Does your child’s severe autism leave you so tired and exhausted that you sometimes don’t even have time to take a shower?
Are your family and friends deserting you because they don’t like the smell of your incontinent child’s soiled laundry?
Maybe you need the missing element.
Dealing with severe autism can be overwhelming when the symptoms prevent your child from caring for him or herself. And it is not just symptoms relating strictly to autism that make life difficult, but the common comorbidities associated with autism.1 You have to do everything for your child, from brushing teeth to cleaning after a bowel movement. On top of that, you have to find ways to prevent him from banging his head against the wall, tearing wallpaper, or forcing a potentially dangerous anal prolapse. You have to somehow get an income, hold your marriage together, and then research what can help your child. You have the lazy critics who won’t research the disorder themselves, but who nevertheless have a ready opinion about how you have to “discipline” your child, as if that would make a difference.
You have read that there are treatments, and that there aren’t treatments. Some writers point to research showing behavior modification to be useful.2 Others point to research showing medical treatments to be of possible value, including natural treatments.3,4 Even if there are treatments, would they work with your child? How can you find out on your own?
All of these dilemmas point to one, common, missing element: mutual help. After all, who is more likely to understand what you going through than someone who is going through it already? You may wonder how it would be possible for someone on whom so much rests to be able to find time to lend a helping hand to another. Here’s how: just by doing what you are doing now. Let me explain. You already cook meals. Imagine if for one night you cooked twice as much. The incremental cost in time is low. Adding more to the pot is not as hard as the initial preparation. Yet, you have freed someone else from the entire task of cooking for the night. The same can be done for you, freeing you up for research (research that will also benefit the person who is cooking for you!). Or you can get extra rest one night to improve your health.
These kinds of arrangements can be made in many different sizes, from a small local alliance of families, to the creation of a larger “intentional community” of families with special needs. Perhaps a local house of worship can be made into a focus for these efforts, though more might be needed than what a local religious center can provide. Catholic Church Archbishop Charles J. Chaput, during an interview in the September 2015 issue of Columbia magazine about the World Meeting of Families, inadvertently highlighted the need for more to be done for special needs families when he called for lives of sacrifice that went beyond parish structures, and “local communities of … families that support each other more directly than many of our parish structures can provide.”5
Douglas Acres is one attempt to do just that.6 There are likely other grass-roots efforts to bring the benefits of mutual help to you. If you are at your wit’s end, then you need to investigate an alliance with families who are going through what you are going through. Don’t let despair destroy any chance you and your child might have for a better life. Reach out. There are better times around the corner.
1. Comorbidity clusters in autism spectrum disorders: an electronic health record time-series analysis. http://pediatrics.aappublications.org/content/133/1/e54.short
2. Outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings http://www.sciencedirect.com/science/article/pii/S175094671100153X
3. A pilot double-blind placebo-controlled trial of pioglitazone as adjunctive treatment to risperidone: Effects on aberrant behavior in children with autism. http://www.sciencedirect.com/science/article/pii/S0165178115005004
4. Sulforaphane treatment of autism spectrum disorder (ASD). http://www.pnas.org/content/111/43/15550.short
5. The witness of the family fully alive. http://www.kofc.org/un/en/columbia/detail/witness-family-fully-alive.html