CHAPTER 1
What Is Autism?
This chapter shall commence with a description of autism obtained by the most credible sources on earth. Following that will be a discussion of what it's like to live with autism and a first-hand account of how differently we perceive the world.
According to the Centers for Disease Control (CDC) in Atlanta, Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication, and behavioral challenges. Often there is nothing about how a person with ASD looks that sets him or her apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger's syndrome. These conditions are now all included in the term autism spectrum disorder. The Autism Society of America goes into more detail on the definition of autism, as follows:
Autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person's ability to communicate and interact with others. ASD is defined by a certain set of behaviors and is a spectrum condition that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness, early diagnosis/intervention, and access to appropriate services/supports lead to significantly improved outcomes. Some of the behaviors associated with autism include delayed language learning; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills; and sensory sensitivities. Again, a person on the spectrum might follow many of these behaviors or just a few, or many others besides. The diagnosis of autism spectrum disorder is applied based on an analysis of all behaviors and their severity.
Signs of autism will begin before a child reaches his third birthday and will remain with him throughout his entire life. Symptoms can lessen as the individual gets older, to the point that it's barely recognized as an adult. However, the person will still struggle with many of the issues as an adult, as they never go completely away. Many on the autism spectrum have extraordinary gifts beyond what ordinary people have that bring much happiness and fulfillment to them.
Some children might show signs or symptoms of autism within the first few months of life; while in others, symptoms might not surface until they are twenty-four months old. Some children might appear to develop normally until age two, then suddenly stop gaining new skills and lose the ones they have. There is no exact pattern and development, which is why it is called a spectrum.
The CDC has lists of signs and symptoms for various areas that are shown below. It is not unusual for parents to see these lists and suddenly realize that their child fits the picture, or for an adult suddenly to realize she is on the spectrum, never understanding why she was so different.
Possible Red Flags
A person with ASD might:
• Not respond to her name by 12 months of age
• Not point at objects to show interest (point at an airplane flying over) by 14 months
• Not play "pretend" games (pretend to "feed" a doll) by 18 months
• Avoid eye contact and want to be alone
• Have trouble understanding other people's feelings or talking about her own feelings
• Have delayed speech and language skills
• Repeat words or phrases over and over (echolalia)
• Give unrelated answers to questions
• Get upset by minor changes
• Have obsessive interests
• Flap her hands, rock her body, or spin in circles
• Have unusual reactions to the way things sound, smell, taste, look, or feel
Social issues are one of the main challenges associated with ASD. These difficulties can cause serious problems in these people's everyday lives.
Examples of social issues related to ASD:
• Does not respond to his name by 12 months of age
• Avoids eye contact
• Prefers to play alone
• Does not share interests with others
• Only interacts to achieve a desired goal
• Has flat or inappropriate facial expressions
• Does not understand personal space boundaries
• Avoids or resists physical contact
• Is not comforted by others during distress
• Has trouble understanding other people's feelings or talking about his own feelings
Every parent wants a perfect child. Parents typically spend time socializing with other parents of children the same age to exchange stories of their child's progress. I'm all too familiar with this event; it occurs regularly in my own workplace. As I listen to my colleagues sharing stories about their child's progress, I wonder to myself how each of them would act if their child was diagnosed with autism and was four years old and still not talking or reaching any of the "normal" development milestones. People take for granted that they will have a "normal" child.
By a child's first birthday, she is typically very interested in people and the world around her. An autistic child might not have any interest in others or the world around her. This is the beginning of a long journey of learning how to interact with people and navigate life in general.
Communication
One of the biggest difficulties someone with ASD will face is communication. Not only will an autistic individual have difficulties communicating, but he will also face difficulty in understanding others in both verbal and non-verbal forms of communication. For many, this will improve over time, but for many it will not.
Each person with ASD has different communication skills. Some people can speak well, while others can't speak at all or only very little. About 40% of children with an ASD do not talk at all. About 25% to 30% of children with ASD have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood.
Examples of communication issues related to ASD:
• Demonstrates delayed speech and language skills
• Repeats words or phrases over and over (echolalia)
• Reverses pronouns (e.g., says "you" instead of "I")
• Gives unrelated answers to questions
• Does not point or respond to pointing
• Uses few or no gestures (e.g., does not wave goodbye)
• Talks in a flat, robot-like, or sing-song voice
• Does not pretend in play (e.g., does not pretend to "feed" a doll)
• Does not understand jokes, sarcasm, or teasing
The National Institute of Child Health and Human Development (NICHD) lists five behaviors that warrant further evaluation:
• Does not babble or coo by 12 months
• Does not gesture (point, wave, grasp) by 12 months
• Does not say single words by 16 months
• Does not say two-word phrases on his or her own by 24 months
• Has any loss of any language or social skill at any age
While any of these symptoms do not necessarily indicate a child has autism, occurrence of them warrants an evaluation by a multidisciplinary team. This team would include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or other professional knowledgeable about autism.
Unusual Interests and Behaviors
Many people with ASD demonstrate unusual interest or behaviors.
Examples of unusual interests and behaviors related to ASD:
• Lines up toys or other objects
• Plays with toys the same way every time
• Likes parts of objects (e.g., wheels)
• Is very organized
• Gets upset by minor changes
• Has obsessive interests
• Has to follow certain routines
• Flaps hands, rocks body, or spins self in circles
People with ASD typically thrive on routine. Any little change in their routine can greatly upset them to the point of having a meltdown. They can have unusual reactions to touch, sounds, smells, tastes, and textures. This is due to the fact that their sensory levels are extremely intense compared to others.
Another list from the CDC includes the following.
Other Symptoms
Some people with ASD have other symptoms. These might include:
• Hyperactivity (very active)
• Impulsivity (acting without thinking)
• Short attention span
• Aggression
• Causing self-injury
• Temper tantrums
• Unusual eating and sleeping habits
• Unusual mood or emotional reactions
• Lack of fear or more fear than expected
• Unusual reactions to the way things sound, smell, taste, look, or feel
Children with ASD develop at different rates and in different areas. It is not unusual for an autistic child to progress very rapidly in one particular area, such as mathematics, yet be far behind in simple areas. A child might become a computer whiz yet be unable to socialize with other children her own age.
Adults with ASD may function at various ranges on the spectrum. Many adults over 30 are diagnosed late in life. This is due to the fact that much knowledge on the subject was not translated into the United States until 1994. Until that point, those who are now adults had gone under the radar, either getting incorrect diagnoses or no diagnosis at all.
I personally did not get diagnosed until the age of fifty, and that was only by accident. A co-worker's son had just been diagnosed with Asperger's Syndrome. When she handed me a few papers with information about Asperger's, the top sheet showed a list stating that if you have ten out of twelve of the symptoms listed, you have Asperger's. I had twelve out of twelve. That night I stopped off at the local book store and purchased every book on the shelf about Asperger's Syndrome. Once I got home, the first one that caught my eye was by Dr. Tony Attwood, The Complete Guide to Asperger's Syndrome.
I stayed up all night reading it, crying most of the way, and by the dawn's early light I knew without a doubt that I had Asperger's. Three weeks later, I had my formal diagnosis from a neuropsychologist. That testing occurred over a three-day period with a series of psychological tests which took about 3 to 4 hours on each of those days, followed by a very lengthy visit with the neuropsychologist.
Until now, the main focus of most literature has been on autistic children. Finally, people are recognizing there are autistic adults, literally millions of them, and millions more will come as today's autistic children grow up to become adults.
Sadly, it is not uncommon for autistic adults to avoid going for routine health care due to the sensory issues involved, unwanted touching, and lack of understanding by healthcare providers. What typically happens is that these adults neglect a problem until it reaches a level of emergency. By that point, not only is the issue at a critical point, but it is also compounded by the massive sensory overload of the emergency room, and an emotional meltdown may occur. After sitting in a loud, brightly lit waiting area, with TVs typically going, multiple other people sitting in close proximity, the smells of cleaning fluids and disinfectants, and phones endlessly ringing, the autistic individual will be at his wits' end by the time his name is called to be taken into an exam room. Once in a room waiting to be seen by a nurse or physician, the person might be at a point of breakdown. This could seriously affect the way he processes whatever information is provided for the direction of his treatment and follow-up care. By taking simple measures, the environment in healthcare facilities can be changed to accommodate autistic patients. Even small changes can go a long way. These changes will be discussed at length later in the book.
Autism occurs in every race and at every socioeconomic level. It has no borders, and is found in every country around the globe. Boys are diagnosed more often than females. While the individual will never be "cured" of autism, it generally gets better over time. In today's world, it is typical that, once a child gets diagnosed with autism, intervention immediately begins. Early intervention is the key to enabling the individual to become the most that he can be. Some people, like me, never had any kind of intervention. What I did have, however, was a mother who devoted her entire life to me, and her unwavering support enabled me to achieve all that I have accomplished in my lifetime thus far. This factor will also be discussed later in the book.
Despite our different ways, always remember that we are different, but not less. Embrace your autistic patients, for so many of us have gifts to enrich this world. We also want to be loved, to love, and have relationships, just like everyone else.
Having gone the first fifty years of my life undiagnosed puts me in a very different category from the young people of today who get diagnosed in early childhood. Aside from the fact that I didn't receive any kind of intervention, I spent all those years wondering why I was so different, why I never fit in, why I was unable to make or keep any friends, and why I had a myriad of sensory issues that no one else seemed to have. I always felt like I was on the outside of life, looking in at everyone else, wondering why I couldn't be like them.
After getting diagnosed, my whole life changed in a very positive way. I was greatly relieved to finally understand why I was like this and that I wasn't alone any longer. A common theme to autistic individuals is loneliness. Despite the challenges I faced all throughout my life, I would not want to have known sooner about my autism. I see so many autistic individuals who do get diagnosed early in life, and that then becomes their focus in a very negative way. At this point in my life, my goal is to change the world's view of autism. I also want to help healthcare providers understand autism and to show them ways they can improve autistic patients' experiences in obtaining their health care. That will enable the autistic population to readily seek not only urgent care, but also to feel comfortable going for routine health screenings and maintenance.
CHAPTER 2
Demonstration Activity of Autism
I am very lucky to have had Dr. Stephen Shore as a close friend. He is best known as the Globetrotting Autism Ambassador! He had been diagnosed at age two with autism, and it was suggested to his parents that they should consider institutionalization as the best place for him. Thankfully, his parents didn't listen to those professionals. Early intervention was immediately started upon Stephen's diagnosis, much by his own family.
Stephen earned a PhD and is a professor at Adelphi University for Special Education. He also focuses on research for matching best practice to the needs of people with autism. In addition to working with autistic children and talking about life on the autism spectrum, Stephen is internationally renowned for his presentations, consultations, and writings on lifespan issues pertinent to education, relationships, employment, advocacy, and disclosure.
I feel that, in order for the reader of this book to best understand autism, participating in a simulation is an excellent way to get a better understanding of how we perceive the world and the massive sensory overload that goes with autism. What we experience is far beyond the activity shown below, but by engaging in this exercise, you will at least gain some understanding (and compassion, I hope!) of this very different way of life. You will need each group to have five people.
Once you have completed the Sensory Overload activity, you will probably have a very different perspective of your next autistic patient! Most people who participate in the activity want to simply get away from all the stimuli. Lucky for you, you can simply run away from it! An autistic person can't run away from it, and it's a way of life for us 24/7, 365 days a year. I often describe it as living in Dolby surround sound. Have you ever walked into a store that sells TVs, and they have like fifty TVs all playing at the same time? That's the magnitude of sensory input we experience daily.
