23 Apr 2014


Jimmy, my five year old eldest child, has Aspergers syndrome. Probably. He's definitely on the autistic spectrum, but needs to see the neurodevelopment team to have this made official and them to decide what to do next, in terms of school support and occupational therapy to teach him to deal with auditory processing problems.
We have been waiting for three months for an appointment, and it will probably be another three months before we get one. Meanwhile, we sit in limbo, waiting for the next thing to blow up.
This is Jimmy on his birthday:
He has the temerity to look normal.
And it's the normality that causes the problems.
See, mostly when people think of disabled children, the automatic thought is physical disability. It's very easy when dealing with an autistic child to forget they can't help it, to forget they aren't just throwing a fit to get their own way. I'll come back to this in a minute.

Until Jimmy started primary school last September, I convinced myself that it was my parenting that was the problem. I wasn't strict enough. I was too strict. I shouted too often. I gave in too easily. I wasn't good enough at maintaining a routine. He demonstrated problems at preschool, but they preferred to concentrate on what he could do rather than what he couldn't, which was GREAT because they had facilities and staff to have him on a one to one basis for as many hours as he needed. They never suggested he had autism, just asked me to get his hearing checked to make sure he wasn't ignoring them for no reason. The GP who did his hearing referral said he thought he had behavioural problems and I should bring him back for a referral to child development if his hearing test was normal. His hearing test was normal, and to my shame, I didn't take him back. I was sure it was me who was the problem, not him.
Fast-forward six months, and his first three weeks at school were hell. The first week, he kicked staff and was banned from having his dinner at school. The second week was no better, with added exhaustion from coming home for lunch. By the third week, he was on mornings only, and I took him to the doctors to get a referral. It was only at the very end of last term that he was able to start having full days at school, because they finally secured informal one to one support three days a week. The school managed to get an educational psychologist without formal referral, who has done a lot of work with his main teachers recently, and things have improved. But it's not been easy. I've formally complained once about their management, and had repeated meetings where I've tried to explain it from his point of view, and come away upset and angry that my little boy is perceived as such a monster.
Finally, at the end of January, I took him to see the paediatrician. The first words she said to me were "that's not normal" pointing at him, completely ignoring both of us. I explained him, she nodded and said he fit the diagnostic criteria for Aspergers, but the formal assessment would be made by the neurodevs. And therein we sit, in limbo, waiting.

His main problems are a total lack of social and emotional awareness, a frequent lack of spatial awareness - he does not realise people/things are there- very broken sleep and dysregulation. Dysregulation is one of my favourite words, and the reason we've been able to get him through the system relatively quickly. When something happens that deviates from Jimmy's internal plan, he goes NUTS. He screams. He fights. He kicks. He goes THROUGH people like they're not there. He cries huge tears. It is intensely annoying for most people to experience, and intensely upsetting for me to see him in such distress over so little. His default state is one of faint confusion and bewilderment.

But because he LOOKS normal, it is hard to explain to those who don't know him very well that... 
He ISN'T your average child
It is hard to explain that he has almost no empathy, that he doesn't care why you want him to do something, that he doesn't even realise you're there most of the time. It is hard to explain that although he's been asking to see you for the last 48 hours, he doesn't actually care once you're there. Or, that he cares too much and won't leave you alone. If you don't want him to repeatedly jump on you, he won't understand that without you physically removing him and explaining, and even then it's 50/50. He doesn't know when he's hurt you. He can't interpret your facial expression. He can sometimes tell from your tone of voice, but his expression-recognition is limited to happy, sad and cross. He won't look in your eye, unless he knows you really well. He sees no need for standard social convention.

On a broader family level, it's hard to explain to friends why you can't just pop round for a cup of tea with him, or why you can't have them round in the evening. It's hard to plan days out. It's hard when the school holidays come and he doesn't know what he's doing anymore. It's hard to go on the bus, and to go for a walk, and to nip to the shops. It's hard to go to parties, to plan for weddings and other social occasions, when you have to decide who'll be the one to take him out when he kicks off. It's hard to go on holiday, knowing he won't settle into the rhythm until it's nearly time to go home. It sucks when you can't even tell him he's going to his nanny's that afternoon because he will be angry and strange at school all day. 

There's a glitch in our Jimmy, and it happens when we change something. And we can't give him medicine or an operation to make it better, like we could when he had chronic tonsillitis. This is him.

He is autism, and autism is him. There is no part of his personality that is separate from it. It is how his brain is wired, it is who he is, and without it he would not be the son I know and adore.