How to help parents of autistic children
Before we had a child with autism, I knew very little about it, as is natural I guess for those who don’t have autistic children. This is why I felt it could be helpful to put together a list of concepts that can help answer the question of how to help parents of autistic children.
As my wife Chrissy and I have been living with our son’s often erratic, challenging autistic behaviours, every day and night for nearly four years now, we now have at least some grasp of what Andre likes, dislikes, and flat out cannot stand.
From parents, to friends, to extended family members, we have had our fair share of various tips and advice on how best to navigate Andre’s challenging behaviours.
Sadly, in most cases for us, the advice is useless to us, as both our children; so far, seem to be the 1% with various methods or products that claim to work 99% of the time.
As there is still of course a lot of confusion around issues such as autism in general, we’ve of course also had a good dose of blank stares, confused looks and questions about why things need to be done in certain ways with Andre.
Sometimes this can leave others who are wanting to help, feeling a bit lost as to how to go about that. Because of this, I figured if I could just help others see what we live every day, and why things are done the way they are, maybe they’d be in a better position to know how to help.
This is of course, as always, purely based on our own family experiences with our son Andre, who is our amazing 3.8 year old, dancing, smiling, energetic, non-verbal, autistic son.
Just for you out there to know these things, could greatly help parents of autistic children, by at least having some understanding of where we’re coming from. So in no particular order, here are my top 10 things you can do or grasp to help parents of autistic children:
1. Just because they’re autistic, that doesn’t make our children any ‘slower’ than any other children. In fact, you may be surprised at some of the more famous names throughout history, who have reportedly shown many traits or characteristics of autism. A few of these include Sir Isaac Newton, Bill Gates, and Albert Einstein even. Mathematics and the Arts are two areas that many autistic individuals have shown great proficiency with, many even to the point as being hailed geniuses of their craft.
2. We don’t get nights out anymore-so please don’t take it personally when we’re unable to attend functions or get-togethers sometimes. We haven’t had a night off in nearly four years (I know that will still be nothing compared to some out there!), we don’t see that changing in a hurry, as we simply can’t just call a friend, or look up a local babysitter. Babysitters are simply not an option for us-this is hard for regular parents to sometimes grasp when they say things like “You two just need a night away to get a break.”
Sadly, the only ‘realistic’ option for us, if we were able to organise a babysitter, to give ourselves perhaps a dinner out together or the likes, is that the babysitter would need to be a fully qualified, certified Behavioural Therapist!
As their usual rate is around $200 an hour, that’s not quite a feasible option for us-or many people, but that’s the reality of it for us, a typical ‘babysitter’ could not cope with the intensity and at times unbelievable frustration of dealing with an autism tantrum-especially when they’re on the severe, non-talking end of the spectrum like our son.
3. No one really ‘looks’ autistic as it is not something that will often affect a person’s look at all. We’ve heard things from people over the years such as “Wow, really? He doesn’t look autistic!” I’m not sure what a person with Autism Spectrum Disorder is meant to look like, but just like the rest of us, autism comes in all shapes, forms, sizes and colours.
4. Please don’t lecture us as parents on what you think is best for us to do to manage our son’s challenging behaviours. The way neuro-typical children react to certain things may be very different to our autistic child’s reactions, which we are familiar with, so just trust we know what we’re doing. Saying things (that we have been told once or twice before) like “Oh just tell him to get over it and stop being such a drama queen” does not help at all.
I imagine many parents out there of autistic children have experienced this multiple times. It’s not that we want to seem ungrateful for any offers of advice, it’s just more a case that if you don’t have autistic children yourself, and don’t live with the meltdowns, tantrums, extreme mood swings etc 24/7, you simply won’t quite understand.
5. Please don’t keep your children away from ours. Because autistic children are 99% just like every other neuro-typical child in the world, there’s nothing ‘wrong’ with them, they simply have a developmental disorder that they may need some help with from time to time. By trying to install some empathy in your children early on, encouraging them to play with our children, it can help ensure they grow up more accepting of various differences other kids may have.
6. Even if our ASD children act a bit ‘odd’ at times, please know they still feel emotion, just like the rest of us. Many things they may feel at a much deeper level than the rest of us, which as a result, can cause some major sensitivities to various stimuli for ASD children, i.e. bright lights, loud noises, crowds of people.
7. Yes, although Andre’s nearly 4, we do still have gates around the house, including in his room, and locks on drawers, doors etc. Sometimes people are surprised that these safeguards are still very much in play, long after the ages when many other homes with neuro-typical children have long forgotten about them.
We have a gate on our son’s bedroom because otherwise he will get up, walk around, and without supervision, could get into anything, or even out of the front door, since he’s gotten more proficient with opening doors and the like.
8. Like our son’s hat says “Please be patient” with ASD children. As frustrating as a situation may be when they are melting down or throwing an extreme tantrum, please try to remember that it is likely even worse for the child.
If your child is non-verbal like ours, then they can’t express in words what they need or want, so it does naturally get frustrating for them, it’s not that they’re ‘bad’ kids, at all. It’s more a matter of how easy it is for the rest of us to look at the world in a very black and white way. Whereas with autism, it seems there is a lot more Grey in the world.
9. There’s no road map for us. Since ASD covers a wide range of different traits, characteristics and disorders, every child is different. Because of this, usually things that are ‘tried, tested and proven effective’ for neuro-typical children have little to no effect with our son.
Aside from strategies we are taught at Andre’s therapy sessions, much of the way we approach issues or situations is just guess work. We are basically re-inventing the wheel every-day, trying to keep up with Andre’s constantly changing behaviours, obsessions and sensitivities.
10. Just like neuro-typical children, our kids are awesome at some things too. My son is an awesome 3 & half year old, handsome little boy who loves dancing, loves water and the beach, loves ice blocks like they’re going out of fashion, has a good sense of humour, a great smile-and also happens to be severely autistic.
Autism does not define our children alone, they simply process things a bit differently, and very much march to the beat of their own drum. This is a huge part of what makes them amazing, unique individuals, they don’t simply ‘follow the pack’ they instead create their own lane.
Lend me your ears
The truth is, this is our reality-this is what we live and breathe every single day. There are of course a ton of other ideas and ways of doing things, (based on all of Andre’s idiosyncratic tendencies) that we must also stick to on a daily basis in order to prevent as many meltdowns as we can. Just like many parents, there are no days off, there are no nights off. Period.
The best thing you can do, is give us as parents of ASD children, the space we need to deal with any situation that arises in which you’re present. You can offer support by maybe just being there for us, as someone to talk to when we need to.
It can be an incredibly lonely road at times, as parents of ASD children, since we are so limited in our activities & availability. Therefore, having someone just to talk to about it all can make a huge difference for us.
Just to lend an ear is hugely appreciated. We don’t need ‘advice’ as such, if you haven’t dealt with ASD yourself, just trust we know our children better than anyone, so it’s not intended to cause offense if we don’t implement your suggestions or recommendations.
Late bloomers & the unexpected Joys of being dad
My wife and I were fairly late to the party, compared to friends and relatives, when it came to creating a family. I was an uncle at age 13, when my older brother had his first at 17, and I was 36 when we had Andre.
My wife is a year younger, so pretty much the same, but it did seem late when most friends of ours had already usually established the family unit, got a deposit on their house, making in- roads on their careers by about their mid-twenties.
To be honest, I never actually wanted kids until I met my wife. I went my first 32 years-before we met, saying “Nope, sorry guys, kids-not for me, not gonna happen.” but when Chrissy suggested it, it just felt like a natural progression for us, she felt like the only person I’d ever been with who I could’ve imagined having kids with. We decided we’d get married first, as were already engaged by that stage.
Of course now, I cannot even fathom what life would be like with our two adorable little crazy kids. When we look back at pictures before the kids came along, we do look a lot more youthful, and the house looks so neat and minimalist almost!
Although I’m very obsessive compulsive about tidiness and cleanliness, I’d much rather have a messy house full of kid’s toys and happy children, than a clean and tidy house, but no awesome little, messy buddies to share our time with, buy toys and presents for and to share that awesome bond that I feel we both have with our children.
I’m not a religious person myself, but do feel that our son was given to us from ‘somewhere’ just the way he is, Because maybe we needed to grow as people ourselves, in terms of responsibilities, patience and so on-so perhaps some extra challenges were what was needed.
Our little princess
The verdict is still out on our daughter Ava, as she is only 13 months old at this point, and we’re told a diagnosis wouldn’t be possible for at least another year or two. Even if she’s not autistic (hopefully the case!) she has been an incredibly difficult baby with certain things, particularly sleeping at night!
We have been advised of the chances going up dramatically of the second sibling also having ASD, if the first child does. We were advised it could be anywhere from 20-50% higher risk!
When Ava was born, we hadn’t had Andre’s diagnosis, as it only came when he was just over 3 years old, and Ava was already around 6 months old.
We’ve asked ourselves at times if we would’ve gone ahead with a 2nd pregnancy had we known of Andre’s ASD-and the truth is, probably still yes, as sometimes-during the day, her happy little face can help pull us through some of the more trying times, and we wouldn’t be without the little princess of the family.
We feel, ASD or not, Ava will probably end up becoming quite a pivotal person in Andre’s life, supporting him with navigating a lot of the obstacles and journeys from childhood through to adulthood.
Times like weekends, we have both to keep up with all day, but Andre the hardest, with the energy, tantrums etc, but then having a baby that doesn’t sleep at night for longer than 2 hours at a time, just makes the days harder to deal with, as never truly get the rest we need at night-always playing catch up.
Andre is sadly still not a big fan at all of Ava at this point, but she still absolutely adores him. We’re hoping that will change, and sure that at some point they’ll likely be best friends (fingers crossed!)
Autism & our awesome little team
Although it probably sounds like I’m complaining a bit above, we both truly are pretty happy with the family unit we were blessed with, autism and all. Both Chrissy and I feel we couldn’t have really gotten a better set up-one of each sex, both awesome, adorable little people.
We are still very glad that Andre will also have his sister as part of his support network at home. And of course this will serve vice versa, if it turns out that Ava too has Autism.
Like any parent, we’re prepared to face the challenges that lie ahead, with our wonderful children, and each other at our sides. Autism, in our experience, tends to constantly shift Andre’s feelings towards objects or experiences, and on what he will obsess over until it changes back to something else.
This of course requires a lot of patience, a lot time, effort and extra work for us as parents of autistic children. It is, as I often put it, “beyond exhausting” at times, so a little patience, a little understanding, and even a little support when needed, can make a huge difference for us.
Other times, autism, and its many oddities and characteristics, can be the most amazing moments and experiences we get to share as a family. Moments of utter joy, that we get to spend with our ASD children-and most of us wouldn’t change our children for the world.
What YOU can do
If you’re reading this, and don’t have any ASD children yourself, but you perhaps know someone else who has a child with autism-or related conditions, that one “are you OK, is there anything we can do to help?” comment/text/email etc. from a caring friend or family member can make all the difference for us.
Often handling the tantrums, the meltdowns, the challenging behaviours, are not what we need help with-it’s usually all the other ‘life’ stuff that we don’t get a chance to do when autism and it’s challenges play a big part in what we can and can’t do.
It can be something as easy as grabbing a few grocery items they may need (since any shops come with their own full set of problems with some ASD kids like our son), taking a dog for a walk, maybe even bringing over what’s usually a much-needed coffee.
These seemingly easy feats can have major impacts on our days, so anything you can or are willing to do, will always be appreciated-as mentioned before, ASD is of course a 24/7 gig, and it certainly doesn’t stop just because we have other things that also need doing.
Just the understanding of that concept alone, and coming from that place of understanding, can be the best thing you can do in helping parents of autistic children.
As we don’t have anyone to tell us if we are doing a good job or not, as often, no one knows-it can certainly make you second guess yourself a lot. I’m sure this is the kinda stuff most parents go through, I guess it just sometimes feels more frustrating because we can’t just sit and talk to Andre about anything.
Although he has a few words that he’ll throw out here and there, he is predominantly non-verbal, hasn’t used any sentences as such yet, and so thus far, we’re never really certain how much of what we say is understood and how much isn’t.
This is why we are constantly just hoping we’re guessing right and doing okay by our son. We will of course keep trying new things with Andre, and Ava too, but very much trying to do as much as we can at all times to help Andre get as good of a start as he possibly can, with all the extra hurdles he’s going to have.
If you have a friend or family member, who may be the parent of an autistic child, and you can assist them in any of the ways mentioned in here, I almost guarantee they’ll appreciate it.
As mentioned, autism can be a lonely road, for the child, as well as the parents, so we won’t often reach out for help, as don’t want to burden others with things we feel we should take care of ourselves.
Because of this reason alone, you taking the initiative to reach out to any parents you know in this situation, even if it is just to lend an ear, can make a dramatic difference to us and you can take comfort in the knowledge that it is all appreciated, probably more than we can describe a lot of the time.