When I started to be concerned about my son’s development, I started to figure out what autism is. I really didn’t know much about it, other than that my law school roommate’s brother was autistic. So what really is autism?
A mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.
Ta-dah! Done, right? Wrong. Let’s try again.
There seem to be two real ways to define autism, one medically, and one as a state of being. Let’s start with the medical diagnosis first.
Autism Defined – Medically
Autism is a mental disorder. Sounds harsh, right? Well, that is how it is defined by the medical field. Don’t worry. We’re just talking about the technical stuff.
The American Psychiatry Association is the entity that helps define mental disorders. They periodically issue a thick book on mental disorder diagnoses called that Diagnostic and Statistical Manual of Mental Disorders (DSM). This is the standard for mental disorders used by doctors in the United States. There was is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system.
In 2013, the APA issued a new DSM, called the DSM-5. It contains the “latest and greatest” definitions of different mental disorders. The changes in how the DSM-5 defined autism (everything falls under a diagnosis of “autism spectrum disorder”) were a significant departure from the way the last edition, the DSM-IV defined it (diagnoses included “autism,” “Asperger’s syndrome” and others).
Under the DSM-5 definition of autism spectrum disorder (ASD), there are two really important criteria and three other criteria a person needs to meet in order to be diagnosed. I’ve simplified them here (but you can go here for the full definition):
- Persistent deficits in social communication and social interaction across multiple contexts.
- Restricted, repetitive patterns of behavior, interests, or activities.
- Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
- 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. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Why did I simplify things? Well, do you know what echolalia is? I don’t without Googling it. If you want to do a deep dive with better explanations and examples (or “exemplars” in doctor-speak), easily the best resource I found that has examples of ASD was developed in conjunction with the Center for Disease Control and is posted here.
Anyway, the first key component is a deficit in social communication and social interaction. This really means, can the person communicate? understand social cues? understand the back-and-forth of daily interactions? People with autism are challenged in this area. So, what is innate in most other people (and children) often has to be learned by those with ASD.
The second key component of is restricted, repetitive behaviors. What this means is really broad. This could mean unusual speech, movement or play. It could also mean a strong focus on topics or objects. It could mean difficulty with change in routines.
In the end, what does a diagnosis mean? That is where autism as a state of being fits in.
Autism Defined – A State of Being
So what really is autism? It is a spectrum. It’s a wide range of abilities in a wide range of categories. I recently read an excellent article in a blog of a parent to an autistic child called “Why You’re Probably Thinking of Autism Wrong.” This has been the easiest to understand of the autism descriptions I’ve come across.
She notes that autism isn’t just “autism” and “not autism.” And autism isn’t just “low-,” “medium-,” and “high-functioning” autism. Rather, there are different skills like speech (expressive communication), understanding (receptive communication), intelligence (cognition), how you hear, feel and sense the world around you (sensory integration), and others where a person might “low-,” “medium-,” or “high-functioning.” That is how you end up with some autistic individuals who can’t function in adulthood and others who can “pass” as normal.
From the parent perspective, every child is different and each parent’s situation is different. Where your child falls on the spectrum(s) – and, frankly, what your resources are – impacts your experiences. What will my experience be? Who knows. I guess we’ll find out this year, next year, 10 years from now and 30 years from now. But as for the experiences of other parents, I came across an excellent piece from The Atlantic, a compilation of parent stories that brought me to tears crying and laughing. It’s worth a read.
So what was the original question? What is autism? Good question.