Study Raises Questions About Promising Autism Therapy
by Blythe Bernhard from Disability Scoop
A large clinical trial of a heralded early intervention therapy for autism shows the treatment might not be as advantageous as previously believed.
Young children with autism receiving the therapy known as Early Start Denver Model, or ESDM, did show larger gains in language skills compared to children given other behavior therapies, according to the study published recently in the Journal of the American Academy of Child and Adolescent Psychiatry.
But all of the children in the study showed improvements in language, cognitive and social skills regardless of the type of treatment, signaling a benefit to early intervention generally rather than an overall benefit to any particular method, the researchers said.
“There was statistically little difference between conventional and ESDM therapies for the children,” said Richard O. Williams, a Colorado geneticist who studies autism, but was not involved in the study. “The take home here is that most any intervention methodology will have some benefit. Parents should try to identify programs that attempt to address their concerns, location to services and budget.”
ESDM is based on the theory of applied behavior analysis. Children as young as 12 months are encouraged by therapists and parents to develop their language and social skills through play. The method can be offered in a clinic but is more commonly woven into the child’s natural routines in the home or day care.
The study involved 118 children with autism ages 14 months to 2 years old at three sites across the U.S. The children were followed through their experiences either in ESDM therapy or other clinic-based interventions for more than two years. Those in the ESDM group received about 15 hours a week of play therapy in their homes or day-care centers, while those in the clinic group received varying lengths of therapy depending on the study site.
Researchers found that children in the ESDM group made significantly greater improvements in language skills compared to children in the clinic or community interventions when averaged across the three sites.
“We were very pleased with the results of the study,” said Geraldine Dawson, a professor of psychiatry and director of the Duke Center for Autism and Brain Development. Dawson helped develop ESDM in the 1980s and is a co-author of the study.
Although there were language advantages for the ESDM cohort, children in the study’s control group who received community-based therapies also showed significant and similar gains in their cognitive and social skills, Dawson said.
Most of the children in the study increased their IQ scores by an average of about 17 points over the course of the research.
“We think that’s good news,” Dawson said. “Children in the community are now receiving more intensive interventions.”
Some critics of the ESDM research said it did not fully replicate the success of earlier published findings. The significant language gains in the ESDM group were seen in only two out of three of the study sites, prompting further questions.
But the study’s authors and other advocates said the research reveals more about the overall progress in early interventions.
“It is key to note that at all three sites, the control group showed significant improvement. This may mean that community treatment approaches are getting better,” said Thomas Frazier, chief science officer for Autism Speaks, which provided some grant funding for the research.
Asperger’s Family Support Group – April 11, May 9, 7:30 to 9 pm (Room 143). Meets monthly.
General Support Group – April 9, May 7, 7:00-8:30 pm in Room 143. An open discussion support group for families.
MONTHLY SPEAKER SERIES:
April 3, 7:00-9:00pm – Your Child’s Been Diagnosed with Autism. Now What? Our panel of parents who have children ranging in age from elementary through adult share their experiences from the ASD journey with you.
May 15, 7:00-9:00pm – Care for the Caregiver: How to Nurture Yourself AND Your Child with speakers from The Parents Place of Maryland.
June 4, 7:00-9:00pm – Cannabis and Autism. Speakers: Dr. Leslie Apgar, Greenhouse Wellness, and Dr. Lynn Shumake Vitascript.
TRANSITION JOURNEY, PARENT TO PARENT – These monthly meetings, run by the HCPSS Family Support & Resource Center and hosted at HCAS, are perfect for families who have a student with a disability preparing to age out of the school system and enter the world of adult services. For information, call the HCPSS Family Support & Resource Center at 410 313-7161. Spring dates: April 24 (7-8:30pm), May 29 (7-8:30pm)
All meetings held at HCAS, 9770 Patuxent Woods Drive, Columbia, MD
“Community-based” gets a new definition. Is there new money??
You come in to work the 3p-11p shift at a job you love. As you enter the house you can kinda guess how the day went by the smell. A pine scent could mean there’s been a mess that needed to be cleaned up. Food smells could mean we’re on schedule but maybe a little too early since John, with hand-over-hand help, was supposed to help support staff make dinner. You roll your eyes because you worked all last week with John to make dinner and you’re frustrated because they didn’t take the time. Body smells are the worst because you don’t know if someone’s had a recent accident or if they just have not been tended to all day, OR, were they not tended to in a way you find acceptable. Did they take John to church earlier as written in the schedule? Did they play the soothing music during mindfulness hour so Vincent has a chance to relax? Charles enjoys calling his mother. Did they help him dial the phone in order to speak with her?
As you sit at the kitchen counter you go through the daily log and see that it hasn’t been completed so you start asking questions about what John, Vincent, and Charles have been doing today and their mood. Are they happy? Is anyone in distress? What hygiene and household needs haven’t been taken care of? No matter what is outstanding you will take care of it. You don’t need direction. You have read John, Vincent, and Charles’ support plans several times and even helped draft it when you attended their IP meetings. You communicate with the family and ensure that they feel like their loved ones are safe.
These fantastical support staff exist. They, and organization administrators, work hard to provide a home-like setting for disabled peoples. Integrated community is expected. As the infrastructure (utilities, licenses, upkeep, etc.) increases so does the cost of living for workers who are directly responsible for implementing support plans on a day-to-day basis.
Norms and expectations for community-based services continue to evolve. According to Disability Scoop
Federal officials have issued long-awaited guidance to help states determine what living arrangements for people with disabilities are considered community-based rather than institutional.
The new guidelines from the Centers for Medicare and Medicaid Services clarify a 2014 rule outlining criteria for programs provided through Medicaid home- and community-based services waivers.
The rule calls for home- and community-based settings to provide full access to the community as well as offer privacy, foster independence and allow people with disabilities to make their own choices about services and providers. The criteria apply to homes, day and job-training programs and other non-residential offerings provided through waivers.
The article goes on to say
CMS still defines settings as isolating and in need of further review if they offer limited opportunity to interact with the broader community. Other criteria include restricted choices for services or outside activities and locations that are “separate and apart” from the community, without opportunity for participation.
As many in the field have been working for years toward this goal, how does the aging and disabilities community incorporate expanding expectations of community integration into rural and farm areas? How does CMS plan to adjust funding to parody expectations and cost of living?
We’ve previously talked about ableism and the assumption that having a disability or mental illness means you’re a less capable person. Not only that, ableism can also come from being misguided and take the form of pity. Feeling sorry for someone because they are mentally or physically atypical. If we have learned nothing Seth, we’ve learned not to make assumptions or feel sorry for him. When he was 5 and started school teaching staff assumed he couldn’t read because he wouldn’t read for them. They assumed he would never learn to communicate in complete sentences. He could read at 5 and he continues to grow academically. Sometimes he won’t stop talking (lol). And don’t feel sorry for him because he’s autistic. Seth the disco teacher is doing just fine attending dance recitals, doing knock-knock jokes stand-up. He’s living his best life.
In this featured podcast Collin Meeks from Maryland Financial Advocates interviews Andrew Komarow, MSFS. Andrew is not only a certified financial planner he offers a fresh perspective as someone also diagnosed with autism. Financial planning across the autism spectrum
Yes! Although it may sound like an odd word it is a concept that has gained lots of legitimacy. Ableism is a set of values that places non-disabled individuals above disabled individuals. It is the belief that certain talents or tasks can only be accomplished by people without a diagnosis. Its the assumption that someone with a diagnosis cannot do something without any evidence or support.
How does ableism look in everyday life
These thoughts and assumptions are not always meant to hurt. They are often made by well-meaning non-disabled individuals who think they are helping. In actuality, they are assuming the disabled person needs them and cannot do for themselves. Or, they may simply not quite understand the difference between different diagnoses.
A frequent abelist assumption made is that autism and intellectual disability are the same. In this case, the person assumes that an autistic person is somehow intellectually inferior to them simply based on the diagnosis when autism is actually a neurological disorder that does not necessarily impact intelligence. It is possible for an autistic person to have an intellectual disability but assuming an autistic person lacks intellectual ability is ableism.
Another, and more insidious, example of abelism is non-disabled people making decisions for disabled people without involving them or not making it possible for the disabled to have a voice. Part of excluding disabled people involves not factoring in the logistics of inclusion. Interpreters, support staff, sensory consideration, adaptive equipment, etc. We cannot expect someone to have a voice when we make it impossible for them to show up to speak.
To help rid the community of abelism, start with communication and sharing. Communicate with disabled individuals and share in their lives and share the power to impact their lives. Don’t feel as if you as the non-disabled person need to protect them. If you are disabled communicate (in your way) what you want. Share your feelings about both what you can do and what you need. Don’t be afraid to be an active participant in your care and contribute to the community you are part of.
Systematic, Therapeutic, Assessment, Resource and Treatment (START)
The DDA will be piloting the Systematic, Therapeutic, Assessment, Resources and Treatment (START) program in the southern region. Currently there is a professional learning community (PLC) cohort beginning on Jan. 17 for those providers within the southern region that signed up to participate in this learning community. This PLC is designed to give providers more information and understanding of what the START program is and how it will be implemented within the southern region during the pilot phase. A request for interest (RFI) will be coming out within the next few months.
The START model was developed by Dr. Joan Beasley and her team at the Institute on Disability/UCED at the University of New Hampshire. It serves people diagnosed with intellectual/developmental disabilities (IDD) and co-occurring behavioral health conditions. This comprehensive model of service supports optimizes independence, treatment and community living for individuals with IDD and behavioral health needs. It promotes person-centered approaches and training for individuals, families, and caregivers by applying core principles of positive psychology, utilization of therapeutic tools, provision of multi-modal clinical assessments, promoting enjoyable therapeutic recreational experiences and optional utilization of existing resources through:
– Linkages with partners
– Engagement of service user, family and other circles of support involvement
– Promotion of improved expertise across systems of care
– The utilization of services designed to fill gaps