For parents who hear the words “your child may have autism,” reactions often come in one of two forms. One is relief that they may finally get an answer to what is causing their child’s developmental delays and can begin to address them. The other is grief in all its well-known stages – denial, anger, bargaining, depression and acceptance. Whatever the reaction, parents should know that their feelings are normal.
After the shock, there are clear steps parents can take to prepare their child and entire family for the future.
1. Get Informed
With more than 3.5 million Americans on the autism spectrum (ASD), and nearly 2% of children born today being diagnosed, there is a plethora of information to be found. A quick online search returns 245 million pages with the word autism in them. Here’s a great source: Autism Speaks: The 100 Day Kit for Young Children. . But be wary of everything you read: there is no one policing the accuracy of information on the internet. Make sure you are consulting reputable sources of information and providers. There are some unscrupulous providers who may try to capitalize on funding by providing services that are not evidence-based.
The Autism Research Institute provides a host of free resources, including support videos, for families of children on the spectrum.
The best news is that evidence-based therapies, like Applied Behavior Analysis (ABA), are being developed and researched every day, so that today’s treatments are light years ahead of the treatments just a couple of decades ago. ABA therapy is one of the only evidence-based practices for children with ASD, and research indicates that it is the “gold standard” for treating skill deficits and problem behaviors correlated with autism. Check out the Association for Science in Autism Treatment’s list of what “works” and what “doesn’t work”: https://asatonline.org/for-parents/learn-more-about-specific-treatments/.
2. Begin Right Away…Even Before the “Official” Diagnosis If Possible!
ASDs cause developmental delays, so the earlier the intervention, the better the chances of offsetting those delays and providing as happy and productive a life for your child as possible. Recent research at the Kennedy Krieger Institute found that parents miss opportunities to teach their children with ASD socialization if they wait to intervene. ABA is designed to be early and intensive — up to 40 hours a week.
But don’t worry; it’s designed to be reinforcing also. Many providers cannot accept children until they have their formal diagnosis, and most funding sources do not cover ABA until such time either. However, these services are highly in demand and often there are waitlists for ABA therapy. You should start reaching out to providers as soon as possible, and get on several waitlists for reputable providers (make sure your ABA provider is Board Certified, and has a reasonable caseload). You should also see if your insurance covers ABA. Because it is so intense, it is also expensive. But in SC, Ryan’s Law was passed in 2007 requiring most insurance plans to cover ABA in SC.
Carolina Coast Behavioral Services staff will talk to parents about ABA, what it is, what to expect, what it should be, even if parents are not yet ready to start working or even if they ultimately go with another provider.
3. Connect with Other Autism Parents
Numerous parent support groups, both in here in the Lowcountry and online, allow parents to vent about their issues, share experiences and best practices, and support each other emotionally. Lowcountry Autism Foundation and the Charleston Autism Society offer programs and services for families of children on the spectrum. The Lowcountry Autism Support Group is based in Mount Pleasant and MUSC’s Project Rex holds support gatherings the first Thursday of every month. Other groups for families of children with ASD abound.
In other words, you don’t have to do this alone.
4. Autism-proof Your House
A leading cause of death among children with autism is wandering and drowning. In fact, children with autism are 160 times more likely to drown than more typical children. To prevent wandering, employ sophisticated locks – like double-keyed dead bolts – that can’t be defeated by a curious child. Teach your child to swim; and especially if your child is nonverbal, consider a wearable GPS-tracking device.
You may need to take other steps to ensure the safety of your child. Remove knick-knacks and other light objects that can be thrown or broken during an outburst. Remove furniture that has sharp corners or can be easily overturned. Lock cabinets containing anything that can be poisonous when swallowed, like household cleaners and medications. Of course, early and intensive ABA will help you figure out the reasons for these tantrums, and help reduce and prevent them.
5. Avoid Neglecting Yourself, Your Marriage and Your Other Children
Raising a child with ASD can be an all-consuming and exhausting experience, and it can put immense strain on a family. It can also be a joyful, rewarding experience, particularly when the family comes together to deal with its new reality. Like a parent on an airplane securing their own oxygen first, parents can’t help their child if they’re not taking care of themselves and supporting each other. Your other children can’t be supportive siblings unless they receive the attention they need and deserve. Raising a child with autism is a marathon best run together. Remember, parents, you can’t pour from an empty cup! Carolina Coast Behavioral Services offers Parents’ Nights Out, as well as Saturday Socials, which benefit your child with ASD, and gives you some one-on-one time with a spouse, or sibling!
Carolina Coast Behavioral Services serves children, adolescents, and families with the best possible care through a focus on Applied Behavior Analysis therapy. Using evidence-based practices, they help children reach their fullest potential by gaining practical life and communication skills, and developing and extending healthy social relationships as a result. Find out how they can help your family by calling 843-259-8853 or visiting CCBS-SC.com.