I will not be silenced.
I knew I was rattling cages.
I knew I was poking a bee’s nest with a stick. Or more accurately smacking it with a hammer, but there was honey inside. That rich, sticky reward was getting my daughter out of a cell in which she was fed through a hatch and I had to kneel on the floor to talk to her.
I knew I could end up getting stung. But what would my pain be compared to that suffered by a 17-year-old autistic child, who when distressed resorts to ripping her clothes into strips that she then ties around her neck, only to then suffer the humiliation and degradation of men holding you down, stripping you naked before finally giving you a heavy nylon suit to put on?
I couldn’t dream of a punishment that would get close.
So, I kept hitting that nest.
Like any bee’s nest, it was made up of multiple layers of paper. Those pieces of paper were documents written by St Andrews Hospital, Children’s Services at Walsall Metropolitan Borough Council and NHS England. The tripartite of failure.
The story of Bethany’s life is a long one. It doesn’t go along the normal lines of birth, school, friends, family holidays, birthday parties and Happy Christmases.
Her story begins before birth. At some point when her brain formed the wires got crossed up a bit, neuro pathways didn’t lead where they should. She was made differently. That’s nobody’s fault.
Because of this Beth’s life is measured differently. Her journey is one of early involvement with a nursery school’s SEN provision, exclusion, the involvement of Walsall Social Services, Camhs, and then a catalogue of broken residential schools, units and community placements, and finally police stations and the criminal justice system as people failed to control her rising aggressive behaviours.
The way Beth’s brain developed means she is Autistic. She doesn’t “have autism”, she doesn’t “Suffer from autism” (she suffers from idiots!).
We didn’t get this diagnosis for quite a few years. Instead we were told her issues were due to “Poor Parenting”. Social workers told us we weren’t being firm enough with her, that we didn’t use boundaries when we should. Odd that, because we were using the same strategies that had worked with her older sibling. In an attempt to prove Social Services wrong, we went to town with Supernanny. We read all the books and watched all the programmes. We also did Triple P parenting classes on the bequest of the social workers.
None of it worked. If Beth hit her brother she would go and sit on the naughty step unprompted. She would take a favourite toy and put it away where she wasn’t allowed to play with it. She would shout or hit, then put herself to bed. We knew we were doing the supernanny stuff right as her brother became, and still is, a model of exemplary behaviour. The strongest expletive ever issued by him, and he’s now 21, is that dreadful 4 letter word — “Gosh!”.
Eventually we had the label of “Atypical Autism” applied to Beth. Social Services loved this, for initially it appeared that their understanding is that it can be dealt with by parents simply using more boundaries. They sent mum on another Triple P course. In all she did it 3 times!! Still nothing worked. Each day after school we had to face the infant school playground mafia whose offspring were paraded up and down in front of us — “Go on Jonnie, show him where she hit you with the table she threw.” ” Rebecca, show the man where Beth battered you with the fire extinguisher because she wanted the playdough” etc.
We put more and more boundaries on Beth. We stopped her going to birthday parties if she played up. Infant school banned her from going on trips or taking part in Nativities and plays.
A move into a school for children with Emotional Behavioural Difficulties soon followed. This was a disaster! It was here that Beth learned how to swear, curse and generally be more abusive. Her little tool bag of disruption was well and truly filled up with horrors including making racist remarks (she didn’t understand what she was repeating — she called her white teacher the N word for example.) This placement collapsed as they failed to manage her aggression and it was here the police were first called to deal with her.
Eventually, as she got older, due to the escalation in aggression and violence, we had to admit that Beth was beyond our control. She would go into uncontrollable rages and lash out at anyone. It culminated one day when she jumped out of a window at home and assaulted a woman walking by. She went to an ATU in Bury under our parental admission. Here they sectioned her and it took months to get her out. We only succeeded because another patient burnt the unit down and Beth was returned home whilst a move to a residential school was finalised.
In this new setting Beth did well. She was in a unit next to the school and would go there full time before going home to a large house in the grounds shared with another pupil.
It was in this setting we came across Pathological Demand Avoidance or PDA. I’m not going to go into great detail about PDA here, as there are many arguments around as to its recognition, name and presentation.
All we knew was, as we read the description on the National Autistic Society PDA page that they were describing our daughter; -
Avoids everyday demands, giving excuses
Appears sociable but lacks understanding.
Likes role play
Hugging becomes pinching or hugs you whilst telling you “I hate you”
Doesn’t recognise why others have more control — why can a parent tell me what to do?
A need to be in control at all times.
And then there are Meltdowns. Beth has massive, explosive tantrums when she totally loses her ability to control what she does.
This is because Beth is massively anxious. Imagine you are a female late at night walking back to your car which is parked in a multi-storey in a dodgy part of town. As you walk along you hear footsteps approaching you from behind. The lights suddenly go out. How would you feel? Anxious? That level of anxiety is Beth’s everyday background level. It’s what Beth would call the state you and I call calm. It only takes a little thing to tip her into a more anxious state. A loud noise, a change in routine, being TOLD to shower or go to bed.
The worst strategies to employ to someone with PDA traits are BOUNDARIES!! So that’s why for years Beth had struggled!!!
A boundary is an order imposed on you by someone else isn’t it? So, let’s recap — Everyone involved in Beth’s care is using boundaries. Beth needs to be in control and can’t understand why someone else has the right to be more in control than her. Losing control makes her anxious and being too anxious leads to meltdowns where Beth gets aggressive etc.
We were doing all the wrong things weren’t we!
Attached to the school was a clinical psychologist. We approached her with our wonderful news but were shot down in flames as she dismissed the diagnosis stating it’s not recognised so she cannot possibly be diagnosed as having it. We bought it up in Looked After Child reviews, and every other meeting from education planning to care planning. The powers that be would not agree to our proposed change to her diagnosis.
At this point in Beth’s care we had her home every weekend and holiday. We began using PDA strategies with her. We gave her options instead of orders. For example, if we wanted her to be in bed by 9pm, we asked her whether she wanted to go either 7pm, 8pm or 9pm. Guess what she chose?
We used humour, we used singing to distract her if she started to wobble. We call it starting to wobble, as she often starts to rock gently. We would get her to dance or pull a face to divert her attention and allow her to regain control. And we always had a plan B, and often a plan C and D. If Beth said she wanted to go horse riding, and when we got there it was clear she was anxious, we would offer her swimming instead rather than making her ride horse she didn’t want to just because we had paid for her to. If Beth started to get anxious over something one family member wanted her to do we would quickly get another person to step in and take over thus removing her anxiety trigger until she had calmed. It wasn’t easy and we often got it wrong. But when WE did it right it worked. She was a pleasure to be with once again, A joy, A ray of sunshine and bubbles, and she was happy!
Still the powers that be would not agree because in school and in the unit, she continued to escalate her behaviours. Because they were insisting on boundaries!
Eventually the school stated they couldn’t cope and the placement collapsed. A rush into another placement meant it was poorly chosen and it only lasted a short time. In total around 17 placements came and went in a few short years. In this process Beth had simply been taught that if she felt anxious in a placement because they couldn’t meet her needs around PDA, then all she needed to do was be violent and the placement would end. The more violent the quicker it ended. They taught her that by failing to meet her needs
Beth also found another way out of placements. The police.
If you attack staff or another young person often enough, or hurt them, the police are called. If you then attack the police a very predictable pattern occurs –
Firstly, they sit on you, lots of them sit on you. I have seen 8 officers struggling to hold her to the floor. Beth likes deep pressure. It gives her an endorphin release that helps calm her in the same way a cuddle helps us neuro-typicals. So being sat upon is a good thing.
Next, they take you away from the situation — which is what you wanted in the first place.
Then they put you in a cell and give you food and hot chocolate to drink — Bonus! You are fed and watered, and in a safe place. Then your parents come and the anxiety reduces because you have regained familiarity.
Finally, you say how sorry you are to the sergeant. He wants you out because they think you are mentally ill and not all police officers are any good dealing with that. Plus, you have traits of PDA, your apparent show of remorse is only superficial as you are so skilled in appearing socially competent that they don’t realise you haven’t a clue what you are agreeing to when you sign a lengthy police warning.
When everyone has calmed down including the once hysterical staff, you go back to the unit. Because tomorrows another day isn’t it?
The ability for the police to deal with Beth via cautions was quickly exhausted. She was charged with offences including assault. In court the charges were removed when her autism was explained. We knew this was only going to last until she got worse or really injured somebody.
With massive reservations, we agreed for Beth to go into St Andrew’s Hospital in Northamptonshire. Its an Assessment and Treatment Unit. We were told she would spend time there for her medications to be evaluated and changed in a safe, secure environment. We were told they could treat her.
A date was given for her to enter SAH in early January 2017, so at least we would have Christmas together. Beth loves Christmas. It’s both a time of anxiety as the normal routine changes, but it’s also a time she finds magical. She loves presents, family visits, trips to Christmas Markets and lots of singing carols. So, one last big Christmas together was planned. If only that had been the case.
Just a week before Christmas we were told by the Walsall M.B.C. that due to a bed becoming available, Beth would enter SAH on 20th December 2016.
What type of care begins by denying a child in this way? We were devastated. There was nothing we could do to stop it.
The treatment of Beth in SAH is well documented on Twitter, look for Bethany’s dad twitter.com/@jeremyH9406697 or listen to the harrowing documentary from Lucy Adams on Radio 4’s File on 4 Transforming Care — Is it Working? https:// www.bbc.co.uk/programmes/m0000mkd
In a nutshell, in June 2017, SAH stated they had completed their assessments and stated Beth’s needs would best be met in the community. Work began on finding that placement and soon after Beth was assessed by a care provider called Alderwood Care. On the very same day the assessment took place Walsall L.A. decided that they felt her needs would best be met in a Medium Secure Unit. They cancelled the outcome of the assessment. We later were told that Alderwood felt they could meet her needs entirely.
The subsequent assessment to see whether a more secure environment was needed concluded that it wouldn’t, and actually what Beth needed was still a community placement. Too late though. The bed at Alderwood had been given to someone else.
Walsall M.B.C. therefore commissioned the creation of a very bespoke care package. By November 2017 a house was found just 3 miles from home. Alterations were made to it that included making it secure and safe for Beth. Staff with the skills to manage Beth’s presentation were selected. It sounded ideal. The date to move was given as June 2018 at the latest. We were overjoyed.
SAH had by now changed her diagnosis to agree with our view that Beth has Autism with Traits of PDA. Between Nov 17 and Jan 18 staff strategies were being used that were helping Beth prepare for the move. She went from spending most of her time in seclusion with the door locked to going out into the hospital’s various cafes, its shop and garden centre and its tranquillity courtyard. She was allowed to visit and hold the rabbits in the pet area. On two occasions we were able to take our dogs to see her and we enjoyed time with Beth walking them in the grounds. Progress was being made! Beth was a different person well on the way to freedom.
One of the golden rules with managing Beth’s anxiety is DON’T TELL HER WHATS GOING TO HAPPEN!
She cannot handle the anxiety caused when she is aware of something in the future. Birthdays and Christmas are times of really high anxiety.
In January this year somebody told Beth that she would be moving. All she was told was she was moving to another placement in the community.
Now, if I told you, a neuro-typical adult, that at some point in the future you are going to move house and that’s all the info I give you, how would you feel? Not only that but I don’t tell you where in the country your new house would be, nor if it would it be close to your family. I don’t tell you if you would you be allowed to have your beloved pets there. I don’t tell you what your new house looks like. I don’t tell you if you are sharing your new house with other people. What would that do to your state of mind?
Now apply that exact scenario to my precious ticking time bomb of anxiety that is Beth.
She rapidly reversed her progress. She was fixated on the move. Totally and utterly obsessed. Any phone call or visit with Beth was just her begging for information and updates. She was consumed making lists using the Argos catalogue of items she must have. They would have furnished a 2000 room hotel.
She constantly bombarded staff with requests for information and demanded to be allowed to phone her social worker and us for information.
Everyone was forbidden to tell her anything. So, everyone was refusing her requests.
Remember that need to be in control? Remember that trait of PDA that is Obsession? Remember the need to manipulate people and situations? Remember that she cannot understand why people are able to have control over her?
It was all denied her.
She fell apart.
Remember that Beth had managed on several occasions to accelerate the ending of a placement by drastically increasing her aggression and violence. She resorted to these tactics. SAH reacted by containing her behaviours by locking her away more and more. She was spending over 23 hours a day locked in a cell. Beth was never going to back down. It’s not she won’t. Its she CANT. That’s PDA.
The placement provider withdrew the placement.
As a parent it was utterly devastating. Losing the hope. Losing the chance to have Beth back near to us after years of driving each week to Bury, to Preston, to South Wales and Northampton from our home In Birmingham. We had so been looking forward to life with Beth back in familiar surroundings.
Walsall M.B.C. again sought a medium secure unit as SAH kept stating their inability to meet her needs. Again, it was made clear by experts that she would not benefit from that sort of care.
Nothing was moving and we saw Beth deteriorating before our eyes. She began to talk to imaginary friends. Her self-harm escalated.
I could not stand by and watch any longer.
Luckily at this time Beth’s mum was speaking to a friend in a similar situation and mention was made of Radio 4 planning a radio item about Assessment and Treatment Units.
I contacted them and the programme listed above was recorded. Beth gave her permission for this to happen. Beth does not lack capacity and was therefore able to consent. I was glad to have vented my anger and frustration and hoped that maybe somebody would do something.
On the day the show aired I was made aware of the interest in Beth’s plight occurring on Twitter and I joined in.
I posted about her situation in the hospital
I berated Walsall M.B.C. SAH, and the NHS for the appalling situation. I drip fed info I knew would chill people to the core. I held little back. I told the truth.
Between Tuesday 2nd Oct and Friday 5th, I kept at it. It felt great. People were appalled and suggested ways of helping. I had offers of help from around the world. I had support.
On the Friday afternoon I received a call from Walsall L.A. Social Care. They were claiming I was harming Beth by identifying her through posting details on Twitter. They told me they were notifying me that they were taking out an injunction against me to ensure Beth’s privacy was respected.
I was able to carry out more twitter activity until I actually received the summons on the evening of Monday 9th October. It told me and my ex-wife to appear in the High Courts of Justice in London on Thursday 11th of Oct at 10.00.
This immediately put me into panic mode. High Court! In LONDON!! IN 62 HOURS TIME!!!
First off, a call to my ex -wife, I won’t name her. We get on really well over Beth’s situation but having to admit she was being dragged into court because of my actions was difficult to say the least. I knew the risks when I started. She hadn’t had the slightest bit of involvement in anything I put out on Twitter nor anything said by Radio Four. She was utterly distraught.
This got me thinking, if this is also aimed at the ex-wife of Bethany’s Dad and NOT at the BBC who equally diverged info about Beth then there clearly was something wrong.
Surely if I needed to remove info about Beth, then the BBC should have been named on the Order to attend as well?
My personal view is that Walsall M.B.C. didn’t seek the same action against the BBC for 2 reasons.
Firstly, they were not going to risk taking on the might of the BBC’s legal team and its expertise in laws relating to releasing information publicly about somebody.
Secondly because they didn’t feel there was a strong enough case. They were after all rushing into court and lacking time to prepare in the same way I was being rushed into shutting up.
None of that stopped the blind panic I felt.
I was banned from posting information about Beth or the case or discussing it outside of those persons named on the order.
I wanted to shout out on Twitter exactly what had happened but daren’t. Instead I chose to fully comply with their request.
Luckily, I had posted on the Friday about the threat to serve an injunction so most people when they read my tweet that simply stated “I am currently unable to comment on this matter” correctly interpreted and realised I was facing the threatened action.
People shared this dreadful attempt to silence me far and wide.
I had advice given me to contact Catriona Filmer, The Head of Legal at Mencap and the Head of Pro Bono at Fieldfisher.
Within hours this wonderful person had engaged not one but two Barristers on my behalf and as I did not meet the criteria for Legal Aid, the help would be on a Pro Bono basis meaning the work they were undertaking for me was going to be without charge.
Team Beth was born.
Oliver Lewis, Barrister at Doughty Street Chambers who practises on Mental Health and Disability, Court of Protection cases as well as International Human Rights cases.
Victoria Butler-Cole is a Barrister at 39 Essex Chambers. She specialises in public law and has particular interest in mental health. Appearing in the Court of Protection work she has been described as a “star performer” and a “very persuasive advocate”
Without Twitter I never would have had such eminent, knowledgeable, and convincing counsel. They are also bloody nice people!
They tolerated my painfully slow responses via email and my inability to retain info for longer than a goldfish due to my mind just being overloaded.
The three of them worked with me to provide the best possible counter to Walsall MBC’s accusations.
I supplied copies of care plans stating how Beth needed to be in the community, I gave them copies of the note Beth signed allowing me to use social media to tell her story. I emailed them copies of reports showing my presence at every type of meeting from Lac Reviews to CTRs. I gave them copies of reports stating Beth has capacity and had chosen her own solicitor to represent her MHA rights in tribunals.
I cannot disclose what happened inside the court. It was a private hearing.
I can tell you how I felt. I felt understood. I felt my views were heard. I felt my case was put over in a way that fully countered what Walsall were claiming my actions were doing to Beth. I felt terrified yet supported by those around me.
I felt afraid. Afraid that the case would be adjourned for weeks whilst guidance and evidence was obtained. Afraid that doing so would delay me getting the help for Beth she needed immediately. I felt amazement I was even in this situation given Beth would turn 18 in just a few weeks and the whole issue of consent would disappear.
I felt I wanted to shout out as Walsall MBC’s statements were made.
I felt I wanted to cheer as MY witness statement was read out. I had a voice in the mightiest court in the land for children like Beth.
I felt as though the whole process was never about Walsall Metropolitan Borough Council wanting to protect Beth from actual harm and protect Bethany’s Rights. I felt that Walsall M.B.C’s sole intention was to protect themselves. To shut me up, to stop me banging on about the shocking care my daughter received. To stop me shaming them.
I felt I wanted to give the Judge a hug or a high-five when he allowed Walsall M.B.C. to withdraw their application for an injunction.
I felt overwhelmingly grateful when the Walsall M.B.C. were ordered to pay a Pro Bono costs order to the Access to Justice Foundation meaning they can do even more to support people in my situation.
I felt a massive sense of achievement when the Judge stated that Walsall MBC’s application was “ill-considered.”
I felt good.
As I boarded the train back to London, A young woman sat down opposite me. She looked at me quizzically and asked with a laugh “What are you SOOO happy about?”
And I could tell her.
Bethany’s Dad. October 15th 2018.