My younger son Jacob, who has no additional needs, has a best friend called Alfie. Recently Alfie has been diagnosed with autism and, although I know it’s none of my business, I have mixed feelings about this diagnosis. I think it’s because I only wish that Luke, my autistic son, had had a friend like Jacob when he was younger, and that I’d known a family going through the same thing who could perhaps advise and understand, in the way that I do for Alfie’s family. 

I’m intrigued by this ‘best friendship’ between Jacob and Alfie and I wonder whether it works for them because of the amazing relationship at home between Jacob and his older brother. Being the younger child, Jacob has never known anything different to an older brother with autism. I believe that what allows Jacob to get so close to Luke, closer than his Dad or I can, is quite simple: his is a sibling and not a parent to Luke, and therefore doesn’t have a parent’s constant anxiety. If Luke does something odd or surprising, Jacob can just observe it and move on straight away, whereas I can’t shake off that scaffolding of anxieties — will he ever stop that particular behaviour? What are other kids thinking?  Are other parents judging me? That complete lack of anxiety allows Jacob to get closer to Luke. 

Jacob models (that’s a therapy term rather than any indication of perfection!) socially appropriate behaviour and interaction to Luke 24/7, which to me seems like a kind of constant social therapy. It’s not at all that I think this modelling will directly rub off on Luke, more that I have gradually come to understand Luke’s autism much better through Jacob’s development. When I observe the things Jacob can do instinctively, particularly socially, it puts into focus the things that Luke can’t do. It’s a painful aspect of parenting for me, but it’s incredibly useful too. It’s more useful comparing Luke’s thought processes to those of a neurotypical child than to my own as a neurotypical adult, as at least they have childhood in common. It also shows me how other children respond to Luke’s behaviours, which helps me prioritise what to work on with him. The things which bother Jacob about Luke the most can surprise me too. Children seem to hate anything they perceive as an injustice, however minor it may seem to us as adults, but they’ll tolerate or barely notice a surprising amount of farting and nose picking!

Jacob already has the instincts of a speech therapist; he has some great strategies up his sleeve. He’ll calmly give Luke countdowns. He’ll give Luke directed choices to help me move him to the required activity, ‘Luke do you want homework and then pudding or just homework?’ He’ll tell Luke to write down new information on his schedule, ‘Mum said we could have pizza on Tuesday, put it on your chart so you know.’ Jacob is only six, so his ability to ‘read’ and predict Luke, as well as redirect him, regularly surprises me. Jacob can get physically close too. He will gently turn Luke’s face towards his to get his attention. They will lie on top of each other in a heap sharing comics, books and Lego instructions. One of the highlights of their week is sleepover night when they share a room and play elaborate role-playing games that I don’t understand.

It’s hard to describe the powerful bond between Jacob and Luke. Maybe it’s most evident in the everyday interactions. Lego is a big deal for both of them. Initially they played with Lego very differently, and in Luke’s case you couldn’t even call it playing. He would build models with complete accuracy from instructions. He was (and is) fantastic at it and I would say, only half in jest, that Lego instructions were like a first language for him. But to start with, Luke had no concept of playing with what he’d built. Once he’d built it, it was finished. (I enjoy the blunt logic of Luke’s autism. In his mind, he’d completed the job. Would you play with an Ikea Billy book case you’d just built?) Conversely, Jacob would ‘create’ Lego. He wasn’t at all interested in the instructions; instead he’d invent his own weird and wonderful models, often modifying Luke’s builds. 

That was a couple of years ago, and actually you could probably chart the development of their relationship via Lego. The first day Luke couldn’t find the right piece for a helicopter and was happy to accept a ‘wrong’ coloured piece in its place, was a triumph of flexible thinking that I know was hard for him, but was absolutely down to Jacob’s influence. These days, I don’t need that hard-line distinction between Jacob’s creative Lego and Luke’s exact, follow-the-instructions builds. They will now spend hours and hours and hours engrossed in Lego play, using models built from instructions but now modified, improved and recreated to within an inch of their lives. 

The role playing involved in their Lego universe is something to behold. Luke seems to engage with fictional characters best through their Lego incarnations. So Scooby Doo, Superman, Darth Vader, Harry Potter and Dr Who will all interact quite happily. There is some re-enacting of TV scenes involved, but more often than not it’s entirely created scenarios being played out. Watching my boys play Lego together, I really see Jacob’s wonderful influence. There is a language of play between them that’s quite impenetrable for me as a parent, and I feel that’s as it should be. 

Of course it’s difficult too for a sibling of a child with special educational needs (SEN). Jacob once asked me whether he would be autistic when he grew up. What on earth is the right answer to that? Do siblings experience some kind of survivor guilt later in life that their brother or sister has a lifelong condition to cope with, and they don’t? I even managed to worry that Jacob’s question implied that I had made life for Luke seem somehow more fun, with his endless rounds of games, high-impact activities, computer use, trip planning and more. Did Jacob think Luke was getting a better deal? 

What I don’t yet know is how this lovely sibling relationship will play out in adulthood. I really believe in secondary socialising; the idea that autistic children find it easier to interact socially through a specific and structured activity (perhaps soft play, a game or a cinema trip but especially a regular activity such as a weekly club) rather than through the organic free-flow of, say, school playtimes. As such, I think about sowing the seeds now of the adult version of Jacob and Luke’s relationship, though it’s hard to imagine quite what that will be. Football matches? Church on Sunday? Playing in a band? Going to the pub? 

I truly believe that autism has given my family more than it has taken away. It has liberated me from my own expectations of parenting, and has given me the confidence to make the big decisions which are right for our family. I have met some extraordinary people in the special needs and disability world, whom I would never have otherwise had the privilege of knowing. It has made me far more engaged in my local community than I otherwise would have been, and it has led me to an incredibly fulfilling part-time job.

But the greatest gift autism has given me is the sheer joy of watching the constantly developing relationship between my two boys. They attend the same mainstream school, one of the biggest in our south London borough. It’s a wonderful, diverse intake of children, many of whom have complex additional needs. Most if not all classes have at least one child with autism and some have two or three. I hate the seemingly enormous distinction between an autistic world and a neurotypical one. But for my children’s generation — and for all those kids at their school — I just don’t believe that enormous distinction exists in the same way. They are growing up with autism around them on a daily basis. Young children can teach adults a great deal about tolerance, and these children will grow into adults who are far more used to autistic people than my generation are. When I think of Jacob’s relationship with his best friend Alfie, enabled at least in part by his brilliant bond with Luke, I have high hopes for the futures of those autistic children and their integration in society.

Some years ago I was given a piece of advice by a speech and language therapist: he said that having Jacob was the single biggest thing we could have done for Luke. I’ve thought back to that advice many, many times since. It has turned out to be absolutely true.

Furthermore, I am convinced that Jacob and Luke get on together better for Luke’s autism diagnosis than they would have done if they were both neurotypicals. I sometimes feel Jacob and Luke need separating for a while, particularly during intensive times like the school holidays. But they almost always choose to be together.

Katherine is the mum of two boys, eight-year-old Luke, who has autism and is awaiting a diagnosis for ADHD, and Jacob who is six. She lives with her husband in south London.