Autistic Meltdown.
My interest in Autism stems from my days with the Court of Protection. There is a form, a ‘CP3’, on which the GP or Consultant is invited to put ‘simply’ the reason why he thinks his ‘patient’ should have his affairs handled by – in the past the old Mental Health Act – and every time I saw the single word ‘Autism’ there, I bridled. Autism is NOT a mental illness. It may well give rise to problems that meant it was necessary to protect the person via the CoP, but that is not the same thing at all.
There is a school of thought that claims that Autism is an ‘illness’ that can be ‘cured’. I have a problem with that; Autism is a spectrum of behaviours, some of which are very positive and can be beneficial to society – to take just one example, it is unlikely that we would be here, on the Internet, on a computer, discussing this without the help of people on the Autistic spectrum. However, being a spectrum means that there are people at the far end of the spectrum whose difficulties result in behaviour that is dangerous to themselves and others round them.
To say that Autism could or should be ‘cured’ is to wipe out all form of autism, the good and the bad, and arrive at a standardised, normalised, human being, with approved thoughts, approved means of communicating them, approved behaviour. I could never support that.
If not ‘cured’ – what then? Many parents, and it is always parents initially, notwithstanding that many of them may also be autistic themselves for it is not just a childhood issue, arrive at the decision that doing nothing may risk leaving their child entirely ill-equipped to live amongst the so called ‘normal folk’.
They embark upon what is known as ‘ABA’ – Applied Behavioural Analysis. Rewarding and encouraging the behaviour that will help that child, discouraging that which will not. That might sound like normal parenting to you – but trust me, when you are talking about an autistic child, it is parenting taken to the nth degree with skill and passion.
It is a huge, nay a monstrous, commitment in terms of time and energy that occupies every waking moment of that one child’s life. That is assuming you know how to do it; most people don’t. Or rather than don’t – have other commitments on their time; other children; partners; a job even.
Enter the professional ABA practitioners. They may be effective, and produce astounding results with some children, but they are expensive. Tens of thousands of pounds expensive. For a child up to school age, you could easily be talking about £40,000. For a single Mum on benefits, for whom the £40,000 was always out of the question, we are talking about a seven day a week, 16 hour a day commitment to that child.
People do that too, for their child. It’s what parenting is all about. So you can imagine how they feel when after five years the government demand that they part with that child for up to eight hours a day and let the State take over. Will the state continue the hard work they have put into helping their child overcome his/her difficulties? Maybe. Sometimes. Then again, sometimes the State says ‘Nah’; austerity, budget cuts, got chief executives to pay; we’ll just have to see how your ‘different’ child gets on in an ordinary school.
At this point, those parents with a child whose bewilderment at the allegedly ‘normal’ world is so profound that they react with what is known as challenging behaviour to the point where no everyday school could cope, might be said to ‘come off better’ from the system in that the Local Authority have no choice other than to shell out for specialised and usually residential schooling.
It is the parents of those children further down or up, whichever you prefer, the autistic spectrum who really suffer. They are the children who with help could live independent and fulfilling lives – yay, the proverbial dedicated computer programmer – but without help are liable to leave school unable to read or write, nor to control their emotions, nor to understand why they are bullied and ostracised.
Not surprisingly those parents fight that decision. If they have money, with paid professional help to help prepare them for the fight with the ABA Tribunal. They need as much help as they can get; this is a once in a lifetime experience of being pitted against specialised lawyers who spend all their time fighting on behalf of the Local Authorities who really, really, don’t want to spend as much as £150,000 a year on one child when they could get away with £20,000 to quote the case of the boy known as ‘O‘.
It appeared to the tribunal that, for the boy’s needs, a comparison between the schools was markedly in favour of Camphill, while for costs, it was markedly in favour of Edinburgh.
“We were reminded that the local authority has to make provision for children other than O and no doubt this is so, but we were concerned only with O and his parents’ placing request. “Our view was that the development of O’s personality, talents and abilities to their fullest potential was much more likely at Camphill,” the tribunal said.
In that case the parents wishes for their child was upheld. I would see that as ‘a result’ for the child, brought about by the parents. It would seem that some, steeped in the adversarial nature of the courts, see that as a ‘win’ for the parents. Thinking of that sort is what brings me to the point of this post.
On Saturday night, at 7.15 in the evening, or ‘wine’o’clock’ as it is known in some circles, an extraordinary series of possibly wine-fuelled tweets emanated from the Twitter account of a firm of Solicitors called Baker Small who describe themselves as a ‘niche public sector solicitors’ practice‘.
Hilarious the way parents continue to fight for the best chance for their child isn’t it? A couple of hours later, Baker Small was still celebrating and chortling over his ‘result’.
Baker Small seem to see their job as merely saving money for Local Authorities. They have completely lost sight of the child at the centre of this. The sort of sums involved can be seen here:
As an example of possible savings to be made, if the LA in one year used legal representation for 2 SEND appeals for OOA [Out of Area] placements, it would be at a cost to the LA of around £40k. Presuming that one of the appeals was not upheld, with an average cost of £313K over the life of the placement, the average year on year cumulative saving to the LA, taking into account the cost of the representation could be £273k.
Baker Small, (actually one individual called ‘Mark Small’ who is very camera shy) will produce this ‘saving’ for the council for the bargain basement price of £8,000. That was the figure in 2011 anyway.
Some on the Twitter community tried to suggest that whoever was accessing the official account of Baker Small at that time of night might be better occupied stepping away from the computer if not the wine glass. Still he ploughed on: Calling parents who fought for their children ‘the mob’ and saying he was sharing their tweets with his cat…whilst enjoying the football. By the morning, official complaints had gone into the Local Authority involved, and Mark Small was all contrition.
The damage has been done though. Hundreds of families that had near bankrupted themselves to pay for the tests, consultations, therapies, necessary to fight for the best education for their autistic children had risen up in fury. The thought that the man responsible for opposing their needs was sitting there mocking them on twitter whilst ‘relaxing’ at home had driven them into a genuine Twitter storm.
Normally I don’t have any time for the Twitter outrage bus, but in this example it was justified. Matthew Keer did a quick calculation and found that Local Authorities were paying Baker Small somewhere in excess of £1,250,000 to sit at home overlooking his swimming pool with a stack of cat memes and an iPad – and laugh at parents trying to achieve the best for their children.
The Children and Families Act was supposed to make the needs of the child paramount. It wasn’t intended as a game between lawyers and beleaguered parents.
Why are the Local Authorities even using lawyers to stand against parents?
Don’t bother answering that one.
Hopefully ‘doing a Baker Small’ will be taking over from that hackneyed phrase ‘doing a Gerald Ratner’. I’d call that a ‘win’ for the parents.
- windsock
June 13, 2016 at 11:18 am -
In the league table of who has the worst public reputation – journalists? estate agents? politicians? – I see that it is the lawyers who are making the most effort to finish bottom.
My ex-girlfriend has an autistic son by her current partner. After infant school, she took her son out of the school system and home-schooled him (even with the ofsted/local authority visits) because the local authority would not “statement him” (I hope that’s the correct terminology) She has become such an expert on this field of care that other parents – and the local authority itself – now consult HER about best practise. I am so proud of her and can bare witness to the dedication involved in such parenting (and he’s turned out a good lad – now approaching 16/17, so testing times ahead as he makes his way in the world).
- Eric
June 13, 2016 at 11:27 am -
It can be very difficult. I advise parents regularly on how to get the best for their autistic child, online almost always. Not as bluntly as below.
Sometimes it is horrible. One parent, who knew roughly where I lived, said they were moving to a town in the adjacent county, and asked me what facilities were available for their autistic child in that area.
I knew the answer – virtually none (to be precise, they had sent a bunch of Teaching Assistants on a one day training course……) and really I wanted to say, look , don’t come here
- Eric
- Eric
June 13, 2016 at 11:21 am -
I’ve been on both sides of the wall, and in the middle.
(Note: I do not work for a Local Authority, nor do I rate them. This comment is playing devils advocate)
To be blunt, many parents are fighting battles that are completely unreasonable.
There’s two kinds of legal fights at SENDIST (or whatever it is these days, I’m old)
One to make any provision *at all* – some LAs almost literally won’t do anything at all. That’s fair enough. Some LAs just dump kids with complex needs (often into their ridiculous “complex needs” schools. I know what children with Autism, ASD, SLD, PMLD, MLD etc. are going to be roughly like, not “complex needs”. They’re mostly dumping grounds hence the catch everything name)
Some though are fighting for very expensive placements in very expensive schools (some in the US, which are rackets) and should lose but will not accept a “no”. That’s why Local Authorities use lawyers (it’s a good question why don’t they use their own !). Parents take them to SENDIST (whatever it’s called these days) to demand very very large sums of money be spent on their child. I’ve known LA people who are willing to spend a lot of money on a child, but *not* an absurd amount, and the parents will accept nothing other than their preferred choice. Indeed, I’ve personally been told to “f— off” by such a parent who would not even look at the provision in question, despite the LA being desperate to (this parent later appeared on TV saying the LA would not do anything, which was a straight lie). Parents often fixate on school X as the “only one for my child”.
The needs of the child may well be paramount. But the Local Authority is not just one child. It is a stack of children and it has a budget, and it has to make use of that money efficiently. It can throw money at specific cases, but then it will run out. It also has to keep some reserve for a child who might move into the area mid way through the year.
The Number 1 mistake parents make – almost all of them – is they think the LA people are doing it because they are horrible and they don’t care. They aren’t (though many don’t care its disinterest) ; they are doing it because they have to balance the books.
If they recommend that little Jimmy goes to a school costing £200k a year (say) they will have to justify this decision to an internal panel, not just on its suitability for Jimmy but as an efficient use of the budget. Can (they will be asked) Jimmy use one of our own schools, maybe with additional support ? If not, and they have to go out-of-county (which means a paid placement) then how about one which is less expensive ? (annual costs run from boarding school levels up to near 7 figures annually)
Parents want the best for their own child which is in many ways admirable, But it’s not realistic.
Parents will also say things like “well £50,000 a year (or whatever) is not much in terms of a LA budget” and no, it isn’t, but it’s not just *them* and *their* child.
Don’t get me wrong. LA’s waste money. Some of the people there are incompetent beyond belief. Literally. Some of them are absolute sh!ts. Some of them are pathetically lazy. Some are verging on the criminally negligent.
But it’s not that simple.
(I recommend the Simpson’s episode “Trash of the Titans” for those that don’t see the other side)
- Ho Hum
June 13, 2016 at 2:57 pm -
‘The Number 1 mistake parents make – almost all of them – is they think the LA people are doing it because they are horrible and they don’t care’
Agreed. They are all too often put into the position of trying to exercise the Judgement of Solomon, where the only solution open to them is to determine whether of not the cut should be one which is vertical or transverse. And agreed that some parents are living in ‘lala’ land. I remember meeting a couple who were convinced that their child was a rocket scientist in the making. They were very clever, very articulate, and deluded almost beyond measure
But one thing that should be recognised is that the LAs’ task was made much harder by Blunkett’s ‘inclusion policy’
http://www.telegraph.co.uk/news/uknews/1459507/Closure-of-special-schools-harms-all-pupils.html
We were fortunate that my son was, with the blessing of our local Education Services, amongst the latter cohorts to benefit from really specialist residential provision. Without that, we would never have been able to help him achieve what he has. That’s all gone now, and there is no replacement worth the name.
Blunkett’s personal past was no basis on which to determine national education policy, and a lot of people and their children have since suffered their own very bitter experiences as a result
- Ho Hum
- Eric
June 13, 2016 at 12:14 pm -
Yes, people lie to parents and pretend there’s a cure. There isn’t. You can improve qol which many schools don’t do, they just contain. But I felt the criticism of the LAs was unfair. Yes they will fight but they are fighting for magic beans it is QOLagain. What I think when I meet a 6 year old autistic child is, where do we want to be at 18. Not cured, but how do we give thus child the best post 18 existence. I see too many 18 year olds who are large versions of 6 year olds.
I’m mildly ASD myself, so is my son. Both in computers
- Eric
June 13, 2016 at 12:18 pm -
I would add the wondrous results are often highly selective. One well known one , I know someone who got behind the show. Everything was done for show and it was essentially pavlovian
- Tommy K
June 13, 2016 at 3:29 pm -
“a standardised, normalised, human being, with approved thoughts, approved means of communicating them, approved behaviour.”
Autism aside, I am afraid that is the way our society is heading anyway. I think we are all somewhere on the autistic spectrum – it just depends on how you define the spectrum. Some of us are pliant and are able to change our thinking to conform with the state approved standards, which keeps us safe. Then there are the Winston Smiths amongst us…
- Mrs Grimble
June 13, 2016 at 7:04 pm -
“I think we are all somewhere on the spectrum”
A nice idea, but it depends on what you mean by”spectrum”. I’m not up to date with the latest research, but it appears that autistic people’s brains have definate neurolgical differences; autism also appears to have a genetic component. So, by the usual definition, most people aren’t on the spectrum.- Tommy K
June 15, 2016 at 11:17 am -
Indeed, it depends on how you define the spectrum. My son, for example, displays some traits of Asperger’s Syndrome, but not enough for him to actually be diagnosed as having it, Or maybe some doctors would say that he has… It isn’t a simple binary diagnosis. It is not yet clear whether neurological comorbidities are causal or are a byproduct of autism.
- Tommy K
- Mrs Grimble
- Mark
June 13, 2016 at 7:47 pm -
For many families, the reason they request a SEND isn’t for something as fancy as ABA. It will be for things that are taken for granted in other fields. Little, simple things that can make a huge difference. We spent three years trying to get some sort of speech therapy input included in our son’s statement but we’re not successful.
- Ho Hum
June 13, 2016 at 7:55 pm - Eric
June 13, 2016 at 9:54 pm -
When I was talking to parents I had an aide-memoire to check I didn’t missing anything, one of the questions was “does your child have Speech Therapy ?”. It is not an exaggeration to say 2/3 of parents response to the question was a laugh (a gallows laugh).
- Ho Hum
- Wigner’s Friend
June 13, 2016 at 8:37 pm -
Slightly off topic, but I found this to be an enlightening explanation of the “spectrum”:
http://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum
- carol42
June 13, 2016 at 9:09 pm -
My neighbours son is autistic but was lucky enough to go to a special school until he was 11 although the LA wanted him to go to a mainstream school, his parents didn’t think he could cope. He did well and transferred to mainstream secondary school at 12 where he is doing really well and sits his GCSE exams this year, he has exceptional musical talent. I would say he was at the mild end of the spectrum as his autism was not immediately obvious. I don’t know if he is ‘cured’ but so far its worked well for him, the special school was local and I have no idea if it was very expensive but I don’t think so. Sadly it is closing to build yet more houses!
- Eric
June 14, 2016 at 11:38 am -
They are , relatively. No 1 cost in running any school is staffing. A mainstream Primary or Secondary will have classes of 20-30 ish, bit of variance, but about that. Special Schools can have classes of half a dozen (and more TAs etc.)
- Eric
- Kevin
June 14, 2016 at 8:16 am -
Being autistic myself (albeit on the asperger’s end) I think the world would be a far better place if everyone was autistic. Lot’s of great innovation, very little lying, interesting research, no fashion industry, very, very few lefties (if any)… Mind you there’d be very little pointless chat and the chat there is, could (would!) become mind numbingly tedious (but we like it).
Anyway, can we turn this around and try to cure the ‘normals’?
- Duncan Disorderly
June 14, 2016 at 10:44 am -
‘Baker Small seem to see their job as merely saving money for Local Authorities.’
That’s their bloody job. If I hire a lawyer, I expect them to do a professional job of work. Which Baker Small totally failed to do in this case.
- Eric
June 14, 2016 at 11:39 am -
Indeed, in the tweet. But not in defending the Local Authority (though LAs mostly have their own solicitors !). It is the same argument that has been advanced “How can defence lawyers live with themselves defending criminals ?”.
- Eric
- mark phillips
June 14, 2016 at 11:26 pm -
As the parent of a now grown up autistic son, I’m fully aware of the injustices of the system.
From him being forced into mainstream schools thanks to Oxfordshire’s unbending policy (money saving disguised as “inclusivity”) despite there being a leading specialist school for Autistics in Oxfordshire. In fact such a good school local authorities all around Oxfordshire sent children to it, but Oxfordshire itself wouldn’t send a child there…
Then once in mainstream the fight progressed to getting some/any help during lessons. Forcing him into mainstream wasn’t enough, he had to languish there and fail. I wasn’t prepared to allow that to happen. Even step was a battle: Despite being diagnosed and statemented, LSA support of 10 hours a week was the most I could screw out of Oxfordshire. Despite that lack of support he came away with a clutch of GCSE’s.
Then there were the daily/weekly calls from the school who couldn’t cope with his “challenging” behaviour., so I ended up being on call to plug the holes in their support ability. From talking my son down from the Sports centre roof, to turning up at Hospital after the Police had been called to restrain him because the teachers weren’t allowed…. and he’d had such an episode that the Ambulance had to take him to hospital to calm him down…
It ended up with me jacking in my self-employed career in I.T. doing high-end projects (I wrote the telephone Banking application for HSBC Bank, managed multi-million pound projects for the like of Goldmann Sachs and Commerzbank amongst others) and taking a local job picking and packing books in a warehouse just to be close enough to be on call for those times when the school had mishandled him.
In fact one time my son was expelled for lashing out at teachers who were physically dragging him out of a classroom. At the time the Head teacher told me to my face he didn’t believe Autism or Asperger’s existed as a diagnosis…..
So yeah, I know all about the system when it comes to Autistics, how money is the main object and support and the needs of the child are ignored.
How it continues even into adulthood, where the autistic becomes a vulnerable adult, with no-one to advocate for them when it comes to benefits, housing, welfare and money. Where parents are scared witless about dying and leaving their autistic child alone in the world, because the world and the system doesn’t care that their child can’t make rational decisions and can easily end up penniless and homeless. Like so many of the homeless already on the street, that can’t cope in the big wide world without some form of support. Support that doesn’t exist in any way that would benefit the autistic, that lightly supports. Instead support is heavy-handed, it ignores their needs and instead takes over, it intrudes and attempts to control, the very thing that autistics despise and run away from.
All they want is to be left alone, guided and supported with a light touch when they need it, no more than that.
- Eric
June 15, 2016 at 9:54 am -
What’s so bad about Mark and his son’s story is that I’ve heard it, or variations on it, more times than I care to remember (and sadly it’s not even close to the worst ……)
I would say one thing, to any parent who is reading this, that LAs often will say they have “policy X” (“We don’t do statements here” is alarmingly common though everything has now changed of course), that policy usually (conveniently) involves being cheap.
Often they expect you to accept these policy claims as tablets of stone from God, “because they say so” and frequently they have no legal basis at all. Authorities could not , for example, point blank refuse to statement anyone, it was actually illegal to refuse them on this grounds. They work on the principle that parents will not think they could be lying barstewards. Do not assume this.
Rule#1 for Parents at war with LEA : Document *EVERYTHING*. Phone calls, conversations, chats in the playground, letters, events, things your child tells you about school *anything*. If they have a home/school diary make sure you are copying it as you go. Best weapon you can have, because they won’t keep any sort of record and your detailed paperwork versus their “err…..” is a big weapon.
If they did, for example, Mark coming in to sort out their mess every five minutes would be damning in terms of the schools ability to provide for his son, and I bet the ‘dragging out punch up’ was an unofficial exclusion and not recorded as such either.
- mark phillips
June 15, 2016 at 12:58 pm -
Eric,
What I say to anyone that asks these days is get legal representation to fight their case. The system works against you and it’s very hard to cope with fighting the system whilst you try and juggle work and home life and support your child. getting a third party to fight your case for you adds some stability to the situation. Local authorities tend to take professional legal representation seriously.
A bit like my son’s diagnosis. I only got agreement to have him assessed for autism when I mentioned a professional had actually seen him purely by chance whilst on holiday and asked if he’d been assessed. Until then we were bad parents and he was a problem child because of the bad parenting…
- mark phillips
- Eric
- Gaye Dalton
June 14, 2016 at 11:52 pm -
There is also the tiny small matter of the immense harm ABA does…
Trained like an animal to ape a normality you don’t have the internal infastructure to follow through on. To depend on approval and validation you are never going to have the social skills to obtain once your mental and emotional independence has been deconstructed…take you a few higher steps up the ladder before you fall flat on your face…
Adult autistics are in nigh unanimous agreement that ABA is devastating…and live in horror of it.
Parents of autistics most certainly do not always know best.
- Eric
June 15, 2016 at 10:02 am -
Sometimes parents are desperate for a “normal” child, often at the Aspergers end.
An autistic child is like any other person or animal in that they can respond to stimuli and “learn to do things” (like the school that used to teach Unicycling …. seriously !) but they just rule follow. This can be useful in some situations, for example toileting, but often it cannot be contextualised. Often they are begin “taught” things not because they are useful and can make their lives better, but so the person doing the teaching can point to it as a claim of success.
- Eric
- The Blocked Dwarf
June 15, 2016 at 8:15 am -
After reading the comments of my fellows here I am so grateful that my crippled son was ‘only’ born with legs that don’t work so good (diaplegic spastic). That was hard enough- especially because he falls, and always has, squarely between the ‘normal’ and ‘handicapped’ stools for just about everything ie he can’t quite do what others do but doesn’t need any real help.(This is the kid, or rather young man, who is flying off to The Republic formerly known as Basketcasski for weapons training with 9mm automatic/rapid fire weapons when he gets back from a trip to Amsterdam – window shopping….). “dey see how I roll -in ma wheechair- down the Kraachten n dey hatin’ “
I have nothing but admiration for parents like Mark Philips. We, and our kid, got away lucky. Better a f*cked up body than a f*cked up brain.
- mark phillips
June 15, 2016 at 1:19 pm -
Austism is one of the worst as you can have as like my son, some autistics can have normal (if naïve) conversations but fail to do other things competently. It’s usually classed as “being awkward” or something similar and it can cause serious issues between him and people that do not understand it’s not him doing the thing with any malice.
He’s not able to hold down a job and is currently on benefits, but if I ever popped my clogs he’d be vulnerable to cuts or sanctions to his benefit for being awkward or not complying with rules he has no comprehension of. There are no advocates for him when it comes to officialdom other than myself.
I do agree and think a physical disability in some ways is better, because it’s visible.
- mark phillips
- The Blocked Dwarf
June 15, 2016 at 2:35 pm -
but if I ever popped my clogs
Again a fear I thankfully don’t have to live with. When I see how much brain damage a few seconds longer without oxygen can cause, my son got away lightly. Working legs are all well and good (although difficult in the maintenance) but a fulsome, happy life is possible without. Perversely enough, Crippled Son is the son I worry the least about…and not just because he can crush a man’s skull with his bare hands (although that helps) but because he has a FOAD “tude” as big and hard as his former special forces Krav Maga instructor and is fiercely independent. You do not want to be the one who asks his ‘Carer’ if he , Crippled Son, takes sugar….
Although I did point out to him yesterday that answering the door in your boxers is 1. Nekulturny and 2. NOT how he was raised, especially when you’re answering the door to an Official from the Housing Association who has come to check on Health & Safety (like if the sockets are ok…, not if he has been storing live ammo in the fridge).
- Loadsamates
June 17, 2016 at 5:57 pm -
“Being a spectrum” means we are all on it.
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