Friday, December 30, 2005

December Meeting Highlights

Positive reports were given for Children's Aid Society's Wagon Road Camp for summer day programs and holiday weekend sleep-away respite. AHRC's school holiday day camps also get a good review from Jill.

QSAC's Saturday Recreation program in Hollis, Queens serves kids from Queens, Brooklyn, and Manhattan and gets a good report from me. AMAC's Saturday Recreation was a disappointment to our household when they told us they could not safely manage our kids, but others have found it fine. AMAC also runs an afterschool program that actually picks up kids from a few D75 schools and busses them home later in the afternoon.

Special Needs horseback riding with Denise Colon at DreamCatchers ( therapeutic riding gets a good report, also from me, and we hear that there is a program at Jamaica Bay too. None have been there, but have heard good things. Website is

For swimming, some have had good experience with special needs instruction at Asphalt Green, and SNACK now has a swim program that is held at St. Bart's in midtown. Details at

Next month is the always useful special camp fair held by Resources for Children with Special Needs. Admission is free and you get a copy of the updated camp directory. Details follow.

Resources also has a thick catalog on afterschool and recreation programs serving a wide array of disabilities & ages. Website is


Saturday January 28, 2006
11:00AM TO 3:00PM

at the
Church of St. Paul the Apostle
405 West 59th Street

Entrance to Fair on Columbus Avenue near West 60th Street

Sunday, November 06, 2005

October Meeting Report: Turning 5

B&N at Union Square turned out to be a pretty good place to meet -- accessible to many even on this lousy wet day. The cafe did not get busy until about 11:30. So it looks like we'll be there in December and for a while to come.

Our schools conversation focused on managing the "Turning 5" process, where one leaves the Committee on Preschool Special Education system and graduates to the plain 'ol Committee on Special Education.

The Context of this Transition
The majority of school-aged special education program seats are operated by the NYC Department of Education, while most preschool seats are operated by not-for-profit organizations under contract to the NYC Department of Education. This is in some ways a subtle difference, but the switch from the DoE being only the payor, to the payor and the provider, makes a world of difference in their approach to your child as a client of the system.

For a autism spectrum child, this transition, like all transitions, will be frustrating because it means change -- except in rare instances, you will probably be saying goodbye to teachers, therapists, and other trusted professionals for reasons that are not rooted in your child's development and needs. Occasionally, you will have therapists who can and do accept reimbursement with both the CPSE and CSE. Ask your current providers if they will be able to continue with you in the school age system -- not all can but those who can are often worth trying to keep to maintain continuity for your child.

Public or Private?
This advice assumes that you plan to seek a non-public school placement for your child who is approaching school age. Some members of our group have been happy with placements in city operated programs for children on the spectrum. For kids who are lower functioning, these placements are typically District 75 segregated special education programs, usually 6:1:1 classes with children classified autistic. Higher functioning kids who have good receptive language and at least some expressive language can consider Collaborative Team Teaching (CTT) classes that have up to 10 kids with an IEP and up to 15 general eduction kids in your neighborhood school or nearby Community School District operated school. You should try to visit at least one of these programs so that you will have a point of comparison for your preferred placement. These two are not the only options within the Dept. of Education, but they are the most common I've seen.

Through this year, you will be doing one dance with the school or schools you want your child to attend, and another parallel dance with the Department of Education. In simplest terms, you want to pursuade a program that it wants to serve your child, and pursuade the DoE that it cannot properly serve your child in programs that it operates.

An alternative to this second dance, which is relevant to only some schools, is to simply place your child in the school and basically sue the school district to fund it after the fact. This is called a "Carter proceeding". This route really requires that you retain an education attorney, and your settlement with the DoE, if you prevail, is a percentage of the actual tuition, paid as much as a year after the fact. Your proceeding will be heard by a hearing officer who is like an administrative law judge, and should you pursue this you will want to build a record of your child's needs and settings or practices that have been unsuitable, ineffective, or incompetently administered. This is a stressful and contentious route, and it is more difficult to do out of the gate than after your child has been in a placement that has been a failure.

And finally, for a few schools, you can place your child in the program, pay the tuition, and forget about the school district dance. Each family that does this is a little defeat for the principle of a "free and appropriate public education" for children with disabilities, but your child is not a principle and needn't be sacrificed to one if you can afford the truly staggering retail price of a specialty private school -- because of the lower staffing ratios, think Dalton tuition + $10,000 at a minimum. Schools in these categories do not generally have scholarships. Most families who go this way eventually seek a settlement with the school district, and it is worthwhile take the time to build the record over which this negotiation will take place.

In early fall of your child's last preschool year, begin to schedule visits with candidate schools, and schedule a private psych evaluation with a developmental pediatrician. Your evaluation cannot be more than a year old at the time of your IEP meeting, but you want it in time to provide to schools so they can judge whether they match your child. December/January is about ideal for this.

Select Private and Non-Public Schools
Schools for kids on the spectrum can be usefully thought of in several categories:

• Behavior analytic/discrete trials methods (ABA): NYCA Charter School, NYCLI, Eden II, Hawthorne Country Day School Manhattan Annex, AMAC, QSAC, The McCarton School

• Developmental or Social Cognition Curriculum: Learning Spring, Aaron School, Rebecca School, PS 32 Model School, The Child School

• Learning Disabilities schools that often say they don't serve spectrum kids, but certainly have some in the school population: Parkside, Gillen Brewer, Gateway, Churchill

• Inclusion placement with supports: This can be the CTT model described above, or general education placement with related services. This can even be regular private school, with publicly funded related services or counseling.

School Visits and Interviews
Visit several schools in the category you think your child is in, plus one in the next less restrictive category for comparison. Generally, behavioral is most restrictive, developmental next, LD, then inclusion. Each school will have slight variations in their intake/application process. Fill out their forms, get them prior evaluations and progress reports from your current program, etc. If your child's reports pursuade the school that he or she may be appropriate, they will often schedule an observation or visit, and they will generally tell you that your child is "appropriate" for their program or not. This is not an acceptance, as they may have dozens of kids who are "appropriate" and it is in their interest to do so. If they have just a few spots, they are likely to take the first kids who were appropriate whose school districts call them asking for a Pupil Acceptance Letter (PAL).

Labels to know for the IEP and Placement
In addition, find out what disability classifications each school can or does serve. In preschool, your child was "a preschooler with a disability", at school age you have to pick a label, and that label does not really matter other than it has to align with the child's placement. There are thirteen of these categories under the Individuals with Disabilities Act, including: Autism, Deaf/Blind, Deafness, Emotional Disturbance, Hearing Impairment, Mental Retardation, Multiple Disabilities, Orthopedic Impairment, Other Health Impairment, Specific Learning Disability, Speech and Language Impairment, Traumatic Brain Injury & Visual Impairment.

Several of these are obviously not appropriate for autism spectrum kids, but a surprising number of them actually get used. In general, an autism classification is needed for the lowest staff ratio placements, but OHI, SLD, Speech/Language, and even ED can be used. Once you know what classifications are accepted by the programs you think are appropriate, you can steer your evaluations appropriately. At the same time, share your perceptions about programs with your evaluator to see if they share your judgments.

Footnote: A caution on the ED classification -- in New York City and perhaps elsewhere, the ED classification is often given to kids who have mental health rather than developmental issues, or who exhibit aggression that they may have learned at home or in the community. Unless an ED program is exceptionally good, it will be a ideal place for an autistic child to be victimized.

Dept. of Education's Turning 5 Process
In late fall, the Department of Education will schedule "turning 5" open houses in each borough explaining their procedures and timeline. Attend one of these meetings or get a report about what was said. You may find out who the "turning 5" coordinator in your DoE region is, and this will be an important contact.

Generally, the turning 5 specialist from the region will contact you or your child's school to start the transition, usually starting with a general survey, and perhaps scheduling a visit by an education evaluator to your child's program. Respond to them promptly and completely.

You may be invited to bring your child to the Regional office for an appointment with the school psychologist or psychiatrist. This is often a frustrating waste of time, but it must be done. It is rare that this person and setting elicit a good performance from your child, since there will likely be no attractive materials or activities, and the professional will talk from behind their desk. In some sense, the worse your child performs on this occasion, the better for your non-public school argument. At about the same time, your child's related service providers will be asked to prepare progress reports or evaluations for the IEP meeting, or rarely, you may be asked to bring your child to evaluators for each type of related service (PT, OT, Speech).

Transition and Related Services
Related services such as speech, occupational, and physical therapy are now provided in 30 minute increments rather than 60. Often, this means the same number of units of a therapy are approved, which is now half as much. If a particular type of therapy is essential for your child, make sure your evaluations capture this. Obviously, a trip across town for a 30 minute session with a therapist is less attractive to you and the therapist, and your child will not suddenly get twice as much benefit from a session. In the school age system, the assumption is no travel time because most related services will be delivered in school. At this stage, you will only be discussing the number of units of each type of service. Once you have a settled placement, you can begin worrying about the actual provision of the services, which vary greatly among schools.

Waiting, Waiting, & Wondering
In February and March, your parent peers who are applying to private schools will be hearing about acceptances and rejections. Your child's IEP meeting will likely not take place until April at the earliest, and perhaps as late as mid June. In April, your neighborhood school will probably announce Kindergarten signup day. If your child may be appropriate for CTT Kindergarten, go to this sign up. If not, avoid this neighborhood ritual if at all possible, as it is likely to make you unaccountably sad or angry.

Spring of this year will therefore be an incredibly tense time for you -- find a designated person to gripe to, step up your anxiety medication, or whatever else is necessary. Try hard to not take this out on the school or school district staff you must deal with, as you do need these people to deal fairly with your child.

The IEP Meeting
Because there is a shortfall of seats compared to the number of kids seeking them in all the categories discussed above, you want your IEP meeting earlier rather than later. Complete all requested paperwork and cultivate the personnel so that you can ask for an earlier date.

Unlike the preschool system, where your meetings with a CPSE administrator were attended by you, a school or program representative, and perhaps a "parent member", school age IEP meetings have a committee that must include a social worker, general education teacher, education evaluator, school psychologist, & parent member. You may be literally outnumbered, and It is easy to feel outgunned in this context, so you will want to bring your own team. It's obviously good for both parents to come, along with staff from your child's preschool program and whatever kind of parent advocate you might be using.

Your objective in the IEP meeting is to get the committee's approval of "non-public school" placement for your child. In DoE language, you want a P-1 letter. If you have already visited a D75 or CTT class, you can more easily argue against these placements in this meeting. Committees will usually say that they can't talk about placement, just program type or characteristics such as ratio or curriculum, so position your arguments accordingly on class size and program features. Your second goal is get the disability classification that aligns with the program you want. Bring your evaluations, which members of the committee may or may not have read or even received. Bring a large photo of your child, as the educational evaluator who probably did an observation, and the school psychologist are likely the only ones who have even a face to put with your child's name.

IEP Committees have been known to issue "NPS" recommendations (P-1 letters), and if they do you want to be on the phone with your desired program right away to get their Pupil Acceptance Letter. Let their program administrator know the date and time of your IEP meeting so they can be available if you get this outcome.

If Your Request is Not Approved
Often, the committee will not agree or will say they are not authorized to offer a P-1 letter, and will refer you for placement in a DoE program. Now you need to do two things: request an impartial hearing, and visit the recommended program. Find out who the Placement Officer is for your region, and follow up to see when a placement recommendation will be issued. When it is, visit the school and record the ways the program will not meet your child's needs. Take care not to antagonize the recommended program's staff, as you may end up there for a time.

If you are going to request an impartial hearing, sign only the attendance sheet for the IEP meeting and follow up with a letter requesting an impartial hearing addressed to the CSE Chair for your region. What to do from here is really the subject of another posting, and as I've never traveled that territory I'll leave it to another source.

Representation and Resources
If you are in the impartial hearing trajectory, you will want to retain an education advocate or attorney. The most well known of these attorneys in the NY area is Gary Mayerson, whose book How to Compromise with Your School District without Compromising Your Child contains excellent strategic advice and will probably save valuable time no matter what advocate you select. The following are the most well known education attorneys in NYC, with contact info found on

Gary Mayerson & Associates
330 West 38th Street #600
New York, New York 10018

Regina Skyer
Skyer & Most Attorneys
276 5th Avenue Rm 306
New York, NY 10001
(212) 532-9736

Neal Rosenberg
Rosenberg Neal Attorney
9 Murray Street, Front
New York, NY 10007
(212) 732-9450

Michele Kule-Korgood
Kule-Korgood Michele Law Offices Of
9820 Metropolitan Avenue # 2
Forest Hills, NY 11375
(718) 261-0181

If you are unable to retain private counsel, you can get some assistance and referral to not-for-profit advocates from Advocates for Children of New York at

An excellent general & nationwide site on special education law issues is

Tuesday, November 01, 2005

Grace Foundation 3rd Annual Conference

NOVEMBER 18th and 19th
Hilton Garden Inn, Staten Island for printable registration form

We are pleased to announce that the GRACE Foundation's Third Annual Conference "Living, Understanding and Learning about Autism" has secured our guest speakers, Jerry Newport (an Advocate with Asperger's Sydrome) and also the Author of "Your Life is Not a Label"; and Eustacia Cutler (mother of Temple Grandin,PhD) author of "A Thorn in My Pocket".

Other speakers include Barbara Bloomfield, M.A.,CCC-SLP, presenting on Visual Supports and Structured Teaching Strategies to Assist with Core Challenges of Autism Spectrum Disorders.
Additional topics to be discussed include: Relationship Development Intervention (RDI); Sleeping Issues; Assessments; Language: Siblings: Motivational Methods; Sensory Integration; and Behaviors.
The combination of excellent speakers and interesting topics will demonstrate this Conference to be very interesting. SAVE the Dates November 18th and 19th.
For further information, call the GRACE office (718) 605-7500.

Tuesday, October 04, 2005

Spectrum Artists Symposium at Cooper Union

Pure Visionaries: Artists on the Spectrum
Exhibition and symposium

Pure Visionaries is a celebration of the cultural achievements of people on the autism spectrum. This historic event will feature a symposium along with an internationally curated exhibition of artwork created by emerging and established contemporary artists who have autism. The symposium will feature several speakers on the subject of autism, including scientist and writer Dr. Temple Grandin. Temple’s mother Eustacia Cutler will discuss her long awaited memoir Thorn in My Pocket. In addition, Clara Park the acclaimed writer of Exiting Nirvana: A Daughters Life with Autism, and internationally renowned artist Jessica Park will be speaking at the symposium.

For more information and registration please contact Pamala Rogers at 212-366-4263 or e-mail:

Thursday, November 3, 6–8pm
The Great Hall Gallery
7 East 7th Street at Third Avenue

Exhibition: Free
Thursday, November 3–Wednesday, November 23
The Great Hall Gallery
7 East 7th Street at Third Avenue
Hours: Monday–Friday, 11am–7pm, Saturday, 11am–5pm, closed Sunday

Friday, November 4, 9am–3:30pm
The Great Hall
7 East 7th Street at Third Avenue

Wednesday, September 14, 2005

September Meeting Report

Our longtime meeting place, Tribakery, is closed for renovations for several months and may not be suitable for us when it re-opens. So September's meeting brought 6 of us to Lynn's house around the corner. Welcome to Etta, who came for the first time.

We need to find a new meeting location at least until spring, and possibly beyond. Proximity to lots of different transit options, quiet enough for conversation, and flexibility for seating a group that fluctuates between 5 and 20 people are our criteria. Please contact Lynn with nominations.

Many of us have started new schools this month, and we talked quite a bit about the transitions to these new arrangements, including lots about the often anxious topic of busing, plus respite, afterschool, camps and school holiday programs. The consensus of those present, and of all who replied via e-mail, was to extend an invitation to Dr. Hamerman of the Lamm Institute to address us, and that will tentatively be in November.

There is a new school opening fall 2006, with the same Executive Director as the Aaron School, Michael Koffler. It will offer a Greenspan/DIR approach, and Stanley Greenspan is on the advisory board. If your spectrum kid does not require behavioral instruction, this may be worth looking into. Applications are being accepted starting Fall 2005 (now), request a brochure or application at The planned school size is an impressive 200, serving kids 4 to 14. No indication whether it is a "state approved non-public", charter, or "Carter proceeding" school, but probably safe to assume it is similar to Aaron.

Our topic for October is Schools. Please come prepared to describe your school, others you have visited, etc.

Hurricane Help: Major autism organizations are delivering ASD family focused relief through the site For a comprehensive list of disability and prematurity targeted gulf coast contacts, see

When you can think for a moment about the very real possibility of a hurricane in New York City, check your home's evacuation zone at This site lets you see the areas predicted to be affected by storm surge for varying classes of storms, plus details on evacuation routes.

Beyond that, there's the issue of what else needs to be in the ditch bag of a family with an ASD child. This would include prescriptions, copies of the IEP and evaluations, GFCF snacks, and more.

In spite of the Bush Administration's overall hostility to the ADA and IDEA, the Department of Homeland Security has a reasonable page on Emergency Preparedness and Disabilities at It covers practical preparedness for families with a disabled member, plus suggestions on dealing with the social and emotional fallout from disaster with developmentally disabled kids.

Thursday, May 19, 2005

NYC4A Open House Report

I promised an account of the open house for the NYCA charter school, and here it is. I did not ask staff from the charter school to fact check this report, so any errors are my own.

There were about fifty people at Tuesday's open house for the new autism charter school, so my plan to nag about outreach seemed less important and I took a pass on being argumentative. If half that many came in the evening, I think there will be a healthy pool of applications.

Their presentation involved a discussion of how the NYCACS came into being, by Ilene Lanier, who is the board president, followed by a discussion of educational methods and tactics by Caroline Ryan, the education director, who has/is a BCBA. The executive director, who is not an educator but rather an administrator and probably fundraiser (at least as far as I could tell) spoke about the admissions process. I did not catch his name.

The program will be straight ABA -- not verbal behavior, social stories, or other common methods. Related services will not be provided in school, and there will not be a sensory gym, OT room, or pull-out speech. Speech and OT activities may be part of a student's discrete trials program, or group activities. Families may seek RSA's for such services and obtain them outside school hours. School support for such RSA's with the CSE was somewhat vague though -- they will not oppose them, but seeking them will be based on speech, OT, or PT evals, and the school will have none of those types of professionals on staff. Any home ABA programmers that families use are welcome to attend team meetings for coordination of home and school programs.

Ultimately, they hope to run a school that will serve ages 5-21. But charters are issued for a period of 5 years, and in each classroom, at least in special education, it is possible to have an age range of up to 4 years. Thus the age range at for current admissions is 5-9 and the age served under the charter is 5-14 (or 9 + 5). In five years when the charter is up for renewal they will be seeking to serve 5-19, etc.

They discussed 4 levels on which there will be accountability in the program: their internal standards for staff performance, family feedback, independent consultation, and NY City and State government regulations. Students who are appropriate for the program will be eligible for the alternate assessment rather than standardized testing. What the criteria will be for charter renewal remained a little unclear to me, but I suspect it will involve showing student progress within the alternate assessment framework.

This year they will open school year with 4 students, and add eight more, one about every 5 weeks throughout the year. In year two they will add eight more for a total of 20, and in year 3 eight more for a total of 28. Not clear whether the year 2 and 3 admissions will be for September or rolling.

Location will be in a public elementary school somewhere in Manhattan. If anybody knows a public elementary school with room to spare this year and more space to give up in year 2 and 3, I'd like to hear about it. In any case, they can or will not identify the host school at this time.

Student selection for this year will be from the applications received by June 1, and qualifying applications require a medical diagnosis of autism or PDD-NOS, and an IEP with a placement or recommendation for segregated setting. A student who is now in an inclusion setting or has been recommended for one is not likely to be a candidate for this program. There will be sibling preference, as this is required for all charter schools. How exactly that will fit in the lottery framework was not detailed.

The ratings on the student profile will be used to rate qualified applicants as 1 (severe), 2 (severe - moderate) and 3 (moderate). A student with an overall rating of 4 is probably not an appropriate candidate for the program. That student profile will not be used for any instructional purposes -- it is meant only to divide the applicant pool into three subgroups so that the student body will have a range of functional levels and at least some peers for each student. So the odds of being selected will vary depending on the number of applicants in each sub-pool.

Precisely how the first 4 seats will be distributed among the three sub-pools was not clear to me, but a total of 4 will be chosen from each of the three sub-pools, and every qualified applicant (see criteria above) will get a notification of their lottery number by mail, sometime after July 1. Those with numbers 5 to 12 will also get an estimated date of admission. Those above the first 12 will be on a waiting list through the year. All those on the waiting list will need to re-apply for the following year.

Oddly, the application documents don't seem to be downloadable from the website anymore. Not cool. If you still need one, call them at 212-759-3775. Applications for the school lottery are currently being accepted and must be received by Wednesday, June 1, 2005 at the office of The New York Center for Autism Charter School, 214 E. 52nd Street, Third Floor, New York, New York 10022-6207.

Website is

Tuesday, May 10, 2005

Environment & Disability Nexus

Keep an eye out for news coverage of this event. This is a conversation that is long overdue, and the proper basis for what I think might be some powerful alliances between environmentalists and disability advocates. One nitpick is that I'd like to see a greater emphasis on the iatrogenic (meaning introduced by medical care) component of environmental exposures, of which thimerosal is the biggest.

But I applaud this effort and am looking forward to more in the same vein.

Press release of Environmental Media Services follows
The Relationship Between Chemical Exposures and Incidence
Of Learning and Other Developmental Disabilities

Sponsored by
Senators Lautenberg, Clinton, DeWine, Jeffords, Kennedy, Kerry & Snowe

Groups Call for a Fully Funded National Children’s Study and
Chemical Regulation Policies That Better Protect Children

Washington, DC – Learning and developmental disabilities are estimated to affect one in six children in the U.S. under the age of 18, and scientists report that the rates appear to be increasing. The National Academies of Science estimates that 25 percent of developmental and neurological deficits in children are due to the interplay between environmental and genetic factors, and research indicates that the developing fetus and children are particularly vulnerable to chemical exposures. Of the more than 80,000 chemicals currently registered in the marketplace, only 12 neurotoxicants have been thoroughly studied. Exposure to these chemicals in the womb and throughout childhood can damage the developing brain and contribute to learning and developmental disabilities.

The health impacts of these exposures also have economic costs. A recent study conducted by the Mt.Sinai School of Medicine estimates that for mercury exposure alone, the cost to society is about $8.7 billion annually. These societal costs include significant expenditures for special education. In 1999-2000, the United States spent $77 billion for special education services to students with disabilities, which is almost a quarter of all spending on elementary and secondary school education that year. According to the U.S. Department of Education, special education spending continues to increase every year.

Experts at the briefing will address subjects including: the connection between chemical exposure and developmental disabilities; why the developmental disabilities community is concerned about chemical exposures; autism rates and the personal experience of mother of an autistic child; the promise of the National Children’s Study; and ways we make chemicals child-safe.

Bruce Lanphear, MD, MPH – Cincinnati Children’s Hospital Medical Center

Joe Meadours, Alabama Mental Health and Mental Retardation Department

Laura Hewitson, PhD – University of Pittsburgh School of Medicine and autism researcher/mother of an autistic child

Leonardo Trasande, MD, MPP – Mt. Sinai School of Medicine

Lynn Goldman, MD, MPH – Bloomberg School of Public Health, Johns Hopkins University

Congressional briefing on the latest scientific understanding of the relationship between chemical exposures, and learning and other developmental disabilities.

Tuesday, May 10, 2005, 10:00- 11:30am.
406 Dirksen Senate Office Building

Sponsored by the American Association on Mental Retardation, Learning Disabilities Association of America’s Healthy Children Project, and the Collaborative on Health and the Environment’s Learning and Developmental Disabilities Initiative.

Saturday, May 07, 2005

M.I.N.D. study on biomarkers

Srong evidence of alterations in blood samples of children with autism
06 May 2005   

Scientists report strong evidence of immune and protein alterations in blood samples of children with autism, raising hope for an early diagnostic blood test.

Offering a new and exciting direction in the effort to develop a diagnostic test for autism in infancy, scientists from the UC Davis M.I.N.D. Institute presented new evidence today indicating that components of the immune system and proteins and metabolites found in the blood of children with autism differ substantially from those found in typically developing children.

Investigators at the Institute believe the discovery, announced today at the 4th International Meeting for Autism Research (IMFAR) in Boston, could be a major step toward developing a routine blood test that would allow autism to be detected in newborns and treatment or even prevention to be initiated early in life.

Over the last two decades parents, educators, scientists and pediatricians have been alarmed by a dramatic and baffling rise in the prevalence of autism, which now affects as many as 1 in every 166 children. But diagnosing autism, a brain disorder that leaves children in apparent isolation from their families and communities, is currently accomplished through a series of behavioral observations that are not reliable until a child is between 2 and 3-years-old.

"Finding a sensitive and accurate biological marker for autism that can be revealed by a simple blood test would have enormous implications for diagnosing, treating and understanding more about the underlying causes of autism," said David G. Amaral, research director at the UC Davis M.I.N.D. Institute and one of the co-authors of the paper presented at IMFAR. "Not being able to detect autism until a child is close to 3-years-old eliminates a valuable window of treatment opportunity during the first few years of life when the brain is undergoing tremendous development."

Amaral along with pediatric neuropsychologist Blythe Corbett and other M.I.N.D. Institute colleagues took blood samples from 70 children with autism who were between 4 and 6 years old and from 35 children of the same age who didn't have the disorder. The samples were then analyzed by a biotech company, SurroMed, LLC, Menlo Park, Calif., which has developed technology that can identify differences in the number and types of immune cells, proteins, peptides and metabolites in small amounts of blood.

The study has generated an enormous amount of data and M.I.N.D. Institute researchers say it will take months before all of the information has been fully evaluated. But initial findings clearly demonstrate differences in the immune system, as well as proteins and other metabolites in children with autism:

-- The antibody producing B cells are increased by 20 percent in the autism group

-- Natural killer cells are increased by 40 percent

-- More than 100 proteins demonstrated significant differential expression between the autism and typically developing groups

-- Other small molecules (metabolites) also show many differences

"This is an important pilot experiment, a proof of principle," said Amaral. "From these results we think it is highly likely that there are differences we can detect in blood samples that will be predictive of the disorder, though we are still some years away from having an actual diagnostic blood test for autism. Scientists have long suspected there were distinct biological components to autism but the technology needed to reveal them has only recently become available."

Future research studies need to be done to confirm the findings in a larger group and with younger children. For example, researchers might take blood samples from newborns and then see if the results predicting autism are later confirmed by a behavioral diagnosis. Other studies would also use bioinformatics approaches to narrow down the number of proteins or metabolites that would need to be assayed to show the strongest link to autism.

"Discovering an early diagnostic test is an important focus of research," said Amaral. "There is a growing view among experts that not all children with autism are 'doomed to autism' at birth. It may be that some children have a vulnerability-such as a genetic abnormality-and that something they encounter after being born, perhaps in their environment, triggers the disorder. Studying the biological signs of autism could lead to new ways to prevent the disorder from ever occurring. And even if it can't be prevented, intervening early in life-ideally shortly after birth-could greatly improve the lifetime outlook for children with autism, particularly those who now respond poorly to therapy initiated when they are three or older."

The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into the causes and treatments of autism, bringing together parents, scientists, clinicians and educators. For further information, go to

Tuesday, April 05, 2005

DAN Conference

The DAN (Defeat Autism Now) conference is being held in Boston this year on April 14-17. For more information:

Monday, February 21, 2005

February 05: Safety

Well, the NYPD officer did not make an appearance at our February meeting, but we had a very rewarding meeting all the same.

What the officer was prepared to say is that you should have a recent photo and descriptive information about any child who is prone to escape (in my world this means any child at all) on hand, and you can even deliver it to the community affairs unit of your local police precinct. There is no city-wide registry for at-risk or disabled persons. Although that would give me great peace of mind, I can readily see the reasons why such a thing does not exist.

He also said that an identification tag such as medic-alert is a good idea for any person who cannot speak or otherwise advise public safety officers of their condition and home address.

The orginal and best known provider of these bracelets is, but this service involves both the purchase of a bracelet and an annual subscription to an information service that can provide medical history to emergency medical providers. For those among us whose kids have seizure disorders or other major medical complications, this may be a value, but for me, the bracelet alone will be quite sufficient. To order just a bracelet, google medical alert jewelery and choose among the many providers. A basic kids bracelet with engraving seems to run about $25. Our bracelets will be engraved with the child's name, the condition "autistic, nonverbal", my cell phone number and maybe our home address.

I spotted a fairly low-technology "child distance monitor" at my local pharmacy, which might be helpful for outings. The child and their adult each wear one piece of the device, and the alarm will sound if they are more than 30 feet apart. Details at Online price is $39.99, retail store price $49.99

Finally, a more elaborate tracking device is available from Ion-Kids. This one has a sturdy wristband that can be worn by up to four "trackees" and a base unit that will go off when the bands are beyond a set boundary. And this base unit can tell you the distance and direction of the tracked bracelet, so it is actually useful for finding the lost kid. The wristbands are not entirely waterproof, but they do seem durable and are described as "tamper resistant". Prices start at $150.

Our next meeting is March 9th. Topic is child care -- issues with in-home care providers, respite providers, and even drop-off care if that is an option for any kids.

April meeting is on the 13th and the topic will be IEP meeting preparation.

One of the many things we talked about is how to get the separate MMR components. And I just ran across that information on another list.

"Here are Merck product numbers for monovalent vaccinations for
measles, mumps, and rubella, to give to your doctor if you will want
to separate these vax.

Measles: # NDC00064709-00, single dose
Mumps: #NDC00064753-00, single dose
Rubella (called Meruvac II): #NDC00064747-00, single dose

Your doctor must call 1-800-609-4618 or 1-800-672-6372. These are
doctor-only lines so the doctor must call. Merck sells monovalent vax
in packs of 10 and the cost is $142 for a ten pack.

Hopewell Pharmacy in New Jersey stocks the single dose M, M, R
vaccines, 800-792-6670."

Thursday, January 20, 2005

Evidence of Harm book preview and the NAA NY chapter

A new book is coming out soon by David Kirby titled
"Evidence of Harm" about the possibility that thimerosal (mercury) added to vaccines has contributed to the autism epidemic and other disorders. He gave a powerful presentation last week, and might do a repeat sometime in February. It was sponsored by the National Austism Association New York Metro Chapter. They hope to be holding monthly lectures, including one coming up on Jan. 29th by the Geiers. There is more information on the NAA NY chapter website. The National Autism Association's goals are "to advocate, educate and empower" and we are fortunate to have an active chapter in NY. Also go to this page on their site about Harvey Weisenberg's bill to get mercury out of vaccines in New York and click on legislative alert to help support it.

Update: David Kirby repeat presentation Thursday, February 17, 2005; 7:00-9:00 PM at Lifespire – Third Floor Conference Room in the Empire State Building. RSVP TO: