Let me begin by clarifying some common misconceptions about autism.
- Autism is NOT Rainman or a remarkably gifted child
- Autism is NOT a lack of eye contact, affection and social interactions
- Autism is NOT a mental health disorder
- Autism is NOT a person that posseses all autistic traits
- Autism is NOT a disease
- Autism is NOT _________________ (fill in the blank with whatever Dateline episode you watched on autism)
It is called a spectrum because there is more than one disorder falling under the umbrella of Autism Spectrum Disorders. They include Autistic Disorder, PDD-NOS, Aspergers syndrome, Rett's syndrome, Childhood Disintegrative Disorder. Autistic traits are found in many people. Does that make them autistic? Of course not. Each autism spectrum disorder requires a certain number of specific traits (i.e social delay). Many other autistic traits are common, but not required for a diagnosis (i.e poor eye contact and ADHD) Though this probably isn't the best description, I prefer to use a line when I explain this to others.
Autistic disorder_________________________________________Aspergers syndrome
(everything in between)
So familiarize yourself with the spectrum. If you get bogged down in the details, stop. Take a breather, have some chocolate and come back to it when you're ready to be focused. DON'T lasp into denial. Your child needs you. You cannot help your child until first you learn your child. Part of that includes getting an education about their particular disorder. By the way, when you hear the word "disorder", roll your eyes, get over it and visualize a ticket. That diagnosis is handy--it's a ticket. That slip of paper is the ticket to the ferris wheel of therapies and services. Take the ticket (though you realize it is just a stupid piece of paper) and jump on that ride! Here we go!
STEP 1: First things first--YOU!
Mourning is normal. You have to let yourself go through the process. Don't give yourself much more than a month or two if you can help it. You will still have many tears to cry and pillows to throw at the wall--just don't stay there. Get counseling. Cry. Throw big hissy fits and scream at the stars. Just DON'T stay there. Go through the process Pay particular attention to the "Getting stuck" portion. Ok, go to it. When you're ready, come back and procede through the steps.
STEP 2: Get that ticket!
If you have yet to recieve a diagnosis, and you suspect a developmental delay or autism, set up an evaluation. Contact your state's early intervention program. They will have information to hook you up with an evaluation. You MUST have a diagnosis to recieve appropriate services from the state. Our kids need all the help they can get. Don't settle for a continental muffin when the Shoney's buffet is right next door. Get that ticket! First Steps of Kentucky
STEP 3: Educate yourself.
What is the diagnostic criteria for your child's disorder? That's fancy talk for "what makes ya get that thing called a diagnosis." In truth, if you are worth your salt as a parent, you will never stop educating yourself. But here is a good place to start.
The Spectrum
STEP 4: Build your resources.
Find a support group--VITAL! You are never going to be an expert in every area in which your child needs help. What you can do is find the experts. Build a library. Visit your library. Ask around from friends and family if they know anyone with experience in speech/language, occupational therapy, Physical therapy, behavior modification, and autism therapy. You will be surprised at how many services and resources you will build by becoming a part of a support group. Google is your friend. If there are no support groups near you, visit the nearest one at least once and get some email contacts. People who have walked this road know the bumps, bridges and potholes. Beware of the boohooers. The who? The boohooers are people that show up to support group meetings to spill their despression but have little intentions of getting off their butt to work with their kids. Boohooers breed more boohooers, so stick with the people toting books and folders. Kentucky Resources Database
Step 5: Pull up your bootstraps and get to work.
If your child is younger than three, I recommend you contact your state's early intervention program. In the east, many states call it FIRST STEPS. Get in touch with them immediately. If your child is older than three, hold your horses and set up a home program first. You should be able to find what you need by navigating this site. Get to know your child BEFORE trying to get them into preschool. If you walk into a school with a "Hi, my kid has autism. What do I do now?" They are likely to respond with, "Oh! Just give him to us. We'll take care of everything!"
