Autism Spectrum of Disorders
Important note: This information is rapidly changing. This page has not been completely updated to reflect the most recent changes of the DSM-5. Some people expect that the recent DSM changes will reduce the number of new autism diagnoses, which may also reduce the number of students in schools who are identified as having an education disability.
Background and Prevalence Rate
It's no secret that Autism is growing both in awareness and prevalence rate. As a school psychologist people often ask me, "Why are more people Autistic now than before?"
As of the initial writing of this post (in 2011) the current rate of autism diagnoses is averaged to be about 1:150 (using data from 2007). In school terms, that means about one student in eight classrooms would be diagnosed with autism.
2012 update: now 1 in 88. One student in every fifth classroom.
2014 update: now 1 in 68. One student in every fourth classroom.
The growth is certainly present if you look at the above statistics. The Centers for Disease Control has a nice article that further explains some of this data, and offers some guidance for the future of autism awareness and research.
An interesting report was released which states that the cost to care for a person with autism over their lifetime may be over $2 million. Another interesting tidbit: the state of Utah saw their occurrences of autism double in six years.
What is Autism?
Autism is a neurodevelopmental disorder. That's a scientific/psychological term that means autism has it's root cause located in the brain, during a person's early developmental period. It is genetically-based, and it's not contagious. It's also not the result of vaccines (here's a related NBC news video) (here's a related NPR story) or mothers who do not provide enough nurturing for their newborns. Scientists still do not know what causes autism, although neuropsychologists are getting much better at early identification of autism. We do know that high birth rate, the use of forceps or a vacuum during birth, head circumference, and the use of anesthesia are not found to be related to the development of autism. Mothers who were abused as children were 60% more likely to have a child with autism than those who were not abused. When one child in a family has autism, there's about a 20% chance that a sibling will also develop autism.
Unlike many school-related educational disabilities, Autism is not a clearly defined disorder. In fact, it's quite diverse in the scope and sequence of it's development. Individuals on the autism spectrum tend to share a few similar characteristics, regardless of the specific subtype of autism. Perhaps the most established hallmark behavior is the repetitive, nonfunctional, movements of the body (most frequently the hands.) "Hand flapping", waving, finger twisting, etc are all common behaviors for both children and adults with autism. Some individuals may engage gross motor stereotypical behaviors (spinning, rocking, twirling in circles while standing). Another characteristic of autistic individuals is their limited use of verbal communication; language development is almost always delayed (and this lack of typical language development is usually one of the first signs of autism in toddlers.) Social relationships are difficult for students with autism to maintain; individuals with autism tend to have a difficult time interpreting the emotions, facial expressions, and body language of others. Aggressive behaviors are seen in about half of all children with autism. Food allergies and gastrointestinal issues are also common.
Despite what Hollywood displays, not all individuals with autism scream all the time, throw things, or have incredibly accurate mental mathematics calculation abilities. Those traits are present in some individuals with autism, sure, but it's certainly not the norm.
Most individuals with autism are often less able to adapt to sudden changes in their routine than are their non-autistic peers. Following the same routine daily is preferred for individuals with autism.
While the medical diagnosis of autism existed 70+ years ago (first listed in 1940), it wasn't used as a mental health diagnostic term until around 1984. The "Autism Spectrum of Disorders" - in the mental health arena - is newly identified. It's an infant in the ocean of mental health disorders. Scientists, doctors, educators, and parents continue to learn (and ask questions) about the ASD. We have all learned a lot in 70 years, but we have much more learning yet to do.
As the notice at the top of this page indicated, this page has not been updated to reflect the most recent updates to the DSM-5. There are differences between the DSM-5 and the information outlined in grey below. The following is for historical reference only.
Prior to May 2013, the DSM-IV-TR classified Autism into five distinct forms, which create the "Autism Spectrum of Disorders" (ASD):
Autistic Disorder (AKA "classic Autism")
Asperger's Disorder (AKA "High Functioning Autism" or HFA)
Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
Childhood Disintegrative Disorder (AKA Heller's syndrome)
One of the challenges we face is finding the right language to use to communicate an individual's specific Autism Spectrum Disorder. I generally use the term "ASD" to encompass all individuals diagnosed anywhere on the spectrum, and use "autism" to only refer to classic autism. Some people prefer to do just the opposite - they refer to "autism" to represent any of the above criteria. You may hear the term "Aspie" used informally to refer to individuals who are diagnosed with Asperger's disorder. You may also hear the phrase "on the spectrum" to refer to an individual who fits the criteria for diagnosis with an ASD, but is unspecified as to which subtype. Sometimes you'll see "Autism" (with a capital A) to refer to Autistic Disorder, while a lowercase a ("autism") may refer to any of the five conditions of the autism spectrum.
Why the Increase in the Prevalence Rate?
Researchers and scientists are still looking for that answer. I certainly don't have it. I can only offer you my opinion. My best guess is four-pronged:
The ability to diagnose autism is new. Doctors are not only diagnosing children, but also adults who have not previously been identified as having autism. I project that in a few years, we'll see the number of new identifications drop steadily, as less adults are being identified for the first time. Remember, 1984 was the first time mental health practitioners were able to utilize the term in the diagnosis of of their patients.
"Autism" is a buzz word. It's in the media and on people's minds. It's popular. Everyone seems to say, "I know someone who has autism", as if it were some kind of prize of which to be proud. This isn't at all to say that the ASD isn't important or that the public shouldn't know about autism. I simply suspect this is one reason why the prevalence rate of autism is rising. Better public knowledge of the issue causes more parents to ask himself or herself if their child may have autism. An informed and concerned parent is much more likely to ask their doctor about the possibility of autism than an uniformed parent.
The term is still largely undefined. I believe that doctors and mental health practitioners are over identifying related disorders/disabilities as "autism" in order to be able to prescribe medication which can be covered by their patients' insurance providers. I'm not saying I disagree with this practice; if I were a doctor, I would want to prescribe medication that would help my patient, even if that meant using the loosely defined term of autism.
Our ability at finding individuals with autism (and related disorders) is much improved from where it was 1, 2, 5, 10, or more years ago. As we learn more about the neurological and biological makeup of our society, we are certainly better able to diagnose and treat individuals with autism.
What Help Are Schools Able to Provide?
If your child's IEP team has determined that your child is eligible for special education and related services, an Individualized Education Plan will be written on your child's behalf. The contents of the IEP will be up to your team to determine, but typically include instructional time both in general education classrooms and some time with a special education teacher in a smaller class setting. Because of the language impairments that are present in most students with autism, it's likely that a speech and language pathologist (SLP) will be asked to assess, consult, or even provide direct speech/language therapy while at school. For more severe students, specialized physical training programs (PE, occupational therapy, physical therapy, etc.) may be considered. Sometimes school counselors or school psychologists will work with students with autism to help teach social skills.
It's likely that your child will receive some type of special schedule to help alleviate the stressful moments of traveling through the hallways with other students, or navigating through the cafeteria. Some students with autism find it helpful to use a visual schedule in elementary school which shows pictures of what event comes next in the day (math, recess, bathroom breaks, etc.) Behavior tracking charts and reward programs are often set up to encourage positive behavior and meeting their defined IEP goals. Some students with severe physical or language impairment may need to utilize some type of assistive technology device which allows for an easier method of communicating and interacting with peers and adults.
Special education teachers may wish to read this article about some evidence based practices for working with students with autism. Here are some important educational considerations for students with autism.
When autism is present in a child's life, it's a family affair. Fathers are at an elevated risk for depression. Mothers face increase stress. This BBC story states that getting a family dog might be a good thing.
Because autism is a neurodevelopmental disorder, treatment options are designed to help the individual live a functional life. There is no "cure" for autism.
There are also some "treatments" (term used loosely) which have been given governmental warnings to stop luring consumers with false hopes for improvement.