Links Resources Information
There is a plethora (isn't that a tacky word) of information on the Internet. A word of caution, watch out for a data dump, and over kill of info, Amazon has 497 books about autism. Act first, learn later. Early Intervention is the key.
Check to see if there is an Autism Society of America chapter near them. This is the first place to start!
If you have a friend without Internet access, refer them to their local Department of Human Services, the local school system, or the nearest university.
The United States Department of Education Tons of stuff, not easy to find. Better yet write the Secretary of Education
Rod Paige Rod.Paige@ed.gov
400 Maryland Avenue, SW
Phone: (202) 401-3000 FAX (202) 401-0596
Cure Autism Now Founded by Jonathan Shestack and Portia Iversen Cure Autism Now is the largest private funder of autism research, since its founding in 1995.
FEAT Families for Early Autism Treatment One of the best resources on the net.
Autism Research Institute Founded in 1967. They have a very good Autism Checklist in PDF format that can be downloaded.
National Information Center for Children and Youth with Disabilities A formal definition of autism and a useful site.
Duke University Medical Center This is Duke's Autism Primer: Twenty Questions and Answers about autism.
The Lovaas Institute for Early Intervention Dr. O. Ivar Lovaas, a pioneer with extensive clinical experience and more than 35 years of scientific research. He da man!
Assistive Technology The school can provide software, hardware and other devices to help you child. Talk to the school about it and do some research. It can be an important issue.
There are hundreds more, but you will learn more finding them yourself. There are scams, kooks, and crooks who take advantage of parents.
Ramblings from the father of an autistic childThis is a section for me to sound off. Be advised this is nothing but personal opinions. It isn't Gospel. I could be all wrong.
Teachers are Good Talk to your child's teacher daily if possible. Ask questions like, "How was inclusion today, how long was it? "When is speech therapy and what is she saying?" "How was his behavior in class today, any 'timeouts'?" "Can you have the speech therapist call me?"
School Systems This is a situation where the whole is less than its parts. There are some hard working dedicated people in school systems. There are employees who really care about Special Education and the kids in it. There are many others however, who are more concerned about funding, budgets, and staffing. Their focus is on administration, not education. Never forget a school system is like a large business, every organization has a budget, and if you run that organization and do not meet yours, your raise is lower. Keep this in mind when you ask for IEP Related Services, or anything out of the ordinary. The chances are you will not get it the first time you ask. You need to document why your child must have what you are requesting. If you have problems find another parent to help you.
Pediatricians, it has been our personal experience that they do a inadequate job recognizing autism. Ten minute HMO office visits do not help. They seem to be so caught up in physical development. Sometimes they do not ask the right questions about socialization, communication and behavior. See the Nine Questions.
Communications I hate this word! I like write, and speak or talk. Be careful not to get caught in this trap. IEPs typically discuss improving communication skills. Remember sign language is communication. You want your child to SPEAK. The goal is to get the school to encourage ORAL skills, - get the kid to talk.
PECS The Picture Exchange Communication System is great, especially for non verbal children. My personal opinion is sometimes teachers are not thoroughly trained in using this wonderful system. If a child has some oral speaking skills (the kid can talk a little) and PECS is used incorrectly, it can limit speaking skills.
Negotiate As a parent you must learn to negotiate. Ask for a lot, but learn compromise. This is especially important during IEP meetings. Always toss in some stuff you do not expect, they may give you something else just as good. Remember, if you don't ask, you will not get.
Keep Raising the Bar This is the hard part for the child. Once a task is mastered, move on to a more difficult one. As an example get the child to start saying "Door" or some other word, then move to "Open Door" then "I want door open." If a child can say door, they can probably say open and so on.
Inclusion Insist upon it, even a few minutes a day is better than none. Sometimes when a classroom is just autistic students they imitate each other. If the school says your child is not ready, tell them to put a teachers aid with him or her for 5 or 10 minutes a day.
How will this look at twenty Take a look at behavior, especially aggressive behavior and ask the "How will this look when my child is twenty" question. If the answer is "Not Good." try and stop it now. Do all you can to stop inappropriate behavior.