APRIL IS AUTISM AWARENESS MONTH!
Welcome!
Autismithaca is just this website, not an organization, and it focuses, at least for
now, on helping parents and people with autism to approach and navigate the autism
services in the Ithaca area. If you have ideas for new dimensions, I am happy to
expand this site!
Exciting News
Spring is kicking off with some local autism talks and conferences.
Autism Success Stories: Autism Awareness
April 15th, 6-7:30pm, Tompkins Public Library
This event is to bring families affected by autism together to learn about resources
in the community. It will take place in Borg Warner Room.
Then...
"A Land We Can Share: Access to the Literate Community for All".
Students with autism are frequently left out of rich and
meaningful literacy experiences in the classroom.
Dr. Kluth will share
with us her strategies for expanding the invitation for all learners to
participate in
these experiences. Conference
participants will learn how to give all students, including those with
significant disabilities, access to the literate community. The ways
in which literacy can help every
learner achieve a more fulfilling and
inclusive academic life will be underscored. Dr.
Kluth has
taught strategies for successful literacy and inclusion all
over the world. Her core philosophies
are that students with
disabilities are the experts in their own lives, and that they should
be
given opportunities to educate, collaborate with and learn from
thei r peers and teachers in
inclusive settings.
April 30, 2010 The Howard Johnson Hotel Ballroom 75 North Broad Street Norwich, NY
Registration is $50.00. Contact The Family Resource Network at familyrn@gmail.com
or call 607-432-5516.
The Groton Parents of Special Needs Children Support Group has been meeting
quite regularly. Meet other parents, make connections, share information and learn about resources.
All parents welcome! Please call Heather Clark or Paula Ray at Tompkins Community Action,
607-898-3040, ext 16 and leave a message.
William Hudenko and his team at Ithaca College have found a link between laughter and
autism: http://www.ithaca.edu/hs/depts/psychology/news/6441/
--Ithaca College has an Advancing Autism Treatment team and is beginning a new research
project on the relationship of parents with their children on the autism spectrum. They are
looking for the parents of children ages 4-8. http://www.ithaca.edu/autism/Site/Home.html
--Matthew Belmonte at Cornell is working on autism, an
issue he was drawn to research from family experience.www.mattababy.org/~belmonte/
Kathy Gleason
suggestions@autismithaca.org
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Ithaca College's Advancing Autism Treatment
"The autism treatment laboratory at Ithaca College is dedicated to researching cutting-edge treatments for children with autism. Our mission is to improve the functioning of children with autism and enhance the lives of their families. The Advancing Autism Treatment team (AAT) consists of a group of researchers, trained clinicians, and undergraduate students who are devoted to researching methods of improving autism treatment. The unique form of treatment currently being evaluated combines a more traditional behavioral approach with a novel emotion-focused component. The AAT team consists of 13 members in association with various agencies and supporters. Please feel free to explore the web site to meet some of the treatment team members, explore useful treatment links, and to get updates on the study progress." http://www.ithaca.edu/autism/Site/Home.html
Parent Support Group
A parent support group has formed for parents of children with developmental disabilities, including autism. It began on Wednesday, April 22 and planned to meet from 6-8pm at the Cayuga Medical Center, 301 Dates Drive, Ithaca. I don't have further contacts on this, so let me know if you know!
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Considering a Diagnosis?
You may be told that your child will not require a formal evalution for autism until elementary school, and/or you may not be ready for a diagnostic label to be attached to your child, but there are good reasons for giving this matter very careful consideration. Simply put, all the studies show that intensive attention to autism as early as possible makes your child's life easier. In Ithaca, the only practical way to access--and keep-- the full range of services your child may need is to get the best diagnosis possible, preferably from a developmental specialist with whom you maintain regular contact, even if it is only annually.
This is a different decision from telling other people in the community about the diagnosis. Privacy laws will ensure that teachers, therapists and aides will all work with your child without announcing a "label" to other students, or even to your child until you are ready. On telling your child and having you child tell his/her friends and classmates, see:
http://autism.about.com/b/2007/06/02/your-advice-requested-when-is-the-right-time-to-tell-your-child-about-his-or-her-autism.htm
One reality of programming of services in Ithaca is that resources are limited and the community is small enough so that everyone goes to what is available. That is to say, Ithaca does not have a fully two tiered system of 1) governmentally based services for those with financial needs and 2) specialist care services only for those with excellent insurance or who can pay. This means that sometimes the best resource available for your child is one that was created through Medicaid or a program requiring that your child have a diagnosis.
After a year of trying to figure out what "autistic tendencies" meant for our child, we opted to go to see Dr. Susan Hyman at the Strong Medical Center in Rochester, on a referral from our family doctor who had heard her speak up at the hospital. It took 6 months to get an appointment. However, she is terrific. She is an expert actively involved with autism research, therapies, and education. She helps us set high but realistic expectations for our son's services back in Ithaca. Her annual letter describing his progress and development plays a significant role in our meetings for his IEP. The choice of a specialist is a decision making process in itself. The advantage of adding a doctor at a research hospital to your local team of caregivers is to be sure you are benefitting from the latest research, as things are changing fast with ASDs.
Should you "label" your child so young?
This is a serious consideration for children on the high-functioning end of the spectrum, one laden with emotion and uncertainty about what is best. It is a popular and delicate topic of conversation at parents' groups (where not all participants have taken the step of a diagnosis but are dealing with the issues.) In Ithaca, you child will receive services for the specific issues he or she is exhibiting, but without an umbrella diagnosis, these services will probably be more fluid and less predictable over time. A formal diagnosis of autism allows your team to know it is working to give your child the best start on a lifelong issue.
http://www.autism-society.org/site/PageServer?pagename=about_whatis_diagnosis
In sum:
1) The diagnosis of autism vs. simple identification of certain symptoms makes your child eligible for more services and special programs that cannot otherwise be received without a formal diagnosis.
2) An authoritative diagnosis accompanied by a clear statement of needed therapies helps district meetings go more smoothly. Should you ever need legal assistance to get or restore services (such as an aide or therapies), a doctors' letter that specifies the research-based criteria for such services is invaluable.
3) In Ithaca, there is no guiding umbrella of ASD over the educational curriculum, as yet. So your child will receive a suite of services based upon the specific individual developmental issues that need to be addressed (pramatic speech, occupational therapy, adaptive physical education, etc.) It is very difficult to keep track of all of these services. Having good outside professional guidance allows you to just focus on your child with a good sense of what to expect of the services provided based on the latest research. AND the diagnosis can help you become eligible for a service coordinator if it all gets to be too much, and your child is Medicaid-eligible (if anyone is putting money aside for your child's future, see the piece on a Supplemental Needs Trust.)
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A treatment method or an educational method that will work for one child may not work for another child. The one common denominator for all of the young children is that early intervention does work, and it seems to improve the prognosis.
--Temple Grandin
" Autism itself is not the enemy... the barriers to development that are included with autism are the enemy. The retardation that springs from a lack of development is the enemy. The sensory problems that are often themselves the barriers are the enemy. These things are not part of who the child is... they are barriers to who the child is meant to be, according to the developmental blueprint. Work with the child's strengths to overcome the weaknesses, and work within the autism, not against it, to overcome the developmental barriers. "
-- Frank Klein, autistic
Please write to chat, to send ideas, corrections, and other information to Kathy at:
suggestions@autismithaca.org
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