In a Facebook exchange about three, four, and five year olds still in diapers, one of my friends reminded commenters that some children who are having difficulties potty training may have other challenges. Kids with autism are often in diapers for a long, long time.
That friend is Michelle O’Neil, a book author, former nurse, and mother of two from Cleveland, Ohio. Michelle O’Neil’s daughter has autism.
The author of a tremendous memoir called Daughter of the Drunk at the Bar, Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has also written for Literary Mama (which is where we first met on-line. I was the Creative Nonfiction Editor of Literary Mama when one of Michelle’s essays was published) and she blogs about kids with autism, family and the day-to-day at Full-Soul-Ahead.
According to the CDC, at least 1 in every 36 children now has autism. That’s a catastrophic, devastating, epidemic number. Yet parents who don’t have children on the spectrum often have no idea what it’s like to live with kids with autism.
Riley is 18 now.
Six years ago, I asked Michelle O’Neil to share her experience with me, so I could educate myself and other parents of neurotypical children about the reality of living with a child on the spectrum.
JM: How old is your daughter and when did you realize she was on the spectrum?
MO’N: My daughter is 12 and we knew something was up by the time she was about 18 months old. Prior to that we were just resigned to the fact that she was a “fussy baby.” She was diagnosed initially with Sensory Processing Disorder at three years old and then at five got the official Asperger’s diagnosis.
JM: Does autism run in your family? Do you have any explanation for what happened to her?
MO’N: My husband has an uncle who is undiagnosed but clearly somewhere on the spectrum. We believe that she had a genetic susceptibility to autism, and that environmental factors pulled the trigger. Namely over-vaccination, of both mom and child.
JM: Can you describe a typical day with your children?
MO’N: A typical day now is very different than a typical day was a few years ago. She used to be completely disregulated. My daughter has made huge improvements over the years with bio-medical interventions, therapies (many alternative and not FDA approved), and medication. She has a great deal of anxiety and the smallest most unpredictable things used to set her off. When she reached this point of no return, there would be horrendous screaming and meltdowns. There was no reasoning with her. No talking her out of it. No punishing her into better behavior. Our family walked on eggshells and it was very difficult for a long time. This was not behavior she could control. This was not a child being a brat though that is what it looked like to people unfamiliar with autism. This was an overloaded neurological system, a brain in rigid vapor lock. Imagine your very worst hangover–I believe this is how she felt, every day of her life. She was polluted with environmental toxins. She had no ability to cope.
We have worked very hard to get her body healthy. We have chelated for heavy metals. We avoid chemicals and preservatives in our food. We eat organic almost exclusively. We limit scented products in our home. She was a great responder to methylated B-12 shots which helped her body eliminate toxins. She has participated in many therapies including occupational therapy, Berard Auditory Training which improved her balance and helped reduce her extreme sensitivity to sound. She has taken therapeutic dance, martial arts, and horseback lessons. She received music therapy for years.
In addition to the MB-12 shots, we’ve done homeopathics, Chinese medicine, chiropractic, cranial sacral and a slew of other things to help her body calm down. She currently takes an SSRI medication which has helped her a lot. We pulled her from school three years ago when we found out she was spending a good portion of her time there isolated and crying in a sensory room.
All that being said, she is doing fantastic now, and our days look much like a typical family’s day.
She has only had one or two meltdowns in the last two years.
They used to be multiple times a day.
We are not involved in as many activities as most American families with children because she needs her down time, but I think that is good for all of us. Her autism gives us an excuse to take life a little slower and we like it that way.
JM: You’ve told me that sometimes it’s challenging when you are out in public and people judge your daughter’s behavior without knowing about her disability. I’d love to hear more about that.
MO’N: After a certain age, say three, people are less forgiving of a child having a meltdown in public. Particularly a child who looks typical. Autism is hard because it is often an invisible disability. My daughter could always talk. She could look at you. When she wasn’t upset, she was very charming and delightful with her big vocabulary. So to see a child like her suddenly lose it because a bee flew too close to her ear or because the children at a party sang “Happy Birthday” too loud, or because the sun was too bright, or the room smelled funny or a baby cried, it looked strange to them. When she was little we got a lot of eye rolls. A lot of glances exchanged between other parents. It was hard, because we were knocking ourselves out to parent this child, and trying to be a good parent to her baby brother, and it was exhausting… to be judged on top of it, just sunk my heart sometimes.
JM: What do you wish mom and dads who do not have a child on the spectrum knew about autism?
MO’N: I wish they knew how much it meant for a child with autism to be included once in a while. It seems like many typical parents fear if they give an inch, we’ll take a mile. Like, they are afraid we’ll need more than they are up for, so they don’t “get involved.” My daughter has typical friends who frankly live in a different universe (just up the street). But they include her a couple of times a year, inviting her to birthday parties or to go trick-or-treating. It means the world to my child. She doesn’t sit around fretting that she barely sees them. It doesn’t even occur to her. Her idea of friendship is different than most girls her age. She wouldn’t want weekly play dates. It’s not her thing and it would be too much. She’s happy. She considers these girls her friends, which they are. They are awesome kids. We’re not going to glob onto you and ask for too much. Don’t be afraid of knowing our kids.They are part of your community and they have gifts to bring too. Most of the time when children are educated about my daughter’s challenges, they show up big with compassion and support and love. Knowing my daughter is an opportunity for your kids to know their best selves.
JM: Do you feel like you get the support you need in your community?
MO’N: People don’t always know how to support you but it seems if you give them opportunities they show up. When my daughter was younger and had no friends, we started a Circle of Friends group for her, which met monthly at our house. We did an activity and some social skills exercises and had a snack. Every kid we invited showed and even some extras came. Our community also raised thousands of dollars in a very short time to pay for our daughter’s service dog a few years ago when we put out a call for help. Asking for help is the hard part. And it is tricky to ask for help when you have a child you feel you can’t leave because she will inevitably meltdown and perhaps be misunderstood. What parents need is respite but how do you ask for a baby-sitting trade under these circumstances? There are few people I trust to leave my child with.
We have also received great support from the homeschool community. Homeschoolers seem to welcome and value difference more than mainstream society, and many homeschoolers are frankly in the same boat whether their kids are officially diagnosed or not.
JM: How can teachers, politicians, and others better support parents with autistic children?
MO’N: Teachers really are the ones in the trenches. Ask any seasoned teacher if it’s just better diagnosing or if way more children have huge issues and they will tell you our children are suffering in greater numbers than ever before. There are many amazing teachers working with kids with autism and no one deserves more respect. I would tell teachers in general, if they don’t have love in their hearts for kids with autism, please don’t attempt to teach them. Love is the key ingredient. Tough to mandate but without it teaching a kid with autism is a figurative bloodbath.
I would tell politicians to quit taking advice and money from the pharmaceutical industry. Stop the over-vaccinating of our children. Give autism families money for respite.
JM: Are you worried about your daughter’s future? What will happen when you and your husband are too old to care for her?
MO’N: I honestly can’t predict much about my daughter’s future. I could never have imagined just a few years ago how far she would have come today. Her progress blows me away. I have no way of knowing what she will be capable of. In many ways it appears she will be able to live independently. We keep working toward that goal, but at 12 it is too soon to know. I know parents of kids with autism who share a totally against-nature secret thought that it might be better if their child dies before they do. The thought of what might happen to them when they are gone is so frightening.
In other cases, autism sibs will be called on to manage care. The siblings are truly the unsung heroes of the autism epidemic. What these kids deal with and the amazing big hearts just full of compassion and depth that I see in so many of them. It gives me hope for the world.
JM: What are some books you recommend about autism?
MO’N: Dr. Ross Green’s The Explosive Child. Best book ever. The premise is: a child does well when they can, and when they can’t we need to give them support. No child wakes up in the morning and decides, today I will act like a brat. Another gem in Green’s book is “Don’t match a child’s inflexibility with your own.” It’s a wonderful book, not just for autism.
Another book is Dr. Kenneth Bock’s Healing the New Childhood Epidemics, which explains that autism (and ADHD, asthma, and allergies) is not a fixed state, but a physiological condition which can be treated. In some cases kids with autism can be healed.
Son Rise by Barry Neal Kaufman is a good start, for parents of newly diagnosed kids with autism. It is about meeting your child exactly where they are, loving and accepting them, while working with them and hoping for progress.
JM: Do you have advice for parents who have just gotten an autism diagnosis from a medical professional? Besides panic, what’s their best course of action?
MO’N: Breathe. Keep an open mind. Know that there is a lot you can do to help your child and other kids with autism. Go with your own gut, and make decisions from a place of power and not a place of fear. Weigh any and all advice carefully but understand you are the ultimate authority and advocate for your child. This is a sacred journey you are on and it’s a marathon. Pace yourself.
Last updated: June 14, 2018