Parenting is a challenge to begin with. Caring for your child on the autism spectrum gives you added concerns to consider and even more decisions to make.
Noting the Importance of Safety
Safety is a major concern for parents regardless, but there are extra challenges involved in keeping children with an autism spectrum disorder, or ASD, safe. Children on the spectrum are sometimes targeted by predators because of their difficulty in communicating their experiences. They’re often less able to recognize danger and are very prone to simply wandering away. According to the National Autism Association, autistic children are four times more likely to wander from safety than neurotypical children.
Autism advocate Chantal Sicile-Kira writes that children on the spectrum should be taught the same safety rules as other children, like don’t open the door for strangers and don’t cross the street without an adult. Older children need to understand what constitutes sexual abuse. Adjust these lessons to your child’s ability level and repeat them as often as necessary. Try using teaching therapies such as Social Stories to explain safety rules.
The autism wandering education organization AWAARE suggests teaching your child to swim, since drowning is a leading cause of accidental death among ASD children. It also recommends Medical ID bracelets with your child’s diagnosis and your contact information.
Dealing With Irritability
Irritability, frustration, and tantrums occur often in ASD children because of their hypersensitivity to their environment or their difficulty in trying to communicate.
Basic tactics that work for many other children may soothe them, such as car rides or soft music. Over time, therapy that helps children learn better communication skills can help to cut the frequency of irritable episodes.
For children at least 6 years old, your pediatrician may offer you a prescription to buy Abilify, which is FDA approved for treatment of irritability related to autism. Several studies published between 2009 and 2012 showed an improvement in irritability symptoms for ASD children who took Abilify (also called aripiprazole).
Deciding Which Therapies Are Best
Perhaps one of the most confusing considerations for parents is deciding exactly which therapies and educational interventions to use. Hundreds of different therapies are being used to treat autism. For many of them, only anecdotal evidence exists, so they have neither been proven nor disproven by research.
Some therapies are aimed only at the individuals who might benefit from them. Speech therapy may help children who are trying to speak but don’t do so clearly. Sensory therapies are helpful to those who are hypo or hypersensitive to sound and heat.
Behavioral therapies have the most science backing them up, including applied behavior analysis in its many forms. ABA involves positive reinforcement of desirable behavior by a trained therapist. This may benefit autistic children of any age, but evidence suggests that the earlier it starts, the better. It’s also better when parents undergo training in ABA so that they can reinforce the therapy between sessions.
You know your child best, and his or her needs and abilities. The good news is that research is now underway for many more potential treatments, with many clinical trials available to those who want to try them out.
Finding Financial Help
A study published in the May 2012 issue of the journal Pediatrics found that families of autistic children tend to earn nearly $18,000 less per year than families of healthy children. This may be because such an intensive level of parental care is involved and because it’s difficult for families to obtain enough appropriate services so that parents can work as much as they otherwise would. Meanwhile, medical care and therapy are expensive.
There is some relief available at both national and local levels, but you must conduct research to find it. Apart from federal help such as SSI or Medicaid, many states have Home and Community Based Service Waivers that you may apply for. These programs help families to afford services at home or at community clinics, without having to institutionalize their children.
You may also discover private organizations such as Imagine a Way, which helps to fund the early therapy that ASD preschoolers need.
There’s a lot to think about. As a loving parent, you’ll make your way through these four considerations and many others.
Cynthia Nardis has been writing online about health and other topics since 2006. She lives in Cleveland, Ohio, with her husband and two children.