On Wednesday 28th September Austin Hughes our Senior Practitioner was supporting the launch of BT Sport and the Premiere League Disability Day in London. We are pleased to announce they are putting more funding into ‘inclusion’, working with West Ham Foundation who support and partner our charity AnnaKennedyonline.
The children loved Micheal Owen who got involved with their inclusive football sessions. It sounds like a great day was had by all.
By Austin Hughes
Yes that time of year is here again! Lights are ready to twinkle, garlands are there to be hung and every kind of tinsel you can imagine is calling out from hooks in shops begging to be taken home and draped over every available surface. Festivity and joyousness are flowing out from every shop window and doorway that we pass in a mulled spray on snow fug. I dare say that if you were to stand still long enough in one place you yourself would soon enough find yourself decorated like a human Christmas tree!Families on the whole LOVE Christmas. Many parents not only love it themselves but also WANT to make sure everyone else loves and enjoys it to the same degree.It can surely only be a explosion of Christmas enjoyment ……………. Can’t it?
Sad to say for some that is not the case.
Christmas is one of those times when we too easily forget those basics that can help us steer a steady ship. The pursuit of making things GREAT and ENJOYABLE can lead us into a real nightmare. This is one of those times that we are guilty of letting ‘OUR’ perception of something override the understanding of others. We are stood looking at things solely from OUR point of view and not that of others. It is a very natural thing to want the best for everyone but sometimes we forget that OUR idea of what the best is can differ a great deal from others, especially anyone on the spectrum.
In short, what can look like an enjoyable explosion of festive cheer to some, can actually look to someone else like a very confusing sensory nightmare that makes no sense at all and does nothing but make me VERY ANXIOUS!
So, seeing as we don’t really want to upset or make anyone anxious what is the answer? Ban Christmas? Throw the tree and decorations away? Sit and enjoy a ham sandwich with Ribena when the rest of the nation is wearing colourful paper hats that don’t quite fit while tucking into 24 hour boiled sprouts?
The answer is ‘compromise’. If decorating the whole house and going Christmas nutty will cause anxiety lets not do that. If locking Christmas away will upset some lets not do that either! You would be surprised just how many people don’t stop to think that actually they could just decorate ‘some’ parts of the house and not ALL the communal spaces. Christmas dinner doesn’t have to be ONE or the OTHER…… it really can be both! Everyone that will enjoy a full traditional dinner, let them and anyone who would like to stick to something they are use to each day which is maybe a bit plainer (or even spicier in some cases!) let them have that. It might be a small pain to have to prepare a mix of things but think about the enjoyment that will be had by all. It is funny because we don’t flinch when it comes to the fact a person might be vegetarian. REMEMBER…… PICK YOUR BATTLES! Why upset someone or go through the related behaviours if they can be avoided by just letting that child/person have the meal option they would like. It might no seem festive or fun to YOU but that is not the issue. You can be happy with your traditional dinner and they will be happy with their choice. It is as ever important to not allow OUR perception of what Christmas should sound, feel or taste like to take precedent over someone else’s needs.
It is an odd fact to accept sometimes that OUR wanting something to be just right can actually bring upset or anxiety to another. Christmas can be all the fun we want it be as long as we accept that not everyone wants the full bells and whistles experience. Small changes and compromises can genuinely make the whole experience enjoyable for ALL in their own way. Here is another simple example. For many families it is traditional as part of Christmas Dinner for everyone to pull the good old traditional cracker with that satisfying bang and terrible joke. Think about that whole process with someone sat at the table who may not like sudden loud noises…… have a sensitivity to smells (yes there is a smell many of us don’t realise each time a cracker goes BANG)….. not like clutter…… not like people trying to put a hat on their head etc etc the list could go on. To have that person sit and endure that experience is not going to be pleasant for them. You might think that not including them in such things doesn’t seem right but the truth is if they will not enjoy it and would prefer not to experience such things then why make them. Why not pull the crackers just before or after dinner as a group while that person/child is doing what they want in another room? Again, that person does not feel anxious from having to go through it and you ALL still enjoy your crackers and badly fitting hats!
We could write this article detailing every single thing that happens in and around Christmas, offering many different strategies and ways of doing all of those things. The truth is that posting would be HUGE and Christmas would probably have come and gone before we reached the end.
What makes more sense than a never ending lists of ‘Do’s and Don’ts’ is to simply remind everyone to THINK of all those basics that we know are important to that person on the Spectrum. Remember to think about their sensory needs. Think about their possible aversion to ‘change’ (in your mind decorating the house may not seem like much of a change when you consider the same old house is underneath but to some on the Spectrum it just doesn’t work that way) Keep low arousal in mind at all times……… yes when you get excited about something you think is brilliant just stop to evaluate it from the point of view of the person/child on the spectrum. Find that compromise where EVERYONE can enjoy Christmas in their own way. Also, importantly when you have decorated, wrapped and slaved away in the kitchen try to just enjoy it for yourself as well. I say that because too many people in the past have actually ‘worried’ more than they needed to about MY enjoyment when they should have been enjoying the moment for themselves. Yes, sometimes when I slowly wander off to sit alone for a while or retreat to my room it is not because I am upset but because at that moment that is what I want to do so don’t ALWAYS worry in that sense.
Most importantly always engage with that person, where possible, about all these things. Don’t panic and worry that every move could be the wrong one. Try to sit and simply find out WHAT they will like, enjoy and will be able to cope with. When parents whisper in other rooms about what on earth to do or start to panic then often someone on the spectrum will pick up on that and be anxious before you have even got that first dusty decoration filled cardboard box from the loft.
– Try not to decorate the entire house. Leave one communal space that maybe has no decorations so that child/person on the spectrum always has a quiet/safe space to go to other than their own room.
– Unless they have requested it DO NOT decorate their room! Yes, I have met many parents with the best meaning intentions who have decorated their child’s room and not seen why that would be an issue.– If that person/child has problems with ‘change’ then try to take some of the surprise element out of things. A good idea is showing pictures of the year before to remind them what the decorations are like. Try to do as much of the decorating as possible with them assisting or just being around so they are aware if it. Where possible decorate gradually so it is not a HUGE sensory hit at one go.– Stop to think about the little things such as that oh so lovely Christmas Candle or the bowl of festive potpourri. You may think it is nice but someone with sensitivities around scents probably will not!– Always give reassurance and make sure that person/child can access all the safe places they usually do as well as being able to carry out the routines they always do. Remember most routines and repetitive behaviours are often coping strategies so lets NOT make it difficult for that person to do those things that make them feel comfortable.– Try as much as possible to understand that person/child and don’t be afraid to ‘Let them be’. Remember that sometimes a person may move away from everyone else because that is what they WANT to do and doesn’t always mean they are sat sad somewhere……. it could be they are happily doing their own thing!Be open…… Remember the basics…… Use different perspectives than your ‘own’ to evaluate…… Compromise where you can……At Anna Kennedy Online we want to wish you all a VERY MERRY CHRISTMAS……… however YOU choose to enjoy it.(As with all our articles relating to autism please remember that the Autistic Spectrum is a very wide and varied thing. What works for one person on the spectrum there is a good chance will not work for another which is why it is important we always stop to understand the PERSON and not the label)
( Austin often likes a tune to go with pieces he has written so this time he has gone for the obviously linking track by Keane https://www.youtube.com/watch?v=Zx4Hjq6KwO0 )
So, it is that time of year again when everyone has pretty much returned to school. The many ‘obvious’ changes around this point we are within the Autism community very aware of. Changes in teachers, peer groups and repainted rooms are just a tiny scratch on that surface of the issues we all know can cause a difficulty for many on the spectrum at this time.
The transition from year to year is a big one and strewn with obstacles to catch us out. A great transition plan started back before the end of the previous academic year can go a long way to cushion the impact of these obstacles. Pictures of new rooms and staff or even the chance to visit them can take much of the sting out of them. Sometimes though this still has its failings. I have encountered many a child who has been given a GREAT plan. They are aware of their new teacher and even know some details about them. The room they will be in has been visited and even a spot to sit in picked out. This all sounds great until September rolls around and we find that new teacher is actually more of a Tony Hart than a dour scholar and has transformed this new teaching space into what can only be described as a section of the Rain Forest Cafe! Caffeine energised murals, loo roll palm trees jutting from walls and creatures hanging from ceilings have suddenly transformed that comfortable ‘known’ space into a living hell that can take a LOT of time for a child on the spectrum to acclimatise to. Also this can throw up trust issues. Within that is a stream of information clicking away thinking ‘hmmm you told ME I would ENTER this room shown in THIS picture…..and yet I walked into THIS!!’
If we were to list all those transitional issues this piece would take days to read! On the whole they are all things that with the right time and warning strategies can be put in place for.
However, what about all those things we CAN’T clearly map or be aware of until they actually happen? Those things that most people NEVER stop to consider, the other children themselves.
I am not referring to children who have left a peer group or those who have maybe joined after a family move. Here I am talking about the actual change ‘within’ the children.
Through life we all change. The way we act and think alters as we make our way through it. Some of the biggest changes come when we are children. Stop to consider toddlers and very young children just happy to play and sit in the sand with whoever happens to be there. As they move into the very lower ranks of school they do still stay together with a wide acceptance of each other. A ‘class’ or ‘form’ group nurtures that mentality for a while longer. When the time comes to graduate through the years we soon enough see that bigger group splinter and exist by form name only. That form is now made up of smaller groups. Friends who can tolerate each other, but don’t think much of others, form little cliques. Those who like a certain strain of music or favour a particular brand of clothing move towards each other like magnets. The children who want to sit and conscientiously work hard edge away from those happy to sit with pencils up their nostrils ready with a rubber band to fire with crack precision at any moment.
The very way children act, behave and how they want to just ‘be’ around others is for many years in a state of flux. I say this because those changes aren’t always immediate and can often be gradual as they still link to older friends they have always known before fully switching to that new clique. Even more confusingly is the fact that some of this can also be done conditionally! Within school a child might need to appear a certain way and only be with that set clique and yet away from there they are happy to spend time with those rejected in school for having the wrong trainers.
As mentioned some such changes can be very gradual. When you think about a summer holiday covering up to 6 weeks, and longer for some, you can understand why the difference in a child’s behaviour between the end of a school year and the start of the next can seem so sudden and vastly different to someone who doesn’t see them over that period.
These are things that most children, and then adults, learn to accept in life. It can bring some soul searching and wondering what they possibly did wrong but on the whole they continue with the flow understanding in the fact that the supposed status quo often changes.
Now though let’s stop to consider the youngster on the spectrum who maybe doesn’t so easily grasp or accept change. Much of the change that does have to be accepted and overcome is obvious and tangible. The issues can be seen and identified by that child. The problem is though; when it comes to the changes we have mentioned within children themselves they are not so obvious or tangible. That child on the spectrum finishes a year knowing the people they have learnt to accept, or in many cases just tolerate, and knows that in some way that is reciprocated. A set status quo exists around those parameters. So, how does that child cope when they return to school to find the person they thought they could once again sidle up to maybe no longer wants to share any amount of time or space with them? Nothing obvious has happened. They have done nothing they are aware of to cause this reaction so why has it happened?
If you stop to consider that a child on the spectrum may not always be quick to speak up or voice their worries then you can understand why such changes can present as a very negative time. The things and people that you thought were set in stone are now very different and for no known reason. On top of this you can’t clearly communicate this issue to anyone else and so it stews away inside you bringing its own ever increasing circle of anxiety.
Also at this point stop to consider how you have felt in life when someone has ignored or shunned you. Did you like that feeling? Did it not bring with it further emotional reactions within you such as feeling lost and alone? You can see how someone not understanding such a situation or in any way wanting to communicate about it could along with the anxiety start to feel very depressed.
So, is there anything we can do to stop this? Is it possible to line up your child’s peer group and tell them very Peter Pan style NOT TO GROW UP!!?? I think we know the answer to that is a definite no.
The truth is there is very little we can do about such changes in life, however, we should not just brush them away and hope everything will be ok. These are some of those almost ‘hidden’ issues that we need to be aware of. If a child is struggling, when everything possible seems to have been done, within such a transition year to year then DO stop to consider these points. Reflect on whether the issue could be this not so obvious and easy to grasp situation.
Consider carefully how to approach the subject. For me all personal issues are just that…… VERY BLOOMIN PERSONAL!!…. Someone trying to engage with me over them will instantly cut to my inner core and at that point I don’t know how to regulate the welling of emotion that I will feel. From that point on I am likely to just further shut down and withdraw or even act in a way that may not seem too pleasant (challenging behaviour) So, it is important that you approach such matters carefully and in an almost ‘throw away’ manner so it doesn’t seem so personal and direct. Remember to not just reassure that child on the spectrum that this part of life is natural and ok for them but that it also happened to YOU and everyone else around them. This can help stop that child feeling or thinking this is an isolated thing that has only happened to them.
We are not all mind readers so it can be very difficult to detect such issues. By keeping them in mind though and always stopping to consider the things in life that aren’t so stand out obvious you can be ready to bring reassurance, support and extra love should they present.
From a personal point of view I can say that I have very much struggled when people have ‘changed’. It is something that has always unsettled me and driven me to want to receive a clarification of WHY that person has changed in the way they have. Even on a day to day basis a person acting differently simply because they are in a bad/different mood can often cause me to be inwardly anxious about what is going on. I don’t stop to think ‘this will pass and all will be ok’ I just worry about and react to the change in mood there and then.
Life as a path can often appear a very obvious and set route from baby to child and on to adult. The truth is that path has many hidden twists and turns that at first glance we don’t always see until they are upon us.
(As ever it is important to point out that the Autistic Spectrum is very wide and diverse. With that in mind it is important to remember that our words are in no way meant to encompass everyone at any one time. People across the spectrum present with many different issues and some can cope with things that others can’t so please don’t ever feel that in what we write we are saying ALL will encounter or present with these problems)
Anna Kennedy Online