Usually in my articles I like to give advice, or make suggestions where I can, on things that might make life just a little bit easier for some. This one is going to be a little bit different as I am going to question something that has been popping up a fair bit lately in messages from upset and annoyed parents.
The problem that seems to have been occurring on a regular basis is one where parents have sent their child to use a service that advertises as being an ‘Autism’ service but then ends up sending their child home and turning them away from future visits.
Obviously if this is a respite service then that isn’t so great for the poor parents who have just settled in for those precious hours of their ‘own time’. Equally, and I feel more importantly, this isn’t great for the poor child who on the one hand was excited about taking part in an activity or away day but then is crushed when they are sent home and basically told to go away and don’t come back! I think we can all understand the negative impact that could have on a childs confidence and how they feel about taking part in anything else again in the future. If they keep getting sent away they will start to feel isolated and very unwanted!
This situation also adds an air of ‘uncertainty’ to all activities that are then arranged by parents. If you think about the structure and certainty that something will happen, that many on the Spectrum need, it is easy to see how they could start to doubt things arranged and planned by parents……..’hmmmm last time you told me I was going to enjoy and like something I was sent home’ On the whole most of us take every seperate event and thing that happens on its own merit but someone on the spectrum is more likely to ‘grade’ things by what has happened or gone before. If a repeat theme of getting sent home builds up then in their mind that is ALWAYS going to happen and so they lose the ‘want’ or ‘desire’ to do anything that is then offered.
So, what is going wrong? The main issue seems to be when a child has gone into ‘Challenging Behaviour’ and I am talking about the real full on shouting and getting physical. Those that are running these services/activities are then struggling to cope with this and worry about keeping everyone safe and so the parents are called and that child is sent home.
Don’t get me wrong, I for one understand the pressures of having to keep the person in question safe but also those around them. Yes, challenging behaviour when at the extreme is rarely a pleasant experience. What I fail to understand is how a service or person presenting themselves as an ‘Autism Service’ can’t be prepared for challenging behaviour (CB) and what may come with it? If you are setting your self or your service up as being Autism Savvy then surely you MUST know that means you need to expect CB and how to deal with it. Sending a child home because you couldn’t cope with their CB or the amount of support they need is surely discrimination? ‘I will take you you and you….but not you’.
Excuse me for being ‘daft’ but to me that is like saying ‘I will look after the blind but not those who will walk into things or fall over as that is hard work’
As we all know Autism is a VERY complex thing. I don’t have a problem with people being honest and stating what they can and can’t handle or cope with but why don’t they do that? Too often the simple answer is they don’t because they would lose funding. It is more important for them ‘on the surface’ to look great and shiny but below the surface out of the public view the truth is very different. All funding should be accountable at many levels and not just ‘where’ it comes from and ‘how’ it is spent. Who is actually looking to see that all briefs are being met and do they understand them? Are they aware that people are being turned away from a service they fund?
Mechanic’s know their engines…..Chef’s know their kitchens…..pilot’s know their planes…..So doesn’t it stand to reason that people saying they work with and around Autism should understand everything that comes with it and how to cope?
It is also sad to say I have heard this from a couple of schools as well. These schools have DSP units and yet someone is being sent away for being ‘complex’ or too hard to work with. Again I can’t help but think to myself ‘so why did you take that person in the first place’ and ‘did you really think this would be easy??’
There seems to still be a situation where a tick in a box to say a service or school is doing something is more important than how to actually implement it!
The phrase ‘Person Centred Care/Planning’ seems to be thrown around everywhere now. If the reality of that phrase was being lived up to then surely many of these situations wouldn’t exist? To plan something around a person’s needs and demands means you put in place everything needed to best cope with and support them. Within care I didn’t take someone out and then witness something and think ‘wow wasn’t expecting that!’. I knew what was likely to happen and was ready for it the same as all other great care staff out there.
What upsets me more than anything is that in all these situations we are taking away ‘dreams’. When I was young and growing up I was allowed to pretty much have a go at what I wanted within reason…….If I wanted to play rugby, ‘Go for it’…….If I wanted to do ballet, ‘those tights won’t suit you but go for it’………no one held me back. Everyone sending a child home because THEY can’t cope with them or actually don’t even know how to are surely taking those ‘dreams’ and chances of doing things away from them. Who gives us the right to deny children the chances we all had?
As a service/charity/school if you can’t cope with something or don’t know how to then TELL PEOPLE UP FRONT. I don’t want services etc thinking they HAVE to present that they can do everything when they can’t. Yes it will not be popular and the authorities will frown upon it but at least it will start to highlight where certain services are MISSING and LACKING the real support that is needed. Also I think this will wake many up to the realities of the SPECTRUM and the fact that all is not as it seems and that too many services are too often taking the easy route.
Why moan about this? why write this article? Well I shall tell you because I don’t want one more child or young adult telling me in floods of tears that NO ONE LIKES THEM and EVERYONE HATES THEM because they always get sent away………..