Feeds:
Posts
Comments

Posts Tagged ‘autism’

By Roseann Schaaf, PhD, OTR/L, FAOTA

schaaf-kids

Courtesy: Roseann Schaaf, PhD

Life is a sensory experience! We touch, hear, feel our muscles, move our bodies, taste, and smell and use vision to take in information from the environment, process and integrate it to act and interact as well as to learn and grow. Upwards of 80% of persons with Autism Spectrum Disorder (ASD) experience differences in the way they perceive and process sensory information. This impacts the ways in which they participate in functional tasks such as speaking, moving, eating, dressing, interacting with others, playing, learning and working. These sensory features are now part of the diagnosis of autism in the DSM5.

As an occupational therapist and a neuroscientist, my interest in the sensory features of ASD developed from working with children and families who often articulated how decreased sensory perception, integration or sensory sensitivities affected their everyday lives. As we worked together to improve independence and skill in daily life activities, success at school and to foster social engagement, it became clear that we needed to address these sensory differences in order to achieve their desired goals. We used the principles of sensory integration (Ayres, 2005; Bundy, et al, 2001) to target these issues and saw positive results! To share our knowledge and test this approach we received funding to write a manualized protocol (Schaaf & Mailloux, 2015), test its effectiveness, and publish our findings (Schaaf, et al, 2014). This study showed that children with ASD who received the occupational therapy using sensory integration treatment performed significantly better in functional skills and individual goals compared to controls.

schaaf-kids2

Courtesy: Roseann Schaaf, PhD

We are now conducting a larger, more comprehensive study and are seeking families who have a child with ASD aged 6-9.5 years who may want to participate in the study. This study is a collaboration with Thomas Jefferson University and Albert Einstein Medical Center and is located in the Bronx, NY. Children will receive a full diagnostic battery and then be randomized to one of the treatments (Sensory Integration or a behavioral intervention) and will receive 3 one-hour sessions/week for a total of 30 treatments. Parents must be willing to travel to Albert Einstein College of Medicine (1225 Morris Park Avenue, Suite 1-C, Bronx, NY 10461). Participants will receive a total of $250 and a report of the child’s performance and assessment data at the end of the study. Children have a 1/3 chance of being randomized into the “No Treatment” arm of the study but will still receive all assessments and stipends for participation.

The report will indicate whether the child performed below, at, or above average in the last round of the following tests:

  • Wechsler Abbreviated Scale of Intelligence (WASI-II)
  • Autism Diagnostic Observation Schedule (ADOS-2)
  • Sensory Integration and Praxis Tests (SIPT)
  • Assessment of Motor and Process Skills (AMPS)
  • Evaluation of Social Interaction (ESI)
  • Aberrant Behavior Checklist (ABC)
  • Restrictive and Repetitive Behaviors Rating Scale Revised (RBS-R)
  • Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT)
  • Pervasive Developmental Disorders Behavioral Inventory
  • Sensory Processing Measure (SPM)

If you know of any families who are interested, please have them contact the study coordinator at 718-862-1817 or sophia.zhou@einstein.yu.edu. Learn more about the lab here and the study here.

Advertisements

Read Full Post »

By Meghan Miller, PhD

Kids playing with a tablet

More and more, researchers and clinicians are thinking about how advances in technology can be leveraged for interventions for children with autism. Tablets, computers, and video games have become increasingly available to children in their daily lives. At the same time, the American Academy of Pediatrics has put forth clear screen time guidelines for children, and many parents worry about their children spending too much time in front of a screen or with devices.

In the autism field, technology is providing promising avenues for early detection and intervention. For example, a recent study describes the use of mobile technology to screen for autism in young children. Others have developed apps and virtual reality systems through which treatments can be delivered. But what good are advances in technology-based interventions if parents aren’t interested in utilizing them?

Researchers at the UC Davis MIND Institute on the UC Davis Medical Center campus in Sacramento are conducting a study of parental perceptions of use of technology in treatment of impulsivity in 4 to 7-year-olds with autism spectrum disorder. Parents of 4 to 7-year-old children who have been diagnosed with autism spectrum disorder (ASD) can participate. Families can expect to complete of several online questionnaires about: Your family, your opinions about technology in treatment, and your child’s behavior. These questionnaires will take about 10 minutes of your time.

Take our survey: http://bit.ly/autismtechsurvey

Learn more here: https://studypages.com/s/technology-in-treatment-study-364017/

Read Full Post »

작가: 송서원

내 생각에, 나는 꽤 평범한 한국의 대학생이지만, 내 삶을 그리 일반적이지 않게 만드는 것이 있다. 바로 나보다 2살 많은 자폐성 장애인인 오빠이다. 좀 낯설게 들릴 수도 있겠지만, 적어도 한국에서 자폐성 장애인의 형제자매로서의 삶은 다른 사람들의 그것과는 상당한 차이가 있다고 본다.

Seowon Song

Seowon Song

2009년 7월의 어느 여름 날, 나는 한국 자폐인 사랑협회(ASK)에서 주최하는 여름 캠프에 참가하게 되었다. 많은 장애 아동과 그 가족이 캠프에 참가했고, 프로그램들은 장애 아동, 부모, 그리고 그 형제자매들을 대상으로 나눠져 있었다. 그 캠프에서 나는 처음으로 비슷한 경험을 가진 비장애 형제들을 만날 수 있었다. 몇몇은 그들의 가족, 특히 그들의 장애 형제들에 대해 말하는 것이 낯설어 보였기 때문에 그 중 가장 나이가 많았던 나는 내 이야기를 먼저 나누며 그 친구들이 자유롭게 얘기할 수 있는 분위기를 만들었다. 깊은 공감을 나타내며 그들이 이야기를 듣고 있을 때, 머뭇거리던 한 꼬마 아이가 나에게 물었다.

“어떻게 그렇게 잘 이해해요?”

그 순간, 처음으로 비장애 형제들이 서로의 경험을 나누고 공감할 수 있는 자조 모임이 필요하다는 것을 깨닫고, 언젠가 한국에 비장애 형제 자조모임을 만들겠다는 결심을 했다.

2016년 1월 초, 나는 내 또래의 비장애 형제 4명을 만났다. 만났던 첫 날, 우리는 얘기하느라 시간이 가는 줄 몰랐고 서로에게 꽤 많은 공통점이 있다는 것을 깨달았다. 각자 형제들의 장애와 증상은 다르지만, 우리는 비슷한 경험과, 걱정과, 생각을 가지고 있었다. 어렸을 때, 가족 내에서 혹은 부모에게서 소외당했다고, 심지어는 무시당했다고 느낀 적이 있었고, 장애 형제들에 대해 이해할 수 없는 부분들이 많았지만 누구에게도 물어볼 수 없었다. 형제와, 그들의 장애와, 부모님에게 분노를 느끼기도 했었고 결국 그 분노가 자기 자신을 향하기도 했다. 또, 나를 포함한 몇몇은 인정 받고 싶은 욕구를 강하게 느끼며 다른 사람들에게 사랑 받기 위해 기대를 충족시키고 뛰어넘으려는 경향을 보였다. 우리의 삶에 대해 얘기하면서, 우리는 “나는”이라는 이름으로 한국의 첫 번째 비장애 형제 자조모임을 만들자고 결심했다.

“나는”이 시작된 후, 다른 비장애 형제들과의 많은 모임을 가졌고, 그 모임에서 우리는 장애 형제와 부모, 그리고 특히 자신에 대해 자유롭게 얘기할 수 있었다. 모임을 통해 많은 이야기들을 모아 2018년 3월 우리의 이야기를 담은 책을 출판하기도 했다. “나는”을 통해 책 출판 이외에도 많은 목표들을 이룰 수 있었다. 첫째로, 한국에는 장애인 당사자들을 위한 관심과 담론 자체가 부족하기 때문에 장애인의 가족, 특히 그들의 형제들에 대한 관심 또한 기대하기 힘든데, “나는”을 통해 장애인의 형제 자매의 존재를 인식시킬 수 있었다. 또한, 살면서 처음으로 장애 형제나 부모가 아닌 우리 자신에 대해 더 많은 관심을 가질 수 있었다. 그 무엇보다 우리 자신에게 집중 하는 것은 살면서 느껴왔던, 그리고 느끼고 있는 수많은 감정들을 마주하고 인정함으로써 비장애 형제로서의 소외감과 불안 등을 해소하는 데 도움이 되었다.

하지만 가장 크게 이룬 것은 바로 우리가 혼자가 아니라는 점을 깨달았다는 점이다. 내 경우, 자폐성 장애인의 동생으로서 분노와 공포, 죄책감을 나 혼자만 느끼고 있는 건 아닐까 생각했고, 아무도 나를 이해하지도, 나에게 공감하지도 않을까봐 걱정했다. 하지만, “나는”을 결성하고 다른 비장애 형제들을 만나면서 내가 혼자가 아니라는 사실을 깨달았다. 또, ‘내가 혼자가 아니라는 사실’을 깨달은 것은 비단 나뿐만이 아니었다. 우리는 다른 많은 비장애 형제들과 같이, “함께”하는 힘으로 좀 더 성숙하기 위한 한 발을 내딛는다.

Read Full Post »

By Seowon Song

In my opinion, I am a quite ordinary university student in South Korea. However, there is a feature that has made my life unusual: my older brother. He is two years older than me, and has autism. This may sound strange, but at least in South Korea, living as a sibling of an autistic person is considerably different from others.

Seowon Song

Seowon Song

A summer day of July 2009, I had a chance to participate a summer camp held by Autism Society Korea (ASK). In the camp, there were many families of children with special needs, and the programs were divided into three parts; for the children, for the parents, and for the siblings. That was the first time for me to meet other children who had had similar experience being siblings without disabilities. Some of them seemed to be unfamiliar with talking about their family members, especially their brothers and sisters. I was the oldest among them, so I shared my story and tried to make them feel free to talk about their experience. When I listened to them and expressed my empathy, a little boy hesitated for a moment and asked me a question.

“How can you understand me that well?”

That was the first moment that I realized the necessity of supporting groups for siblings where they could share their experience and empathize with one another. Also, I made my mind to make a sibling supporting group in South Korea someday.

In the beginning of January 2016, I met four other siblings of my age. On the first day we met, we even lost track of time talking about our lives and realized that we had quite a few things in common. Even though our siblings with special needs had different symptoms and aspects in detail, we had similar experience, concerns, and thoughts. When we were children, we had felt left out in our families or from our parents, and even felt ignored by them. There were a lot of things that we couldn’t understand about our brothers and sisters, but there was almost no one whom we could ask. Some of us used to feel resentment toward our siblings themselves, the disabilities of our siblings, and parents, which led us to feel guilty about the anger. Some people, including me, had a tendency to strongly desire to be acknowledged and used to tried hard to exceed expectations from others to be loved. Talking about our lives, we decided to form the first sibling supporting group in South Korea, and named it as “Nanun,” which means “It’s about me.”

From the beginning, we have had dozens of meetings with other siblings. In the meetings, they felt free to talk about their brothers and sisters, parents, and especially themselves. Having gathered diverse episodes from those meetings, finally, we published a book containing our stories in March 2018. Not only did we get a success in the publication, but we also achieve a lot of things in “Nanun.” Firstly, there is a lack of attention to people with disabilities in South Korea, so it’s hard to expect concerns for their family members, especially the siblings. We made it possible for people to realize the existence of siblings of people with special needs. Additionally, for the first time in our lives, we had a chance to be more concerned with ourselves, not the brothers and sisters or parents. We tried to concentrate on ourselves, face and admit the various emotions. It helped us to relieve our anxiety or alienation as siblings without disabilities.

But the most important thing that we fulfilled was to recognize that we are not alone. In my case, I had felt alone and strange because I had thought that I might be the only one who had anger, fears, and guilt being a sister of an autistic person. I was afraid that there might be no one that understand me and empathize with me. However, forming the supporting group and meeting siblings, I finally realized that I was not the only one. Also, I am not the only one who does not feel alone anymore. Standing with many other siblings, we understand the power of being together and make a next step to be mature.

Read Full Post »

ASF funded fellow Nick Goeden from USC examines the role of the placenta.  

Blog written by Priyanka Shah, ASF intern 

Many researchers are studying various factors during pregnancy that can lead to an increased risk of autism and other neurodevelopmental disorders in children. Maternal infection and inflammation have been shown to be risk factors for autism and schizophrenia. For example, in recent news, we have seen how expecting mothers infected with the Zika virus have given birth to babies with a high-risk for brain damage and other abnormalities. So, studying how maternal health (in this case, a viral infection) affects the fetus can help us predict for possible disorders and possibly even prevent them.

20150116_120652[1]

Nick Goeden, graduate student and lead researcher

In particular, at the University of Southern California, Nick Goeden and colleagues studied how the placenta was affected after the mother experienced inflammation. The placenta is a tissue in a woman’s uterus that provides nourishment to the fetus through the umbilical cord. The placenta also produces an important chemical messenger, called serotonin, which is transmitted to the fetus and plays a role in organizing the brain during development. After birth, it helps regulate emotions and has been implicated in depression and anxiety.

Researchers decided to use a mouse model to see how maternal inflammation can affect the production of serotonin in the placenta and brain development in the fetus. To do this, they used a chemical that induces inflammation in pregnant mice, and mimics flu-like conditions seen in humans. They found that the amount of serotonin in the placenta drastically increased, leading to increased amounts of serotonin in the fetal brain. During brain development, brain cells migrate and become connected together like an electric network. The formation of certain brain cells that specifically help move serotonin around was disrupted, which means that the fetus’ brain became wired differently. Because of this, some of the behaviors serotonin helps control could have been affected. And in fact, other studies have shown how maternal infection during pregnancy can lead to increased anxiety or depression-like symptoms in the offspring.

This study shows that even mild inflammation during pregnancy can induce a series of events that eventually disrupts the development of the fetal brain. Although these children will have a higher risk for known mental disorders such as ASD or schizophrenia, these diagnoses are not guaranteed. Our next steps in this line of research should be to see the long-term effects of inflammation on the serotonin-specific brain cells and related behaviors. Researchers should also look at how other infections and viruses might be changing the production of other chemical messengers or molecules in the placenta. Understanding the biological mechanisms of the placenta and of fetal brain development can help direct new research into prevention and therapy for neurodevelopmental disorders in children.

Read Full Post »

By Matt Carey

A recent effort supported by the Autism Science Foundation sought to gather information on the status and needs of adult autistics. The UJA Adult with ASD Survey used an online survey as part of the Interactive Autism Network (IAN). The survey collection ended December 31st of 2012, but shortly afterwards the results of another IAN based survey were published by a team from Johns Hopkins and the Kennedy Krieger Institute. The paper, The association between bullying and the psychological functioning of children with autism spectrum disorders, was based on a survey of parents of school aged autistic children. This appears to be the same study whose preliminary results were released last year as IAN Research Report: Bullying and Children with ASD. I’ll work from the abstract (below) and the IAN preliminary report both as they are publicly available. And, since the IAN preliminary report is so accessible, I won’t go into great detail here.

The results are not surprising: autistics are bullied more often. While this may not come as a shock, having this data is the first step to effecting change. And, yes, autistics can play the role of the bully, but often with different motivations than their non-autistic peers. This figure from the preliminary report says a great deal: a much higher (about 3x more) percentage of autistics were bullied.

BulliedPastMonthComparison

Those with Asperger syndrome were reported as being bullied more often than those with other ASD diagnoses. The preliminary report also lists behaviors and traits that increased the likelihood of bullying:

•Clumsiness
•Poor hygiene
•Rigid rule keeping (enforcing adults’ rules when other children would not)
•Continuing to talk about a favorite topic even when others are bored or annoyed
•Frequent meltdowns
•Inflexibility or rigidity

Sadly, one group that was frequently bullied was children with ASD who wanted to interact with other children, but had a hard time making friends. Of these, 57% were bullied, compared to only 25% of children who prefer to play alone and 34% of children who will play, but only if approached. The one slightly bright spot was that children who had learned to make friends successfully were bullied at a lower rate: 34%.

While autistics bully more often than their non-autistic peers, they mostly play the role of “bully-victims”. From the preliminary report: Unlike victims who are more passive, bully-victims insult their tormentors or otherwise try to fight back in a way that only makes the situation worse.

Again, IAN has an excellent discussion of this study. It is worth noting that a study creates awareness in the research community and provides the type of data from which questions can be formed. Just as we can hope that this study will spark further work, we can hope that the UJA Adult with ASD Survey will provide a basis for more work, and some solutions to the issues uncovered.

Here is the abstract for the published paper:

OBJECTIVE: : Bullying has become a major national concern, particularly as it affects children with disabilities. The current study aimed to determine the association between psychiatric comorbid conditions, involvement in bullying (victim, bully, or bully-victim), and the immediate psychological correlates of bullying among children with autism spectrum disorders (ASDs).

METHODS: : A national sample of 1221 parents completed a survey dedicated to the bullying and school experiences of their child with ASD, reporting on the immediate consequences of bullying involvement, including their child’s psychological well-being and any psychiatric comorbidity. Multivariate logistic regressions were performed to determine whether specific psychiatric comorbidities were associated with an increased risk of involvement as victim, bully, or bully-victim. Analyses of variance determined the relationship between bullying frequency and psychological functioning. All models adjusted for child and school covariates.

RESULTS: : Children who were frequently victimized were more likely to present with internalizing symptoms, whereas children who frequently bullied others were more likely to exhibit emotion regulation problems. Children who were identified as frequent bully-victims presented with both internalizing symptoms and emotion regulation problems. Children with attention-deficit hyperactivity disorder (ADHD) and depression were more likely to have been victimized, whereas children with conduct disorder (CD) or oppositional defiant disorder (ODD) were more likely to have bullied other children. Children identified as bully-victims were more likely to have ADHD, CD, or ODD.

CONCLUSIONS: : Children with ASDs who had displayed bullying behaviors in the past month exhibited psychological impairments, including psychiatric comorbidity. The frequency of bullying behaviors was significantly associated with the level of impairment.

Read Full Post »

By Melissa Shimek
Melissa Shimek, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a  self-identified individual with autism.
Since attending IMFAR, I have concentrated on some ongoing activities and have taken on some new projects. Firstly, I  continue writing in my blog (as time allows) which I began before the 2012 conference. My writing has benefited from the additional information gained at IMFAR. My viewpoint is enriched and my knowledge base is expanded. I also discovered new topics for exploration. As before the conference, I am still considering continuing my education in the field of neuropsychology at a local university.
This past summer, I had the privilege of addressing a group of college-age individuals on the autism spectrum by participating in the AIM program at Mercyhurst University in Erie, PA. During the session, I was able to elaborate on many of my own experiences with newly acquired insight. Also, using what I learned at IMFAR 2012 as a resource, I kept many in attendance engaged and inquisitive. I have since been approached to be involved with the group annually and to begin work with other currently enrolled AS students at the university.
Recently, I was contacted by a local private non-profit, KaleidAScope, to assist with high school aged support group meetings. The extent of which my services will be utilized is still becoming clear and will undergo continuous change. Eventually, it may encompass more activities with individuals of all ages affiliated with this group.
Seeing a need in my community for more available supports to women on the autism spectrum, I have begun working with another local woman towards structuring reoccurring group meetings. These meetings would be open to women teenage years through adulthood looking for disclosure and understanding not available within the general public or within mixed gender meetings. We have secured a location. We are currently looking for an agreeable time and framework. By reaching out to service providers within the community, a small population of potential participants with interest/need has been expressed.
I have communicated interest as a potential participant in ongoing autism spectrum research at the University of Pittsburgh. I have submitted the initially requested documentation. Also, my family and I have completed preliminary interviews. I am hoping I will be able to volunteer my time to this project, adding an underrepresented (adult) female component to autism research. My time at IMFAR definitely energized my perception of current research in this field.
Finally and most importantly, my acquired knowledge from attending IMFAR 2012 has given me added confidence while advocating for my daughter during the drafting and implementing of her first 504 plan. I was able to clearly express my concerns and actively aid in constructing necessary accommodations and additional instructions.
The opportunity the Autism Science Foundation provided to me with a travel grant to IMFAR 2012 has unending possibilities. It was a once in a life-time experience which I am so grateful to have witnessed.

Read Full Post »

Older Posts »

%d bloggers like this: