SCHAFER AUTISM REPORT             “Healing Autism:

                             No Finer a Cause on the Planet”

   NOTE CALENDAR DEADLINE TOMORROW! FOR JULY UPDATE

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Wednesday, June 25, 2003               Vol. 7  No. 134

    COMMENTARY

   * Now What? What the Fight Over Special Ed Reform Is All About

    RESEARCH - Abstracts, contains technical language.

   * Pathological Demand Avoidance Syndrome: A Necessary Distinction

     Within The Pervasive Developmental Disorders

   * Exploratory Subsetting of Autism Families Based on Savant Skills

     Improves Evidence of Genetic Linkage to 15q11-q13.

    LETTERS

   * More Responses to Dr. Danczak

   * More on “Ill-Founded Claims. . .”

   * RE: To Build a Baby

COMMENTARY

Now What? What the Fight Over Special Ed Reform Is All About

      [By Calvin and Tricia Luker, OurChildrenLeftBehind.com. For more articles like this visit weblink below. Commentaries do not necessarily reflect the views of the Schafer Autism Report.  But this one does. -LS.] http://www.bridges4kids.org.

      With this post we would like to try to recapture history and look forward now that the Senate Bill has been released. Our Children Left Behind is receiving email questions which we hope to answer.

      Before going forward however, we ourselves have heard from families with have children with disabilities and families who have children without disabilities. This tells us that the word is getting out through the many internet and list-serve resources available to families. We have eight days left in the Senate Bill comment period. Time is of the essence, and those who have deeper questions might better spend their time following some of the web resources they can link to from www.ourchildrenleftbehind.com. There are 6.6 million children and young adults receiving services under the Individuals with Disabilities Education Act [IDEA] and 6.6 million different vantage points and stories accompanying our children. While we believe all of us should aggressively seek full information so that we can develop our own positions on the reauthorization process, we maintain that it is the individual stories – of success and failure – that are most critical for our legislators to hear.

Now on to the questions.

      What is IDEA? IDEA is the Individuals with Disabilities Education Act, first passed after decades of family effort in 1975. The history of IDEA is briefly discussed in our first article at the bottom of this page.

      What is the House Bill? HR 1350 is the Bill that passed the US House of Representatives on April 30, 2003. Articles on Ourchildrenleftbehind and our links more completely detail what H.R. 1350 would do if it became law. Suffice it to say that it guts all fundamental protections for children who are disciplined for conduct related to their disability; guts the administrative due process procedures that permits parents to challenge school decisions on programming, evaluations, placement, etc.; permits 3-year IEPs; eliminates short-term objectives; leaves family attorney fee schedules to the whim of state governors without providing equal power for that governor to set equal fees for school district attorneys; permits 10 states to seek federal waivers of the application of IDEA laws; and other similar provisions. We think it is bad news for kids and families.

Sixty-nine+ consumer representative and family advocacy groups and

organizations have publicly opposed HR 1350 for various reasons.

      What is the Senate Bill? SB 1248 is the Senate’s version of the Bill amending IDEA. It was released last week and we still are digesting it – comparing it to IDEA ‘97 [the current law] and HR 1350. The Senate Bill, from our reading, gives back some of what HR 1350 would remove, but still has deficits in the areas of due process protections, statute of limitations, short term objectives, and other similar issues. There is a link on this website, to a side-by-side-by-side comparison of the laws done by Deb Brown at http://www.geocities.com/vshr1350/SIDEBYSIDE.htm.

      What is the recommended stance? Students, parents, families, advocacy and consumer based organizations, many educators and policy makers are taking the broad position that IDEA ‘97, which only has been fully implemented for less than two-school years in most states, should be carry forward in thrust and protection for students. Most of the changes found in HR 1350 came from school administrators and school boards, rather than from families who pretty well were cut out of the HR 1350 drafting process. SB1248 is more of a compromise between what HR 1350 proposes and what IDEA ‘ 97 currently requires. While the Senate seems to have listened more carefully to students and families than did the House of Representatives, its Bill still reflects many of the changes advanced by school administrators.

      The common recommendation on the student/family side is that student’s and families should concentrate on individual stories that show why IDEA ‘97 should not be amended or show why the amendments proposed by the House and Senate Bills should be rejected. It is from our perspective a common fight with highly individualized features.

      What are the present talking points? There are many, many informative websites that have analyzed both Bills and have formulated talking points. Again, we suggest that you follow our links to those sites to gain more information about potential talking points. We find the DREDF and NAPAS sites particularly helpful.

      Why reauthorization now? If no reauthorization is done will IDEA ‘97n expire? Part B of IDEA, which addresses the eligibility and IEP process and contains the primary procedural safeguards is permanently authorized. If it is not amended this year, its provisions will carry forward. Part A, which contains the Congressional findings and purpose, definitions, creates the Office of Special Education Programs, abrogates State Sovereign Immunity and requires promulgation of regulations would continue in force without any Congressional action. Part C, which covers infants and toddlers with disabilities and Part D which applies to special education program improvement, information dissemination, research and evaluation activities are up for reauthorization. What “reauthorization” means in this context is that Congress must pass a law permitting itself to appropriate funds to operate the services and requirements of Part C and D.

      Who is behind the move change IDEA ‘97 so significantly? There are many theories behind why special education is under attack now. Some attribute the effort to trying to mesh special education law with the provisions of the No Child Left Behind Act which passed Congress in 2001. Others say the changes are being advocated by school-related persons and entities concerned with paperwork, timing requirements and other administrative responsibilities they claim over-burden them and deflect from their ability to concentrate on teaching activities. Still others claim that these changes are inspired by individuals and organizations who historically are insensitive to the needs of students with disabilities and their families and believe either that special education law has failed, or believe that special education law has succeeded and need not be so comprehensive or laden with the safeguards that were required in its earlier days.

      Our personal view is that special education law is only one part of the safety net that was put into place and should remain in place for people with disabilities and their families. It is not just special education that is under attack in Washington today. Medicaid is under going a similar gutting. Laws protecting people with disabilities from homelessness and housing discrimination are experiencing dramatic decreases in funding or reduced protection. Legislative gains made in recent years to give people with disabilities more hope and help in being included in community settings are being threatened and many people are being forced again to look to larger facilities as the only remaining living setting for people with disabilities. Surely part of this change – this threat to what we have fought so long and hard to achieve for people with disabilities – is a product of the current Administration’s budgetary priorities and declining governmental revenues.

      We think that creates a need for ALL of us to be more vocal and to stand up for ourselves and our family members who have disabilities so that our funding needs are not permitted to fall any further down in the budget priority list. We also think that part of what is driving the current action to weaken the federal special education laws is a belief on the part of many in the Executive and Legislative branches that States should have more control over both educational policy and educational funding, and that the federal government should give that power to the states.

      We reject that theory because our nation’s history, from before the civil war to the present, has been that states often have been unwilling or unable to create or enforce the basic human rights, including the right to a free appropriate public education, that we have been able to achieve through national law. Again, state’s rights seems to be a popular cry in Washington, but where essential human rights and dignity are at stake, we can not entrust not can we trust states to either legislate inclusive policy or to fund it, especially when, as now, state governmental revenues are being sorely impacted by federal budgetary priorities and practices.

      Some might look at the family perspective or the family point of view in this special education battle as rhetoric. We think that when organizations and individuals form around talking points and common criticisms of the proposed amendments some rhetoric is necessary to offset the highly organized, well-oiled and heavily taxpayer funded lobby operated by school administrators and school boards. Some common voice from the families is essential if for no other reason than to let Congress know we are out here, we are watching AND we vote. But we know from our own experience that talking points only go so far in describing what life looks like for the individual family.

      Frankly, we can’t create or pay for a lobby organization any where near the equal of our opponents in this battle. We are too busy fighting for ourselves, our families and our family members who have disabilities. This website is but one of many individual and small group activities that have sprung up since March to fight the powerful individuals and organizations that have the current administrations ear. We are proud of what we have been able to do as a website and are equally proud of what hundreds of thousands of others involved in the fight to save IDEA have been able to do in their communities, states and in cyberspace.

      We make no apology. Our parents and grandparents fought for decades to force open the doors of free public education – Ben Franklin’s greatest idea – to children with disabilities. Those doors were not opened to our children until our country was 199 years old. We do grave injustice to our fore-parents and their efforts, and even graver injustice to ourselves and our children and their expectations if we stand by while these gains are taken from us. For us it is not rhetoric, it is reality.

      If we won’t fight for our own kids who will?  We have eight days to solidify our voices and express them to our Senators before the public comment period established by the HELP Committee is closed. After these eight days pass the ball rests squarely on the floor of the Senate. We can continue our fight, but have been told in no uncertain terms that further changes will be unlikely if not impossible. We don’t have to accept that, nor will we, but we must do what we can, working individually and together, to make the next eight days count. Our children are counting on us.

      Never question the motivation or determination of parents who are protecting their children.

      Calvin and Tricia Luker HTTP://www.ourchldrenleftbehind.com

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* * *

RESEARCH - Abstracts, contains technical language.

Pathological Demand Avoidance Syndrome: A Necessary Distinction Within The Pervasive Developmental Disorders

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=12818906&dopt=Abstract

Newson E, Le Marechal K, David C.

Early Years Diagnostic Centre, 272 Longdale Lane, Ravenshead, Nottingham NG15 9AH, UK. diagnostic-centre@sutherlandhouse.org.uk

      A proposal is made to recognise pathological demand avoidance syndrome

(PDA) as a separate entity within the pervasive developmental disorders, instead of being classed under “pervasive developmental disorder not otherwise specified” (PDDnos, DSM-IV). Discriminant functions analysis shows PDA to be significantly different on many counts from classic autism and Asperger’s syndrome, both separately and together, including an equal sex ratio (150 cases).

      Demand avoidance using social manipulation is seen in all children, which strongly contrasts with the features of autistic spectrum disorders. A criterial structure is described, supported by statistical data from a random sample of 50 children diagnosed with PDA, together with a follow up sample of 18 young adults.

      PMID: 12818906 [PubMed - in process]

* * *

Exploratory Subsetting of Autism Families Based on Savant Skills Improves Evidence of Genetic Linkage to 15q11-q13.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=12819446&dopt=Abstract

Nurmi EL, Dowd M, Tadevosyan-Leyfer O, Haines JL, Folstein SE, Sutcliffe JS.

      OBJECTIVE Autism displays a remarkably high heritability but a complex genetic etiology. One approach to identifying susceptibility loci under these conditions is to define more homogeneous subsets of families on the basis of genetically relevant phenotypic or biological characteristics that vary from case to case.

      METHOD The authors performed a principal components analysis, using items from the Autism Diagnostic Interview, which resulted in six clusters of variables, five of which showed significant sib-sib correlation. The utility of these phenotypic subsets was tested in an exploratory genetic analysis of the autism candidate region on chromosome 15q11-q13.

      RESULTS When the Collaborative Linkage Study of Autism sample was divided, on the basis of mean proband score for the “savant skills” cluster, the heterogeneity logarithm of the odds under a recessive model at D15S511, within the GABRB3 gene, increased from 0.6 to 2.6 in the subset of families in which probands had greater savant skills.

      CONCLUSIONS These data are consistent with the genetic contribution of a 15q locus to autism susceptibility in a subset of affected individuals exhibiting savant skills. Similar types of skills have been noted in individuals with Prader-Willi syndrome, which results from deletions of this chromosomal region.

      PMID: 12819446 [PubMed - as supplied by publisher]

* * *

LETTERS

More Responses to Dr. Danczak

      I hope that Dr Danczak reads your bulletins. In his letter to the Telegraph (see below), he suggests that video footage of some children at six weeks are already suggestive of delayed development and this is “long before vaccination exposure”. However, at six weeks, a baby in utero will have been exposed to the mother’s vaccination regime and also the first DPT shot and perhaps more? Am I right? Has Dr Danczak dismissed the mercury connection?

      - Pamela Reitemeier

* * *

       This is a response “Ill-Founded Claims About Risks of Vaccination” posted on June 24, 2003.

       The children who received the DPT vaccine 60 years ago did not receive 22 vaccinations in the first 2 years of life.

       I was stunned when I counted the number of shots my son received in his first 2 years of life.

       Some of the research points to the number of vaccines NOT just a particular vaccine. I would not want to see any child fall victim to those diseases, but living with a child with autism can be a nightmare too; some parents they have “lost” their child forever.  Some can get better and others will not.

       As for claiming the increase in diagnosed cases of autism on “better diagnosis and changes in diagnostic classification detection” Please. I do not understand how “experienced” doctors or professionals who deal with children’s developmental issues can mistake autism for something else.

       The theory of “better detection” sounds like people are trying to take the attention away from vaccines or various forms of mercury poisoning including amalgam fillings and tainted fish consumption.

        Unfortunately, in the world we live in the almighty dollar means more than the children’s lives.

       So, if there is truly a connection between the vaccines that were mandated by the government(s) and autism, those very same government(s) are not going to admit it anytime soon.

       This kind of reminds me of the tobacco companies.

       - Pam LeProhon

* * *

More on “Ill-Founded Claims. . .”

      I am just wondering whether Dr Sayed Ahmed and Vincent McKeown are aware that not all DTP vaccinations are the same - ie some contain mercury and others do not.  The information is easily found on the net.

      I am also wondering whether they read the news reported in yesterday’s SAR (23 June 03) about the study carried out by Dr Vijendra Singh PhD and Ryan L Jensen BS in Pediatric Neurology Vol 28, No 4 which shows that MMR and autism are linked.

      Speaking only as a parent of an autistic child, I try to take notice of these details as it seems it is finally down to us to keep up the pressure for good, honest research to be undertaken and reported without any spin.

      As always many thanks to this newsletter for constantly bringing news of all the developments from around the world.

      -Susie Farouggia - Greece

      [Editor’s comment: I find it interesting that neither the Mercury and Autism research, nor the MMR and Autism research reported here this week have been mentioned anywhere in the American press.  In the UK, the press gushes over reports like these.  In the United States, this publication is the only place to find this information so compiled, and without all the frolic and hype.  Well, a little frolic now and then. . . -LS.]

* * *

RE: To Build a Baby

      Fortunately for Molly she was born at a time when genetic “profiling” allowed the selection of a sibling that could save her.  It was also fortunate that Molly was born before genetic profiling was widely available. Will it be a better future when parents can always select a “perfect” embryo while discarding less-than-perfect Mollys?  Fortunately, Noah, my wonderful, autistic son, was born before I could be faced with this moral dilemma.

      - David Eland, Lenexa, KS

      [Editor’s comment: The “Building a Baby” option is probably a main, but not exclusive vision of many who are ardently pushing for genetic research into autism. It is entirely possible, however, that the purported “autism genes” are too general or complex to be reliable markers for the autism spectrum alone.  It may turn out to be easier, and less ethically challenging, to discover and control the environmental assaults that precipitate/cause the disorder. If you have a peanut allergy, the best  “cure” for it may be to stay away from peanuts, rather than to genetically engineer your kids out of it. But you first have to discover that peanuts are the problem. Genetic research cannot be the only approach. -LS]

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Lenny Schafer, Editor mailto:schafer@sprynet.com

Sources:  Edward Decelie   Ron Sleith   Kay Stammers

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