Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

Sunday, August 3, 2014

Plain Talk About PDD and the Diagnosis of Autism

“Your child doesn’t have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn’t have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have.” ~ Bernard Rimland, Ph.D. Autism Research Institute

For sure you want to know if it is or isn’t autism so you can secure appropriate therapies and placement. The diagnosis of autism (which is what is assumed today if a child has a diagnosis of PDD or PDD NOS) will most likely lead to therapies and placement that are appropriate for autism.

There are other diagnosis that may be more appropriate for the child to secure appropriate therapy and placement for the best prognosis. For example, due to apraxia or dyspraxia also being multifaceted communication impairments, most apraxic/dyspraxic children could fall into the PDD or PDD NOS diagnosis depending upon where they are diagnosed. When this happens however instead of a focus on speech and motor planning therapies, along with if needed sensory and strengthening therapies, all of which could be appropriate for an individual with apraxia or dyspraxia, the focus would most likely be more on behavioral therapies such as ABA. However ABA therapy which is typically appropriate for autism, is highly inappropriate and can even be detrimental if used to address the motor planning deficits of an apraxic or dyspraxic child.

For this reason, please don’t accept PDD or PDD NOS unless you are sure it’s autism, and if your child has mild autism, just say it’s mild autism. So I agree 100% with Dr. Rimland. Here’s one of my favorite articles on this by him: Bernard Rimland, Ph.D.

Plain Talk about PDD and the Diagnosis of Autism

Plain Talk about PDD and the Diagnosis of Autism
Written by Bernard Rimland, Ph.D. Autism Research Institute
Autism Research Review International, 1993, Vol. 7, No. 2,

Let’s start with the obvious: the label PDD (Pervasive Developmental Disorder) is a poorly understood, uninformative, confusing, disliked, and should be abandoned. The sooner the better. In fact, it should never have been adopted in the first place.

Over the years I have talked and corresponded with thousands of parents who have told me their child “has PDD.” I often respond by saying something like, “Your child doesn’t have PDD. There is no such thing as PDD. Your child may be autistic, or have a condition like autism, or many characteristics of autism, but he doesn’t have PDD because there is no such thing. PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have.”

If any parents have been distressed by this blunt, unexpected harangue on my part, I would be surprised. The vast majority seem relieved to at last hearsomeone giving them straight talk about PDD. Parents live with their child 24 hours a day, 7 days a week. These parents realize that their handicapped child will in all likelihood be the central focus of their lives for the rest of their lives. They want to know the truth, insofar as the truth is known. They don’t want to be misled or misinformed by sugar-coated verbiage masquerading as informed fact. If we don’t know the right label for their child, let’s tell them that up front, rather than hide our ignorance behind the mystique of a pseudo-scientific label, presuming knowledge we don’t have, like PDD.

I am very much aware that creating suitable names for “psychiatric” or “behavioral” disorders is a difficult and thankless task. Look at what we have now: Schizophrenia is Greek for “split mind.” Mental retardation is a euphemism for low intelligence. Hyperactivity merely describes what everyone knows too well–the person is too active. Autistic means “day dreaming.”

Until we know what causes these things we are stuck with using a somewhat descriptive term to characterize them. I’ll agree to that, as a matter of necessity, but where does PDD come in?

The passage of time has led to widespread usage of the terms, schizophrenia, mental retardation and autism. There is little or no likelihood that PDD will be afforded similar acceptance.

In the Autism Research Review International (ARRI) (1991, Vol. 5, No. 2), we summarized an excellent statement, signed by 16 prominent European and U.S. professionals in the field of autism, titled “Autism is not necessarily a pervasive developmental disorder.” The authors noted that although the term PDD was introduced well over a decade ago, it has not really caught on, and is unfamiliar not only to lay people, but to the politicians and administrators, most of whom–thanks probably to Rain Man–are aware of autism. The article observes that the term “pervasive” is particularly inappropriate, since severely retarded persons, many of whom have chromosomal defects which affect every cell in their bodies. Autism, they point out, rather than being a pervasive disorder, is in fact a specific one, characterized by deficits in social and cognitive functioning.

Quite apart from the misleading and inappropriate semantics of the term PDD is a practical matter: autistic children and adults unfortunate enough to have the PDD affixed to them have often been–and continue to be–excluded from programs and services designated for those with autism, and which would benefit them.

Clearly, the PDD designation, along with its cumbersome bureaucratic baggage (i.e., PDD-NOS: “Not Otherwise Specified”) should be relegated to the Archives of Failed Attempts, where it will have plenty of company, while we go on about our business.

There are many more children with autistic-like disorders than there are children with autism itself. When I founded the Autism Society of America in 1965, I urged, and my recommendation was followed for many years, that all ASA stationery, brochures, and other printed materials carry the wording “Dedicated to the welfare of all children (later ‘children and adults’) with severe disorders of communication and behavior.” The need for an encompassing title for this group was evident even then.

Of the various labels that have been suggested, the one I like best is “autistic spectrum disorder,” which, I believe, was first suggested by Wing and Gould in 1979. The advantages of this term are obvious. For one, it acknowledges that there is a range of problems and of subtypes, and it does not pretentiously claim to be based on knowledge that is not yet available to us.

At the Autism Research Institute we have been working for over a quarter of a century on the development of more objective scientific means of diagnosing children with autism and related disorders.When my book Infantile Autism was published in 1964, it contained, as an appendix, a checklist designated “Form E-1″ (E for experimental). Within a year E-1 was replaced by the Form E-2. As of June 1993, the Autism Research Institute has collected over 16,800 E-2 forms, completed by parents of autistic and possibly-autistic children in over 50 countries. (Form E-2 is available in eight languages.)Form E-2 is designed for completion by the child’s parents, and asks questions about the child’s early development and about language and behavior through age five an a half. (After age five an a half, autistic children begin to change in many ways, so it is better to rely on behavior prior to that age.) Once we receive a completed E-2 form from a parent or professional, we enter the data into our computer, derive a score which tells the child’s position to the continuum ranging from “classical autistic” at one end to “not autistic” on the other, and mail a report to the sender. We have performed this service, free of charge, for well over a quarter of a century for thousands of parents and professionals world-wide. (Readers of the ARRI are invited to request E-2 forms and avail themselves of this free service.)

A major purpose of this effort is to collect data for statistical analysis. There is no doubt that the “spectrum of autistic disorders” contains numerous subtypes, some of which are large enough to be identified by as our database of almost 17,000 E-2 Forms. We are already aware of some of these types, such as classical–Kanner’s Syndrome–autism, fragile X autism, Rett syndrome, and candida-caused autism. My colleague, Dr. Stephen Edelson and I are conducting factor analyses and cluster analyses of the E-2 database, in order to identify and characterize these and other subtypes. The database is large enough so that subtypes identified by cluster analysis within one segment of the database can be confirmed by cross-validation on E-2 data which was not used in the original identification of subtypes.

As this work advances we will report on progress in the ARRI, and in other places. Subtypes identified through this means of statistical analysis can be validated in a number of ways, independent of the E-2 database, including family history variables, clinical laboratory tests, and differential responses to drugs and other treatments. It is thus hoped to place the diagnosis–as well as the treatment–of “autistic” children and adults on a more scientific basis. I believe that progress in this field will proceed faster if we rely on the identification of subgroups through the analysis of statistical data, rather than on constructs based on speculation, conjecture, surmise and subjective impressions.
In the meantime, let’s get rid of “PDD!”

This article appeared in the Autism Research Review International, Vol. 7 (2), 1993. The Autism Research Review International is a quarterly newsletter published by the Autism Research Institute (4182 Adams Avenue, San Diego, CA 92116, U.S.A.).

Monday, July 21, 2014

Delayed Auditory Processing | The Autism Site Blog

Delayed Auditory Processing | The Autism Site Blog

Feds Clarify Obligations To Kids With Autism - Disability Scoop

Feds Clarify Obligations To Kids With Autism - Disability Scoop

In what advocates are calling a major win, federal officials are for the first time telling states that Medicaid coverage must include treatments like applied behavior analysis for children with autism.
Medicaid programs nationwide must offer “medically necessary diagnostic and treatment services” to kids with autism, the Centers for Medicare and Medicaid Services told states in abulletin this month. That includes everything from speech and occupational therapy to personal care services and medical equipment, the agency said.
The services must be included in what’s known as the Early and Periodic Screening, Diagnosis and Treatment program, or EPSDT, a package of offerings that every state is required to provide children under age 21 who qualify for Medicaid.
The move comes in response to an increasing number of inquiries in recent years from states facing legal action for denying services to Medicaid beneficiaries with autism, Melissa Harris, director of the Division of Benefits and Coverage at CMS, told members of the Interagency Autism Coordinating Committee recently.
Many of the court cases focused on coverage of ABA therapy, though Harris said that CMS was careful not to single out ABA or any other specific treatment in its directive to states.
“The expectation is children with autism are a population that need to have their service needs met under the state EPSDT obligation. ABA is one way to do it,” Harris said.
Medicaid coverage for kids with autism has traditionally varied from state to state. Establishing national requirements will have a huge impact, advocates said.
“This should be of enormous significance to beneficiaries across the country,” said Dan Unumb, executive director of Autism Speaks’ Autism Legal Resource Center. “It will dramatically increase access to critical, medically necessary care.”

Monday, June 30, 2014

Many Parents Of Kids With Autism Have Autistic Traits Too - Disability Scoop

Many Parents Of Kids With Autism Have Autistic Traits Too - Disability Scoop

Parents of children with autism are more likely to exhibit traits of the developmental disorder themselves, new research suggests.
In a study looking at data on moms and dads of 256 children with autism and nearly 1,400 without, researchers found that parents of those on the spectrum tended to score higher on a questionnaire known as the Social Responsiveness Scale.
“When there was a child with autism in the family, both parents more often scored in the top 20 percent of the adult population on a survey we use to measure the presence of autistic traits,” said John Constantino of Washington University who worked on the study published online this month in the journal JAMA Psychiatry.
Constantino was quick to emphasize that a higher score on the assessment is not necessarily a bad thing. More than likely, the traits parents display in small doses may be exaggerated in their children.
“It could be that a mother or a father is just a little bit repetitive or slightly overfocused on details,” he said. “The problem comes when those traits are so intense that they begin to impair a person’s ability to function.”
In cases where both parents had mildly elevated scores on the survey, researchers found that they were 85 percent more likely to have a child with autism. If just one parent scored high, there was a 53 percent increased chance of the developmental disorder occurring in their son or daughter.
Previous research has found that siblings of those with autism often have more autistic traits, but this study is believed to be the first to find as much in parents.

Wednesday, June 11, 2014

Bus Assistant Accused Of Abusing Autistic Student - FOX 29 News Philadelphia | WTXF-TV

Bus Assistant Accused Of Abusing Autistic Student - FOX 29 News Philadelphia | WTXF-TV

PORT RICHEY (FOX 13) -A Pasco County School bus assistant is on paid leave following his arrest for child abuse.
James Robert Lambert, 57, is accused of striking a 10-year-old autistic boy several times on the bus last week.
The boy's mother, Lori Lamb, got a call from a friend the last day of school about her son.
That friend asked if he was okay, and told Lori to check him for bruises and scratches.
Sure enough, Lori said, there were several marks on his arms and the back of his neck.
"I asked Jeffrey what happened and he said 'Mr. Jim hit me,'" Lamb explained.
Pasco County School officials released surveillance video from one of three cameras on board the special needs bus.
"I'm disgusted. I'm sickened. I cannot believe someone that works with children would act that way. It's just inexcusable," Linda Cobb, Pasco school spokesperson, said.
"This is an isolated incident," she added.
Lamb viewed that video for the first time Sunday.
"It was the most disturbing video," she said. "It was frightening. I couldn't believe my eyes. It was disgusting. I mean this man had an open hand and was slapping him around like he was a rag doll."
The video shows what looks like a standard bus ride. There are several loud outbursts, the school district said, from the autistic child.
Cobb said the child was cussing repeatedly.
"If I have to come back there, you're going to get it," a man identified as James Lambert said.
Then the video shows a man walk back to the boy and strike him several times.
Lamb's daughter, Lori Phelan, said her brother tried defending himself.
"You can hear Jeffrey scream, 'Stop don't do that. Don't hit me," Phelan explained.
The boy's mom contacted district transportation about the incident. It pulled the tape and eventually turned it over to law enforcement.
Lambert was arrested Friday.
Lamb said she and other parents have complained to the school district about Lambert before.
"This is the point when we start asking questions," Cobb said.
The school district has no prior disciplinary issues during Lambert's 16-year career as a bus assistant. Lambert has years of experience working with special needs kids, according to Cobb, but she says "If it happened one time, we have to look to see if it's happened before."
There may be some challenges digging into the bus assistant's past.
Cobb explained the surveillance on some busses is recorded on low quality VHS tapes, and those tapes are often recorded over with other footage.
"It there were previous incidents with low quality video, there's a chance that we don't have it anymore," she said.
The boy's mother simply wants Lambert fired and never allowed near kids again.
"It was heart-wrenching because there was nothing I could do because he was by himself on the bus," she said.
Since the incident, Lamb said her son has had nightmares about the incident, and she's thinking about homeschooling him from now on.
The school district has offered to help the family in any way.
Lamb thinks the bus driver should have stopped the bus and should be held responsible as well.
Cobb touched on those remarks and said, "The driver has a responsibility to not only keep an eye on the road, but what's going on behind them in the bus."
Lambert was scheduled to work summer school but that’s since changed.
His employment will likely be discussed at the next school board meeting on June 17th.
Suspension and termination are possible.