Autism

Newsletter

January 2001    Vol. 5   # 1

JFS
P.O. Box 5551
Elgin, IL  60121-5551

 (have you joined the AutismNews on-line list yet?  Email me for details.)
[email protected]

To subscribe to the snailmail version of AutismNews donate $15 for 12 issues,  checks made out to “JFS”.  Extra donations to help send  complimentary copies to other first-time readers appreciated.  This is not written for   profit -  then it would seem like WORK!!!! Note I do try and post most of this  on-line  each month, which is free

Thanks to all of this month’s contributing Newsletter Moms and Dads!  Anybody with news to share, deadline is kinda sorta the third Monday ,  monthly,  for  the next   issue.

Contents

Learn Negotiation Skills That Will Help You in That Upcoming IEP Meeting
Special Education Legal Rights ,  Strategies and Resources
Key Issues, Changes and Differences in Federal and Illinois Special Education Law
Autism, MMR and 60 Minutes
Informative New Video

Learn Negotiation Skills That Will Help You in That Upcoming IEP Meeting!*

Jennifer L Bollero, attorney, will be offering several opportunities for parents of special needs children to develop their negotiation skills in time for Spring IEPs! Ms. Bollero is a former a commercial litigator and currently an arbitrator and adjunct faculty member at Elgin Community College Paralegal Program.  She  also has  a nine-year-old  daughter with autism.

Believing that special needs children do better in school when ALL team members bring their full selves to the task, Ms. Bollero has developed an "eight-step" program designed to reduce conflict and encourage teaming.  Because parents are in the best position to effectively communicate their children's needs, Ms. Bollero believes that they can negotiate to solve most problems efficiently and sustain school relationships in the process.  However, her program also trains parents on how to effectively prepare for Due Process or other remedies, should that be necessary.

Ms. Bollero offers her seminars in several different locations and time periods to meet the needs and/or interests of parents.

A two-hour overview of the eight-step process will be offered at the sites below. This presentation is meant to introduce parents to the basic workings of IDEA and Section 504, and to expose the parents to the eight steps.  Minimal handouts will be given out.  These seminars are free to parents:

January 16, 2001:  Center for Speech/Language, Elmhurst, IL  (630) 530-8551

February 1, 2001: Jane Shover Easter Seals, Elgin, IL (847) 742-3264

March 19, 2001:  Community Therapy Services, Geneva, IL (630) 208-8880

For parents who want a more comprehensive understanding of IDEA, Section 504 and the eight steps, Ms. Bollero (along with Pat Stauch) will be giving a full day workshop, sponsored by StarNet, Region II.  This workshop will allow parents to fully explore and consider the dynamics of how effective negotiation can improve an IEP. Materials will be available at no charge. This workshop will be offered to parents and professionals alike, and is free. Registration closes at 75 participants, but there is room [as of 12/21] for about 20 more people. The workshop will be:

February 21, 2001: Roosevelt Univ., 1400 N. Roosevelt Blvd., Schaumburg, IL.  Register by calling StarNet,  Region II (847) 803-3565

If parents want all the benefits of the workshop, but stretched over two days, Ms. Bollero is offering a two-day, non-credit class at Elgin Community College.  This smaller class setting will allow students to interact with the instructor and each other, as well as offer assignments and role plays designed to allow parents a "dry run" of negotiation skills by actually doing them.  The students will explore the eight-steps by applying them to a fictional child, for whom they will be advocating. Ms. Bollero, in addition to lecture, will role play with students so they can get a "feel" for how negotiation really works. Materials will be included. There will be a tuition for this course.  The course will be offered:

Saturdays March 10, and 17, 2001: Elgin Community College (874) 697-1000 (ask for non-credit registration).

If anyone has any questions regarding the program or seminars, please feel free to contact Jennifer L. Bollero at (630) 584-3550 or by e-mail at [email protected].

*I have also listed most of these appearances by Ms. Bollero under meetings or conferences as appropriate. Jennie’s above explanation of what how much she aims to cover in these presentations will  aide you in deciding which to attend.
 

Contents

 Special Education Legal Rights ,  Strategies and Resources

Getting Your Child With Autism What They Are Entitled To Under Federal Laws

The above is a  manual  by Reed Martin, J.D. that addresses the unique issues in advocating for a child with autism. Contents include:
1. Introduction
2. How Is Autism Defined?
3. How Early Should Publicly Provided Services Begin?
4. Can the Parent Choose
The Methodology?
5. "Least Restrictive Environment" Is Not A License for "Dumping" Children Into Regular Education.
6. When Your Child's Behaviors Interfere With Their Learning Or The Learning Of Others Around Them A Positive
Approach To Behavior Change Is Required.
7. Your Regular School Staff And Special Ed Staff Must Become
Knowledgeable About Autism.
8. Getting Access To All Of Your Child's Records And What To Look For.
9. Creating The Written Plan
For Your Child.
10. Transition Planning -- Making Sure Your Child Has The Future They Deserve.
11. Using Section 504 And The ADA To Advocate For Your Child.
12. Using All Your Complaint
Mechanisms Effectively.
13. Do You Need To "Go Private" To Get The Services Your Child Needs?
14. What About Attorneys Fees
 and Damages?
15. Keep Advocating: There Are Real Success Stories!
 

Cost for this book is $39.95 ($3 s/h)
Make checks payable to: Reed Martin.
 

 Send to:
P. O. Box 487
Morgantown, WV 26507

and provide your name, address, city, state, zip and total enclosed.  If you wish to order with a credit card call 304/598-3406.

Contents

Key Issues, Changes and Differences in Federal and Illinois Special Education Law.

Why methodology belongs in your IEP.

From the Newsletter Dad,  an attorney I sent on a fact finding mission to the FRCD sponsored presentation  on this topic given by  attorney Matt Cohen on December 9.  This is his report:
 

The Family Resource Center on Disabilities is a great organization which provides training and information to parents of children with disabilities.  This article is about their free conference held on December 9, 2000, but first, a reminder that throughout the year they will send you pamphlets such as “How to Participate Effectively in Your Child’s IEP Meeting” and “How to Prepare for a Successful Due Process Hearing.”  They provide parent training every Tuesday morning, the first Tuesday evening of the month and the third Saturday of the month.  There are also parent-to-parent training work-shops on Thursday, January 18 and 25, 2001.  FRCD will also host an all-day seminar on the Least Restrictive Environ-ment (LRE), including IEP & LRE, Services & LRE, Accommodations & LRE, and Assistive Technology & LRE, in the Western Suburbs on Saturday, February 17, 2001.  Call (312) 939-3515, fax (312) 939-3519, for details.  If  it as good as the one on December 9, it will be well worth your while.

Please remember that the Law is constantly changing and may not apply in particular instances.  Do not rely on the content of this article as legal advice.
 

 On December 9, 2001, FRCD presented attorney Matthew D. Cohen, who covered the Key Issues, Changes and Differences in Federal and Illinois Special Education Law.  In 1997, Congress passed the 1997 amendments to IDEA, the Individuals with Disabilities Education Act, which is the law guaranteeing educational rights to children with disabilities.  In 1999, the Federal Department of Education issued its regulations which give the details to implement the law.  The Illinois State Board of Education issued its regulations for Illinois schools in August 2000.  State rules cannot restrict a right protected by Federal law.

 One of the most important changes in recent Federal law deals with methodology.  As background, twenty years ago the U.S. Supreme Court issued an opinion interpreting the prior law, in which it stated that as long as the school district had a reasonable methodology leading to a student’s progress, the parents could not require the school to adopt a different method.  Schools often interpreted this decision to say that the parents could not discuss methodology at an IEP meeting, even when the schools had no methodology.

 The 1997 reauthorization of IDEA and the 1999 regulations eliminated this misinterpretation, as follows:
 

“Sec. 300.26  Special education.
    (a) General. (1) As used in this part, the term special education means specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability, including--
    (i) Instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings;
    (3) Specially-designed instruction means adapting, as appropriate to the needs of an eligible child under this part, the content, methodology, or delivery of instruction--
    (i) To address the unique needs of the child that result from the child's disability; and
    (ii) To ensure access of the child to the general curriculum, so that he or she can meet the educational standards within the jurisdiction of the public agency that apply to all children.”

 This section is one of the most important clarifications of the law.  Matt Cohen, esq., warned however, that the definition of “Specially designed instruction”
was conspicuously omitted from the August 2000 Illinois regulations.  Beware of school districts which cling to the old evasions and will not discuss methodology at the IEP meeting on the basis that the Illinois regulations are silent on the issue.  Under the supremacy clause of the U.S. Constitution, State regulations cannot take away a Federal right.  Insist the IEP team discuss methodology and state their reasons in writing.

 Besides requiring methodology, The 1999 regulations specify:
 

“Sec. 300.347  Content of IEP.
    (a) General. The IEP for each child with a disability must include--...
    (3) A statement of the special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child, and a statement of the program, modifications or supports for school personnel that will be provided for the child--
    (i) To advance appropriately toward attaining the annual goals;
    (ii) To be involved and progress in the general curriculum in accordance with paragraph (a)(1) of this section and to participate in extracurricular and other nonacademic activities; and
    (iii) To be educated and participate with other children with disabilities and nondisabled children in the activities described in this section.”

 Appendix A to the regulations also reiterates that the IEP must address how the child will be involved in and progress in the general school curriculum and what special education and other services and supports must be described in the IEP.
 This regulation is echoed in the Illinois regulation, 23 Ill. Admin. Code 226.230(a)(7).

 The 1997 IDEA and the 1999 regulations do more than say that an IEP is setting the annual goals.  The IEP team, which includes the parents, must determine the how, how the child will meet those goals.  The schools cannot say leave it to the schools to figure it out has the school year elapses.  The IEP must specify the mod-ifications, supports and services, and the Special Education, which includes method-ology.  Mr Cohen also made the point that regulation 300.121(e) states that each State shall ensure that a free, appropriate public education is available to any individual child with a disability who needs special education and related services even the child is advancing from grade to grade.

 Mr. Cohen highlighted another big change in the Illinois regulations involving the timelines for referrals for evaluations.  The ISBE changed Section 226.75 to state that the date of referral runs from the date parental consent or signature is obtained rather from the date the parents request the evaluation.  This definition ties in with the timelines for completing the evaluation in section 226.110, as a District has 60 days to complete the evaluation.  The danger in the change lies in the potential lag time in the District sending out the consent form to the parents.  Parents can eliminate this lag time by consenting to the evaluation at the time they request the referral, although they then lose control over the particular tests to which they are consenting.  Two improvements are that at the end of the 60 days the IEP meeting must also be completed and that if there are fewer than 60 school days left in the school year, the IEP must be in effect by the start of the next school year.

To request more information about the FRCD and all their conferences/publications/ newsletter call or write:
 

Family Resource Center on Disabilities
20 East Jackson Blvd., room 300
Chicago, IL  60604
312/939-3513
800/952-4199 (Illinois only).

The following ran in the FEAT on-line newsletter November 30, 2000.  I reprint it here for benefit of those of you not on-line.
 

Autism, MMR and 60 Minutes

Another Pediatrician’s Perspective

“The recent 60 Minutes program on MMR vaccine was an excellent awareness-raising report on the debate surrounding regressive autism and its explosion.  What struck me most are the following:
      *  The tragic pictures of the little boy who opened the show and his parents’ heart-breaking pain and suffering;
      *  The beautiful mother, standing with her arm raised, like most of the audience, because she believed her child was injured by the MMR vaccine -- caught crying by the scanning camera; and
      *  Andrew Wakefield, sincere, truthful, principled, unassuming and ready to sacrifice everything in the pursuit of the truth.

First, my background:  I am trained in infectious diseases and pediatrics.  During my training I personally cared for children and adults with serious and complicated contagious illnesses. I subsequently “really” practiced pediatrics and was a school physician for 34 years.  I personally administered my own vaccines and enforced every Health Department mandate. I also informed myself thoroughly about regressive or late onset autism. Because of research I am now conducting, I strongly suspect that there is an autism-vaccine connection (*below).

The following crucial facts were unfortunately not discussed in the 60 Minutes piece:
 *  The measles virus was isolated from the gut wall of children with autism. It was further identified by very precise PCR techniques by O’Leary, and was confirmed to be of vaccine origin by Kawashima and his group.
 *  Sixty new cases with autistic enterocolitis were reported by Wakefield in the September 2000 issue of the American Journal of Gastroenterology.
 *  Children with autism have statistically significant co-existing high titers of MMR and Myelin Basic Protein antibodies (Singh).

The authorities like to repeat that Wakefield’s findings have not been duplicated by other researchers.  This may be true for the case of children with autism but only because no one has tried to.  Indeed after seeing the onslaught of attacks on Dr. Wakefield because of his research, it is unlikely that anyone would want to.  Sabra et al at Georgetown University, however, have described identical ileal lymphoid nodular hyperplasia in the guts of children with ADHD.

Thousands of parents believe that the MMR vaccine has contributed to their children’s autism.  They have pictures and videos to prove the ‘before ’ and ‘after.’  They speak of the MMR being the only new event in their child’s life in that period between normal development and autistic regression.  They point out their children’s marked immune system dysfunction, something with which they were not born.

These parents certainly did not acquire their conviction from reading about the twelve cases reported in Dr. Wakefield’s first paper.  Nor would they simply be looking for a scapegoat.  Please remember, and always remember, their children were normal and their disease is acquired. Regardless of how often the authorities attest that the MMR vaccine is safe, an increasing number of parents here and in Europe are refusing to believe them.  Safety trials not looking beyond 3 weeks post-vaccination convince no one.  Equally alarming to the parents is the fact that the infectious disease specialists and epidemiologists who make decisions and mandate vaccines have little knowledge of autism and its immune etiology.

It is inevitable that the present intransigent and unbending attitude of the vaccine authorities will lead to measles, mumps and rubella outbreaks.  When these diseases return, and they will, the authorities-- and the authorities alone-- will have to be held responsible.  There is no reasonable justification to tell a parent who is adamant about not using MMR but who is willing to return three times for the monovalent vaccines, that they are simply not available and/or illegal.  Dr. Wakefield only asked that more research be done into the triple live-virus vaccine.  To intimate that his research will cause epidemics is a flagrant distortion of the truth.

It took us a long time to perfect the single (monovalent) mumps, measles and rubella vaccines.  Most pediatricians and parents trusted them. Epidemics stopped and few adverse vaccine reactions were reported.

When the MMR vaccine was licensed in 1971 and became available shortly thereafter, many pediatricians refused to use it and continued vaccinating with the monovalent products at 3-6 months intervals.  These pediatricians were concerned with the potential decreased efficacy and increased side effects of the combination.  Many of us were also aware that no long-term safety studies of the MMR vaccine were available, on going or contemplated.

Two things happened simultaneously in the late seventies to change things dramatically:
    1.)  HMOs arrived on the scene and cut down the number of “regular check-ups”
     2.)  The State Health Departments started providing the vaccines free of charge to the practicing pediatricians and GPs. The Health Departments made it clear that it was cheaper to buy and easier to store and distribute the 3 in 1 vaccine and, on that basis, simply mandated its use. Pediatricians had no choice but to comply.

To say that we are not sure the parents will bring the child back for subsequent shots is false.  Certainly this argument could be made in a third world country but certainly not in the West. Any “practicing” pediatrician knows that a parent is much more likely to keep a doctor’s appointment if a vaccine is due.  One must be cautious not to insult parents’ intelligence.

Secondly, to say that added injections will cause pain and discomfort to the child is ridiculous.  I believe that the pain caused by an aqueous injection administered sub-cutaneously by an experienced health professional does not even come close to the living hell of Autism.

Interestingly, the only people who raise these two arguments are members of vaccine boards and committees and rarely treat patients.  Wouldn’t it be more appropriate to have the parents make that important choice if they have such marked reservations?  After all it is their child.  As well, it seems hypocritical to mention pain when the vaccine authorities are introducing new vaccines of questionable efficacy and safety all the time It was intimated on 60 Minutes that a multitude of studies involving large populations has proved that the MMR vaccine was perfectly safe and did not cause autism.  THIS IS NOT TRUE.  There is NO long-term safety research proving that MMR does not cause autism.  There is a sole epidemiological study by Taylor et al, often publicized as proving decisively that autism did not increase in the UK after 1988, when MMR was introduced with great fanfare.  This study was financed and ordered by The Medicines Control Agency and The Public Health Laboratory Service.

A noted British statistician whose specialty is medical research, looked carefully at the Taylor study.  He wrote:  “A myth is being created that the Taylor et al study shows that MMR is not triggering autism. The evidence presented in their Lancet paper is [in fact] consistent with the MMR triggering a substantial proportion of autism cases in this North London population.  The study does not find evidence to support an association between MMR and autism onset because of a flaw in the study design.  This does not mean that such an association does not exist.”

The reason for this expert’s comments is that the “case series design” used in the Taylor study is well known to be statistically unsatisfactory for chronic conditions and inadequate for a small sample (293 confirmed
cases).  Even the authors of the study themselves alluded to its methodological problems.

At times, while figures clearly demonstrate an increase in autism, this fact is denied in the written text. At others, contradictions are
evident:
      *  “There is uncertainty about whether the prevalence of autism is increasing,” immediately followed by: “Our study is consistent with an increase in the incidence of autism in recent birth cohorts.”
      *  "For age at first parental concern, no significant temporal clustering was seen for cases of core autism and atypical autism, with the exception of a single interval within 6 months of MMR vaccine associated with a peak in reported age of parental concern at 18 months,” and “Our results do not support the hypothesis that MMR vaccination is causally related to autism."

By far, however, the Taylor study’s most serious problem was to look only at children born after 1987.  This effectively excluded all children born in 1986-87 and initially vaccinated in 1988 or later.  It also excluded all 2?5 year old children previously non- or partially immunized and who received MMR boosters in 1988 or later.  More importantly, this design flaw added all excluded children to the opposite group. Last but not least, Dr. Taylor has repeatedly refused to let anyone see his raw data, in the hopes of replicating his findings, thus becoming probably the first author in the history of the Lancet to do so.

The ‘authorities’ need to get away from rhetoric.  They must look at and commission real science to support their claims.  Until the safety of the MMR vaccine is proved conclusively, it will be wise to allow parents a choice between the single vaccines and the trivalent MMR.  All of us who have been touched by the autism epidemic appreciate the efforts put forth by CBS and 60 Minutes.  We hope that numerous and more balanced, informative programs will follow.”

Contents

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Informative New Video

The Different Shades of Autism is an informative introductory video prepared to “help medical professionals recognize the early signs of autism, so intervention can begin as soon as possible”. I watched a copy last night, and believe this hour-long video would also be useful viewing for parents in the nascent stage of dealing with an autism diagnosis as they try to learn what they are dealing with, while struggling to overcome   the instinctive denial that kicks in to buffer us against reality.  This video would also be useful for showing to relatives, esp. the ones who insist that there is no problem or, perhaps worse, insist that there is a problem but nothing can be done about it. The Different Shades of Autism  does present (perhaps with too great a reliance on the miraculous wonders of school-based intervention) a positive view of hope for improvement in the lives of children with autism via early detection and intervention that can involve parents, therapists, school, and medicine (prednisone is discussed in some detail). Prepared by parents, particularly Veronica Bird whose charitable foundation has funded not only this video but also a study of prednisone under the direction of Dr. Stephen H. Mott at Georgetown,  The Different Shades of Autism was selected by the New York  Film Festival as one of 6 finalists (out of 48 submissions) under  Health Care Professionals Education  category video (Non-Broadcast) Competition.   The Gala Awards Banquet will be held  Jan l9th - (if this video wins, I’ll let you know.)

In the meantime, while over 6,000 copies of this video have been distributed, funds are being raised to edit it down to a 15-minute version that the American Academy of Pediatrics wishes to distribute to its’ several hundred thousand members (doctors are more apt to watch a 15 minute video than find the time to view the full hour-long version).

If you wish to obtain a copy of The Different Shades of Autism to view yourself, share with family, or give to your pediatrician, contact:
 

Veronica Bird Charitable Foundation
Ahead with Autism
P.O. Box 599
Riva, Maryland  21140
410/956-5882
www.aheadwithautism.com