Sunday, January 29, 2012

Craig Kendall

Craig Kendall is a prolific author of books and guides on learning disabilities including several books on autism, Asperger's Syndrome and Down Syndrome. He is the father of an child with disabilities and has spent nearly a dozen years researching the causes, symptoms, and treatments for autism, Asperger's Syndrome, Down Syndrome and several other issues.

He has conducted extensive research with parents as well as professionals. He publications include: "The Asperger's Syndrome Survival Guide" "Asperger's Syndrome Guide for Teens and Young Adults" "Thriving in Adulthood with Asperger's Syndrome" "The Autism Survival Guide" "New Hope for Autism" "How to Live, Love and Succeed with Down Syndrome"

Craig can be directly emailed at: Craig.Kendall@AspergersSociety.org

           

Sunday, January 22, 2012

Asperger Syndrome in the Family

Redefining Normal 

 Liane Holliday Willey and one of her daughters both have Asperger Syndrome. In * Asperger Syndrome in the Familyshe looks, with honesty, wisdom and humor, at the implications this has for her family, both the Aspie and the non-Aspie members.

Through personal vignettes, frank discussions and practical suggestions for dealing with everything from major to minor Aspie challenges, Liane, her husband and their three daughters bravely open their home to their readers, inviting them to look behind the curtains at their version of Aspie life. 

Not only does the book underscore the importance of mutual support and respect in an Aspie family - in fact in any family - it offers practical help for families in similar situations. 

This is a rich and positive book that will speak to all those whose lives have been affected by Asperger Syndrome.

                     

Friday, January 20, 2012

New Definition of Autism Will Exclude Many, Study Suggests

By BENEDICT CAREY
Published: January 19, 2012
The New York Times

Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.

James C. McPartland, an assistant professor in the Child Study Center at Yale University, is answering your questions about this possible new definition of autism.

The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. The D.S.M., as the manual is known, is the standard reference for mental disorders, driving research, treatment and insurance decisions. Most experts expect that the new manual will narrow the criteria for autism; the question is how sharply.

The results of the new analysis are preliminary, but they offer the most drastic estimate of how tightening the criteria for autism could affect the rate of diagnosis. For years, many experts have privately contended that the vagueness of the current criteria for autism and related disorders like Asperger syndrome was contributing to the increase in the rate of diagnoses — which has ballooned to one child in 100, according to some estimates.

The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.

The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously. “She’s on disability, which is partly based on the Asperger’s; and I’m hoping to get her into supportive housing, which also depends on her diagnosis.”

The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

Experts working for the Psychiatric Association on the manual’s new definition — a group from which Dr. Volkmar resigned early on — strongly disagree about the proposed changes’ impact. “I don’t know how they’re getting those numbers,” Catherine Lord, a member of the task force working on the diagnosis, said about Dr. Volkmar’s report.

Previous projections have concluded that far fewer people would be excluded under the change, said Dr. Lord, director of the Institute for Brain Development, a joint project of NewYork-Presbyterian Hospital, Weill Medical College of Cornell University, Columbia University Medical Center and the New York Center for Autism.

Disagreement about the effect of the new definition will almost certainly increase scrutiny of the finer points of the psychiatric association’s changes to the manual. The revisions are about 90 percent complete and will be final by December, according to Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions.

At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual. Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu.

Dr. Kupfer said the changes were an attempt to clarify these variations and put them under one name. Some advocates have been concerned about the proposed changes.

“Our fear is that we are going to take a big step backward,” said Lori Shery, president of the Asperger Syndrome Education Network. “If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

Mark Roithmayr, president of the advocacy organization Autism Speaks, said that the proposed diagnosis should bring needed clarity but that the effect it would have on services was not yet clear. “We need to carefully monitor the impact of these diagnostic changes on access to services and ensure that no one is being denied the services they need,” Mr. Roithmayr said by e-mail. “Some treatments and services are driven solely by a person’s diagnosis, while other services may depend on other criteria such as age, I.Q. level or medical history.”

In the new analysis, Dr. Volkmar, along with Brian Reichow and James McPartland, both at Yale, used data from a large 1993 study that served as the basis for the current criteria. They focused on 372 children and adults who were among the highest functioning and found that overall, only 45 percent of them would qualify for the proposed autism spectrum diagnosis now under review.

The focus on a high-functioning group may have slightly exaggerated that percentage, the authors acknowledge. The likelihood of being left out under the new definition depended on the original diagnosis: about a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.

Dr. Volkmar presented the preliminary findings on Thursday. The researchers will publish a broader analysis, based on a larger and more representative sample of 1,000 cases, later this year. Dr. Volkmar said that although the proposed diagnosis would be for disorders on a spectrum and implies a broader net, it focuses tightly on “classically autistic” children on the more severe end of the scale. “The major impact here is on the more cognitively able,” he said.

Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.

Dr. Volkmar acknowledged as much but said that problems transferring the data could not account for the large differences in rates.





Sunday, January 15, 2012

Anger and Agression; 7 tips

Anger is a temporary feeling caused by frustration, while aggression is an act often meant to hurt someone or destroy something that someone owns. Anger is okay, but aggression is not.

The following tips can help in parenting your autistic child when they become aggressive.
  1. Positive Reinforcement: Catch the child being good. Make sure to reward and acknowledge whenever you see your child with autism doing a behavior that you like. We often forget to notice or appreciate it when things are running smoothly; the trick is to notice when things are going right, and verbally acknowledge what your autistic child is doing right so he will be more motivated to repeat these behaviors in the future. Positive reinforcement is a powerful factor and a key to parenting autism successfully.
  2. Ignore Bad Behavior Aimed at Getting Attention: Those who have mastered parenting an autistic child realize the importance of ignoring bad behavior, when possible. That is, if the child with autism is acting out to get attention, don't give him the attention. If he is doing something to deliberately provoke you, don't let him have the satisfaction. Those who have been successful at parenting an autistic child say that this is one of the most important lessons to learn.
  3. Provide Outlets for Physical Activity: Any child, but especially a child with autism, needs to have opportunities to run around and let off steam, to have some kind of movement or play, both at home and at school. Due to sensory issues, many autistic kids get overwhelmed resulting in frustration. Physical activity can allow your child with autism to "let off steam" and calm down.
  4. Avoid Troubling Situations: Don't put kids with autism in situations that seem like they will lead to troublesome behaviors. For example, intensely competitive activities for a child that is too aggressive and doesn't respond to competition well; or any activities where the child might be judged harshly for a child who does not respond well to criticism.
  5. Human Contact: Closeness and touching can often curb angry impulses in some kids with autism. We all crave human contact to different degrees, and young autistic children especially crave adult attention from their parents in their activities.
  6. Show Interest: If you show interest in what your autistic child is doing, his focus will be on that, and not as much on what he is feeling inside. He will be calmed by the interest you express in him. This is very important in parenting an autistic child. Children with autism need to know and feel they are important to, and have a connection with, parents and other adults. Be explicit in how you show and express your interest. Subtleties often are lost on a child with autism.
  7. Sometimes All We Need Is A Hug! This is an easy and simple thing to remember; showing affection to a kid with autism when he is angry can loosen him up and relax him. Give him a hug, a shoulder rub, or a big smile. This may not work as well for kids with more serious emotional issues who have trouble accepting affection.
Parents of autistic children as well as professionals tasked with teaching children with autism often struggle with how to discipline a child with autism. But mastering these principles are important to parenting autism successfully.

         




Sunday, January 8, 2012

Autism and Medical Check-ups

Author: Jeremy Robb
Published: December 06, 2011 at 7:52 pm

Family can help calm a child with Autism. So often we may find ourselves focused so much on one particular disorder or illness, and forget that people can still get common colds and cavities. And that's the same for my son. I often find myself so caught up on trying to teach him behaviors, focus on speaking and spelling (he's becoming a wizz on the iPod Touch virtual keyboard), that I forget that he has other needs too. And, unfortunately for him, he inherited my baby teeth and now has at least one massive cavity.

Because my son has Autism and is non-verbal, he can't tell us that his jaw hurts when he tries to eat. So we need to rely on body language to help guide us. It's not easy, because any behavior caused by continuous pain could also be caused by his need for constant deep pressure. It's difficult to tell what the problem is, and how to best address it. It wasn't until I started looking into his mouth that I noticed a large cavity forming.

Now knowing that my son has a cavity, a new anxiety can take hold: the dentist. People generally don't like going to the dentist, and people with Autism like it even less. There is the lighting necessary to see within the mouth, and those who are light sensitive can have problems with that. There is the physical sensation of someone placing their fingers and objects within their mouths, and those with sensory issues may not like that. And then there is the need to sit back in a chair for long periods of time, or sit in a waiting room for long periods of time, and that's just not fun at all. So a visit to the dentist is something I have been dreading.

Luckily, within our area there is a dentist that specializes in treating children with Autism. They are sensitive to their special needs, and can cater to them accordingly. I'm not sure how, though our first appointment is this week so I will find out soon enough. It was a relief to my mind to even find a dentist willing to make the effort to work with a child with such sensory needs.

But what about other check-ups? The dentist isn't the only place where children with Autism can have a hard time. What about the doctor's office? You have the same problem: long waits in the waiting room, and then again in the exam room. Then getting poked and prodded by the doctor, injections by the medical assistants (when necessary), and bright lights getting shined in places where bright lights generally don't go (ears, eyes, and mouth among others). It's a sensory nightmare, and getting an impatient pediatrician can make it all the more frustrating.

Again, luckily for us we have a pediatrician that understands our child's needs, and can cater to them. Part of it is because he delivered our son, and part of it is because he works with my wife. But also, he is a very patient man who is willing to make the effort to make sure our son is comfortable.

But that doesn't mean every visit has been event-free. One time we took our son into the Urgent Care for a quick check-up, and he was not handling the experience very well. He didn't feel well, and wanted to run around and get his energy out. Another person, someone bringing in their grandchild for something, became disgusted with my son's seemingly undisiplined behavior. She voiced as much, under her breath, perhaps in hopes what we wouldn't hear, or perhaps wanting us to hear. I, of course, heard, and just when I was about to explain to her our situation, we were called in. So, unfortunately, I was unable to educate this person to the trials of visiting such a structured environment with a child on the Spectrum, and what kind of effect it has on his behavior.

So what is it about the office that makes it so difficult for a child with Autism? Well, children with Autism generally (not always) have more neurons in their brain than most neurotypical children. These neurons remain active, and often do not prune at age 2 like most neurotypical children. As such, when they get a sensory message along those neurons, all those extra neurons fire at once. Imagine, for a second, someone turned on a strobe light in the room you are in, turned up the stereo and television to a very loud setting, and ran them both at the same time. Then add some sandpaper for the walls, gravel floors and seats, and painted everything in bright, swirling colors (imagine the 60's, but brighter). The strobe lighting represents the minute flickering of the florecent lights. The stereo and television reflect a sensitivity to hearing, and hearing multiple conversations at once. The sandpaper walls, gravel floors and such represent the sensitivity to touch. What is perfectly normal to a neurotypical child is amplified x number of times over for a child with Autism. And add to that a long, unpredictible wait (healthcare professionals can and often do get behind in their schedules), and it becomes almost intolerable.

So what can you as a parent do to help relieve the situation for your child? Well, often times finding a provider who is aware of your child's condition can be the best step. They will do their best to schedule you when it's most convenient, and results in the shortest wait time. Next, if your child has a sensitivity to light, often sunglasses or dimming the room's lighting can relieve the tension. If sound is a problem, giving them something to focus on, such as music with headphones, can help calm them down significantly. Some children need something to chew on (gum, a hose, plastic toys, something), while others just need someone to give them bear hugs (deep pressure on the skin and muscles). It may be any one of these, or a combination, which is why as a parent we are the best judges as to what works and doesn't work for our children. That being said, if you work with occupational therapists, they may have ideas you can try.

So if you perhaps see a parent with a child that seems to be behaving with no regard to that parent, it's quite possible that child has Autism. Offer to help if they are obviously in stress, otherwise just a smile and a nod to let them know you understand works wonders. Parents are often more comforted by the nod than by anything else that you can do.

Sunday, January 1, 2012

Personal Hygiene?

What's That Got To Do With Me..?

This book is a curriculum developed for students with autism, Asperger's Syndrome, learning and developmental disabilities, designed to help them understand how others perceive their appearance and the social implications of neglecting personal hygiene.

Simple factual information is accompanied by humorous cartoons that emphasize how others view someone with poor hygiene and explain exactly what the student needs to do to ensure good hygiene. Quizzes and activity pages provide numerous opportunities for repetition and reinforcement of the key points.

There are also hands-on activities to demonstrate why and how to perform various hygiene tasks. Several social stories are also provided, along with a set of worksheets that help students set up a daily schedule to allow time for completing necessary hygiene tasks.

Pat Crissey has been a special education teacher and autism consultant for over twenty years. She has written numerous special education books and teaching materials, which evolved from her hands-on experience working with kids and adults with special needs. Pat lives in Oregon with her husband and has three grown children and two young granddaughters.