Autism Speaks is hiring. You can find their job posts on the Web. Nothing surprising about that. Here is a segment from a recent job post:

Autism Speaks is the world’s largest autism science and advocacy organization, dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism. We currently have a rewarding (new) career opportunity available for an experienced Area Director – South Florida (Miami, Palm Beach, Broward) to join our growing organization.

The selected individual will be responsible for driving revenue through walks and events, strengthening existing markets and identifying and developing new markets. Must be experienced in staff management and volunteer leadership development. This position reports to the Executive Director – South Florida Chapter, which is based in Miami, FL.

Let me highlight the phrase that caught my eye: “...strengthening existing markets and identifying and developing new markets”.

Before people start talking about “big Autism” and all, that’s not really my point. More my own naivety. We’d like to think of Autism Speaks’ walk-a-thons and other fundraising as being organized by the communities. But this is a $50M a year charity. That’s just not going to happen with an all volunteer organization.

Are you happy with what the $50M/year organization does? That is another question.

Write a quick comment | View 6 more comment(s).

Two stories out today show

In the first (see Teacher gets lengthy suspension after student put in box) as part of a “time out” punishment. A large cardboard box was found in a classroom. When a parent asked what the box was for, she was told that the box was for time outs for another child. The parent took a picture to document the box. Good thing as shortly afterwards the box was removed.

According to the story that goes along with the video:

A middle school special education teacher accused of forcing a child with special needs into a cardboard box as punishment has been suspended without pay.

In another school-related story, a high school in Texas handed out year books that cited the disabilities of the special education students attending, including referring to some as mentally retarded:

The specific disabilties of students were cited in the yearbook, with some labeled as “both blind and deaf, as well as mentally retarded,” KDFW reported.

The yearbooks were collected and new ones are being issued.

note: this was edited after publication to improve the formatting of this article on the main LBRB page.

Write a quick comment

The Autistic Self Advocacy Network has called an urgent action alert to call for the ban of aversives in the state of Massachusetts, home of the Judge Rotenberg Center. Residents of Massachusetts can call their state senators and support legislation that could stop the use of aversives.

Ask Your Senators for a
Ban on Aversives in Massachusetts!

Last Friday, Massachusetts State Senator Brian Joyce filed two amendments to the Senate Ways & Means Budget currently pending in the Massachusetts State Senate. One of these amendments calls for a complete ban of aversives – also called “aversive therapy” – while the other would restrict their use. If passed, this would ban or limit the use of practices like the contingent electric shock used at the Judge Rotenberg Center (JRC).

But it takes more than one senator to get an amendment passed. We urge you to contact your Massachusetts State Senator and ask him or her to sign on to the Joyce amendments banning or restricting the use of aversives. But please hurry, the deadline has been extended to noon (12pm EST) on May 23rd!

You can find your Senator’s phone number or email at http://www.malegislature.gov/People/Senate. Because of the urgent deadline, calling their office will be the most effective way to contact them.

Thank you for your support for the rights and safety of Autistics and other people with disabilities in the great state of Massachusetts.

Nothing About Us, Without Us!

Sincerely,
Autistic Self Advocacy Network
http://autisticadvocacy.org/

Write a quick comment

There is much discussion on the DSM 5 at IMFAR. This includes talks from Sue Swedo at the stakeholder’s lunch and a formal (and highly attended) conference talk The Thinking Person’s Guide to Autism has four of their editors at the conference and has an article on the DSM 5 discussion.

IMFAR 2012: An Update on the ASD DSM-5 Recommendations

We spoke with Sue [Swedo] at length both at the IMFAR Stakeholder’s lunch, and after her IMFAR talk. Any errors or omissions in this summary of her talk are on TPGA. -SR

More at the TPGA site.

Write a quick comment

Here are some reports that have been written on IMFAR so far. IMFAR is a three day conference, with one pre-conference day. Saturday (tomorrow) is the last day.

Thinking Person’s Guide to Autism

IMFAR 2012: Genetic Variants in ASD

IMFAR 2012: On Communicating Autism Science

Autism: Friendships in Adolescence from IMFAR 2012

IMFAR 2012 Press Conference

Autism Science Foundation

Reactions from IMFAR Travel Grantees: Day 2

Reactions from IMFAR Travel Grantees: Day 1

Follow Twitter streams

IMFAR

#IMFAR2012

Edit to add:

Here’s an article by Estee Klar:
My First Impressions of IMFAR 2012

I hope to have some articles by autistics soon.

Write a quick comment | View 7 more comment(s).

It’s been over 25 years since Ivar Lovaas published a study on Applied Behavioral Analysis which would made ABA therapy (for good or bad, you can find vocal proponents of both opinions) the “gold standard” for young autistic children.

Now, some of the children who participated in the early studies and ABA programs are adults. Bryna Siegel, a professor at the Univerisity of California at San Francisco is presenting preliminary results on adult outcomes at IMFAR. I’ve been waiting for the abstract for some time since reading the title of the talk online. Unfortunately, the work is obviously very preliminary. One can hope that more will be presented at IMFAR and more will come.

B. Siegel1, T. Sendowski2, O. Park3, S. Radhakrishna3 and W. Phuchareon3, (1)University of California, San Francisco, University of California, San Francisco, San Francisco, CA, United States, (2)Child and Adolescent Psychiatry, University of California, San Francisco, San Francisco, CA, (3)Children’s Center at Langley Porter, Child and Adolescent Psychatiry, University of California, San Francisco, San Francisco, CA

Title: Adult Outcomes in Autism: A Prospective Longitudinal Examination of the Effects of Early Intensive Intervention: A 20 Year Follow-Up

Background: In the past 15 years, estimates of autism prevalence have increased to as high as 1:110 presently (2008, CDC). Utilization of special education, speech and language therapies, social skills training and occupational therapy by individuals with autism has increased dramatically, yet little is known about long-term effectiveness of this costly resource allocation (GAO, 2005). It is known that 95% of California adults with autism are unemployed and not living independently (SMART, 2010). Young adults with autism who are now 21-26 years old are the first cohort to have received early intensive behavioral interventions (EIBI), now the legal standard for a ‘free and appropriate public education’ (IDEA, 2004). It is now critical to ascertain whether this cohort, the first to receive EIBI, is better prepared for adulthood as it makes this transition.

Objectives: This preliminary study will examine whether 1) pre-treatment diagnosis and cognitive characteristics, or 2) receipt of EIBI or not, accounts for the most variance in adult outcomes.

Methods: We used a prospective longitudinal methodology relying on archival data from the UCSF Autism Archive. The archive includes initial diagnostic and cognitive assessments gathered by primary clinicians when these, now adult, subjects were 0-5 years old, as well as data indicating whether EIBI or less intensive interventions were then being used. Ss were re-contacted as adults, along with their caregivers, and new diagnostic (DSM-IV, ADOS), adaptive behavior (VABS), and status variables (living situation, employment) were collected. Data on interim treatment intervention were collected based on caregiver report. Intensity of services were indexed by numbers of a) one-to-one treatment hours per week b) total treatment hours, and c) ratio of one-to-one hours/ total treatment hours. This is an important study as pre-treatment data and treatment status data were collected prospectively.

Results: To date, we have identified 49 Ss initially seen at 0-5 years of age, before initiation of any EIBI who remain in our catchment area. We so far, have re-contacted 8 families scheduled for the post-test assessment. Telephone interviewing suggests some of these Ss were 1) low functioning initially, received EIBI and remain low functioning, 2) that some were high functioning, did not receive EIBI and remain high functioning, and 3) that some were high functioning, received EIBI and remain high functioning.

Conclusions: We will present preliminary findings on a small sample of at least 20 Ss that represent these three groups and provide preliminary discussion of pre-test and treatment data that may explain outcomes.

Write a quick comment | View 1 more comment(s).

This action alert is from ASAN:

Urge For the Ban on Aversives in Massachusetts!

Tomorrow, May 18th, 2012, Massachusetts State Senator Brian Joyce will be filing two amendments to the Senate Ways & Means Budget currently pending in the Massachusetts State Senate. One of these amendments calls for a complete ban of aversives – also called “aversive therapy” – while the other would restrict their use. If passed, this would ban or limit the use of practices like the contingent electric shock used at the Judge Rotenberg Center (JRC).

But it takes more than one senator to get an amendment passed. We urge you to contact your Massachusetts State Senator and ask him or her to sign on to the Joyce amendments banning or restricting the use of aversives. But please hurry- they have to have signed on by the noon (12pm EST), May 18th deadline!

You can find your Senator’s phone number or email at http://www.malegislature.gov/People/Senate. Because of the urgent deadline, calling their office will be the most effective way to contact them.

Thank you for your support for the rights and safety of Autistics and other people with disabilities in the great state of Massachusetts.

Nothing About Us, Without Us!

Sincerely,
Autistic Self Advocacy Network
http://autisticadvocacy.org

Write a quick comment

Studies presented at IMFAR this year addresses the problem of how to effectively screen children for autism in underserved communities. Many studies have shown that the rates of identified autism are lower in racial and ethnic minorities and those with lower socio-economic status. For example, CDC autism prevalence estimates routinely show lower estimated prevalence for Hispanic or African American students. This suggests the possibility that a large fraction of the autism population remains unidentified and under served.

The study authors propose using teachers to actively participate in the community screening efforts. From Study Finds Early Childhood Educators Can Effectively Screen Students For Autism In Underserved Communities

In a study with national implications, researchers at Children’s Specialized Hospital found that in underserved communities using teachers to screen for autism in preschools and day care centers is more effective than the current system that relies solely on parents and pediatricians to identify the disorder.

Two studies from this group presented at IMFAR are: Parent-Teacher Agreement on An Autism Screener in An Underserved Preschool Population and Feasibility of Autism Screening in Underserved Populations.

From the news story:

“We found that unless we go out into underserved communities we are going to be missing many children who have autism,” said lead researcher Dr. Yvette Janvier, developmental/behavioral pediatrician and medical director – Toms River, Children’s Specialized Hospital. “This is the first study to look at using teachers in preschools and day care centers to screen for autism.”

The idea is so simple. Probably not surprising to many of us. From my own experience, I recall early intervention therapists telling us that they couldn’t tell parents about suspicions of autism for the children. They weren’t just not being engaged in the screening process, they were being told to keep quiet.

If the name of Dr. Yvette Janvier sounds familiar, she was a member of the previous Interagency Autism Coordinating Committee (IACC).

Write a quick comment

The Implications of DSM V: Changes in Diagnostic Outcomes in An Adult Clinical Sample Re-Diagnosed According to the Proposed DSM V is a talk to be given at IMFAR on Saturday. Given the very high focus on the DSM V from the online autism community, I had hope that this study might shed some light on the topic. IMFAR is a forum for preliminary work, and the abstract in this case shows that:

Background: Major changes in diagnostic criteria are proposed for DSM-V, including the collapsing of autistic disorder, Asperger’s disorder and PDD-NOS into a single diagnosis; ‘autism spectrum disorder (ASD)’. The effects of these changes are as yet unclear; will individuals diagnosed by current criteria still meet diagnostic criteria with the proposed diagnostic scheme? While some work has been reported addressing this issue in children, no studies in adults have been published to date. Adults, including those first receiving a diagnosis in adulthood, are an important, and somewhat neglected, group in autism spectrum clinical services and research and are the focus for the present study.
Objectives: To review the effect of proposed DSM V diagnostic algorithms on the diagnostic outcome of a clinical sample of patients assessed for ASD in adulthood.

Methods: Diagnostic information was reviewed for 100 consecutive adult patients who attended the Behavioural Genetics Clinic, a specialist clinic providing assessment of ASD at the Maudsley Hospital, London. Original diagnosis was made in accordance with the ICD-10 criteria. Diagnostic assessment included a detailed neuropsychiatric interview, Autism Diagnostic Interview-Revised (ADI-R) and / or Autism Diagnostic Observation Schedule (ADOS) pending consent to contact parents/parental availability and physical examination. Information from the ICD 10 algorithm, ADI-R, ADOS and neuropsychiatric assessment reports was used to recode diagnostic outcomes in accordance with the proposed DSM 5 ASD algorithm as posted by the American Psychiatric Association.

Results: Data will be presented showing the degree of agreement between current ICD 10 diagnoses (Asperger’s Syndrome, Childhood Autism, Atypical Autism, Pervasive Developmental Disorder-not otherwise specified) and the proposed new DSM 5 diagnosis of ASD.

Conclusions: Implications for proposed changes to diagnostic criteria will be highlighted.

The abstract tells us little about results, just that they will be “presented showing the degree of agreement between current ICD 10 diagnoses (Asperger’s Syndrome, Childhood Autism, Atypical Autism, Pervasive Developmental Disorder-not otherwise specified) and the proposed new DSM 5 diagnosis of ASD”

Write a quick comment

The International Meeting for Autism Research (IMFAR) started on Wednesday with a press conference and a pre-conference program focused on stakeholders. I was fortunate to be able to attend last year, but not this year. I did call in to the press conference, though and it brought back some of the excitement for me.

Before going on, note that the press conference is covered at the Thinking Person’s Guide to Autism (by people who actually attended!) as IMFAR 2012 Press Conference

The press conference highlights a number of studies which are about to be presented at the conference. It was stressed that IMFAR is a conference where the abstracts are reviewed before being approved, but the studies are not peer-reviewed as in a journal. It is a conference for very new results.

One study highlighted was Beyond ASD: Developmental Outcomes of High Risk Siblings. This is a follow on study to the well publicized baby siblings study that found about 19% recurrence risk for baby siblings of autistic children. This is the study that looks at the other 81%, the kids who did not get an autism diagnosis. Short answer—even among the children who did not get an autism diagnosis, the baby siblings had more autistic traits than children who were not baby siblings of autistics.

Here’s the conclusion from the abstract:

Conclusions: At three years, HR [high Risk]children without an ASD had higher levels of ADOS symptom severity, and lower levels of developmental functioning than LR [Low Risk]children. They were more likely to occupy clusters characterized by lower levels of developmental functioning, and less likely to occupy a cluster characterized by higher levels of developmental functioning and low levels of symptom severity. Descriptively, two-thirds of HR children occupied Clusters 1 and 2, characterized by normative outcomes, whereas one third occupied Clusters 3, 4, and 5, characterized by elevated ADOS severity, lower developmental quotients, or both. These results suggest an early ‘broader autism phenotype’ in HR siblings characterized by ASD symptoms sub-threshold for diagnosis and/or developmental delays.

and the summary:

A new study presented at the International Meeting for Autism Research examined the development of the younger siblings of children with an Autism Spectrum Disorder (ASD). ASDs are developmental conditions characterized by problems with interaction, communication and repetitive behaviors. Previously, an international consortium of researchers found that almost one in five of the younger siblings of children with an ASD themselves developed an ASD. The researchers’ new findings suggest that of the younger siblings who did not develop an ASD, one in three faces challenges at three years of age.

The challenges faced by these younger siblings of children with ASD include slight delays in verbal and nonverbal functioning and somewhat elevated levels of autism-related characteristics. Examples of a child’s autism-related characteristics—which are not as severe as those of children with an ASD—include lower levels of back-and-forth play with others, and lower levels of pointing to express interest in what is going on around them. Overall, the researchers say, the majority of high-risk siblings are developing typically at three years of age, but a minority face challenges that appear to reflect subtler forms of ASD-related problems. Follow-up of these children through school age is necessary to understand their long-term outcomes.

The second study highlighted was Shared Decision Making (SDM) and the Treatment of Autism Spectrum Disorders (ASDs). My guess is that the themes presented in the summary below will not come as a great surprise to those who have read parent narratives on the internet. I.e. that parents look to pediatricians for treatment options for their autistic kids, but the doctors often don’t see autism treatment to be something they can do.

The goal of this qualitative study was to describe factors influencing shared decision making for treatment decisions by pediatricians and parents of children with autism spectrum disorders (ASD). We conducted in-depth interviews of 20 pediatricians and 20 parents of children with ASD 2-5 years of age. The analysis of the interview transcripts revealed that many pediatricians did not view treatment for autism spectrum disorders to be within their scope of practice or competence. Parents did not view their pediatrician as knowledgeable or invested in making treatment recommendations. We also found that parents often independently pursue treatments, not benefiting from professional guidance regarding safety and effectiveness. Results from this study indicate substantial barriers to shared decision making between pediatricians and families in the care of autism. Research is needed in order to understand how best to help 1) parents have realistic expectations of their pediatrician and 2) improve training of pediatricians to be effective partners in care of children with ASDs and their families

The third highlighted study was Oxytocin’s Impact on Social Cognitive Brain Function in Youth with ASD. The study member who presented this for the study called it “very exciting and very preliminary”. Two features of this study stand out immediately: (1) it is a double-blind, crossover, randomized control study and (2) it includes fMRI (functional magnetic resonance imaging).

Here is the summary:

We are presenting the preliminary data from the first ever double blind, placebo controlled study of changes in brain activity in children with an ASD (ages 7-18) after a single dose of oxytocin. The initial results indicate that oxytocin, administered via nasal spray prior to the scan, increased activity in brain regions known to process social information. Oxytocin is a naturally occurring substance that is produced in the brain and plays a role in regulating social abilities.

These results provide the first, critical steps towards devising more effective treatments for the core social deficits in autism which may involve a combination of validated clinical interventions with an administration of oxytocin. Such a treatment approach will fundamentally alter for the better our understanding of autism and its treatment.

There were two more studies highlighted at the press conference but, I’m sorry to say, I was not able to listen to those presentations.

Measuring Interactive Developmental Pathways in ASD: A Dual-Domain Latent Growth Curve Model Symptoms, Diagnosis & Phenotype – Cognition & Behavior: Early ASD

As children with autism spectrum disorders (ASD) grow up, they embark on quite different developmental pathways. Some individuals learn to live independently, maintain friendships, and find work, many require some support in their daily lives, and still others experience many challenges. Understanding how very young children with ASD develop important early skills can provide vital clues that might help predict these various pathways. For example, researchers have suggested that greater social interest and awareness in children with ASD may have a positive impact on language, which in turn may have a positive influence on other aspects of learning and development. This model of “cascading” effects is intuitively appealing but has not been validated in ASD. The Canadian “Pathways in ASD” Study (funded by CIHR and other provincial governments and foundations) is uniquely able to shed light on this issue as it is the largest prospective follow-up study of very young children with this disorder. As part of this study, we used information about 365 2-to-4-year-olds with ASD to examine whether such cascades occurred across early social competence and language abilities in the year after diagnosis. On average, the children made significant progress in social competence and remarkable gains in language abilities over that year. Within this one-year period, greater change in social competence in the first year was associated with more growth in language skills. However the reverse wasn’t true: early language ability had a much smaller effect on changes in children’s social competence. These findings therefore support the idea of early developmental cascade effects. Early advantages and gains in social competence may lead to advantages in other domains. However, children whose very early social skills lag farther behind at time of diagnosis are also less likely to show language progress. This study highlights the importance of early interventions that focus on emerging social competence (versus only language skills), as these are likely to “spill over” across other developmental pathways.

and

Head Lag in Infants At Risk for Autism

This new prospective study of six-month-old infants at high genetic risk for autism identified weak head and neck control as a red flag for autism spectrum disorder (ASD) and language and/or social developmental delays. Researchers at the Kennedy Krieger Institute concluded that a simple “pull-to-sit” task could be added to existing developmental screenings at pediatric well visits to improve early detection of developmental delays.

While previous studies have shown that head lag indicates developmental delays in children with cerebral palsy and preterm infants, postural control in infants at risk for ASD had not been examined. In this research, Dr. Landa and her team assessed infants in a “pull-to-sit” task, a simple measure of postural control in infants. The findings suggest that motor delays may have an important impact on child development.

Four of the editors from The Thinking Person’s Guide to Autism are at IMFAR this year. Their post on the press conference is already up: IMFAR 2012 Press Conference

Write a quick comment