If you have met one person with autism, you have met one person with autism. That’s because children and adults on the autism spectrum are very different from one another. There is no one correct road map to follow when raising, teaching and loving them.
We have all seen those heartwarming videos of a child with autism speaking his first words after years of silence, bonding with a pet or a special friend, or celebrating the achievement of a task triumphantly. We are also fortunate to now have a number of series like Netflix’s “Atypical,” ABC’s “The Good Doctor,” and even “Sesame Street,” which feature characters with autism and shed light on what life is like for individuals on the spectrum.
As wonderful as all of this is, there is another side of autism that remains cloaked behind the scenes ― the reality of what it is like to be a parent of a child on the spectrum.
Being a mom of a child with autism spectrum disorder has its own challenges, its own rewards, its own misunderstandings, its own joy, and its own grief. And talking about it, writing about it, being honest about it, and owning it — that matters. It matters for the parents who are struggling, who feel lonely, who are misunderstood every single time they speak with doctors and teachers and therapists.
But even more, it matters for the children with autism diagnoses themselves. Children need to have a parent, autism or not, who is trying to understand, trying to learn, and trying to help them be uniquely them.
A normally developed parent and a child with autism need to be on the same team. Moreover, normally developed parents of children with autism need to be able to identify other parents in the same circumstances, with the same needs. An autism mom is exactly what a child with autism needs.
Mom of a child with autism may feel tired from the many hard years of fighting and advocating for her child, with many more years to go. She may feel frightened and uncertain of what the future holds for her child. She may feel grief for all the things the child has missed out on, and all the things the child may never experience.
She may feel alone having carried most, if not all, of this burden on her own. She may feel disappointed for how little she is able to do for her child, and for how short they fall in providing better for individuals with intellectual disabilities.
At the same time, she may feel resentful and frustrated for all that she has to do for her child with autism because maybe the child cannot do for himself and there is no one else that will do it for him, or only her. She may feel ashamed for the times that she fails to understand her child and end up making him feel worse instead of better as any mother is desperate to do.
She may question everything she has done up to this point, and how she is expected to know what to do for her child with autism in the future. She may feel fear of judgment in exposing these feelings, and that she will face harsh criticism for not rejoicing all of the beautiful things that also come with loving and caring for someone on the spectrum, or that she is not grateful enough for what he can do, and what we do have. She may cry secretly and worry that she is not doing enough.
And a mom of autism feels guilty for all of the above. On some days, behind the scenes of the warm and fuzzy videos and television shows, that’s what it really feels like to be an autism mom.
“There is a boy who has been diagnosed with autism. He is fifteen. He was about two and a half years old when he was diagnosed. Parenting a child with autism is challenging at times, but also very rewarding. They have had a lot of interesting experiences over the years and gotten to know a lot of others who are also a part of the autism community. So many of their stories and experiences are similar. The mom recently decided to illustrate some of the most common and repeated scenarios she has heard about from others in the autism community and/or experienced herself. “
If an autism mom could wear a t-shirt every day explaining the bags under her eyes, here is what it would say:
- I’m tired. I’m always tired. My kids don’t sleep all night. Never have. Never will. I have to check on them to make sure they are not eating everything in the refrigerator or painting another room. I sleep with one eye open. Seriously. It’s a thing.
- One does not grow out of autism. It is a life-long condition. You cannot make a fish a duck. A fish will always be a fish. A person with autism will always have autism unless someone comes up with a cure.
- Autism is a diagnosis. It is not who my child is. I know I wax dramatic about how it affects us, and while I am not being hyperbolic, I do hope you will see past my sons’ diagnoses and see them as the clever, fascinating, funny people they are.
- Autism is different in every person.
- Autism is isolating for many families. It is not easy to find a babysitter. My husband and I rarely get out on a date by ourselves. If we do, it is maybe once a year on our anniversary, and even then, it is not on an actual day due to trying to make arrangements for the twins.
- When you can’t accept every invitation, friends drift away and families avoid staying in touch. By the time the teen years arrive, there is no network of support. It is a lonely road for far too many.
- While some autism symptoms may be reduced by special diets, it is not a cure. The diets don’t work for all people with autism.
- Don’t underestimate the power of a battle-fatigued Mama. Ours is a fierce love. We love our children with autism as much as you love your typical child. We will fight to the end of ourselves to get what they need when they need it.
- Don’t pity us. Don’t admire us. But please do help us. We need friends, a cup of coffee with an ally, a chat on the phone, or a visit on the front porch.
- We are stronger than we ever imagined we could be. We like that about ourselves, but even strong warriors get tired and discouraged and need someone to help them keep going.
Things That Almost Every Autism Moms Live Through
The most freeing moment of the journey for them was when they stopped worrying about public appearance. The child with autism needs for moms to be 100% in tune with them and what they are experiencing, not worried about how they are perceived.
If you put a PlayStation game into an Xbox, would it work? Of course not. So does that mean the Xbox is broken? No. The same thing applies to a child with autism. Just because they don’t learn the way ‘typical’ children do doesn’t mean there is something wrong with them. It means that people as parents, caregivers, friends, neighbors, and teachers need to find different ways to try and make a connection.
There are some invisible medical issues of autism right from the start. In most cases, autism moms have no idea that gastrointestinal dysfunction, including constipation, acid reflux, inflammation, and pain, could dramatically affect their child’s sleep patterns, mood, irritability, aggression, attention, and even communication. The child mostly has to power through those problems all by himself on a daily basis, and it breaks mom’s heart that they never suspected the cause of many of struggles of the child.
Emotional support is very important. It always has been invaluable to have other parents who are going through the same thing as they are, to call them up and say “I can’t believe this is happening to me today.” Because of the rest of the community, the things that happen to them, they are really not the norm.
Sometimes, they may get really sad when they think of the ‘normal’ childhood their kids have missed. Those mothers have no tolerance for parents who complain about having to drive their kids to ballet and soccer and all of their other activities. They only want to be that mom, and they always envisioned their life would be that way. But after a period of time, they realize how blessed they are to avoid dealing with drinking, drugs, promiscuousness, social-media bullying and all the other typical teenager problems.
After baseline medical needs are met and moms figure out how to deal with the ‘every day,’ it is recommended that parents pay particular attention to the areas of communication, self-help and socially appropriate skills. A child who has the high academic ability, but poor communication skills, hygiene or a proclivity to hurt others will greatly limit their opportunities.
Autism moms should try not to read too much into things people say to them. They will find themselves annoyed with positive comments because they seem to minimize the magnitude of the child’s challenges. They will also be annoyed by negative comments that don’t recognize the magnitude of the child’s progress.
Seeking out a mentor would be a great idea for autism moms. It has been helpful to have had a mentor or someone who has already walked the road that moms face. Initially, the diagnosis itself is overwhelming. Just as a driver on a road trip stops at visitor centers for information, they may find themselves searching for directions on how to not only cope with the future as a primary caregiver but also how to fund the child’s immediate and future medical expenses and care.
Keep in mind that when you change your expectations, the world will grow. In most cases, autism moms wish they knew that autism just means different, not less. Instead of baseball games in elementary school, they would have sensory integration programs. They wish they knew then that it will be OK — some days will be hard, some days will be beautiful and at the end of each of them when they tuck their children with autism son into bed, the most important thing they can do is make sure the child knows he/she is loved.
Having a child on the autism spectrum can be like a reboot to family life. It is exciting and challenging for the families who have someone with autism because each day holds a new adventure. Despite the challenges of having a child on the spectrum, their life is perfectly complete. The child challenges the mother to be a better parent every single day.
Autism moms should remember to live their own lives and take care of themselves. Take up yoga. Kiss their husband. Create beautiful bowls out of clay. Do whatever it is that lights them up inside — all the things that made them feel whole and alive, and good before autism darkened their doorstep.
This is a great time to mother a child with autism. Mothers are most grateful that they live in the times that they do. So much new information has been discovered about autism spectrum disorder. They live in the age of the internet and they can easily connect with another autism mom who lives several states or even countries over and talk about their shared experiences. They are grateful to have things like iPads that not only help their son communicate but also gives them a chance to share a moment while watching one of his favorite YouTube clips.
Your journey may be different, but your goal is the same. What autism moms want for their children with autism is the same thing that everybody else wants for their kids. It may take them a little longer to get that, it may take us more intervention, but in the end, health and happiness are what everyone wants for their children.