The Adjustment of Parenting a Child on the Pathway to Autism

It was December 2018 when my 4-year-old son was first referred to the autism spectrum disorder (ASD) pathway. I have to admit that I didn’t understand a whole lot about this process at the time, but I came away from that first assessment feeling quite anxious, and had so many unanswered questions. What might this mean for my son, and for our family in the years that followed? Would he end up held back in his learning? Would he face social challenges, or in some other important aspect of life?

Having your child flagged for any kind of potential disabilities can be extremely unsettling as a parent. And so I did what some mums would probably do in that situation — I consulted with google, only to end up confirming all of my very worst fears!

The truth is that as a parent, all you ever really want for your child is for them to enjoy a “normal,” healthy and happy childhood. So when you’re faced with any suggestion of something otherwise, it’s really easy to jump to the worst case scenarios and start catastrophizing.

After the dust settled

Initially I felt lots of conflicting emotions; anger, disappointment, confusion, denial. And I felt quite fearful too. I just didn’t want the weight of a label, or the stigma of being different, to be placed upon my son’s life. But in the weeks and months that followed as I reflected on the situation, and as I talked to other friends with children on the pathway too, my perspective really began to change …

And over time I began to appreciate more of the beauty in who my son was and how he was made. I began to notice more of his strengths, rather than fearing those things that could be weaknesses.  I started to think about our differences as a good thing.

As a parent, it’s so easy to get sucked into comparing your child to other siblings or to their peers at so many different stages. Who is sleeping better? Who is walking first? How early did your child master toilet training? How soon did they learn to write, read or swim? The list could go on and on …

But the thing about comparison is that it’s just a massive joy robber and an anxiety inducer. There’s really no gain to be found in it at all, because comparison is always about measuring two intrinsically different people against each other, as if they were ever created to do the same thing.

I truly believe that there is beauty in diversity. I believe that to the very core of my being. And I thank god that we are not all born robots, who function exactly the same way … because that would make the world a very dull place!

But isn’t it interesting that when this idea is really tested in our own kids, for whatever reason, it’s somehow harder to stand firm on that truth?

Grieving the life you expected

As a society, we are still just only beginning to learn and understand more about how different people’s brains function in slightly different ways, and how that affects their learning styles and how they experience the world.

Imagine living in a world where we didn’t need to put labels on children who think or behave a bit differently, because it was just inherently understood by parents, by teachers, by schools, that not every child fits exactly the same mold, or behaves in precisely the same way.

Sadly, as a society we are not there yet. In fact, we are not even close. And so I recognize that right now a diagnosis can be a helpful thing in terms of ensuring that a child isn’t just labeled naughty, struggling through their schooling, or left feeling misunderstood.

My husband is a great case in point. He was only diagnosed with dyslexia in college at the age of 17, despite struggling with reading and writing for most of his school years. And he says that has his needs been recognized earlier, he might have found school less stressful and enjoyed learning a whole lot more.

I know all of this, but even so, in that moment when I was first told that my son Ben was being put on the ASD pathway, I still felt like crying with disappointment. And looking back now, I think it was mostly about the fear of the unknown.

In the days and weeks that followed, I had to begin to adjust my thinking to accept and celebrate the child that I was given, rather than wishing he would behave a bit more like everybody else … (whatever that even means!). And even though it feels horrible to admit it out loud, I needed to give myself time to grieve the kind of motherhood I expected to have, and find the grace for adjusting to a slightly different new normal.

Embracing the child you have

The truth is that my son’s life is a miracle. Medically speaking, he could have died as several different points during my pregnancy and birth. And so my husband and I feel so grateful for his life every single day.

But I have also spent a lot of time during the first five years of his life worrying and googling and waiting for referrals and attending appointments with my son, rather than just enjoying motherhood, and that can begin to take its toll.

So when the ASD referral first happened, it initially felt like, “Seriously? Not another thing!” But I no longer feel that way because at every single step in his development this far, my boy has exceeded all expectations.

As a baby he was referred for an MRI scan to rule out the risk of any brain damage caused by complications during my pregnancy, but everything came back clear.

As a toddler he was given physiotherapy because he was slow to walk and showed poor balance, but now he never stops moving and we simply can’t hold him down.

At age three he was referred for speech and language therapy as his talking was very limited, but he was discharged from the service soon afterwards, and now we can’t keep him quiet.

And last year, in his pre-school nursery setting, he was placed on a learning plan to support his social and communication development, but by the time he left to start school a year later, he was hitting all of his key milestones.

And do you know what? All of my googling, fretting, stressing, and worrying never changed a thing!

Parenting with intention

The fact is that I (and my husband) were specifically entrusted with this precious little boy to love and look after, and yes to advocate for at times when he needs us to. What an incredible privilege that is! And so what, if this means that I have had to learn to put aside some of my own preferences and parent in a more flexible way? How dare I wish that he was a bit more like everybody else.

You may not have a child on the ASD pathway like me, but when it comes to parenting there’s so many different circumstances and situations that you can leave you feeling slightly blindsided. And to be an effective parent means learning how to constantly pivot and adjust our approach along the way.

Friends with two, three, or even four children, often tell me how each one of their children is different and what works for one sibling, often simply doesn’t cut it for the next. They have to learn to parent each child as an individual. There simply is no one size fits all for kids.

This is true for absolutely all children, but even more important for children with SEND needs or ASD traits. And that’s challenging for us as parents. So I don’t want to make light of how difficult some of this pivoting and adjusting can be.

I recognize that autism and other disabilities can cover such a wide spectrum of conditions, and that there are huge variations in terms of the level of challenge posed for a child too. I can only really speak out of my own experiences, and my son is not on the most severe end of this spectrum where those needs can become very complex.

But what if some of the biggest challenges that we face in parenting, actually turn out to be some of the greatest lessons or gifts in our lives? And what if some of the biggest challenges that our children face, turn out to be interlaced with their unique purpose and gifting too? Our strengths and weaknesses can so often turn out to be two sides of the same coin.

Where we are now

A couple of weeks ago, just over 14 months after that first assessment, my son was reviewed by the same doctor again. But this time the conversation with the pediatrician felt strangely reassuring as he explained the next steps in the process, which I think that this was indicative of a shift inside me as much as anything.

Over the coming 12-18 months Ben will most probably be invited to several assessments with a panel of professionals, and information will also be gathered from his school. And after all of that, they may or may not decide to provide a conclusive diagnosis for Ben of any of the conditions that sit within the autism spectrum. It depends if a diagnosis would actually be helpful in supporting him.

I have also learned that the pathway is open-ended. So even if no diagnosis is made, we can still choose to keep him on the pathway and request further reviews in the future if we become concerned about anything as he gets older.

But ultimately, today I feel pretty relaxed about whether they settle on a formal diagnosis or not. Because whatever the outcome, it doesn’t actually change anything. I adore my son completely and wholeheartedly, and I am so proud of the person he is becoming, exactly as he is!