The Alaskan Armadillo
03/07/10 06:38 Filed in: Humor
This video by Midnight in Chicago puts forward an interesting and important take on Autism Spectrum Disorders and their relationship to human contact with a unique and endangered species. Since, by necessity, it starts with a background and history of the Alaskan Armadillo - a rarely seen and never photographed arctic species - it takes a little bit to get to the Autism component, but stick with it.
And enjoy!
Understanding what "1 in 100" means for Autistic Disorder
10/11/09 15:38 Filed in: Research
There have been a number of items in the news over the past couple of weeks regarding changes in our understanding about the prevalence of autism (I was even briefly in a television interview on the subject), and these items, when taken together, begin to shape up in an interesting fashion.
Probably the most heralded item was The Center's for Disease Control (CDC) October 5, 2009 press release announcing recent research supporting a prevalence rate for Autism of 1 in 100 people, or about 1% of the general population. This rate is higher than the previously reported 1 in 150 people, of course, and at first blush continues to support the concept that autism is on the rise. However, close attention to the other information that has come out is vital when looking at the overall picture.
The study referred to by the CDC was published in the journal Pediatrics (a PDF of the article is available here - I find the Pediatrics website difficult to navigate quickly). The study used a very large sample (over 78000 participants) of children from 3 to 17 years of age. It was conducted by randomly dialing U.S. telephone numbers and conducting interviews with the parents who answered the phone. Parents were asked "if they had ever been told by a doctor or other health care provider that their child had 'autism, Asperger disorder, pervasive developmental disorder, or other autism spectrum disorder'. Parents who indicated that they had been given such a diagnosis for their child were then asked if the child currently had autism. When the parent answered "yes" to both questions the child was included in the overall total". The results from this process was that reported 110 in 10,000 respondents indicated "yes" to both questions, resulting in an extrapolated prevelance rate of right around 1 in 100, or 1% of the general population.
When we begin to look at results like this it becomes clear how important the choice of language can be to understanding these types of results. In some cases this is referred to as an "increase in the prevalence" of autism - a phrase which implies that the disorder is increasing in frequency among our population. In scientific writing, however, we are taught to be very careful with our phrasing to prevent such implications, and this is a case in point. The results of this clearly well-done and important study would be more accurately described as providing a change in our understanding about the prevalence of autism.
A study released at nearly the same time as the article in Pediatrics demonstrates this point extremely well. A study completed by the National Health Service in Great Britain looked at rates of autistic disorder among adults in that nation. That study found a prevalence rate of 1 in 100 or 1% - essentially identical to the CDC's findings for children.
The study's design is quite similar to that of the study completed by the CDC, though it uses a much smaller sample (but still over 7,000 respondents) for it's phone survey. However, in the NHS study the researchers also completed the Autism Diagnostic Observation Schedule (ADOS) - the current gold standard for autism assessment - on a subset of the respondents to further evaluate their findings. Even with evaluation using the ADOS the 1% prevalence rate held.
To my knowledge, the NHS study is the first of it's kind to investigate the prevalence of autism among adults - something we certainly must understand before we assume that the actual prevalence is rising. The results of the NHS study strongly support the idea that there are, in fact, a large number of adults in the general population with disorders in the autism spectrum. Further, those numbers are nearly identical to the numbers we are detecting in children today.
That we have not previously looked at prevalence rates among adults points to an area of concern that has been noted among professionals who work with both children and adults with developmental disabilities: Virtually all of the research in autism has been focused upon children. This is certainly understandable, as it's in childhood when we can most help.
Still, those of us who travel in both circles (child and adult treatment) have suspected for some time that there are a large number of undiagnosed adults on the spectrum in a variety of settings. I, along with several other members of the Forest City Team, have had the opportunity to work with adults in both community and institutional residential settings who clearly met the diagnostic criteria for disorders on the spectrum, but who had never been diagnosed (and in many of the cases the symptom presentation was not subtle). This is becoming thankfully less common as understanding of Autism Spectrum Disorder increases among professionals.
These studies add immensely to our understanding of what autism looks like in the general population, and, taken together, will hopefully help us understand where to most effectively focus our efforts to best assist others.
Probably the most heralded item was The Center's for Disease Control (CDC) October 5, 2009 press release announcing recent research supporting a prevalence rate for Autism of 1 in 100 people, or about 1% of the general population. This rate is higher than the previously reported 1 in 150 people, of course, and at first blush continues to support the concept that autism is on the rise. However, close attention to the other information that has come out is vital when looking at the overall picture.
The study referred to by the CDC was published in the journal Pediatrics (a PDF of the article is available here - I find the Pediatrics website difficult to navigate quickly). The study used a very large sample (over 78000 participants) of children from 3 to 17 years of age. It was conducted by randomly dialing U.S. telephone numbers and conducting interviews with the parents who answered the phone. Parents were asked "if they had ever been told by a doctor or other health care provider that their child had 'autism, Asperger disorder, pervasive developmental disorder, or other autism spectrum disorder'. Parents who indicated that they had been given such a diagnosis for their child were then asked if the child currently had autism. When the parent answered "yes" to both questions the child was included in the overall total". The results from this process was that reported 110 in 10,000 respondents indicated "yes" to both questions, resulting in an extrapolated prevelance rate of right around 1 in 100, or 1% of the general population.
When we begin to look at results like this it becomes clear how important the choice of language can be to understanding these types of results. In some cases this is referred to as an "increase in the prevalence" of autism - a phrase which implies that the disorder is increasing in frequency among our population. In scientific writing, however, we are taught to be very careful with our phrasing to prevent such implications, and this is a case in point. The results of this clearly well-done and important study would be more accurately described as providing a change in our understanding about the prevalence of autism.
A study released at nearly the same time as the article in Pediatrics demonstrates this point extremely well. A study completed by the National Health Service in Great Britain looked at rates of autistic disorder among adults in that nation. That study found a prevalence rate of 1 in 100 or 1% - essentially identical to the CDC's findings for children.
The study's design is quite similar to that of the study completed by the CDC, though it uses a much smaller sample (but still over 7,000 respondents) for it's phone survey. However, in the NHS study the researchers also completed the Autism Diagnostic Observation Schedule (ADOS) - the current gold standard for autism assessment - on a subset of the respondents to further evaluate their findings. Even with evaluation using the ADOS the 1% prevalence rate held.
To my knowledge, the NHS study is the first of it's kind to investigate the prevalence of autism among adults - something we certainly must understand before we assume that the actual prevalence is rising. The results of the NHS study strongly support the idea that there are, in fact, a large number of adults in the general population with disorders in the autism spectrum. Further, those numbers are nearly identical to the numbers we are detecting in children today.
That we have not previously looked at prevalence rates among adults points to an area of concern that has been noted among professionals who work with both children and adults with developmental disabilities: Virtually all of the research in autism has been focused upon children. This is certainly understandable, as it's in childhood when we can most help.
Still, those of us who travel in both circles (child and adult treatment) have suspected for some time that there are a large number of undiagnosed adults on the spectrum in a variety of settings. I, along with several other members of the Forest City Team, have had the opportunity to work with adults in both community and institutional residential settings who clearly met the diagnostic criteria for disorders on the spectrum, but who had never been diagnosed (and in many of the cases the symptom presentation was not subtle). This is becoming thankfully less common as understanding of Autism Spectrum Disorder increases among professionals.
These studies add immensely to our understanding of what autism looks like in the general population, and, taken together, will hopefully help us understand where to most effectively focus our efforts to best assist others.
Jack London on Institutional Life
07/19/09 07:30 Filed in: Literature
I've had the distinct honor in my career of working with a number of people who lived in Illinois' institutional system. As a result, I've heard a variety of stories about what this experience was like from their perspective. Those perspectives are many and varied, and always fascinating.
Forest City's own Dr. Kouris is a member of the American Academy of Developmental Medicine and Dentistry. The AADMD is an organization dedicated to to improving medical and dental care for people with developmental disabilities. In their most recent newsletter they provided a link to a 1914 essay by Jack London titled Told in the Drooling Ward. The essay is told from the first-person perspective of Tom, a person living in a large institution.
In the current political climate in Illinois an "institution" for people with a developmental disability is essentially any congregate living setting larger than 8 people. Originally, however, this word in the context of London's story referred to massive facilities built on the asylum model. These structures were typically built on the outskirts of small population centers, and were designed to be self-sufficient (thus maintaining separation). Many of the asylums were working subsistence farms, housed their own power plants, had textile operations for clothing the residents, and nurseries to care both for the infants admitted, and for those born there to the residents. It was typical for the staff working at the programs in the turn of the century to also live there. The Dixon State School was originally a train stop, with the rail grade that ran through the grounds now converted to a bike path.
In short, these were encapsulated worlds unto themselves, with much of the work of maintaining the colonies done by the people living there. London's story, contemporary to the era of these facilities heyday, is extremely consistent with the accounts I've received from the people with whom I've worked. For many of the people living in these settings - particularly those with more severe disabilities - they represented hellish conditions of barely sufficient custodial care. But for a select few - like Tom in the essay - life in the institution presented a setting in which, unlike the wider world outside of the facility, they had real and satisfying responsibilities. I have personally worked with a couple of different women who, for example, fondly recall being "working girls" - working in the nurseries and caring for babies.
Illinois began dismantling it's asylum system in the 1970's and, while it is still woefully behind the rest of the nation in funding smaller settings and closing the large facilities, it no longer operates on the separated colony model that once was in place. The people from whom I've had the privilege of hearing these stories are now in their 50's, 60's, and 70's. Like survivors of the Great Depression and World War II they represent a rapidly disappearing and unreplaceable resource.
The essay is an excellent, brief read, entirely available online at the site linked to above. I highly recommend it.
Lawmakers Leave Budget in Limbo
07/02/09 06:17 Filed in: Politics
The end of Illinois' fiscal year passed on June 30th, 2009 with no budget resolution completed except for the "Doomsday" budget which dramatically scaled back or completely eliminated a wide array of social service programs in the state.
On the following day Governor Quinn vetoed that Doomsday budget, leaving the state with no budget and no means to operate. He's made a statement requesting that people providing state services continue to work and ensure continuity of services but was quoted in multiple sources, including on WGN Radio's website, as saying: "Until a budget is in place, the state has very limited authority to pay its vendors and grantees... vendors and grantees who currently perform state services do so at the risk of not being paid." [emphasis mine]
We discussed grantees a bit in this space a couple of weeks ago, but did not touch upon vendors. While many of us probably think of a "vendor" as being a person running a stand somewhere that sells items (say, for example, a hot dog vendor with a cart) the term actually takes on a very broad definition under the state's definition. For the state of Illinois, a vendor can essentially be anyone who provides work for the state who is not a state employee.
At a State Operated Developmental Center, which serves adults with developmental disabilities, for example, the word "vendor" can refer to a wide variety of services that range from the companies delivering food to, and taking trash away, to the doctors delivering medical care. In some cases these are large corporations but, often, these are small companies or even individuals who provide services to some of our state's neediest residents.
In the past, as the state has engaged in significant delays in its payment schedules, some of those vendors have found it necessary to stop providing services. In the past year state programs for people with significant disabilities have seen food vendors simply stop coming, for example, and had to scramble to make sure the people they serve could actually eat.
In the midst of this the Illinois lawmakers have apparently decided not to return to work on the budget until July 14. Steven Brown, a spokesperson for Speaker Madigan indicated that this date - two weeks out from the end of the fiscal year - was chosen due to concern for the lawmakers personal schedules. Steve Brown was quoted as saying "We surveyed members and tried to figure out when their schedules would allow them to come back, with the least amount of disruption to their lives," Brown said. "The president and the speaker are trying to treat members as if they're human beings and they have their own lives."
This suggests to this reader that the impact on the Lawmaker's vacation schedules is by far more important to the members of our General Assembly than is the impact of this delay on the lives of children and adults with autism, developmental disabilities, and mental illness.
On the following day Governor Quinn vetoed that Doomsday budget, leaving the state with no budget and no means to operate. He's made a statement requesting that people providing state services continue to work and ensure continuity of services but was quoted in multiple sources, including on WGN Radio's website, as saying: "Until a budget is in place, the state has very limited authority to pay its vendors and grantees... vendors and grantees who currently perform state services do so at the risk of not being paid." [emphasis mine]
We discussed grantees a bit in this space a couple of weeks ago, but did not touch upon vendors. While many of us probably think of a "vendor" as being a person running a stand somewhere that sells items (say, for example, a hot dog vendor with a cart) the term actually takes on a very broad definition under the state's definition. For the state of Illinois, a vendor can essentially be anyone who provides work for the state who is not a state employee.
At a State Operated Developmental Center, which serves adults with developmental disabilities, for example, the word "vendor" can refer to a wide variety of services that range from the companies delivering food to, and taking trash away, to the doctors delivering medical care. In some cases these are large corporations but, often, these are small companies or even individuals who provide services to some of our state's neediest residents.
In the past, as the state has engaged in significant delays in its payment schedules, some of those vendors have found it necessary to stop providing services. In the past year state programs for people with significant disabilities have seen food vendors simply stop coming, for example, and had to scramble to make sure the people they serve could actually eat.
In the midst of this the Illinois lawmakers have apparently decided not to return to work on the budget until July 14. Steven Brown, a spokesperson for Speaker Madigan indicated that this date - two weeks out from the end of the fiscal year - was chosen due to concern for the lawmakers personal schedules. Steve Brown was quoted as saying "We surveyed members and tried to figure out when their schedules would allow them to come back, with the least amount of disruption to their lives," Brown said. "The president and the speaker are trying to treat members as if they're human beings and they have their own lives."
This suggests to this reader that the impact on the Lawmaker's vacation schedules is by far more important to the members of our General Assembly than is the impact of this delay on the lives of children and adults with autism, developmental disabilities, and mental illness.
