There has been a lot in the news recently about autistic people being held in mental health institutes. This has actually shocked many, as the general rule is the parents have a gagging order and are unable to speak out publicly about what is happening to their family members. This in itself is shocking, as if something needs to be secret then surely it can’t be right. If no harm was being done then why the secrecy? It is also dangerous because with things being kept secret, doors are being opened to abuse with no one knowing. No one can speak up for the child if no one knows about them. People are starting to wake up a little to the fact this is happening today. In 2018. Not years ago in history. Now. Let this media interest continue as this fact needs to be known.
The statistics are shocking. Sky news have revealed that at least 40 people with a profound learning disability or autism have died while admitted to “barbaric” secure hospitals the government has promised to close since 2015. 9 of these were under 35! The number of children held in these places has doubled since 2015. Doubled. 60% of patients in ATUs have been admitted for more than two years and 16% for more than a decade.
There is the recent case of Bethany, a 17 year old PDAer locked up in a padded cell. This is because of meltdowns where she has attacked staff. Reading about her experience I am thrown back to memories of my son in primary school. Times where his meltdowns due to overstimulation and sensory difficulties were dealt with inappropriately and punished due to a lack of understanding. Times where he unfortunately lashed out due to the way he was handled. This is what is happening to result in these children and adults being secluded. They are having meltdowns due to their environment or the way they are being wrongly handled and these meltdowns are being punished with seclusion. Seclusion that goes as far as no human contact, meals passed through hatches and family visiting behind closed doors. This conjures up prison like environments. In fact, even prisoners, criminals, are given more freedom than this!
So what is happening? Why are families ending up in this situation? Why are autistic children and adults sitting alone in cells with no physical contact from their families. Is it fear? Is is ease? Laziness? Lack of understanding? Probably all of them mixed with a wrong environment choice.
I say this because meltdowns are a part of autism. The autistic person does not mean to have the meltdown. It isn’t their fault. They are not in full control of what they are doing at the time. They need understanding not punishment. They need an environment adapted to help them not become overstimulated and highly trained and experienced staff to use adaptable tactics. No two people are the same. What works for one wont work for another, especially if they have PDA traits in which case what works for one will have the opposite effect for them. This is why we end up with so many misunderstood PDAers in this situation. The autism specific tactics being used with clear routines, specific things happening at specific times and clear demands are highly anxiety inducing if you are demand avoidant. One problem is the lack of training and another the lack of recognition. Staff trained to work with autistic adults will struggle when they come across a pathological demand avoider because they are so opposite and many won’t be diagnosed with PDA due to a lack of recognition in a lot of the UK. They will simply be labelled autistic which demands a whole set of rules from those caring for them that contradict, in whole, the way they need to be cared for. A pathological demand avoider needs to feel in control of the situation or the very real anxiety brought on by many situations will get too much for them. Why then are children and adults who have PDA being placed in environments where they have no control over their day to day lives. Places that put more demands on them than normal. Why are they being punished for behaviour that it is so obvious to expect due to the way they are being cared for, which is in the opposite manor to they should be.
This is the case as our kids get older and it is the case for many when they are younger with regard to schools too. Too many autistic children are placed in the wrong school environments where they are being punished for meltdowns due to their environment. Many being placed in seclusion in school or even in PRU’s as they aren’t coping in the classroom yet parents are fighting for years for their children to be placed in an environment that does suit them. When will autistic children and adults that need it, be placed in environments that help them? Why do parents spend their life fighting wrong decisions made about placing their children, in some cases with parental responsibility being taken away from them in order to do so?
I fear for my own children. I’m scared of the inevitable meltdown in the wrong place at the wrong time. I fear for my daughters undiagnosed PDA which is looking like it will end up an ASD diagnosis because of where we live. A diagnosis that could put her in the position of Bethany one day. The UK needs to wake up to what is going on under their noses. The government need to take drastic steps to change what is happening now and not by a future date. Children and adults need to be placed in the right environments with the right people caring for them. Parents need to be given their voices back. People with mental health conditions need to be given appropriate care in appropriate environments and the prisoner like locking up of autistic people and PDAers needs to stop.
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