Archive for May, 2011

Gene expression in the brain reveals surprising similarities and differences

May 26, 2011 9 comments

Autism is a very heterogeneous disorder. As the grand lady of neurology, Dr. Isabelle Rapin liked to emphasize when training new students “If you have seen one child with autism, you have seen one child with autism.” This heterogeneity has made understanding causes and designing effective treatments more challenging than it would be otherwise.

However, a new study published this week in Nature and supported by Autism Speaks’ Autism Tissue Program and Autism Genome Project reveals that the heterogeneity may not be as problematic as it initially seems. Differences in common molecular pathways appear to underlie the pathology in the brains of individuals with ASD.

Daniel Geschwind, M.D., Ph.D. (UCLA) launched an ambitious study to examine not just the variants of genes that may confer risk for autism, but the interaction with those genes and proteins working to support brain function. Looking for patterns of interaction in the brain, Dr. Geschwind and his colleagues sought to characterize the transcriptome – the set of fragments of instructions, called RNA, read from the gene DNA on the path to making functional proteins.  Importantly, unlike the gene DNA that is relatively fixed for an individual’s life, the RNA transcriptome is modified through experience and interaction with the environment.

The authors analyzed patterns of expression of RNA for three areas of the post-mortem brain tissue from individuals with ASD or typically-developing individuals. Two areas of the late-developing cerebral cortex (prefrontal cortex and the superior temporal gyrus) and a region of the cerbellum known as the vermis were compared between the autism and typically developed brain tissue. The first big surprise was that although the cortex transcriptome revealed over 400 different genes with different expression between the autism and typical brain tissue samples, the similar comparison in the cerebellar transcriptome revealed exactly two differently expressed genes. Whatever differences exist in the brains of individuals with autism, these differences are greatest in the instructions that guide the structure and function of the cerebral cortex.

This, however, was just the beginning of what the research team found. Imagine the cerebral cortex of brain is like a bustling metropolis – one part of the city develops into a residential area and the other becomes a business district. Both neighborhoods have very distinctive features that make them unique due in part to the time and manner in which they developed and the people who inhabit them. So too for different regions of the typically-developing cerebral cortex.  Different regions of the cortex develop at different times and with different inputs from the environment. The prefrontal cortex is one of the late-developing regions in the infant brain. Different regions also serve different functions, like integrating information from sight, sound and touch in the case of the superior temporal gyrus, and higher cognitive functions in the prefrontal cortex.

Importantly for Dr. Geschwind and his colleagues, these two cortical regions also have their own unique pattern of expression in brains from typically developed individuals. However, when looking for these unique signatures, the research team instead found surprisingly similar patterns of gene expression across the two regions in the brains of people with autism. Referring back to the metropolis analogy, in the autism brain samples, the residential and business districts are more alike than they ought to be.

There were also differences in expression of two gene networks between the autism and control brain samples. The first network of genes encodes synaptic function. This is reassuring because most of the autism risk genes identified through previous studies focused on synaptic function. The second network of differential gene expression was related to immune function and inflammation. This too harkens back to previous studies showing inflammation and immune system activation in the brains of individuals with autism. This gene network does not correlate with the results of large gene association studies like the synaptic network, indicating that secondary or environmental effects are involved in stimulating the observed inflammatory markers.

“This is the first study to show differences in the patterns of gene expression between brain regions, said Rob Ring, Ph.D., Autism Speaks vice president for translational research. “It’s those patterns of gene expression that enable the brain to function normally and to communicate properly with other regions of the brain.”

Taken together, these results have quite an impact on how we understand autism. The similarity of gene expression across different regions of cerebral cortex in the brains of individuals with autism tells us that we should look closely at very early brain development as these patterns in cerebral cortex emerge. The same goes for the network of synaptic genes that are differentially regulated in individuals with autism. However, the differences observed in immune and inflammation gene networks are more likely to be related to secondary or environmental effects.  We must follow all the leads this research has provided if we are to make the next steps in developing supportive treatments and therapies for those living with autism spectrum disorders today.

An Inside Look from ‘Perfect Pals’ Faculty Sponsor

May 26, 2011 4 comments

This is a blog post by Liz Reinemo, faculty sponsor of Perfect Pals, Nantucket High School’s mentoring club for students with disabilities. Liz works with Kim Horyn, Director of the Nantucket Autism Speaks Resource Center.

I am both honored and humbled to be the faculty sponsor of Perfect Pals, a group committed to ensuring that all kids have a friend and have some fun!  I became the faculty sponsor by chance, after a conversation with Kim Horyn, the director of Nantucket Autism Speaks Resource Center, who was wondering if I knew of any students who would like to volunteer their time to work with students with disabilities.  I immediately jumped at the opportunity to form a group, because I knew several of my students would reap the rewards of befriending students with disabilities.  Hence, Perfect Pals was born.

I was both nervous and excited by the thought of Perfect Pals.  I dreamed of what could be, and I explored all of the potential roadblocks.  It was important to me that the students involved were not let down.  At our first meeting we had thirty interested high school kids, eager to check out what the club was all about.  I was so pleased that these students, who already had a full plate, juggling rigorous academics, athletics, theater and extra-curricular activities, found the time and showed a sincere interest.  Word spread and at our first event, a Halloween Mixer, we had over thirty students come to help.  Watching my students outside of the classroom, and for some their comfort zone, has been a rewarding experience.  They are not looking to stand out as they can in the classroom, or are cocky like they can be on the athletic field, they are just themselves, kind, effervescent kids with big hearts who are humbled by the experience to help.  These students go above and beyond working in Perfect Pals.  I am lucky to be able to watch these kids reach out and sit with their pals at lunch, invite them to homecoming activities, read a book with them in the library and volunteer their time to babysit some of the younger pals.  Countless stories have emerged from the school community about what a difference our club makes and it is because of the dedication these students feel to their pals that keeps the club thriving.

It doesn’t get much better than watching a child’s face light up at finding a friend to talk Star Wars with or make a Valentine’s Day card for their favorite teacher or ride in the homecoming float.  It is especially rewarding when these students have disabilities, and for some this is their first taste at hanging out and being one of the gang.  Watching the pals play ping pong with their mentors or win a game of Uno is sheer awesomeness.  At a recent movie morning the pals got to dictate the events, everything from Jenga to coloring to table hockey.  The diversity in the room is heartwarming.  Every child is the same and is treated the same, and feels safe, loved, and accepted.  This is the second year of Perfect Pals and the growth in the students with disabilities has been remarkable.  At first many of our pals did not want their parents to leave.  Now, they are excited when they see their friends and feel comfortable telling mom or dad that they will see them later.  Being a part of their growth process is wonderful.

I am truly grateful to the parents of these children.  I have been stopped in the supermarket or at a game and listened to different versions of the same story.  The moral is basic and straightforward: Perfect Pals has made a difference in my child’s life.  My son/daughter can come to these events and be him/herself.  Nobody is there to judge them, and they can interact with a diverse group of kids, everyone from the prom queen to the hockey star, or head of the class.  There are no barriers.  My child feels accepted and has a blast!  That sums up the mission statement of Perfect Pals.  By providing activities and forming meaningful friendships within the club, parents are given much needed respite.  They do not need to continually entertain their child.  The students are interacting within their peer groups and learning life’s lessons.

I am a better teacher and friend from my work with Perfect Pals.  I watch my students step away from their friends and make new friends stepping out of their comfort zones, learning strategies of how to engage some of our students with special needs. I see the value of this club reflected in the delightful smiles of our pals who have discovered that they belong.  I witness the relief of parents who know that this club and its work is benefitting ALL children.  At the end of the day, it feels good to be part of something so great.

Click here to search our Resource Guide for recreation and community activities in your area!

Family Services Inaugural LIVE Facebook Chat

May 26, 2011 4 comments

In case you missed it, the Autism Speaks Family Services Team hosted their first LIVE Facebook Chat on May 25. The chat was an overwhelming success, with 426 participants!

If you have any questions,  you can call, 888-288-4762 and the Autism Response Team Coordinator will be glad to speak with you and help find answers.

You may have some similar questions asked in the discussion, so here is the transcript. 

Hi Everyone!
Thank you so much for joining this chat! We are so excited to share our resources with you all. Our goal is to point you all in the right direction and help you in every way that we can!
Comment From Guest

is there a test for asphergers syndrome?

Unfortunately there is no medical test to determine Autism Spectrum Disorders, the diagnosis is made through structured observations of the person.
Comment From Lilly

My son has moderate autism and is 16 years old. where and when do I look for services for him when he is an adult? What services does he get or can he get?

Family Services has just released the Transition Tool Kit, this kit will be a tremendous help to you and your family in finding resources go to
Comment From Guest

When I read “early intervention”, how old is ‘early’?

Thanks for your question!
Early intervention typically starts at the age of 2, although the earlier, the better.
Some children are being diagnosed at age 1 today because of better detection and awareness.
Comment From Angie

I sent a question, did it get received?

Hi Angie!
Comment From Melanie

I was wondering if you have any book recommendations for family members who dont know anything about Autism and educating them?

We are trying to answer as many questions as possible!
Our Resource Library is available online and we have a variety of autism related information and the latest books
Comment From Chall

How do I learn about support groups in my area? I currently live in Mt Pleasant. Also, is it possible to have a diagnosis of PDD NOS at age 4-5 and then suddenly fit ito a category like Aspergers?

Hi Chall!
If you visit our Resource Library, you can search by state to find services in your area
Also, it is true that children can change over time, so it is important to have your child reevaluated to track progress and changes in development
Comment From Marie

Is there resources or supports for siblings? I have an 11 year old son with Aspergers and Tourettes and our younger son who is 9 is dealing with some issues dealing with his brother…

Hi Marie – that is a great question
We covered this topic in a ‘Community Connections’
Comment From Annie Ellis

I asked a question and got no response. I’m wondering if you have any suggestions for getting my 3yr old autistic son, Jamey to eat or even try new foods?

Hi Annie Ellis
Selectivity in food choices if very common in individuals with autism
This should be included in your child’s IEP as a goal and addressed through a team effort because of the challenges of this type of behavior
There are several programs out there to help Jamey try new foods, it is a matter of individualizing it for your son
Comment From Dawn

My daughter has found a program for the summer for my grandson, but it is so expensive and not covered by her medical insurance. Is there help out there?

Hi Dawn
Summer Programs can be very expensive and one of the things we encourage families to do, is to ask for scholarships or sliding-scale fees for those who cannot afford to pay full tuition
Also, there are community groups who do make donations to cover the individuals tuition
Autism Votes is working to ensure that these types of programs can be covered under medical insurance.
Comment From DENICE


Hi Denice
Walk Now for Autism Speaks has a strong presence in Texas and we would encourage you to become a part!
If you need more help, check out Texas Resource Guide here:
You all have such great questions! We are working to answer all of them!
Comment From Guest

what sort of trainings might parents of children with (mild) autism want to participate or get trained in? (ABA, etc.)

It is well known that families that get involved with working with their children ahve a higher success rate in achieving their goals
It is important to find local trainings or workshops that can assist you with these details
Comment From chris

How do I tell my son about the changes his body is going through?

Hi Chris!
This can be a very difficult conversation
There is a ‘Sexuality’ section in the Transition Tool Kit that helps to explain the changes their body is going through
Comment From Sarah

My son is a 16 years with a diagnosis of asperger. He really wants to be like “other” kids, and would like to get a part time job…but making calls, etc. scares him. Any suggestions?

Hi Sarah! Thanks for your question
It is understandable that he would react like this. Practicing will help him learn and gain this skill.
He could take his resume and bring it to a store if he feels more comfortable face-to-face. Sometimes it is easy to interact in that way
Comment From allisa

I need to find qualified respite or care giver for an 11 year old with a dual diagnosis of down syndrome & autism. I am a single mom with 3 children….and I never ever have a break … there any options at her age ?

Hi Allisa
Typically parents will go through local agencies, like Easter Seals, that provide respite
Networking to find that respite worker is key – maybe other parents, your church group, local colleges, etc.
You are right – you need a break!
It is key to find someone that you and your child are comfortable with
Comment From Tasha

My daughter is 3 and just got diagnosed with Autism last week. When I tell people she is Autistic, NO ONE believes me. Not even family. Could the doctor and I have been wrong? Or is there a way to open peoples eyes and except it?

Accepting an autism diagnosis is a process
Sometimes family members will react with denial, and this is normal and difficult. If your child has been diagnosed by a competent professional then you should feel like you have taken the right steps in getting your child the right help that they need
Comment From arrione

Are there any good programs in Louisiana for autistic children?

We offer a Resource Guide Directory of autism resources and agencies that can be of help to you.
Comment From Courtney

We just found out my son has Autism last Thursday. We were also told that the waiver for funding for his treatment will take about a year. What can we do in the mean time?

Hi Courtney – I can’t specifically answer your question because most funding and treatment depend on the state you live in
In the meantime you can visit this page, ‘Your Child’s Rights’
You are doing the right thing about asking questions and asking why. The earlier you start, the better off you are
Here is also a link to our ‘100 Day Kit’ that can help steer you through early diagnosis
Comment From Sue

We have struggled with pubic school to get what our 8 y/o son with Asperger’s needs. They think all Aspie kids are the same. We will be home schooling in Fall. Can anyone suggest curriculum’s that help keep a 3rd grader engaged?

Hi Sue
We have developed a Tool Kit that you may find very helpful that is geared to individuals with Asperger’s Syndrome
Comment From Trina

Are there any resources online to help an autistic teen prepare for a job interview?

Here is the ‘Asperger Syndrome and high Functioning Autism Tool Kit’
Trina, I would recommend you visit our ‘Autism in the Workplace’ guide
‘Autism in the Workplace’ is a useful guide for helping individuals prepare for a job interview
This focuses on employment readiness
Comment From Traci

I am single mom with no income and I am having troubles finding the help I need for the guardianship paperwork for my son. He is turning 18 in July so I don’t have much time. Any suggestions?

Hi Traci
This changes depending what state you live in. There is a section in the ‘Transition Tool Kit’ called legal matters.
Guardianship differs from state to state so it is important that you discuss with a state agency
Hey Everyone!
We are so excited that you are all participating, but we just don’t have the time to answer everyone’s questions!
If your question goes unanswered you can call, 888-288-4762 and the Autism Response Team Coordinator will be glad to speak with you and help find answers to your questions
Comment From Suzanne

When my 3-year old was diagnosed a year ago with Autism, doctors and early intervention services were lined up to evaluate him. But nobody cares about getting my 8-year old a diagnosis. How do I get a comprehensive evaluation for an older child?

Hi Suzanne
We are so sorry to hear you are having difficulties. The process should be the same as a younger child, but we often recommend that you go through your pediatrician to get a referral. This is a good way to begin the process.
The school district and state agencies should also be involved.
This is a common complaint from families that have older children requiring an evaluation
Comment From amy

need information on how to make a child with aspergers behave at school

Hi Amy – here is our ‘Asperger Syndrome and High Functioning Autism Tool Kit.’
This is an excellent resource and you should be able to find just what you are looking for!
Comment From arrione

Do autistic kids need to get their hearing checked?

Hi Arrione
Along with their vision, hearing should be included in their annual check-up with their pediatrician. This is true for all children.
Comment From Jess

My son, 5, has problems with aggression. He has pretty severe sensory processing disorder (official diagnosis PDD-NOS). He’s always hitting and kicking the people around him. I’m worried it will keep him from having friends as kids are already eyeing him warily. What are the best resources to help us deal with it? Time outs and other typical discipline do not work.

Aggressive behavior can be part of having an autism spectrum disorder. It is important to have a professional understand and evaluate the child’s behavior. This is done through observation of the behaviors and the environments they occur in.
You should ask your child’s teacher or members of the IEP team for a behavioral consultation
Part of the evaluation will be a plan that will help to address behaviors across all environments
Comment From Devin

My 3 year old daughter has been diagnosed with PDD-NOS. I was just wondering if there are any ways to help her cope while out in public. We can’t stay at home ALL the time, but she just cannot function in public. It’s heartbreaking and embarrassing at the same time.

Hi Devin
Our recommendation is to get some help with this and your IEP Team should be a resource
It is important to have your child out in public and exposed to different people and communities. It is also important to deal with behaviors once they do come up
Your child will have the opportunity to adapt and learn new behaviors when you respond consistently each time
It is important that you are addressing these behaviors at a young page – good for you!
Alright everyone, this chat is coming to a close
Thanks to you all for participating!
We are so sorry if we didn’t answer all of your questions. We are still here for you!
Please call the Autism Response Team 888-288-4762 and you can talk with coordinators who will be glad to answer your questions

The Icing on the Cake?

May 26, 2011 24 comments

Ajay Rochester is a best selling author of 5 books on health and wellness and was host of The Biggest Loser Australia for 4 years. She now lives in Beverly Hills California with her son Kai, has a TV show in development and is currently working on her latest book “247 toothpicks – Living, Loving and Laughing with Aspergers!” You can follow her journey at

Putting the finishing touches on my son’s birthday cake I realise I have made a huge mistake. No, not misspelling his name, not miscounting the number of candles but making the wrong number of penguins to sit atop theAntarcticasnow scene I have spent the last week making. It has to be seven penguins or it just won’t be the work of love I want it to be.

There won’t be a foot stamping “I want a pony daddy” scene like Veruca Salt in Willy Wonka’s Chocolate Factory but it can mean the difference between a peaceful week leading up to the birthday picnic we have arranged or constant obsessing and begging to make the penguins total seven, more than likely winding up with him making his own out of paper and plasticine, placing it on top, unintentionally bringing the whole cake down – a little like our life in general – beautiful one day, stormy the next!

But, if “fixed”, could go so far as avoiding or at least minimising the inevitable anxiousness and almost guaranteed teary meltdown we always experience moments before any social occasion out of the normal weekly routine not excluding birthdays. It’s like my son has permanent stage fright except that in the words of the late great Shakespeare, “…all the world’s a stage…”

And before the high and mighty perfect parents with perfect children (aka the deluded ones among us) tut tut and say it is all about having discipline and being well behaved I must explain that my son has Asperger’s Syndrome – a high functioning form of autism .

Every kid is different, every day is different, every age changes the way in which it manifests, diet and nutrition can make all the difference one day and do nothing another. There is no “cure”, no antidote, not enough experts, differing opinions, too many sceptics, too much politics, not enough support, way too much ignorance and far too much discrimination from those who don’t get it. And yet if I was given the opportunity to “send him back” and make him “better” I wouldn’t. He is my blessing, my joy, my challenge, more meaningful than any troubles I might ever have, much more important than anything that rises up in my own ego, more precious than any metal I own and exactly as he is meant to be – perfect in his imperfections.

He’s not retarded or slow or dumb, despite having been called all that and more from kids and stupid parents alike (lucky they haven’t seen me reply with my fists!! GRR). He just sees the world differently a little like having blinkers that enable him to only see the world his way.

He loves penguins (thus the penguin cake) because they flap their wings like he flaps his hands uncontrollably when he gets stressed – the official term is stimming but we call it “Pengy hands” in an attempt to embrace all that he is with a healthy dose of humor. If you can’t beat it then have a bloody good laugh about it as often as you can cause when the tough times come there can be some very dark days. We like to BE the light at the end of the tunnel rather than wait for it.

At various times he has sucked his fingers, sucked his hair, sucked his clothes, sucked pens, hated washing his hands, washed his hands obsessively, been water phobic, food phobic and is currently germ-a-phobic. He can’t stand loud noise or bright light, could not touch paper for about a year (that was a tough year at school) and for a year and a half could not touch clothing for two hours after bathing and as such I had to lie him on the floor like a baby needing a new diaper as I slid pants onto my eight year old son, crying inside for the pain, desperation and humiliation I saw on his face. But with a tickle of the tummy and a joke about him always being my baby we turned it into an intimate moment, a few seconds to tell him I love him taking the focus away from what was really going on.

These phases come and go but the list goes on. We had the lumpy sock syndrome for a few years, with Kai frozen in his inability to get his shoes on his feet and get out the door to school crawling under the bed, smashing his head with his foot calling himself stupid and retarded and wishing he could die because in the midst of his disorder he knows it is not “normal” to feel these things.

Knowing him as well as I do, I know (but can’t ever really KNOW!!) the tsunami of fear rising up inside of him every time we do something out of the ordinary including having a birthday party – something every kid talks about year round! Not knowing what the next part of his day will smell or sound like, not knowing how the people will be, what it will look like, what will happen, whether or not he knows their names, how long it will go for, what he is expected to do and what might happen if something goes wrong if he can get there at all…it’s like putting a French speaking professor of science in a room full of Japanese history students and expecting him to teach the class and have the students tested at the end. Most kids would be peeing their pants with excitement whereas my boy wets the bed with fear, still at the age of eleven.

And so, with that old adage of “you have to pick your battles” as a parent of a kid with Aspergers you take that to a whole new level. You give them as much security as you can, as much familiarity as is humanly possible, including making seven penguins on his birthday cake because inside he will be happy all day knowing that that one thing is perfect perfect perfect perfect perfect perfect perfect and therefore gives him the solid foundation he needs to deal with all the other unknown frightening overwhelming factors of that day.

That way when we blow the candles out on the cake we can say, “Happy Birthday!” and mean it!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – 05.26.11

Scientists Find Molecular Similarities in Brains of Those with Autism (HealthDay)
The symptoms and severity of autism vary widely, but new research shows remarkable similarities at the molecular level in the brains of people with the disorder. Read more.

Prenatal vitamins reduce the risk of autism by half, even more for some higher-risk cases (Los Angeles Times)
Women who reported not taking prenatal vitamins immediately before and during a pregnancy were twice as likley to have a child with autism, UC Davis researchers reported Wednesday. If the women also had a mutation in a high-risk gene, they were seven times as likely to have a child with the developmental disorder, the researchers reported in the online edition of the journal Epidemiology. The study is scheduled to appear in print in July. Read more.

School founder denies he obstructed justice (Dedham, Mass.)
The head of a controversial special needs school denied in court yesterday that he obstructed justice four years ago, yet he agreed to leave his post as part of a deal with prosecutors that will probably lead to the case being dropped in five years. Read more.

Asperger’s Syndrome: High-Functioning Autism to Lose Its Name (ABC News)
Eileen Parker was 41 years old when she discovered her quirky, misunderstood behavior had a name: Asperger’s. The syndrome, which is marked by impaired social interaction and sensory overload, joins other neurological disorders on the autism spectrum. And for Parker, the label came as a relief. Read more.

Autism Speaks still growing, adapting in South Jersey (
On May 21, Mount Laurel hosted the 10th annual Walk Now for Autism Speaks. Almost 4,000 people were in attendance to show their support by raising funds for research, services, and treatments for those living their lives on the autism spectrum. Top fundraisers were honored on stage and given pins as a thank you for all their hard work during this fundraising season. Autism Speaks was also able to honor the few teams that have been walking for 10 years, since the beginning. Read more.

Autism in the News – 05.25.11

May 25, 2011 1 comment

Road to success: Senior says hard work helps overcome autism (Suwanee, Ga.)
When Zach Kallman was in sixth grade, he hopped onto a riding lawn mower and drove around his Suwanee neighborhood, asking people if he could cut their lawns. Read more.

A little help goes a long way (Australia)
Raising a child with special needs has its challenges but there are educational options that can enhance families’ lives, writes Melinda Ham. Read more.

East Yorkshire man invents dolphin therapy device (UK)
The device, called the Dolphin Dome, uses video screens and the sounds of the sea to recreate the sensation of being in the ocean with the animals. Read more.

In Town column: Billy McLean, who is autistic, has been big addition to Center Stage Jackson’s ‘Little Shop of Horrors’ (
A Google search not only gave Denise Weber a lead on a pair of massive plant props needed for Center Stage Jackson’s production of “Little Shop of Horrors,” it provided Weber, the artistic director, with a puppeteer who knew every line in the musical by heart. Read more.

School opens extension to meet growing demand (UK)
A new teaching block has been opened at an Oxford school to help cater for growing pupil numbers. Read more.

The Journey to Insurance Reform: Next Stop Albany

May 25, 2011 4 comments

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

On a gray, drizzly Tuesday, I rode an Amtrak train from New York City up to Albany to meet with parents and legislators who want to bring autism insurance reform to the Empire State. As the tracks skirted the Hudson River, I thought how much my son Liam, who has autism, would enjoy this trip. Staring at the view rushing by. Checking out the snack car. Asking a million questions of the conductor or people who just want to listen to their iPods.

Then I wonder why they are going to Albany.

Is what they are doing in the Capitol today just as important to them as this is to me?

It took trains, planes and automobiles to make this day happen…and luckily, so far, no boats. Back home the Mississippi River in my hometown of Baton Rouge was cresting. Families west of me flooded by opened valves in the Morganza spillway. I looked at the Hudson a little differently on this trip – watching it flow along, unobstructed, to the Atlantic Ocean – mighty and unstoppable. Rivers respond directly to their environment generally maintaining their course but occasionally overflowing their banks and destroying everything in their path.

Passage of reform in New York State  is not only incredibly important for New York families of children with autism but a key state for the rest of the country as well. By securing New York, our community sends a clear message to Congress that discrimination against people with autism must end – now. Additionally, it will provide coverage for people who live in states that have not passed reform yet provided they work for a company headquartered here.

For some kids in Utah, Ohio and Georgia, to name a few, relief might be on the way a little early.

I came to Albany to meet with parent advocates and network with other groups to create one formidable force – one mighty and unstoppable river of advocates made up of parents like those who drove up braving the inclement weather and apparently an alligator on the Long Island Expressway.

I also came partly to remind this otherwise progressive state that they have yet to do what 26 other states including Arkansas, Montana, West Virginia and my own home state of Louisiana have done.

The autism community was divided over support for last year’s bill and the river of support was directly affected by the environment. The initiative destroyed as the constituent river forked and flooded the Legislative and Governor office phone lines with calls both in extreme support and determined opposition. In the end, who wants to fund an initiative like this if the community it benefits is fighting about it. In this economy with scare resources, it’s just easier to fund initiatives with a more unified front.

This year though the river is moving along smoothly, staying within its banks. Community leaders from various organizations painstakingly compromised on language introduced one bill this year to move forward in a unified manner. But in order for this bill to become law, New York politicians will need to hear from their constituents. And our voices will have to drown out opposing forces outside the autism community.

Everyone is busy but we hear time and time again from every nook and cranny around the United States that face to face meetings with legislators are the most effective thing you can do for change. Every day the insurance industry has lobbyists who stroll the halls in Albany working against your kids in New York. If you want this bill, with the language the way it is now, you will have to stroll the halls or meet with your legislators when they are back in the district.

After riding on that train on Tuesday, I realize firsthand how hard it is to physically get to Albany. But I also learned that close to 1.5 Million people live in the Albany metro region. To those families, I am calling on you personally to do what you can to get down to the Capitol more regularly during the session. Meet with legislators and their staff. Please be our ground forces for families like yours who live 5, 6, 8 hours away on the other side of the state.

For the rest of New York, you are not off the hook! If you want this I hope over the next month you are prepared to make countless phone calls to support them. Make sure you are registered at!

Everyone gets nervous talking to politicians but don’t worry. If you have never done this before, we will teach you what you need to say and how to do this. We just need to know who is willing to commit to working this bill in the halls of the Capitol over the next six weeks.

If you live in Albany and want to become part of our ground force operations, please email me at


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