First Steps After Receiving an Autism Diagnosis
by Caitlin McIlwee, M.A., Psychological Services Pre-Doctoral Intern
You have just learned that your child has been diagnosed with autism spectrum disorder. For some parents, the news comes as a shock, while other parents may have been expecting it. However, almost all parents who receive this diagnosis for their child struggle with reimagining their child’s future with this pervasive developmental disability. You are not alone, and it is normal to feel this way. The important thing to know is that, although there is no known “cure” for autism, there is hope. Your child will be able to learn, grow and gain new skills within their potential. The important first steps are educating yourself about the diagnosis, adjusting the child’s home environment to best meet their needs, and seeking professional therapeutic services.
What is autism spectrum disorder?
Autism spectrum disorder is a neurodevelopmental disorder typically diagnosed in children with difficulties in communication, social interactions, and repetitive and restricted interests or behaviors (1). “But what happened to Asperger’s and pervasive developmental disorder?” you might ask. A new diagnostic manual was released in 2013 that changed the way these disorders are diagnosed. The disorders that were previously known as autism, Asperger’s syndrome, and pervasive developmental disorder—not otherwise specified (PDD-NOS) were combined to create the diagnosis of autism spectrum disorder. They now all fit under the broad diagnostic umbrella of “autism.” However, despite the recent diagnostic changes, each family should feel comfortable using the terminology that they prefer, as they may have come to identify with the specific traits of that disorder, such as Asperger’s, or have joined relevant organizations.
As the name suggests, children with this diagnosis fall along a “spectrum” of symptoms that can vary from children who are fairly verbal and described as “high functioning” to those who have no language abilities and are described as “lower functioning.” Your child’s symptoms and abilities will fit into one of three diagnostic levels to indicate the severity and where they fall on the spectrum:
Level 1: This level requires “support” and is the least impairing level of symptom severity. These children are considered “higher functioning.” This means they typically do not have significant impairments to their verbal or cognitive abilities. Children previously diagnosed with Asperger’s or PDD-NOS would now fit within this category.
Level 2: This level requires “substantial support.” These children may have some verbal or cognitive deficits, and their social impairments are apparent even with supports in place.
Level 3: This level requires “very substantial support” and is the most impairing level of symptom severity (1). These children are considered “lower functioning.” This means they typically have significant impairments to their verbal and/or cognitive abilities, and they are unable to live independently as a result.
The symptom presentations vary greatly along the spectrum, and every child with autism is unique and different. For example:
- Children with autism tend to have difficulty in social situations, such as making eye contact, reading facial expressions, and having conversations (4).
- They may be rigid and have difficulty being flexible or accepting changes in routine.
- They may exhibit repetitive behavior, such as hand flapping or spinning.
- Many children with autism have intense interests, such as certain TV shows or characters.
- Some children with autism will repeat words or scripts, which is known as echolalia.
- They may have trouble with pretend play. For example, instead of pretending to make a toy car zoom across the table, they may repetitively spin the car’s wheel (1).
Autism occurs in about 1 in 88 children, and it is approximately five times more common in males than females (2). The cause of autism is still not yet completely understood, but it is believed to be a complex interaction of many factors such as genetics and environment (4,5). It is not the parents’ fault that their child has autism.
What can I do at home to help my child?
Children with autism tend to be more visual learners than verbal learners5. They will benefit from visual representations of language as a supplement to what you are saying verbally. The Picture Exchange Communication System (PECS) is one such system of symbols and pictures that is used to supplement language for children with autism (3). Consult with a professional, such as a speech or behavioral therapist, to see if PECS is a good tool for your child. Provide visuals for your child in other ways when possible, such as imitating an action that you want them to carry out or using a timer to show them how much time they have to do a certain activity.
Children with autism function better in more structured environments (5). They prefer to have their day be as predictable as possible. Increasing structure is often best done in a more visual manner, as explained earlier. There are steps you can take at home to make this possible:
- Have your child follow a visual schedule for the day with pictures and/or words of what they will be doing.
- Keep a visual list of the house rules.
- Give your child a visual warning before they must end an activity, such as holding up your fingers to show that there are five minutes left and then one minute left.
Reinforcement and Punishment
The most effective way to change a child’s behavior is often to adjust your own response to that behavior. Behaviors that you respond to with something rewarding, such as a piece of candy, praise, or a hug, are more likely to occur in the future. Behaviors that you respond to with a negative consequence, such as time out or taking away a preferred item, are less likely to occur in the future. All children, including those with autism, are more likely to learn and grow if you provide them motivation and reinforcement for appropriate behaviors (5):
- You can create a visual rewards system for your child. For example, they can receive a sticker for good behavior. After they earn a certain number of stickers, they can “trade” them in for a reward that they enjoy, such as a new toy or extra TV time.
- Give your child choices throughout the day to increase their sense of control and independence.
- Provide immediate verbal praise for your child when they do something good. Reward them for using their words appropriately, complying with your demands, and transitioning well between activities, for example.
- Some negative behaviors, such as whining or tantrums, may be to gain your attention or gain a preferred item. Such behaviors are best ignored, as long as the child is not in danger. Your child will learn that they must get your attention in more appropriate ways, and their disruptive behavior will not result in getting what they want.
Be Aware of Sensory Difficulties
Many children with autism struggle with sensory difficulties (5). Sensory difficulties means that their five senses may process information differently than the typical person. They can be hypersensitive (want to avoid strong stimuli, such as bright lights or loud noises) or hyposensitive (want to seek out strong stimuli, such as deep hugs or flashing lights). The more aware you are of your child’s specific sensory preferences, the more comfortable you can make them feel at home, such as by reducing noise or removing distracting items.
What services can I seek to help my child?
The earlier the intervention, the more gains your child can make as their brain continues to grow and mature (5). If your child has been formally evaluated, be sure to consider the recommendations put forth after the evaluation. Contact your child’s school to inform them of the diagnosis and begin the process of creating an Individualized Education Program (IEP). The IEP will mandate that the school provide certain services for your child depending on their needs, such as in-school speech and occupational therapy, or inclusion in a special education classroom.
When seeking services, be sure to consult with a professional first. Services that are often helpful for children with autism include, but are not limited to:
- Individualized Education Program (IEP)
- Speech therapy
- Occupational therapy
- Behavioral therapy
- Physical therapy
- Developmental therapy
- Social skills groups (6)
- Psychiatric services and medication management
Additionally, you may want to seek your own help and support, for example, through family therapy, respite services or a local parent support group.
The Integrated Pediatric Therapies program at JCFS Chicago offers developmental, occupational and speech therapy, in addition to social work services and developmental groups for children on the autism spectrum.
Meredith White, developmental therapist and coordinator of group services for Integrated Pediatric Therapies states, “We utilize a multi-disciplinary team approach to therapy, which includes therapists from each discipline meeting each week to collaborate regarding a child and family’s needs and goal plan. This approach is specifically profound for children with global deficits and autism in order to design a cohesive and comprehensive approach for interventions.”
JCFS Chicago offers a wide-range of therapeutic services to enhance the social and emotional well-being of adults, children and families in Chicago and its suburbs. To learn more about our comprehensive list of programs and services call 855.275.5237 or visit us online at jcfs.org.
Where can I learn more?
The following websites can provide you with more information about autism spectrum disorder:
“First 100 Days” packet for parents:
1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
2. Baio, J. (2012). Prevalence of autism spectrum disorders – Autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report, 61(3), 1-19. Retrieved from http://www.cdc.gov/mmwr/pdf/ss/ss6103.pdf
3. Flippin, M., Reszka, S., & Watson, L. R. (2010). Effectiveness of the Picture Exchange Communication System (PECS) on communication and speech for children with autism spectrum disorders: A meta-analysis. American Journal of Speech-Language Pathology, 19, 178-195.
4. Klinger, L. G., Dawson, G., & Renner, P. (2003). Autistic disorder. In E. J. Mash & R. A. Barkley (Eds.), Child psychopathology (2nd ed.). New York, NY: The Guilford Press.
5. Perry, A., Dunlap, G., & Black, A. (2007). Autism and related disabilities. In I. Brown & M. Percy (Eds.), A comprehensive guide to intellectual and developmental disabilities. Baltimore, Maryland: Paul H. Brookes Publishing Co.
6. White, S. W., Koenig, K., & Scahill, L. (2007). Social skills development in children with autism spectrum disorders: A review of the intervention research. Journal of Autism and Developmental Disorders, 37, 1858-1868.
Photo Credit: flickr.com