I am sure anybody reading this will be aware of the various stories about people with autism being taken away from their families, and forced in to hospitals. But just in case you are not, I will briefly refresh the situation. Across the country various young people with autism have been placed in the care of hospitals and ATU`s. This is often against the wishes of themselves, and their families. The institutions that they have been placed in are not specifically designed to support people with autism, and often very vulnerable people are being placed among those with significant mental health issues, and drug and alcohol addictions, and this is clearly not an appropriate environment for someone who isn`t facing these issues. There seems to be no upper-limit on how long people with autism can be kept in these institutions. The families are often turned away when they attempt to visit, and visiting in itself is difficult as most of these places are located many miles from the families’ homes.
I suppose what I wanted to talk about in this blog isn’t so much the moral issues, as they have been discussed many times, and it is fairly obvious that it is not right to take people with autism away from their families, and keep them for an extended period of time in an inadequate facility. What I am really talking about is some of the actual practical effects this could have on the person. This is based on being somebody with autism myself, and imagining the impact that something like this would have on me.
First of all let`s look at why these people are being detained in the first place.: there doesn’t seem to be any one particular reason for admitting them in to hospital; some people are asked to voluntarily stay there for one night, and find themselves still locked up months later. Some are meant to be there for a few weeks, but are then not allowed to leave – despite their families knowing it is the wrong place for them. Others are in places that are close to home, and then suddenly taken away to other places, hundreds of miles away, that are not equipped at all. In reality it all seems fairly murky. There should be no reason for forcibly taking somebody with autism to any kind of institution, so of course the excuses and reasons will seem flimsy. Whatever people may try to tell you, autism is not a mental health condition. Now at this point I feel that I do need to point out that sectioning somebody who has a mental health issue under the mental health act is different – it might not particularly be easy or nice, but sometimes it has to be done if someone is a danger to themselves or others. But the key point of sectioning someone is that it should be done to ensure the person gets the best support, and care that they can – mental health professionals are supposed to come and check where somebody who has been sectioned is staying, and if their treatment is right for them. Now people with autism shouldn’t be sectioned under the mental health act as they don’t have a mental health issue. But even if the person with autism does have a mental health issue that is separate to their autism, the way they are being treated is still wrong. Parents might have agreed for their children to go to an ATU for example, just for a few weeks so that they can be assessed, and ultimately helped. Consent for assessment and treatment should in no way imply that what has been happening to families up and down the country is ok.
The idea here appears to be a basic level of misunderstanding, and ignorance around autism; somebody is autistic so they are having meltdowns, so they are detained and sent to hospital or ATU – often hundreds miles from home. They have their time outdoors, and their contact with their families restricted – in a way akin to somebody in prison. They don’t know when, or if they will ever get out. So let`s do a list: here we have uncertainty, change (routine, location, people, environment) we have sensory issues: sights, sounds smells, we don’t have any of the things that may comfort, or calm a person i.e., particular possessions, or contact with family members and friends. I think this would provoke a pretty negative reaction in most neuro-typical people, but in autistic people – well I know I would be bound to have some pretty serious meltdowns if I was in this situation.
There seems to be a principle that the more negative aspects of autism can be treated or cured if the person with autism is kept in a medical facility for long enough – this is nonsense. As myself, and my family can attest to, the only way to help minimise the impact of outbursts and meltdowns is by a lot of hard work being done at home If you add in all of these other elements you are never going to solve the problem. There is a huge difference between a specific respite care centre for people with autism, that is fully staffed with competent highly-trained professionals, and allows visiting and freedom of movement for the autistic person, and somewhere hundreds of miles from home that is set up to deal with individuals with complex mental health issues. It appears that people are trying to treat autism with methods used for completely different issues. A good way of thinking of this is to imagine yourself turning up to A&E with a broken leg, and finding your arm being put in plaster – when you ask why you are told that the doctors knows best, and you just have to stick with it. As time goes on your arm is still restricted, and you can feel your leg becoming ever more painful. You are told that you can have the plaster off your arm as soon as your leg heals. Because that is a physical example it is much easier for people to understand. The concept, when it is translated to something inside the mind becomes much more complex for people – simply because they cannot see it. But for anyone who has any concept of autism, what is happening to these individuals is no less ridiculous or frustrating.
We have established that there are absolutely no benefits to people with autism being locked in ATU`s and Hospitals – often many miles from home – and that this is a very strange, and unpleasant situation. But if there won’t be any lasting benefits, will there be any long-term effects at all? Well, there may well be. Again these are just thoughts from my own head, and I don’t want to imply that these are things that will happen to everybody that is in this situation. I am again just using the way my own mind works as somebody with autism, and tying to imagine the effects that something like this would have on me.
I know first-hand, again from my own personal experience, and from talking to a lot of other autistic people, that one big change to routine, or one particularly busy social event can have implications that can be on-going for months. It can cause feelings of sensory overload, which can lead to depression, or severe outbursts, or even physical illness. And that can be, as I say, from only one event, or particular change. If we are talking about somebody spending months, or even longer, experiencing these thoughts, feelings and emotional overloads daily, then the idea of how long the after effects could remain is incredibly daunting. I don’t want to be pessimistic, but the impact of something like this wouldn’t be over quickly for anybody – least of all somebody with autism.
There is also the worry that even though the autistic individual might not have any mental health issues when they are admitted to these places, an experience like this could easily bring on conditions such as depression and anxiety. These are unfortunately common in autistic people, and are likely to be triggered by their experience. They might not be present at all before somebody is admitted to one of these places, but they could well become apparent once they have been they are released.
Another unfortunate consequence is the damage that being detained can do to the work that has already been done to help the autistic person. I know myself – again from experience – that it can take a life-time to build-up certain skills. The impact that being locked up for so long can have on social and communication, and independence cannot be underestimated. I can`t say for sure that this will happen in every case, but it does certainly have the potential to knock the skills somebody has developed right back to basics. So not only it is a completely ineffective treatment, it could also destroy everything the individual and the family have worked for, and achieved.
All of the above hasn’t even taken in to account what the various drugs forced on these individuals could do to them. The commonly accepted facts about drugs prescribed to people with mental health issues is that they generally would cause some kind of side effect – but that this may be worth it for the positive effects. The problem here though is that because people with autism don`t actually need these drugs, they don’t get any positives from taking them, and are simply left with the after-effects – whatever they may be.
These are just a few thoughts that I have had as a person with autism, reading about these families. I am sure there are a lot of other issues that people who are more directly involved in them can bring up. I understand that at times some of the people who work in these places, and perhaps even the people who arrange for the autistic person to be taken in, might think that they have that persons best interests at heart – as hard as this may be to believe – but good intentions don`t meant anything unless they are backed-up by good and positive actions. And in this case, actions are definitely speaking louder than words. Whatever is happening, whatever the justification for it, it is wrong – plain and simple. The sooner not only the professionals, but the general public wake up and see this, the better.
My new book: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum.html/
Links to families who have been affected by this issue, and campaigns that have emerged because of it:
And the LB BILL
And the petition
And the petition
http://justicefornico.org/ (not specifically autism, but still relevant)
If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS?
And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!) http://www.jkp.com/catalogue/author/1762