FALL JUST BLEW IN!
Welcome!
After a fall-like summer, only the leaves are signaling that the season has changed! And, of course, the new school year, which is well underway. I hope this finds those of you navigating the educational systems finally settled in with new teachers, aides, teams, working IEPs, and schools!
If you are visiting this site and do not have a friend or loved one on the autism spectrum, please know that any ideas you have for autism awareness or support will be greatly valued: we need training programs for our aides, Autism Awareness fundraising, summer activities/camps, walks, runs, and events (see Autism Speaks for ideas), and even activities at our festivals that are autism friendly, such as hosting a Companion Dog visit, or a quiet area. Most of us dealing with autism in our family are quite overwhelmed and struggle to do Autism Awareness or even keep a support group going.
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
Autism research is moving ahead so quickly now that it is hard to keep up. Here are some of our local events and researchers:
--Register now for a free conference at the Owego Treadway Inn on Oct 15. The Family Resource Network, based in Oneonta, is sponsoring the event, which is free for parents and $50 for professionals. Chicago-based guest speaker and author Dr. Paula Kluth will give a talk, “You're Going to Love this Kid: Teaching Students with Autism in the Inclusive Classroom.”
To reserve a spot, e-mail familyrn@gmail.com by Oct. 7.
--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: he is a not-so-new Assistant Professor at Cornell working on autism, an issue he was drawn to research from family experience.www.mattababy.org/~belmonte/
Finally, here is a lecture coming up in late October:
--SPECIAL COLLOQUIUM - Laboratory for the Neuroscience of Autism,
Department of Human Development, " Autism at the Crossroads between Genetics, Neurodevelopment and the Immune System: Recent Findings and Future Perspectives
" by Antonio M. Persico, Laboratory of Molecular Psychiatry and Neurogenetics University "Campus Bio-Medico," Rome, Italy and Department of Experimental Neurosciences I.R.C.C.S. "Fondazione Santa Lucia," Rome, Italy.
4.30pm Thursday 22 October (refreshments at 4.15pm) Morrison Room (A106), Corson-Mudd Hall
Kathy Gleason
suggestions@autismithaca.org
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Three Tier Consulting
Michael Friga has opened Three Tier Consulting to offer "training in effective interventions for children with autistic spectrum disorders. They assist schools and families using a "Blended Intervention Model" specific to the needs of the student, whether in a home-bsed, self-contained, or inclusion program." They offer Professional Development Seminars and Clinics, Team Consultation, and Online Training and Consulting.
Michael Friga, Ph.D., BCBA-D
Three Tier Consulting
130 Landon Rd. Ithaca, NY 14850
877-651-1038
www.3-tier.org
Dr. Friga holds a PhD in Educational Psychology from UC Berkeley and is a Board Certifified Behavior Analyst. He has assisted schools in California and New York to establish services for individuals with Pervasive Developmental Disorders.
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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THE QUESTION OF 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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