If you live in the UK, you probably know many families are engaged in legal battles to get their children freed from hospitals where they have been wrongly placed, and detained. Even though there is no need for them to be there the fight to get them out is still incredibly long, and difficult. Most of these children and teenagers are put in places for issues relating to their autism – as if taking them away from their family and routine, and depriving them of their freedom ever could help! Most of them are being treated as if they have some kind of mental health problem, being given drugs or kept on psychiatric wards. Often they will be punished for having meltdowns by not being allowed to see their families. Now a meltdown isn’t something a person can help, and in circumstances like this how could somebody not have a meltdown?
In my personal opinion, whatever the reason is behind taking somebody with autism in to a place like this, it is never a good enough reason. All an environment and change in routine like this can do to somebody with autism is ruin any progress that person has made. All parents report that their children are extremely distressed and anxious the entire time they are in these wards. I understand the concept of sectioning somebody who might need a particular type of help and giving them the best care possible, even if initially they are opposed to it.
But first and foremost, autism is not a mental health condition; it is simply a different way of thinking and feeling, and the idea that somebody can be detained for this is quite worrying.
And secondly, people with autism may well have a lot of issues in their life that are difficult for them and their families to deal with, but by and large their families want to keep them at home, and help to work through these issues together. You are not dealing with people who are incredibly out of control and constantly hurting people around them – you are talking about people who have a nice loving family life, and a high quality of life themselves.
Thirdly, and probably most importantly, even if those families needed to reach out to the system for help, the so-called help and treatment that is being forced upon these people is completely useless and counter-productive. The fundamental principle of detaining somebody against their will to help them with a medical or psychological problem is that you have to give them the best possible treatment for their problem – you don’t section or detain somebody, and then sit around scratching your head about where you might put them, or what you can do with them.
You are left confused as to where the actual professionals who are supposed to be experts are in all of this? Most of these hospitals, far from being autism–specific don’t even seem to have any staff trained to support people with autism at all. Nobody at any stage of this process seems to stop and think `Hang on a minute, this experience is actually going to be severely damaging for somebody with autism`.
If a doctor suggested that somebody have a kidney transplant to fix a problem with their hearing then surely those around him could point out the error of his ways? But nobody in this process seems to be able to do this. Even if -and let`s just create an example here – you have a seventeen year old who has autism, but also depression and severe anxiety (so alongside their autism they do have mental health conditions) the autism has to be the key factor – it is the constant, and the main thing that should be thought about when trying to treat the other conditions.
It is a sad fact that being an autistic person in a neuro-typical world can often bring on anxiety and depression, but if you do detain this person, and in an inappropriate setting, you are only going to negatively stimulate the autism. The young person would be in such a constant state of sensory and emotional overload – the two things that many autistic people consider the triggers for their depression – that seeing any benefit at all to any of the issues they had, would be pretty much impossible. And this is being lenient and saying that the person might have a mental health issue before they go in to one of these hospitals. However, the sad fact is that a lot of these people seem to be developing depression because they are being detained, and supposedly receiving help.
I know as well as anybody that mental health, and issues such as autism are incredibly complicated and tricky subjects. But some things are simple, and one of the fundamental principles that everybody involved in the treatment of somebody with autism should know, is the list of triggers that can cause overload and distress in autistic people. Taking somebody to a hospital hundreds of miles from their family pretty much ticks every box on that list – so whatever the reasons are behind it, and whatever good intentions the people involved may claim they have, it quite simply won`t work. All it will do is create more problems.
Whatever people say in terms of money, intentions or simple availability in other places, it doesn’t matter – you don’t do the wrong thing simply because it is not convenient to do the right thing. If it was in the nineteen sixties we could look back on it and say `What a strange time it was, when people thought this would actually help someone with autism`. And I am sure that in however many years’ time people will look back at this period of our history, and say the same thing. But I don’t want that to be in fifty years’ time – I don’t even want that to be in five years’ time – I want people to wake up and realise that the best way of supporting people with autism is to wait to be asked for help by the individual with autism or their family, and then respect their wishes – especially the wishes of the person with autism –throughout. People in authority should not to take over, and start throwing their weight around, but simply to be there to offer support where needed.
Let`s take a step back from the moral issues, and the emotional involvement from the families and the people with autism, just for a moment.; at a core medical and psychological level, this strategy is deeply flawed. It is impractical and unpopular, but unfortunately it is also virtually unknown.
Luckily the media are starting to take an interest now, but I would urge anybody reading this to look in to it for themselves. This is just my opinion – but I have also heard it echoed by others with autism and their families. It is important to remember that this isn’t something that was happening in the nineteen sixties, it is something that is happening now.
And it affects me on a personal level because if things had gone differently I could be one of those people locked up, and unable to see my family – and so could you, or somebody you know. This is one of the reasons I am so passionate about this subject, and why I believe you should be too.
Links to families who have been affected by this issue, and campaigns that have emerged because of it:
- https://www.facebook.com/JusticeforLB You can read more about this story directly on Autism Daily Newscast here.
And the LB BILL
And the petition
And the petition
- http://justicefornico.org/ (not specifically autism, but still relevant)
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