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Spades

November 7, 2018

I’m going to try a little experiment. It’ll be a short post.

I was in the queue at the Tesco delicatessen counter this morning when a woman at the front of the queue raised us all from our slumbers:

“I’m going to call a spade a spade. That isn’t haslet. By nobody’s reckoning could you call that haslet. It’s an abomination”.

She walked off and said to the chap in front of me: “I’m too old to mince my words. I call a spade a spade”.

This morning, a long time Facebook friend posted an appalling picture. Her son has been living in a residential school run by the National Autistic Society. With little notice they decided that the school could no longer meet his needs and moved him immediately to an assessment and treatment unit. To prepare him for the move on the same day, they constructed a social story. Here it is:

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Taking my cue from the woman at the delicatessen – this isn’t a social story. It’s an abomination. It’s manipulative abuse. The last sentence is especially chilling. They are spinning his experience. Just suppose his experience at the ATU isn’t okay. Where does that leave him psychologically? “They’ve told me this is okay. This doesn’t feel okay”. As his new home will possibly involve lots of medication, physical restraint and hours in seclusion, is it okay for the NAS to try and programme him into compliance.

Let’s be frank, whoever wrote this social story wasn’t thinking about Linda’s son at all. It was done so that the school could feel better about themselves. A gloss to cover their shoddily abusive practice.

When you think so little of the people you’re meant to be caring for, then anything goes. The unit that Steven was unlawfully detained in went in big time for “subliminal messaging”. Changing the words Steven used to describe his home from “the Uxbridge house to Dad’s house” to try and detach Steven from his concept of his home and make him more accepting of being moved 250 miles away. And expecting me to buy into this deceit. I could give many examples of their attempts at subliminal messaging and every one made me heave.

It’s probably a coincidence but since the Rightful Lives exhibition, there has been increased attention from the press and media about the human rights violations of people with learning disabilities and autistic people. That is encouraging and even more encouraging is the reluctance of the media to accept the usual spinning. The old get out clause of “extremely complex needs” is coming under greater scrutiny. Someone’s needs may be complex but does that warrant them being fed through a hatch.

But I digress. In another Twitter conversation yesterday, I was reminded of the “Levels” system used at St Andrews to facilitate a patient moving to a less restrictive regime. I published these pictures before but here’s a reminder of what Level 1 (the lowest level) looks like:

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More lies. More violations. Completely service led. Imagine getting to Level 4. You might be assuming this is an upward trajectory towards discharge. And then low staff members means your long awaited trip to see Northampton FC play is cancelled and in one fell swoop your disappointment is used to send you plumetting back to Level 1. These are the games that are played daily if you’re being assessed and treated at £13k per week. One minute you’re trying on your replica football shirt; the next minute your arse cheek is full of rhispiridone and you’re eating your dinner through a hatch. Because the £13k didn’t stretch to 2 staff being made available for a 90 minute football match.

But don’t worry people. Because in the words of the National Autistic Society – “This is okay”.

The total shits.

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17 Comments
  1. judyb permalink

    Just horrific.How can anyone think either of these is in anyway acceptable?

  2. lisa permalink

    The Nas are self serving. This became apparent 10 yrs ago when they kicked my son out of their day service for becoming challenging. They do not give a damn for the people they are meant to help.The naive kind, public who donate, have no idea whatsoever. They see the words charity and autism and assume this organisation is there to help, as well as sending out leaflets. Will the Nas ever, ever, be shown up for what they really are?? It doesnt help when celebrities like Paddy Mguiness, early down the road with autism, hail the Nas as a godlike organisation..

    Beam me up right now .

  3. There is no way you can sugar coat this, and it’s certajnly not being sugar coated for the vulnerable young person at the mercy of these draconian measures.

  4. Unbelievable – what an appalling way to tell someone their whole life is to be turned upside down with no attention to the meaning for anyone let alone someone who is likely to get very upset at suddenly losing familiarity and unlikly to understand this. What does scrubbing out your home mean? Will I think some dreadful black cloud is about to land? – and this should be a specialist service in autism?!!
    In addition, St Andrews levels just tells me they control all… what does that mean for Bethany? Assumably stuck in your room with no access out fed through a hatch is completely off levels… minus what level?. It does remind me a bit of a hostel I went round in the early 80s which had a ‘behavioural’ regime which included if you didn’t tidy your room daily you would not be able to be included in a trip out on Friday!! Wouldn’t take one long to work out that the way not to have to go out is to untidy your room….. The levels is the same issue – it is not tailored to what will matter to the person – how about I’d prefer not to be included in the art/therapy rooms? I’d quite like to have someone with me when I’m in the courtyard….. If the issues are not tailored to the person in a positive plan that has listened to the person what IS the point!!

  5. FF2016 permalink

    13K a week handed over for nothing that resembles therapy, when the NHS is always in so much difficulty.. There’s no expertise happening here and we can all see it.
    How can lack of fresh air make any one feel better, or having oppportunities taken away?
    It’s negative reinforcement or classical conditioning happening mostly, which isn’t up to date thinking.

    The patient’s family should have direct payments and hire their own staff – real teamwork – as people sometimes do have outside of hospital. We’d soon see no staff shortages.
    Money can’t just keep going into a huge black hole.

    Telling people they are “OK” about anything others do to them is an abomination. And these “communications” in a social story here, are often weekly communications on a ward, in our case written by a speech and language therapy trainee who didn’t know my son, and I was having to correct words and symbols every week! So I was the SLT in reality.
    Symbols and words are supposed to make communication meaningful, but seem to be for appearances mostly.

    Well done, media, for your pivotal role..

  6. Gill davies permalink

    This has absolutely turned my stomach, I’m shocked, scared and feel physically sick. Where once my greatest fear was what will happen to my son with special needs when I die, now it’s will he end up in an ATU !!

  7. Pauline Thomas permalink

    What absolute terror for that boy. It is beyond belief that organisations that are being financially rewarded to help people with learning disabilities would behave in this utterly cruel way. The parents must be broken hearted.

    In 2012 the Journal of Intellectual Disabilities printed a paper called Crash. What went wrong at Winterbourne View by Peter Oakes of University of Hull. It was very very painful to read. It made me and other people who read it cry. It is still so relevant to what is happening to people with LD today. Another parent so moved by its contents sent it to our LA, who at the time were slashing and burning all the fine day centres in our area, much to the stress of the people who used them and their families. It did not change their minds of course but I wonder if any of it touched their hearts.

  8. The National Autistic Society need to rethink their wording. They should know better. ATU’s will never be ‘okay’ as it’s a place where abuse is acceptable and treatment limited. I mean what about those like my son who don’t understand the ‘levels’ or the consequences. Are levels acceptable? Some will always remain on level 1 and never move up and all because they are autistic on the lower end with learning disabilities and other disorders. Segregation is what it really is and no better than Hitler’s regime of the past. To think it’s allowed to go on in 2018 turns my stomach!

  9. JayneWales permalink

    Self serving bastards
    I’m worried now about this lad where the hell has he gone and why has he gone there??

  10. yvonne permalink

    This upset me today. Our kids are just commodities to them. What makes it worse is the fact that they also tell you to your face you’re not good enough or don’t know what’s best for your child. Stop putting our kids in a box. We don’t look alike. There is no one rule for all. They all have a voice -if you can be bothered to use the tools you have to listen to them. If you don’t – then leave me to my child and let me do/be allowed to do what I can for him/her. The time it took to create the manipulative social story, could have been time used to teach a useful skill. Arrrrrghhhhh!!!!! God help us all.

  11. lisa permalink

    And this is all from the National Autistic Society. !! They really must think ATUS are the way to go !!! Isnt it about time they were honest about what they provide instead of leading people up the garden path then dumping them off like rubbish? We do not stand a hope in hell if the Nas are allowed to carry on this way. If the Nas think its okay to do this to people , what the hell do other organisations and the general public think? Do they agree?( as after all this is the National Autistic society, so they must be right). It really does make me wonder.

  12. weary mother permalink

    Can anyone tell me if – LD adult with capacity – ,and no history, or behaviour or symptoms of mental history, ever – can be forced to be assesed by a LD psychiatrist – appointment made by SW/LA . Family say the individual lives independently – and has recently been failed in support by LA – safeguarding issue occurred – individual now told has an appointment to see Psychiatrist for assessment. Individual and family have no idea why appontment made. Can individual refuse to attend ?.

    • shirley buckley permalink

      LD comes under mental health which relies on a psychiatrist for treatment. Legally he probably cant refuse under the Mental Health Act. Capacity only applies to the Mental Capacity Act. Read Finola Moss on this. I myself was referred to a consultant psychiatrist on the grounds of being the mother of a son with complex epilepsy. I attended. Some years later my son’s social worker wrote that there was sufficient evidence to get my GP to refer me to a psychiatrist, and later on she presented Mr Justice Charles in the Court of Protection with 485 pages of evidence that I was a bad mother.and Surrey SS sought injunctive relief against me – and this injunctive relief was put on me with a penal notice. Whatever happens, “THEY” will win.

    • FF2016 permalink

      Yes, they can refuse, if there are no good grounds as to why they should be assessed.

      It is choice.
      They must have a letter to say why they’re having an appointment.
      If they have capacity, they have a lot more say in who they see, so they could choose their own psychiatrist if they wanted.

  13. For me, the worst bit is “this is OK”.

    told how to feel now? Wtf?

    If it said “If I don’t feel happy about this or I have any questions, I can…” that would be marginally better I guess,

    But THIS IS OK?

    NO THIS IS NOT EFFING OK.

    I am appalled. Sorry to shout. Its either that or cry. Sympathies to Linda’s son and family.

    • FF2016 permalink

      Flash Bristow, don’t be sorry to shout. And crying isn’t a solution.. 😕
      What we need to know is who decided this should be said – name and shame in every case. It doesn’t stop here if it is this serious.

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