2nd Annual Autism/Asperger's Conference in New York City - Oct. 3-4, 2009

James Adams, Nancy O'Hara, and Sabeeha Rehman

They came from all boroughs of New York City, from Upstate New York and Downstate New York, from New Jersey, Connecticut and New Hampshire, from Louisiana and Colorado, and from Montreal. Exhibit space was sold out; an art exhibit displayed the work of artists on the spectrum; gift-bags with food samples for all, colorful booths including an indoor gym set, and parents, grandparents, teachers, therapists, and doctors, settled in for the two-day conference to listen to an array of superb speakers. This was Autism/Asperger’s conference 2009.

Some memorable quotes and take-home messages:

“Oreo!” The baby points and crows. He can’t talk yet, but already he knows what an Oreo is…and he knows that if he looks at his mother and points, she’ll give him one. This amazing process of ‘knowing’ is from his birth. An autistic child is missing this innate gift. He might know the name for an Oreo, but not what it’s for, and not how to ask for it”. Eustacia Cutler – 83 year-old mother of 62 year old Temple Grandin

“Early Intervention assessment should not just rely on data, but take into consideration informed clinical opinion i.e parent’s report, and the natural context.” Steven Blaustein, Ph.D., CCC-SLP

“To maximize your insurance reimbursement, demonstrate medical necessity and the diagnosis code to support it, and get the physician to sign-off on it.” Christina Peck, CPC

“Yoga has the potential to significantly improve fine & gross motor skills, muscular fitness, muscular strength, and balance.” Deborah Gruber, M.Ed., Ph.D.

“Our children should be on probiotics – the good germs; Our children are not getting enough Vitamin D – they need 20 minutes of sun exposure daily; first build up their mineral level, then get the lead out; rotate foods each week; give them protein for breakfast; avoid MSG – an excitotoxin; and if you first treat their medical problems, the neurologic problems will improve.” Nancy O’Hara, M.D.

“Vitamin/mineral supplement is well-absorbed, and improves nutritional status, porphyrins, possibly neurotransmitters, and possibly autism symptoms.” James Adams, Ph.D.

“There is no perception without attention. We see with our eyes and perceive with our brain. Our eyes view the landscape. Our right brain maps the geography. Our left brain interprets the information”. Melvin Kaplin, O.D.

“We do what we do because we want something, or we want to avoid something…child doesn’t want to stay in school – child cries – child is sent home. Identify what he is trying to avoid. Change the antecedent or the consequence, or both, and you modify behavior.” Doreen Granpeesheh, Ph.D., BCBA

“Top 10 Must Buy Organic Foods: Peaches, apples, pear, winter squash, green bean, grapes, strawberries, raspberries, spinach, and potatoes”. Geri Brewster, RD, MPH, CDN

“Family Services offered by Autism Speaks: Online Resource Guide, 100 Day Kit, Resource Library, School Community Tool Kit, Autism Safety Project, Family Services Community Grants, Autism Response Team Coordinators, Family Legal Appeal Project…” Peter Bell.

“Do not delay making your Will and appointing a guardian for your children. You must review your will periodically, as circumstances may change.” Stuart Flaum

And the most memorable moment, as a young lady sitting in the front seat, addressed the writer’s panel:
“I had autism…I have recovered…and I don’t want ever to go back again, it was too painful.” Liz

Sabeeha Rehman

Report on Age of Autism by Kim Mack Rosenberg

Photo Album

Presentation Handouts

Drive Brain Development: Closing the GAP Between Your Child’s Chronological Age and Their Developmental Age

Sujata Setya with Dr. Gruttadauria

On September 23, 2009, Michael A. Gruttadauria, CD, DACAN, spoke about Neuro-Enhancement Therapy and now to enhance brain function in your child while you are doing your biomedical protocol.

Dr. Gruttadauria explained that PDD is a broad diagnosis covering a spectrum of childhood neurological disorders. What it means in actuality is a delay in the brain's developmental process. In essence, for every 24 hour period that goes by, your child's brain only develops for 18 hours. After 1 year, there may not be a visible difference between your child and a neurotypical one, but after 2 and 3 years, you see the GAP. The GAP is the difference between the actual or chronological age of your child and their developmental age; meaning the age that best describes where they are with language, socialization, and overall development. Unfortunately, this GAP widens every year as our expectations of children grow exponentially. Sensory-Motor Integration drives brain development in neonates and toddlers, so can we use it therapeutically. The vast majority of doctors that treat kids on the spectrum address the biomedical issues, but no one is addressing the GAP.

Dr. Gruttadauria, is the founder and clinical director of The Long Island Spectrum Center in Plainview, New York, and one of only a few hundred doctors worldwide to achieve Diplomate status in Chiropractic Neurology. Five and a half years ago, Dr. Gruttadauria's 18-month-old daughter was diagnosed with PDD-NOS. It was at that point that he began a personal and professional mission to help children with neurodevelopmental disorders. In 2006, Dr. Gruttadauria created a research-based treatment program called Neuro-Enhancement Therapy (NET). NET combines a functional neurological and bio-medical examination with hemispheric-based sensory stimulation, multi-sensory integration, IT-based cognitive stimulation and bionutritional modification. In September 2007, Dr. Gruttadauria's daughter began kindergarten without any special education and without a diagnosis! Dr. Gruttadauria was recently awarded the Caring Heart for Autism Award.

Dr. Gruttadauria’s contact information:
(516) 470-9525
(516) 470-9525
http://www.lispectrum.com/

NAA NYM Rallies to Oppose Forced Vaccinations - Sept. 29, 2009

One Voice
“Stop the Shots!”
“Stop the Shots!”
“Stop the Shots!”
The crowd chanted, making their voices heard, raising their banners.
At the steps of the East Capitol, they gathered – parents, families affected by autism, advocates, lawyers, doctors, nurses, therapists, scientists, leaders, followers...
They came - to the steps of the East Capitol – from Upstate New York, from Downstate New York, from New Jersey, from North Carolina, from where they came, it didn’t matter.
They spoke with one voice, rallying to the cause of Freedom of Choice.
Freedom from forced vaccinations.
Freedom of informed consent.
Freedom to choose what is injected in your bodies.

The Rallying Point
This historic gathering of over 700 healthcare workers, advocates, and families affected by autism spectrum disorders was sparked by an unprecedented regulation promulgated by Health Commissioner Daines to invoke the Emergency Preparation Act 2009. This act requires healthcare workers and pregnant women to be vaccinated with the seasonal flu vaccine and the H1N1 vaccine by November 30, or risk losing their jobs. Under this regulation, there is limited to no recourse for vaccine injuries or death sustained as a result of these mandated vaccines.

Forced vaccination!
Risk losing their jobs!
Is that constitutional?

That was the rallying point.
And it was awesome!
Massive turnout. Over 700 people crowded on the steps of the Capitol and the plaza, raising their placards and posters, waving stars and stripes, handing out posters, signing the petition, donating to the legal defense fund, and chanting: “Give me liberty!”
And waiving signs:
“Freedom of Choice should be mandatory”
“My Body, My Choice”
“Got Consent?”
And the sun shone on them.

The media lined up the circle, videos rolling, cameras clicking.

They Speak for the People
The line-up of speakers was remarkable and energizing. Kevin McCashion, President of We The People, Albany Chapter, roused the crowd with his passionate appeal for freedom. Doctors, nurses, and therapists expressed their outrage at the government’s decision to deprive individuals of their right to informed consent. Scientists challenged the safety, efficacy, and lack of sound research to support this decision. Lawyers challenged the constitutionality of forced vaccination. And advocates appealed to the crowd to stand up for their rights, and to fight for their rights.

People’s Voices
Today it is the doctors, the nurses; tomorrow it will be the school teachers…That is medical genocide… we are not living in a totalitarian nation- yet. Gary Null

I won’t tell you what to do, you don’t tell me what to do. Louise Habakus

Promote a goal of healthcare that promotes health, and not public sickness. Mary Coyle

The answer to 1984 is 1776. We are endowed by our creator and not the government. Kevin McCashion

It is like selecting one religion for us. Vaccine is not the only option..Seasonal flu is not an emergency. Alan Philips, JD

How to avoid the flu? Wash your hands. Judy McQueen, RN

Just because the FDA approved it, doesn’t mean it is safe and viable. Deb Gerhardt, RN

Stand up for your rights…contact your legislators, work with the Autism Action Network and National Autism Association’s New York chapter…stay out of my body, stay out of my kid’s body. John Gilmore

Face-to-Face
Gary Null, PhD, Ralph Fucetola, JD, John Gilmore (activist), Michael Schachter, MD and Heather Walker (Healthcare student and activist) met with the Department of Health officials, and Gary Null reported back on the outcome, at the rally. A copy of the “letter petition” was hand-delivered to the Secretary Deputy Saunders for Governor Paterson.

We have only just begun
A remarkable start to a long journey. It won’t be easy, but together we can overturn this and make history, or rather, preserve our history of freedom.
Let’s make it happen!

This rally was organized by Heather Walker, activist and healthcare student, We the People, Albany chapter organization, with help from the Autism Action Network, Life Health Choices, and many New York state nurses.

Sabeeha Rehman


See Photo Album.

How To Keep Your Marriage Strong While Raising A Child With Special Needs

We gathered on September 17 for the Parent Network Exchange Meeting on"How to keep your marriage strong while raising a child with special needs". The speakers, Ethan Schutz and Lorin Gold, are both social psychologists who also have a child with special needs. Lorin asked us to try to encourage people to attend as couples in order to get the most out of the workshop. So it was nice to see that 80% of the participants did come with their significant other.


At the beginning, Lorin and Ethan had us go around the room and tell a little bit about ourselves, such as how old our child is and what we were hoping to get out of the workshop.


Next they had us do an interactive exercises on communication. We had to pick a partner, face them and pretend to speak to them about problems in our marriage. In turn, the pretend partner ignored us or was defensive in response. We would switch places, so we got to feel what both roles were like. Lastly, we repeated the exercise while really listening and being sensitive to our partner. This was very helpful to most people to see that we tend to get into patterns in how we communicate that are not helpful to the situation. And we do this without even thinking. Many people found that they had the same fight over and over, since they just replied the same way they always do without really listening to their partner. The exercises were definitely an eye opening experience.


Ethan and Lorin also spent a great deal of time showing us the different types of communicating personalities and how some can sabotage this very important tool in a relationship. We learned that communication is really important and keeping an open mind to each situation is vital. Otherwise we fall back into our old patterns, which can be unhelpful and even detrimental to solving on-going issues as well as everyday problems.


Some participants did express an interest in going into specific materialises. They wanted to hear other couples on-going issues. Ethan and Lorin had already spent a great deal of time getting information that would normally be taught over days to fit into our two hour block of time. So we decided that we would create a separate event for the participants where they could just talk about common marital issues that couples raising a child with special needs face. We are hoping to plan this event for November.


So overall I think many of us found the workshop very helpful in highlighting where we could use improvement in how we engage in our relationship. For some of us it has to do with not listening, blaming,being defensive or falling into bad habits. I think we all left with a renewed sense of approach to our relationship as well as some very good new tools to implement.


Dara Berger

Grandparent Support Group at the JCC

This support group is designed to help grandparents deal constructively with the challenges that face their families when a grandchild has special needs. Share with other grandparents the range of feelings and stressors that make up this unexpected journey.

Facilitated by Hannah Cohen, life skills coach working with young adults and families.

9 Wednesdays: Sept 16 & 30, Oct 14 & 28, Nov 11 & 25, Dec 9, Jan 6 & 20

7-8:30pm $135/$180

The Jewish Community Center in Manhattan
334 Amsterdam Ave. @ 76th St.
New York, NY 10023

To register or for additional information call Hannah Cohen at 646.505.5708

or visit www. jccmanhattan.org/specialneeds

Rethink Autism's Web-Based Program -- Rethinking ABA

On July 14, 2009, Jamie Pagliaro, the Executive Vice President of the Rethink Autism (www.rethinkautism.com) presented his company’s innovative new web-based educational program for children and young adults on the autism spectrum to a group of parents and professionals at our monthly Parent Network Exchange Meeting.

Rethink Autism’s program offers Applied Behavior Analysis-based teaching modules to parents, caregivers, and professionals wherever they may be located (and also licenses the program to schools and other providers with more than 3 children). For parents who are located in areas with few, if any, service providers, or who simply -- for whatever reason -- cannot get the ABA hours their child needs, this site offers an alternative that makes ABA available to virtually anyone.

The site is easy to use so that subscribers can log on and jump right in (training modules are available for those who need or want help getting started). Subscribers can set up password-protected access for themselves as well as others who work with the child. Subscription details and pricing, along with sample videos, are on the website. Once registered, you complete an assessment of your child, developed by Rethink Autism’s team of professionals. Based on that assessment, the site presents a recommended curriculum and sequence of teaching modules. There is flexibility to adapt the curriculum to your child’s changing needs -- for example, to add modules for additional skills you want to target or to delete modules of goals you have already met (or, if you use a different assessment tool from the on-line assessment, you can manage your curriculum by matching modules to that assessment). As new video modules are added to the site, they will appear in your curriculum if they match your child’s assessment profile.

Since the program is web-based, there is no limit on how often you can use the videos. Videos are not meant to be shown to the child being taught, but are, rather, a tool to teach the subscriber how to teach the child. The lessons are broken down into easy to understand segments and feature actual children on the spectrum being taught. Each module also provides helpful hints and strategies to help individualize the lesson.

Mr. Pagliaro showed our eager group a several sample videos, including videos of peer imitation, using assistive technology to communicate, how to complete a chore chart, and how to help others. The company already has added over 400 video lessons on a wide range of skills, including everything from pre-academic/academic skills to social interaction, to skills of daily living. New videos will frequently be added, based on feedback from users and the company’s professional advisory board.

Each lesson also includes a printable program plan and an on-line assessment tool and tracking mechanism. The program offers additional user-friendly features to help incorporate professionals or others working with your child and to create a comprehensive program.

Rethink Autism recommends that parents work with an ABA professional if one is available but the site is also a great resource for parents who may not have a trained professional in their area or may have limited access to professional services. Subscribers to the service can choose to add access to a Rethink Autism professional for questions, but this feature is not meant to replace professional guidance from someone who knows your child.

NAA - NY Metro is pleased to announce that Rethink Autism is offering our members and readers a 20% discount for the first month to try the program. Simply enter the discount code RA2009NAA when you subscribe. This offer expires on August 31, 2009.

DIR/Floortime has been one of the most effective interventions for my son

Gil Tippy with Susan Roberts and Sujata Setya

Dr. Gil Tippy, the Clinical Director of the Rebecca School, spoke to our group on June 16^th. He did a fantastic job of explaining DIR/Floortime. He was witty and persuasive. He talked about his journey from ABA to DIR, which was not dissimilar to mine. He showed us videos of interactions with kids who initially appeared pretty unrelated but quickly began interacting with the therapist using the Floortime technique. He discussed his work with Dr. Stanley Greenspan, who is a consultant to the Rebecca School, and the book Dr. Tippy is writing about his research. The most striking thing Dr. Tippy mentioned was that the kids who have been at Rebecca School for 3 years no longer have the diagnostic criteria to be classified as autistic.

For my son, Floortime has been a fantastic intervention. When my son was diagnosed with the catch-all we all know and love, PDD-NOS, it was recommended that he receive 40 hours of ABA. He was not yet 2 and that sounded like a lot of structure for a 19 month-old child to me. We signed him up and he pretty quickly figured out that if he got all his “programs” done, his therapist would play with him. She walked in, he reeled them off as fast as possible. It always felt uncomfortable but I pushed aside my gut instinct because this is what our expert said he needed. At one point, one ABA therapist said my son could read 50 words. As a test, I rewrote them in different ink on different color paper. He couldn’t read any of the words – they were meaningless to him. Another therapist thought it would be a good idea to reward this 2 YO kid with pennies. Well, once he had two pennies, one for each hand, he was satisfied. On top of all that, we were instructed to stop him from doing any stim. Anyone with a stimmy kid knows that this job is a full-time one! Instead of having fun with your kid, you spend all your time as an adversary trying to stop them from doing something that, in all likelihood, they are doing because they need to.

What was the problem with this approach? The things that motivated my son were not being respected and enjoyed. The words the therapist chose were the words she thought he should know – not words that symbolized anything he was interested in or that got him anything he wanted. The pennies, he could care less about them. Plus, because I was always saying stuff like “hands down” and “stop spinning”, he was avoiding me and our relationship was suffering.

My epiphany came when I went to a SonRise training session. The first thing they said was join your child in their stims. I got home from that week, sat down next to my son and started spinning cars with him. He gave me the biggest smile I had seen in probably a year and within seconds was telling me how to spin the car, which car to spin and just like that we were interacting. The other important principle was to harness the things your child enjoys and build on them. My son quickly began to be happier and more related. It was very exciting.

When Rebecca School opened, we were thrilled. At last a school that used the same kind of principles we were applying at home with such success! DIR/Floortime is very similar to SonRise – respect your child and what they love, make the interaction the reward, the relationship is paramount. My son has attended the school for 3 years and continues to make huge strides socially and emotionally and academically. He loves to go to school. He is so much happier and so much more connected to family, friends, teachers and therapists. My son and I are no longer adversaries; we are on the same team now.

The bottom line is that ABA can teach a child rote skills but can’t really teach natural emotional and social behavior. You want your child to be motivated to relate to others because they want to, not because they are following a rule. In life, if a person can’t have social relationships, they will have extreme difficulty having a job or a lover, no matter how good they are at quantum physics.