The top 12 things parents of kids on the spectrum want you to know
Parents raising typically-developing children have no idea how what it can be like raising a child on the autism spectrum. The problem is not our autistic children--it is the ignorance of society when it comes to understanding and supporting that different ways our children learn, communicate, and experience the physical/ sensory world that causes frustration and anxiety. Too often, even well-meaning relative makes things worse, not better, and hinder, rather than help, because they Just. Don't. Get. It.
What follows my list of things I wish those people knew.
1. Please play nice.
It’s simple: An empathetic listener with an understanding of autism and of the effort it takes to raise a child with autism is rare—so rare that all of us parents can share with you the names of just one or two autism angels who have made us feel stronger, feel heard and understood, feel supported, and feel less alone in a journey that often seems without end. The effort is from trying to support a child who learns differently but when you try to tell that to people, they look at you like you have a third eye and say (or imply) that you, actually, are the problem. You enable too much for him. Gah!
As a friend, relative, neighbour, teacher, you can give parents strength for the next leg of the journey. The power of your positive words and meaningful support will recharge our Super-Momma (or Poppa) powers until the next time…
2. Having a child with ASD can lead to depression.
Reasons vary, but mothers raising children on the spectrum are more prone to depression and anxiety than parents raising typical children. It could be a genetic predisposition… then again, consider the reality of raising a child on the spectrum: the constant concern about the child’s future, about his social isolation and bullying and how he’ll feel when he becomes awareness of his challenges.
Duh. These things make mothers unhappy.
Add to that the fact that parents have to fight tooth and nail for every bit of service their child gets, and whatever they get, we know it is not enough.
In fact, one study out of the University of North Carolina suggests maternal depression in these families stems from moms feeling they can never do enough for their child. Most moms I’ve met are confused and frustrated—they feel that there is something they have missed...a personal oversight that has caused them to miss plugging their child in to the right services. They had the notion that once he was diagnosed, services would fall into place to support his development.
Reality check: there are few services. The service terms you get are short. Funding sources are scarce…and you, mom, are doing a fantastic job of pulling together what you can.
Whatever the reason, many of the moms you speak with are battling depression, even if they put on a brave front. Please tell them they’re doing an amazing job and give them a break if and when you can.
3. Waitlists, waitlists, waitlists. I want to help my child now!
Everywhere families turn to request some service, there are lengthy waitlists. It doesn’t make sense: our children are clearly stuck in many areas and buddy—we could use some help here.
Our kid’s speech may be delayed or difficult to understand; he can be super clumsy and unable to dress himself, toilet himself, or play with peers. He screams going over the slightest of speed bumps and won’t eat anything but plain boiled pasta. Her tantrums limit the places and activities the whole family can engage in.
The doctor ‘tsk tsks’ and tells mom we need to be consistent in our parenting. ‘Don’t baby him’. Teachers ask us what’s going on at home when we describe our challenges. ‘I don’t see any of that here,’ they say.
What the hell? Why isn’t anyone taking this seriously?
As a parent raising this child, I don’t want to spin my wheels while I wait 12 months, two years, four years to be eligible for some help. I am desperate, anxious, driven to find another way. I know, on an organic level, that I must help my child now. But how?
There’s no fast track for service, because meaningful, day-in, day-out support does not exist unless you’ve got lots of cash. The good news is that you’re the top expert on your kid and you can learn how to help him soar.
4. We cannot afford to give our child all of the therapy and support we know he needs.
It often surprises people who don’t have an autistic child to know how few government-funded supports or services for our children. As parents, we often believe that once we have the diagnosis, services will be put in place to help our child be the best he can be. We soon learn otherwise.
In fact, unless parents actively pursue therapies, nothing comes to them. Even if you push as hard as you can, there is little service, and even less for those who have higher cognitive levels. The thing is, as parents, we often see improvement when our children do get a course of therapy. This leaves us feeling frustrated. We have the sense that our kids would benefit from receiving help every day, and for years in order to achieve their highest potential.
They don’t get it.
We can’t afford it.
5. We are broke.
Even though we can’t afford to give our children all they need, we spend to the extent that we can. It is financially draining.
The cost of assessments, tutors, speech therapy, occupational therapy, special diets, social opportunities and supporting their special interests can really drain a family's bank account. Speech therapy and occupational therapy, for example, each cost upwards of $125 an hour. We see our children improve with these supports, so we do what we can. It is still not nearly enough.
Finances falter for other reasons, too. Because supporting a child on the spectrum can be so demanding of time and attention, the decision to have one parent stop working is often made.
Often, that parent is the mother, who then gives up a career she worked hard for and enjoyed. This means the family is dealing with their particular mix of Asperger-challenges as financial strain sets in. The family now has to adjust to one income to supply all of their needs.
Similarly, those moms who remain in their career may not advance as quickly as their colleagues with no children or with typical children. This may be because parents are reluctant to take on additional responsibilities at work given the demands of home, or may not be able to take on a role that involves more hours or travel time. Bosses may be reluctant to promote staff who are frequently called away to tend to personal issues.
6. A smack will not cure my child's Autism.
It’s a common scenario: kid throws himself on the ground in the middle of the food court. He may curse at his mother. When he hits her, someone can be heard to say, ‘What that child needs is a good spanking.”
Believe me, people: if I thought discipline could cure autism-related behaviors, this pacifist might have planted a slap or two in the past 20 years.
The truth is, children on the spectrum may melt down for many different reasons: they’re easily overwhelmed and have a low tolerance for frustration. They have challenges identifying their emotions, and knowing how to deal with them. Fatigue, hunger, transition, lights, noise, crowds, excitement can also be the triggers. To complicate matters, their socio-emotional age often lags behind their biological age by about one-third. As a result, they may respond in such immature ways as disappointment, anger, or boredom loom.
I want you to know that managing meltdowns is emotionally draining on parents. It can be frightening, embarrassing, and overwhelming—especially for new parents or for parents experiencing these behaviors for the first time. What we don’t need are the harsh judgments of strangers who are ignorant of our challenges. We need what you can offer: a connection to services that can help our child to manage his emotions, and your active and sympathetic listening.
7. Autism impacts the entire family.
Regardless of where a child is on the spectrum, the diagnosis affects both the immediate and extended family. Often, a child’s need for rigid routines, difficulties with transitions, meltdowns, and life skill challenges can dictate how the day unfolds for the whole family. Autism-related issues such as these must be considered when planning family outings, visiting relatives, or getting ready for school.
Even highly articulate, bright children with autism can be extremely slow to cycle through the steps of their morning routines, their homework, and their chores, and may need parental coaching to get through all of it. This can be frustrating and can leave other family members feeling as if they are taking a back seat to the child with autism.
The family may not get out to visit relatives very often—perhaps because we are not invited, and perhaps because our child’s behaviors can be worse in unfamiliar settings. Grandparents may be less willing to babysit to give parents a break, or may be unable to manage the needs of the child with autism.
8. Autism can have a profound impact on sibling relationships.
We all know that sibling rivalry can be stressful, but when autism is in the mix, it can take this to a whole new level!
Siblings can become resentful of the amount of time and resources that are given to the child on the spectrum. A child with autism often needs a great deal of his mother and father’s time. The resentment that some siblings feel as a result is intense, as is the guilt that parents harbor over the uneven distribution of time and attention.
As well, siblings can become very angry at their ASD sibling for upsetting mom, sometimes for physical aggression toward family members, or for always being angry or anxious and therefore getting more of mom or dad’s attention.
There are also the frequent trips to doctors and other supportive professionals—all of which cut in to family resources and free time. Though many typical siblings love their sibling on the spectrum and are great supports for them, some are embarrassed by their sibling, and others are angry that autism dominates the family dynamic. It can contribute to a difficult family situation.
9. Guilt! It is tough to raise a child who can't or won't give or receive affection.
The social deficits are a core challenge in autism across the spectrum. It is reasonable that new parents expect they’ll have a cuddly baby and toddler, and an affectionate and loving child. We imagine warm and close connections with our children. Here’s the thing, though: there’s a good chance you won’t get lovin’ like that if you have a child on the spectrum.
Picture this: hugging a child who stiffens or recoils at your touch, or says bluntly: ‘Don’t touch me,’ when you pat his arm, or cringes in disgust when you kiss his cheek.
Not all children with ASD rebuff physical affection or fail to give it, but many do. Parents learn to accept and adjust to their child’s preference, but it is a tough road. Our instincts overwhelmingly direct us to hug, to touch, to caress and to kiss. For many of us, the best we can hope for is to sit close to our child and hope he moves toward us. For others, those sweet and blessed moments when he finally and unexpectedly hugs us—too tightly, maybe/or too limply by typical standards—melt away all of the hurt and speak volumes for the child’s level of comfort and trust in us.
10. Raising a child with autism may be hard on a marriage
Often, the rigid routine and behaviors of the child can make it difficult for parents to find caregivers. This is tough, because if anyone needs a break, its parents raising a high needs child with autism.
If there are family outings, one parent may have to stay home with the child if he is unable to attend. The often-extreme resistance to bedtime or night time anxieties can make everyone very tired, and one parent stays up trying to calm or settle the child with ASD. A parent may even have to fall asleep in the child’s bed to settle him. This means couples do not go to bed at the same time. It becomes difficult for couples to find alone time.
As well, there may be one parent who doesn’t seem to understand the ASD child, and is intolerant of things like his poor social skills, motor clumsiness, slow transitions or meltdowns. This parent and child can be in constant conflict, with the other parent being forced to run interference and acts as a referee. This, too, can impact the intimacy between the couple: it is hard to be romantic with someone who is not kind to your child. Trust me on this one: yelling at my kid for forgetting to brush his teeth is the opposite of foreplay.
While early information that up to 80% of marriages end in divorce when there is a child on the spectrum are now being disputed, there is no doubt that the financial, social, and emotional demands of raising such a child can take its toll on a relationship.
11. We are afraid of alienating school staff.
In order to raise a child on the spectrum, parents learn pretty quickly that they have to advocate for their child. Here’s the problem: we’re afraid of you.
Afraid that we will push too hard, have too much of an edge to our voice, get angry or upset or ask for something you think is unreasonable …and then…what? And then we are afraid it will impact your relationship with our child. Let me spell it out bluntly.
Many parents think if they offend the professionals, it’s going to impact how their child is treated and the services that child receives. They are most afraid of offending educators or school administrators, because school is already difficult for so many children on the spectrum. Most kids don’t socialize with our children; many are bullied. We most certainly need to feel the teacher likes our kid and so, it leaves many parents agreeing to less than they know they need, or to agreeing a child’s behavior was naughty when really…he was communicating his great distress in being so poorly understood.
12. It is exhausting raising a child on the spectrum
(and not because of the diagnosis—because of the ignorance and rigidity of those who don’t understand Autism, but who love to tell you what you’re doing wrong):
You’ve heard this from me before. Autism is a pervasive development disorder. This means the child may be impacted across many areas of functioning, including social interaction, communication, behavior, anxiety and life skills.
Unlike typical children who need to be taught the basics—toileting, dressing, speaking, their alphabet—it seems like children on the spectrum need to be taught everything… we are talking about things like how to wipe your bottom, how to blow your nose, how to pull on your boots, how to use a fork. We may spend endless hours over many years trying to teach them the simplest of tasks: pulling on socks, selecting clothing, brushing teeth, doing a chore, washing hair. Once he is off to school, there are often urgent calls to deal with behaviors, and once home, he may be so overwhelmed from holding it together all day that he has a meltdown when he walks through the door. Mealtime is tough because he’s a picky eater, eats too little, eats too much, is a messy eater/can’t use utensils.
He has homework and it takes several hours to do it—if he’ll do it at all. Parents may need to oversee the homework, re-teach lessons, motivate and inspire through every question to keep the child on track. Please keep in mind I’m not talking just talking about profound, non-verbal autism here—I am referring most definitely to those typical-looking, bright, high functioning kids as well.
In all of these challenges, our children would likely benefit from expert instruction in consideration of their various learning, physical or sensory challenges. They’d certainly do better with volumes of work more suited to their slower processing speed, and curriculum geared to their strengths and interests.
The task falls to parents to become instant experts, all the while maintaining patience and deflecting the disapproving glares and comments based on the intense support they give.
You can imagine that at the end of the day, we are tired!
When we finally fall into bed, sleep may not come easily. After all, our child with autism often has a sleep disorder, can’t settle down until midnight, may scramble into our bed at 2 a.m. or scream with night terrors. If we do have the comfort of our bed, rather than fall asleep, we may stare at the ceiling, gripped with anxiety and wondering what on earth will become of our child.
Then finally, finally…we fall asleep. We wake up at 6 a.m. and it starts all over again.