April is Autism Acceptance Month, and the DePaul University Library has an online collection of library resources focusing on autism and resources authored by people with Autism Spectrum Disorder (ASD). Let us clear up a few things about Autism. As a person close to Autism — I have a loved one who is on the spectrum — I will provide you with some real-life insight by answering some of the basic questions and offering ways you can make Neurodiverse people feel like they belong.
Autism Spectrum Disorder can be simply stated as one of the many variations of neurodiversity. The concept of neurodiversity emphasizes the idea that differences in neurological functioning should be accepted and respected as a natural part of human diversity, rather than stigmatized or pathologized. Neurodiversity suggests that differences in the way people think, learn, and process information, such as those associated with Autism, Attention Deficit Hyperactivity Disorder (ADHD), dyslexia, and other neurological differences, are not inherently negative or abnormal, but rather reflect normal variations in the human genome. Under this concept, Autism is a uniquely different human experience that falls outside what society has constructed as standard or normal. Individuals with neurological differences can contribute to society in unique and valuable ways.
Autism was first identified as a distinct disorder by Leo Kanner, a child psychiatrist, in 1943. His research was published in a paper titled “Autistic Disturbances of Affective Contact,” which described eleven cases of children who displayed a unique set of symptoms, including social withdrawal, language delays, and repetitive behaviors. This paper is considered the first comprehensive description of autism as a distinct disorder, and he is often referred to as the “father of autism.”
Since Dr. Kanner’s identification of autism there have been three major changes in the definition, classification, and diagnosis of the disorder. In 1980, the American Psychiatric Association added the term “autistic disorder” to the third edition Diagnostic and Statistical Manual of Mental Disorders (DSM-III). The DSM-III provided a set of diagnostic criteria for autism that were based on observable behaviors. In 1994, the DSM-IV expanded the criteria for autism to include Asperger’s syndrome, which is sometimes referred to as high functioning autism and had previously been considered a separate disorder. As of 2013, Autism and several other related developmental disorders (Asperger syndrome, childhood disintegrative disorder, and pervasive developmental disability not otherwise specified) are now classified under Autism Spectrum Disorder in the DSM-5.
Some of the common signs of autism are difficulty with social interaction, communication difficulties including delayed language development or the inability to communicate verbally, repetitive behaviors or engaging in strict routines, sensory issues of being hypersensitive or hyposensitive to sensory stimuli and having restricted interests. Diagnosis of autism involves a comprehensive evaluation by a team of healthcare professionals including a pediatrician, psychologist or psychiatrist, and sometimes a neurologist who specialize in the diagnosis and treatment of autism.
Over the years, there has been increased awareness of autism, leading to earlier diagnosis and intervention. This has led to better outcomes for children with autism, as early intervention can help to improve communication, social skills, and other areas of development. There are a wide range of treatments available to help people with Autism Spectrum Disorder thrive in our society. They include speech and language therapy, occupational therapy, social skills training, Applied Behavior Analysis (ABA), parent training and education and sometimes medication. There is no “best” treatment plan for people diagnosed with ASD because it manifests in diverse ways in different individuals.
Unfortunately, some of these treatments focus on forcing people to conform to society’s established standards of behavior. Many people with Autism are forced to undergo behavior modification therapy to help them better “function” in our society. Stimming or self-stimulatory behavior refers to repetitive or stereotypical actions that people with autism engage in to regulate their sensory experiences and emotions. Stimming may appear as unusual to others and may be discouraged during behavior modification therapies. However, stimming is necessary for people with autism to help them when they feel overwhelmed or uncomfortable by providing a sense of comfort and control in these situations. Stimming is one way for people with autism to express excitement, joy, or other intense emotions that they may otherwise find hard to communicate.
There are many misconceptions about autism that we should all be aware of to better help people on the spectrum feel included in our society. Stereotypes and generalizations are the foundations of the “ISMS & PHOBIAS,” racism, sexism, ableism, homophobia, transphobia, islamophobia. Modern society has used the majority rule to set standards across every aspect of our lives from appearance, morality, love and intimacy, gender roles, and race. Difference is treated as something bad because it falls out of the norm or standard. All people with autism are not the same. Autism is a spectrum disorder, which means that each person’s ASD is different. Autism is not caused by vaccines. People with autism have emotions and can experience a wide range of feelings. People do not outgrow autism because it is a lifelong disorder that continues into adulthood. All people with autism are not intellectually disabled; some individuals with autism have intellectual disabilities while others have average or above-average intelligence. Autism is not caused by bad parenting and autism cannot be cured. Autism affects everyone, not just boys. People with autism are unique individuals with their own strengths, challenges, and personalities and we must avoid making generalizations or assumptions about the disorder.
Universities provide a range of support services and accommodations to help students with Autism Spectrum Disorder succeed in higher education. At DePaul we have the Center for Students with Disabilities (CSD) dedicated to providing accommodations and support services to students with disabilities, including ASD. University Counseling & Psychological Services (UCAPS) offers counseling services that can help all students with or without ASD manage stress and anxiety, navigate social situations, and develop coping skills. Peer mentorship, sensory and communication support are also services that colleges and universities provide to help students with ASD.
Here are some ways you can support your fellow students with Autism:
- Educate yourself: Educate yourself about ASD and the challenges that students with ASD may face. This can help you understand their perspective and provide better support.
- Be patient and understanding: Students with ASD may struggle with social interactions, communication, and sensory processing. Be patient and understanding with them and try to accommodate their needs as much as possible.
- Communicate clearly and directly: Students with ASD may have difficulty interpreting nonverbal cues and subtle social cues. When communicating with them, be clear and direct in your language and avoid using idioms, sarcasm, or metaphors.
- Provide opportunities for social interaction: Many students with ASD struggle with social interaction, but they still need opportunities to practice and develop their social skills. Encourage and facilitate social interaction but be mindful of the student’s comfort level and individual needs.
- Offer practical support: Students with ASD may benefit from practical support, such as providing note-taking assistance, helping them organize their materials, or offering extra time on assignments or exams.
- Respect their privacy: Students with ASD may not want to disclose their diagnosis or discuss it in detail. Respect their privacy and allow them to disclose as much or as little as they feel comfortable with.
- Advocate for inclusive policies: Advocate for policies and practices that promote inclusion and accessibility for all students, including those with ASD to create a more welcoming and supportive environment for everyone.
Libraries can provide a variety of supports to help students with Autism Spectrum Disorder be successful in higher education including sensory-friendly spaces, assistive technology, accommodations, library instruction and staff training. Support for students with Autism should be individualized and tailored to the specific needs of the student.
Overall, there has been a greater recognition of the diversity and complexity of autism, leading to changes in the way we diagnose and treat the disorder. There is still much to learn about autism but creating a supportive and inclusive environment for all students, including those with Autism, is important for promoting academic success and overall well-being.
Here are books written by individuals with Autism in the collection that provide unique insights into their experiences and perspectives:
- “Sensory: Life on the Spectrum: An Autistic Comics Anthology ” by various comic writers who are all living with Autism.
- “Fearlessly different : an autistic actor’s journey to Broadway’s biggest stage” by Mickey Rowe
- “Queerly Autistic : The Ultimate Guide for LGBTQIA+ Teens on the Spectrum” by Erin Ekins
- “The secret life of a Black Aspie : a memoir” by Anand Prahlad
- “Odd girl out : my extraordinary autistic life” by Laura E. James
- “Authoring autism : on rhetoric and neurological queerness” by Melanie Yergeau
- Look Me in the Eye: My Life with Asperger’s” by John Elder Robison
- “Thinking in Pictures: and other reports from my life with Autism” by Temple Grandin
- “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman
- “Plankton dreams : what I learned in special ed” by Tito Rajarshi Mukhopadhyay
For more education about Autism, here are some organizations led by people with Autism Spectrum Disorder (ASD):
- Autism Women’s Network (AWN): Founded in 2009, this organization is run by and for Autistic women and nonbinary people. It provides advocacy, resources, and support to Autistic people and their families.
- The Autistic Self Advocacy Network (ASAN): This organization is run by Autistic people and provides advocacy and support to individuals with ASD. They work to promote acceptance and understanding of autism, and advocate for policies that support the rights and inclusion of Autistic individuals in society.
- The Global and Regional Asperger Syndrome Partnership (GRASP): Founded in 2003, GRASP is run by people with Asperger Syndrome (a form of Autism) and provides support, advocacy, and education to the ASD community.
- The Art of Autism: This organization is run by and for Autistic artists, writers, and performers. They aim to promote the work of Autistic artists and increase understanding and acceptance of autism through art.
Autism spectrum disorder. (2017). In Gale (Ed.), Human diseases and conditions (3rd ed.). Gale. Credo Reference: https://ezproxy.depaul.edu/login?url=https://search.credoreference.com/content/entry/galehuman/autism_spectrum_disorder/0?institutionId=2536
Rapoza, K. (2017). Autism (autism spectrum disorder). In Harvard Medical School (Ed.), Health reference series: Harvard Medical School health topics A-Z. Harvard Health Publications. Credo Reference: https://ezproxy.depaul.edu/login?url=https://search.credoreference.com/content/entry/hhphealth/autism_autism_spectrum_disorder/0?institutionId=2536
Autism spectrum disorder (ASD). (2016). In J. L. Longe (Ed.), Gale Virtual Reference Library: The Gale encyclopedia of psychology (3rd ed.). Gale. Credo Reference: https://ezproxy.depaul.edu/login?url=https://search.credoreference.com/content/entry/galegp/autism_spectrum_disorder_asd/0?institutionId=2536