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Schedule Now Available for October Housing Conference!

Almost 200 parents, providers and advocates have already registered to join us at the University of Pennsylvania for our October 14 conference, "Solving the Housing Crisis for Adults with Developmental and Intellectual Disabilities: Challenges, Opportunities and Innovation." We have space for 100 more; if you want to see the full agenda before you sign up, check it out here.

Registration information is available here. Hope to see you!


Registration Open for Our October Housing Conference!

Together with another parent advocacy group, Families CCAN: Families Creating Communities for Adults with Special Needs, EASI is hosting our second conference: "Solving the Housing Crisis for Adults with Developmental and Intellectual Disabilities: Challenges, Opportunities and Innovation," which will take place on Wednesday, October 14 at the Perelman Quadrangle at the University of Pennsylvania.

Nothing panics parents of children with I/DD more than the thought of where they will live when they get older. We are thrilled at the line-up of speakers we have assembled to address this critical issue, including Pennsylvania's new Deputy Secretary of the Office of Developmental Programs, Nancy Thaler, and our keynote speaker, Desiree Kameka, the National Coordinator of the Coalition for Community Choice. Attendees will have the opportunity to network with other families, service providers, advocacy organizations, housing developers, government officials, special needs attorneys and other stakeholders.

More details -- including a list of speakers and registration info -- is available here. Please join us!


New Book by EASI President Amy Lutz!

Amy Lutz's book Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, was published in April by Vanderbilt University Press.

Amy co-founded EASI Foundation after she and her husband spent almost a decade struggling to manage the aggressive and self-injurious behaviors of their oldest son Jonah, now 15. After countless behavior plans, multiple medication trials and even an almost year-long hospitalization at one of the nation's most respected facilities all failed to control his dangerous behaviors, Jonah was finally stabilized with electroconvulsive therapy (ECT). Each Day I Like It Better recounts their ECT journey, as well as those of several other families whose children found relief from debilitating psychiatric illness through ECT.

ECT providers that treat young patients are listed in our resource guide. For more information about pediatric ECT, including an extensive bibliography of the psychiatric literature documenting the safety and efficacy of ECT in this population, see Amy's website


New Study Finds Alarming Level of Aggression in Autistic Children

A study just published in the journal Research in Autism Spectrum Disorders found that a staggering 53% of over 1500 autistic subjects (aged 2 to 17) exhibited aggressive behaviors.  We asked the lead author, Dr. Micah O. Mazurek, to explain the significance of his data.

EASI:  Does the fact that close to 50% of the subjects across all age groups exhibit aggressive behaviors suggest to you that these behaviors persist over time - i.e., that it's likely that aggressive autistic children will grow into aggressive autistic adults?

Dr. Mazurek: Yes, I agree that these percentages across time (particularly among older adolescents) are quite alarming.  The effects of aggression can be more serious as individuals reach adolescence and adulthood, so we think this finding is certainly concerning.  I would like to mention, though, that this was a cross-sectional study.  We weren't able to follow the same individuals over time to determine the long-term course of aggression for an individual child.  It is also important to note that our measure of aggression was very broad, so it is likely that the severity ranged from mild to more severe (among children who were classified as having aggression).

EASI: Considering these subjects are all part of the Autism Treatment Network, is it fair to assume all the children were being treated for their aggressive behaviors? Given, as mentioned above, the small decrease in aggression found in older children, would it be fair to say that current treatment protocols for aggression (behavior plans, antipsychotics, etc.) are not very effective?

Dr. Mazurek: Actually, the data for this study were collected when children were first enrolled in the ATN (their "baseline" data).  For this study, we didn't collect data on treatments received prior to their enrollment, so we can't really address the question of treatment effects.  Because the ATN is a longitudinal project, however, our next step in this line of research is to examine the course of aggression over time, predictors of improvement (or worsening) of aggression, and response to treatments.

EASI: What implications do your findings have for the health care system - in other words, how are we as a nation going to care for such an enormous population of aggressive, autistic adults?

Dr. Mazurek: Aggression is a serious issue - with obvious negative effects for the individual as well as his/her family and community.  Not only does aggression result in physical harm, but it can lead to poor long-term outcomes (increased risk of out-of-home placement, increased use of psychotropic medication, increased family stress, caregiver/teacher burnout, etc).  Aggression and other challenging behaviors also interfere with an individual's ability to participate and benefit from therapies and educational services, which also affects long-term success.  For all these reasons, I think we need to be focusing much more attention on identifying underlying mechanisms of aggression in subsets of children, and developing prevention and treatments that are individualized to address those particular mechanisms.

EASI: Are you currently working on, or do you plan on working on, additional studies examining severity of or effective treatments for aggression?

Dr. Mazurek: Yes - I am very interested in continuing to pursue this research, and am hopeful that our work will provide some answers that may help families and children in the future.  My colleagues and I published the results of another large-scale study of prevalence and predictors of aggression in children with ASD in 2011, and we are continuing to study the long-term course and outcomes of aggression across ages and functional levels.  
We are also very interested in developing or modifying treatments to help address this issue.  For example, we are in the process of completing a clinical trial examining the effectiveness of an adapted therapy for adolescents with ASD and aggression and their families.  We hope to be able to share the results of this study in the near future.


Does the Neurodiversity Movement Represent Our Kids?

I'm sure I'm not the only parent of a severely autistic kid flabbergasted every time I encounter the neurodiversity claim that autism isn't a disability, just a different way of seeing the world.  When you've spent the entire day trying to keep your son from ripping your hair out, bloodying his own nose or kicking a hole in the wall (as we used to do), this type of argument seems so patently false, such a far-fetched fairy tale, it boggles the mind that anyone could not only believe this, but attack those who don't as haters of autistics.

This week, I addressed this in an article for Slate.  And although I expected it to generate a lot of controversy and pushback from the neurodiversity camp, I was surprised at how overwhelmingly positive the comments have been.  Apparently, it's obvious to rational people that kids whose dangerous behaviors severely compromise their quality of life and that of their families deserve better treatments.  Combined with the recent hidden camera video in which an "autistic" child (really an actor) was defended in a restaurant, it's almost enough to restore my faith in humanity!