Viewpoint: 10 jargon phrases used for my autistic son

 
Mark Neary and his autistic son Steven Mark and Steven Neary

My son Steven is 23. He has autism and other learning difficulties. And the language of the social care system seems to make his life sound even less "normal" than it is.

The adult social care world is about many things, but one thing that I feel it's not about is care. The language seems to mislead you right from the start. Processes seem to come before people in a system of impenetrable management where money is the biggest consideration.

Day centres are closed down. Although you may have considered them a helpful lifeline, this closure is not a negative thing because it's been done to promote independence.

Service user choice is also a fabulous phrase until you find it results in being given a sum of money to purchase your own care provider but no one provides care at those rates which are calculated for you by a fairer charging policy. Which also sounds good but isn't.

Steven was transitioned into adult services six years ago. Soon after, he was taken into a care unit against all our wishes which resulted in a well-documented court case (Autistic man unlawfully detained, June 2011).

One of the unit's ideas was that he should have a person-centred plan. He had to create a wish list, and came up with six things:

  • Live at home with Dad
  • Go on holiday to Somerset
  • Have Christmas presents at home
  • See Toy Story 3 at the cinema
  • Have breakfast in the bacon shop
  • Go swimming at Hampton open-air pool

All six wishes were refused because they were not considered to be in his best interests. To me, that's not a person-centred plan, that's a system-centred plan.

About the author

Mark Neary and Steven in the pool

Mark Neary is a blogger and father to Steven, who has autism and other learning difficulties

A service user, like Steven, is a case and every piece of minutiae from his life must be recorded and analysed. For two years I had to keep logs of everything my son did. I still have 565 sheets of paper, all saying: "Steven had pears, grapes, bananas and oranges for breakfast." For 126 consecutive Mondays, a support worker recorded "Steven watched a Mr Bean DVD with his father."

I was never once asked to hand over the logs I'd written.

One manager explained to me once that everything learning disabled people do must have a value - not too bad until you realise that someone else is setting the value and its parameters are very narrow. Who on high decreed that everything we do must have some value?

I write a lot about the language of the social care world. I love it when I read stuff like transparency because the reality seems to be the opposite. I therefore tend to work on the principle that the opposite of what is being presented is probably closer to the reality.

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If Steven chooses either steak or fish for his tea, he is being empowered”

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But the thing that really gets my goat is when a person's entire life, everything they do, is jargonised.

I was recently comparing with a friend the way I present the everyday norms of my own life with the way the social care world presents Steven's life. We were having the conversation in a pub. If Steven were to go to that pub, or to a gym or swimming pool, for instance, he might be described as accessing the community.

Here are 10 jargon phrases I jotted down on the back of a beer mat, the kind of things which make Steven's life sound even less "normal":

1. I live in my home. Steven's current placement is in the family home.

2. When I make a pizza, I'm making a pizza. When Steven makes a pizza, he's increasing his independence skills (as overseen by an occupational therapist).

3. If I cry, I'm sad about something. If Steven cries, it is logged and analysed by the psychologist and positive behaviour team.

4. If I shout or swear, I'm angry about something. If Steven shouts or swears, it is challenging behaviour and new behaviour management plans need to be drawn up.

Mark Neary and Steven at a theme park Acessing the community aka a day at a theme park

5. If I choose between steak or fish for my tea, I'm making a choice. If Steven chooses either steak or fish for his tea, he is being empowered.

6. I have friends. Steven has a circle of support and influence.

7. If I'm asked what I want to do with my free time, I'm planning my hobbies. If Steven is asked what he wants to do with his free time, it's his person-centred plan.

8. If I make an unwise choice, I've messed up. If Steven makes an unwise choice he may be lacking mental capacity.

9. If I sort my CDs into alphabetical order, I'm being a bit anal. If Steven sorts his Mr Bean DVDs into colour order, he is being inappropriately obsessive.

10. If I eat two Mars bars, I'm being a pig. If Steven eats two Mars bars, he is challenging boundaries.

Mark Neary's Love, Belief and Balls blog

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  • rate this
    0

    Comment number 277.

    @268. To balance that a little bit. Local Authorities have had their grants from Government smashed so are trying to provide services on a shoestring. They are also trying to sell bad Government plans to the general public even though they don't believe in them. Take Payment by Results. Not one of the pilots have been successful but the Government are going ahead anyway.

  • rate this
    +3

    Comment number 276.

    One of the consequences of our victim and litigation crazed society is legally defined processes and terminology.
    Using common sense and doing the right thing is no longer an option.

  • rate this
    +2

    Comment number 275.

    269.PrimitiveMind


    Indeed, so true - politicians come up with nonsense to hide their cuts & re-disorganisations behind, then force public servants to tow the official line on pain of being disciplined....


    ....& we the public complain today about it, but will vote for the same 3 parties at the next election, ensuring we get more of the same in future too....

  • rate this
    +4

    Comment number 274.

    Great article. The rigid processes and form-filling behind the jargon are the problem. We home-educate our 13 year old special needs daughter. Liaison with the Education Service (who don't actually provide us with much support) is a nightmare as they just can't accept there's an alternative way of doing things (ie the way our daughter prefers and works for her) than the way their forms specify.

  • rate this
    +3

    Comment number 273.

    A person-centred plan is all very well but it's cruel to allow people to choose and then over-rule their choices.

    It's a major problem that the social support profession doesn't see how pompous language puts a barrier between itself and the people it is supposedly supporting. It smacks of a lack of empathy and understanding - the very qualities you'd think the profession was based on.

  • rate this
    +3

    Comment number 272.

    There is another problem though, and that's those who see those with disabilities as angels, when they should be seeing them as human beings just like everybody else. I knew some staff who did EXACTLY what the patients wanted, in the manner of somebody pandering to a naughty child, because they knew it would give them a reputation for being really nice. Long term it makes a brat more spoilt.

  • rate this
    +2

    Comment number 271.

    In my town we used to have "Social Care Services". After a transitional period as "Adult Care Services", the department is now officially called "Adults and Communities".

    We used to remark how apt (and possibly programmatic) it was how the social thing, the care and the services have now all disappeared.

  • rate this
    +7

    Comment number 270.

    My step daughter is a 23 year old woman with Downs Syndrome who lives in supported housing and I couldn't agree more about the endless and unnecessary notes and logs that are kept-especially as no one ever reads them!! Excellent article that hits the nail on the head regarding jargon.

  • rate this
    +1

    Comment number 269.

    Thank you Mark for revealing the stupidity of the system in a nutshell - I laughed and cried throughout. Mark and Steven you are inspirational - never forget: society has the problem, not you!

  • rate this
    +3

    Comment number 268.

    263.Mike from Brum

    The issue is that the language is used to hide poor performance, targeting the wrong priorities and suggesting they are doing you a favour when in fact they are reducing the services available to you.

  • rate this
    +1

    Comment number 267.

    254

    Do you get female gonads?

  • rate this
    0

    Comment number 266.

    @175 Fancypants

    "I always ensure that I talk to people like human beings"
    That is exactly the problem of professionals in this field and an expression I hear too often that is the biggest insult ever to disabled people. LIKE human beings? So you mean they are not human but you make them feel like they are? Shameful

  • rate this
    +4

    Comment number 265.

    I've just quit a career in special needs teaching because of this sort of BS. Everything has a defined process which must followed even if it patently isn't in the best interests of the child. Sometimes what is needed is obvious, but no, the process must be followed and its outcome implemented. The will of the state will not be defied!

  • rate this
    +1

    Comment number 264.

    It is depressing when social workers use this sort of language when talking to clients and their families but it is useful amongst professional colleagues. Think about "empowerment". For centuries people with disabilities have been "marginalised" by their families and by society. Social workers realise this and try to do something about it—and it is still a good idea and still needs pushing.

  • rate this
    -2

    Comment number 263.

    Society is looking after someone with difficulties. That's what's important, who cares about the language that is used? Some people need to get their priorities straight and be grateful for the care their child receives. There are plenty of areas of the NHS that would be glad if the only complaint they had was use of language.

  • rate this
    0

    Comment number 262.

    Just remember that these things are not written in English, although the words are English.

    They are written in Bullsh*t.

    Go and buy a copy of Teach Yourself Bullsh*t and study it carefully. Learn to write their language.

  • rate this
    0

    Comment number 261.

    Great article. This lame jargon has had the reverse effect: those in 'authority' take note. Over recent years I've become increasingly angered by this pointless guff and tune out when I hear a limp social worker using it. Displaced public sector folk seeking employment in the private sector (sorry, 'alternative setting') will be handicapped (can I say that?) if they spout this stuff at interview.

  • rate this
    +1

    Comment number 260.

    These rapidiously synthesize innovative communities should competently maximise seamless technologies. They should also enthusiastically pursue value-added clouds which holisticly productise revolutionary infomediaries which, in turn, objectively fabricate principle-centered process improvements

    If only they would compellingly incentivise standards in potentialities, we wouldn't even be here

  • rate this
    -17

    Comment number 259.

    Well I'm sure the leftie do gooders at the BBC have an empathy with the politically correct clap trap that Steven and Mark have to put up with!

  • rate this
    +1

    Comment number 258.

    Every job has its own 'speak'. It makes us feel special, 'in the loop' and superior to those who do not speak it. Detrimental to people care, which most jobs are about

 

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