful behaviors are minimized with ABA therapy.
- Speech Therapy (ST)
While the most obvious reason for having speech therapy is to improve speaking, the overall goal that speech therapists can work with children to meet is helping them develop their entire language, whether verbal or non-verbal (spoken word or unspoken), expressive or receptive (them communicating with others, or others communicating with them).
- Occupational therapy (OT)
One of the goals of occupational therapy is to help your child learn how to do things in everyday life – tie a shoe, brush their teeth, hold a spoon or fork, etc. Now that he or she is spending less time doing things that are not helpful (for example, spinning the wheels of a toy car for an hour) through the help of ABA therapy, they can spend more time learning and eventually mastering skills that are helpful.
- Physical Therapy (PT)
Your child will learn how to do many different things through the above therapies. As they begin to learn new skills, it will be important for them to have the strength required to be physically able to actually do them. Working on strengthening the muscles of the hand can help your child actually be able to hold a toothbrush to brush his or her teeth, to name an example. Or, if your child previously only enjoyed sitting down as a repetitive behavior, they can work on strengthening the muscles of the legs and back that have become weak over time.
4. Partner with your child’s school to create an Individualized Education Plan (IEP)
You child deserves to receive an education, even when he or she is affected by Autism. He or she may need to learn things at a different pace, in a different setting, and by different means. An IEP is a written statement of how the educational institution will meet your child’s individual education needs and goals. This can include setting time aside for individualized learning with certain educational staff, as well as setting time aside from the regular school day to participate in some of the therapies listed above (ST, OT, PT) if the therapists have a working arrangement with your child’s school.
5. Obtain a communication assistive device
Depending on the level of support that your child requires in order to communicate effectively, he or she may need an Augmentative & Alternative Communication (AAC) device. Some of my patients with Autism who require such a device also have a strong interest in tablets and technology. In order for us as parents or medical caregivers to take advantage of this interest, there have been apps developed to allow children to type words on their screens that can be displayed, announced through the speakers, or a combination of both.
The best communication assistance device for your child should be the one you and your child feel most comfortable using, and the one that he or she can use to communicate most effectively with. With continued support and participation in therapies, children with Autism may eventually surpass the need for using such devices to communicate.
6. Continue exposing your child to other children
One of the ways that children learn is through imitation – they imitate parents, they imitate things that they see, they imitate things that they hear, and they imitate each other. Children clap, children laugh, children run, and they have imaginative play. If your child does not have those experiences with other children (even if their symptoms of Autism limit them), they will miss out on a big part of growing and learning. Don’t deprive your child of spending time with other children.
The time when exposure to other children should be limited is if they pose a danger to others, specifically through violent temper tantrums.
Other considerations
A note to families: Autism Spectrum Disorder is just that, a spectrum. The symptoms of Autism can range from very mild to severe, and children diagnosed with Autism by their doctor will receive a “level” that indicates how much support the child is expected to require in order to thrive. At the end of the day, your child is not an Autistic child, but rather your child who is affected by Autism. Autism cannot be “cured” but symptoms can improve with early diagnosis and treatment [4].
A note to Pediatricians: If a child presents with the above symptoms, feel empowered to begin the work-up and make the referrals in order to make the diagnosis of Autism Spectrum Disorder. The AAP, and the APA both recommend regular screening for Autism so that the diagnosis can be made as early as possible in order for the child to begin participating in therapies [4-6].
For your reference:
1. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Arlington, VA: American Psychiatric Association, 2013. Print.
2. Zwaigenbaum L, et al. Early Screening of Autism Spectrum Disorder: Recommendations for Practice and Research. Pediatrics, October 2015, 136 (Supplement 1) S41-S59
3. Caring for Children With Autism Spectrum Disorder: A Practical Resource Toolkit for Clinicians. 3rd ed., American Academy of Pediatrics, 2019.
4. What Is Autism Spectrum Disorder?, edited by Nathan J. Copeland, American Psychiatric Association, Aug. 2018, www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder.
5. Lipkin, Paul H., and Michelle M. Macias. “Promoting Optimal Development: Identifying Infants and Young Children With Developmental Disorders Through Developmental Surveillance and Screening.” Pediatrics, Dec. 2019.
6. Hyman, Susan L., and Susan E. Levy. “Autism: AAP guidance includes updates, searchable topics, executive summary.” Editorial. AAP News, Dec. 2019.