Light it Up Blue: Understanding Autism Spectrum Disorders
Light it Up Blue: Understanding Autism Spectrum Disorders
Categories: RECENT RESEARCH
Eric Scalise, Ph.D.
Stephanie Holmes, M.A.
What do music composers Amadeus Mozart and Ludwig van Beethoven, artists Michelangelo and Vincent van Gogh, physicists Sir Isaac Newton and Albert Einstein, Renaissance polymath Leonardo da Vinci, President Thomas Jefferson, and Microsoft Founder Bill Gates have in common? All are known or suspected of fitting somewhere on the autism spectrum. As a “spectrum” disorder, autism represents a wide array of symptoms—from mild to severe—that affect individuals differently; however, a common core of indicators influence the neurological development of social skills, empathy, communication, and flexible behavior. This developmental disability also crosses every racial, ethnic and socioeconomic group.
Autism is a label feared by parents, a challenge for educators, the subject of movies and books, often misunderstood, and sometimes caught up in the swirl of emotional controversy. So, what drives the need for greater recognition and has autism reached epidemic proportions? According to research estimates by the Centers for Disease Control and Prevention (CDC), 1 out of 68 children has been identified with Autism Spectrum Disorder (ASD), with boys (1 in 42) about five times more likely to be diagnosed than girls (1 in 189).1 April 2nd of every year is now known as World Autism and Awareness Day, and Light It Up Blue is a global initiative that was created to help get the message out.
Dr. James Coplan, a neurodevelopmental pediatrician from the University of Pennsylvania School of Medicine, maintains the increase is primarily due to changes in diagnostic criteria. He states the way current statistics are reviewed is directly related to the number of children who receive services under the heading of ASD. Prior to 1975, there were few if any educational rights for “handicapped” children, so no definitive baseline exists. However, Dr. Martha Herbert, a pediatric neurologist at Harvard Research School of Medicine, believes otherwise. Her team examined the rise in rates as a function of the change in diagnostic criteria. Yet, broadening of the criteria still accounts for only 400% of the 1200% increase from the 1980s, leaving a staggering escalation of 800% in the last 25 years not attributable to changes in diagnostic benchmarks.
Much of the debate centers on incidence verses prevalence rates. Incidence refers to the number of new cases that emerge in the birthrate of a population. Prevalence is the percentage of a population affected by a disease or disorder. To qualify as an ASD epidemic, the incidence based on birthrate must be determined, and this is not known with absolute certainty. Nevertheless, research has clearly shown a significantly higher prevalence of ASD among the present generation, indicating an, “explosion of ASD diagnosis,” but not necessarily an epidemic.
Signs and Symptoms
Symptoms of ASD vary from person-to-person, generally falling into three categories: social impairment, communication difficulties and repetitive/stereotyped behaviors. They manifest in a child’s early developmental period and impair social, occupational or other areas of functioning. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria includes the following (severity is specified according to the need for support):2
- Deficits in social communication and social interaction across multiple contexts.
- In social-emotional reciprocity, ranging from an abnormal social approach; to a reduced sharing of interests, emotions or affect; to the failure to initiate or respond to social interactions.
- In nonverbal communication behaviors used for social interaction, ranging from poorly integrated verbal-nonverbal communication; to abnormalities in eye contact and body language; to a total lack of facial expressions and nonverbals.
- In developing, maintaining and understanding relationships, ranging from difficulties in adjusting behavior to fit various social contexts; to difficulties in sharing imaginative play or in making friends; to the absence of interest in peers.
- Restricted and repetitive patterns of behavior, interests or activities.
- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., lining up toys, echolalia, idiosyncratic phrases, etc.).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal/nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, etc.).
- Highly restricted, fixated interests that are abnormal in focus and intensity.
- Hyper- or hypo-reactivity to sensory input or an unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse responses to specific sounds or textures, excessive smelling/touching of objects, visual fascination with lights or movement, etc.).
In earlier versions of the DSM, Asperger’s Syndrome (named after pediatrician Hans Asperger) was added to the category of Pervasive Development Disorders and referred to as part of the autism spectrum. Since that time, Asperger’s has become a common term in the fields of medicine, psychology, and education. A controversial change in the DSM-5 is the removal of Asperger’s Syndrome as a distinct disorder. The DSM revision team decided the term “autism” was too broad and hence, was responsible for the increase in autism diagnoses over the past 20 years.
Dr. Tony Attwood, a world-renowned autism expert, argues that those with Asperger’s (sometimes called Aspies) are usually not diagnosed until the ages of 8-11 and perhaps later for girls (10-13). The problem lies with the new DSM-5 criteria where clinical impairment must be noted before the child turns three. Unfortunately, associated symptoms may not be recognized until the child is school age and struggling with psychosocial skill development among peers. Advocates for Asperger’s as a separate disorder must wait to see what the impact will be on future diagnoses, treatment interventions and resource availability.
Since Asperger’s is a relatively recent term, many went through childhood, adolescence, and early adulthood undiagnosed, especially women who blend into mainstream culture better. More adults are being diagnosed in their late 20’s and early 30’s today. Asperger’s also affects marriage since Aspies grapple with reciprocal conversation, and have difficulty showing empathy and love. Studies reveal that 80% of marriages with an Aspie partner end in divorce. There is scant information available on counseling Aspie couples, but traditional marriage counseling tends to be unsuccessful and non-ASD spouses need to be better educated.
The exact causes of ASD are not fully understood or universally agreed upon. Possible triggers include genetic/chromosomal abnormalities or syndromes (seen generationally), severe infections that impact the brain (e.g., meningitis, encephalitis, celiac disease), metabolic or neurological factors, and exposure to certain toxins or illness during pregnancy (e.g., rubella, some chemicals). Additional considerations include certain prescription drugs taken during pregnancy, such as valproic acid (brand name – Depakote, a mood-stabilizing drug used to treat epilepsy and migraines), maternal gestational diabetes, bleeding after the first trimester, and premature and/or low weight births in children. Neuroanatomical studies point to a possible link regarding a combination of brain enlargement in some areas and brain reduction in others during pre- and early postnatal development. Other studies are beginning to explore the potential connection between ASD and certain comorbid conditions in a person’s peripheral nervous, immune and gastrointestinal systems.
There are many who believe childhood vaccines, especially the measles-mumps-rubella (MMR) vaccine, are a primary contributor to ASD. This particular controversy was based on a 1998 article by British physician, Andrew Wakefield. The study was partially retracted in 2004, fully retracted in 2010 and Dr. Wakefield was subsequently stripped of his medical license for unethical conduct related to his research. Following the initial claims made by Dr. Wakefield, several large epidemiological studies were commissioned by the CDC, the American Academy of Pediatrics, the Institute of Medicine and the U.S. National Academy of Sciences, all of which failed to corroborate the original findings. Nevertheless, some individuals continue to inquire whether or not certain vaccines can “activate” genetic triggers already present, thereby resulting in the development of ASD.
Assessment and Diagnosis
Assessing and diagnosing ASD is complex and time consuming. It can be several years after signs and symptoms first appear before an “official” diagnosis is given. This tendency may have something to do with a lack of awareness on the part of parents, understandable caution over misdiagnosing a child’s condition or concerns regarding a potentially damaging “label.” Screening for ASD is usually comprehensive as there is no single medical test to confirm a diagnosis. Multiple evaluations by health care professionals who specialize in developmental disorders are usually necessary (e.g., child psychologists, child psychiatrists, speech pathologists, audiologists, developmental pediatricians, pediatric neurologists, special education teachers). Diagnostic assessments typically include a parental interview; a medical exam, which may incorporate neurological and genetic testing; a hearing test to rule out other audiological problems; and screening for lead poisoning because of its ability to mimic autistic-like symptoms. Other evaluative measures may comprise of speech and language assessments, cognitive testing, adaptive functioning (e.g., the ability to problem solve and demonstrate appropriate social, verbal and nonverbal skills), and sensory-motor assessment.
Interventions and Treatment Protocols
There are various opinions about “curing,” or “reversing symptoms” of ASD. Most researchers understand ASD as a lifelong pervasive developmental disorder and therefore, it is usually not discussed in terms of a cure. However, early diagnosis and early treatment consistently utilizing a broad range of tailored interventions are believed to be the key. With standard protocols, it is often imperative to have medical supervision (an experienced M.D. or Dr. of Osteopathic Medicine) due to related health risks.
- Educational Services: By law, schools are not required to provide assistance absent a current (within three years) formal diagnosis. Once a diagnosis is established, a meeting for special services can be scheduled at the child’ school, and he/she is now eligible for services under the Individuals with Disabilities Education Act (IDEA). Parents need to brace themselves for what may be a tumultuous journey, especially when the student is on the higher functioning end of the spectrum. Many states have an Autism Society or Autism Advocacy groups who understand state/federal laws regarding special services and can help parents navigate the “system.”
An Individualized Education Plan (IEP) is developed based on test scores, teacher observations, and professional recommendations. Resources available to the child can include small group settings for taking tests/quizzes, extra time to complete assignments, occupational/speech therapy, social skills training, guidance/counseling for anxiety and transition, and in some cases, one-to-one staff support for the child who can do the mainstream work, but requires behavior assistance. School files typically will not follow into adult life because a diagnostic label for the purpose of educational intervention ends at twelfth grade. However, the correct diagnosis can make a world of difference in resources and tools for a student from grades K-12.
- Occupational Therapy: Finding an occupational therapist (OT) outside the school setting who understands and works with ASD children and Sensory Processing Disorder (SPD) is important. Many children struggle with fine motor skills (e.g., holding a pencil, tying shoes, working a zipper), daily living skills, personal space issues, sensory issues, and self-injury. An OT will evaluate and help determine a tailored plan of action.
- Physical Therapy: ASD children also struggle with gross motor skills (e.g., sitting in a chair, their walking gait, skipping, running, standing without falling over). Many students have underdeveloped muscle groups that could be strengthened through physical therapy (PT). Available PT options include dance and movement, gymnastic-type skill building, aquatic therapy, Hippotherapy (uses the characteristic movements of a horse to provide sensorimotor input), martial arts, and various types of play therapy. A good PT evaluation can help parents make choices for their child’s muscle tone and muscle group development.
- Applied Behavioral Analysis (ABA): ABA (a form of behavior modification that excludes hypothetical constructs) can foster basic skills such as looking, listening and imitating, as well as complex skills such as reading, conversing and understanding another person’s perspective. It can involve additional cost, but has been clinically shown to improve the behavioral aspects of ASD children.
- Social Skills Training: Many children do not grasp social context (e.g., how to read people’s body posture or tone, initiate or maintain conversations, initiate play/friendships, or how to recognize bullying or mean behavior toward them). This is more related to social IQ or etiquette and there are tools parents can incorporate in conjunction with a therapist. Pivotal Response Training for self-management and Developmental, Individual Differences, Relationship-based Approach (DIR, also called “Floortime”) are two examples.
- Cognitive-Behavioral Therapy (CBT): ASD is not a mental disease or disorder, yet is often comorbid with Attention Deficit Disorder, Obsessive Compulsive Disorder, anxiety disorders, emotional dysregulation and other behavioral issues. Children will eventually realize they are “different” then their peers and may need help processing these differences. Individuals often struggle with anxiety and depression (normal markers may be masked) and the upward trend of ASD-related teen suicide has become alarming (60% contemplate suicide by age 13). Having a competent therapist is a valuable asset to the family as they navigate educational milestones and the new challenges awaiting each transition.
- Medical Supervision: Many in the mainstream medical community believe autism is primarily caused by genetic and structural deficits, thereby emphasizing a combination of behavioral therapies and pharmaceutical treatments. Other professionals, however, strongly believe ASD results more from biomedical factors (toxins, immune deficiencies, gastrointestinal inflammation). The Defeat Autism Now (DAN!) project, created by the Autism Research Institute, outlined an approach to autism treatment called the “DAN! Protocol” based on the biomedical theory. Here, doctors often recommend chelation (removing heavy metals from the body, especially lead, mercury and arsenic), vitamins and supplements, a gluten/casein-free (GFCF) diet and various options of detoxing before considering biomedical treatment.
While ASD remains a complex issue requiring ongoing research, a pro-active approach with children and their families is important—letting them know that “different” does not mean defective or less than. The promise of Jeremiah 29:11 is inclusive for all those with autism spectrum disorder: “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” (NIV)
1Centers for Disease Control and Prevention. Retrieved from cdc.gov/ncbddd/autism/data.html.
2American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Washington, D.C.: American Psychiatric Publishing, p. 50-59.
3McPartland, C.; Reichow, B.; & Volkmar, F. R. (2012). Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. Journal of American Academy of Child and Adolescent Psychiatry, 51, 368-383.
Eric Scalise, Ph.D., is the former Vice President for Professional Development with the American Association of Christian Counselors, as well as a current consultant and their Senior Editor. He is also the President of LIV Enterprises & Consulting, LLC, and a Licensed Professional Counselor and Licensed Marriage & Family Therapist with more than 36 years of clinical and professional experience in the mental health field. Specialty areas include professional/pastoral stress and burnout, combat trauma and PTSD, marriage and family issues, leadership development, addictions, and lay counselor training. He is an author, a national and international conference speaker, and frequently consults with organizations, clinicians, ministry leaders, and churches on a variety of issues.
Rev. Stephanie C. Holmes, M.A., is a Certified Autism Specialist, a Licensed Christian Counselor with the Board of Examiners for Georgia Christian Counselors, a Board Certified Christian Counselor with the International Board of Christian Counselors and was formerly an LPC in North Carolina. When Stephanie’s oldest daughter was diagnosed with Asperger’s Syndrome, she changed her focus to the world of educational plans and understanding how to help special needs students in the classroom and their families. A current focus includes counseling and consultation for couples with a high functioning autism partner.