Autism comes in many forms, and individuals on the spectrum can’t meet the challenges on their own, but does society realize what they need and provide it?
Photo by Caleb Woods on UnsplashThe first time I heard about a child with autism was from a colleague who had secured a volunteer position at a center for children with disabilities. If anyone had heard about the child's daily experiences, they would have called child protective services immediately.
What was happening in her home? Because of her nonverbal nature and difficulty interacting with others, the parents isolated her in a bathroom where she spent her days shredding toilet paper. There were no toys and nothing else for her. Her family went to work each day, leaving her in the bathroom.
In their culture, it was more than a shame to have a child with such impairments, and they feared becoming pariahs, so they hid her from everyone. Undoubtedly, she had autism, and little was being done at that center because they did not have professionals who could work with her.
Working at a psychiatric hospital, I then encountered an autistic young adult when they brought in a new patient. Strapped to a gurney, he had to be restrained in a special thousand-pound restraint chair in a day room in the hospital.
Nonverbal and extremely agitated, he tried to bite everyone, and his family kept him in a locked bedroom in their home for his entire life. His parents, now in their retirement years, knew he needed help they could not provide. Ultimately, they had him transferred from our hospital to a specialized unit in a New England hospital, where he was to have brain surgery to control his behavior.
The next person I heard of with autism was via a man's wife, who spoke with me as we sat at a seminar on sleep disorders. Our conversation, somehow, turned not to sleep disorders but to autism, and she told me her husband, a psychiatrist who was there, had autism. So here was a healthcare professional who also had autism but managed to achieve a high-level career. I wonder what type of interventions he had had as a child.
Prior to this encounter, I had read a book on a family that had a child born with autism and who, after attempting to find services for him, determined they would have to come up with a treatment plan on their own. When they went to pediatricians when the boy was several months old, they were told to return when he was three.
When they returned at age 3, they were told it was too late to do anything for him. How must they have felt? Even today, families in this situation work hard to find programs and funding for their children's needs, including mental health services and services to assist them in independent living as adults. The book the parents wrote was “Son Rise.” Today, I watched a segment of a movie that another family had made about their autistic son and how they were coping. It's called “Love and Communication.”
Various illnesses fall under the umbrella of autism spectrum disorders (ASD). People with ASD have trouble communicating and interacting with others to varying degrees. Other traits can include unusual behavior patterns, like difficulty switching tasks, focusing on small details, and reacting strangely to physical sensations.
As a person’s age progresses, their skills and requirements may change. People on the autism spectrum can range from very autonomous to severely disabled, necessitating ongoing care and support. The ability to attend school and find a job is also negatively affected by autism.
Roughly one out of every one hundred children worldwide is diagnosed with autism. The stated prevalence varies greatly across research; this estimate provides an average value. But the data for the United States is even more troubling, where the number of children with ASD has gone from 1 in 150 in 2000 to 1 in 36 in 2020. This is a huge increase. What causes autism, to date, is unknown.
Researchers have shown that autism is becoming more common, but the exact reasons behind this are still a mystery. It's possible that autism in unexpected numbers existed in the past but went undiagnosed because of a limited understanding of unusual behaviors in children who failed to meet expected developmental milestones.
Autism may have hereditary roots, since researchers have discovered both uncommon mutations and tiny, common genetic variants in autistic individuals. The relationship between heredity and environmental factors is a hotspot for new studies. As an example, a genetic mutation that causes autism in a child may be triggered by a pregnant woman’s exposure to dangerous pollutants. Vaccines and autism have not been found to be linked.
What services are available, and what do persons with ASD need? Undoubtedly, they need assistance from empathic individuals who can provide guidance in communication and life skills. According to the U.S. Department of Education, 40% of students with ASD spend at least 80% of their day in general education settings. However, teachers are not properly trained and have trouble meeting the needs of autistic students in regular classrooms or settings where they are included, especially when it comes to helping with behavior.
After analyzing 120 experiments and studies, researchers can now see that the research on helping students with ASD in inclusive settings has varying benefits. More study is needed to come up with and test ways to teach students with ASD who have more complex educational needs in a way that includes everyone. This means looking into both ways to get more people to participate actively in places that are welcoming and ways to teach so that more people can access the general education curriculum.
What about adults with ASD? Not everyone who has autism is able to succeed, like actress Daryl Hannah, Tallulah Willis, pop icon Sia, Elon Musk, or Susan Boyle.
Most of the research has concentrated on children, teens, and young adults, and a gap exists in the literature on older adults with ASD. The International Society for Autism Research in 2017 suggested the following questions needed to be addressed in research:
1. What questions should be asked to obtain appropriate background information about medical and developmental histories in older autistic adults?
2. How do we define the core assessments of basic cognitive function that are appropriate for autistic individuals across the spectrum of ability and across the lifespan?
3. Which aspects of co-existing conditions and mental health interventions need to be addressed in ASD?
4. What are the effects of psychopharmacology and the overuse of medication in autistic adults as they grow older?
A review of current news on ASD research topics is available online. For some additional sources of information on ASD, the following are provided:
ASD is a challenging disorder and requires meeting the needs, both known and unanticipated, that can be highly stressful. Experts are needed for these individuals as well as their families.