Adults with "mild" autism can have problems equal to those with severe autism (study)

stranger said:

Studies like this also explain why the terms "mild", "moderate" and "severe" aren't good ways to describe Autism. They (as I mentioned in a previous thread) ignore the difficulties people with "Mild" Autism have and ignore the talents those with "Severe" Autism have.

Yes, here is the thread and I made my views known on that too:

http://community.autism.org.uk/discussions/health-wellbeing/diagnosis-assessment/whats-mild-autism

This professional has some enlightening views on it too:

Bill Nason, MS, LLP, Limited License Psychologist, Behavior Specialist.  Here you can find more information about him:
https://www.facebook.com/autismdiscussionpage/info

https://www.facebook.com/autismdiscussionpage

"Labeling - High and low functioning
We start this process when we seek a diagnosis to begin with. For parents with young children (1-3 years of age) who are seeking a diagnosis, I often recommend that they don't wait for the diagnosis. Forget about the label and begin supporting whatever developmental delays the child is showing. However, the diagnosis of "autism" doesn't say much about the degree of disability. There is too much variability in strengths and skills. When a diagnosis is not descriptive enough, people look for more specific ways to categorize the severity of disability. Not that high and low functioning are that descriptive.

In the medical field, diagnoses are categorized by symptoms and how much they impact the person's daily "functioning." It is the impact the disability has on the person's "functioning" that drives a lot of the services. For the most part, "high functioning" usually refers to good expressive speech, fair to good receptive understanding, and fair ability to function independently in their daily settings. "Lower functioning" is usually reserved to very limited verbal skills, often nonverbal, lower intellectual abilities, extreme difficulty understanding daily instructions, and needs a lot of assistance in doing their daily routine.

The confusion among parents and professionals is between "level of functioning" (intellectual ability), and "severity of autism." I know of children who are labeled "high functioning" who have severe autistic traits (very rigid/inflexible thinking, very resistant to change and uncertainty, and meltdown over simple snags in their day.) However, they are considered "high functioning" because they are very verbal, get good grades in school, and can do personal care independently. I have also met children who are considered "low functioning" because they are nonverbal, have difficulty with performing personal care, and difficulty with academics, but who's autism traits are less severe; more flexible in their thinking, handle daily transitions easier, can reference others better, and have fewer meltdowns. So, level of functioning doesn't also correlate with the severity of the autism. Just because a child is labeled “high functioning”, doesn’t mean he doesn’t have severe autism. Many people confuse the two, which can often exclude some from treatment, or lower the expectations for others.

We also have to be very careful when we equate “lack of verbal skills” with low intellectual abilities. The single largest characteristic used in labeling the child “high vs. low functioning” is the degree of spoken language they have. This also can be very deceiving! Although there is a strong correlation, there are many children who are nonverbal that have much higher cognitive abilities than we first recognize. They simply cannot express it in our customary ways. Once we find them a “voice”, whether through pictures, written words, manual signs, etc, we find they have much stronger cognitive skills, than we had anticipated. It isn’t until we find the right medium of expression do we begin to understand what they truly know. So, our best bet is to always assume “competence” to learn, if the right supports and teaching style can be identified. Don’t get too hung up on “low vs. high functioning” labels.

Low/High Functioning vs. Severe/Mild Autism
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected).

This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis.

Making matters even more complicated, is the variable of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving.

The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses."

It helped me to clarify in my own mind, why high-functioning is a ridiculous descriptor.  It would be better to just say autism with intellectual impairment/learning difficulty and autism for those without such an impairment.

stranger said:

Studies like this also explain why the terms "mild", "moderate" and "severe" aren't good ways to describe Autism. They (as I mentioned in a previous thread) ignore the difficulties people with "Mild" Autism have and ignore the talents those with "Severe" Autism have.

Yes, here is the thread and I made my views known on that too:

http://community.autism.org.uk/discussions/health-wellbeing/diagnosis-assessment/whats-mild-autism

This professional has some enlightening views on it too:

Bill Nason, MS, LLP, Limited License Psychologist, Behavior Specialist.  Here you can find more information about him:
https://www.facebook.com/autismdiscussionpage/info

https://www.facebook.com/autismdiscussionpage

"Labeling - High and low functioning
We start this process when we seek a diagnosis to begin with. For parents with young children (1-3 years of age) who are seeking a diagnosis, I often recommend that they don't wait for the diagnosis. Forget about the label and begin supporting whatever developmental delays the child is showing. However, the diagnosis of "autism" doesn't say much about the degree of disability. There is too much variability in strengths and skills. When a diagnosis is not descriptive enough, people look for more specific ways to categorize the severity of disability. Not that high and low functioning are that descriptive.

In the medical field, diagnoses are categorized by symptoms and how much they impact the person's daily "functioning." It is the impact the disability has on the person's "functioning" that drives a lot of the services. For the most part, "high functioning" usually refers to good expressive speech, fair to good receptive understanding, and fair ability to function independently in their daily settings. "Lower functioning" is usually reserved to very limited verbal skills, often nonverbal, lower intellectual abilities, extreme difficulty understanding daily instructions, and needs a lot of assistance in doing their daily routine.

The confusion among parents and professionals is between "level of functioning" (intellectual ability), and "severity of autism." I know of children who are labeled "high functioning" who have severe autistic traits (very rigid/inflexible thinking, very resistant to change and uncertainty, and meltdown over simple snags in their day.) However, they are considered "high functioning" because they are very verbal, get good grades in school, and can do personal care independently. I have also met children who are considered "low functioning" because they are nonverbal, have difficulty with performing personal care, and difficulty with academics, but who's autism traits are less severe; more flexible in their thinking, handle daily transitions easier, can reference others better, and have fewer meltdowns. So, level of functioning doesn't also correlate with the severity of the autism. Just because a child is labeled “high functioning”, doesn’t mean he doesn’t have severe autism. Many people confuse the two, which can often exclude some from treatment, or lower the expectations for others.

We also have to be very careful when we equate “lack of verbal skills” with low intellectual abilities. The single largest characteristic used in labeling the child “high vs. low functioning” is the degree of spoken language they have. This also can be very deceiving! Although there is a strong correlation, there are many children who are nonverbal that have much higher cognitive abilities than we first recognize. They simply cannot express it in our customary ways. Once we find them a “voice”, whether through pictures, written words, manual signs, etc, we find they have much stronger cognitive skills, than we had anticipated. It isn’t until we find the right medium of expression do we begin to understand what they truly know. So, our best bet is to always assume “competence” to learn, if the right supports and teaching style can be identified. Don’t get too hung up on “low vs. high functioning” labels.

Low/High Functioning vs. Severe/Mild Autism
The last post discussed the problem with labeling someone high vs. low functioning in regards to their diagnosis. The problem comes from the fact that a person can be high functioning (verbal, good academic skills, fair to good personal care), but have moderate to severe autism (rigid inflexible thinking, strong sensory issues, poor emotional regulation, delayed processing, and impaired ability to relate with others). Also, a person can be considered low functioning (poor verbal skills, limited academic skills, and minimal personal care skills) but only have mild autism (more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected).

This appears contradictory at first, but when we look closer we see that these labels actually represent two different dimensions. The first, level of functioning dimension, represents the degree of cognitive functioning, or intellectual disability. The second dimension represents the severity of autism symptoms. You could look at these two dimensions as crisscrossing on perpendicular planes, with the dimension of intellectual abilities (high, moderate, low) running vertically and the dimension of autism symptoms (severe, moderate, and mild) running horizontally. The moderate levels of each dimension meeting at the intersection of the two dimensions. Consequently, you can have people who are very high functioning verbally and intellectually, and be moderately to severely impaired in autism symptoms. This can be confusing for many people who initially see the very bright, verbal child, and not initially see the severity of the autism. Or, assume that the nonverbal child is severely autistic. It is not that easy to diagnosis.

Making matters even more complicated, is the variable of verbal skills. Although verbal skills are highly correlated with intelligence, it isn’t always the case. Do not assume that the child who is nonverbal has poor intellectual abilities. There are some children who find it difficult to talk due to auditory processing and motor planning difficulties, not lack of cognitive skills. People often assume that the nonverbal child is severely impaired and place lower expectations on them. The same is also true for the child who is very verbal, but most speech is hidden in scripting and echolalia, and appears to have higher cognitive abilities then he actually may have. So, even for the two basic dimensions (intelligence and autism symptoms), the mixing in of verbal abilities can be deceiving.

The use of labels like high and low functioning, and severely and mildly impaired, are not diagnostic terms, but used more as descriptors when people try and categorize level of impairments. Hopefully the diagnostic criterion in the new DSM will be more descriptive and accurate. Until then, and probably for some time, people will be adding their own descriptive labels to the diagnoses."

It helped me to clarify in my own mind, why high-functioning is a ridiculous descriptor.  It would be better to just say autism with intellectual impairment/learning difficulty and autism for those without such an impairment.