George and Sam

One mother tells of life with her two autistic boys.

My eldest son George is about to celebrate his 17th birthday in his own unique way. George will enjoy aspects of his birthday— he can tolerate receiving presents now, and he’ll appreciate the increased chocolate intake— but he won’t “celebrate” being 17. If anyone mentions his age, time passing, growing up or being a teenager, George cover his ears and screams.

George is autistic. He hates change. He particularly hates to be reminded that he himself is changing— “I won’t be a grown-up! I’ll stay little!” Of course, George is no longer little, whatever he says. He’s 5’10”, and he shaves.

My youngest son Jake shares a birthday with George; he’s about to be 9. Jake, who is not autistic, loves to pore over pictures of himself as a baby, and he’s always asking me for funny stories about his early days. Jake is aware that he has a past and a future, as well as a present. He has ambitions— a premier-league footballer, and a rock star in the off-season months. He thinks of names for his future children— the twins will be Diagona and Dandelion. More realistically, perhaps, he chats about whether he’ll feel brave enough to leave home and go to college. Unlike George, Jake can locate himself in the temporal and structural framework that the majority of us follow.

George is frightened by change, because, like many autists, he’s not good at sequencing— steps in life don’t follow logically for him. Instead, each one is a leap into the unknown. He’s acutely self-conscious— “Don’t talk about me!”— without a secure sense of himself. He used to panic at attempts to get him to play make-believe; he was scared that if he pretended to be a monkey, a soldier, a monster, he would become that thing and cease to be himself. He won’t accept photographs of himself as a baby— “That’s not me; that’s Sam!”

Sam is my second son. He’s 15, and he’s autistic, too, but he and George are as different from one another as either of them is from Jake. Sam has no interest in the subject of time and age, no understanding and no worries. Sam doesn’t know that he’s older than Jake, younger than George. He lacks an ability to compare himself to other people in any way. Sam’s not really interested in people at all, though he prefers some to others. When I show him photographs, he comments with pleasure on familiar objects— “blue ‘jamas,” “ironing board,” “Daddy’s car”— but he won’t identify people, himself included, unless prompted.

Sam’s obliviousness cocoons him. George, with his limited, confused interest in human behavior, is far more anxious than his asocial brother. Officially, Sam is the “low-functioning” one; he can’t read or write, he has limited speech, he amuses himself by destroying toys or stuffing things down the toilet, whereas George can talk quite fluently and has basic academic skills. But I’ve often felt that it’s more comfortable to be at the low-functioning end of the spectrum. If, like Sam, you live in the realm of physical sensation, largely shutting out the rest of the world, you only get upset when people intrude on your autistic privacy. If, like George, you’ve got one foot in the autistic and one in the neurotypical world, life feels uneasy and dangerous.

Raising my three sons is a balancing act, trying to respond to their very different needs and be fair to all three children. I’ve known George and Sam were autistic since they were 4 years old. I didn’t find it hard to accept the “autism” label, nor did I feel— as many parents do— that I had “lost” a normal child to autism. With hindsight, and with the experience of having Jake, I can see that my sons were born autistic, that my belief in them as typically-developing babies was mistaken. What I found harder to get my head around was the fact that autism is a profound, lifelong condition, and that it affects everything. The full implications are only just dawning on me. My friends with teenage children are adjusting to the idea that soon they’ll be living in empty nests. My nest, however, will remain crowded. George and Sam make progress— communication skills have improved; they now sleep through after years of broken nights; eating habits aren’t quite as dreadful as they were. But looking after my boys still isn’t very different from looking after toddlers. It’s not possible, as things are, to envisage an independent future for either of them.

I don’t mind, actually. They limit my freedom, especially as regards to travel and work. Their insanitary habits exasperate me— George’s current obsession is rubbish bins— but they can be funny and charming; they’re innocent and free of malice. I don’t have to worry about drinking, drugs, huge phone bills, unsuitable all-night parties. We have no rows about homework— I’m spared the problems faced by many of my friends. But it’s still strange to reflect that my youngest child will leave home and earn a living before his brothers make a simple trip to a store on their own.

What effect has it all had on Jake? Well, the age gap helps. Jake was born into autism; he’s never known any different. And his brothers are so much older that it’s inevitable that a different set of rules would apply. As the much-indulged “Benjamin” of the extended family, Jake’s never had to struggle for supremacy— he achieves it effortlessly. Mostly, he’s brave and tolerant and compassionate about his brothers. He’s scared of spiders and the dark, but he’s not frightened of an enraged Sam smashing windows. He enjoys doing well at school, but he never belittles George for his lack of intellectual or sporting prowess. He wishes he had siblings who could play with him, and he loves spending time with cousins and older friends who match his brothers’ age, as if he’s striving to fill a gap. He’s not— yet— embarrassed or ashamed of them; he has friends to play at the house almost daily. I asked him whether any other children ever said unkind things about George and Sam, and he was startled. “No,” he said. “Why would they? What unkind things are there to say?”

If I had my time again, I’d do a few things differently. I’d tailor the environment to suit the boys’ needs, rather than striving— as I used to— to make them fit into my world. I wouldn’t bother with children’s parties, or Christmas or group activities— I’d cut out the things that neurotypical children enjoy, but which are boring, baffling or nerve-wracking for autists. I’d never let a scrap of junk food into the house. I’d have run an ABA-type program at home from the start. And I’d have borne in mind from the start that no phase, no habit, however aggravating, lasts forever— there is progress, there is change. George and Sam are autistic through and through, just as Jake is “normal” through and through. My job is to respect and value each of my sons for who they are, not wish they were someone else.