I think kids (with and without autism) are better at their lives when they get to do stuff that makes them happy.
Many children (people) have to spend a large portion of their day practicing things they are bad at. This is especially true for a lot of kid with autism, who often have to attend a myriad of deficit-based therapies, in addition to going to school (which is usually inherently social).
I am actually really impressed with how well kids with autism manage to cope, considering how much of this negativity and criticism they put up with every day. Shoot, if someone even tells me two criticisms in a row about myself I feel like crying
In fact, on days that are packed full of stuff I don’t feel like doing, I’m a whole lot worse at my life. I’m more likely to be late, to be snappy or slow-witted, and I don’t have any innovative ideas. However, let me have a day where I get to go for a walk, laugh with somebody, hang out with some kids and watch/play sports–or even any ONE of those things, I’m so much happier and I get so much more done. I resent the hard parts less when I get to do stuff I’m good at too.
I don’t think I’m alone in this. I think kids (with and without autism) are better at their lives when they get to do stuff that makes them happy.
For more on increasing happiness etc, check out this great book by June Groden.
By Marlene Cohen and Donna Sloan
Buy this book from Amazon
Marlene Cohen and Donna Sloan, both board certified behavior analysts, wrote Visual Supports for People with Autism as a practical guide for parents and teachers. This book is so refreshing to me because the authors are incredibly positive about using visual systems to support learning for people with autism. They offer truly constructive ideas, and their book is extremely well-organized.
In the introduction, Sloan and Cohen point out that some people on the autism spectrum have trouble processing auditory input, and that visual information is absorbed more easily. They offer several simple methods for assessing a child’s auditory processing skills, including observing the child’s reaction to information presented visually alone, and verbally alone. They also recommend asking other people if they think a child responds better to auditory or visual information. The authors state that visuals are not always necessary for teaching everything, nor does everyone need the same visuals. Instead, they recommend using visuals for concepts that are confusing, or processes in which a person is dependent on someone else’s prompts.
Sloan and Cohen remark that it is not just people with autism who use visuals to help them understand what is expected of them. Most people use calendars, planners, highlighters, and post-its. Often, when people make presentations, they judge their audience and make carefully selected graphs and charts to explain concepts to that particular audience. Just as we do for neurotypical people, Sloan and Cohen explain, we should tailor visual supports for individuals with autism, instead of using the same ones for everyone.
When describing the features of a good visual support, Sloan and Cohen remind readers to consider the size, clarity, durability, and portability of a visual system. They also request that readers try their best to make age appropriate visuals, which will not undermine their users credibility is social situations. Sloan and Cohen seem to believe in taking data about the effectiveness of visual systems, and present several graphs as examples for data taking. They point out that there are many ways to take and record data, and that not taking any data opens us to the risk of continuing a system that is not working, or even causing additional confusion.
The bulk of the text is made up of examples of different types of visual systems; including schedules, comic strip conversations, graphic organizers, and power cards. The authors show how each can be used to address a need, like language development, and then move on to show how each can be used to help in another category, such as increased memory. For example, a power card is used as a short, portable visual reminder that a person can carry in their pocket. For language development, a power card might have a picture of favorite character saying, “Spiderman talks about other people’s interests by asking questions like, ‘Do you have any pets?” When used to increase memory, the power card might read, “Listen to the answer to your question, then comment.”
Sloan and Cohen’s book is a compilation of many others people’s work. The visual systems they describe have been invented by other people, and the authors are diligent about giving credit to original inventor. They are also conscientious about reminding their readers to try to fade out visual systems if they are not necessary anymore, a step that many autism professionals forget to do. Sloan and Cohen’s book is not biased toward any one modality. In fact, it is carefully neutral, which makes it accessible for people from any autism therapy background.
APA citation: Cohen, M. J., & Sloan, D. L. (2007). Visual supports for people with autism: A guide for parents and professionals. Topics in autism. Bethesda, MD: Woodbine House.
Changing the Course of Autism
by Bryon Jepson
Bryon Jepson’s book, Changing the Course of Autism, is intended for parents and physicians of people with an Autism Spectrum Disorder (ASD), including autism, Aspergers, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rhett’s Disease, and Child Disintegrative Disorder. The title infers Jepson’s intent, which is also restated in the introduction; he wants parents and mainstream physicians to view ASD as a medical illness, and not simply a behavior disorder. Being a self proclaimed ‘mainstream physician’ himself, Jepson admits to a deep initial skepticism regarding the biomedical treatment of autism. In the preface, he illustrates his eventual acceptance of autism’s complex framework through his second child’s ASD diagnosis, and his wife’s subsequent investigation. After doing an enormous amount of his own research and literature review, Jepson now views autism as a combination of genetic predisposition, and environmental toxin exposure, that result in a muddled metabolic process, which affects multiple organs.
Jepson seems to understand that his book will need to withstand intense criticism. While many people, including doctors, are becoming accustomed to treating autism with dietary changes, many more people are not comfortable with the other assertions Jepson makes throughout the text. Perhaps in premeditated response to this doubtful reception, Jepson has loaded his book with medical studies, including up to 100 sources per chapter. In an attempt at transparency, Jepson also discloses when he is speculating, and when his research is incomplete. Doing his best to explain complicated biological processes before dissecting the relevant studies, Jepson tries to make good on his goal of including parents as well as physicians in his target audience, but much of this background seems fairly in depth for the average parent.
After establishing the generally-accepted-but-not-entirely-verified genetic component of autism by citing twin studies, Jepson takes the genetic factor a step further. He points to a significantly higher rate of other immune system abnormalities in people and families with autism. After connecting these immune-system imbalances with many of the DSM-IV characteristics of autism, Jepson challenges the medical community to take the list of behaviors in the DSM-IV and list them as symptoms of a more complex disease in medical textbooks.
As if this challenge was not enough, Jepson also revisits the issue of immunizations, mercury, Thiomersal, and autism. In reviewing several pivotal studies which refute the link between autism and immunizations, Jepson references faulty methodologies, fuzzy or even distorted statistics, and a damning conflict of interest as grounds to re-examine the topic. After drawing parallels between the symptoms of too much mercury, and the symptoms of autism, Jepson cites several small immunization studies with radically different conclusions as further support of his cause.
Towards the end of the text, Jepson describes some specific interventions to aid the digestive, and autoimmune health of people on the autism spectrum. While detailing various vitamin and mineral regimes, Jepson reminds the reader that his book is not intended to be a step-by-step guide to fixing a person with autism. Jepson also encourages parents to be their unique child’s advocate, and beseeches physicians to be open-minded about viewing autism in multiple lights.
APA citation: Jepson, B. (2007). Changing the course of autism: A scientific approach for parents and physicians. Boulder, CO: Sentient Publications.
Autism’s False Profits, by Paul Offit
Paul Offit had a bird’s eye view on the autism, vaccines, and thimerosol, controversy. In fact, he made some key decisions during the whole debacle, and some folks deeply resent him for those decisions. In his book, Autism’s false prophets: Bad science, risky medicine, and the search for a cure, Offit describes the people and circumstances that lead up to the current debate over whether or not thimerosol, a mercury derivative, is responsible for ‘causing autism’. According to Offit, who founded the vaccine education center at the Children’s Hospital of Philadelphia, and helped to invent a rotavirus vaccine, there is no scientific debate. He cites 13 epidemiological studies debunking the correlation between autism and the MMR vaccine, and 6 epidemiological studies debunking the correlation between autism and thimerosol. Offit also cites studies claiming that the rate of autism is the same in vaccinated and unvaccinated children.
Although some might think that if the scientific community discredits the vaccine-autism connection, the media and the public should follow suit, Offit knows better. Throughout his book, Offit brings the reader’s attention to the method by which general public receives their scientific information: the media. The media and reliable scientific studies do not do business in the same way, Offit claims. Even fairly dependable media sources do not prioritize the same statistical standards as the scientific community, and neither group explains those standards to the public. Additionally, says Offit, this is the same public in which a full 50% believe in astrology, ghosts, aliens currently on earth, and dinosaurs and humans living in the same time period. This group is easy to scare, and difficult to un-scare, claims Offit, but he is not unsympathetic to parents who are desperate to find a distinct cause for autism. Over and over again, Offit points to a study by Dr. Adrian Sandler in which a half a group of children with autism receive secretin injections (an autism treatment trend in the early 2000’s), and half receive a benign saline injection. According to parent testimony (neither group knew which treatment they were receiving), the children receiving the secretin made improvements, but those who got the saline injection improved even more. This, says Offit and Sandler, is testament to the overwhelming parental need to see progress, to have hope for a cure.
Offit carefully details the way this desperate hope has been manipulated since autism was discovered by Leo Kanner in the mid 1900’s. The ‘false prophets’ Offit denounces include Bruno Bettleheim (refrigerator mothers), Matthew Israel (electric shock therapy), Douglas Biklen (facilitated communication), Victoria Beck (Secretin), Richard Deth (vitamin B12), and Andrew Wakefield and Defeat Autism Now (mercury chelation). According to Offit, each of these hysterical fads were based on sloppy, flawed research. The media, seeing itself as ‘defenders of the weak’, flashed newsbreaks about these treatments, and several politicians, not understanding the science themselves, got roped into promoting various dubious treatments. Many confused parents, already inundated with internet-cures and anecdotal stories, leapt to experiment with a huge variety of treatments, only to find their hopes dashed over and over again. Offit seems saddened and disgusted by these under-researched treatments, and slightly fed up with parents who turn an overly-critical eye on meticulously researched government-sanctioned vaccine programs, but do not keep this same critical outlook when evaluating treatments for their children. Although Offit receives hate mail and death threats from people who, despite all the evidence, still believe vaccines cause autism, he is committed to telling his version of the convoluted autism story.
APA citation: Offit, P. A. (2008). Autism’s false prophets: Bad science, risky medicine, and the search for a cure. New York: Columbia University Press.