The internet is full of stories about the struggles of raising a child with special needs. Many of these are dedicated specifically to how tough it is to raise a child on the autistic spectrum . Now, I don’t want to negate the importance of those. They can be really important. Highlighting the tough times helps raise awareness, helps people understand and can certainly do good. It helps people realise the difference between a tantrum and a meltdown, the difference between hyperactive and naughty. I’ve noticed though, that there aren’t very many articles or blogs that focus on the joy that autism can bring to a family. I’m the father of a 5 yr old autistic boy called Morgan and I feel, despite the challenges that autism has brought, that it’s also brought us a lot of special moments. Those deserve a voice too, so in this post, that’s exactly what I intend to show.
1. The lows are pretty bad, but the highs can be AWESOME!
Parenting a child on the autistic spectrum is undeniably stressful at times. Sensory sensitivities and unpredictable emotions can make for a bit of a rollercoaster every day and things can get pretty hairy. At times like these you have to ignore everyone around you (sometimes autism pulls a crowd, especially when he’s gone nuclear right in the middle of a crowded Disney Store) and focus on getting them back to a calm state of mind.
But, despite times like this, there are often just as many beautiful moments. I’ve lost count of the times Morgan burst out laughing at something no-one else had even noticed. Some funny sound or something otherwise innocuous happening on the TV. Morgan seems to have a particular love of slapstick so if anyone ever falls over or a cartoon character gets walloped, you can bet Morgan will be in stitches and before long everyone else is laughing with him.
Being an ASD (Autism Spectrum Disorder) parent also teaches you to appreciate milestones. Now, of course every parent appreciates their child’s achievements but the distinction for parents of ASD kids is that we have no guarantee they’re coming. We nurture, we encourage, we train just the same but there is always the possibility that our child won’t develop full speech, toileting or social interaction, EVER. That’s why when our little guys or girls come up to us and say ‘I love you’ or ‘Mummy’ or ‘chocolate spread’ it’s the biggest deal in the world EVERY SINGLE TIME! When your 6 or 7 or 12 yr old comes to you and shows you they used the toilet all by themselves, it’s not just a weight off your mind. It changes how you see their future, it’s a weight off their back. To a regular parent these things are beautiful and important. To ASD parents they are like SOLID GOLD UNICORN WHISPERS.
Becoming a parent, especially to multiple children, can require even the most laid back person to start getting their schedule together. Being the parent of an autistic child takes everything to a whole new level. All outings, parties, trips, birthdays and shopping excursions require at least a small amount of situational analysis. Will there be any sensory risks? Is it a familiar place? What do we need to get done? Is there anything we need to avoid? (At this point it’s worth noting that we are currently only able to visit Toys R Us if someone keeps Morgan at least two aisles clear of the ride-on cars. Any closer and we’ll be having a really hard time getting him out again without triggering a full scale paddy).
Day-to-day activities like the school run also need to be carefully planned with contingencies built-in in case something goes awry. Some days are a real challenge, both when leaving the house or when getting him settled at school (he’s still in mainstream education for now) but importantly, just as often, he’ll dash in happy to see the back of us (at which point we sprint to the car).
This just means we have to be organised enough to switch roles and reconfigure at a moment’s notice. We have two other children at different schools so it can tend to feel like trying to do a Rubik’s cube while riding a motorbike. It sounds dramatic but if it isn’t handled properly we can end up with a very upset Morgan and me an hour late for work. Thankfully this organisation carries over into the rest of family life, to the point that we’re almost a freakishly well-oiled machine at times. Sometimes we can get everyone in the car in under five minutes! In short, having an ASD kid really does get you in sync as a family.
3. There are surprises every day
Despite that entire previous section, sometimes being so focused on the routine can leave you totally unprepared for the curveballs that a child on the spectrum can throw at you. To date, Morgan has:-
- learned how to use the iPad to control the TV (at 4 yrs old)
- learned how to use the iPad to control the music in the car (at 5 yrs old)
- learned how to script his way through whole books despite having a PITA score for Reading of 2.
Sometimes it can be more subtle. For a long time he would not sit at the dining table, preferring instead to sit in the lounge and eat from the coffee table. Then one day, he just turned up to the table with his plate of food and cutlery, sat down next to his sister and started quietly eating. It was so nonchalant that we barely registered it at first, he was just sat there chewing on a chicken nugget whilst his mother and I looked at each other in stunned silence.
Another time, an unknown girl came up to Morgan in the street and went to say hi, but really close! This immediately raised a red flag with us. Morgan doesn’t usually respond well to unfamiliar people and this one was making a beeline into his personal space. I’d already begun constructing the apology in my head for why Morgan had so rudely rebuffed this harmless, affectionate child. Instead, he opened his arms wide, gave the girl a big hug and said “Hi! Lovely to see you!” and then let her go. Cue us, the parents, dumbstruck once more.
You can spend so long worried about some potential trigger or sensory surprise that when something like that happens it’s incredible. Often, these surprises are like little windows into his mind, revealing that a conversation you thought he’d forgotten or ignored had, in fact, been carefully noted and contemplated ready to be replayed, analysed or announced in the queue at the chip shop. It wakes you up to the fact that your kid is quietly growing in ways you’ve hardly noticed.
4. Lack of a filter can be a breath of fresh air
One of the common ‘symptoms’ of ASD is a natural inability to successfully detect and interpret social rules and nuances. This is why social situations can be quite stressful and complicated for older autistic people. In the mind of a five yr old boy, however, this manifests as him giving literally not one jot what those around him think and it can be particularly liberating and fun to see how people react to his brazen demeanour.
It can be a bit tricky to manage. He once stood on a chair in a Wetherspoons and shouted “F*CK EGG” at the top of his voice which was equal parts horrifying and hilarious. He was having a wail of a time though. He’s also got a rather liberal attitude to keeping his clothes on, something we’ve luckily managed to restrict to when he’s inside the house. Obviously, he’s a clever little chap and slowly he’s beginning to learn where the boundaries are. In the meantime, we just have to stay on our toes.
As he gets older, he’s going to be missing the protective armour of intuition and interpretation that most of us take for granted. Having that tends to lubricate normal human interaction for the rest of us, but he lives an experience of very literal, direct things. This isn’t always a negative thing, because Morgan is the very epitome of a straight-shooter. When he talks, it’s without a filter. If he comes up to you and hugs you or tells you ‘I love you’ it’s because you’re really important to him, not because of any sense of what is appropriate or required. Morgan is just as likely to come and tell you the same thing at 4am while you’re trying to sleep (the response he gets is less enthusiastic in the wee hours). Whatever it is, it always straight from his big old heart and if he says something it’s because he feels it. I think there’s a lot of truth in the theory that autistic people struggle with interaction because they actually feel more than a typical person, not less.
I said earlier that parenting an autistic child can be stressful. At all times I try to ask myself “If this is stressful for you, what is it like for him? The answer is always the same and it always helps me get perspective. Whatever strain autism puts on us as parents, the strain on him is so much greater and it’s our job to lessen that burden wherever we can. I see Morgan trying and it makes me super proud, even when it gets the better of him.
It’s not just our interactions with autism that are put in perspective though. Everything gets put through the same filter. If I’m getting exasperated at stupid grown-up stuff, I’ll take a moment and remind myself “If that little dude can get up and strap his big boy boots on today then so can you.”