Respite has been big news. Many parents and carers say it is an absolute necessity for them, giving them a vital break, an opportunity to recharge and the chance to fleetingly live life the way everyone else does.

Many of those who are cared-for, and who can speak for themselves, say they enjoy the change of scene, the company and the additional stimulus that it brings to their lives.

This does not mean, however, that everything in the respite garden is rosy or that it is always a positive, appropriate or desirable experience for everyone. For many it isn’t, and in this article I would like to highlight some issues on behalf of those who cannot speak for themselves, particularly in the context of the mismatch that occurs between conventional respite and the specific difficulties of autism.

                    Before I do I'll make my own position on respite clear.

Firstly, I believe that the use of respite care is something that each family should be completely free to make its own decisions about and that no external pressure should be placed upon them, subtle or otherwise, from either professionals or anyone else

I believe that there should be absolute clarity regarding whose benefit the respite care is for, whether carers, parents, siblings, the cared-for person, professionals, service providers or any combination of these.

I believe strongly that there should be particular clarity regarding the perspective of the cared-for person being placed into respite, most especially when they are unable to communicate or when their coping capacities are significantly impaired.

I believe that respite should be provided in a variety of forms, ranging from current conventional, residential respite to in-home care for those who cannot adequately access or cope with residential placement.

Finally, I believe that language really, really matters. The words that we use to name things shape both the nature of the thing we name and the way we perceive and enact it. ‘Respite’ presents a view of disability and caring that has connotations of suffering and dour endurance. It’s a ghastly, gloomy, martyrish sort of word and I think it’s high time we found a better one.

                Let’s look at each of these points in more detail.

I am absolutely certain that any professional would say that, of course, respite is a free choice. I would have to disagree, both from my own perspective and from that of other parents. In theory it’s a free choice. In practice all sorts of pressures are brought to bear from both disability-system professionals and the wider community.

I am sure that it cannot be an experience unique to me that when I meet people who find out I have a severely autistic child one of the first questions they are guaranteed to ask is,

                                   ‘Do you have respite?’

When I tell them that I don’t place my son in respite care the predictable response is invariably,

                                      ‘But you should!’

These opening gambits have been repeated throughout the whole of my son’s life and have always left me perplexed. Of all the possible things that people could ask why do they ask this? And why do they feel it appropriate to instruct me in what they think I should be doing? I can’t imagine, for example, meeting parents of ‘normal’ teenage boys and immediately asking them whether they put their sons into institutional care at the weekends. Neither can I imagine myself telling them that they should.

Now, there may be lots of parents out there who would love to put their sons away for the weekend but nevertheless I think these habituated responses reveal much about accepted attitudes to disability, chief of which is that respite is simply ‘what you do.’

I have sometimes asked people why they ask this and why they are telling me that this is what I should do. The answer is always the same...that if I don’t avail of respite I will ‘burn-out’. Sometimes I giggle at the thought of spontaneous carer combustion, which only adds to their belief that too much caring robs you of your wits. And sometimes, quite frankly, I am just really pissed off at this universal assumption that I’m unable to decide what’s good for me or my family, as if my son’s intellectual disability is leeching my own I.Q.

The assumption that respite is ‘what you do’ also pertains within the structures and systems of disability provision as a recent call from a parent illustrated. She had received a letter from her service provider informing her that a place was booked for respite care for her child the following weekend. Now clearly there are families all around the country wondering what the problem was...the problem was that she hadn’t requested the place, didn’t need or want her child to go and knew her child would be very distressed if sent BUT she was afraid to say no because she knew that this is ‘what you do’. She didn’t feel she could say no without being subject to disapproval.

Her feeling is not unfounded. When my own son was younger we had a home visit from two HSE professionals who likewise asked whether I was using respite. I explained the severity of my son’s autism and the fact that, at that time, he could barely cope with life beyond his own bedroom, never mind one in a respite home. I was tutted at, disparaging looks were exchanged and I was told in no uncertain terms,

                                ‘Well, other people do.’

Every single family with a disabled person in it is unique.  Disabilities differ as do personalities, coping skills, attitudes, energy levels, numbers and ages of siblings, extended family and friends available to help, family dynamics etc, etc. The variables are endless and every family has its own mix that comes into play in the decision of what is or is not right for everyone in it.

Respite care, whilst needed and wanted by many, is not right for everyone. Nor is it right for every disability and no-one should ever be pressured into going against their own knowledge of what is best for them and their family.

This pressure does exist and is invariably couched in terms of it being ‘good’ for the cared-for person, supported by the premise that everyone who goes ‘loves it’. Many do, some may, some really don’t and many cannot express a view either way. When blanket statements are made regarding the views of the non-verbal gross injustice can be done to their true feelings and experiences and this should never be forgotten, which is why prime consideration should always be given to the feelings and capacities of the person being placed in respite.

Life is never perfect but this does not mean that we should avoid possibly uncomfortable truths about whose benefit respite care is for. Neither should we ignore or gloss over the possibility that it is not a positive or emotionally comfortable experience for some of those that are sent to it. Conventional respite is not, fundamentally, Butlins, it is the bringing together of groups of disabled people into temporary institutional care as the most practical and easily organized way of providing their carers with some time off. Within this remit we need to unpick the threads of who gains, who loses and why.

I have a friend who is the parent of an intellectually disabled child and who actively resisted the ‘processing’ of her daughter into respite care until she was of an age where she could choose for herself whether she wanted to go. I say ‘actively resisted’ because she felt that she had to pro-actively justify her decision in order to avoid the ‘clingy parent’ label.

Her reasoning was that she would not be sending her daughter to institutional care against her wishes if she were ‘normal’ but that by allowing her to choose she was creating as much opportunity for ‘normality’ as possible.

As her daughter reached her teens the potential for socialising with her ably-challenged, chronological peers diminished as she was clearly not going to be included in the sleepovers and independent outings that they were organising. An occasional weekend in the respite house with others of her age gave her a sense of peer-inclusion, freedom and independence all of which is of clear benefit to her whilst allowing her parents some time off. In this situation everyone gains.

The situation is different, however, when either seriously challenging behaviour or high-dependency physical needs are factored in. In these situations many parents and carers feel that respite is the only thing that keeps them going. Without it they wouldn’t be able to cope and the person they look after may end up in residential care.

The challenging or high-dependency cared-for person may not necessarily enjoy the experience but if it allows them to continue to live at home then, overall, they could be said to be gaining but certainly not without cost to their own feelings and experience.

When we get to autism and its related disorders the picture gets even more complicated, especially when the sufferer is at the more severe end of the spectrum and this is where parents can experience acute difficulties in getting the reality of the situation across to professionals.

An account by a parent given in the recent media coverage of respite stated that it had taken ten years to get their child ‘settled in’ to respite. No parent of a child whose autism is at the more severe end of the scale will be surprised at this and I would guess that there are parents of even moderately autistic children who would identify with the problem.

Autism brings levels of anxiety that are simply not present in other disabilities and their chronically crippling effects and repercussions can be difficult to comprehend, or even believe, unless witnessed continually at first hand.

Parents of the severely autistic know only too well the dilemma that this brings. The reality is that severely autistic children can find even a few hours in their own home with a substitute carer so intensely challenging that they will deteriorate for days. If we factor in the possibility that they may be non-verbal or may not understand what is said to them then it is not difficult to see that conventional respite care is their worst and most terrifying nightmare come true.

Parents are acutely aware that placing their autistic child in conventional respite care may cause genuine suffering to that child. They are also acutely aware that, if they do, the short amount of time off that they get will be marred by worry and unease and may be paid for by a resultant regression where life gets worse and not better. They also know that autistics, especially severe autistics, do not just 'get used' to things in the way that others do. Desensitisation can take literally years, can generate extraordinary problems along the way and sometimes may never work at all.

                               This is the reality of autism.        

And yet parents are exhorted to use respite. They are told that children ‘get used to it’, that they will eventually ‘settle in’.....even if it takes ten years.

The question I would like to ask is how do those ten years feel to the disabled person who must clearly be experiencing significant distress?

Let’s turn to the tried and trusted method of turning things around to bring some clarity to this issue. If a parent of a 'normal' child  repeatedly placed that child into a protracted situation of acute psychological and emotional distress they would be deemed to be abusive. Doing it once may well incur the attention of social workers et al. Doing it regularly could well mean the removal of their child.

So can someone please explain to me why it’s okay to do this to autistics, why professionals are not questioning their own practice in relation to this issue and why saner, and more realistic and flexible ways of helping those who cannot cope with this mode of care are not an urgent ethical priority?

 And finally...there are two reasons why the language that we use to delineate disability really matters. The first is because it affects everyone’s perception of what it is like to be disabled or to care for someone who is. The second is because it highlights the gross inequities that exist between the world of disability and the world of ‘normality’ and nowhere is this more apparent than in the contrast between the language used to define the experience of caring and that used to describe the working conditions of ‘caring’ professions.

It is into this context that the term ‘respite’ falls. Let’s turn things around again to illustrate my point. Many carers are doing exactly the same work as their professional counterparts and usually for many more hours but whilst professional staff have statutory holiday entitlements parents and carers get ‘respite’...if they’re lucky.

                             Now tell me, which would you rather go on?

          Holidays sound like fun, respite sounds like a day off to wash your hair shirt.

                              Time for a change I think !

Gaia Charis,July,2010