Disability Informatics & Information Open Resources
As is frequently stated, “If you’ve met one person with autism, you’ve met one person with autism.” This disability, though presents with common threads of traits, is incredibly varied. Here, we will discuss the signs of ASD, history of services, technology needs, and current issues.
Presently, autism is referred to as Autism Spectrum Disorder (ASD). ASD includes a variety of traits and conditions. ASD can present with social, speech, and developmental delays, affecting about 1% of our population. ASD is thought to be both genetically and environmentally caused, but research is still being conducted to fully understand the causes. ASD, as stated in the name, is truly a spectrum, as those diagnosed (and, undiagnosed) have greatly varying degrees of challenges. Some challenges are hardly perceptible to others, while some challenges are completely overwhelming.
These challenges usually present when individuals are toddlers, around the ages of two and three years. Sometimes, traits present even earlier, before the age of two, which is beneficial in structuring intervention strategies. Typically, for the most ideal results, therapies begin as early as possible. All of the signs are only possibilities—children may or may not present with each sign and if they present, the degree will vary. By the age of six months, caretakers might observe a lack of smiles or expressions of engagement, in addition to little to no eye contact. By the age of nine months, the child might continue to lack engaging facial expressions, plus few instances of sound exchanges. By one year, the child might be observed with a lack of chatting, acknowledgment of their name, and interactive gestures. By sixteen months, the child might use few to no words, and by two years might not use meaningful multi-word phrases.
Children with ASD, at any point, might suddenly lose speech skills that they had already developed, avoid eye contact, prefer solitude, struggle with perceiving or understanding emotions of others, have delayed speech development, repeat speech patterns and behaviors, resist changes in environment and routine, maintain interest in limited subjects, and exhibit extreme reactions to stimuli. Often, children who do not have ASD will also exhibit some of the aforementioned traits, so it is important for caretakers to have children examined and diagnosed by a healthcare professional. There are resources online for caretakers to review in order to determine whether or not students should be screened for ASD, but any concerns should be taken seriously. Since ASD is a more recently understood condition, there are many undiagnosed adults.
Individuals with ASD (or, autistic individuals, depending on how the individual prefers being referred to) are included in the neurologically diverse community. Often, the ASD community will refer to individuals without ASD as “typies,” which is short for “neurotypicals.” People from the ASD community provide extremely informative insight into the causes of their behaviors, such as issues taken with certain stimuli. They can also provide advice for making certain situations easier to deal with, based on their own experiences. Some situations are simply part of life, such as dental and doctor appointments, haircuts, etc. These experiences are extremely sensory-heavy, a sensation only an individual with ASD can fully understand. As life goes on for these individuals, they learn how to better cope with their personal challenges, so ASD presents differently (outwardly) in adulthood. As mentioned before, therapies can also help individuals to catch up, developmentally, and more efficiently develop coping tactics for a more enjoyable adulthood.
ASD was first officially noted in 1943. Dr. Leo Kanner noticed that a particular group of children, who were already known to have mental disabilities, exhibited similar traits. All struggled with speech and social interactions. They each also had their own set of repetitive behaviors. His observations are still accurate today—he also noticed issues with transitions and developmental regressions. At this time, the idea of ASD was finally formed.
Though ASD was defined and was slowly being understood, ASD individuals were still pushed out of society instead of kept in families. Institutions often housed these individuals, sadly. At the time, doctors believed that the many attachment and developmental challenges seen in ASD were the result of “refrigerator mothers,” or parenting styles that were not engaging and bordered on neglectful. This assumption led to parental embarrassment for those with ASD children, which also contributed to individuals with ASD being institutionalized.
Since, ASD has been furthered defined, with Dr. Hans Asperger conducting significant research with children who presented with some similar and some different characteristics. They differed in that they did not exhibit speech or cognitive delays. Unfortunately, these critical studies were not published for three decades. Today, there is a greater understanding of ASD and parents are no longer blamed (generally) by the public for having children with ASD. Instead, genetic and environmental causes are widely accepted. Therapies have been designed for helping ASD individuals deal with their particular challenges, and fields like education are much better equipped to work with persons all along the spectrum (though, there is still plenty of room for improvement).
Technology that aids with disabilities is referred to as assistive technology. There is a wide variety of technology that can help individuals with ASD in a multitude of ways. For instance, technology can aid with communication, schedules, and motivation.
For communication, both children and adults can benefit from technology like apps. Social cues can be difficult to perceive, and needs can be difficult to express, and there are many apps that address these specific challenges. These apps can be educational, such as for learning emotions of others, or they can give nonverbal individuals the capacity to express themselves and communicate through pictorial apps, etc.
For scheduling (and, other tasks) visual cues can be extremely helpful for ASD individuals. Visual schedules can be constructed out of physical materials, such as construction paper and pictures, but they can also be done on apps, which is more portable than a giant poster taped up in the kitchen. Having a schedule constantly at hand can be reassuring and more beneficial for individuals with ASD.
Motivation can be addressed to help develop rewarding behavior. Once again, apps can address motivation, but also games on tablets, phones, and gaming systems can help motivate kids, and even adults, who have a particular love for a game. Being able to play the game can be a way to motivate individuals to practice learned behaviors or accomplish tasks. Programs can also motivate people to complete disliked tasks, like listening to Pandora on a tablet when it is bedtime. For all of these, technology being a tool to assist can act as a barrier since technology is not affordable to all individuals.
Not only does ASD contend with controversies surrounding disabilities but also issues specific to ASD. The causes of ASD are hotly debated, along with cures, treatments, research, and neurodiversity.
Though researchers are closer to knowing the causes of ASD and believe that those lie in genetics and the environment, certain people and groups have other beliefs that are controversial in the general public. For instance, the belief of some is that vaccinated children can cause ASD, causing people to not vaccinate children, leading to public health issues. Some individuals very strongly that vaccines are harmful, but others do not. Also, as mentioned previously, some believe that parenting practices are the cause of ASD. So, despite there being scientific evidence of certain facts, the causes are still debated. People also believe a variety of environmental factors contribute to ASD, such as gluten, sugar, illnesses, etc.
While researchers and the mainstream public state that there is no cure for ASD, just treatment, many believe that the disorder can be completely cured. The instances where people believe that ASD was cured was actually the result of a misdiagnosis. Some organizations actually have “Cure Camps” where participants fundraise for research to find a cure.
Of course, treatments are also controversial and debated widely. One treatment that is not agreed upon is chelation, which is the removal of heavy metals from one’s body. This particular treatment is not supported by research but is still believed in by certain groups. In fact, it has caused at least one recorded death. Aversive treatment is another implemented treatment that is frequently debated amongst groups. During aversive treatment, individuals are given a negative stimulus when they exhibit negative behaviors. The negative stimulus is often a shock, and this treatment is still being given in schools in the United States. Other treatments exist that are controversial, but less so, because they are not harmful to the same degree. These are usually more passive treatments that result from an individual’s belief in the cause of ASD, such as gluten being the cause and going gluten free being the treatment.
Not only is there controversy about the topics of research, such as treatments and cures, but how money is allocated within the research realm is the subject of debate. Some dislike funds being put towards areas that they believe already have enough research, such as vaccines causing ASD. These opinions can cause divides between groups and organizations, especially if an individual feels strongly about funds being put towards a very particular aspect of ASD.
Finally, neurodiversity is debated in regards to ASD. Neurodiversity is seen as neurological differences being respected as a social category and everyone being treated equally despite the differences. Controversy stems from individuals either believing in a cure or not. Those who do not believe in a cure support neurodiversity, while those who think a cure is possible do not see neurodiversity as existing because that would indicate a lack of a cure. Neurodiversity supports a difference in the wiring of a mind, and that is permanent, cannot be cured.
I created a website geared towards children with resources for them to explore. I aimed to have multiple types of media and tried to appeal to both kids with ASD and kids without, since any child could have the need to learn about ASD.
“Autism Spectrum Explained,” a website detailing difference aspects of ASD, has this page, which is entirely devoted to various controversies surrounding ASD. The page is divded into six categories, each of which delves into various controversies within those categories. Additional resources for further research are included. This webpage provides a quick introduction to ASD controversies for beginning research and can act as a springboard for subsequent resources.
Created by a Speech Language Pathologist, this website provides a wide variety of games for caregivers to use with kids or for kids to enact themselves. The games are physical games, not computer or video games. Each game has plenty of researched background into why and how the game is effective, so users can be very informed when using the resource.
This website provides both physical and online games for kids with ASD. The games and ideas are sectioned off by topic or skill that an individual might want to practice. The site is mainly geared towards caretakers, except for the link to online games that is specifically for the use of children. The physical games are more instructive for how adults can implement them into daily life.
“Autism HWY” is a massive online resource containing various types of media and sources for anyone needing information on ASD. This website hosts links to blogs, articles, forums, games, events, and specialists. Essentially, this website has it all and is a wonderful comprehensive resource for individuals with ASD of all ages, inlcuding younger kids.
The popular “Kids Health” website hosts a section about ASD, explained in terms that children can understand. The terminology and aspects of the disorder addressed are on a level that applies to children. And, the page is frequently reviewed by medical doctors, so the information is reliable and verified.
This website provides resources for kids with disabilities, including ASD. The resources are divided up by skills and types of resources. For example, one can search by “Social Skills” or “Picture Cards.” The website is organized and colored in a way that is appealing to children, but adults can also find great use in the website’s resources. There are specific sections for parents and teachers, too. Being education-based, educational products are also sold through this website for educators working with the ASD population.
This forum repository contains an incredible number of forums for people with ASD, contributed to by people with ASD. The general public can have access, but the entire site is run by the ASD community. Forum threads about any subject can be found, and this is a terrifiv resource for individuals with ASD to communicate with others in the community in a low-stakes, understanding environment. It is also a very helpful tool to individuals who have been recently diagnosed and are in need of direction.
This website simply lists a large number of videos for kids with ASD. The types of videos vary greatly. Some are subject-related, like about math, and some address more ASD-specific needs, such as speech and vocabularly. Kids can learn in a more enjoyable environment and practice skills or subjects that might be difficult to keep up with in a traditional classroom environment.
This page from the greater “National Autism Center” website addresses the history of ASD and treatment since discovery. Though a briefer summary, it hits key points in the historical timeline and can be a good starting point for researchers to learn the overall picture of ASD’s history.
On this page, the “Applied Behavior Analysis Guide” lists thirty famous individuals who have been diagnosed with ASD or who are strongly suspected to have had ASD. Most of the people are older or from centuries past, but they are all very well known and brilliant in their fields. Pictures and a short description of each are provided, detailing their accomplishments. This page demonstrates the beauties of neurodiversity.
For caretakers needing to homeschool their children, this website provides a plethora of educational resources, even lesson plans, for kids with ASD. Each subject and lesson has extremely detailed background so that even novice educators can use the lesson plans provided in an informed manner. The website is laid out in such a way that older kids can navigate and review the resources, too, if extra help in certain subjects is needed.
On this page from the general “Autism Speaks” website, assistive technology is defined and links are provided to further resources about technology and how it can be used with ASD. Additional pages describing various areas where apps and similar technology are useful and blog posts from individuals with ASD who have used assistive technology are listed.
This blog is written by Ethan Hirschberg, a teenager with ASD. He writes about his daily life, which he also does speaking engagements about. He also provides links and resources for visitors to the blog. Being authored by a person with ASD, this resource is a verified, real perspective of the disorder and therefore extremely important for the ASD community.
“Autism Speaks,” an extremely comprehensive website about ASD, has this page that defines ASD and links to other, shorter pages that answer more specific questions, such as about early signs. This reosurce is ideal for adults, but can also be used by younger ages depending on literacy level. It very plainly lays out what to expect and how to navigate having the disorder or interacting with an ASD individual.
Resources for Dystonia/Dysphonia