Psychotic or Frustrated?

I’ve been toying with writing this post for a few months now but have struggled to articulate what I believe to be a massive problem for the autistic. A chance encounter this afternoon has spurred me into action.

I nipped into Poundland on the way home from work today to buy some pegs. I bumped into a young man who was in the year below Steven at school, so I knew him from 1996 to 2007. Like Steven, he has autism but is non verbal as well. Whenever I saw him back in the schooldays, he always came up for a cuddle and loved to be tickled. He was a very placid, sociable boy. He was with his mother today who told me the disturbing story of the past two years. She had tried to contact me two years ago but neither the school or social services would pass on our contact details and were not willing to act as an intermediary either. For Steven’s friend, the transition from children’s to adult services didn’t go well. The expectation from social services was that he would go to a college five days a week to learn life skills. This is not what the lad wanted. The mother, who was a teacher had to give up work because they couldn’t get any support package at all. Two years ago, the normally placid young man erupted and for several weeks trashed the home and was aggressive to all his family members. Social services didn’t want to know. The medical profession didn’t want to know. Round our way, you are discharged from NHS children services at 16 but you do not move into NHS adult services until you are 18. There’s a two year void. We fell into that void back in 2007. The upshot was that Steven’s schoolmate ended up being sectioned in a mental health hospital in Essex for 18 months. He cam back home last November after an almighty struggle by the family, still without support except for a considerable prescription of anti-psychotic medication.

This story is so familiar to me. It happened to Steven five years ago and I know of at least a dozen young men who have been through the same thing.

When it happened to Steven in 2007 he had to wait several months before he turned 18 but then he received several medical opinions: ” a severe depressive episode”; “a possible psychotic breakdown”; “a spell of mental instability”. Having experienced psychotic episodes in my personal life and many times in my professional life, none of these diagnoses seem to fit what Steven was experiencing. It may sound less dramatic but the closest description came from a very experienced classroom assistant at the school. I’ll never forget her almost throwaway comment: “He’s gone from Mr Charming to Mr Frustrated”. Frustrated is exactly what it felt like to me, although I acknowledge that is much less sexy than psychotic.

What happens after one of these diagnoses? Well, normally a spell in a mental health unit (if you’re lucky, one geared for the learning disabled) and the introduction of anti-psychotic medication. And I have a problem with that. For starters, Steven has put on seven stone in the five years he’s been prescribed risperidone; the lad today has put on five stone in two years on the same drug. Is that a price one has to pay? And for what?

As a psychotherapist, I’ve always found the term “breakdown” as unhelpful. The best alternative I can come up with which seems to resonate with many clients is a developmental crisis. Once again, less sexy, but people either come through their crisis or get stuck in it.

Here’s my big question: what happens to lots of young autistic men in their mid/late teens? I can accept that having autism doesn’t make you immune to mental health problems. But the professional world likes to pathologise. The person my be acting out their frustration; their developmental crisis and the only way the world can deal with this is to pathologise the person; hospitalise them and sedate them. The world isn’t really geared to the non verbal or those who have problems verbalising their difficulty, so it’s easy to see how a developmental crisis can be mis-interpreted.

In 2008, after five months of hell, Steven eventually told us what the problem was: “Steven Neary’s not going to school anymore. Steven Neary’s a man now”. He had outgrown school and was ready to move on. But for five months he didn’t have the verbal means of communicating that. From a young boy, even to today, Steven has always had difficulty communicating a statement in the negative; there must be something in the sentence construction that doesn’t compute. He has no problem with “want to go swimming”. But if he doesn’t want to go swimming, he’s more likely to hide his trunks or kick off so it’s not safe to take him out, rather than say “don’t want to go swimming”. I’m sure he’s not alone with this difficulty.

Back to my main point though. I have heard enough stories over the years to know that the transition for an autistic lad from boy to man is potentially traumatic. I also know enough to know that perhaps it is easier? or safer? for the professionals to see this as a medical issue and subsequently pathologise and treat the issue. And then the person is let with a psychiatric diagnosis and a reliance on anti-psychotic medication to treat their crisis.

My question for the blog world is: is this helpful to the autistic person? is the diagnosis and medication a useful response to, what, from other eyes be seen as a developmental crisis?

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It’s Proven – Neil Tenant Lacks Mental Capacity

Sometimes, my son can be a genius.

Two weeks ago, Steven had his mental capacity assessment to determine if he had the capacity to manage a tenancy. It was carried out by his social worker, who we shall call Dusty (the relevance of that should become obvious). She did the assessment in two stages: Part one was a series of questions around tenancies to check his level of understanding; Part two, was two days later, and assessed if he’d been able to retain the information from part one. I’ve not yet been told the outcome but as the assessment was contrived to give the council more clout to pursue their main agenda (making Steven the tenant of our property and usurping my position as his property and affairs deputy), I guess the outcome is a foregone conclusion.

Last night we were having a music DVD session. This is a regular Thursday night event: 20 music tracks by a wide variety of artists. Whilst watching one track, Steven became very excited and animated:

“Dusty was talking about The Pet Shop Boys”.

I didn’t get what he was on about at first but he kept repeating himself and pointing at the screen. We were watching The Pet Shop Boys performing “Rent”. I got it. Dusty must have asked Steven about rent during the mental capacity assessment.

Margi Clarke appears in the video and whenever we watch it, Steven is always intrigued whether Margi lives with Neil Tenant or Chris Lowe. As the video ends with Margi and Chris having a cuddle on Paddington Station, we assume it’s the latter. But as usual, Steven wanted to confirm that Margi Clarke lives with Chris Lowe.

And having sorted that question out, he then said:

“Margi Clarke gives money to Chris Lowe”.

He couldn’t explain any more than that but it can only really mean one thing. There is no other reason why Margi should be giving money to Chris Lowe. Steven must have worked out that if she lives with Mr Lowe, then Margi must be giving him money for rent.

If I’m right, and I’m sure that I am, that must mean that he understands that rent is something you pay for living somewhere. Isn’t that brilliant.

The sad thing is there is absolutely no point in telling that story to social services. They have always dismissed Steven’s ability to communicate a strong message through song. But also, as I said above, it muddies the water of their main intention. The assessment was a contrivance for another agenda. It’s like 2010 all over again.

The first line of “Rent” is: “You dress me up – I’m your puppet”.

I know how it feels.

Musical Chairs

Good news. I’ve finally ordered Steven his new sofa.

I picked up a catalogue from our local store (I didn’t want to run the risk of Steven trying out several sofas for size in-store) and brought it home to show Steven.

The sofas have all got female names: Chloe, Marigold, Bronwyn, Fenella. Normal names but carrying a slightly saucy ring when applied to a sofa.

After three minutes of browsing, guess which one Steven plumped for?…….. A Lola.

Nothing to do with the smooth upholstery; the firm springs; the delightful selection of colours.

No, he chose a Lola, so we can sing: “Her name was Lola. She was a showgirl……”

Have I set myself up for years of agony, where everytime someone sits down on the sofa, Steven gets them to sing a quick chorus of Barry Manilow?

“Life in The Neary Household – The Musical”, will shortly be coming to a theatre near you.

Choice & Meltdowns

We read a lot these days in the social care field about choice and flexibility. Every new iniative tends to get framed in these terms and the presentation is that it is always a good thing. Who could argue that having a choice over aspects of the care package is bad? Who could argue that having a flexible care package is not good? For this post, I’ll gloss over the reality for many people that what is presented as a choice turns out not to be a choice at all. Or turns out to be a choice of having shit on toast or vomit on toast for lunch. And we’ll also gloss over many people’s experience of flexibility as feeling less in control of the care package then ever.

No, the point of this post is that for some people, choice and flexibility, even when it is genuine, is not necessarily a good thing for them. For Steven, and many autistic people I know, their foundations have to be routine and predictability. Too much flexibility can be overwhelming. Too many choices can trigger a terrible anxiety meltdown.

Yesterday, ITV2 screened a back to back double bill of Toy Story 1 and Toy Story 2. Steven saw the trailers and immediately was dead excited. However, as the total viewing time was nearly four hours, I knew that something in the normal Sunday routine would have to give: we just wouldn’t have the time to fit in four hours of Toy Story and the usual stuff. So, I gave Steven a choice of what we miss: the swim at the Mencap Pool or the Sunday afternoon 2 hour Take That session. It set off a meltdown. It was stupid of me to offer a choice; it would have been better if I had made the choice. In the end, Steven settled on going swimming but was unsettled all day about missing the music session. Trying to be flexible, I suggested we did the Take That session today instead. That didn’t help the meltdown at all – Sunday is Take That day, not Monday.

This week we are trying out two new swimming pools with the intention that whichever one Steven likes best, we’ll take out a membership for. But I know that if I ask him to make a choice between the two, it will be problematic. Therefore, it feels better to gauge his responses whilst he’s there and select the one he seems to prefer.

Making a simple yes or no choice doesn’t seem to prompt an anxiety (unless it involves intruding on the normal routine). So, a question like: “Shall I get the Hootenanny Singers CD?” is okay because the answer is yes or no. However, if I said: “Would you like either the Hootenanny Singers CD or The Hep Stars CD?”, that would not be okay.

It’s funny, when in a climate of personalisation and person centred plans, the escence of those concepts can be very problematic for the person they are meant to be liberating.

The Woman On The Bus (24 Hours Later)

I’ve been gobsmacked by the response to my post yesterday: “The Woman On The Bus”. In less than 24 hours it has received a record number of views. It has also attracted a huge number of comments on the blog, on Twitter, on Facebook and by direct message. The comments all carry the same message: “Report it. Report it. Report it”.

I can see that my final paragraph where I wrote “what’s the point in reporting the incident” was misleading. It was always my intention to report what I witnessed; in fact I was up until midnight last night composing a letter to Hillingdon’s safeguarding adults team (I’ve also cc’d in the CQC as well). It was never an option for me to report it on my blog and then do nothing.

My “what’s the point” statement comes from my extremely bitter experience since 2008. I feel that in all likelihood, absolutely nothing will happen at all. A huge investigation machine may clunk into action but the machine is about a process, not about action. Not about action for the person who has been on the receiving end of the treatment. At worst, my report will be seen as an attack and I, and the woman on the receiving end of the abuse will be perceived as the problem. The PR team will be just as active as the safeguarding team.

Do you think that I’m a cynical, bitter old bastard? Here are just some of my experiences of reporting something (formally and informally) or making an official complaint since 2008:

* In July 2008, Steven was attending the positive behaviour unit as a day client. One day he was kicked three times and had a cup of coffee thrown over him by the shift leader on duty. When the social worker informed me of the incident, she led me to believe that it was another service user who had carried out the assault. I might still be believing that if the police hadn’t carried out their own investigation.

* In July 2008, Steven was arrested at Heathrow after being left by a support worker. The support package had only been in place for three weeks. The CCTV footage shows that the support worker had left Steven for at least 13 minutes; he was more interested in talking on his mobile than caring for Steven. Subsequently, Steven got himself into trouble and police and their dogs arrived on the scene. The council launched an investigation and one thing that transpired was that the agency didn’t have a license toi provide the type of work that they had contracted to. Clearly, either the council hadn’t checked or the agency had misled them. Whichever, when Steven was held at the unit under the DoLs two years later, it was a shock to find that the same agency were supplying the bulk of the support staff. Steven has a police caution on record but for the council and the agency it was business as usual.

* In early 2009, Steven told me the horrendous story from his time at the unit as a day client in 2008. A member of staff thought that it was hilarious sport to throw Steven’s shoes out into the muddy garden and sending Steven out to retrieve them in the pouring rain. I reported the incident but never heard a word about any action taken.

* It’s February 2010 and Steven is three months into his year long unlawful detainment at the unit. Regular followers of our case may remember the infamous email from the social worker to her colleagues that was read out in court and attracted a lot of press attention after (“There’s always somehting or other with Mr Neary…..”). Her email was a response to me reporting that another service user repeatedly pulled the ties and zips from Steven’s clothes with the result that all his trousers, shorts and trunks kept falling down and his coat wouldn’t fasten. Because I became the problem by complaining, the matter was never addressed and for the rest of the year, Steven’s trousers remained around his ankles. The issue became framed as “Mr Neary having an issue with the care that others give Steven”. On this incident, that was true but the problem still needed attention.

* April 2010 and the professionals held a meeting. This was the meeting we discovered in court where they made the decision to move Steven away and not let him return home was made. There were 10 people at the meeting and two people openly challenged the decision. They were never invited to another meeting.

* April 2010 and one of Steven’s support workers complained about the attitude of one of the shift leaders towards Steven. For the next two weeks there was a concerted effort to get the support worker removed from the team and I had a hell of a fight to keep him. The council leant on his agency – it was horrid. Sadly, they got their way a year later and in a vile move got him removed from Steven’s support (I’d love to reveal the details of that but it would be breaking his confidentiality). Steven also paid a price too from the shift leader for the complaint. At the time, the unit were introducing a timer alarm that they thought would help Steven manage anxiety about when things start and finish. A whole set of instructions were drawn up and in fairness, he took to it very well. One of Steven’s regular support workers told me that at 8am one Saturday, Steven asked the shift leader if he could watch a Mr Bean video. The cow set the timer for four hours hence, which also conincided with the time I was due to arrive for a visit. Four hours for no good reason is also abuse to me.

* Finally, there was the consequences of Steven’s two escapes from the unit in 2010. On both occassions, I complained that the unit had failed in their duty of care but it was Steven who carried the can. His April escape led to the first of the Deprivation of Liberty authorisations and he was stopped from going out for 6 weeks and engaged in “meaningful activities” like mopping the floor and walking 6 times round the garden instead. When he escaped at 8pm one Sunday night in October in just his pyjamas, the council used that as an opportunity to step up their plans to move him to Wales. I have read both the investigation reports – they are shite. No responsibility; no accountability. Lessons are learned but only by framing Steven as the problem.

* And of course, all the staff involved in the illegal detention of 2010 are all still in post; some promoted. I don’t buy the argument about “collective mistakes” – that lets people off the hook. I’m certainly not interested in witch hunts but the service user must come first. Sadly it’s usually a case of the corporate closing of ranks.

Oh, and by the way – the head of the safeguarding adults team who will receive my letter about the woman on the bus just happens to be the lead officer of the supervisory body concerned with the DoLS. He is the chap who actually signs the authorisations. The same chap that was given such a hard time by Justice Jackson in court. I’m sure he will really welcome hearing from me.

The Woman On The Bus

Three and a half hours later and I’m still shaking with rage at what I witnessed on my bus journey home earlier.

I was waiting at the bus stop and a woman walked up and stood next to me. She was in tears. I’m pretty sure she was autistic. Several paces behind her was her carer, chatting away on her mobile. The bus pulled up and the carer walked ahead of me and the woman and got on the bus. I stood back to let the crying woman on. The carer grabbed her by the sleeve of her coat and pushed her into a seat. The carer then sat herself down across the aisle, even though there was a seat next to the woman she was caring for.

For the next ten minutes, the woman got more and more distressed and repeatedly said to the carer: “Are we going to the doctors?”. The carer sat staring straight ahead and didn’t once answer her. The woman started rocking and then started to slap the back of the seat in front of her. The carer started to compose a lengthy text.

I’d had enough. I leaned forward and tapped the carer on the shoulder nd said “excuse me”. Three times she ignored me. Eventually she turned round. I said: “Can’t you say something, anything, to reassure her? Like, are you going to the doctors or not?”

The carer started poking me: “DONT. TELL. ME. MY. JOB”.

She repeated this three times.

The bus pulled up at a stop in the High Street and the carer got up to get off. She didn’t say a word to the woman. The woman left the bus screaming.

Is there any point reporting this to the local authority? I can guess where the home is – is there any point in reporting it to them? The answer to both questions is probably not.

Why It’s Important To Listen To Families Part 798

I came back from work early yesterday, determined to do some new flat hunting, only to find a strange scene awaiting me in the bathroom. The toilet pan was full of Steven’s Diprobase cream. We have tubs of the stuff and there must have been the contents of an entire tub down there. Also, several of the deodorants, bubble bath bottles etc were also smeared in the stuff as well.

Steven came back from swimming a little while later and I called him up to the bathroom. He smiled and said (as if it was the most normal thing in the world) “Steven’s been playing Mrs Doubtfire”. Cue a large penny dropping. he was acting out one of his favourite scenes where Robin Williams gets caught without his Mrs Doubtfire face and slams his head into a large cream cake for disguise!

An hour later we are watching our regular Tuesday Mr Bean episode and Mr Bean has brought a new TV that he can’t get to work. He hits the top of the telly. Steven looked at me and said: “Like Steven Neary at M House”. I remember the incident well and how pissed off they were at the positive behaviour unit. They had just brought a new large LCD TV and had unpacked it from the box, when Steven went over and bashed the top of the TV. You can imagine, that went straight into the “risk behaviour log”, when probably Steven believed that all new tellies needed a good thump to get them started. If it works in the world of Mr Bean……

There was also the other famous incident at the positive behaviour unit where in their report as justification for sending Steven away to the hospital in Wales to assess his “unexplained incidents of concern”, they included Steven “throwing” jars of marmite, sauce, coffee on the floor. If they had asked me for an explanation of the unexplainable, I would have told them about Mr Bean preparing for his New Years Eve party and dropping all of the afore mentioned items of his living room floor.

I know it’s tricky but Steven gets a lot of his life learning from Mr Bean, Basil Fawlty, Gary and Tony from Men Behaving Badly and the drag queens from Priscilla Queen of the Desert. Not the greatest of role models perhaps but it’s all real life to him.

Forget mental capacity assessments. Forget behaviour logs. There is usually an explanation. Just ask. And Listen.