My two autistic children are so sweet, so darling, and so… so… disabled. Profoundly. Mentally. Permanently. Disabled. I wish I could be around forever to give them the love and protection they’ll need through their old age. But while we autism parents often joke about our need to achieve immortality, I see almost no discussion in autism circles about the very real need to boost ASD parental health and longevity.
So why not pull a Suzanne Somers and talk about it? While we can’t live forever, we can probably kick the grim reaper down the road a couple of years, hey maybe even a decade or two. This is not about face-lifted vanity, or Viagra ad wine-sipping in clawfoot bathtub old-age indulgence. This is about our minds and bodies thriving on this planet so we can help our kids as long as possible. (Though the wine-sipping part sounds pretty okay, too.)
In that spirit, here are ten things we autism parents can do to live, if not quite forever, then longer than we would otherwise, roughly in order of importance.
Cigarettes are disgusting body-rotting toxic mini-bombs. Our society is not close to hating smoking as much as we should. Yes, we know smoking causes lung cancer, heart disease, stroke, and nasty lung-manglers like COPD, but it also causes pervasive inflammation, suppresses immune function, and induces mutations and genetic dysregulation in all sorts of tissues. Cigarettes ruin your skin on the outside and your epithelial tissues on the inside. They also poison perfectly innocent people who have the misfortune to inhale the foul side smoke. Dozens of deadly pathologies can be traced to smoking, and research suggests smokers on average lose about 10 years of life. So if you smoke, stop now. Your body is not an ashtray. Your kid is more important than your addiction.
I know I just cracked a wine joke, but now I’m talking about heavy and chronic alcohol consumption. Alcohol is a toxic substance that not only poisons your liver and other organs and ups the risk of dying from cancer, it also impairs cognitive abilities, In the short term, that leads to higher likelihood of mishaps (drunk driving, anyone?), and in the long term can impair your memory and functional ability. When we’re caring for severely disabled grown children, we probably want our faculties fully intact, eh? An autism parent with dementia or anything like it will not be a great help to his or her grown kid.
Refined sugar is toxic to the body and chronic consumption can wreak all kinds of havoc, causing overweight and obesity, type 2 diabetes, heart disease, high blood pressure, vascular disease, and more. Sugar is a highly potent plant extract that basically terrorizes our bodies. And we Americans regularly and heedlessly dump sugar into our sensitive bloodstreams by — egads — drinking it, in the form of soda and juice. What a waste of a sweet tooth. If you just need, crave, yearn for sugar, at least have the dignity of a special confection, or high-quality dark chocolate worthy of your esteemed gut. But drink water. Lots of it. If you’d like, add good stuff like lemon, lime, or tea bags and you’ll perfectly happy without soda. The more you spike your blood sugar with soda or other sugary junk, the less able your cells are to metabolize sugar, the fatter and sicker you will grow, and the sooner you will die.
Diets fail. Don’t diet. Instead if you want to achieve nutritional and weight nirvana, focus on stuffing more food into your mouth. Yes, more food, but not just any food. Chomping piles of veggies, garnished with fats and protein, should be your daily routine. But how to eat a ton of veggies each day, you ask? First, dispense with your received notions of what breakfast looks like. There is no law or nutritional reason for pancakes, cereal, toast, hash browns, waffles, bagels, muffins, donuts or coffee cake in the morning. None. That stuff is cheap, easy and profitable, thus their unfortunate ascendance as breakfast staples.
Start your day instead with a giant bowl of veggies (perhaps a roasted or pan-cooked melange of any mix of squash, onions, mushrooms, beets, peppers, Brussels sprouts, broccoli, etc), topped with whatever nuts and protein(s) appeals to you: eggs, cheese, salmon, other fish, chicken, beef, Greek yogurt, cottage cheese. Extremely delish, economical, filling and nutritious. No blood sugar bump to wreck your metabolism and ruin your day. All it requires is a little mind-shift away from the Beige Breakfast mentality and toward something gloriously rainbowishly colorful. If pressed for time, you can cook your veggies the day before (several servings worth, actually, to last 2-3 days) and nuke them as needed.
For lunch you can eat more of that or create a heaping chopped salad of any combo or cabbage, carrots, jicama, cucumber, tomato, celery, radish, peppers, garbanzo beans or whatever real-food vegetable matter appeals to you, tossed with olive oil and vinegar and topped with a high-quality protein of choice. You only need a good knife for chopping, or have no shame and buy pre-chopped veggies such as those at Trader Joes. Be sparing with starches like bread, pasta, rice, white potatoes. Minimize added sugar.
Make abundant veggies, always delicious and incredibly easy to prepare, the core of your diet. Your body will be flooded with micronutrients, fiber, and good calories, and you (and your gut microbiota, while we’re at it) will call me and say thank you.
I hate the trendy term “intermittent fasting,” it sounds so painful and scary, no one wants to go hungry. But underneath that term is something we really should all be doing, and I think of it as daily vacay for your body.
In the Normal Rockwell view of life, the family sits down to dinner at 7pm or so, with potatoes, a roast, bread, green beans, a salad, and a bowl of ice cream for dessert. Well, rip that image to shreds, people. While big special dinners have a place at times of celebration, your body does not need or want a large meal at night. Instead eat something light (and veggie-based) around 6pm, and don’t eat again for at least 12 hours, preferably 14 hours. For example, stop eating at 6.15pm and eat breakfast at 8.15am the next morning. Why the food hiatus? Because you will improve your metabolism, digestion and insulin sensitivity if you give it a daily break. You will lose weight and feel more energetic. Most importantly, your body can devote its energy to repairing itself, which is the core requirement for healthy longevity. Drink all the tea and non-sugar drinks you want at night, and if you’re just starving pop some nuts or fruit and a bit of cheese before bedtime. But you don’t need a feast.
When you first start this routine, you might hear some tummy rumbles while you lay in bed, threatening to send you straight into the kitchen for some major scarfing. I would like to urge patience. Before long, going to bed with a full tummy will feel gross.
It’s been said that autism parents often have stress levels comparable to those of combat soldiers. And from what I’ve seen it’s often true. We have kids who require more vigilance, strength, money, and patience than typical kids. Some of our kids attack us and themselves, rip up belongings and homes, run out of the house and lead us on heart-stopping chases, and stay awake all night. Autism parents are some of the most stressed people I’ve ever met. So for me to say “shed stress” probably sounds obnoxious and totally out of touch.
Okay, I know it’s not easy. But stress can rob years off your life. It’s not just an abstract psychological state, stress can unleash hormones that alter your whole physiology, make your body less resilient, and increase your blood pressure. Get sleep, harbor no guilt about taking breaks from your kids (a happier you is better for them in the long run), do yoga or meditation, laugh a lot, and indulge in your favorite hobbies. And massages are no joke — regular rubdowns were apparently George Burns’ secret to a long and healthy life (cigar smoking notwithstanding).
We should also go to the source—and do what we can to temper our kids’ most challenging and stress-inducing behaviors. Special activities, outdoor adventures, iPads, AAC, supplements, medications, medical cannabis, can help soothe some kids and adults with autism and decrease aggression, anxiety, and irritability. Every person with an ASD is different and you should consult with your therapists and clinicians.
Financial worry is also a giant black cloud of stress looming over many autism families. It’s not too early to start getting your estate plan in order and learning about public benefits. A good place to being is the free video archive from Autism Society San Francisco Bay Area’s recent “Into the Future” conference: sfautismsociety.org.
Almost all of my autism parent friends have experienced either moderate or acute isolation because of their kids’ disabilities. This is nothing against the kids, it’s just harder for parents to bond with others when (1) their kid is not making friends with other kids; (2) their kid has behaviors that make it difficult to go out; (3) the parents are focused on therapies instead of the usual activities such as Little League or the school play; and (4) the parents feel they have little in common with their neuro-normal family counterparts.
We often host autism-friendly family parties at our home and so many parents tell me it’s the first party they’ve ever been to with their kids. Many say they can’t take their kids to other people’s homes. Some fear going out with their kid, at all. Autism-induced isolation is real, people. But isolation is deadly—those who are socially disconnected die younger than their socially enmeshed and supported counterparts. Sorry to get serious here, but though it seldom makes the headlines autism parent suicides are not uncommon. I know of three here in the Bay Area in recent years. The feelings of isolation, exhaustion and hopelessness can take a very serious toll. Use every penny of respite, every offer of help to get out of the house and stay connected with others.
The years are not kind to our bodies, we lose muscle mass, become stooped and stiff, our bones thin, our balance and gait get shaky. But more than most other parents, we must retain the strength, stamina, and agility we had when we were young. We can help achieve that by giving our bodies a daily physical challenge, while minimizing risk of injury.
This is something of a “do as I say, not as I do” moment, because my idea of fun was taking up the terrifying sport of figure skating at the age of 50. Body challenge, check. Low risk of injury, uh, not check. But weight training, yoga, resistance exercise routines with squats, lunges and push-ups, combined with some blood-pumping cardio, all those would do most of us good. Some autism parents I know go surfing, do Ironman triathlons, ballroom dance, play tennis, or do Crossfit. The possibilities are endless.
But when you exercise, do it for strength, flexibility, energy and stamina, and not for weight loss. Weight loss is mostly a byproduct of an improved hormonal milieu and metabolism, and that can best be achieved by following numbers 3, 4, and 5 above. Also, while we’re at it, don’t sit too much, which is what I’ve been doing for the past few hours typing up this blog post. Sitting also shaves years off your life. So I better finish writing this post pronto.
Oh one more thing about our aging bodies, post-menopausal ladies out there may be encountering some serious hormone plummets, causing brain fog and fatigue. Do not fear consulting a qualified menopause-trained doc about techniques and supplements to help restore your energy and mental acuity. Look up the North American Menopause Society to learn more.
I’m not a huge fan of preventive screening, since we Americans tend to spend too much money and take too much risk with screening relative to the benefit. But as we grow past age 50 the benefits often start to outweigh the risks and costs. Also some things like regular manual breast exams and skin exams for melanoma (especially for you light-skinned sun worshippers) are not only inexpensive and harmless, they can save your life. Talk to your doctor about other screens such as mammograms, Pap smears, and colonoscopies. Risks/benefits vary person to person.
I cannot leave this blog without singing the praises of chopped chicken liver. Micronutrients such as those that are abundant in liver help keep our tissues and bones strong. And contrary to popular belief, chopped liver is delicious (think of it as pâté on the cheap), and oh so easy to make. My dumdum-proof recipe:
Place one pound of fresh, organic chicken livers on a baking tray. Bake at 350 for about 30 minutes or until well browned, flipping them halfway. Take a large onion (red, yellow or white, whatever you prefer) and sautee it in a big dollop of rendered duck fat (available at US Wellness Meats, Whole Foods and other finer grocery stores) til translucent, almost browning. Add the baked livers, a dash of balsamic vinegar, some salt, and if you like, an organic hardboiled egg or two. Then place the whole shebang in a food processor til it looks like, you know, chopped liver. Yum!
I hope these suggestions can help all us autism parents last a little longer. The world needs us.
Jill Escher is a non-smoking, non-drinking nutrition fan who ice skates too often and is known to sneak in some chocolate. She is also founder of the Escher Fund for Autism, which funds projects in the realm of genetic toxicology, president of Autism Society San Francisco Bay Area, a housing provider to adults with autism and developmental disabilities, and the mother of two children with nonverbal forms of autism. She can be reached at [email protected].
Disclaimer: Jill is not a doctor, nutritionist or medical professional. The foregoing represents her opinion, is for informational purposes only, and is in no way intended as medical advice. Before starting any health endeavor, please consult with your personal clinicians.