As a clinical psychologist, I regularly speak with caregivers who worry about their child’s development. Usually families are referred to me after a primary care pediatrician or a teacher has noted differences in their child’s interaction or communication. Autism is usually high on caregiver’s list of concerns, especially if they’ve looked up their child’s symptoms online. Many websites include extensive symptom checklists for autism that may mislead caregivers.
So, what is autism? That can be a difficult question to succinctly answer. Trying to define Autism feels a bit like trying to describe Love. It goes by a singular name, but its manifestations are so incredibly broad and varied that it defies simple distillation or description. I love my wife, I love my kids, I love my caregivers, and while I call what I feel for each “love,” each love is different. This is a little like what it’s like to define autism.
In the recent past, the autism spectrum included separate diagnoses with slightly different criteria; prior to 1980, ASD was not clearly distinguished in a diagnostic sense from other diagnoses such as childhood schizophrenia or intellectual disability. At present, there is one diagnosis, which goes formally by autism spectrum disorder (ASD). The diagnostic criteria can be found in the American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (also known as the DSM-5).
There are two primary criteria used to diagnose ASD. At the most basic level, ASD is a neurodevelopmental difference that impacts how a person communicates socially (criteria A) and includes a range of repetitive behaviors, a heightened preference for sameness and routines, intense interests, and sensory sensitivities (criteria B).
One diagnostic code cannot summarize and encapsulate an incredibly diverse developmental difference experienced by individuals with autism. You may have heard the phrase, “if you’ve met one person with autism, you’ve met one person with autism,” as it rings true for so many caregivers and providers as well. The take home message here being that each person who meets the criteria for ASD does so because of a unique combination of symptoms.
I’ve intentionally written “difference” here instead of “disability” as the presence of ASD alone does not in and of itself mean that a person on the spectrum also has a disability. In the recent past, we used to think that most people with ASD also had an intellectual disability (notable difficulties with intellectual and adaptive functioning), but more recent prevalence data suggests that this no longer seems to be the case. What’s more is that the environment in which a person lives, learns, and grows also impacts the definition of disability.
What sets ASD apart from speech and other developmental diagnoses is a fundamental difference in how a person relates to their social environment. Some of the early “red flags” that indicate a potential risk for ASD include: not copying or displaying facial expressions (e.g., smiling), not using meaningful hand gestures by 12 months (e.g., pointing, holding an item up to show, or waving good-bye), not meeting language milestones (i.e., babbling by 12 months, single words by 16 months, two-word phrases by 24 months). So while language delays can be a part of a person’s ASD diagnosis, not all people who have ASD also have notable language delays.
While the social communication criteria reads like a list of DON’Ts, the other half of the ASD diagnostic criteria includes primarily a list DO’s. Some of the behaviors observed in young children with autism include hand-flapping, lining-up cars and spinning their wheels; extreme difficulties with changes in routine; intense or idiosyncratic (i.e., door hinges, pieces of string) interests; and hyper- or hypo-sensitivity to sounds, sights, and other sensory aspects of their environment.
Now the thing that breaks my brain when trying to determine whether someone meets criteria for ASD is that these DOs and DONTs come in a multiplicity of combinations and can be further complicated by the presence of an intellectual disability, language impairment, a known medical or genetic condition, or a well-documented environmental exposure. This is all by way of saying that a person who meets criteria for ASD likely also meets criteria for another diagnosis (since the symptoms overlap with other diagnoses such as language delays, ADHD, anxiety). Moreover, someone who does not meet criteria for ASD may display some autism-type symptoms that impact their development and well-being.
Before describing what a caregiver can do if they have concerns about their child’s development, I feel ethically and professionally bound to comment on two important issues in ASD:
- Autism is not caused by “cold” caregiving;
- The likelihood of autism being caused by vaccinations is almost non existent.
I could belabor both points, but there are many other scientists and intelligent writers who have eloquently defended each issue better than I could.
If you are concerned about your child’s development, I strongly recommend the following:
- Get A Referral | There are a couple of ways to go about getting evaluated. The Center for Caregiver Information and Resources has a helpful guide for figuring out how to get the evaluation process rolling on the educational and medical level.
- Trust Your Gut | If you have serious concerns but a provider repeatedly gives you the “boys talk late” or “wait and see” lines, believe that you know your child well enough to know when something is up. Settle for nothing less than having your child seen by an educational and medical professional as soon as possible.
- Early Intervention (county or state level) or Special Education (school district level). This will not necessarily result in an autism diagnosis, but it will gather a team of specialists to assess and potentially work with your child.
- Developmental Medical Provider (medical doctor or nurse practitioner with specialized training in working with individuals with developmental differences). These types of providers often work in specialty pediatrics within a hospital or outpatient clinic.
- Find A Community | There are caregivers with children like yours and they are the people who really know what’s up in terms of getting you and your child support. There are different ways to find and make this community your own, but one place to start is Caregiver to Caregiver. Many states have a chapter, too: New York has a great one.
Figuring out the “right” type of help for your child is a learning process that blends both the personal and financial aspects of taking care of a child. Most caregivers usually feel like they can never do enough for their child and there is so much information available on the internet that it’s pretty easy to fall into a vicious cycle of doubt.
What I recommend is trying to do 1 or 2 things at a time rather than trying to do it all at once. It’s not fair to you to expect the world in an instant, and being as present as possible with your child is the greatest gift you can give your child right now.
I see Autism as Love reflected daily in the families I know and work with as part of my calling. Autism spectrum disorder is part of the human experience (1 in 68) that enriches and enlivens our society. Like any difference, Autism is worthy of acceptance and appreciation.