When intellectually disabled adults lack cognitive tools to advance their own best interests, guardianship can provide a fundamental legal safeguard.
For some adults with autism, guardianship may not be appropriate. For others, like the author’s son here, it’s a crucial means to protect their best interests.
By Eric Jager
I’m very proud of my son as he turns 18. He has learned lots of skills which will increase his independence. He’s developing vocational and leisure skills with the help of his ABA therapists. He has shown real progress using his augmentative/alternative communication (AAC) device. He has a great sense of humor and makes his family laugh without uttering a word. However, for my wife and me, there is no realistic alternative to guardianship for our son who will be dependent on us and others throughout his lifetime.
Some people criticize guardianship for adults with intellectual disabilities as impeding on their rights. But in our case, we see it as the opposite—a crucial vehicle for protecting our son and advancing his best interests. Because in spite of our son’s progress, he remains dependent on us for virtually all aspects of his life including bathing, cooking, selecting appropriate clothing and initiating any kind of monetary transaction. He is not cautious around people he doesn’t know. He has limited communication ability. As he gets older, his lack of self-awareness poses an increased risk to his safety.
While we may hope for the best, it would be naïve to think that things will change significantly and irresponsible not to plan accordingly.
The author’s son can use AAC to express simple feelings and requests, but not the sort of complex or abstract thoughts fundamental to making important decisions through adulthood.
His biggest challenge is his limited ability to communicate because of his lack of verbal speech and his intellectual disability. The increased prevalence in the use of AAC over the past decade has been a welcome development, but many people, including some autism advocates, overestimate the potential of these tools to enable severely autistic people to communicate effectively.
For example, giving a dedicated AAC device or iPad to a person who is severely autistic is not the same as giving one to someone who lost speech due to an accident. A person who was capable of understanding and verbally communicating complex thoughts prior to speech loss may be able to do so again, given the right tool. Not so with individuals like my son.
He first began using AAC about 10 years ago. At that time, my wife and I were getting mixed advice from professionals on the benefits and potential drawbacks of using AAC. At the time, the biggest takeaway I had was that his lack of fine motor skills could make it difficult for him to manipulate the device or app to access the words and expressions he wanted.
Now almost a decade later our son can navigate his way around the TouchChat app and his Nova Chat communication system with ease. I can barely see his fingers move as he asks for ice cream, a bathroom, or a drive to the park or time with Grandma and Grandpa.
Unfortunately, in spite of the great work of his speech/language therapists, he is unable to use his AAC device to express his feelings (beyond being hungry or tired). Also, it can’t help him understand that Grandpa passed away a month ago. (He still looks for Grandpa when we visit Grandma). There is no communication technology available to teach my son the permanence and ramifications of Grandpa’s death, or other abstract concepts. Similarly, it won’t allow him to make or express decisions about his living situation when my wife and I are no longer around for him.
He can’t use AAC to tell us to answer a question as basic as “Where does it hurt?” Not long ago, his case of shingles went misdiagnosed initially, partly because of his inability to tell us the nature of his excruciating pain. His behavior changed dramatically at that time, including multiple occasions when he caused injury to himself and me. Even after the diagnosis, his doctors saw his behavior as an “autistic meltdown” and wanted to prescribe a powerful antipsychotic. His primary care physician suggested that we physically restrain him to prevent injury to himself or others.
These doctors often appeared more interested in controlling his behavior rather than his pain. My son’s iPad didn’t give him the ability to say “I’m only acting this way because I feel like my skin is on fire! Treat my pain!” My wife and I, however, knowing our son as well as we do, came to realize this very quickly. We, as his caring guardians, insisted on the appropriate treatment plan. We’ll continue to speak for him in this way as long as it is necessary and possible through his adulthood.
I know that there is no “one size fits all” regarding guardianship and the tools that will help our kids, and I don’t judge decisions made by other families. But as we accept the responsibility to support and protect our grown and disabled children, we must realize that guardianship is one pivotal legal tool that can help provide the means for them to remain healthy and reach their full potential.
Eric Jager lives with his wife and son in Somerset, New Jersey. He is a conference director who has produced and hosted events serving the autism community on topics including the transition to adulthood, augmentative and alternative communication (AAC) and employment. Eric sits on the Leadership Council of the NCSA.