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.

Wednesday, September 17, 2014

Autism sets back families $35,000 a year, WA study finds - ABC News (Australian Broadcasting Corporation)

Autism sets back families $35,000 a year, WA study finds - ABC News (Australian Broadcasting Corporation)

Families of children with autism are facing tens of thousands of dollars in costs and lost income, a Western Australian researcher has found.
The study — thought to be the first of its kind in WA — set out to measure whether a delayed diagnosis increased long-term costs for families.
But the paper, published in this month's edition of journal PLOS ONE, also established the median cost of a child being diagnosed with autism as $34,900 per annum.
Curtin professor and joint author Torbjorn Falkmer said the findings, drawn from the responses of 317 Western Australian families, had huge implications for parents.
"The majority of that cost, 90 per cent of it ... is because of the lack of the chance to have employment because parents have to stay home and take care of the children with autism, because they don't get the support they need," Dr Falkmer said.
"I think the system we have right now is showing us that parents are being forced to stay home, because they can't take a job because someone's got to take care of the kids.
"This just goes to show, that if we had proper child care and of course early diagnosis as well ... the parents would be able to work."
He said the impact was not limited to families who were disadvantaged by the economic loss, but also wider society.
"Autism cuts across every socio-economic demographic from highest to lowest," he said.
"We are just losing out on people who can actually work."

Work flexibility needed: 'You never know what's going to happen'

Tanya Harding's daughter Tara, now 11, was diagnosed with autism when she was six.
Ms Harding said she had scaled back her hours and only did temporary work because she needed the flexibility.
"Work-wise, it does put a lot of pressure on," she said.
"The amount of time I have to take off because there's appointments, and trying to get the hours of work in, trying to keep a constant security at work because you never know what's going to happen."
She said the costs of therapy for children with autism were high, while daycare centres that understood their needs were difficult to find.
The kids on the spectrum, they see and they hear and they know absolutely every single thing that's going on around them.
South Guilford mother Tanya Harding
"Since [Tara] started school, ... that has been one of my biggest problems," Ms Harding said.
"In social situations, which first of all is their biggest trigger, ... it's difficult for them to understand.
"They don't process things and understand things, body language or the normal things that neuro-typical kids learn naturally.
"They do need a lot of extra supports, a lot of extra intervention, things you wouldn't even think of."
Children with autism can react to stimulus that would not affect other "neuro-typical" kids, she said.
"[In school] there's a lot of sensory processing going on around her, there's a lot of noise," she said.
"The kids on the spectrum, they see and they hear and they know absolutely every single thing that's going on around them.
"Where a neuro-typical child would be able to sit and focus on their work, and probably wouldn't even notice what's going on around them.
"But these kids are focusing on what they are trying to do plus trying to process everything going on around them, [like] the bus going past on the road on the other side of the school."

True cost may be higher, support coordinator says

The coordinator of a support group for parents of children with autism said she thought the $35,000 per annum cost may be an underestimate for many families.
"My business was thriving, I had to close it down; so I lost my career and income significantly higher than that amount," the mother, who asked not to be named, said.
Our kids are supposed to have 20 to 40 hours of therapy a week, which is just impossible to afford or to manage practically speaking.
Parent support coordinator
She said a Centrelink carer's allowance of $115 a fortnight did not begin to meet costs.
"That doesn't even cover one session a week of occupational therapy or psychology for our child," she said.
"Our kids are supposed to have at least 20 hours of therapy a week when they are small, which is just impossible to afford or to manage, practically speaking."
She also pointed out that the emotional and psychological costs of the diagnosis impacted on families well beyond finances.
"We've lost friendships, we've lost the ability to visit friends and invite friends over," she said.
"There's been a huge amount of strain on our family because of our daughter's lack of flexibility, controlling behaviour caused by anxiety and hyper-sensitivity to all sensory input.
"We've been really isolated at the schools that she's been to and just in the community in general because of those sorts of things, as well as her lack of social awareness."
But she said the solution may not be as simple as more child support or extra government money.
"There's problems in the medical system with long diagnostic wait lists, the welfare system with restrictive eligibility criteria and the child care system as well, and then on top of all that you have to deal with the impact on the child's, parents' and siblings' mental health," she said.
"It's not just as simple as ask the Government to give us more money or child care places and we'll just pop them in there and we'll go happily back to our career.
"It's certainly not that simple because its a 24 hour a day job being a parent of an autistic child."

Tuesday, September 9, 2014

Inclusion Rates For Special Education Students Vary By State - Disability Scoop

Inclusion Rates For Special Education Students Vary By State - Disability Scoop

Where a child lives may significantly impact whether they are placed in an inclusive or segregated classroom, a new national analysis suggests.
Regional differences appear to play a role in education placements for students with autism, with those living in the West more likely to attend mainstream classes while students in the Eastern United States are more frequently assigned to segregated settings, according to findings publishedonline in the journal Focus on Autism and Other Developmental Disabilities.
For the study, Jennifer Kurth, an assistant professor of special education at the University of Kansas, combed through U.S. Department of Education data on placements for children with autism in the nation’s schools between 1998 and 2008.
On average, about 37 percent of students on the spectrum spent at least 80 percent of their school day in inclusive environments. But the numbers varied considerably from one place to the next, ranging from just 8 percent in Washington, D.C. to 62 percent in Iowa.
Similarly, Kurth found extreme differences across the states in the number of students placed in self-contained classrooms and residential or otherwise separate schools.
“If child-specific factors were solely responsible for education placement decisions, one would expect states to have similar rates of inclusive, self-contained, mainstreaming and separate school placements for students with ASDs,” Kurth wrote. “Instead, … results indicate that educational placement varies by state.”
Overall, the analysis found that Colorado, Connecticut, Idaho, Iowa, Minnesota, Nebraska, North Dakota, West Virginia and Wisconsin most consistently favored inclusion.
In contrast, Alaska, Delaware, Florida, Hawaii, Louisiana, New Hampshire, New Jersey, New York, South Carolina and Washington, D.C. generally leaned toward restrictive settings.
When funding formulas for each state were examined, Kurth found that a handful of states appeared to incentivize placing students in more restrictive environments, but said that these monetary policies did not appear to have a “clear impact” on educational placement decisions.

Tuesday, September 2, 2014

Journal Retracts Autism Study Citing 'Serious Concerns' - Disability Scoop

Journal Retracts Autism Study Citing 'Serious Concerns' - Disability Scoop

A new study suggesting that decade-old data from the U.S. Centers for Disease Control and Prevention provides evidence of a link between autism and vaccines has been retracted amid concerns about its validity.
The paper published last month in the journal Translational Neurodegeneration concluded that African-American boys have a higher risk of autism if they receive the measles, mumps and rubella vaccine before age 2. The findings were based on a reanalysis of data from a 2004 CDC study.
The publication was accompanied by the release of a documentary-style video featuring Andrew Wakefield — whose since-debunked 1998 study first sparked concerns about a link between vaccines and autism — which includes allegations of fraud and a widespread cover-up by government scientists.
The video features recorded conversations between the author of the current study, Brian Hooker of Simpson University, and William Thompson of the CDC who worked on the initial study. In the video, Thompson is heard saying “we didn’t report significant findings.”
Now, however, the journal has withdrawn Hooker’s paper.
“This article has been removed from the public domain because of serious concerns about the validity of its conclusions. The journal and publisher believe that its continued availability may not be in the public interest,” reads a statement on the website for Translational Neurodegeneration.
The CDC is standing behind it initial study findings, which included information on the age of vaccination for kids with and without autism. Findings were not broken down by race because such information was not available for all study participants, the agency said.
“The data CDC collected for this study continue to be available for analysis by others,” the agency said in a statement. “Additional studies and a more recent rigorous review by the Institute of Medicine have found that MMR vaccine does not increase the risk of autism.”
For his part, Thompson said in a statement issued by his lawyer that he was unaware that Hooker was recording their conversations.
“I regret that my co-authors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics,” Thompson said. “I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race.”

Tuesday, August 26, 2014

Autism and The CDC: Now What? - Binghamton Autism & Parenting | Examiner.com

Autism and The CDC: Now What? - Binghamton Autism & Parenting | Examiner.com

What's unfolded over the past few days will impact children, parents, and individuals diagnosed with autism quite possibly harder than the first day the words "Your child has autism" ever could. The effects are already being seen in the homes, schools and now the community as the first age group with autism graduates. It is said that each person with autism will need over 3.1 million dollars in a lifetime to live with adequate support and care.
This week it was announced that the CDC may have altered studies claiming there is no link between autism and MMR vaccines. Thanks to a whistleblower who came forward this week with his identity - William Thompson, Ph.D. Dr. Thompson has first-hand knowledge of the alleged cover-up.
From the Autism Action Network's John Gilmore, "For those of you who haven’t heard the news, William W. Thompson, Ph. D., a senior research scientist at the Centers for Disease Control and Prevention (CDC) has provided information to several sources alleging that he and his colleagues, who are all senior people at the CDC, altered a 2004 study to cover-up the finding that African-American male toddlers who received the Measles Mumps Rubella (MMR) shot under the age of 36 months had 340% more autism than those who got the MMR older than 36 months. The alteration to the study was allegedly done to hide the relationship between the MMR and autism. Even after the alleged deception, the study still showed that children who received the MMR at a younger age had a higher autism rate than those who received it later in life. Yet the study was marketed as showing no affect. "
A connection may not yet be made by some of the parents who are 'new to the autism scene', to all of these findings, studies and even the reason behind why some non-profits were formed to begin with. Autism is a complex disorder that should be considered neurobiological, not mental , in its origin. These 'newly diagnosed' parents too will read and be sickened, angered and then hopefully will go into action and join the parents who have been saying all along, "This is real and we need to be heard".
It seems autism may even trump race. The rate increase in autism is so high in this country that even the rate increase in this covered-up study is not the highest increased rate. It's an issue that goes across all races, nationalities and economic lines. When you have an increase rate dating back as far as 1995 showing an approximate increase of at least 900% in the rate of autism diagnoses in children aged 8 and up, it was only a matter of time before these rates would be illustrated throughout the country...and the world. But know this - these studies of the rates were published by the CDC itself and there are alleged cover-ups from the start of these autism rate studies. So now, there's a cover-up of an even higher rate? It's damage that can't be undone.
The next few days and weeks will hopefully unfold the next chapter in this long, unnecessary journey that parents of children with autism must travel. Stay tuned here.

Monday, August 25, 2014

Screening Students for Autism Spectrum Disorder (ASD) - West Palm Beach Autism & Education | Examiner.com

Screening Students for Autism Spectrum Disorder (ASD) - West Palm Beach Autism & Education | Examiner.com

There has been a dramatic worldwide increase in reported cases ofautism over the past decade. The prevalence rates have risen steadily, from one in 150, to one in 110, and now to one in every 68 children. This represents a 78 percent increase in the number of children identified with an autism spectrum disorder (ASD) over the past decade. Likewise, since Congress added autism as a disability category to the Individuals with Disabilities Education Act (IDEA), the number of students receiving special education services in this category has increased over 900 percent nationally. Yet, compared to population estimates, identification rates have not kept pace in our schools. It is not unusual for children with less severe symptoms of ASD to go unidentified until well after entering school. As a result, it is critical that school-based educational support personnel (e.g., special educators, school counselors, speech/language pathologists, social workers, and school psychologists) give greater priority to case finding and screening to ensure that children with ASD are identified and have access to the appropriate intervention services.
Screening and Identification
Until recently, there were few validated screening measures available to assist school professionals in the identification of students with the core ASD-related behaviors. However, our knowledge base is expanding rapidly and we now have reliable and valid tools to screen and evaluate children more efficiently and with greater accuracy. The following tools have demonstrated utility in screening for ASD in educational settings and can be used to determine which children are likely to require further assessment and/or who might benefit from additional support. All measures have sound psychometric properties (e.g., diagnostic validity), are appropriate for school-age children, and time efficient (10 to 20 minutes to complete). Training needs are minimal and require little or no professional instruction to complete. However, interpretation of results requires familiarity with ASD and experience in administering, scoring, and interpreting psychological tests.
The Autism Spectrum Rating Scales (Short Form) (ASRS; Goldstein & Naglieri, 2009) is a norm-referenced tool designed to effectively identify symptoms, behaviors, and associated features of ASD in children and adolescents from 2 to 18 years of age. The ASRS can be completed by teachers and/or parents and has both long and short forms. The Short form was developed for screening purposes and contains 15 items from the full-length form that have been shown to differentiate children diagnosed with ASD from children in the general population. High scores indicate that many behaviors associated with ASD have been observed and follow-up recommended.
The Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003), previously known as the Autism Screening Questionnaire (ASQ), is a parent/caregiver dimensional measure of ASD symptomatology appropriate for children of any chronological age older than four years. It is available in two forms, Lifetime and Current, each with 40 questions. Scores on the questionnaire provide a reasonable index of symptom severity in the reciprocal social interaction, communication, and restricted/repetitive behavior domains and indicate the likelihood that a child has an ASD.
The Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012) is a brief quantitative measure of autistic behaviors in 4 to 18 year old children and youth. This 65-item rating scale was designed to be completed by an adult (teacher and/or parent) who is familiar with the child’s current behavior and developmental history. The SRS items measure the ASD symptoms in the domains of social awareness, social information processing, reciprocal social communication, social anxiety/avoidance, and stereotypic behavior/restricted interests. The scale provides a Total Score that reflects the level of severity across the entire autism spectrum.
A Multi-Tier Screening Strategy
The ASRS, SCQ, and SRS-2 can be used confidently as efficient first-level screening tools for identifying the presence of the more broadly defined and subtle symptoms of higher-functioning ASD in school settings. School-based professionals should consider the following multi-step strategy for identifying at-risk students who are in need of an in-depth assessment.
Tier one. The initial step is case finding. This involves the ability to recognize the risk factors and/or warning signs of ASD. All school professionals should be engaged in case finding and be alert to those students who display atypical social and/or communication behaviors that might be associated with ASD. Parent and/or teacher reports of social impairment combined with communication and behavioral concerns constitute a “red flag” and indicate the need for screening. Students who are identified with risk factors during the case finding phase should be referred for formal screening.
Tier two. Scores on the ASRS, SCQ, and SRS-2 may be used as an indication of the approximate severity of ASD symptomatology for students who present with elevated developmental risk factors and/or warning signs of ASD. Screening results are shared with parents and school-based teams with a focus on intervention planning and ongoing observation. Scores can also be used for progress monitoring and to measure change over time. Students with a positive screen who continue to show minimal progress at this level are then considered for a more comprehensive assessment and intensive interventions as part of Tier 3. However, as with all screening tools, there will be some false negatives (children with ASD who are not identified). Thus, children who screen negative, but who have a high level of risk and/or where parent and/or teacher concerns indicate developmental variations and behaviors consistent with an autism-related disorder should continue to be monitored, regardless of screening results.
Tier three. Students who meet the threshold criteria in step two may then referred for an in-depth assessment. Because the ASRS, SCQ, and SRS-2 are strongly related to well-established and researched gold standard measures and report high levels of sensitivity (ability to correctly identify cases in a population), the results from these screening measures can be used in combination with a comprehensive developmental assessment of social behavior, language and communication, adaptive behavior, motor skills, sensory issues, and cognitive functioning to aid in determining eligibility for special education services and as a guide to intervention planning.
Concluding Comments
Compared with general population estimates, children with mild autistic traits appear to be an underidentified and underserved population in our schools. There are likely a substantial number of children with equivalent profiles to those with a clinical diagnosis of ASD who are not receiving services. Research indicates that outcomes for children on the autism spectrum can be significantly enhanced with the delivery of intensive intervention services (National Research Council, 2001). However, intervention services can only be implemented if students are identified. Screening is the initial step in this process. School professionals should be prepared to recognize the presence of risk factors and/or early warning signs of ASD, engage in case finding, and be familiar with screening tools in order to ensure children with ASD are being identified and provided with the appropriate programs and services.
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers. Dr. Wilkinson is also editor of a new Volume in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools.
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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.).