Since the IDEA Act gives each state leeway in how each implements and organizes services for kids on the autism spectrum, we will make this a little general to apply to everyone. Why? Because the standards they have to comply with are the same. So, although the names and procedure differ a little, the basics are the same. Some states do what’s required, others go that extra mile. This branch of services is what helps your kid at home and in the community, not at school. The agencies are specifically divided.
So, the whole process starts because you think there’s something wrong. You don’t know exactly what it is, or how to explain it, you just know. That’s basically how it works for all of us. We didn’t come into all this knowing everything about autism – we got thrown into the deep end of the pool and had to learn to swim very quickly. And sometimes it will feel like you’re drowning. Just keep paddling.
- Talk to your family and caregivers (if any) of your child. Grandparents generally have a clue if something is not right, even though they may find it difficult to explain – and usually won’t volunteer the information, trying to spare you pain.
- Educate yourself. This always bugged me, because no one ever told me how to educate myself. For example, our book, Navigating Autism: The Essential How-to by Parents for Parents, goes into detail on how to do all this stuff, so I hear. That’s the reason we wrote it, actually. It wasn’t because we were just teeming with a whole lot of spare time with nothing better to do. Autism Speaks, TACA and Autism Society, to name a few, have websites that describe what you are looking for in autism spectrum disorder. And remember, every kid is a little different.
- Look before you leap. Observe your child with your new knowledge. Write it down, don’t rely on your memory. It’s human nature to block out horrible experiences – especially those involving your kids. It’s genetic, not just you. Pain and trauma fade with time, because if they didn’t, no woman would have more than one child. A video camera can be your best friend on this.
- Your pediatrician may not know. Everyone says, talk to your pediatrician. That’s not necessarily true. Unless they’ve had a previous patient or someone in their personal life, your typical pediatrician generally doesn’t have any more experience with autism than you do. Yes, it is worth a shot, but don’t get discouraged if they don’t know or their advice isn’t particularly helpful.
- Keep everything. Yes, it’s a pain. All communication relevant to your kid. We just stick it all in a “chron binder.” I may not remember what category I filed something under, but I generally do know around what time of year it happened, so we just 3-hole-punch it and stick it in there. Seriously, most of us plan our lives around the kids’ school calendar now. So, you generally know if it was around the Halloween parade or stuffing 35 Valentines and baking cookies.
That is the nutshell of starting services for your child. Kind of like a mall cop – observe and report. The next hurdle is actually contacting the appropriate agency in your area that handles it. But making sure you have the right information is the first big step. We don’t want you to simply say “I don’t know” when they ask what your concerns are.