What is Autism Spectrum Disorder?
originally written for and published on Harkla.co
Autism is a developmental disorder that is marked by social communication deficits and restrictive or repetitive behaviors. That seemingly simple definition is deceiving, however, because the wide range of autism spectrum disorders affects each person with autism differently.
The Prevalence of Autism
In 2014, the U.S. Centers for Disease Control reported that 1 in 68 school-aged children were diagnosed with Autism Spectrum Disorder. A more recent parent survey conducted by the National Center for Health Statistics puts that number much higher, reporting 1 in 45 children aged 3 and older have autism. An autism diagnosis occurs across racial, socioeconomic, and ethnic groups. The latest research puts the incidence of autism as being 4.5 times more likely among boys than girls. With autism being an increasingly common diagnosis, it’s likely that someone you know or have interacted with recently has been affected by autism - in their families, communities, or schools.
Perhaps you’re reading this article to gain understanding as a supportive friend, curious neighbor, or concerned grandparent.
Perhaps you’re a parent reading this article in hopes of gaining some insight into your child’s development, and concerned about your child possibly having autism.
Whatever your reason for wanting to inform yourself on autism, hopefully this will provide you with the information you need to seek additional resources and be a more conscious citizen in your interactions with people on the autism spectrum.
What Causes Autism?
In 2013, an estimated $305.6 million went towards autism research (disability scoop). These funds paid for research on causes of autism, treatments, diagnoses, and services, among other issues. After an autism diagnosis, it is a common question for parents to ask: What caused my child’s autism? The current answer is: There is no simple response.
Research points to a combination of potential causes of autism that may or may not play a role in the diagnosis. Autism Speaks outlines three categories of risk factors that contribute to autism: genetic, environmental, differences in brain biology. Research supports that a combination of these risk factors results in autism but, just as every child with autism is different, potential “causes” or “combinations” of risk factors manifest differently for every child.
Here are some of the risk factors that research has supported:
Family history of autism (sibling has autism)
Advanced parent age
Genetic mutation
Sex of baby - boys are 4 times more likely than girls to have autism\
Extremely pre-term birth (prior to 26 weeks gestation)
Comorbid diagnosis such as Fragile X or Tuberous Sclerosis
Researchers are also investigating the potential risks associated with air pollution, and drug/toxic/heavy metal exposure prenatally, and reproductive assistance (IVF) for multiple births.
The Centers for Disease Control and Prevention is currently conducting a Study to Explore Early Development (SEED) across communities nationwide, to better understand potential risk factors for autism.
Hopefully, as additional research is funded and we learn more about the potential causes or risk factors associated with autism, a parent’s question can be answered with more clarity. Until then, there is no 100% answer which also means that autism is not a preventable diagnosis.
Early Signs of Autism
Your child’s pediatrician will screen your child for autism at well-check visits at 18-months and 24-months, however parents should always communicate concerns about your child’s development whenever you have them! This American Academy of Pediatrics article outlines what a well-check screening for autism could look like.
image courtesy of CDC.gov
Signs of autism are categorized into social differences, communication differences, and behavioral differences (repetitive and obsessive behaviors). A skilled clinician who is trained in screening for autism will be able to explain how these differences go beyond some other “developmental delays.”
Here are some resources on the early signs and symptoms associated with autism.
If you continue to have concerns about your child and would like to pursue an autism screening by someone other than your pediatrician, you can contact your state’s Early Intervention or “Birth to Three” program. Autism Speaks provides a state-by-state directory of Early Intervention programs that will provide you with websites, phone numbers, and relevant information for your state of residency.
Remember that an autism screening does not result in a diagnosis of autism. If your child requires additional testing based on the findings of the screening, he/she will be referred to a specialist who is trained in the diagnosis of autism spectrum disorders.
Evaluating for Autism
In order to diagnose an autism spectrum disorder, a specially-trained clinician such as a child neurologist, neuropsychologist, psychologist, and/or developmental pediatrician will administer an evaluation that directly assesses your child’s skills in terms of social interaction, communication/language, and behaviors.
An evaluation for autism is typically comprised on observational data by a skilled clinician(s) and parent input in the form of a questionnaire.
Evaluations that are commonly used in an autism evaluation are:
Autism Diagnosis Interview - Revised (ADI-R)
Autism Diagnosis Observation Schedule (ADOS)
Childhood Autism Rating Scale (CARS)
Gilliam Autism Rating Scale (GARS-2)
Communication and Symbolic Behavior Scales (CSBS)
The Autism Diagnosis Observation Schedule (ADOS) is the diagnostic tool that is most commonly used to evaluate a child for autism. The Child Mind Institute does a great job explaining each of these tools and what parents should expect from an autism evaluation - including key questions to ask of your clinician!
An Autism Diagnosis
Autism Speaks provides parents with the most recently revised diagnostic criteria for Autism Spectrum Disorder as published by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and we’ve outlined the basics of those criteria below.
Persistent deficits in social communication and social interaction across multiple contexts, as manifested by:
Deficits in social-emotional reciprocity,
Deficits in nonverbal communicative behaviors used for social interaction,
Deficits in developing, maintaining, and understanding relationships
Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:
Stereotyped or repetitive motor movements, use of objects, or speech
Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior
Highly restricted, fixated interests that are abnormal in intensity or focus
Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment
Symptoms must be present in the early developmental period
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.
Remember, regardless of what your child’s diagnosis is - whether they have an autism diagnosis, are awaiting an evaluation, or show signs of developmental delay, he/she can still receive skilled intervention and therapies.
Therapies for Autism
Children with autism benefit from therapies to improve developmental skills including: language, communication, social skills, motor skills, academic skills, and life skills. Skilled clinicians work to set measurable goals and align therapeutic activities with those goals in order to help your child make progress. Examples of therapies that benefit children with autism are:
Occupational therapy - sensory integration therapy
Physical therapy
Speech & Language therapy
Hippotherapy - equine assisted occupational therapy
Social Skills Classes
In addition to these therapeutic interventions, alternative therapy approaches have gained popularity for treating symptoms associated with autism. While many of the above-mentioned therapies for autism are deeply rooted in evidence-based outcomes and research, these alternative therapies may not be. As with any intervention, parents should consult their medical providers and weigh the potential risks of all proposed therapies.
Dietary supplements - Omega 3, Melatonin, Probiotics
Gluten-casein free diets
Hyperbaric Oxygen Chamber
Chelation therapy
Autism and Sensory Processing
At Harkla, we work to provide parents with resources and products to support their child’s developmental and sensory needs. Sensory processing is a term that you will hear frequently when talking about your child’s preferences or aversions to certain sensory activities, highly specific interests in “sensory” toys, or need for sensory “tools” to help him interact more appropriately.
Sensory processing is the way that our central nervous systems take information in through our body’s senses, internally process that information, and then allow us to respond appropriately. When one’s central nervous system has difficulty processing any of this sensory information, the body’s responses are atypical and can be observed in motor, language, or behavioral skill difficulties. Occupational therapists diagnose these atypicalities as Sensory Processing Disorder or SPD.
The STAR institute estimates, based on their research, that 75% of children with autism have “significant symptoms of sensory processing disorder.” For people with autism, the sensory processing dysfunction can manifest in language delays
or deficits, fine and gross motor delays, strong sensory interests, sensory aversions, an inability to interact with people and objects, an inability to stay within an interaction, repetitive sensory stereotypies (stimming), and much more.
Now consider how many of those symptoms of sensory processing were also mentioned in the diagnostic criteria of the DSM-5.
When you do your research on which therapies may be appropriate to consider for your child with autism, you’ll recognize how many of the interventions provide a multi-sensory approach to programming by supporting sensory processing skills.
Autism in the Movies
So, by now you’ve likely had your fill of facts, resources, statistics, and scary medical jargon. If you’re a visual learner, consider finding an engaging documentary that chronicles real-people’s journeys - loving, learning, working, and living with autism. Fortunately, autism is an increasingly common topic in film these days. This list of the 10 Best Documentaries about Autism is sure to inspire you!
Web-Based Resources
There are many professional organizations that aim to educate parents on Autism Spectrum Disorder. Of course, any list would be remiss not to include Temple Grandin, easily the most influential woman with autism!
Takeaways
With statistics like “1 in 68 kids has autism,” it is important to educate yourself as a parent, grandparent, friend, or world citizen as you will most likely encounter someone who is directly affected by the disorder. Be sure to check out the additional references in this article to continue your own research as it pertains to your child, loved one, or neighbor. The Harkla blog is also a great place to find more information too!