It might sound harsh, but taking care of autistic children isn’t the same as caring for people outside of the spectrum. Their condition often comes bundled with a lot of other factors to accommodate, such as special diets, vulnerability to certain stimuli, epileptic risks, and impulsiveness – each requiring its own unique accommodation, which can take a heavy toll on caregivers.
Their developmental milestones can also take a little longer for them to reach compared to most neurotypical individuals. Having to handle them – on top of a child’s baseline needs – can leave parents of autistic children miserable and drained.
Raising a child on the autism spectrum is just as valid as raising children with other disabilities – more factors have to be considered for both cases, so don’t think less of yourself. Focus on what you can improve now – avoid dwelling on how things might be in the future.
Make sure you have other hobbies if only to remind yourself you aren’t solely a caretaker. Find a safe routine to fall back on, but don’t depend on it. Lastly, consider picking up meditation to calm down and breathe.
Raising an autistic child can be frustrating, especially if you don’t feel that you fully understand them. That doesn’t mean you should stop trying – what matters most is that you do your best.
My Autistic Child Makes Me Miserable (How to Cope)
1. Know That it Isn’t All in Your Head
Raising children on the autism spectrum is difficult for anyone – especially people who lack the proper training and information to navigate the condition.
A lot of parents struggle early on, chalking these up as personal failings. They might even start blaming themselves for their performance.
This blame isn’t constructive. Most importantly though, it’s totally misplaced.
The truth of the matter is that most parents tending to children with some form of disability – be it physiological or neurological – have a harder time figuring out the best way to care for their kids when compared to someone raising children without such conditions to accommodate.
These extra needs may require something neither parent encountered. Parents will start from scratch here, doing their best in a situation that often demands way too much this early on. It’s normal to be caught off guard – even among people who seriously prepped for the situation.
Physical vs Cognitive Disabilities
Not all conditions are equal, even if the demands and expenditures seem similar at a glance.
Physical disabilities can get expensive and cumbersome but are often relatively straightforward with what they demand. As an example, a child who couldn’t fully use their legs could get around in a wheelchair, ramps in the household, or other mobility assisting tools.
Disabilities that are cognitive in nature tend to have other factors bundled into the situation. They require a lot more scrutiny and patience. It’s easy to associate a steep incline as a problem for someone in a wheelchair, but you might not, for instance, respond to a blaring car alarm giving your autistic child sensory overload until they’re already under a lot of duress.
Cognitive disabilities don’t just add new demands, but – for lack of a better term – alter or remove certain “normal” interactions people often take for granted.
A parent would do anything to see their child smile, but what if their child wasn’t the smiling type?
What if the child expressed their love in ways that didn’t quite reach their parent’s perception or vice versa? Most people with autism are very literal, and people who communicate with others through banter or in-jokes might find it tough to connect with people on the spectrum.
Their love language might not align with yours, and sadly this could lead you to feel that they’re more of an obligation than a child during particularly trying times. Having these feelings won’t make you any less of a parent – this is just an intrusive thought that’ll pass in time.
Make no mistake, caring for someone with a disability is more challenging than caring for someone without one. Something new has to be accommodated, and you’re working off a few unknowns.
Autistic children demand a bit more from parents and acknowledging that is just an objective fact – not a personal failing.
2. Don’t Dwell on What-Ifs, Focus on the Now!
Looking at your child as they are, it’s easy to worry about how they’ll manage things as an adult. Overthinking is normal for parents, but shouldn’t be entertained to the point of self-sabotage.
Does your family have problems now? Focus on them.
Work off these challenges day by day, then keep going until you clear that backlog. The future isn’t your problem now, no matter how bleak it might seem at times.
At best, your autistic child will grow into someone that doesn’t have to worry about that. At the very worst, they’ll still struggle here – but worrying about a problem won’t solve it, and you’ll just end up putting yourself through a bad situation twice.
You already have a lot on your plate here – no need to add more to that!
Worry is a big source of misery. While you can’t fully detach yourself from those feelings, you can direct your energy to more productive questions.
Here’s an example:
Let’s say your child had a hard time talking to people in school.
Your immediate problem is how to make those interactions easier for your child. Don’t waste your time worrying about how they’ll deal with their coworkers in the future.
Make sure that your goals are realistic to achieve now. Look into what you can prepare for within the next month or so – thinking about anything beyond that will just bog you down with worries!
3. Avoid Welding Yourself to the Role of Caregiver
It’s a common sentiment that parents are never off the clock, but parenting shouldn’t be all you have. Parenting is a responsibility, not an obligation, but some days are tougher than others.
A lot of parents with autistic children find solace in work or other activities outside their home, since navigating their own households can feel like such a high-maintenance affair.
Remember to Enjoy Yourself!
You can’t afford to neglect your own personal needs – especially out of a sense of responsibility! Doing this puts you in a foul, exhausted mood that leads to a foul, exhausting performance in kind.
You deserve to treat yourself like a person – a day or two to enjoy yourself can make a huge difference in how you handle stressors. Your suffering won’t do your child any good at all.
There might be some families with parents who need to quit their jobs just to care for their autistic child at home. While that situation is completely understandable, you will need to have a hobby of some sort to distance yourself from your home situation at times – you can’t perpetually be on the clock for your kid without expecting to burn out at some point!
Get Some Outside Help
While the child is your responsibility, it isn’t your responsibility alone. You can call in others to help look out for your child from time to time.
It might be a little tough at first, as your child might be resistant to a new caretaker. Even if you don’t need help now, it’s always good to know your available options if the situation calls for it.
You might feel ashamed to ask for help, but it’s your duty to care for your child – not to burn out in service for them! The alternative would tax your well-being in time, and your health is worth way more than misplaced pride.
Try to think about who your child is alright to spend time with. Family and friends tend to be great options here – so long as they can be patient with your child, even during their most agitated state.
If they aren’t feasible, you may want to look into some alternative care options. Primary caregivers are often available for hire, though they may come at a premium. It’d be worthwhile to look around if you’re badly burned out – even a few days to recover would make all the difference.
Further education can be found in books, consultations with their doctor, and support groups.
We’d strongly recommend seeking out support groups. Not only will you find a like-minded community that shares in your situation, but they’ll also be very likely to share practical advice you can readily apply when tending to your autistic child.
It’s also far too easy to neglect your own physical well-being tending to them, so make sure that you keep regular appointments with your doctor to monitor your health. You have a duty to your child, but you can’t fulfill that duty while choosing to neglect yourself.
4. Find a Safe Routine to Fall Back On
Autistic individuals tend to prefer organized routines and stability. While they can be gently nudged to try new things, this change requires a lot of flexibility, time, and encouragement. Even then, you might push too far and agitate them if it’s done too quickly.
If you’re having a really bad time, focus on keeping things comfortably routine. An angry outburst could cost you months of effort and patience. Do not, under any circumstances, get angry at them for failing at a task – the fact that they tried is what matters here.
Getting your autistic child to try new things is tough enough already. The last thing you want to do is discourage their best efforts.
All in all, routine lets both of you relax a bit in one another’s presence. Consider it a fallback in case you or your child had an off day. Don’t overuse this, as fixed routines can lead to stagnation.
Your child still needs guidance to develop, learn, and mature as people. All this provides is breathing room – don’t turn it into a lifestyle.
5. Consider Picking Up Meditation
As a parent, you may feel smothered by responsibilities. This gets even more intense when your child is on the autism spectrum – you’re accommodating a whole lot of other conditions here.
The payoff for your effort – your child’s love and affection – might not reach you in ways that leave you content. They might not hug you or smile at you the way you expected your child to, and it can be disheartening for this reality to set in.
Hopefully, the two of you can bridge that communication gap in time, but the cognitive clutter can get out of hand and leave you an exhausted mess. Meditation won’t get rid of those problems, but it can provide you with a safe space to mitigate your worst fears.
Caring for someone with autism demands a lot, all at once, and your brain can’t stay wired that way all the time. You’d blow a fuse and lash out, or short circuit and shut down emotionally. Meditation helps us cool off, shifting our awareness away from stressors.
Meditation takes time and practice to apply – especially for people with anxiety. You may want to consider starting with a mantra here first.
Mantra, in the original Sanskrit, translates to “Tool of the Mind”. It’s there to ground you during the times your thoughts seem intent on sweeping you off your feet.
Repeating something as simple as “I love my child” can help remind you of your feelings, responsibilities, and the warmth you hold for them.
Think about what mantra might work for you, then read it aloud a few times per day!
Caring for autistic children can leave parents miserable and overwhelmed from time to time, as the condition comes with a lot of other factors families need to compensate for. They’re still your child though – deserving all the love and care that position entails.
Don’t think of them as an obligation, don’t overthink their future when the present needs more attention, and lastly remember that they deserve a parent who cares for themselves as a person – have some fun from time to time. Trust that they cherish you just as much as you cherish them.