Forest City Behavior
Excellence in Treatment for Developmental Disabilities

Training Ahead!


It's been busy times for training in the Forest City of late.

Our Why Do They Do That? series providing an overview of basic behavioral theory and how it is used in conducting a functional behavioral was offered in two sessions - one for professionals, and the other for parents - in cooperation with The Autism Program (TAP) at Easter Seals in Rockford last month. We'll be doing an additional session for the staff at the Ryan Jury Child Development Learning Center coming up June 22nd, 2010.

Coming up this weekend I will be presenting at the College of Pharmacy and College of Medicine CE/CME Program and Open House at Rockford. The topic for Saturday's talk is Identifying Clinical Treatments in Autism, geared towards helping medical and other professionals understand the different types of Autism Spectrum Disorder diagnoses and providing an overview of recent research evaluating different treatments for the disorder.

The program starts at 8:00 AM at the University of Illinois College of Medicine at Rockford, found at 1601 Parkview Avenue in Rockford, IL. Yours truly will be talking at 10:15 AM. The full flier can be found at the University's website.

The Alaskan Armadillo



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

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.

Lawmakers Leave Budget in Limbo

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.

They've Gone Home...

After all of the newspaper articles, rallies, and speeches discussing the need to proceed with a proper budget for developmental disabilities services in Illinois, the legislators ended their special session on Wednesday of this week and went home essentially having accomplished nothing. The best that can be said for the process at this point is that, after all of this wrangling about how services were simply going to end, Governor Pat Quinn was quoted as finally saying “I’m not going to preside over that kind of wholesale slash and burn of human services” in the Springfield Journal Register on Thursday.

Illinois is no stranger to budget struggles. For more of the past several years than I care to remember we've ended the state's fiscal year with no budget, and the legislature going into special session in order to rectify that. Each year this results in confusion and uncertainty for service providers who operate with little to no margin for that uncertainty. This unfortunately means that this recurring poker game played in Springfield every year is played with the lives of our most vulnerable citizens as chips in the pot.

Illinois Threatens Autism and Developmental Disability Service Cuts

"Every day when you came in to work you'd watch for the sign at the front gate saying 'paychecks are in'. There was a credit union office right outside the gates that did a booming business providing short term loans for the workers while they waited for their checks."

This was a story Tom Bachhuber, a veteran state employee (now retired), used to tell about working at the Dixon State School in Dixon, Illinois, in the 1970's. The State School is no longer in operation, but with the stories coming out of Springfield, Illinois right now, it seems as if those stories from nearly 40 years ago may be coming back around.

Because of the general audience focused upon by major newspapers, it can be difficult to get much information about how the larger budget issues may affect specifically autism and developmental disabilities services. For this reason it seems important to discuss these issues here and make sure that that those who may be affected are aware of the implications of Illinois' budget issues on services. In short, ladies and gentlemen, the situation is dire.

To place these cuts in perspective, a memo sent to DD provider organizations by Lilia Tenity, Director of the Division of Developmental Disabilities on June 11th, 2009, was published publicly on the ARC of Illinois website (scroll down the page to see the memo). In this memo Director Tenity indicates to providers that " The General Assembly recently approved a "50-percent budget" for fiscal year 2010 that cuts a long list of vital services and programs. This budget falls far short of meeting the statutory obligations and needs of the State, and fails to fulfill our basic commitments to the people of Illinois."

She continues: "The legislature's "50 percent budget" cut $2.24 billion from the DHS budget severely impacting our ability to provide vital services to people with developmental disabilities and their families. As a result, we are forced to cut a number of grant programs and consider significant rate cuts to remaining programs."

Director Tenity goes on in the memo goes to list (by funding codes) the grant programs that will no longer be funded as of June 30th. The funding codes and titles are apparently important to bureaucratic systems, but leave something to be desired in terms of description for the rest of us, so we'll clarify a few of them below:


In addition Director Tenity's memo goes on to indicate that "Significant rate reductions, in the range of 20 - 30% annually, for all remaining programs including Community Integrated Living Arrangements (CILA), Developmental Training (DT) and Intermediate Care Facilities for Persons with Developmental Disabilities (ICF/DD) services are still under review." Given that Illinois was already ranked at or near the bottom in provision of funding for community services for people with developmental disabilities nationwide, coming in dead last (51st) for number of people per capita served in small residential (6 or fewer people) in 2006 according to the most recent State of State in Developmental Disabilities report the proposed cuts seem all the more poignant and troubling.
.
These cuts are of concern to those of us at Forest City Behavior in a number of ways. Most directly, and in the interest of full disclosure, we provide assessment and consultation services to many of the types of agencies mentioned above. In the bigger picture, however, it is important for people to be aware that, due to the already meager funding offered in Illinois (51st, remember) most Autism and Developmental Disability service agencies operate on a shoestring budget in the best of times. Successful behavioral treatment requires the active participation of everyone involved in a person's treatment. It requires healthy, fully functional support agencies. In many cases we are providing behavioral services to support and prevent people from moving out of community placements and into state operated institutional settings. With the bare-bones funding proposed by these cuts this will simply no longer be possible.

If these issues concern you as they do us, it is vitally important that your state legislators be made aware of those concerns. You can identify your representatives by entering your zip code at Illinois State Board of Elections search page.

Autism and Lupron

The Chicago Tribune has an excellent and disturbing article in today's paper about a small group of practitioners who are prescribing Lupron, a drug that shuts down the production of testosterone in males, for treatment of autism.

The author, Trine Tsourderos, does an excellent job of investigating many of the key points that we often discuss here in terms of investigating and critically analyzing claims. Among other key points, according to the article, it notes that the practitioners developing this "treatment" have no specialty or background in either autism, or the types of medicine subspecialties that would provide training and background either in the treatment of autism or in endocrinology, the type of specialty that would typically oversee treatment with Lupron.

But perhaps most telling is the fact that the developer himself is directly quoted as claiming that "Lupron is the miracle drug". As Carl Sagan once said "extraordinary claims require extraordinary evidence." Any time someone - anyone - is claiming miraculous results it should be a red flag.

It is a sad but completely unsurprising fact that despite the completely unproven - and frankly uninvestigated - nature of this treatment, the practitioners have been opening clinics in a sort of franchise model across the country. This begins to make fairly clear the motivation behind their approach...

Genetic Links in Autism

The Chicago Tribune is reporting, in an article dated for today, on a pair of studies reported in the Journal Nature that relate to advances in research on genetic variations in autistic disorder. The entire text of the study article is available at Nature's website for those with advanced training in genetics and/or molecular biology (a group I am most certainly not among).

Information about study size, and design however, which are important components in determining the relative quality of research, are more universal research components. It is notable that this was a fairly good sized study, involving over 5,000 participants with autism spectrum disorders, and a very large control group. Autism diagnoses were made using the ADOS and/or the ADI-R, which would suggest good reliability and consistency in diagnosing autism amongst the participants. Read More...

TV Does Not Cause Autism

Note - This is a re-publication of an article from 2006 (there has not a three year-gap in postings). When we re-designed the site recently we did not re-post all of the previous entries, though we will be adding in those which seem especially relevant. This article is the first archived entry to be added, as it is referenced in a current posting - EJW

This morning (10/17/06) an article appeared on Slashdot referring to a study that ostensibly claimed that television watching causes autism. 

As has become very common in our media-driven society, the concepts and information in the study were significantly simplified for the article, and conclusions were drawn that the study, nor its authors, could possibly support.  Unfortunately, when it comes to our children, and particularly disorders as puzzling as autism, everyone dealing with it – parents, professionals, administrators – is desperately hungry for any advance in understanding.  This being the case, information presented in this shorthand way quickly becomes accepted fact, despite it’s not being an accurate representation of the available information.  Given this, I am very concerned that we will very soon be hearing it stated, as if it were established fact, that television causes autism.

In light of this, let me say up front that this entry probably should be more accurately titled “this article does not show that TV watching causes autism”. Read More...

by Erin J. Wade, PhD