For the 12th consecutive year, April 2nd was celebrated as World Autism Awareness Day. That was just the start of an entire month devoted to Autism Awareness. The ultimate goal of Autism Awareness month in April and throughout the rest of the year is to improve public acceptance and understanding of people with Autism Spectrum Disorder (ASD). It also aims to be a champion for those on the spectrum as well as their families providing much-needed support. This perpetual advocacy is helping to accelerate research and interventional protocols for ASD.
Autism Spectrum Disorder is most recently defined by the DSM-V as “Persistent deficits in social communication and social interaction across multiple contexts…”-these contexts are displayed in behavioral, communicative, social-relationship, motor-skill, and other cognitive deficits in addition to stereotypies such as extreme inflexibility, repetitive movements, rigid thinking, rituals, strict food patterns, and excessive distress at small changes to environment or routine.
Whether you are aware of it or not, it is likely that your life has been impacted by a person with Autism Spectrum Disorder in some way. They may be someone close to you, such as a sibling, child, or friend. Conversely, they could be a stranger you take notice of in a public place. If they are on the severe end of the spectrum, they would be very likely in the care of a parent or personal attendant. You may witness an outburst or personal conduct that may come across as strange or troubling. For example, a behavioral meltdown may appear confusing and incongruous to surrounding circumstances. The behavior may be aggressive, self-injurious, and a little frightening.
Learning to recognize and react appropriately to, a severe ASD meltdown in a public space can make a very big difference in easing discomfort relating to hyper-sensitivities (or, hyposensitivities, depending on the context). It is important to be educated on the characteristics, behaviors, and realities of severe autism, fully understanding that there are variations, limitations, and with each case. Also know that each person will require varying degrees of accommodation, depending on the severity of their autism.
Just like not all disabilities are created equal, there is a vast divergence in characteristics of those individuals living with Autism Spectrum Disorder. In fact, the dissimilitude is so profound, that at one time they were divided into disparate diagnoses per presenting symptoms and severity. Asperger syndrome and pervasive developmental disorder-not otherwise specified — which were usually assigned to people on the milder end of the spectrum. Now the DSM-V umbrella term of autism spans the majority of diagnosed children and adults on the spectrum. This, unfortunately, leads the public into a deep-seated misunderstanding of the condition.
A lot of the blame is can be attributed to popular media shining a light exclusively on the high-functioning end of the spectrum, misleading the general public into thinking that this is the “face case” of autism when that is not based in reality. Streaming shows and movies paint the condition in the broadest of strokes, only the mildest, least offensive iterations, and expressions of the highest functioning form of this disorder. Meanwhile, an entire disabled population goes wholly unrecognized, in both the media and popular culture. This gross miscommunication is very much to the chagrin of the families and caretakers of people with severe autism who are faced with the full scope of realities of the condition daily. Moreover, the parents and family’s experience of caring for a child/sibling with ASD tend to get lost in the shuffle, largely ignored.
DSM-V Diagnostic Criteria of Autism
- Sensory Issues: Hypersensitivity to Sounds, Light, Tastes, Smells, Textures, Touch, Pressure, Fabrics, Clothing (i.e. Waistbands, etc. could be extremely uncomfortable)
- Child or adult may be unresponsive to pain or temperature.
- Self-Injurious Behavior: Performs activities that could cause self-harm, such as biting, hitting, or head-banging
- Aggression: Biting/Hitting Others, Damage To Property
- Eloping/Running Away (Associated Drowning Danger in nearby pools, retention ponds, lakes, other bodies of water.)
- Lack of eye contact as a child or adult, doesn’t point to objects.
- Has specific food preferences, such as eating only a few foods, or refusing foods with a certain texture.
- Can be Non-Verbal, Very late to develop speech, or hyperverbal without reciprocal conversational cues.
- Repetitive movements, such as rocking, spinning or hand flapping
- Characterized by rigidity: specific routines or rituals and becomes disproportionately upset at minor changes (Tantrums, meltdowns)
- Coordination issues and/or odd movement patterns, such as clumsiness or walking on toes, and has odd, stiff or exaggerated body language
- Often fascinated by details of an object, such as the spinning wheels of a toy car, but doesn’t understand the overall purpose or function of the object
- Doesn’t “play pretend” or “make-believe” or imitate others actions
- Fixates on an object or activity with abnormal intensity or focus.
Important Statistics About Autism
People affected by Autism Spectrum Disorder are not a homogenous group: each presenting case is different and varies in severity.
Autism is not a static condition: the symptoms have been known to exacerbate or ameliorate over time on a case-by-case basis with changes in therapy, medication, environment, CBD oil, other protocols.
It is growing in prevalence: Effects 1 in 59 children, up from 1 in 68 in 2014
Presents more often in boys than girls. (4 times as likely). The symptoms are more pronounced in boys. For example, often the affected individual’s fixations on singular subjects are deemed more “socially acceptable” for girls and their diagnosis gets overlooked.
Genetics has a bearing. Autism runs in families and has measurable biological markers.
Children with an autistic sibling or parent are 9 times as likely to have autism and 4.1 times the odds of having autism with an intellectual disability. Children with an immediate family member presenting with autism as well as an intellectual disability are 14.2 times likely to also have both than just autism at a 3.8 likelihood.
Autism has a comorbidity with other psychological disorders such as bipolar disorder, schizophrenia, epilepsy, severe anxiety, major depressive disorder, eating disorders. The comorbidity of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%.
Research shows that children and adults with autism endure more medical problems, and display more abnormal biological markers, “structural abnormalities that disrupt normal connections between brain regions and impede the flow of information across the brain” than their average peer.
Epilepsy and autism are intrinsically linked in pathology and, increasingly, are responsive to the same or similar treatments. These are invisible seizures occurring inside the brain. The same linked pathology can be noted about any of the metabolic, gastrointestinal, inflammatory and other comorbidities commonly found in people with autism.
National Council on Severe Autism
Autism Society of America
Realm of Caring
Challenging Behaviors Toolkit (Addresses Meltdowns, Crisis, Aggressive Behaviors, Self-Injury, Violence, Property Damage, Calling 911)
Programs Available For People With Autism Spectrum Disorder
Autism Housing Network
Autism Society of America
Inpatient Facilities (Easi Foundation Guide)
EASI Foundation/Ending Aggression and Self-Injury in the Developmentally Disabled
National Guardianship Association
Medicaid: Autism Specific
Together For Choice
Unfortunately, programs available for people with ASD aren’t always straightforward or as easily available as simply receiving a diagnosis and becoming immediately eligible for all services therapeutically necessary to accommodate said autistic person. In all too many cases, profoundly autistic children and families have been overlooked in terms of state and federal funding. There is such a breakdown of communication between agencies, in terms of what is needed per individual, that in some cases the children have received superior benefits and services in a foster care environment than in their biological parent’s home, simply due to some bizarre and cruel bureaucratic twist.
These unfortunate exceptions can be reduced with the promotion of public knowledge, a big push for research, as well as federal and state funding. Please do your part in increasing self-knowledge, advocacy, and advancements in research to help improve awareness. Enhanced interventions, acceptance, and understanding have the potential to improve the quality of life for autistic people and their families with every individual effort.