Sunday, February 23, 2014

Social Skills in Adults with Autism

Yesterday, I was reading a rather discouraging article about autism in adults entitled “Social Skills, Contentment Evade Adults with Autism” by Jessa Netting. [To read this article, please click here.] Based upon two studies of adults with autism (which is a field with limited research since most studies focus upon children with autism), scientists found that while adults with autism made progress in some skills over time, they did not improve in others. Specifically, the studies found that adults with autism tended to improve in their adaptive living skills, which include tasks performed daily, such as grooming and managing money. Adults with autism also generally improve in their independent living skills—perhaps because their adaptive living skills progress over time—as evidenced by their ability to work at a job and live away from their parents. In addition, repetitive behaviors often found in children with autism tend to decrease in adulthood. However, these studies also found that language, cognitive, and social skills tend to remain stable in adults with autism and do not improve over time. Moreover, the research also showed that quality of life, which indicates contentment and satisfaction, tends to be lower in adults with autism than in typical adults.

Now that Alex is an adult, the findings of this research bother me because all parents want their children to reach their full potential and to find contentment in life. What bothers me more, however, is that this research goes no further at this point to discover why three critical skill areas—language, cognitive, and social—remain stagnant in adults with autism. While I’m not a scientist, I have had the opportunity to observe autism first-hand on a daily basis for more than twenty-two years, and I have some theories of my own about what may be occurring. When autism is first diagnosed in young children, professionals urge parents to seek early intervention at a seemingly frantic pace, emphasizing how critical early intervention is. After Alex was diagnosed, we enrolled him in special needs preschool, began speech, occupational, sensory integration, cranial, and visual therapies, and worked with a doctor on biomedical treatments. In addition, I did floor-time therapy with Alex to increase his interactive skills. Over time, these therapies are typically phased out when the child makes enough progress to “graduate” from the programs. As the child matures, more effort is placed upon independent living and adaptive skills so that he/she can function in life without needing parents or other adults to handle these tasks.

Another consideration for the lack of improvement in skills may be that at age 22, most students with autism no longer receive educational services. With limited community resources, many adults with autism may not be receiving the structured programs and training they need to continue developing their skills. Also, they may not be receiving therapies they did as children, such as speech, that may still assist their progress. If these adults are not getting the help they need in structured programs, they probably can’t develop the skills they need to be successful and to have satisfying lives. What can be done to prevent this stagnation of language, cognitive, and social skills so that adults with autism can find contentment in their lives? In time, the staggering number of children who have autism will become adults and will need support and services so that they can function in society and find fulfillment in life. I fear that communities are not preparing for that reality, and adults with autism and their families will suffer the consequences.

When Alex was 20, we placed him on a waiting list for a day program that serves adults with a variety of disabilities, hoping this would provide him with opportunities to continue developing his skills. Mostly, however, we wanted him to have the chance to interact with a variety of people so that he could increase his social skills. More than a year and a half later, we are still waiting and have accepted that we may be waiting a long time for that program. Fortunately, Alex qualifies for state disability benefits that provide services to help us improve his skills. As I explained in a previous blog entry, “Plan B,” we have been blessed with a wonderful behavioral therapist who works with us twice a week to address Alex’s anxiety, behavior, and social skills. Thanks to his excellent case manager, we were able to reconnect with our former music therapist, a young man who is a terrific role model for Alex. Three afternoons every week, we have these support services helping us improve Alex’s language, cognitive, and social skills as he interacts with these therapists and learns crucial life skills. With these interventions, Alex is getting better in many ways, and we are truly grateful for the progress he is making. Moreover, he is happy and content, which is a tremendous blessing.

On Friday, his behavior therapist planned an activity that focused upon life skills. She had Alex pick out a recipe he would like to make, and they made a grocery list of the items needed to make gluten-free and dairy-free banana raisin muffins. Then the three of us went shopping at the grocery store where Alex found the needed items and placed them in the grocery cart he pushed, and he paid the clerk when he was finished. After that, Alex and his therapist followed the recipe and made the muffins with her guidance. Although Alex and I have baked together over the years, this experience was novel because he was following the directions of someone other than Ed or me. Alex handled the activity very well, enjoyed himself, and felt a sense of accomplishment. In addition to activities like this, his therapist plans to take him to restaurants and have him order his own food; to prepare him they will practice with menus and social stories so that he will know what to say and do. While God has given us the resources and good people Alex needs to develop these skills, unfortunately, not all adults with autism have these opportunities.

As I re-read the article about adults and autism, I found one quote especially interesting: “What became increasingly obvious, the more we were looking at all the studies together, was that we just cannot make generalizations about adult outcomes in autism,” said Iliana Magiati, assistant professor of clinical psychology at the National University of Singapore. Perhaps the reason why generalizations cannot be made is because critical interventions can make a difference, as we have seen with Alex. As more children with autism become adults with autism, resources must be available so that they can continue to develop their skills. Only then will we have adults with autism who can lead independent and content lives, which is the hope of all parents whose children have autism.

“Getting wisdom is the wisest thing you can do! And whatever else you do, develop good judgment.” Proverbs 4:7


Bright Side of Life said...

Thank you for an interesting post. The future is a worry, that's for sure. We don't have anything in place in the way of adult facilities etc etc here. My son is on the more severe end of the spectrum and our focus for the last few years has been on Relationship Intervention Development. I think that at the end of the day we all do what fits for our situation and focusing on the relationship which in turn leads to so much more as been working well for us. We also do cooking together! :-)

Anonymous said...

I definitely wonder what will happen when all of the children with autism "grow out" of the system. Their needs certainly don't change, and I hope the powers that be begin to realize the critical importance this has for our future.

Pam Byrne said...

Hi Bright Side,
Good to hear from you! I hope that more communities will offer services for adults on the spectrum because their parents will need more support as they get older. I've heard good things about RDI and am glad you find it's helping your son. I agree that we all have to do what's best for our families, and we are both fortunate to have found ways to help our boys.

Pam Byrne said...

Hi K.C.,
I agree that something needs to be done soon to offer services for adults because there is going to be a slew of them needing help. Unfortunately, parents don't live forever, and we need to make sure our adult children will be cared for when we aren't able to care for them ourselves. Thanks for your note--always great to hear from you.