When Sarah’s son Robbie was diagnosed with autism, aged four, she swore she would always protect and care for him. But 10 years on, she is in need of protection herself.
dmitting that I’m scared of my son is almost impossible and no one knows all the details of our life behind closed doors. I’m small and very slight and Robbie is now nearly 6 feet tall and quite solid so he can inflict a lot of damage on me if my husband David isn’t there to stop it. The first time Robbie hurt me he was 11 and I’m still not convinced it was deliberate. We’d had a week of terrible weather and on the Sunday we decided to take the boys to a museum.
We rarely do things as a family, as Robbie needs so much attention that his brother Joe ends up upset and frustrated, but we thought if we went early in the morning there wouldn’t be many people there. The first half hour was peaceful and David suggested he went to get coffees as we didn’t want to risk going to the cafe in case Robbie had a screaming fit. Two minutes later a big noisy family group came in and within seconds Robbie lost it, screaming and throwing himself on the floor.
Joe turned his back and I tried to calm Robbie while the family gazed at us in horror. Robbie was thrashing around and I was trying to put my arms round him, a mix of consoling and restraining, and he punched me right on the nose. I could feel it crack and I literally saw stars, something I’d never thought was real. Tears were pouring from my eyes through sheer shock and I could feel my nose starting to bleed. One of the older men said something like “Young man stop this at once!” but that meant nothing to Robbie, who punched me in the head over and over. All these people gathered round us but obviously had no idea what to do and then David appeared and dropped both cups of coffee all over the floor as he rushed to grab Robbie. It was utter, humiliating pandemonium, with one of the men shouting at David that Robbie needed a good hard smack and David shouting back “You stupid bastard, he’s autistic!”
All the way back to the car David held Robbie like a prisoner and Joe just said over and over, “I hate him. I wish he wasn’t my brother.”
It took us all weeks to recover. I had two black eyes and my nose and cheeks were bruised. Neither Joe nor David could look at me properly until my face was better. David was worried about me being in the house alone with Robbie when he came home from school but he has to work as I gave up my job to be at home with the boys.
When Robbie was a toddler he was cute, with a solemn little face and curly blond hair. He was quite controllable at that point as I could remove him from any difficult situation easily. When Joe was born my sister helped a lot, as Robbie clearly hated the change to his routine with the arrival of the baby. When he was formally diagnosed I thought support would be put in place to help us all. I was really naive and assumed there would be help available as soon as I asked for it, but I now think something was only done because I turned up in such a state and they could see the damage he’d caused. I believe that they only worry that we might harm or kill him and have no concern that one day he might actually kill me. We now live in fear of that couple of days respite being withdrawn for any reason so I would never, ever rock the boat by asking for more, unless things got really desperate. There’s very little respite care available, even if you can afford to pay for it privately, which we can’t. I also know from people in the same situation that it’s impossible even to hope that Robbie will be able to move into some sort of long-term care. There’s no money and hardly any places. No one sees us as important.
We were grief-stricken at his diagnosis but each had a different reaction. David wanted to find out everything about the condition in the hope of a cure. I just wanted someone to tell me that with the right approach he could still have a lovely life.
We came home and Joe was toddling round the living room, laughing at my sister tickling him and gleeful to see us. Robbie was tired and started banging his head off the wall and making the strange screeching noise that indicates he’s very distressed and might take hours to calm down. I burst into tears and David walked out of the room and slammed the door.
Severe autism is difficult to understand if you don’t live with it. Everything we do is centred on Robbie’s condition, which is really hard on Joe. Our house is like a minimalist fortress with every window and door bolted, anything potentially dangerous shut away and even ornaments or pictures taken down now. The third time Robbie swept his hand across the mantelpiece and shattered everything on it I decided it wasn’t worth the bother. Robbie won’t sleep by himself and although David takes his turn at sleeping with him through the weekend, I’m completely shattered most of the time as Robbie wakes if I move at all. I can’t sleep properly and I wake constantly because I’m stiff and sore from lying in one position.
The hitting started again six months ago, when he’d just turned 14. There had been a lot of tension with him at school and I’d been in and out for countless meetings. That’s frustrating because these people are meant to be professionals and trained to deal with children like him but it all came back to us and I felt judged because if his behaviour.
I asked about respite care and was told quite sharply that it was unlikely because Robbie was loved and cared for, and not in any danger. Two days later he followed me around the house, coming up close to me, making a humming noise. He does this to David sometimes, or to strangers, and David hates it – he says he does it on purpose to irritate but I don’t actually think Robbie knows how to annoy someone deliberately – but he never normally does it to me. Then he beat me up. He punched me over and over in the face, coming after me when I tried to get away and constantly hitting me as I tried to defend myself. Then he just stopped, sat down on the couch and started leafing through a store catalogue. I was scared to move in case he started again and just lay huddled on the floor till David and Joe came in. My lip was so badly burst I needed stitches and again my face was a mess.
That was the end of any sort of relationship between my sons. Joe hates Robbie and won’t listen to us trying to explain how frustrated he is at being unable to communicate and that is why he’s violent and also self harms. The tension in our house now is constant. David goes into work early as Robbie seems calmer in the mornings and goes to school all right, but after school is hard.
David tries to get home with Joe just half an hour after Robbie is dropped off. I’m always on edge. If Robbie does hit me when I’m alone I curl up in a ball on the floor and try to protect my face, and if David’s in he physically stops him and shuts him into his bedroom. He lashes out at David but he’s taller and bigger than Robbie, so he can hold him back. Joe goes to afterschool care so he doesn’t get in the middle of any violence.
So far we’ve managed to avoid Robbie attempting to hit his brother and Joe watches with complete disgust if Robbie starts self-harming. He told me last week that he wishes Robbie would die, which broke my heart because I know Robbie only hurts me because he is in such pain himself.
I went to the social work department with my battered face and begged for help which is why we now get the two nights of respite every six weeks. I couldn’t tell anyone else he was attacking me but then he tried to hit my sister so she can’t babysit anymore and David and I never go out as a couple, as we devote all our time to Joe during respite. I live from respite to respite and I never think about the future because that’s the only way I can cope with this life sentence.