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Posts Tagged ‘Asperger’s Syndrome’

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.

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Travis Breeding - i want to be like youWritten by Travis Breeding

I want to be like you: Life with Asperger’s Syndrome is a book that I wrote to share my personal stories, struggles, and experiences with Asperger’s Syndrome. It is a biographical journey of my life from childhood into early adult life. I am very open and honest with my story in hopes of allowing the parent to better understand and relate to their child on the spectrum.

I want to be like you is written like more of a 300 page journal entry than anything else. It was my intent to allow the reader inside the head and mind of someone on the autism spectrum to help them understand how I think  and feel on a daily basis. It is my hope that by allowing the parent, educator, or professional access to this viewpoint, they can better understand autism spectrum disorders and use this knowledge to help others that they work with.

After going undiagnosed for many years and struggling with being  different. I want to be like you is my way of communicating with the world  the many thoughts and feelings I have had over my 25 year journey in this world.I hope that it shows that life may be difficult, confusing, or even a train wreck at times, but with hard work it can be overcome.

I want to be like you is my journey to self acceptance with having a diagnosis of Asperger’s Syndrome.

You can buy Travis’ new book “i want to be like you: Life With Asperger’s Syndrome” here.

You can visit Travis’ website here.

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President Barack Obama has announced his intent to nominate 8 new members to the National Council on Disability, including Ari Ne’eman, Founder and President of the Autistic Self Advocacy Network (ASAN).   In a press release, President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

Mr. Ne’eman is the first diagnosed Autistic presidential appointee, and, through the organization he founded, works to fight against aversives, restraint, and seclusion of individuals with autism.   Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services.  He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion.  Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award.

All of us at the Autism Science Foundation congratulate Ari on this important appointment.

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Autism and preschool: Include me!

I saw red flags for autism when my son was three and struggling with behavioral and social issues in preschool, so I made an appointment for him to be assessed by a developmental pediatrician. The wait was long, so in the meantime I arranged for an early education special education teacher to observe my son in his preschool classroom and come up with a plan to help his teachers understand his abilities and better manage his behaviors. None of this mattered, though. Days after the teachers were informed that my son had indeed received a formal diagnosis of autism, the school called to tell me my son was being expelled from preschool. It was a devastating experience.

A new guide called  Modifying the Preschool Classroom To Include Children with Autism: A Manual for General Education Preschool Teachers by Karen Griffin Roberts was created to help preschool teachers understand that it’s possible to include children with autism spectrum disorder in their classes. I talked with Ms. Roberts, a preschool teacher and mother of a son with Asperger’s Syndrome, about her guide.

Louise Bach Capps: You’ve put together a guide called Modifying the Preschool Classroom to Include Children with Autism: A Manual for General Education Preschool Teachers. As a long-time preschool teacher and a mother of a child with autism, you are uniquely qualified to write this manual. When did you first see the need for such a guide?

Karen Griffin Roberts: My son was diagnosed with ASD ten years ago, around the time Asperger’s Syndrome was first added to the DSM as part of the autism spectrum. Practically up until that time I shared the general public’s understanding that autism was only what you see in the movie Rain Man. I was determined to learn all that I could about autism to educate myself on the differences across the autism spectrum.

As my son got older and less dependent on me, I decided to go back to school for my education degree. That year, I was privileged to include a child with Asperger’s Syndrome into my general education preschool classroom. Since our family had already been introduced to ASDs, I had a bit of a “head start” as an educator. But many of my fellow teachers were concerned that I was setting a precedent they would not be able to follow. These teachers were running very individualized, developmentally-appropriate classrooms, but they were still afraid. I decided to write the manual so that teachers like my co-workers could better understand the range of abilities of those with autism spectrum disorder.

LBC: So the manual was a school project?

KGR: I am in the Masters of Early Childhood Special Education program now, but I wrote the manual while I was doing a Bachelors of Individualized Study called Early Childhood Development: A Study in Autism. For my thesis I chose to do a “creative project,” which resulted in the manual. While working on my BIS, I did a summer internship with the Kennedy Krieger Institute of Autism Studies in Baltimore, and was able to observe autism classrooms and attend professional development seminars on teaching young children with autism. I was aware that exemplary preschool programs do teach for the child, but I hoped if I put a manual together with a bit of guidance regarding the different learning styles of children with ASDs that it would help alleviate some of the anxiety the teachers were feeling, and possibly lead to more inclusionary experiences. In these past two years some of my co-workers have included children with autism in their classrooms very successfully, and are confident and happy to continue the trend.

LBC: IDEA doesn’t apply to private schools, and the majority of preschools are run by churches or are otherwise privately run. Why should a private preschool strive to include kids with ASD?

KGR: They don’t have to follow IDEA, but they should include all children. Inclusion is “best practice” in early childhood education, and any school promoting “quality education” should follow best practices. Preschool has become what kindergarten used to be. It should be a child’s first positive school experience. I believe my biggest responsibility as a preschool teacher is to prepare each child in my class for the social world. Unfortunately, there is no other time in a child’s school years when so much emphasis is given to the social world. So we need to help children develop that way of thinking before they move forward. Preschools should include kids with ASD because children need to understand that we are all different as much as we are the same, and that every person has something valuable to add to the classroom. Simply put, inclusion works, and it’s the right thing to do.

LBC: It’s not unusual for ASD kids to be kicked out of general education preschools, is it?

KGR: Most unfortunately, it is not at all uncommon. I feel strongly that this is a big hole in early education. Preschool teachers focus on social skills and a positive first school experience for each individual child. Since children with autism often present with deficits in social reciprocity, a preschool program is a very natural environment to learn those skills along with typically developing peers. When children are expelled from preschool, it’s nearly always for behavioral reasons. It’s hard for me not to jump right up on my soap box here! Children are born with different temperaments, and each individual person has an innate emotional makeup. One of the biggest lessons I believe young children need to learn is that it is OK to be angry, upset, to cry. I try to help them learn that it’s what we do with those feelings, how we handle them, that makes a difference. This is a difficult lesson for every child to learn, and it is especially difficult for children with autism. Many children with autism do not have the social skills to adapt naturally to different situations. They need to be taught, and the behaviors need to be modeled and reinforced constantly. That is not to say that children with autism should be singled out for these lessons. The entire classroom benefits from such direct instruction.

LBC: What about a preschool teacher who says, “It’s not fair to the other kids if I give so much of my time to the child with ASD?” I have heard this from one preschool and one museum-based summer program in regard to my own son.

KGR: I get frustrated when I think about this. Why do some educators not get it? Fair is not equal. In the manual, I write about the three rules I use in my classroom, the first rule being “Take care of yourself and your friends (we’re all your friends).” I spend the first month of the school year helping the children learn how important that rule is, and talking about friendships, families, and difference in people. These are the issues that help children nurture social and emotional competency, and develop a sense of belonging. Children are very accepting, I think it’s the adults who have anxiety in this area.

LBC: Some undiagnosed ASD kids, little twos and threes, are in general education preschools. If a preschool teacher has concerns about a student’s development, how should she address this to the parents?

KGR: This is always difficult. Before families enroll in a preschool, they should be sure the teachers have some sort of developmental progress assessment program. A good program will begin informal assessments–observations, some notes–as soon as the school year begins, to create a baseline for particular abilities. The National Association for the Education of Young Children provides a list of developmental milestones children should meet at a particular age. I trust the family’s knowledge of their child much more than my own, so I first discuss any observations with them. If it’s something we both agree merits further observation, we continue to observe, and if we don’t see improvement, I ask them if they would like to contact Child Find for an assessment. While this is very difficult for some families, for others it is a relief.

LBC: I’ve read your manual online, but do you have plans for it to be published? I’d love to see it in a booklet that could be distributed to preschools everywhere.

KGR: I sent it out to publishers and had an offer to revise and expand it into a college textbook. But I’m afraid those changes would be inappropriate for the audience for whom I wrote the manual. Honestly, while I understood the demand here locally when I wrote it originally, I did not expect the reactions I’ve gotten from school districts, families, and teachers. I’m a bit overwhelmed!

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