19 Dec 2015

Twenty Six Months (And One Day)

In October 2013, I took Jimmy to see a GP about his mounting behavioural issues. He was referred to a paediatrican.
In January 2014, Jimmy was referred for an autism assessment following a provisional diagnosis of Asperger's-type autism. We were told the waiting list was 3-6 months, which I thought seemed suspiciously brief.
I was right to be suspicious - after 8 months, I phoned the clinic and discovered they had no staff. None. No autism team to do assessments. It wasn't just us, everyone in Peterborough has been waiting months for their child's assessment. In May 2015, after a particularly awful spate of school and home based episodes, me and Jimmy's dad both tried to get his appointment expedited. Jim was self harming, hurting people in the class, spending more time out of class than in it. And there was nothing the hospital could do except assure me they were reassembling a team and his name was quite near the top of the list when they did this.

Imagine my joy when I finally got an appointment...for exactly the same date and time as he was due to have a herniorraphy in Norwich. I had to cancel - surgery takes precedence over lifelong development delay. I was expecting to have to wait another six months for a new appointment, but they actually made me a fresh one for just three weeks later.

And the nerves kicked in. You see, the problem with having a child with reasonably high-functioning autism is that you doubt yourself. You doubt there's anything wrong with them. You think...what if it's just my shitty parenting? What if I'm wrong? What if he's normal and I'm the problem?
The whole of society are hell bent on either pretending autism doesn't exist or pretending everyone's a little bit autistic, ergo autism is nothing to worry about. You may detect a note of weariness here. You would not believe the amount of times I have come up against people who think autism is a childhood illness, or an excuse for bad behaviour, or a symptom of Munchausen's by proxy. The people who think that because they get a bit anxious in crowds or trying new things, they too are autistic. The people whose idea of sensory overload is annoying levels of noise rather than hideous distress.

Jimmy, as I've mentioned before, looks normal. Until he's lying face-down on the pavement because of a dog, or screaming bloody murder because you've asked him to put toys away, or biting himself because he's worried, or gouging at his friends' eyes, or walloping his little brother over the head with a wheelbarrow, or wandering around a moving bus like it's his bedroom, or shaking the baby all over the place because he thinks that will settle him, or just until you try and have a conversation with him when he doesn't want to. He is full of surprises.
I've been rebuked for referring to him in terms of normal and abnormal. The truth is, to consider autism as an abnormality allows the world to marginalise autistic people as subhuman and unimportant. They aren't. Let's not do that. Let's embrace neurodiversity, because autistic people and their 'abnormal' brains are capable of everything you are, and more.
But when you're talking diagnosis, you have to look at what isn't normal, what isn't standard, what is strange and weird and difficult. It is awfully depressing, because the way you cope with the challenges of raising an autistic child is to concentrate on what they can do, what they are good at, what they can excel in, and you have to reverse this way of thinking entirely for the purposes of all things medical and benefits.

The first part of his assessment was an ADOS assessment. This stands for autistic diagnostic observation schedule, and involves a 45-ish minute appointment between a psychologist and your child, but (if your child can speak) not you. That was a bit jarring. Jim was lost in a world of his own when she came to collect him, building patterns out of blocks. But he went off with her quite happily and without any anxiety. He's getting brave. I asked him what they did - talked about feelings, acted out a play and played with Batman apparently.

The second part of his assessment was a week later, and is called an ADI-R or autism diagnostic interview (revised). This one was just for me, and Alex who's too small to leave for three hours yet. The night before, I was a terrified wreck. I collated all the letters and school bumpf I had, wrote out a timeline of symptoms because my memory is dreadful in face to face interviews, and tried to lose myself in the dreck of X Factor. It made no odds, I barely slept and then the kids wouldn't get up so I was all of a mess in the morning.
But, thanks to my dad, I made it on time. The psychologist was lovely, and the interview took four hours. It is so long. SO LONG. You have to talk about behaviour now, at 4-5 and at 3, to do a backwards comparison. You have to talk about every little thing that you stopped considering odd years ago, and try and make sure the salient points are included. If you're reading this because you've got an ADI pending, fear not - they include EVERYTHING and ask for more stuff at the end. It was actually pleasant to sit and talk about him without any focus on "and how do we fix this" for a while. Everything ends up so goal focused in SEN that you sort of forget that there's a real person under it all.
At the end, she added up the myriad totals and told me the result. Jimmy scored highly on his ADOS, mainly due to communication difficulties. Jim is so very verbose that I forget that his communication is abnormal - he doesn't converse, he makes a speech at whoever listens.
His ADOS scores were
Reciprocal Social Interaction: 5
Communication: 3
Restricted and Repetitive Behaviour: 1
I don't know what the normal levels are, but this combined gave a score of moderate autism-related symptoms.

The ADI-R scores were as follows:
Social Interaction: 22 (normal is below 8)
Communication and Language: 29 (normal is below 10)
Restrictive, Repetitive and Stereotyped Behaviour: 9 (normal is below 3)

I was shocked. I knew Jimmy has problems, you would have to be without a head to notice them, but to have them spelled out in black and white was a strange, disorientating feeling. I have been waiting for two years for this. Two years of wondering what if I'm wrong, what if he's fine, what if it's just me, what if he's just made wrong. And then there it is.
Not Aspergers, because his social and communication difficulties are quite profound. Moderate, because he can speak and function well within his own spaces. But otherwise, a textbook, classic autistic boy (her words, not mine).

I got home and I wept.
I wept for the six years I have spent worrying, advocating, fighting, shouting, wondering, hoping, hating myself for hoping, listening to bad advice, listening to good advice, listening to any bloody advice. I wept because I love him, regardless of how hard it is sometimes. I wept because I should be grateful he's not ill, and this isn't an illness, and he will be OK. I wept because it was a shock, even though it wasn't a shock.I wept with relief, and with pain, and with love.

Then I had a cup of tea and got on with it, because nothing has changed. Jimmy is exactly the same as he was a week ago, a month ago, a year ago. He was born autistic, he will die autistic, and he will live autistic. He is autism, autism is him. There is no separation. A label cannot change brain chemistry.
But now we can learn to cope with him better. He can get the help he needs in school. We can modify how we teach him things.We can help him

This is not the end of anything, although the journey to this point has been long, but the beginning of lifelong learning to help Jimmy.