What is autism?

Autism, or autism spectrum disorder (ASD), is characterized by challenges with social skills, repetitive behaviors, difficulty with expressive speech and/or speech comprehension. Autism is known as a spectrum disorder because each individual is affected differently. Unlike other disorders, there is no “look” to autism. Autism is diagnosed more often in males, but females are affected as well. Autism does not discriminate. Autism can affect any race, gender, religious affiliation, and geographical location. The rates of diagnosis do vary worldwide. In Indiana, 1:59 children are diagnosed with autism. Children do not outgrow autism, it is a life long disorder and supports throughout the lifespan are necessary for most individuals on the autism spectrum. Early intervention is the key to improved outcomes for individuals affected by autism.

Three Levels of Autism

The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) provides three clear levels based on the individual’s requirements for support. These three levels of autism allow specialists to make more specific diagnoses. This helps create more effective treatment plans and allows families and caregivers better understand the individual’s needs.

ASD Level 1: Requiring Support - This is the mildest form of autism and would formerly have been referred to as Asperger's Syndrome. Individuals with ASD level 1 may have difficulty understanding social cues and may struggle to form and maintain personal relationships. Autistics with level 1 autism may understand and speak in complete sentences, but have difficulty engaging in back-and-forth conversation. Autistics diagnosed with ASD level 1 experience some inflexibility of behavior, like difficulty switching between tasks, staying organized, and planning.

ASD Level 2: Requiring Substantial Support - Social communication and repetitive behaviors are more obvious with ASD level 2 than with level 1 autism. Autistics on this level have challenges in both non-verbal and verbal communication. They also have reduced or abnormal responses to social cues. Inflexibility of behavior is also more pronounced than in ASD level 1. Repetitive behaviors occur more frequently and may be obvious to those in community settings. Individuals with level 2 autism may have difficulty coping with changes in routine, which can cause challenging behavior.

ASD Level 3: Requiring Very Substantial Support - ASD level 3 is characterized by severe challenges in social communication as well as extremely inflexible behavior. Individuals with level 3 autism will be nonverbal or have the use of only a few words. Autistics at this level rarely initiate social interaction and may interact with others abnormally to meet an immediate need. Individuals with level 3 autism display inflexibility of behavior, with extreme difficulty coping with changes to routine. At this level, restrictive or repetitive behaviors interfere with the individual’s ability to function. Changing focus from one activity to another may come at great difficulty and cause significant distress.

Books that may be helpful for your autism journey:

Ten Things Every Child With Autism Wishes You Knew- Ellen Notbohm

Ten Things Every Student With Autism Wishes You Knew- Ellen Notbohm

The Out of Sync Child- Carol Scott Kranowitz

The New Social Story Book- Carol Gray

The Way I See It- Temple Grandin

The Loving Push- Temple Grandin and Debra Moore

Autism Life Skills- Chantal Sicile-Kira

NeuroTribes- Steve Silverman

Look Me In The Eye- John Elder Robison

A Different Key- John Donvan and Caren Zucker

Spectrum Women- Barb Cook and Michelle Garnett

Neurodiverse Relationships- Joanna Pike and Tony Attwood

We’re Not Broken- Eric Garcia

Gender Identity, Sexuality and Autism- Eva Mendes and Meredith Maroney

Puberty and Sexuality Books by Kate E. Reynolds - The following books are resources for you to navigate difficult issues such as public toileting, changes in the body, sexual desire and masturbation. They are written so that an individual with autism or other ID/DD diagnosis could be given the book to read themselves. There is a version for males- Tom and females- Ellie. Please review the material yourself and determine if it’s appropriate to your child’s developmental age before giving your child the book to read.

• Tom Needs To Go or Ellie Needs To Go

• What’s Happening To Tom or What’s Happening To Ellie

• Things Tom Likes or Things Ellie Likes

• What is Sex?

• What is Pregnancy?

A brief history of autism.

The word “autism” was first used by a German psychologist named Eugen Bleuler in 1911 to describe symptoms of childhood schizophrenia. In 1926 a Russian child psychologist Grunya Sukhareva, writes about children with autistic traits She was the first to publish a detailed description of autistic symptoms. In 1943 Leo Kanner published Autistic Disturbances of Affective Contact, describing 11 children who displayed "a powerful desire for aloneness" and "an obsessive insistence on persistent sameness.” This article also explains explaining how autism was not a precursor to schizophrenia, and that the symptoms of autism appeared evident and present at birth and early life. Later in 1949, Kanner claims autism is caused by “refrigerator mothers”. A theory that parents that are cold and distant to their young children. This claim is reiterated by other psychologists for the next 20+ years. It was 1964 when Bernard Rimland publishes Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, finally challenging the “refrigerator mother” theory and discussing the neurological factors in autism. In the same year, researchers in California begin working on their theory of Applied Behavioral Analysis (ABA) therapy for autistic children.

Around the same time Dr. Kanner is making his discoveries, a Austrian pediatrician, Hans Asperger publishes a scientific study of children with autism. He notices parents of some of the children have similar personalities or eccentricities, and regards this as evidence of a genetic link. He is also credited with describing a higher-functioning form of autism, later called Asperger’s syndrome. But it isn’t until 1977 that Susan Folstein and Michael Rutter publish a study of twins and autism finding that genetics are an important risk factor for autism. In the 1970’s, English psychiatrist, Lorna Wing proposes the concept of autism spectrum disorders. She identifies the “triad of impairment,” which includes three areas: social interaction, communication, and imagination. The data gathering method used by Wing and her colleagues formed the belief that autism was a spectrum, rather than clearly differentiated disorders. Dr. Wing became involved in researching developmental disorders, particularly autism, in 1959 when she discovered that her daughter Susie was autistic.

The Education for All Handicapped Children Act was signed into law by President Gerald Ford in 1975, to protect the rights and meet the educational needs of children with disabilities. Up until this time, most children with disabilities were denied a public education in the United States. This law guarantees a free, appropriate public education, or FAPE, to each child with a disability in every state across the country. In 1990 Autism is included as a disability category in the Individuals with Disabilities Education Act (IDEA). Public schools begin identifying children on the spectrum and offering them services.

Temple Grandin helped break down years of shame and stigma in 1986 when she was one of the first adults to publicly disclose that she was autistic. Her book, Emergence: Labeled Autistic gave readers an accurate look at life as an autistic female. Bernard Rimland wrote "Temple's ability to convey to the reader her innermost feelings and fears, coupled with her capacity for explaining mental processes will give the reader an insight into autism that very few have been able to achieve." Prior to this, there were very few writings about autism by autistics. Now you can easily find books and scholarly writings about autism by autistics.