In a small condo outside Disneyland, an Indian man I’d just met urged my son, my husband and I to eat the yogurt, lentils and hot naan bread his wife had prepared. Her long skirts swished as she served us, keeping her eye on their newly diagnosed four-year-old boy. We were strangers, but already committed to each other. Autism had brought us together.
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Over the next eight months, he’d call me, and we’d review the family’s legal case for behavioral services filed by the attorney I recommended, along with the child’s preschool support needs and their 30-hour-per-week therapy program. I helped smooth out behavioral goals, and advised on diet. I did this on speakerphone while driving or from home on weekends. I’m not a doctor, lawyer or therapist, but I’ve studied autism daily for 10 years. Most of all, I’m a parent.
If the couple’s child had been diagnosed with cancer or cystic fibrosis, he’d have gotten a doctor’s caring explanation, treatment guidelines, and help with his insurance coverage. With autism, people like him get groping, uncomfortable sentences: “Autism is a lifelong neurological condition with no known cause or cure…maybe it’s genetic. Get him into special education.” Since a 2011 study says one in every six US children has a developmental disability, including the rising cases of autism and attention-deficit disorder, doctors will be even more challenged to meet a family’s need for information in the next decade. Mentors fill that knowledge gap. Usually the experienced parents of children with autism, mentors are the real saviors of new autism families.
Something To Share
Before my son was diagnosed in 2000, doctors ignored my worries—it was preschool aides who later identified his autism. My son’s father didn’t want me to tell anyone, ashamed to spread the “A” word, but I insisted on calling the “friend of a friend” who had a daughter with autism. She led me to more moms, who instructed me on getting therapies, dealing with the school district, starting our son on a special diet, and finding autism doctors. Luckily, everything worked, and my 13-year-old son has been a smart, funny, sweet and verbally gifted child for years now, as long as he takes medications and avoids dairy and sugar. These strangers saved a child lost in his own world, who’s now a teen singing in a musical and hanging out with the guys.
Since my son’s diagnosis, I’ve shared advice with thousands of people in my written work and presentations, but I also mentor people over the phone, the computer and in person. Mentoring has helped me stay current on autism issues and offers me added benefits—it gives me a mental break from my own child’s problems, and reminds me that there are other families out there who have it far worse than mine. I also get the gossip about the latest heinous school district acts, and the word on the best GF/CF cookies and pizza.
But seriously… properly defined, mentoring is when one person provides helpful guidance to another in a special relationship. Long a career booster to men in the business world, mentoring was adopted by women who didn’t have equal access to men-only groups at work. Now, because autism parents are often denied access to autism decision-making bodies, mentoring makes us a more powerful, informed group overall.
Much expertise is required to combat autism. The autism world is a large, opinionated, often fractious circus tent, but that means everyone under it has something to share. Health care, insurance, schooling, medications, behavioral therapy, language development, recreational activities and government services are just some of the issues we must learn about.
Being the parent of an autistic child is “boot camp” for dealing with powerful organizations. Perhaps you can learn to advise others on negotiating “the system.” Or if confrontation is not your forte, you might have other skills suitable for mentoring. If you’re a football coach, you know a little about motor planning and could teach an autism football day. Or maybe you’re a baker who’s never known a “special ed” child until your own, but you can make sugar-free cake icing. I’ve swapped medication info with a neuropharmacologist dad. And I know a mom who earned an advanced autism degree and became a school inclusion expert.
Pointing Parents To The Lifeboats
Mentoring can be as wide or narrow as the mentor wants. Many mentors have a no-holds-barred approach to mentoring, and are open to discussing anything. But it’s fine for a mentor to offer information only in their areas of competency, or to simply refer a parent to trusted doctors.
While mentoring is often informal between parents, some autism groups like Talk About Curing Autism (TACA) of Costa Mesa, California, have set up mentoring programs for families. The process can take place online, in person or over the phone. Moira is the mother of two children, typical daughter Culzean, and son Vico, who has autism. She and husband Michael, also a mentor, have been autism activists for 11 years and she is a TACA chapter founder and mentor. Like so many others, their son wasn’t diagnosed by a doctor, but by a state agency after his preschool told her he needed help. After that visit, Moira says, “We were sent out empty-handed to the parking lot, with no road map, no referral, nothing. My husband said, isn’t there some project manager or autism expert who will help us? I said, I think it’s us. That scared the crap out of me.” She soon learned that autism experts “had their own agenda on what they could or couldn’t offer. That spurred me to connect with other parents.” Also, her own family members “couldn’t understand what I was doing. There was a certain level of denial,” a completely common reaction in relatives.
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She then found the joy of sharing successes with other families. “Like the first time he lied, how important that is. All my autism moms and dads got it—woo, hoo, he lied!” Vico’s amazing progress lets him fully participate in their family, even travelling cross-country. Although she doesn’t have a “home run recovery success story,” she thinks his more typical outcome strengthens her mentoring. “Enjoy him and his childhood” is a lesson she shares with others. Moira does find it frustrating when new parents ignore some of her advice. “I try to be more Zen about it,” she says. “Autism is like the Titanic. There are only so many lifeboats, and we can’t drag people, we can only point them to the lifeboats. There is another family right behind them who will walk toward the lifeboat.”
Like Moira, I find dietary intervention the stickiest part of mentoring. It’s fairly easy as opposed to most therapies, and many families report significant benefits, according to Autism Research Institute data. When a child’s medical and developmental history shows me he’d probably benefit, and the lab tests come back with milk allergies, having a parent refuse to eliminate dairy products is sad, especially when there are finally good substitutes for everything (even ice cream!). Parents sometimes promise they’ll try it, then later say they did it for three weeks and “it didn’t work.” Some mentors I know won’t advise a parent unless they do exactly what the mentor says. But I can’t turn away a parent who wants help, even if they only want part of it.
4 Ways Mentors Can Help
1) There’s no official medical treatment for autism—mentors can share what works.
2) There are no trustworthy standards for treatment or services from schools, state agencies and insurance companies—mentors can help guide parents’ choices.
3) Autism creates desperation due to the stresses of caretaking, financial burdens and social abandonment—mentors can help prevent misery.
4) Children with autism are often misunderstood—mentors can help to form an understanding community for our kids and ourselves.
Setting Boundaries
Mentors have to be prepared to put in time. If you are going on vacation or unavailable for a few days, it’s best to let the parent know. Fortunately, people need more support in the beginning and the time commitment can either taper off or turn to happier subjects if you remain in contact. Mentoring also calls for a few boundaries and responsibilities: Most mentors inform parents they are not giving medical or legal advice.
Mentors should keep privacy in mind, too. I don’t use a family’s name in conversation with others without having gotten permission to do so. Also, marital woes being a guaranteed part of the diagnosis for most, I reassure families it is normal, but should be addressed by a professional. For those patents who are going through divorce, I’ll share legal and child-rearing ideas if they wish, having experienced a divorce and happy remarriage myself. To deal with autism alone is a dire situation for parents and their children, so sharing hope along with practical tips is important.
Having been in touch with people from all over the world, I’ve learned that mentoring calls for cultural and financial sensitivity. For instance, some Indian families may have a hard time eliminating dairy, since the cow is sacred in Hinduism and vegetarianism makes dairy a staple. My Afghan family needed more support, but they feared going home because their daughter might be stoned to death. I helped a Polish housecleaner who managed to get a lawyer and won a fine intensive treatment program for her son. And I’ve pointed low-income Americans toward medical scholarships and legal advice. All these families exceeded their abilities while managing their limitations—the best outcome a mentor can get.
People I’ve mentored have done remarkable things. One set up an organization in her state after her child received a very late diagnosis. Others also have started groups, written articles or done radio. And they act on what they learn—I’ve been at times a top referral source for doctors, behavioral agencies and lawyers. Now, my own son is suggesting medications, social tips, diet and books for the “quirky” kids he meets, and the ones I mentor. He shows a real aptitude for it, and I’m so grateful he’s internalized the knowledge and can now help others.
Just recently, we loaded up our outdoor patio table with chipotle hummus, Afghan spinach bolani with mint garlic cheese, pita and GF/CF pizza for a check-in visit with our Indian friends. Six months after intensive treatment started, their son is now talking, accepting new foods and attending a regular preschool with an aide. That’s good progress for a child on his developmental path, I tell the parents. My son even sauntered off and returned with a social skills book he gave the family. And that’s the beauty of mentoring. Most people think that a child is the greatest legacy they’ll leave behind. When your child has autism, you may stop believing that. But by mentoring, you create a far greater legacy for you and your child: giving others a better life as well.
From Age of Autism