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I Am a SNACCER: Special Needs Adult Child Caregiver

As the autism epidemic climbs to an all-time high of one out of every 88 individuals, a new breed of parent will emerge as the years fly by. The next decade will become known as the age of the parent caregiver. Presently, we are just on the tip of the iceberg. Those of us whose children were born towards the beginning of the epidemic, in the late 80s early 90s, are already there. Over the last several years, the promise of new intervention strategies, both therapeutic and biomedical, held the hope that many children would conquer this previously thought lifelong condition. And thankfully, many children did benefit from these strategies. However, there is a big difference between improvement and cure. And the result is that most children with autism will need some sort of support system their entire lives. Some will need a great deal—possibly 24-hour supervision, while others may need just some assistance with the dynamics of living independently. Being that autism is a spectrum disorder, the great majority will require something that lies somewhere on that continuum between total support and minimal help.

So what does this mean? Well, the obvious is that, as a parent, we will be involved in some form of caregiving our entire life. And also evident, but harder to accept, our child will need help in the years beyond our lifespan. These are separate but related issues. As a SNACCER and as a person who is professionally involved with other SNACCERS, I would like to offer some suggestions for coping with the stresses that both of these situations bring.

So let’s begin with issue one: Caregiving for an adult with autism or other special need. Having been a speech pathologist and owner of a therapy center for individuals with all types of conditions for over thirty years, I have been part of the process that trains and teaches children to communicate and take care of their own needs. I have had the pleasure of working not only with the children, but their families. I suppose that the implication of bringing your child to a therapy center two to three days a week for a long period of time is that eventually this person will learn what they need to know to become a fully independent adult. Unfortunately, that is often not the case. More frequently, the situation is that we can teach the individual to communicate in some fashion or form, but communication is not necessarily synonymous with conversational language. Again, some will acquire that ability, but many will not. They may learn to say or communicate what they want or need in a rudimentary way, but not be able to speak in long sentence-style language.

In terms of life skills, it’s similar. We often can train the children to learn certain skills such as brushing their teeth, dressing, showering, and even some basic housekeeping tasks. Others will exceed this expectation in leaps and bounds. We do have a small percentage of individuals that will learn to read and write to the point of being able to go on to job training after high school; some even attend college. But often, even with the most abled, social skill problems stand in their way of really being able to acquire and maintain a position in the real world.

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