E
Elizabeth M. Ellis, Ph.D.
Guest
Let’s Get Real About What Autism Is — A Brief History
When I was a senior in college, 1970–1971, I was fortunate to have a part- time job typing psychiatric evaluations on the children’s unit of Shands Medical Center — the teaching hospital of the University of Florida. (It was a dream job compared to the previous one working the late shift at a con-venience store where I sold munchies to cannabis-infused hippies and worried about being held up at gunpoint).
When I took breaks, I wandered down to the Autism Unit on the first floor to observe. Autism, at that time, was defined as a subcategory of Childhood Schizophrenia, according to the prevailing handbook, the DSM II (Diagnostic and Statistical Manual, published by the American Psychiatric Association). These children were unresponsive to people around them, engaged in repetitive body movements such as rocking, arm flapping, and finger twiddling. They stared fixedly at objects such as lightbulbs. If they picked up a toy, they didn’t play with it but banged it on the table just to hear the sound it made — over and over. Most had no speech, no form of meaningful communication. The term “autistic” meant isolated, in a world of their own.
Though the reports that I typed that were written by the psychiatrists upstairs were full of Freudian references — a school of thought thoroughly repudiated by research by 1970 — the staff downstairs, the psychologists, were using the newest model of behavior change, behavior modification, a la B.F. Skinner. They were giving the child positive rewards for appropriate behavior and touching the child’s leg with an electric cattle prod as an aversive consequence for behaviors like self-stimming — slapping and scratching themselves. This was pioneered by psychologist Ivar Lovaas, and was called aptly, the Lovaas Method.
We view this as abusive today, but at that time, it was cutting edge. (In fact, the Freudian psychiatrists in those days were theorizing that autism was caused by “refrigerator mothers” — mothers who rejected their infants. Aren’t we glad that that one went by the wayside?) The use of the cattle prod with the Lovaas Method was subject to much criticism and was dropped in the 70’s. But the use of behavior modification with autistic children goes on today, under the term “applied behavior analysis.”
By 1975, I was in the third rotation of my two year internship, as part of my requirement for the Ph.D. I was doing family therapy at a suburban clinic, under supervision, with an adolescent boy, Bob Smite (not his real name). Bob paced around the room, refusing to sit down, rocking back and forth, or sometimes from side to side, talking about toasters. Toasters were his most fascinating subject, and he went on incessantly about toasters, unaware that others were tired of toaster-talk, were trying to get him to change the subject. It was difficult for the family to take Bob out in public because he was prone to agitated, violent meltdowns if something didn’t suit him. But it wasn’t Bob we were most concerned about. It was Bob’s brother, Dan, a handsome and popular athlete, who was embarrassed by Bob, ashamed of him. The family couldn’t go anywhere without Bob ruining the outing. Dan had punched him a few times when Bob wouldn’t shut up about toasters. He said he was having thoughts of killing Bob. That was Autism — and the family that lived with it every day.
In 1977, jobs for newly graduated Ph.D.’s in clinical psychology were scarce. My unemployment had run out, and I needed employment. I was ready to take any job and filled an opening on the Severe/Profound Unit of a state hospital here in Georgia for the Mentally Retarded (the term at that time). It was a major teaching facility covering 150 acres of green rolling hills and spreading shade trees. I evaluated probably 150 residents over my 10 months there. A good percentage of them had autistic features. They rocked back and forth in their wheelchairs, stared at their fingers, made no eye contact with the staff, did not respond to their name. They were “self-stimming” (self-stimulating) quite a bit. Not only was I tasked with evaluating their level of impairment but with coming up with treatment programs to make them do ordinary things like take food by mouth, use the toilet, or stop harming themselves. We used the term Mental Retardation with Autistic Features.
The DSM III, in 1980, separated Autism from Childhood Schizophrenia and renamed it Infantile Autism because the disorder appeared before the age of 30 months. The diagnostic features continued to be those that I saw as a student on the inpatient unit at Shands and at the state hospital in Georgia. About 1 in 10,000 children were diagnosed with autism in 1980. (Make a note of that number.)
In 1987, after I had finished my Ph.D. and been in private practice for 10 years, the DSM III-R (Revised) changed the title of the diagnosis to Autistic Disorder and described autism as “a pervasive lack of responsiveness to other people.” The term Infantile was dropped because autism is lifelong and can characterize children, adolescents, and adults.
The diagnostic criteria were: (A) significant impairment in social functioning, (B) significant impairment in communication, © restricted repetitive and stereotyped patterns of behavior, interests, and activities (i.e., over focus on one interest that is abnormal, inflexible adherence to meaningless routines, repetitive movements like hand or finger flapping, body rocking); (D) onset prior to age 3.
In the 1980’s, I was starting out in practice, and I was sent out to a Head Start Center to evaluate a boy in a pre-school program there. The staff all gushed over what a “genius” he was. This very unusual boy, only 4 years old, would sit down and reproduce with paper and pencil various Interstate Highway exit signs from around the perimeter of Atlanta. This was indeed remarkable. However, he had no speech, did not communicate with anyone in the center. He made no eye contact with peers, had no interest in playing with them. He could not respond to, “Draw a circle for me. Draw a square.” He only drew highway signs. “No,” I had to tell them. “He is not a genius. He is severely Autistic.”
By the early 1990’s autism was diagnosed in about 3.3 to 3.6 children per 10,000. As with many mental disorders, clinicians get together at conferences and discuss cases they are working with in their practice that don’t quite fit the standard diagnosis. Then surveys are sent out, field trials are conducted, data is gathered, and the terminology changes. By 1994, the DSM IV included a new subcategory of Autistic Disorder, Asperger’s Disorder. This term was given to people who were “high functioning,” i.e., they had speech and possibly a high level of skill in a scientific, technical, or musical field. The diagnostic criteria of: (A) significant impairment in social functioning, and (B) restricted, repetitive interests and movements still applied. They did not exhibit a significant impairment in communi-cation and were not intellectually disabled. Like all psychiatric disorders, a final criterion was “clinically significant impairment in social, occupational, or other important areas of functioning.”
Though they had speech, it was not normal. Their speech was “odd”: atonal, or flat, or repetitive, or overly loud. They had poor social skills, not just social awkwardness or anxiety, but a lack of interest in social con-nections. They stood too close or too far away, rocked back and forth, and didn’t make eye contact with others, or perhaps stared at the other person’s ear. They seemed to relate better to objects and data. The public grabbed onto this term because they recognized this kind of person in characters like “Raymond” (Dustin Hoffman) in the movie, Rain Man, or “Spock” on Star Trek (though I recall Spock making eye contact and not having odd speech).
Now, Autism had moved from being a term for peculiar and profoundly mentally retarded children and adults in the back wards of state hospitals, or at least those who could not live independently and hold down a job, to a term that described television and movie stars. It became — shall we say — “popular.” The DSM IV TR (Text Revision) came out in 2000, had grown to 934 pages long and was so heavy it could be useful as a doorstop, but the terminology remained much the same. The CDC reported that about 67 out of every 10,000 children were being diagnosed with autism.
In 2013, the DSM V came out, and we had to learn a whole new set of code numbers for the diagnoses, as well as consider whether we could afford the cost of over $150.00 for the book. (It was a good idea to wait, because the DSM V TR came out in 2022, weighing in at $170 and over 1,142 pages long. I settled for the Pocket Guide, $56 and a mere 394 pages long). CDC data reported that the rate of diagnosis of autistic disorders had increased to 147 per 10,000 children.
DSM V introduced major changes to how clinicians evaluate autism. By 2013, it was increasingly clear that there was no sharp dividing line between Autistic Disorder and Asperger’s Disorder. Some children, and even adults, had symptoms and areas of functional impairment that were in a gray area between the two diagnoses. So, the wise behavioral scientists who develop the DSM came up with the all-encompassing term, Autism Spectrum Disorder. Now, we have a large tent that takes in a variety of children/adults with similar deficits (DSM word, not mine), and we can view them on a spectrum from very severe at one end of the scale to mild at the other end.
Today, in 2025, clinicians are still guided by the criteria in the DSM V TR.
A. Persistent deficits in social communication and social interaction across multiple settings. These deficits may be seen in abnormal social approach toward others, absence of back and forth conversation, failure to initiate or respond to social interactions. It can also be seen in the form of deficits (there’s that word again) in non-verbal communication, such as abnor-malities in body language or eye contact, lack of facial expression. It is also seen in deficits in relating to others — inability to make friends or a lack of interest in peers.
B. Restricted, or repetitive patterns of behavior as described above — repetitive, meaningless body movements, manipulating an object in a repetitive and meaningless way, talking excessively and repetitively about a meaningless topic.
C. Symptoms must be present in the early developmental period (first five years), or “may be masked by learned strategies later in life” (I wonder about this one. Given A. and B., how could it be hidden?)
D. Symptoms must cause “clinically significant impairment in social, occupational, or other functioning.”
Intellectual disability (formerly called mental retardation) characterized the majority, perhaps 70%, of children diagnosed with Autistic Disorder in the 1970’s. Now, with the broader definition, the figure is around 30–40% and describes those with ASD that is Severe.
I have evaluated children in my office with Severe ASD.
I remember a boy of about 5 who came in with his mother, holding her cell phone to his ear and playing a home improvement video on YouTube, over and over. He had no meaningful speech, made no eye contact, did not look around the room and explore the cornucopia of interesting toys around him. Mother complained he didn’t do anything all day but play that video. I asked her if she ever took the phone away, if she tried to get his attention, tried to speak to him. She said no, he didn’t want to give her the phone, and she didn’t want to upset him.
Another case was a little girl, perhaps four years old, who came in with her mother, holding a raggedy blanket. She sat on the floor, made whining noises, fingered the blanket she held, rocked back and forth. No speech, no eye contact, no interest in her surroundings.
These are children with “Severe Intellectual Disability” and “ASD, severe.” Their stories are heartbreaking, tragic. They are the face of what “Autism” has signified for seasoned clinicians like me for more than 55 years. Not all the children I’ve evaluated for ASD were in the “Severe” category. I recall seeing an Asian boy who came in accompanied by his parents who were both computer engineers. He was about 8 years old and could read well, but he was unable to learn in school, unable to respond to the teacher or his peers. He had read a chapter on Napoleon a few weeks prior to the appointment and came in with the book tucked under his arm, talking incessantly, non-meaningfully, about Napoleon. It was not a conversation but a repetitive recitation about facts relating to Napoleon. He had no idea about the significance of Napoleon’s place in European history, no curiosity, no capacity for abstract analysis. The parents said he had been like this for weeks, and they couldn’t get him to stop and change subjects. He, too, was heartbreaking.
These kids are a far cry from our trendy flirtation with terms like “on the spectrum,” as if it’s something benign like the color of the year by Pantone. Even in cases of “high functioning” ASD, the term deficits (not differences) still applies.
Current estimates by the CDC, in 2025, are that about 320 children out of every 10,000 will be diagnosed with some level of autistic disorder. This has become a very big tent indeed — an increase of 320 fold over rates diagnosed in the 1980’s. (Remember that number I asked you to make a note of above? 1 out of 10,000 in 1980.) That’s about 1 out of every 31 children.
No other psychiatric diagnosis has seen such an increase in diagnostic rates. Has the tent become too big? Are we ushering all kinds of children and adults into this tent because they are simply shy? Socially awkward? Quirky? Eccentric? Because people want this diagnosis? Why do people want to get inside this tent?
More about this in future posts.
Elizabeth M. Ellis, Ph.D., is a clinical psychologist who has been in practice in the Atlanta area since 1980. She is the author of: Raising A Responsible Child (Birchlane), Divorce Wars: Interventions With Families in Conflict (Amer. Psych. Assn.), and Raising Your ADHD Child With Love, Laughter, and Neuroscience (forthcoming).
Continue reading...
When I was a senior in college, 1970–1971, I was fortunate to have a part- time job typing psychiatric evaluations on the children’s unit of Shands Medical Center — the teaching hospital of the University of Florida. (It was a dream job compared to the previous one working the late shift at a con-venience store where I sold munchies to cannabis-infused hippies and worried about being held up at gunpoint).
When I took breaks, I wandered down to the Autism Unit on the first floor to observe. Autism, at that time, was defined as a subcategory of Childhood Schizophrenia, according to the prevailing handbook, the DSM II (Diagnostic and Statistical Manual, published by the American Psychiatric Association). These children were unresponsive to people around them, engaged in repetitive body movements such as rocking, arm flapping, and finger twiddling. They stared fixedly at objects such as lightbulbs. If they picked up a toy, they didn’t play with it but banged it on the table just to hear the sound it made — over and over. Most had no speech, no form of meaningful communication. The term “autistic” meant isolated, in a world of their own.
Though the reports that I typed that were written by the psychiatrists upstairs were full of Freudian references — a school of thought thoroughly repudiated by research by 1970 — the staff downstairs, the psychologists, were using the newest model of behavior change, behavior modification, a la B.F. Skinner. They were giving the child positive rewards for appropriate behavior and touching the child’s leg with an electric cattle prod as an aversive consequence for behaviors like self-stimming — slapping and scratching themselves. This was pioneered by psychologist Ivar Lovaas, and was called aptly, the Lovaas Method.
We view this as abusive today, but at that time, it was cutting edge. (In fact, the Freudian psychiatrists in those days were theorizing that autism was caused by “refrigerator mothers” — mothers who rejected their infants. Aren’t we glad that that one went by the wayside?) The use of the cattle prod with the Lovaas Method was subject to much criticism and was dropped in the 70’s. But the use of behavior modification with autistic children goes on today, under the term “applied behavior analysis.”
By 1975, I was in the third rotation of my two year internship, as part of my requirement for the Ph.D. I was doing family therapy at a suburban clinic, under supervision, with an adolescent boy, Bob Smite (not his real name). Bob paced around the room, refusing to sit down, rocking back and forth, or sometimes from side to side, talking about toasters. Toasters were his most fascinating subject, and he went on incessantly about toasters, unaware that others were tired of toaster-talk, were trying to get him to change the subject. It was difficult for the family to take Bob out in public because he was prone to agitated, violent meltdowns if something didn’t suit him. But it wasn’t Bob we were most concerned about. It was Bob’s brother, Dan, a handsome and popular athlete, who was embarrassed by Bob, ashamed of him. The family couldn’t go anywhere without Bob ruining the outing. Dan had punched him a few times when Bob wouldn’t shut up about toasters. He said he was having thoughts of killing Bob. That was Autism — and the family that lived with it every day.
In 1977, jobs for newly graduated Ph.D.’s in clinical psychology were scarce. My unemployment had run out, and I needed employment. I was ready to take any job and filled an opening on the Severe/Profound Unit of a state hospital here in Georgia for the Mentally Retarded (the term at that time). It was a major teaching facility covering 150 acres of green rolling hills and spreading shade trees. I evaluated probably 150 residents over my 10 months there. A good percentage of them had autistic features. They rocked back and forth in their wheelchairs, stared at their fingers, made no eye contact with the staff, did not respond to their name. They were “self-stimming” (self-stimulating) quite a bit. Not only was I tasked with evaluating their level of impairment but with coming up with treatment programs to make them do ordinary things like take food by mouth, use the toilet, or stop harming themselves. We used the term Mental Retardation with Autistic Features.
The DSM III, in 1980, separated Autism from Childhood Schizophrenia and renamed it Infantile Autism because the disorder appeared before the age of 30 months. The diagnostic features continued to be those that I saw as a student on the inpatient unit at Shands and at the state hospital in Georgia. About 1 in 10,000 children were diagnosed with autism in 1980. (Make a note of that number.)
In 1987, after I had finished my Ph.D. and been in private practice for 10 years, the DSM III-R (Revised) changed the title of the diagnosis to Autistic Disorder and described autism as “a pervasive lack of responsiveness to other people.” The term Infantile was dropped because autism is lifelong and can characterize children, adolescents, and adults.
The diagnostic criteria were: (A) significant impairment in social functioning, (B) significant impairment in communication, © restricted repetitive and stereotyped patterns of behavior, interests, and activities (i.e., over focus on one interest that is abnormal, inflexible adherence to meaningless routines, repetitive movements like hand or finger flapping, body rocking); (D) onset prior to age 3.
In the 1980’s, I was starting out in practice, and I was sent out to a Head Start Center to evaluate a boy in a pre-school program there. The staff all gushed over what a “genius” he was. This very unusual boy, only 4 years old, would sit down and reproduce with paper and pencil various Interstate Highway exit signs from around the perimeter of Atlanta. This was indeed remarkable. However, he had no speech, did not communicate with anyone in the center. He made no eye contact with peers, had no interest in playing with them. He could not respond to, “Draw a circle for me. Draw a square.” He only drew highway signs. “No,” I had to tell them. “He is not a genius. He is severely Autistic.”
By the early 1990’s autism was diagnosed in about 3.3 to 3.6 children per 10,000. As with many mental disorders, clinicians get together at conferences and discuss cases they are working with in their practice that don’t quite fit the standard diagnosis. Then surveys are sent out, field trials are conducted, data is gathered, and the terminology changes. By 1994, the DSM IV included a new subcategory of Autistic Disorder, Asperger’s Disorder. This term was given to people who were “high functioning,” i.e., they had speech and possibly a high level of skill in a scientific, technical, or musical field. The diagnostic criteria of: (A) significant impairment in social functioning, and (B) restricted, repetitive interests and movements still applied. They did not exhibit a significant impairment in communi-cation and were not intellectually disabled. Like all psychiatric disorders, a final criterion was “clinically significant impairment in social, occupational, or other important areas of functioning.”
Though they had speech, it was not normal. Their speech was “odd”: atonal, or flat, or repetitive, or overly loud. They had poor social skills, not just social awkwardness or anxiety, but a lack of interest in social con-nections. They stood too close or too far away, rocked back and forth, and didn’t make eye contact with others, or perhaps stared at the other person’s ear. They seemed to relate better to objects and data. The public grabbed onto this term because they recognized this kind of person in characters like “Raymond” (Dustin Hoffman) in the movie, Rain Man, or “Spock” on Star Trek (though I recall Spock making eye contact and not having odd speech).
Now, Autism had moved from being a term for peculiar and profoundly mentally retarded children and adults in the back wards of state hospitals, or at least those who could not live independently and hold down a job, to a term that described television and movie stars. It became — shall we say — “popular.” The DSM IV TR (Text Revision) came out in 2000, had grown to 934 pages long and was so heavy it could be useful as a doorstop, but the terminology remained much the same. The CDC reported that about 67 out of every 10,000 children were being diagnosed with autism.
In 2013, the DSM V came out, and we had to learn a whole new set of code numbers for the diagnoses, as well as consider whether we could afford the cost of over $150.00 for the book. (It was a good idea to wait, because the DSM V TR came out in 2022, weighing in at $170 and over 1,142 pages long. I settled for the Pocket Guide, $56 and a mere 394 pages long). CDC data reported that the rate of diagnosis of autistic disorders had increased to 147 per 10,000 children.
DSM V introduced major changes to how clinicians evaluate autism. By 2013, it was increasingly clear that there was no sharp dividing line between Autistic Disorder and Asperger’s Disorder. Some children, and even adults, had symptoms and areas of functional impairment that were in a gray area between the two diagnoses. So, the wise behavioral scientists who develop the DSM came up with the all-encompassing term, Autism Spectrum Disorder. Now, we have a large tent that takes in a variety of children/adults with similar deficits (DSM word, not mine), and we can view them on a spectrum from very severe at one end of the scale to mild at the other end.
Today, in 2025, clinicians are still guided by the criteria in the DSM V TR.
A. Persistent deficits in social communication and social interaction across multiple settings. These deficits may be seen in abnormal social approach toward others, absence of back and forth conversation, failure to initiate or respond to social interactions. It can also be seen in the form of deficits (there’s that word again) in non-verbal communication, such as abnor-malities in body language or eye contact, lack of facial expression. It is also seen in deficits in relating to others — inability to make friends or a lack of interest in peers.
B. Restricted, or repetitive patterns of behavior as described above — repetitive, meaningless body movements, manipulating an object in a repetitive and meaningless way, talking excessively and repetitively about a meaningless topic.
C. Symptoms must be present in the early developmental period (first five years), or “may be masked by learned strategies later in life” (I wonder about this one. Given A. and B., how could it be hidden?)
D. Symptoms must cause “clinically significant impairment in social, occupational, or other functioning.”
Intellectual disability (formerly called mental retardation) characterized the majority, perhaps 70%, of children diagnosed with Autistic Disorder in the 1970’s. Now, with the broader definition, the figure is around 30–40% and describes those with ASD that is Severe.
I have evaluated children in my office with Severe ASD.
I remember a boy of about 5 who came in with his mother, holding her cell phone to his ear and playing a home improvement video on YouTube, over and over. He had no meaningful speech, made no eye contact, did not look around the room and explore the cornucopia of interesting toys around him. Mother complained he didn’t do anything all day but play that video. I asked her if she ever took the phone away, if she tried to get his attention, tried to speak to him. She said no, he didn’t want to give her the phone, and she didn’t want to upset him.
Another case was a little girl, perhaps four years old, who came in with her mother, holding a raggedy blanket. She sat on the floor, made whining noises, fingered the blanket she held, rocked back and forth. No speech, no eye contact, no interest in her surroundings.
These are children with “Severe Intellectual Disability” and “ASD, severe.” Their stories are heartbreaking, tragic. They are the face of what “Autism” has signified for seasoned clinicians like me for more than 55 years. Not all the children I’ve evaluated for ASD were in the “Severe” category. I recall seeing an Asian boy who came in accompanied by his parents who were both computer engineers. He was about 8 years old and could read well, but he was unable to learn in school, unable to respond to the teacher or his peers. He had read a chapter on Napoleon a few weeks prior to the appointment and came in with the book tucked under his arm, talking incessantly, non-meaningfully, about Napoleon. It was not a conversation but a repetitive recitation about facts relating to Napoleon. He had no idea about the significance of Napoleon’s place in European history, no curiosity, no capacity for abstract analysis. The parents said he had been like this for weeks, and they couldn’t get him to stop and change subjects. He, too, was heartbreaking.
These kids are a far cry from our trendy flirtation with terms like “on the spectrum,” as if it’s something benign like the color of the year by Pantone. Even in cases of “high functioning” ASD, the term deficits (not differences) still applies.
Current estimates by the CDC, in 2025, are that about 320 children out of every 10,000 will be diagnosed with some level of autistic disorder. This has become a very big tent indeed — an increase of 320 fold over rates diagnosed in the 1980’s. (Remember that number I asked you to make a note of above? 1 out of 10,000 in 1980.) That’s about 1 out of every 31 children.
No other psychiatric diagnosis has seen such an increase in diagnostic rates. Has the tent become too big? Are we ushering all kinds of children and adults into this tent because they are simply shy? Socially awkward? Quirky? Eccentric? Because people want this diagnosis? Why do people want to get inside this tent?
More about this in future posts.
Elizabeth M. Ellis, Ph.D., is a clinical psychologist who has been in practice in the Atlanta area since 1980. She is the author of: Raising A Responsible Child (Birchlane), Divorce Wars: Interventions With Families in Conflict (Amer. Psych. Assn.), and Raising Your ADHD Child With Love, Laughter, and Neuroscience (forthcoming).
Continue reading...
