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The Bitterest Pill

August 16, 2017

One of the many scandals from last week’s GMC evidence was the admission that Dr Murphy prescribed risperidone to Connor before actually meeting him. This ain’t no Lemsip: this is one of the big boys of the psychotropic arsenal. But, as she explained, she had her pet theory about young autistic men, and when you herd a whole group of your patients into your pet theory cage, you can probably convince yourself that one pill is necessary, regardless of whether you’ve examined them or not.

Inevitably, this shameful disclosure took me back to the time Steven was first prescribed risperidone and my shame in letting it happen. Dr Murphy would have been rubbing her hands in glee because Steven was behaving in ways that fitted right into her favourite theory.

It was nearly 10 years ago. We’d been having problems getting Steven to go to school, ever since school returned that September. Come November, he wasn’t going at all. His routines were all over the place and we were reeling from the level of aggression we were facing. Nobody in health or social care would help and one Friday afternoon after the duty social worker told me the only thing we could do was to phone the police, Steven and I found ourselves sitting in the back of a police van being whisked off to the local mental health unit. He was kept there overnight, with me sleeping on the floor and the duty psychiatrist gave him a knock out dose of risperidone. She admitted it was the wrong place for him and he was discharged the following morning. Back home we both went to bed but I was rudely awakened mid afternoon by Steven hurling the alarm clock at my head. Later that day, two doctors arrived and after a 15 minute visit, Steven was given a prescription for more risperidone. And that was that for the next nine years.

The immediate impact was startling. The violence stopped and Steven took to his bed for the next six weeks, only emerging downstairs to make himself a drink. Even on Christmas Day 2007, he got up to open his presents but immediately returned to bed. My big memory was that he had an almost permanent, babyish smile. I didn’t see it for what it was – someone drugged to high heaven. And to my shame, there was a short sense of relief. After weeks of chaos and fear, I felt able to breathe again.

In February, the truth came out. As Steven wasn’t yet 18, he hadn’t been allocated a psychiatrist. (I never understood that. Until 16, you get a paediatrician. Then at 18, you get a psychiatrist. You’re not mentally ill; you just have a learning disability. It’s not surprising the psychiatrist is going to view you through a psychotic lens – that is their training). But a multi disciplinary team had kicked in and we assembled at the Civic Centre to “see where we are”. Someone asked Steven why he had been so out of sorts, to which he replied:

“Steven Neary doesn’t want to go to school anymore. Steven Neary is a man now”.

Bang! It was all there. I stupidly said to the social worker (This was the early days of our encounter with Whistler’s Mother) that we are dealing with a developmental crisis with heavy duty psychotropic medication. That was the start of me being labelled a “resistant parent”, a label I was still fighting in court two years later.

The truth is I colluded. The weight was piling on. Steven was now back out of bed and trying to create a new, post school life. His autism hadn’t gone away, so Holby City going off air whilst the Olympics were on, still produced a severe meltdown. A trip to HMV still triggered a massive sensory overload. But the edge had been taken off. And naively, that felt at the time like a small mercy.

Fast forward to 2014. During his time in the ATU, the risperidone had been increased dramatically. For containment. To enable their staff rotas to be low and cheap. Over the seven years on the drug, Steven had gained 17 stone in weight. In January 2014, he was in agony. He was in excruciating pain every time he sat down. He’d eat his tea standing up. He couldn’t bear to sit down in the car, so trips out were curtailed. He’d scream, sitting on the toilet to have a shit. We eventually discovered after going to a private clinic that his liver was failing as a result of the medication induced weight gain. But for four weeks, we were boomeranged between the GP and A&E, with neither of them that bothered. I’d been saying since the court hearing 5 years earlier that the tablets were killing Steven but I was a resistant parent and dismissed with another dietician referral. One morning in A&E, we’d been waiting nearly two hours. We hadn’t yet seen a doctor. Steven wasn’t being aggressive but was very noisy because of the pain. A nurse appeared and gave Steven a pill.

“What’s that?” I asked.

“It’s a PRN risperidone” she replied.

One of the support workers said it looked like I’d been head butted by a buffalo. I fell into a chair. We were there because Steven was being killed by a pharmaceutical and they give him more of the same to shut him up. No examination. No history taking. No conversation with Steven, me or the support workers. It was simple. Steven is learning disabled and this is how we treat learning disabled people.

A nice postscript to this story. At the weekend, one of the support workers suggested we have a day trip to the coast. I thought it was a good idea but knew that with Steven’s recent aversion to holidays (“Holidays are too busy”), we’d have to plan it carefully. Later, I was on Facebook and saw a post from Steven’s old personal trainer who now lives in Brighton. For four years, Adam put Steven through his paces, trying in vain to shift the weight caused by the risperidone. It was a fruitless task. The weight wouldn’t come off until the tablets stopped. But I thought it would be a good idea to combine a day trip to Brighton with meeting up with Adam again. I’m sure Adam will be impressed with the new, slimmer Steven and Steven can truthfully tell Adam their old catchphrase: “I’m massive fitter Adam”.

Steven is massive fitter. He can dance for longer. He can swim further. He’s been able to turn things around when most of the health and social care world were prepared to see him die. For a quiet life.

Steven took his last risperidone in June 2016. Even after the liver problem was diagnosed, the drugs are so powerful, it took two years to wean him off them. I’ve reflected a lot about “Steven Neary – the medication years” since last June. There were no benefits for Steven. Any benefits were for other people. A dowsed Steven made other people’s lives easier.

And guess what? A year after the last pill – Steven is still autistic.

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8 Comments
  1. I’m impressed by the way you write about your, and Steven’s experience. Upon reading this, I would like to add that these medications are used for people (supposedly) mentally ill in exactly the same way as you describe it. There is a total disregard for underlying problems, for dangerous side-effects and for serious risks to their health. No person with a learning disability should get this standard psychiatric treatment, in my opinion. But it doesn’t help with other problems, either.

    • Yes, the problems that cause the frustration in the first place need addressing, and can’t be swept under the carpet.
      Relief comes in different ways – we need to try other things equally – fun exercise, good interaction, emotional support, whatever the person likes.
      Risperidone for us did help a lot, and was only a small dose, and I don’t know when or what the long term effects were. In its place we have something else I know little about.

      • Drugs can never replace family, and when we did have the very very small dose of Risperidone, it helped – in conjunction with our good care – with little weight gain.
        Then after 8 years, we were in trouble again and I asked to increase the dose – but no progress was seen.

        Large doses are undesirable always – they’re given in Schizophrenia.
        But Risperidone is used for conditions that aren’t psychosis-related, and won’t take the autism away, but can reduce certain over-activity. Very little is known as to how and what it does..
        And it’s not prn either, so there seem to be some strange practices going on, as you say Steven had it as prn.

        We withdrew from the higher dose of Risperidone after just weeks, so your slow withdrawal was the opposite of what we were advised.
        Now we’re on a medication that brings out huge withdrawal symptoms if we attempt to reduce it.
        I think nothing’s monitored properly – and what’s needed is a regular dose of psychological support which outside of family often isn’t there, and no outlets to let off steam, and few opportunities – the frustration needs to be managed and distracted, just as any of us have hundreds of opportunities – we don’t need drugs as we have hundreds of choices – they need the same.

    • Deb Evans permalink

      Well written Mark.Just dnt know how will get Eden off these injections of Clopixol respiridone and procycladine.Where to even start Whn he gets the chance.Hes not the person I knew it’s not his fault.Its made him like a robot it’s broke me and ruined him😢

  2. Frannie permalink

    I am eternally grateful that our current community psychiatrist really works with us in trying to strip back most medication as I am not sure there have been any Long term benefits, In crisis like you we were desperate to get a chance to catch our breath

  3. Pauline Thomas permalink

    Mark it is so uplifting to read about the wonderful progress Steven has made since coming off Risperidone. However what a fight you have had to get him where he is today.

    So glad for you and Steven but I must admit I am a teeny weeny bit jealous too. My son who is 45 years old has been displaying ‘challenging behaviour’ (sorry I cannot think of a better phrase to sum up his problem), for the last four years since changing his epilepsy medication (which I have found out can bring on psychosis if on them long term), and I cannot get used to seeing him like this.

    He has, thankfully, got two good support workers who help him at the day centre and they do it with humour and compassion. However, some of the other people he comes into contact with are forever informing me how horrible he can be and I have turned into his apologist. I keep reminding them that his antipsychotic medication plus his epilepsy medication , plus his anxiety medicine are having side effects and if they were on them too they would probably be behaving the same way. It gets me down.

  4. “Ritalin ’may damage the brain’

    Scientists say children treated for ADHD with Ritalin may suffer damage to the brain’s impulse control in adulthood.

    Researchers found early exposure to methylphenidate, or Ritalin, lowers levels of Gamma-aminobutyric acid (GABA) in the pre-frontal cortex of adult brains.”

    https://www.autismeye.com/ritalin/

  5. Debbie permalink

    My dude has started low dose anti depressant, to reduce anxiety 8 weeks ago. I think it’s helped, no meltdowns over the holidays. However, he targets me and hurts me. He’s big, 6ft and about 14 stone. Camhs have offered respiridone as pnr and I’m ashamed to admit I wanted to get it. Partly to have some time off, without being scared of my son. So reading this I felt your relief and understood were you were coming from at the time. I have read your blogs, I know it isn’t the answer, I declined. His real issues are anxiety, sexual frustration and loneliness, to name a few! Our focus is on aleviating these issues. I hope we can continue to have a choice, I’m worried about there being an incident post 18yrs and not having a choice. I’m worried about so many things. Thanks for sharing this, it’s helped me feel a bit less guilt 🙂

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