I thought I’d put a quick post in about this, a couple of people have asked us from time to time exactly that; “How does autism affect parents?” and as my wife and I have been living with our autistic son Andre for a few months shy of four years at this point, we may be able to offer some advice on what to expect.
This is of course very early days, compared to many parents out there who may already have much older children on the Autism spectrum, and have been around the block a few more times than us.
I can definitely say with certainty that we have felt a lot of effects around Andre’s challenging behaviours, that have challenged us not only as individuals at times, but also even as a couple.
As many parents out there who have an autistic child will likely relate to, it can be very tiring, very trying, and at times make you truly feel like you’re going mad.
This is of course just simply our experiences of it so far, and we have much to learn, but without a two-way communication channel, it makes it incredibly difficult sometimes to achieve the simplest of tasks.
If like us, your child is non-verbal, as well as autistic, you will likely relate to the frustrations of feeling at times like you’re talking to a brick wall. This is where we feel we haven’t yet done enough in instilling proper consequence and such-as part of the ABC strategies discussed in previous posts.
Sensory input or misbehaving?
(Above: gates around the TV so Andre can’t touch the screen- we ‘should’ve’ left these up!)
Because there are some areas of behaviour where we haven’t yet achieved an understanding with Andre about the reasons to not do something mum and dad don’t want him to do, he will often repeat behaviours that we constantly say “No” to, as he doesn’t seem to understand the reasons why he shouldn’t.
As he seems to get some type of sensory stimulation by putting his face or hands on the TV screen at certain parts of his shows that he knows really well, us saying things like “Andre, stop hitting the TV!” constantly, seem to have no effect whatsoever.
Because most times we’ll say something like that, over and over, and then leave it at that, he has learned that he can ignore those requests, because there’s no real ‘consequence’ attached to disobeying them.
Because there’s been this failure on our part to reinforce consequences to these behaviours, he of course repeats them over and over, sometimes using bubble wands or various other toys to hit the screen with.
Where a lack of consequence leads
We were reminded of this just this morning, we’d fed both our children breakfast, had them dressed and ready to go to childcare, and were both just watching TV in the lounge room whilst Chrissy and I got ourselves ready to walk out the door.
Suddenly Andre turned up in the bathroom where I was brushing my teeth, and just handed me the TV remote. I walked with it as Andre led me to the lounge room, I looked at the screen to put on one of his shows (as this is generally how he tells us he wants something else on), and saw this:
So yeah, being our main go-to TV set in the house, the only one we had that was a more decent size at 43 inches, disappointment was certainly quick to rush in. The step down to one of the bedroom sets, at 32 inches, has felt like quite the step down-especially for my eyes that already struggle at times!
I say disappointment, when for many parents, seeing something like this might bring about some anger/ disbelief etc, because for us, these simply aren’t emotions that serve us constructively at all when dealing with Andre’s behaviours
Unfortunately, I knew straight upon seeing this, that a lot of the blame lay with us, for not instilling any type of consequence around the disobedience of our instructions of “Andre, DON’T hit the TV!” A neuro-typical child, you’d probably just tell them off, or send them to their room/ground them.
Because our son is non-verbal, it’s very hard for us to know how much he does and doesn’t understand of what is being said. Although he seems to understand when we’re telling him not to hit the TV, when we tried to explain things to him like “If you do, it could break, then even YOU won’t be able to watch your favourite shows!” it really did seem to have no effect or weight to it, as he doesn’t seem to quite grasp what we’re trying to relay.
This is of course where the power of consequences to certain actions, and reinforcers really come into play, as It’s very easy to accidentally be reinforcing bad behaviours with ASD children like our son. A great book by Dr Robert Melillo that discusses these concepts, and other strategies for autism can be found by clicking here!
When Andre’s constantly told not to hit the TV, but with no other real consequence for disobeying, he’s of course only going to continue the behaviour. We’ve struggled with consequences, as find it hard to get him to understand why a punishment may be enforced.
An ongoing work in progress
Although we are more familiar now with the concepts of reinforcement, consequence and the ABC’s, it is still very much a work in progress with us implementing these strategies in all the areas where Andre’s autism plays a part
The constant pressure of trying to keep on top of things like this can be exhausting for parents of autistic children. For us, trying to find effective ways to reinforce the good behaviours, whilst also trying to encourage Andre any way we can to use his voice, to try to be patient, not hit his sister, as we juggle raising another child, has definitely put us on the brink at times.
As I’m sure many parents of autistic children out there can relate to, when you, or you and your partner, are also working full time, it can sometimes just feel like a constant uphill battle, that at least in our case, has actually gotten harder over time.
When everyone was telling us things like “Don’t worry, it’ll pass & you’ll look back and laugh” we cringed as we saw certain behaviours only grow stronger over time.
Regression with autism
Because our daughter Ava has been an atrocious night sleeper since day one, my wife took her to a local Family centre for 4 nights, where they both stayed in a room similar to a basic hotel setting.
Within the suite, was an area off the main room with a crib for Ava, and a viewing area where the nurses and midwives could study her sleep patterns, and could come in to try to assist Chrissy with Ava’s self soothing and settling techniques.
Like everything else we’ve tried with Ava, this was unfortunately a fail for us, as she continued to be difficult during their stay, as well as once they returned home. Sadly, the only effect it did seem to have was on Andre.
Because Andre is still fairly bad with everyday transitions, when there are bigger changes like this, it really does tend to cause regression and sometimes even a return of things that he’d long overcome or gotten past.
After Chrissy and Ava did this sleep study program the first time, Andre managed to find one of his old pacifiers somewhere that we’d missed when we’d gotten rid of all of them a few months prior.
After having not seen him even touch one for quite a few months, it was disappointing to see when he quickly just became obsessed with it again, and wouldn’t let go.
Eventually, we just waited it out, and after a few days, took an opportunity when he didn’t have it, do dispose of it, ensuring there were no others left hidden elsewhere.
We felt we needed to do this, just as we removed the bottles of milk he was having at bed time, as we were told by our paediatrician that they can assist in delaying children’s ability to form certain words/sentences etc-so getting rid of them asap was highly recommended.
Obviously we saw the importance of this, and tried to eliminate them from his bed time routine as soon as we could. It was challenging, but after only about 4 or 5 days, he was happy to just go to bed without a bottle. We were very pleased to see this, as the last thing we needed with our non-verbal son, were more things to hinder his speech development.
The Ava predicament
(Above: Ava-we often wonder how something so adorable can be so demon like come sleep time!)
Because Ava wakes up crying, loudly, every time she wakes, both Chrissy and I can’t really miss it, even if we tried. Without exaggeration, a ‘good’ night, is if Ava only wakes up 2 or 3 times-between (bedtime)7:30-8pm and 5am.
This is a rarity, and most nights, it’s quite literally an average of 6 times, that we need to get up, pick her up, rock her back to sleep, sometimes with milk, sometimes without-taking anywhere from a ‘good’ 15 minutes, to 1.5 hours, to get her back to sleep each time.
We try to balance this out as best we can, but for some reason, Ava is obsessed with Chrissy, so even if Ava is screaming in the middle of the night, if it’s me that goes and picks her up, she just continues screaming until she sees mum! This sadly means Chrissy has the tricky, time-consuming part, almost every single time.
When I’m getting up in the middle of the night, simply to heat milk and pass to Chrissy, waiting in the rocking chair with Ava, there is definitely a feeling of uselessness, knowing that even though I want to do more, Ava simply won’t let me.
Naturally, having this go on like clockwork, for the vast majority of every night for us for the past 13 months, has wreaked havoc on the relationship between Chrissy and I during moments of pure frustration and exhaustion.
We both feel it every day, since it really is like 24 hours a day. This could be said for much of parenting in general I know, but with Ava’s nightly, loud wake ups occurring on average every 1.5 hours throughout the night, we certainly feel a little extra sorry for ourselves at times.
The autism related challenges and behaviours are what test us throughout the day, and our daughter all night long.
Glad to be Dad
In the six months or so since we had Andre’s diagnosis, I have read and watched a lot of information around autism, and the various ways it affects families, and in particular parents of autistic children, and sadly, have seen that things such as divorce rates in these couples are even higher than the already alarmingly high divorce rates of other marriages.
Many documentaries I’ve watched on the subject, that interview families with autistic children, seem to very often only have one parent residing with the children. What was more disturbing for me personally, was that in most cases, it was the mother’s left to care for their autistic children alone.
This is one thing I know I will never, ever do, which is give up on my children. Unfortunately I did not get much by way of role models in the dad department myself, my biological father walked out when I was aged 3, and our step dad pretty much always kept to himself.
To this day, neither of my brothers, or myself know very much about him at all, but just as my biological father did, my step dad appears to have decided to just head out on his own once my brothers and I had all left home (which we all did age 16).
We rarely hear from him, if we do it’s a brief email, only saying what he’s doing, and ‘good luck with everything’ after I told him our son is autistic.
My stepdad, who I still refer to as ‘dad’ has not met my wife, or any of my children. The last time I saw him was about a decade ago, before he returned to our homeland of New Zealand.
For these reasons, I know there’s nothing that could ever keep me from always being present with my children, always available, and always there for anything at all they need, with open arms. I know Chrissy feels the exact same way, so we of course have some pretty big shared common goals.
Obviously none of the Ava related challenges are technically autism related (yet-she’s still too young to be diagnosed but we know she is at a higher risk of having autism, having an autistic sibling.) but still ridiculously challenging, on top of already very full days.
Public holidays, at this particular point in time, are not a fun time for Chrissy and I as parents, as it means no childcare. Sure, it means we get a paid day off work, but it also means it will be a busy day of entertaining the kids, trying to keep them happy, co-operative and occupied.
When parents are constantly running on what feels like a perpetual state of exhaustion and fatigue, we’ve found it becomes too easy too somewhat take it out on each other.
In 99% of our arguments, we’re both sleep deprived, exhausted, and usually don’t really have a problem with the other person, just no one else to take it out on. We both just understand that although it’s the kids tiring us, or trying our patience constantly, we can’t exactly take our frustrations out on them.
This of course doesn’t really excuse talking badly or disrespectfully to your significant other, it’s just that many parents can probably relate to the isolation that can sometimes come with autism, from being able to do things with friends, or even with each other, that don’t involve children.
Because we can get stuck at home at times, usually because Andre is proving far too intense to take out in public, it’s of course easy to argue at times, as even when we want to get out-sometimes it’s simply not practical or worth the inevitable extreme public meltdown.
The truth for us, is that whilst our daughter Ava has been horrendous with sleep since she came into the world, added to all the daily pressures with Andre’s autism, work and all things life, Chrissy and I have never been on more shaky ground as a couple.
Find your rock
There have been times in the past 6 months, where we were both pretty much convinced we wouldn’t be able to continue, as it was just simply too much, too exhaustive, and we were tired of fighting practically every time we spoke.
The ways that many of these spats related to autism, were usually related to us each having our own thoughts on how was best to deal with a particular challenging situation with Andre. When you have an autistic toddler melting down in front of you, it can be easy for parents to get heated at times.
When the kids accidentally got caught between our wars of words a few times, just the looks on their faces broke both of us, and we knew we needed to either properly separate, or just work out some differences and get on with the job-for our children if nothing else.
Thankfully, in the end we decided that we probably weren’t in any kind of right minds to be making those kinds of decisions, when exhausted, sleep deprived and so on, and that the kids need and deserve two present parents, who can put their own issues aside and focus on being amazing, loving parents and partners.
For some of the reasons I mentioned earlier, regarding father figures in my own life, I couldn’t be more determined to do everything in my power to ensure I give both my children the absolute best of me, and the best dad they could ask for.
This, combined with a personal rule of ensuring I can honestly say I have tried absolutely everything possible to make a relationship work that I believe in, before I ever called it quits, certainly helps keep me in the game.
I’m a firm believer in always looking in the mirror first before we cast stones at others. As one great quote I like said:
“Before you Judge me, make sure you’re Perfect.” Quote by Ziad K. Abdelnour
Sometimes we just have to deal
Chrissy and I, when it comes down to it, both have a mutual understanding that we absolutely need each other, it’s like one cannot exist without the other. By this, I just mean there are so many things that my wife is amazing at, that I’m not so great with, and vice versa for her.
Autism can affect parents in a number of ways, in our experience, this has involved a huge melting pot of emotions, from absolute love, adoration and joy, to frustration, crankiness and exhaustion-and everything in between!
Not only the emotions, but of course the social impacts of autism can certainly affect parents of autistic children. Our social life is non-existent, other than the odd coffee with some of my wife’s family now and then.
As many parents out there can also relate to I’m sure, not only you’re social life, but even your hobbies and interests, take a massive back seat when raising autistic children. This can leave you feeling a bit isolated at times.
I imagine the same could be said for much of parenting in general, but as discussed in previous posts, for many of us with autistic children, the idea of just calling a babysitter is not usually a reality, so there often just aren’t any nights off, or ‘escape’ to pursue more of our own interests and hobbies.
Despite the multiple ways we’ve tried to remedy Ava’s sleeping issues, we’ve had nothing that really improved any part of it. Since we have of course had her checked over by multiple doctors, and only been told she’s a very healthy baby, so we know she’s okay, but has a huge attachment issue to her mum at night in particular.
With all the failed techniques and products we tried to ease this situation, we have resorted ourselves to the fact that this is simply our reality, until Ava one day (hopefully!) grows out of it.
We are at the point now where we feel we just need to “suck it up” so to speak, and accept that this is simply our ‘normal’ now, until they grow out of it, as we see the only way to get to better times, is by going through it all. We know that many out there have even more difficult situations, so we try to keep that in mind when feeling sorry for ourselves.
Keeping things in perspective
We of course have a long road along Andre’s autism spectrum journey ahead of us, but at this point, my best advice to parents I could offer, is to remember that if you do have a partner going through the journey with you, take the time to appreciate the things they bring to the table.
I find It can be helpful at times to try to remember the things that brought us together in the first place, why we decided to have children together and of just how much more difficult life could be if we were trying to do it as two single parents.
I believe a strong marriage or partnership is an absolute cornerstone when raising autistic children. Through the various ways that Autism can affect parents, and parenting in general, having that other ‘rock’ in your life, whether that be a partner or another family member/friend, can often be one of the few things keeping you sane at times.
We are determined to not become another failed marriage statistic, especially considering the scary divorce rates, so like most couples, it’s an ongoing journey, where we need to work together, negotiate, and constantly evaluate and readjust where needed.
We figure if there are problems with our relationship, that’s only going to become obvious to the kids sooner or later, so if we’re going to be together, we need to do just that and get on with the job at hand, to help provide as peaceful of a home environment as we can for all family members.
Just the happiness we see in Andre’s face when he sees Chrissy and I hug, is often all the reminder we need that he needs us to be strong together. We understand that there is much more involved than just the two of us if we were to ever properly consider separation, and even with our children, we both bring different things to the table in raising them.
Regardless of your situation, if you are raising a child on the autism spectrum, I empathise for the various ways this can affect you, and those around you. I wish you all the very best on your continued journey on the spectrum, and always welcome any feedback, or comments on ways that autism has affected your family.
As we’d say in New Zealand where I was born and raised, “Kia Kaha” (be strong).