Black, Hispanic kids underrepresented in autism identification - We keep talking, but there's not real change. Sad

Black, Hispanic kids underrepresented in  autism identification - We keep talking, but there's not real change. Sad

The number of children diagnosed with autism has increased in recent years, but a new study co-authored by a University of Kansas professor shows that while the number of students with

autism increased in every state from 2000 to 2007, black and Hispanic children were

significantly underrepresented. Jason Travers, assistant professor of special

education, co-authored a study that analyzed administrative identification of autism in every

state under the Individuals with Disabilities Education Act for the years 2000 and 2007. The

disparity in the odds of white students identified compared with minorities might reflect a similar

phenomenon associated with the widespread increase in students diagnosed with learning

disabilities in the late '70s and attention deficit hyper disorder in the '90s, the authors argue, and

also shows that minority students probably are not getting the same services as their peers.

Travers has studied autism and diagnosis rates previously and noticed discrepancies in

the number of students diagnosed. The Centers for Disease Control have estimated that one in 68

children have autism. "That's a pretty alarming number," Travers said of the CDC

figure. "I wanted to see if there were differences in these rates. Previous research had found that

African-Americans were over-identified. But the data I was looking at showed they were under-
identified. This was during an era when autism prevalence rates were increasing across the

board." Travers and colleagues Michael Krezmien of the University of Massachusetts-
Amherst, Candace Mulcahy of Binghamton University and Matthew Tincani of Temple

University examined autism identification rates from schools in all 50 states in 2000 and 2007

for the study, published in the Journal of Special Education. The study was started while Travers

was a faculty member at the University of Massachusetts-Amherst. Administrative

identification reflects rates at which schools—not necessarily a clinician—identify a child as

having autism. Widely varying criteria from state to state are part of the problem, the authors

state, but not the full story. White students identified as autistic increased from 2000 to 2007 in

all states and the District of Columbia. The number of African-Americans identified increased in

all states except Alaska and Montana, and the number of Hispanics increased in all states except

Kentucky, Louisiana and the District of Columbia. While counts in all categories showed an

increase, black and Hispanic increased at much smaller rates, and all three increased at lower

numbers than predicted by the CDC. "Nearly every state that had proportional

representation of students in 2000 underidentified black and Hispanic students in 2007,"

the authors wrote. "Although there is no firm epidemiological evidence that race is predictive

of autism, we found substantial racial differences in the ways U.S. school identify students with

autism." The discrepancies indicate a number of problems, Travers said. Chief

among them, regardless of why white students are being identified with autism at higher rates,

the results may mean services are not equally accessible among the races. When more students

of one race are being identified, more services for autism will go to those students, and not to

students and schools that are underrepresented. Critics have claimed that white students are

being overidentified or that administrative diagnoses rates are not reliable. "These data

depict what's going on in schools," Travers said. "Whether or not they match with clinical

diagnoses, the numbers can be associated with a variety of costs. They tell us about the human

costs, financial resources dedicated to services, administrative costs, community costs and many

others." The disparities also suggest that white students are more likely to access

early intensive behavior intervention services, educational supports, occupational supports and

others designed for students with autism than their black and Hispanic peers.

Travers intends to address the disparities in future research and develop more accurate methods

to predict disparities in rates of autism. One possibility is to gather data from school districts,

counties and states across the country on the number of students with autism and analyze other

demographics such as neighborhood median income, teacher quality, number of students that

qualify for free and reduced lunches, staff turnover and numerous other factors. He would then

compare that data to U.S. Census information to develop advanced statistical models that could

more accurately predict indicators for autism numbers in schools. "I'm not convinced

we thoroughly understand this problem in special education right now," Travers said. "I think

what's needed is advanced statistical models that can more accurately identify predictors

associated with identification." In addition, schools and states need to identify

consistent methods of identifying autism. The longer they go without, and the more prevalence

numbers are used for political purposes, the greater the inequity will be for minority students, as

the data suggests. "Unfortunately, but not surprisingly, until this problem is

thoroughly understood and scientifically validated methods to prevent the problem are identified,

it seems that the majority of the un- or mis-identified students with autism will be children of

color," the authors wrote.

PRT Get's Results for Autism - That's the good news...

I am a big fan of both Dr. Koegel and PRT - and I am frustrated that it is so hard to find agencies who provide behavior services who have staff with good training in this intervention. Any idea's for this LA mom?  Anyone working with an agency who's nailed this?  Please let me know via email at autismdaybyday@gmail.com! Thanks in advance :)

KOEGEL AUTISM PRT

Study co-authored by Lynn Koegel of the Koegel Autism Center at UC Santa Barbara shows effectiveness of Pivotal Response Treatment (PRT)® Friends and Colleagues, We have some exciting news to share with you! A study in the Journal of Autism and Developmental Disorders co-authored by Lynn Koegel, Clinic Director of the Koegel Autism Clinic at UC Santa Barbara, offers findings that contribute to the overall body of literature supporting Pivotal Response Treatment (PRT). Appearing in the Journal of Autism and Developmental Disorders, the paper, co-authored with Fereshteh Mohammadzaheri and Mohammad Rezaee, from the Hamadan University of Medical Sciences and Health Services, Hamadan, Iran, and Seyeed Majid Rafiee from the Institute for Cognitive Science Studies, Teheran, Iran, is entitled “A Randomized Clinical Trial Comparison Between Pivotal Response Treatment (PRT) and Structured Applied Behavior Analysis (ABA) Intervention for Children with Autism.”     Thirty children diagnosed with autism, 18 boys and 12 girls, ranging in age from 6 to 11 years, participated in this study. The children were randomly paired and assigned to either a group where they were treated with traditional applied behavior analysis (ABA) methods or with pivotal response treatment. After three months of intervention, the data showed that the PRT approach was significantly more effective in improving targeted and untargeted areas. The children in the PRT group saw greater gains in social communication skills, as well as overall gains in pragmatic skills, including inappropriate initiation, coherence, stereotyped language, use of context, and rapport. “With large numbers of children being diagnosed with autism, intervention procedures that are more efficient are both time and cost effective,” the paper concludes. “As well, procedures that speed up the habilitation process are important for children with ASD [Autism Spectrum Disorders], particularly if they produce widespread gains beyond the specific treatment goals.”

News Alert: CDC Study Says Children With Autism Could Be Diagnosed Earlier

CDC Study Says Children With Autism Could Be Diagnosed Earlier

   

      The Centers for Disease Control and Prevention (CDC) recently released new project findings on the prevalence rate of 1 in 32 Somali children with autism spectrum disorder (ASD) in Minneapolis. While the report says that Somali children with ASD are more likely to have cognitive disabilities and more significant disabilities than all other racial groups, the data say that the rate of autism in the Somali population is about the same as in the white population (1 in 32 vs. 1 in 36). The report also states that children who have autism aren't identified as early as they could be.     insightnews.com
     
 "This new data from the CDC indicate potentially higher rates of autism spectrum disorders in distinct populations than the national numbers, clearly show that more research is needed to better understand autism, and again makes the case that additional funds must be made available for services and supports for children with autism and their families.

      "The CDC continues to do important work in this area, shining a bright light on what families associated with The Arc and our chapters experience everyday – autism spectrum disorders touch so many people, of all cultures and backgrounds, and we must do more to support them to achieve their goals and to foster an inclusive society. The Arc is committed to families of all backgrounds in our efforts to serve and support people with disabilities, through our network of 700 chapters across the country," said Peter Berns, CEO of The Arc.

      "About a third of individuals and families using advocacy services from The Arc Greater Twin Cities are from multicultural families," said Kim Keprios, The Arc Greater Twin Cities' chief executive officer. "We have been working hard to make connections in the Somali community because we know Somali children who have autism are not being diagnosed as early as they could be and therefore not getting critical services. Anyone who might benefit from The Arc's assistance in getting a diagnosis, receiving help with special education issues and more, is encouraged to call us at 952-920-0855 or visit www.arcgreatertwincities.org."
+ Read more.       

Economic Benefits to Early Intervention...Pay Now Pay Later!

Autism: Early intervention found cost effective through school years

Posted By News On May 1, 2013 - 2:30pm

Nick with his BII in pre-school. Worth every dollar! 

(NEW YORK, N.Y.) May 1, 2013 – The Early Start Denver Model (ESDM), a comprehensive behavioral early intervention program that is appropriate for children with autism spectrum disorder (ASD) as young as 12 months, has been found to reduce the need for ASD therapies and special education services through the school years following their early intervention. These findings were presented by David S. Mandell, Sc.D., Associate Professor, Director, Center for Mental Health Policy & Services Research, University of Pennsylvania Perelman School of Medicine, today at the Autism Speaks Toddler Treatment Network meeting held in San Sebastian, Spain concurrent with the start of the International Meeting for Autism Research.

The investigation evaluated cost of the early intervention, both ESDM and typically available "community" early intervention services, both in combination with traditional autism-specific related services including other forms of ABA, speech therapy, occupational therapy and physical therapy.

After the clinical trial comparing ESDM to community interventions was completed, all children were referred back to the community and parents were free to seek services for their child. During this post-intervention period, children in the ESDM group were found to receive fewer hours of service per month than the children who received early intervention services typically-available in the community (168 vs. 257). This difference is spread across many different services, but is concentrated in the use of special education services and individual therapies, including speech and language therapy, physical therapy and occupational therapy. On the other hand, the ESDM group received many more hours in typical education settings than the group of children who previously received typically available early intervention services.

ESDM is the first early intervention for toddlers with ASD to undergo controlled clinical study of intensive early intervention and has demonstrated both improvement of social skills and brain responses to social stimuli. These optimal outcomes include increased IQ, increased adaptive and social behaviors as well as promoting the normal development of the brain and behavior that optimizes a child's potential to participate meaningfully in the community into their adult years.

"It is very promising to see that children who received two years of ESDM intervention required fewer hours of therapy and special education services through the remainder of their preschool years," said Geraldine Dawson, Ph.D., Autism Speaks chief science officer. "Not only do the young children who receive ESDM benefit in the short term with respect to improved IQ and social skills, and brain functioning, we see that through their remaining preschool years these children require fewer special education supports."

This findings compare 21 children who underwent ESDM to 18 children who received community early intervention during the two years they received these early intervention services and then for four years as they were followed by Principal Investigator Annette Mercer Estes, Ph.D., Research Associate Professor of Speech and Hearing Sciences and Research Affiliate, in the Center on Human Development and Disability at University of Washington. Dr. Estes compiled all of the services the children continued to receive post intervention. Dr. Mandell then converted them to 9 categories of therapy and calculated the cost of each category by multiplying the number of hours of each type of service received by the common cost units based on public reimbursement models in U.S. and U.K.

While ESDM frontloads costs and is more expensive to deliver in those first two years of early intervention, the end of elementary schools by the time children entered high school, ESDM showed a positive return on investment ,by the time children will enter high school" explained Dr. Mandell. "Based on the data we had available, the cost effectiveness of ESDM over a relatively short period of time is clear, even when only examining this narrow group of services. Given what we know about service use as children with autism age, it is quite likely that the long-term cost savings will be even greater," he continued.

During the two years of delivery, ESDM, including all related services, had an average monthly cost of approximately $10,000/child. The average monthly cost of ESDM alone is $5,560/child. Children in the control group, who were receiving standard community-based early intervention, had an average monthly cost of about $5,200/child.

In the four years post early intervention, during which these children were tracked, the ESDM cohort required on average approximately $4,450 in related services – speech therapy, physical therapy, occupational therapy and ABA. The community intervention children, on average, required approximately $5,550 in related services.

Dr. Mandell believes this is provocative research. "We used a very narrow definition of cost for this study, including only autism-specific services, such as physical, occupational and speech therapies as well as ABA," he explained, "I believe the cost efficiencies would become even more pronounced if there had been an evaluation on health costs and overall family economics such as the ability of both parents to continue to work and earn income while their child received services."

ESDM, which combines applied behavioral analysis (ABA) teaching methods with developmental 'relationship-based' approaches, was previously demonstrated to achieve significant gains in cognitive, language and daily living skills compared to children with ASD who received commonly available community interventions. On average, the preschoolers receiving ESDM for two years improved 17.5 points in IQ compared with 7.0 points in the community intervention comparison group.

"This work creates an important framework, such that validated treatments and interventions should be assessed over the long term," concluded Dr. Mandell. "These metrics, the number of functional services and hours of services of support an individual continues to receive, are important measures to demonstrate efficacy."

New Study: Early Treatment Helps Autism

If you have young children on the spectrum, you don't want to miss this. Kudo's to the amazing Dr.s Robert and Lynn Koegel developers of Pivotal Response Therapy.  Great to see "science" confirming your phenomenal work. 

By RICK NAUERT PHD Senior News Editor
Reviewed by John M. Grohol, Psy.D. on November 7, 2012

Emerging research suggests early treatment for children with autismspectrum disorders (ASD) can significantly improve behavior, stimulate communication and enhance brain function.

Yale School of Medicine researchers have published their study findings in the Journal of Autism and Developmental Disorders.

Researchers Fred Volkmar, M.D., Kevin A. Pelphrey, Ph.D., and colleagues say the study findings suggest that brain systems supporting social perception can be improved when an early intervention behavioral program is administered.

In the study, investigators used a technique called pivotal response treatment. This treatment includes parent training, and employs play in its methods.

ASDs are complex neurobiological disorders that inhibit a person’s ability to communicate and develop social relationships, and are often accompanied by behavioral challenges.

Until recently, the diagnosis of autism diagnosis typically was not confirmed until a child was about three to five years-old. As a result, treatment programs were developed for this older age group.

Today, Volkmar and his team are diagnosing children as young as age one. The combination of an early diagnosis and then application of the pivotal response treatment intervention has been revealing.

Pivotal response treatment, developed at the University of California-Santa Barbara, combines developmental aspects of learning and development, and is easy to implement in children younger than age two.

Functional magnetic brain imaging was used in the current study to measure changes in brain activity after two five-year-olds with ASD received pivotal response treatment.

Study co-author Pamela Ventola, Ph.D., used pivotal response treatment to identify distinct behavioral goals for each child in the study, and then reinforced these targeted skills with treatment involving motivational play activities.

The team found that children who received this treatment showed improvements in behavior, and being able to talk to other people. In addition, the MRI and electroencephalogram revealed increased brain activity in the regions supporting social perception.

Although the findings are preliminary (from two children), the researchers are currently conducting a full-scale study of 60 children.

Pelphrey said that while both children in the current study received the same type of treatment for ASD, the results were not homogenous because ASD is a multi-faceted disorder that has a unique effect on each child. Some children with ASD function on a higher level than others, for example.

“ASD is a heterogeneous disorder, and research aimed at understanding treatment must address this heterogeneity,” said Pelphrey. “Both the children in our current study made progress, but their degree of progress and level of skills at the end of treatment were distinct.”

Volkmar sees these results as a first step in a novel approach to treatment planning. “Autism research has come a long way,” he said.

“These findings are exciting because they show that early intervention works in autism.”

Source: Yale University

Choosing A Social Skills Program; Not as Easy as I Thought

When Nicky was three, I thought social skills would be the easiest of his many interventions. I thought the hardest and more important therapy was ABA, specifically DTT.  Social skills seemed so simple, easy breezy, anyone could do it.  I mean how hard it could be to get a child to play, follow your lead, and learn how to greet someone. Boy was I WRONG!!  Please understand, I am not minimizing ABA. ABA has been critical to Nick's development and both interventions are equally necessary for out kids. I a pointing out that I was simply wrong in thinking ABA was a more difficult intervention than social skills. In time I learned that in DTT Nicky was asked to repeat the same tasks over and over until he mastered it.  A good therapist followed a very specific program, executed only that program, measured results and did not do anything outside of the program trials. On the other hand, with social skills the therapist had to be constantly on the lookout for those unique opportunities in every situation to help the child build skills. A good social skill therapist is always looking for and creating teachable moments, vs following a specific program design. When you consider how different each of our kids are, you start to understand how much it work it takes to successfully address social skills.  Then there’s the reality that all social skills programs are not created equal. That said, no matter where your child is in the process, please read this great breakdown from Dr. Pam Wiley from LA Speech and Language. 

Social Skills Programs: Aren't they all the same?

The answer is “No. They are absolutely not the same.” It is not uncommon for a parent to enroll their child in a social skills program and then suddenly leave in disappointment. Most often it’s because parents thought that the program was something that it wasn’t. Common complaints are too structured, too much playing, unqualified staff even though the site administrator has impeccable credentials, or even staff members who demonstrate poor social skills. We’ve heard it all! The question then becomes how do you know which program is the right one for your child?

It’s really important for parents and professionals to be aware of the different types of programs and their specific focuses and approaches used to stimulate and promote positive social interactions. The four main types are language, behavior, sensory, and play and in this blog I will provide generalinformation on each of them.

Language Based

A language based program focuses primarily on the use of the verbal and nonverbal aspects of language. These programs offer structured and unstructured opportunities for your child to communicate effectively in a naturally occurring manner. The goal is to encourage children to use their words to communicate their feelings and thoughts, to understand the feelings and thoughts of others, and to learn the rules of social communication referred to as pragmatics which includes turn-taking, eye contact, topic maintenance, and other nonverbal dimensions of communication.

Like most programs, a language based program will also address challenging behaviors and sensory issues but these typically are secondary to the speech and language focus. A child best suited for this type of program is a child who has some language but does not use it consistently or appropriately, the child who wants to have friends but is unable to communicate effectively enough to connect with them, the child who is so “precocious” that s/he turns their peers off, or the child who is described as a social loner and disinterested in their peers. A speech and language based program is most effective for these types of children.

Language based social skills programs are led by Masters level or licensed/certified SLP’s who ideally should have training and experience providing services to children with ASD and other special needs.

Behavior Based

Another approach to social skills training is based on a behavior model. This model addresses social skills using a procedure called ABA or Applied Behavioral Analysis. These programs typically use a behavior modification approach to design and implement effective instruction. Programs may use floor time and other behavior based approaches to teach social skills. Behavior based programs ideally should be led by a behavior or cognitive psychologist who possesses training and experience working with children with ASD and other special needs. A behavior based approach is especially helpful for the child who has difficulty with joint attention and engagement.

Sensory Based

A sensory integration model is designed for children who may have abnormal responses to sensory stimulation. Therapy typically incorporates a variety of sensory movements, relaxation techniques and strategies to teach the child to self-regulate his/her sensory system.

Language is incorporated in this approach but sensory integration is the primary focus. This type of program is provided by a licensed and certified occupational therapist who has training and experience working with children with ASD and other special needs. A sensory based program is especially helpful to the child who fidgets excessively and engages in persistent spinning or movement as well as the child who is hyper or hypo sensitive to touch.

Play Based

The fourth type of social skills program is a played based program. The model is grounded in a philosophy which places an emphasis on the importance of play in childhood (Wolfberg, 2003). Children come together to play under the guidance of a qualified adult play facilitator. The program is effective.

Regardless of the type of program you select it’s important to consider how the skills are generalized to everyday situations. Lastly, probably the most important part of the equation is your role as the parent. It is critical that you are also involved in the training so that you are able to facilitate the carryover of the social skills objectives on a daily basis in the home, school, and the community. L.A. Speech offers social and pre social language skills programs on Tuesday, Wednesday (drama social skills) and Saturday. I encourage all of you to do your homework and find the best fit for you and your child.

Visit http://speakla.com

Autism: another example of how being poor is bad for you

This just in...more confirmation that Autism is still a "Survival of the Fittest" disease :( , unfair and not likely to get better soon. 

Autism: another example of how being poor is bad for you  Dr. Claire McCarthy

A study just came out with some very interesting information about how children with autism do or don't get better over time. Guess which ones did better? 

The ones whose mothers were white and educated.

It's true. Researchers looked at the records of more than 6000 children ages two to 14 with autism followed by the Department of Developmental Services in California. They found that for the most part, even though they made progress, children who were low-functioning when they were diagnosed stayed low-functioning. Children who were high-functioning at diagnosis made more progress. And then there was a really interesting group, about ten percent of the children, who they called "Bloomers". Bloomers started out low-functioning, and then made rapid progress and ended up as high-functioning.

The researchers also had birth data about the children, which gave them information about the mothers: their age, place of birth, race, education level, and whether or not they were on Medi-Cal, the public insurance for low-income people. This is where it got really interesting. The researchers found that:

·         Low-functioning children were more likely to have mothers who were minority/foreign born, less educated, and on Medi-Cal

·         High-functioning children were more likely to have mothers who were white, more educated, and not on Medi-Cal

·         Bloomers were more likely to have mothers who were white and educated

What the researchers didn't have was detailed information about what kind of treatments and services the children got, so we are left to guess about the reasons for these findings--but it's not so hard to guess. Parents with more money and more education are more likely to be able afford more and better services. They can live in school districts that provide more. They are better able to fight for the needs of their children.

But it's more than that, because having a mother who was poor didn't just make it less likely that a child would "bloom"--it made it more likely that they would be low-functioning, not high-functioning, at the start. Either being born to a poor, less-educated minority mother gets you off to a bad start--or the high-functioning poor kids get passed by and never get diagnosed, let alone get services, because neither their parents or their schools have the resources to help them. It's probably both.

Being poor is bad for you. It's that simple. And it's not fair. Especially when you are a kid.

This is particularly bad news given that just last week the Centers for Disease Control reported that the rate of autism has risen to one in 88 (one in 54 in boys!). The largest increases were in Hispanic (110 percent) and black (91 percent)--kids who, according to the study, are less likely to make real gains.

 But here's the thing: it's not just autism. Being poor really is plain old bad for you, especially when you have a chronic disease like autism or asthma or obesity. I see it in my practice: despite my best efforts, children with chronic disease who are poor, whose parents are minority and less educated, do less well. There's so much about being poor that affects health--your home environment (which can have unhealthy exposures), your ability to afford medications and get to appointments, your ability to be home with your children (instead of working two jobs to make ends meet) or enroll them in extra activities that could help them.

As I listen to news stories about the Supreme Court arguments over health insurance, I can't help feeling like we are colossally missing the point. Instead of getting upset over individual mandates, we should be getting upset--really upset--over the fact that so many people are doomed to poor health because of their income, their education, or the color of their skin.

Hope--or the lack of it--shouldn't be an accident of birth.

http://pediatrics.aappublications.org/content/early/2012/03/28/peds.2011-1601

Artificial Intelligence Provides Easy Autism Diagnosis in Minutes

Artificial Intelligence Provides Easy Autism Diagnosis in Minutes

      By Timothy Boyer emaxhealth.com
      The problem with obtaining a diagnosis of whether or not your child may have autism is the fact that trained clinicians are backlogged with requests for autism testing. This is in part due to that the incidence of autism is high (now 1 in 88) and the testing procedures are lengthy requiring hours rather than minutes for a proper evaluation.
      Autism is typically diagnosed though a 93-question questionnaire called the “Autism Diagnostic Interview, Revised” (ADI-R) test and/or via a behavior observation evaluation of the child in question with the “Autism Diagnostic Observation Schedule” (ADOS) exam.
      The ADOS exam consists of 4 age-dependent modules that contain semi-structured activities designed to measure social interaction, communication, play and imaginative use of materials. Module 1 contains 10 activities and 29 items and is typically used for assessment of younger children.
      Both the ADI-R and ADOS exams can take up to 3 hours or more and must be performed by a trained clinician with experience in diagnosing autism. One of the shortcomings aside from time is that the test results are analyzed subjectively and thereby prone to suffer from human error.
      To remedy the backlog, time spent diagnosing and human error, researchers from Harvard Medical School have found a way using artificial intelligence to more accurately detect autism in children and establish a diagnosis in minutes rather than hours.
      In a recent issue of Translational Psychiatry, researchers report their findings that by using computational algorithms that rely on a few questions and a short video of a child, a quick and accurate diagnosis is possible and could lead to earlier than average treatment.       “We believe this approach will make it possible for more children to be accurately diagnosed during the early critical period when behavioral therapies are most effective,” says Dennis Wall an associate professor of pathology and director of computational biology initiative at Harvard University’s Center for Biomedical Informatics.
      The computational algorithms described in the published paper are referred to as “machine-learning algorithms”—a form of artificial intelligence where data is analyzed leading to a resulting diagnosis for autism that can be made efficiently, effectively and without the potential for subjective human error.      The algorithms were applied toward large data samples of patients who had previously been diagnosed with autism through the ADOS exam. What the algorithm analysis revealed was that 8 of the 29 items contained in Module 1 of the ADOS exam were sufficient to classify autism with 100% accuracy. The analysis led to the development of an alternating decision tree (ADTree) algorithm that used in conjunction with a short observational video of a child proved to be highly effective in a speedy and accurate diagnostic method for determining autism in young children.
+ Read more.

Mom's of Autistic Children Work Less, Earn Less

Yes, this was in the news and I couldn't bring myself to call it "NEWS". 

Are there any Mom's out there who didn't know this? Is there anyone out there who doesn't know this? 

News for autism report march 19 2012

MD News

1. Moms of autistic children work less, earn less

   
   

   Reuters‎ - 1 day ago

   "The needs of children with autism really straddle a number of service systems and there is a tremendous ... SOURCE: bit.ly/cxXOG Pediatrics,March 19, 2012.

1. Another Report on the Financial Burden of Autism

   About - News & Issues‎ - by Vincent Iannelli‎ - 1 day ago

   

   An autistic child peers from between curtains at the Consulting Centre for Autism in Amman, March 30, 2010, one of the few places in the country that helps children with the condition.

   Credit: Reuters/Ali Jarekji

   By Frederik Joelving

   NEW YORK | Mon Mar 19, 2012 11:02am EDT

   (Reuters Health) - U.S. families with autistic children earn nearly $18,000 less than parents of normally developing kids, according to a new report.

   The gap is mainly due to mothers not having a job or working fewer hours, researchers found.

   "The needs of children with autism really straddle a number of service systems and there is a tremendous amount of finger pointing in terms of who's going to pay," said David Mandell, associate director of the Center for Autism Research at The Children's Hospital of Philadelphia.

   "Mothers are leaving the workforce to cobble this care together for their kids," he added.

   Autism spectrum disorders, which range from mild Asperger's syndrome to severe mental retardation and social disability, affect about one in 110 children in the U.S., according to the Centers for Disease Control and Prevention.

   As more and more kids are diagnosed with the disorders, the nation is grappling with how to pay for the extra care these children need, which may cost as much as $3.2 million over a lifetime.

   Mandell said that until now, the impact on individual families in terms of employment and earningshad not been clear.

   For the new work, Mandell's group used data from national household surveys done yearly between 2002 and 2008, including 261 children with autism and more than 64,000 without health problems.

   After accounting for factors such as parents' age, race, education and health, fathers of kids with autism were just as likely to be employed as fathers of typically developing children. The same was true for how much fathers worked and earned.

   For mothers, however, there was a marked difference. Compared with mothers of kids without disabilities, those who had autistic children were six percent less likely to be employed, worked seven hours less per week and had less than half the annual income.

   All told, households with autistic children earned $17,763 less a year.

   The researchers couldn't say for sure that the gap is caused by having a child with autism. But Mandell said today's system means families have to shuttle their kids between several different providers.

   "I think it's a case of the mother becoming the case manager and the advocate for the child," he told Reuters Health. "If these kids were appropriately cared for it wouldn't be such a burden for the family."

   Guillermo Montes, a researcher at St. John Fisher College in Rochester, New York, said the new study shows families with children with autism make different financial decisions than others.

   "By putting their kids first, these decisions result in lower and more unstable family income," Montes, who was not involved in the new work, told Reuters Health by email.

   "State legislatures, employers and the federal government have to engage these families in a conversation about how to best assist them," he added. "Any assistance must preserve work flexibility and the wide variety of work and care arrangements which are key to achieve a work-family balance that works for kids with autism, their siblings and their parents."

   SOURCE: bit.ly/cxXOG Pediatrics, March 19, 2012.

Changing Interventions, Part I: Transitioning Out of Intensive ABA

Nicky has been getting various ABA based interventions since he was diagnosed, which means our entire family has been getting ABA since he was diagnosed! Now his team is saying he's had these services too long. Combined with CA in budget crisis, well they have to move the kids forward. They are nudging us toward a new model "Life Skills" described as more flexible than our current program. Flexible??? What does that mean? More flexible, for who? Does it mean a lower grade services provided by staff with less skill? Does it mean we're on our own now? Does it mean this is his plateau?  Does it mean he will lose his structure and regress?

I Don't Want to Change!!!!!!!

I know we've been working toward this moment. We've changed his school program to be life skills based, we took him off the diploma track and my team says this will be good.

I'm nervous, anxious and feeling ton's of uncertainly. I'm not sure how much of my response is rational and how much is just my visceral reaction to change with some random fear thrown in. If it's fear, am I afraid for him or am I afraid for me? Maybe I'm not sure if I will be able to handle it. 

One things for sure, this journey has taught me I don't like change! They say our kids become prompt dependent, maybe I'm support dependent. Ugh!!!  I'll keep you posted.

Autism Check List: A Complex Diagnosis

Most of us know, but there's always someone other there who needs to learn. So I'm posting 

A recent ASD checklist from the LA Times series I've been sharing. Knowing how critical early intervention is I felt compelled to share this easy tool. 

Autism Check List: A Complex Diagnosis 

There is no blood test or other biological marker for autism. Doctors rely on their own observations and what parents tell them. Psychiatry's guidebook, the Diagnostic and Statistical Manual of Mental Disorders, lays out the criteria. Many autistic traits and behaviors are seen in children without autism or with other conditions. Only in sufficient numbers and specific combinations do they add up to a diagnosis on the autism spectrum.

Stories: Discovering autism

The three most common diagnoses on the spectrum are autistic disorder, Asperger's disorder and — for children who don't qualify for those — pervasive developmental disorder not otherwise specified (PDD-NOS). As this interactive checklist illustrates, there are many ways to arrive at each, and how a child is classified can amount to a judgment call. Answer questions by clicking below or select a hypothetical case to explore how a diagnosis is reached.

http://www.latimes.com/news/local/autism/interactive/

Prompts and Circumstance Part II - Language Processing vs Questions & Social Greetings

 Nicky is 13 and his language processing is so bad he still confuses "How are you?" with "How old are you?".  On the good side we have learned his strengths and we keep finding ways to use them to help Nicky expand and grow. Here's our latest team effort to help him with greeting and questions.  We begin tomorrow.  If you want to try it...please cut and paste away!

“Prompts” and Circumstance

“Prompts” and Circumstance

Avoid the dangers of “Prompt” Dependence!!  We've all heard it. First I was taught to give Nicky prompts, then I was told he's getting to many prompts. One day prompts are part of the solution, the next, part of the problem! Oh yeah, nothing simple about his journey.  

 

A clinician associated with Nicky’s program visited us to see how we were doing. The main observation: Nicky was getting too many prompts from me to help him manage his behavior, he should be more independent.  I resisted the pull to feel judged, remembering my note to self “It’s not about you, it’s about Nicky” and I saw her point of view.  Unlike me, she didn’t focus on how far he had come, or how hard we had worked to get him to this point, she only knew who Nicky was in that moment and she only saw his potential. She brought a new pair of eyes, and I guess we needed it.  

 

(Can you believe I’m the same protective defensive clawed mama bear who used to have to restrain herself in these situations!?)   

It's true, I do everything to help Nicky manage his behaviors, not just for him, but for me too.  Nicky out of control is awful, and I want to avoid the aggression, tantrums and meltdowns.  I was so locked into stopping them by all means possible, I didn't see that I had become part of problem.  Nicky has been taught self-management skills, and he knows them. The problem was, I was still prompting him to use the skills, instead of standing back -providing no prompts - and letting him figure out when and how to use the skill on his own.  Our goal after all is getting him to use the skills consistently and without assistance, so he can always rely on them, and that’s the only way to independence! I got it, at least for now.

 

I made a visual tool for Nicky to replace me giving him  prompts.  It's a behavior/consequence cheat sheet showing Nicky what behaviors result in a “Happy” Nicky and what result in a “Sad” Nicky.  I used all things that he knows and understands, things he wants and cares about, to help him connect the dots of consequence to his real world. On the Happy side are things that make him happy or lead him to things that make him happy. For example having a calm body earns him free time. If he earns free time he get's to go on his computer or play a video and that make's him happy. So he connects the positive behaviors that lead to happy events.  Same for the sad Nicky list. 

 

 I put them in his back pack and around the house.  To make sure they were handy so I don’t have to prompt him, I just hand him the card.  It’s been a few weeks and  it's working. Here’s  what it looks like:

 

 As always I open to feedback!