Raising an Asperger's child to functioning adulthood

Estimated read time: 5-6 minutes

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SALT LAKE CITY — I remember sitting in church with my son who was about 18 months old. An older woman came up to me, played with him for a few minutes, then turned and said something like, "He’s a good little boy, now. Wait until he hits 2." Shocked, I simply smiled and thought once again, old women can be annoying.

And then he hit 2.

As his behavior became more difficult, we sought more doctors’ advice. Most played the ADHD key, some depression, some anxiety. We spent our days dealing with difficult mental, emotional and physical issues, and trying various medications, but nothing took. As a mother, I felt something was missing in the diagnosis and kept looking for the click. Finally, we found a specialist and the right diagnosis of Asperger's syndrome.

He was 7.

Now he is 20 and just finished a service mission for the LDS Church. Before that he attended BYU-Idaho where he did his own laundry, made meals (even nutritious ones), kept a schedule, and in general made his own life happen. How did he go from terrible twos to self-sufficient 20? I am no expert and have zero advice. However, besides prayer, trial and error, and a village of good people, here are a few things that have worked for us.

1. A solid relationship with mom. In speaking with different doctors, they have told me this is No. 1 for Aspies (their term). A connected, healthy, positive relationship with mom is key for these kids to create connection, understand social savvy, and trust the often foreign information they're learning. Plenty of positive is huge — writing a list of the great things about your child is helpful. Or “praise first” before sharing a to-do or correction.

2. Explain their diagnosis and skills they need to learn. Over the years when our son starts "cycling" — our word for his predictable behaviors in certain situations — we point out what’s happening. When he gets overstimulated, we remind him to take a personal time out. When he gets too "factoid" for five or more minutes (our phrase for endless fact-telling) I'll simply say, “That's two facts you've shared, now I need a connecting question.” He'll stop and say, “Oh yeah, how was your day?” Using real-time situations and a few years of home-schooling, I have spent time identifying social cues, hygiene, habits and how other people perceive him in conversations. Ultimately, these brief but timely teaching moments have helped him develop greater self-confidence and social smarts.

3. Use structure. As a young child, it was vital to transition him at least 5 to 15 minutes before moving to a new activity, leaving for errands, or getting ready for bed, etc. Having regular times of the day for bath, reading, meals and play time were all crucial in helping him not only establish routines but for them to become natural so he could focus on newer learning.

What is Asperger's syndrome?

Asperger's syndrome is a developmental disorder resembling autism that is characterized by impaired social interaction, by repetitive patterns of behavior and restricted interests, by normal language and cognitive development, and often by above average performance in a narrow field against a general background of deficient functioning — called also Asperger's disorder. Source: Merriam-Webster.

4. Wisely use a combination of Eastern and Western medicine. For a long while our son couldn't regulate his sleep. We tried various suggestions from doctors — sleep hygiene, regular rituals, Benadryl, and more. My husband felt it had to do with high cortisol levels (leaving him tired but wired at night) and found a Chinese adrenal herb and Melatonin that have both helped in some ways to better his sleep. Acupuncture has also helped. We’ve combined Eastern methods with Western medicines — finally finding two drugs to help bridge his neural and emotional gaps. But we’ve kept him on the lowest possible dose and always after working on the behavioral practices first (and combining them with medicines after). Each child is different and it will take time to find the right combination. 5. Teach him to think like a future adult. We encourage him to see himself as a grown up. When he first started working with my husband on a construction site, our son would be found sleeping under a truck. Now he is actually installing hardwood floors. It’s been bit by bit, increasing skills and awareness, giving the big picture all the time of where he is going.

6. Help him/her find something to “grab onto.” Michael Landon wasn’t always a successful director and Pa Ingalls. He came from an abusive home and in high school had facial tics and made involuntary gulping sounds. But one day in PE he threw a javelin 30 feet farther than anyone else and said that he found something he could grab onto, so he grabbed. He built his success on that one discovery. Our son loved Legos, then fiddling with videos, which morphed into stop-motion video movie making. We found a local contest, which he entered and won “Most Creative” and $500. That gave bolstered his confidence to try other events and talents.

7. He’s part of a family. We understand his Asperger ways. And yet, we need him to stretch socially. So we have him play games, go bowling with us, make and eat dinner together, and in general spend an appropriate amount of time with seven other people in his family. We remind him he’s as special as everyone else and he’s not the only one who needs attention. This helps him understand he can’t constantly consume our energy. He’s learned to walk into a room and instead of starting to speak about his interests, he now first asks, “Is this a good time?”

As parents of a child with Asperger’s, we’ve been grateful to see tremendous growth in our son, and enjoy his goodness and kind perspective of the world. And, we know that at any moment the house of cards could crash down around us. But we also know that we would begin again, standing card by card, more aware and able than the last time. And hopefully continuing to experience continued love and joy in the process.

(For an enhanced discussion on this topic, see the segment on “Studio 5 with Brooke Walker” airing this Friday at 1 p.m. http://studio5.ksl.com/?s_cid=s5path) Connie Sokol is an author, presenter, TV contributor and mother of seven. Contact her at www.conniesokol.com.