It’s official. In some ways, it confirms your worst fears. In another, strange way, you’re relieved to have a name for your concerns — autism.

Either way, the first step of your journey into the world of autism is over and you’re beginning the next. But what is that next step?

Simply put, your next step is to GET HELP!

If your child has not yet been involved with the public school system, now is the time to contact them. Under federal regulations, intensive childhood early intervention services end on the child’s third birthday. It does not mean you’ve missed out if your child is three or older, it just means that the intense level of services may be harder to come by, if there are waiting lists for services, they may be longer and in general, service coordination may be less … coordinated. 

If your child has not yet reached his or her third birthday, act quickly to obtain those early childhood services and don’t tolerate a moment delay beyond what the agency is allowed under the law.

Apply for state developmental disability services but read the relevant parts of the Public Support Systems section of our website first.

Begin to learn as much as you can about autism and your child’s specific diagnosis. Review the evaluation reports and “Google” every word or phrase with which you are unfamiliar. Don’t stop until you know the material so well that you can successfully describe your child’s condition to your grandparents. In short, you need to know it so well that you can explain it to anyone.

Next, start learning about the various types of intervention or treatment for your child’s diagnosis. Explore comparisons of the various approaches. Learn how and why each is used and why it may (or may not) be appropriate to use with your child.

Read, read, read. There are hundreds of books out now on autism and autism spectrum disorders. Start with the basics before moving onto the more advanced material. Look for specific strategies and overall theory alike. But unless you are really interested in the historical (meaning generally inaccurate) perspective of autism, I would recommend limiting your collection to those published in the mid-1980s or later. That does not mean that there isn’t anything worthwhile written before then, or that there isn’t bad stuff written since. It is just that there is more “bad” information written earlier and since you are only beginning your education on autism, I would start with some of the latest material.

Check out our policy document entitled: Guidelines for Evaluating Services. This document will help provide an outline for questions to ask and what to look for when trying to decide the best kind of services for your child.
Websites such as www.quackwatch.com; the Association for Science in Autism Treatment http://www.asatonline.org/ and the American Council on Science and Health http://www.acsh.org/ help to provide a critical eye on some of the service offerings that will come your way. You need to be just as critical reading the “watchdog” sites, too. Just remember, a practice, therapy or intervention labeled as “unproven” is simply that, not yet proven. Through rigorous research, some may become established practices while others will go the way of leeches. If you treat treatments in this group as “quasi-experimental” and you go into it with some skepticism and an understanding of the potential harm, then you will be doing your child that much more of a service.

Find a parent support group. If there isn’t one in your area, travel to the closest one — at least for the first few months. If there isn’t one in your area and you don’t want to travel, start one in your area. Often, the fastest way to finding out about what resources are out there for your child is to talk with someone who has already taken the steps you are just beginning to take. Probably one of the most important reasons to seek and sustain support from (and for) other parents is the synergy and unity that develops. See Advocacy section.

If you are an adult who just recently received a diagnosis on the autism spectrum, with the exception of the parts involving public schools (no, you don’t have to go back), most of the rest applies to you, too. Seek the support of other adults with autism at support groups and online — however you can. If you’ve made it into adulthood without a diagnosis, chances are that you don’t have cognitive functioning issues as much as those involving social interaction. There are social skills groups (formal classes and informal get-togethers) available throughout the state and more cropping up all the time. Check out the ASC Community Resource Database for groups near you.