This was essentially the state of our understanding of autism in 1972—when I first met children with autism. Freeman at the University of California, Los Angeles (UCLA), to conduct a population-wide survey of all multiplex families (families with more than one child with autism) in the state of Utah, I had to ski Alta and Park City and visit the families. with three, four and five children with autism. Shortly after the "brother" project was completed, I published The World of the Autistic Child: Understanding and Treating Autism Spectrum Disorders.8 It was the first book that I know of that used the term spectrum in the title in addition to autism.
The world of an autistic child describes how autism can change how a child with autism makes sense of things in their world. Along the way, growing awareness of autism in the legal field has drawn me into what I call the “vaccine wars,” which I discuss in Chapter 8. Currently, there is not much in the way of continuity of care for families. living with autism.
Most research dollars go to study the brains and genes of children with autism and their families. Parents need to be coached and supported as they learn to parent a child with autism.
TRAIN PARENTS TO BE ACTIVE AGENTS OF THEIR CHILD’S HABILITATION
For a trained, informed parent, the development of his or her child is no longer a matter of rolling the dice, but something over which the parent has as much control as possible. The foundation consists of the parents of children with autism and ensures that, from the day their child is diagnosed, there is strong educational support to help them understand the disorder, what can be done about it and what their own role is in their child's rehabilitation. could be. This essential ingredient, which teaches the parent how to be an integral part of his or her child's ability to progress (and needs it), has been largely lost in homeschooling today, as well as in special education. education.
Preparing parents to be an integral part of their child's learning, in the style of ABA programs of the late 1980s. The child's parent is not uniquely qualified to be his or her principal or secretary; rather, parents are uniquely qualified to know the most about what their child can and cannot do and what motivates the child. The family, represented by the child's father, who was a lawyer, argued that asking his wife to work in the program was tantamount to slave labor.
The result of such a relationship can be a parent learning more about teaching children with autism, learning skills they can take home to continue teaching their own child, and perhaps even a new appreciation for their child's teacher as a trained professional. In the early years, parenting is the foundation for understanding autism; well established, it can continue to guide parents as decision makers for their children.
REVISE THE FAMILY MEDICAL LEAVE ACT FOR FAMILIES LIVING WITH AUTISM
When parents learn to use therapeutic techniques—and see them make their lives easier—the most challenging times at home can become teachable moments. After being asked "What kind of work do you do?" The next question is invariably "Do you really think there is more autism than there used to be?" This question can be answered as "Yes", "Maybe" or even "No". Where you stand on whether there is more autism these days depends on where your interests lie, your "reading" of the data, and what data you read. Early age of first diagnosis, no rediagnosis after the child developed language, limited ability or opportunity for the parent and clinician to communicate clearly, and a parent's understanding that autism offers more help made "autism" the problem this mother had come to focus on.
In reality, diagnostic assessment rarely works like this: Each of these blind men—the psychiatrist, the psychologist, the teacher, the speech-language pathologist, the occupational therapist, the teacher—are busy people. One of my mentors, Professor Edward Ritvo of the University of California at Los Angeles (UCLA), a very wise child psychiatrist, taught me that in a very young child "the brain only has a few ways to 'ouch.' say." took me a while, but I realized he was absolutely right: The repertoire of a toddler's behavior is much less differentiated than that of an older child - and the first signs of what may develop later look much more similar in a 2- or 3-year-old than in an older child. The educational definitions of "autism" found from state to state are very often broader compared to the DSM: Some do not even use the term autism per se, but rather "autistic-like" or "autistic-like learner (AUT)." The US Department of Education guidelines finally provide a very well-tailored way to access autism-specific special services for those who learn differently (and need to be taught differently) because of signs of autism.
We don't see that in a child with autism." The parent counters, worried about observations you may have missed: "What about the fact that he lines up his Thomas the Tank Engine toys on the track -. Autism, like all the conditions described in the American Psychiatric Association's "bible" ( APA), the Diagnostic and Statistical Manual (DSM) describes the difficulties of some people who would be called autistic or described as being on the autism spectrum. A December 2015 New York Times article documented that children under the age of 2 were given antipsychotic drugs .3 The brain is developing rapidly and there are simply no safety or efficacy studies (and no medical ethics board would approve their studies) in these young children.
Medicalizing psychiatry and then labeling very young children with psychiatric disorders provides the opportunity to medically treat a very young child who may have a psychogenic (or 'behavioral', the now preferred term) antecedent – which is effectively ( behavioral) can be treated. without brain-altering chemicals. Asperger's disorder was what all the excitement about “the autism” in DSM-IV-TR was about. An early example of this is secretin (a pancreatic stimulant) which caused a major stir in the world of autism treatment in the mid-1990s. Secretin will also be repeated in Chapter 7.) The first thing that happens when news of new agents (such as secretin) hits the autism 'grapevine' is an attempt, even by people without a confirmed diagnosis of autism, even with just one few symptoms, to go into the queue for treatment trials.
I answer: “Of course you can!” The parents then ask: “Is it advisable for my child?” The answer is of course “no” if parents have a child who does not have the DSM diagnosis of autism. If you are a nerd who (a) focuses very hard on writing efficient computer code, (b) can earn a low six-figure salary, (c) drives a BMW, (d) has an administrative assistant who organizes your work life, and (e) having a spouse who organizes your family life, where is the adaptive dysfunction. For Americans and other Westerners, I have sometimes thought that an idealized version of autism would tickle a nerve first touched by Jean-Jacques Rousseau, the 18th century philosopher who wrote of the "noble savage," the native of the true state of human nature.
It is no longer about "the best interest of the child". Parents are often supported to focus on their child's civil right to be educated in the same classroom as non-disabled peers. Here's the irony: We no longer negligently deny special needs children a special education, as was all too common before Public Law (PL) 94-142, which was the first federal law guaranteeing universal special education, in 1975 On the internet I have read that it is misunderstood as being "for" the school rather than the child.
Parents can be unwitting enablers—the way a codependent spouse of an alcoholic makes excuses for the spouse's bad behavior and unemployment.
