Sunday, September 13, 2015

Reality Check: Adults with Autism and a Lack of Independence

Last week, Ed and a colleague had a conversation about their families, and his colleague kindly showed interest in how Alex is doing. She asked where Alex is living and if he can drive. Thinking perhaps she didn’t realize Alex’s limitations, Ed reminded her, “You know he’s autistic, don’t you?” Although she did remember that Alex has autism, she didn’t know the full extent to which autism impairs his independence. Ed went on to explain that Alex is living at home with us and will likely be living with us for a long time. In addition, he does not have a driver’s license, and that’s a good thing. With his impaired motor skills and the medications he takes for anxiety, he would be a danger behind the wheel. We know this because we have seen him “drive” Dale Earnhart, Junior’s race car on the NASCAR video game at our local arcade. When he’s not running into the race track walls, he’s running into the backs and sides of other cars. He will not be driving anytime soon, not even “slow on the driveway every Saturday” like Rain Man’s Raymond Babbitt.

Here’s the reality––most adults with autism cannot live independently. Earlier this month, The Indiana Resource Center for Autism at Indiana University posted the following on Facebook: “Today, the unemployment rate for those on the autism spectrum is as high as 70 or 80 percent.” However, even they seem to need a reality check, as they added, “From the first moment of diagnosis, we need to be teaching skills that will promote a better outcome for our students/children.” I have some news for them: we have been teaching those skills for more than twenty years, and Alex is still currently unemployable, due to his impaired motor, social, and language skills, all of which we have been addressing through multiple therapies and interventions. For example, every day since he was little, we have worked on his manners by reminding him to say “Please” and “Thank you,” yet he still needs constant reminders to say these polite phrases. He’s not intentionally rude; he’s just socially impaired, despite all our best efforts to teach him manners.

Last weekend, The New York Times published an essay by Eli Gottlieb entitled “Adult, Autistic and Ignored” that addresses the problems adults with autism face. As the younger brother and guardian of his older brother with autism, he has seen firsthand what life is like for adults profoundly affected by autism. He points out that 39% of young adults with autism receive no services after high school, and about 90% of adults with autism are unemployed or underemployed. In addition, he notes that little research has been done regarding adults with autism since most autism research focuses upon children. Specifically, he quotes a professor at University of North Carolina at Chapel Hill, Dr. Joseph Piven: “There is almost no literature on older adults with autism in the field, so we virtually have no knowledge base.” If no one bothers to study adults with autism, no one knows what their needs are or how to help them.

The recognition that adults with autism need better services is not a new concept. In 2007, Autism Advocate published an article entitled “When the School Bus Stops Coming: The Employment Dilemma for Adults with Autism” by Dr. David L. Holmes. This article addresses the problems that occur once children with autism are too old to receive supports from their local school districts. This article focuses upon the lack of available services, the importance of appropriate placements, and potential employment options for adults with autism. In addition, the article emphasizes planning for the future, specifically, putting supports into place, such as Medicaid waivers. Dr. Holmes ends the article optimistically saying that progress is being made in helping young adults with autism make the transition from school to work; however, the reality is that this is not so. Most adults with autism are unemployed and living with their parents.

In the September 2013 article “Few Young Adults With Autism Living Independently,” Shaun Heasley cites research that shows that nearly 9 in 10 young adults with autism have spent time living with a parent or guardian, and most have never lived independently. Quoting researcher Kristy Anderson, “The evidence presented in this study suggests that the vast majority of this population will be residing in the parental or guardian home during the period of emerging adulthood.” I might add that these adult children will probably be living with their parents or guardians even longer as funding for supported living and availability of group homes becomes even more limited as more and more children with autism become adults and tax an already overburdened system.

Despite all of our best efforts to prepare our children for adulthood, many of our children with autism cannot live independently. Not only are they unable to find appropriate jobs, but they also need supervision and assistance with daily living skills, which means they require expensive and not always available supported living facilities, or more likely they must live with their parents or guardians. In a wonderfully candid essay, "I Never Dreamed," published this week, autism dad Jeff Davidson outlined the reality of how much is required to care for his son who has autism. Among the many daily tasks he lovingly performs for his son, he states, “I never dreamed he would always need our help with bathing, getting dressed, shaving, and all of the other basic needs.” Unlike his son, Alex is mobile and verbal, yet he also needs a great deal of help with his daily living skills, which is why he lives at home with us.

To be honest, Alex in many ways is a six-foot-tall toddler. Every day, we must help him with meal preparation, getting dressed, grooming (including washing, drying, and combing his hair, along with shaving, brushing his teeth, and keeping his fingernails and toenails clipped), and cleaning his eyeglasses and reminding him to wear them. Thankfully, he is very cooperative with us and likes to be clean and neat, so he doesn’t mind that we tell him he needs to wear deodorant, and he happily takes a bath every day. In addition, we administer his medications and vitamins three times a day, and he willingly swallows every pill, which is another blessing. As his personal assistant, I arrange all of his appointments, consult with his team of therapists and other professionals who work with him, take care of his finances, deal with the insurance company, and do his laundry. (To be fair, I also make appointments and do laundry for his dad.) Since he cannot drive, Ed and I chauffeur him wherever he needs to go.

While we are happy to take care of our beloved son who needs our help and thankful that he has made significant progress in his behavior, we also want him to become more independent. Knowing that he will probably outlive us, we hope that he can live a fulfilled life on his own someday. In the meantime, we keep working with him to develop the skills he will need, praying that God will provide everything Alex needs so that one day he can be independent and not constantly rely upon us or anyone else for most of his needs. As we wait, we hold onto our faith, trusting that God will always take care of Alex.

“I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers!” Isaiah 65:24


Anonymous said...

This is a really good post. I used to believe that, with proper support, even the most severely autistic people with intellectual disability could live independently. Now I am myself not intellectually disabled, though my autism is significantly impairing. I however have been residing in an institution for eight years now and only lived independently, with substantial support, for three months. I do for clarity's sake not want to compare my situation to Alex's, as I am in many ways probably more capable than he is. I do mean that it took myself failing despite adequate skills training, albeit at a late age, to realize that most autistics have severe limitations. We need proper services, hopefully as non-restrictive as possible, but also safe enough for the autistic person.

Pam Byrne said...

Dear Bloggingastrid,
Thank you for your comments; I really appreciate hearing your perspective on things. Clearly, you are much more articulate than Alex currently is. I totally agree that more support is needed for adults with autism so that they can enjoy greater independence. I wish you all the best.

Take care,