Wednesday, February 15, 2012

Raising an Adult with Autism

Readers’ response to my last blog entry, “Emergency” took me by surprise. While writing about our trip to the emergency room to have Alex sedated after an especially upsetting meltdown was quite emotional for me, I didn’t anticipate the number of supportive, candid, and insightful comments that people made to me on Facebook and the blog regarding our experience. Autism moms with younger children expressed their concerns and fears for their children’s futures. Those with older children who had also faced the problems of dealing with meltdowns in adult-sized children shared their empathy, knowing how overwhelming these situations truly are, especially when limited help is available. Friends and family members provided an outpouring of love, support, and prayers, all of which help make the difficult times easier, knowing that we are not alone. When I started writing the blog over a year and a half ago, Alex had come through many struggles, and we were enjoying probably the easiest time of our raising him. I had thought that the blog could serve as a way to give parents of younger children hope that things do get better, and my earlier entries expressed an optimistic and positive tone. Our recent setbacks have forced me to expose the problems of raising an adult with autism, but perhaps this honesty has a purpose, too, in revealing the issues parents face when their children with autism grow up. Although I always maintain hope for Alex, I now realize that we still have more work ahead.

This week I read a blog by another autism mom writing about her son’s upcoming tenth birthday. In “Autism and the Adult Child: Honoring the Needs of Every Generation,” [Click here for the article.] Jo Ashline imagines her son ten years from now: “He’s halfway to 20 and less than halfway to becoming a man, a man with autism.” She goes on to talk about how people are willing to help children with autism because they’re little and cute, but she wonders, “But what about the kids that are over five feet tall, have scruffy hair because you can’t get close enough with a pair of scissors or buzzers to cut it, and are a taller, stronger version of their former 10 year old selves?” Her comment reminded me of a line from the recent premiere of the Fox television series Touch, in which Kiefer Sutherland plays the father of a young boy with autism. At one point, the father comments to his son, “The doctor says that you’re going to be bigger than me. How the hell is that going to work?” As the 5'3” mother of a 20-year-old young man with autism who has scruffy hair, is six feet tall, and is incredibly strong, especially when adrenaline kicks in with anxiety, Jo Ashline’s prediction is frighteningly on target. I’d also like to point out that while some children with autism require significant intervention to manage their behavior from an early age, Alex was always very easygoing and docile until adolescent hormones erupted. He was consistently cooperative and obedient, doing everything we told him to do, and we knew how fortunate we were to have such a good little boy. Even now, he is obedient except when anxiety gets the best of him; his aggression stems from the fight aspect of the fight or flight response, not from a desire to be difficult. After he has had meltdowns, he has expressed remorse that he “did bad things.” Of course, we know he can’t help when his anxiety drives his behavior into throwing, yelling, and hitting, which is why we are desperately trying to get his brain chemistry regulated so that he doesn’t have to be upset.

In addition to sharing her concerns about what will happen as her son grows, Jo Ashline also cites “the longest running longitudinal research on autism spectrum disorders during adolescence, adulthood, and midlife,” one I had not yet read. Published in the Journal of Abnormal Psychology, this research article entitled “Change in Maternal Criticism and Behavior Problems in Adolescents and Adults with Autism Across a 7-Year Period,” [Click here to access the article.] details how mothers’ criticism is related to behavior problems in their teenage and grown children with autism. Specifically, the article states, “…high levels of maternal criticism predicted increased behavioral problems in adolescents and adults with autism spectrum disorders.” Jo Ashline summarized the study’s findings, commenting, “...families with the greatest level of warmth and acceptance in the home contributed greatly to the continued positive development of the adult child with autism.” While this sounds reasonable, the implications of blaming the mother for the child’s behavior remind me of Bettleheim’s discredited belief that autism was caused by “refrigerator mothers.” Knowing full well that we have nurtured Alex with unconditional love and acceptance, I refuse to believe that his behavior has anything to do with “maternal criticism.” Instead of once again trying to blame the parents, who are doing everything they know to do to help their children with autism, researchers need to focus upon what is going on in the brains and metabolisms of people with autism that causes them to become over-stimulated and anxious, and they need to seek methods of treatment as well as potential cures. With that, I reiterate what I said in my last blog entry: pray for us as we keep searching for answers.

“The Lord has heard my plea; the Lord will answer my prayer.” Psalm 6:9


Mary E. Ulrich said...

HI Pam,

Glad to see you are also writing about being the parent of an adult. There aren't many of us.

As for the "maternal criticism" that's ridiculous. Just another hit at parents and way the professionals can excuse the fact that the child was in school for 22 years and they couldn't figure autism out either. Bet we could write a study on "professional criticism" and get the same results:)

Keep up the good work. Our power is in our love for our child, our stories, our determination.

Best wishes. Mary

Pam Byrne said...

Hi Mary,
Thanks so much for your comments; I bet you and I see eye-to-eye on many issues from our experience. :) We are at the forefront of a tsunami of autism that society is unprepared to handle. You are absolutely right when you said that our power comes in our love, stories, and determination. Best wishes to you as you, too, fight the good fight for your child.
Take care,