Autism Summit - recap

June 26, 2004

Okay guys just my (personal) quick braindump before bed of the things that stood

out to me - if I missed anything someone else will post I'm sure!

There was a full house for the Summit today. It was so nice to finally put

faces to names - Tonya Hettler, Amy Sosa, Singleton, to name a few. The

ATC did a great job of pulling it off and WOW! Congressman Sessions is such an

advocate for our children with autism. Our other Congressmen should follow

suit.

Hundley/ATC - purpose of N.TX Summit was to hear what is going on at the

national and state level (we didn't get a chance to hear state level necessarily

but more on that later). spoke at the DC Summit in December. Lee

Grossman/ASA had made the suggestion to " take it on the road " and she

immediately called Congressman Sessions and got it in the works for North Texas.

We're the first ones to do something like this. Their hope was to bring

together the " brightest and best " today.

All the slides from the presentations today are supposed to be on ATC's website

in the near future: www.atcoftexas.org.

Rowlett/ABC News Dallas - talked about his 17-year old son with autism and

the need for advocacy - " we need our legislators to explain the problems and get

financial resources from the government. " Of course we parents have to explain

to our legislators first.

Lee Grossman/ASA - my first time to see him present. He was awesome. Very

real-life message about the " state of autism " . One of his slides showed that

90% of the $ for autism is being spent in Adult Services. However there's no

Adult Services to even be proud of today. There are only 25 adult service

providers (autism specific) in the U.S. Hundley heads up this group. With

the rise in autism and 50 new diagnoses being made every day....we're in big

trouble in the future. Early Intervention ! He had some really great slides so

hopefully they'll be up on the website soon. ASA has adopted the " Educating

Children with Autism " book by National Academies as their educational policy.

Ann Wagner - NIH - reviewed the Autism Roadmap/Research Matrix - couple of

personal complaints - it talks alot about early behavioral intervention and the

need for more research, clinical trials. WHY NOT USE THE RESEARCH ALREADY DONE

AND PARENT/PROFESSIONAL TESTIMONIALS THAT IT WORKS....WHY WAIT? Also

functional communication was mentioned as a long-term goal. NOT TRUE!!! CAN BE

DONE TODAY WITH PROPER INTERVENTION.

Rob Beck/ASA and Cordero/CDC - talked about rollout of the Early Diagnosis

Campaign - they showed samples of some of their ads and they look really great.

Even a new " growth chart " for children that shows developmental milestones right

on the wall chart. If you want to get involved in the campaign, send an email

to angela.colson@... with your name, email, address, phone.

Gail Houle, US Dept of Education - she's the " point person " for autism (special

ed and parent training). Lots of talk on professional development, areas on

website to see projects funded in the states, etc. Didn't take notes but her

presentation has it all. She also talked about Parent Training/Advocacy Centers

in each state. Does anyone know about one in TX? She said it'd be attached to

her handout online at ATC. , is this your organization????? Gail's

email is gail.houle@....

Barry Waller - Dept Aging/Disability re: Interagency Council's State Plan - we

all got a chance to meet him in the a.m. to give him a face with our emails and

he introduced us to Dr. Garnett Mr. Waller was really encouraging a parent force

to advocate for our children, legislation, etc. We learned that Dr. Garnett was

just appointed as the Chairman of the Council at Wednesday's Council meeting.

Apparently " someone " has been bugging Governor 's office and they called

him Tuesday and asked him to step up to it. Interesting timing huh? Dr. Garnett

mentioned they were thinking of renaming the council (?) and not having the

agencies be a part of it. That's crazy and would literally take an " act of

Congress " to do. Mr. Waller and Dr. Garnett presented together. Mr. Waller on

the HHS Consolidation - we really need someone to be at those DADS input

meetings next week. Dr. Garnett presented on the Council and the State Plan.

They had copies of the State Plan as handouts. He said the Commissioner of HHS

has committed to keeping the Council but they weren't sure exactly where it

would fall beyond that and what would be happening with it. THIS IS NO EXCUSE

TO NOT ANSWER THE QUESTIONS WE'VE ASKED. We'll be following up for sure - we've

made Liz Scillian the parent contact to be liaison between our group and the

Council until we can hopefully get some new parents on there. Dr. Garnett also

gave out a new email for the Council - autismdocuments@... The Council's

priorities are:

1) Finding a " home " (WHY DO THEY NEED AN OFFICE?); 2) Finding a funding " stream "

for their plan; 3) Getting an identity - are they an advisory committee or a

council?; 4) Providing a report " Picture of Autism in TX " ; 5) Public Input

Meetings - Amy Sosa volunteered to coordinate those for him. Apparently they

also get public comments before each quarterly meeting? 6) Create the Advisory

Task Force - but no $ (THIS IS NOT A MONEY ISSUE - PARENTS WOULD DO IT FOR

FREE). Decide if it should be regional, how often to meet, etc.

Best Practices - Dr. Bond Chapman, Center for BrainHealth at UTD talked

about her research; Dr. Jo Webber talked about ABA ! We applauded really loud

and I think it scared some of them! Good handout - should be included online.

She's an awesome resource for those advocating for ABA. Dr. Sigafoos on study

with ATC on computer-based instruction with adults with autism; Dr. Janet Kern -

Sensory Study with ATC;

Congressman Sessions is asking for a " plain English " interpretation of some of

the study results mentioned in the " Best Practices " . He really wants to

understand all this so he can advocate for it appropriately. Congressman

Sessions committed to a follow-up " summit " in the near future. We had submitted

saying " Thank you to everyone but we are hoping for Phase 2 with TX legislators,

TEA, ECI, etc. " Really wants to get the educators involved and make it during a

time easy for them (school break). Really wants us to pave the way for other

states to follow. He also mentioned having been in ARDs with parents of

children with autism and the need for there to be an " expert " on the ARD

committee. For example when advocating for teaching strategies based on ABA,

better make sure there's someone there that truly knows ABA and can explain how

it will benefit the child ( I know some parents fit the bill for sure). He also

mentioned his wish for children with autism - a $12,000 annual " credit " (for

lack of another controversial word) for children with autism to attend school.

He didn't necessarily say private - he wants to work with educators but in some

cases there may be need for autism schools. DON'T GO OFF - I'M JUST THE

MESSENGER!

The Autism Treatment Center really deserves Thanks for pulling this off for our

community!

Kim

June 26, 2004

Thanks Kim for all the great information. Thanks to everyone that

represented our kids there.

Theresa, SA

> Okay guys just my (personal) quick braindump before bed of the

things that stood out to me - if I missed anything someone else will

post I'm sure!

>

June 26, 2004

Thanks Kim for all the great information. Thanks to everyone that

represented our kids there.

Theresa, SA

> Okay guys just my (personal) quick braindump before bed of the

things that stood out to me - if I missed anything someone else will

post I'm sure!

>

June 27, 2004

The conference was awesome! It was so empowering to be able to have face to

face access to such highly placed figures in the world of autism advocacy

and research.

>Gail Houle, US Dept of Education - She also talked about Parent

>>>Training/Advocacy Centers in each state.

Unfortunately many parents were at their parent conference in Houston that

was June 24-26. Next year it will be in Houston from June 16 - 18, so if

you're interested, put it in your calendar. http://www.partnerstx.org/ They

publish a newsletter

There are 3 groups:

Path, which covers East Texas, DFW

PEN: which covers San and all points west

TEAM: which covers Houston and all points south ('s in that group)

Their conference was piggy-backed onto the Texas Council for Exceptional

Children's conference http://www.tcecweb.org/about.html

Best Practices --

Also, Dr. Kim presented about " Vegas Nerve Stimulation Resulting in

Reduction in Autistic Behavior " or something like that. Very interesting

talk about the unusual forms (and often behavioral forms) that seizures can

take despite a normal EEG. Also seizures are usually present when there are

frequent sleep disturbances. About 36% of people with seizures don't

respond to drugs, so a device which stimultes the vegas nerve has been

developed. They only looked at 4 boys, but the results seem to indicate

more study that many other autistic symptoms in the boys were reduced. Very

interesting.

Probably my best takeaway message was that everyone dealing with a school

district needs a copy of " Educating Children with Autism " to bring to the

IEP meeting, so that when you are discussing your child's needs with the

school, you can point to the pages in it that discuss your issue and say,

" Look, this was recognized by the National Academy of Sciences. You can

check it out on-line before you buy it

http://books.nap.edu/books/0309072697/html/

June 27, 2004