A Voice Heard

I had an astonishing conversation with Steven’s psychiatrist on Tuesday.

It was Steven’s six monthly check up. I haven’t been to any of the appointments for ages. I had that awful experience at the mental capacity assessment in 2010 when the psychiatrist threw me out of the room. Although he retired a couple of years ago, I’ve left the support workers to go with Steven to the appointments. Mainly because the appointments have been so facile – ten minutes of ticking boxes about his appearance, his sleeping, his appetite and his behaviour.

On Tuesday, Steven got up late and the support worker phoned me to say that Steven was refusing to go. I phoned the clinic and the secretary said she would get the doctor to phone me at the appointment time.

It was a new doctor. Since the old chap retired, Steven has seen a different doctor at each appointment. That immediately starts things off on a stressful foot because we are unable to prepare him for who he is going to see. This time it was a female doctor and we went through the usual questions. However, her responses were nothing like what I’ve experienced before.

She asked me about his behaviour since stopping the anti-psychotics last July. I said that his meltdowns have been exactly the same. They were the same pre-medication, during medication and the same post medication. The tablets have made no difference at all – that is autism. She said, “That’s interesting Mr Neary. We need to know and learn from this information”. I was stunned. Never before has a psychiatrist said to me that they might be able to learn something from the information I was giving them about Steven’s reaction to medication.

Then we discussed Steven’s weight loss. The support worker weighed him at last week’s swimming and he has lost just under 11 stone. The psychiatrist said, “That’s incredible. And more important data of us”. She didn’t ask me about diet. She believed what I was telling her. I can’t begin to describe what a breath of fresh air that felt like.

We discussed the change in Steven’s sleeping pattern and she asked whether I thought it might be worthwhile prescribing some sleeping tablets. I said that the number of hours he sleeps hasn’t changed; it’s just that he sleeps later and wakes later. That doesn’t seem to me to be a good reason to introduce another tablet that could play havoc with his chemistry. And why would we be doing it? – for our convenience, not Steven’s. She agreed with me.

Finally, she mentioned about arranging Steven’s next blood test. I told her that last time, I was able to arrange for one of the male GPs at our surgery to take the blood as Steven finds waiting (potentially hours) in the blood clinic at the hospital very anxiety provoking. I asked her whether she could include in her report to the GP, a request that the blood test takes place there. And she replied, “Of course. That’s just the sort of reasonable adjustment we should be making”. I laughed. She asked me why I was laughing and I told her that she was the first person in ten years of Steven attending that clinic who had used the phrase “reasonable adjustments” to me. She just got it.

None of what I’ve written about is rocket since. What I asked for is not asking for the world. It doesn’t put people out and makes for a far less stressed Steven. And for once, I spoke to a psychiatrist who got it exactly spot on.