Once again holidays are upon us. A time for rest, recuperation and fun with a touch of sun burn thrown in for good measure. So, why is it that for so many facing the challenges that Autism has to bring this can be a very difficult time?
We’ve all heard ‘Education Education Education’ and ‘Location Location Location’ but now it’s time for ‘Structure Structure Structure!’. Structure and routine are often serious issues for those on the Spectrum. Even to those without the almost obsessive need to know ‘what, where, when’ there is often an underlying need for structure. We may not always see it as some do but it is there.
I’m sure, like me, many of you all remember the mundane and brain jellifying ‘routine’ of school. The same subjects….same times…..same patterns to each and every day and week. Some of us would go as far as to call it ‘Hell’, I know I did! But, to those on the Spectrum those things that can be a torment to us are actually fairly comforting. Structure and routine bring ‘stability’ and a ‘KNOWN’ factor to what is happening. It is worth remembering again how on the whole for most of us we are relaxed about what is happening around us. We have a good mapped out idea of how each day and week is going to play out. For example we all know that at some point of the day we will have our dinner and often we know the part of the day it will be had in. We may not know first thing in the morning the exact timing that we will have our dinner…….but we are safe in the knowledge that whenever it is it will happen. To someone that has an issue with structure and routine a simple little thought like that is their ‘hell’. The lack of structure and the ‘known’ brings about a loss of security. Not knowing that something IS going to happen means there is a good chance it may not and so panic and worry can set in. For many the simple processing of information itself can pose the problem that a structure is heavily relied upon to get through the day. Some can get by with the simple comfort of knowing a day will be the same as others gone before, others are happy just by seeing a ‘timeline’ or breakdown of the day’s events but some need the constant reassurance of a schedule to hand so that it can be checked hour by hour.
That ‘Hell’ of school we may have felt brings comfort to others. Imagine then what canhappen in the mind of anyone on the Spectrum when we remove that ‘comfort’. The breaking from school means a loss of uniformity to the day. Everything that has previously been done for a reason is suddenly meaningless. “ I get up at this time for school…..I breakfast at this time for school……I put my uniform/clothes on for school ” becomes “ I’m getting up at this time for????……Having breakfast now for????…..etc” there is no security or comfort in open thoughts like those.
The sudden loss of that comforting structure is often what leads to the problems that many parents can face at Holiday times making them not as pleasant as they maybe could be.
Have no fear as there are a number of simple solutions that can be put in place to help out. They may mean maybe not the lovely lay in that some get to enjoy but the calm it may bring in the long run is more than worth it.
When planning all your days try and structure them around the time frame that the School/Day Centre etc was using. If a person is use to getting up at a certain time for school then try and stick to that going through the same routine with getting dressed and breakfast. Have your schedule of events/actions that are to take place during the day fit the same structure of school so the first thing you do, even if it is something at home, starts at 8:45 (or when ever school would). Keep these things clearly defined on a schedule so they can be easily seen. Try to have breaks in your day and lunch at the time they usually would so that again this is bringing little change to what they normally do. If you follow these simple ideas out with the rest of the day then it is surprising just how much of a difference it can make! Another benefit to employing a structure that matches what they have been doing outside of holiday time is that it makes the return to norm easy as well. It can be just as much of a shock returning to a school schedule from holiday as it is the other way round.
If you are not able to offer the same rough structure they have been working to then do ensure you offer clear and simple schedules that can be accessed and viewed at anytime. These can be a real comfort to a person and please PLEASE ensure that you stick to them. Many of the people I have worked with will have a schedule in their rooms that they can go and look at and then a duplicate that can be taken out with them so that it is always there. If any problems are faced it is surprising how much of a difference just reassuring someone with their schedule can make.
There are a couple of pitfalls that I must advise you all about because I myself have fallenfoul of them…….Weather and closing times. We are all upset when we find that we are not able to do something as planned but ultimately we know and understand that it can be done another day. Again, for those on the spectrum, this is not always easy to understand or take onboard. Not going somewhere or doing something often means literally that…..it’s not happening. To counter the fallout that can come about with such things happening it is good to always have a backup plan that you know they always love doing and having any distracters that work to hand. If you are worried that weather may be an issue then it can be a good idea to be a little ‘cagey’ with your schedule. If you have directly stated that something IS going to happen then they expect it. To help yourself you can get round this by simply naming something ‘Activity’, ‘Car’ or ‘trip out’. In doing that if weather etc stops your original plan then you are still safe and can change what you were going to do without them knowing or causing distress. Schedules are great but always stop and think about what you put on them as they can come back to bite you! As an example its worth remembering that relatives and others often let us down so sometimes it’s not always good to state that an ‘activity’ is happening with their favourite Aunt because if that person then doesn’t show it again can cause upset.
Another good idea is to touch base with any support workers or 1 – 1 people. It is easy to presume that we know everything, but, it is surprising the little changes that can have happened of which we are not always aware. It is always good to check on any new known problem areas or little tricks that can work to help in a tricky situation. We think we communicate everything but I myself have chatted with parents that return from holiday to say “we’ve found the old distracter of xxxxxxx no longer works” only to then say myself “ahhh yes did no one tell you that before you went away!” We are all only human and things can be missed so a quick catch up to check we are up to date on all sides can be a great help.
So, as you all head into the holiday season ……..make plans, be prepared and keep to schedule……….easy!!! (I know you’ll all need a holiday when you return!!)
Here is a slang word that people in the autism community use to describe the noises and movements they sometimes make to feel calmer. It also covers habits such as nail-biting.
What is this word?
It’s stimming, short for the medical term self-stimulatory behaviours – a real mouthful.
Stimming might be rocking, head banging, repeatedly feeling textures or squealing. You’ll probably have seen this in people with Autism Spectrum Disorder (ASD) but not really wanted to ask about it.
It is a term used widely in the ASD community.
Why do people with autism stim?
There are many reasons. The world-renowned animal behaviourist Temple Grandin is on the spectrum and says most people stim simply because it feels good.
In Autism Digest in 2011, she said dribbling sand through her fingers was a feeling that used to calm her. Referring to her own childhood experiences, she said that stimming “may counteract an overwhelming sensory environment, or alleviate the high levels of internal anxiety these kids typically feel every day”. A real life example is that it could stop sounds hurting your ears.
As an adult, Grandin seems to control the sensory overload a little better but says some people need to stim to “refocus and realign their systems”.
UK campaigner Robyn Steward says she relaxes her wrists and lets her hands flap up and down when she’s happy or anxious. A public speaker with autism, Stewart thinks that for her, it’s the rhythmic nature of stimming that does the trick. “When babies don’t sleep well, you put them in the car, in their car seat, and you drive about. They are lulled to sleep by the sound and the movement because they feel safe.” The repetitive sound, she says, is a good example of a stim outside of the context of autism.
So, in short, stimming is often done to block unwanted sounds or visuals through distraction, or to bring focus. Not all noises and movement are stims – these have a purpose. Tics, for instance, are purposeless.
Is it just people on the autism spectrum who stim?
No. Neurotypicals, or people without autism (you, maybe?), also self-stimulate; nail biting, hair twirling and foot tapping all count as stims.
NTs, as they’re known for short, can usually control their stims and tend to do ones that are considered more acceptable in public than those done by people with autism.
There are blogs and web forums where people on the spectrum discuss stimming, compare stims and discuss public reactions.
Should stimming be stopped?
Welcome to Controversyville, come in, take a seat.
“Quiet hands” is a gentle request you might hear from teachers or parents in the US encouraging children to stop stimming. The consensus between autism experts now seems to favour not intervening unless it’s causing harm, no matter that it may look a bit different or cause others to feel uncomfortable.
On the Talk About Autism forum, a contributor called Claire (who is on the spectrum herself), writes: “[Stopping stims is] a bit like ‘teaching’ someone who is blind not to feel things in a room to find out where they are because we don’t like them putting their arms and hands out to do so.
“It has a purpose. Stopping it in order to make others feel better seems bizarre to me.”
Jo Redman has joined Anna Kennedy Online as a Patron today. The announcement was made at The Autism Show Excel. Here is Jo’s story:
I met Jo on Twitter after she watched my ITV News interview on our anti Bullying Campaign ‘Give us a Break!’This young woman is an amazing and Inspirational lady! :
Today I am so different to the person I was several years ago – I still look the same, sound the same and have all the same interests but how I look at my life and how I view myself has completely changed. I actually grew up without a diagnosis and life was pretty difficult. I didn’t know why I struggled and felt different, my parents didn’t know why their daughter wouldn’t join in with other children and my teachers just looked at me as a quiet, good little girl. There was some amount of bullying at school, a lot of it was active isolation meaning they sought to leave me out but there was also name calling such as ‘spastic’ and ‘freak’. Some of the name calling was probably pretty standard for kids at that time but it had a much larger impact on me as I felt different already. Fortunately for me I never experienced any physical bullying at school, it was always other children laughing at my expense over something I had no idea why they were laughing such as my appearance. I would go through periods of not talking all through playschool, infant, junior and senior school – even into the workplace.
Into my later school years things started to change around me more rapidly, I just got used to what my friends interests were and then suddenly they all changed into teenagers interested in boys, make up and pop bands. It felt hopeless, I had no interest in a lot of the activities they pursued and I didn’t know how to join in with this one. There were exams coming up and I didn’t know how to revise, I couldn’t concentrate on it. I became so anxious and down that my teachers noticed and there was a big fuss about it all. This is probably the point at which I should have been diagnosed but seeing how upset my mum was about the prospect of taking me to the doctors I begged her not to and tried to pretend everything was ok. I worked out how people expected me to act and tried to just be that, although it made me desperately unhappy and was very tiring!
After I left school I had a massive shock going into the world of work. I had absolutely no idea how it all worked and I really don’t know how I managed to keep my first job. My first job was actually as a receptionist and I am someone who doesn’t really like using the telephone! I got through this job by creating my own processes on how I would carry out my work and answer the phone. At the time I didn’t know I was creating processes but looking back I can see that I did. I worked in an office with other women and there was always friction and I experienced some bullying here. It got to the point where I would walk into the office in the morning and certain people wouldn’t say ‘good morning’ to me like they did to everyone else. There were email conversations going on between others in the room, gossiping around the coffee machine, conversations stopping as I walked in and even my incoming emails were forwarded to them so they could see what I was ‘up to’. A lot of this behaviour started as I found things difficult. My mum was taken ill and eventually diagnosed with MS so I had a lot of stress in my home life, I was trying to keep it together for the rest of my family and I didn’t know how to handle the emotional impact of what was happening to my mum. It was only this situation started to settle down that it really affected me. I got so anxious about certain things, I struggled to verbalise things and would withdraw into myself and not communicate at all. It got to the point where enough was enough and I decided I needed to know why I felt so different and what was wrong with me, why couldn’t I do things other people were doing.
I had a very good manager at work, who is now a very good friend, who supported me into going to the doctors. It took years and a crisis period for the mental health team to refer me for an assessment for Asperger’s Syndrome and to me when I was diagnosed it was the biggest turning point in my life. I felt so liberated to have the diagnosis because all these things I had worried about were no longer a mystery and as I learned about Asperger’s all the experiences in my past started to make sense to me. The psychologist who diagnosed me was so helpful to me, she said to me that the way I behaved, reacted and thought was not wrong but nor was it right, it was just different to how other people might behave, react and think and that that was ok. And at 23 years old that was the first time somebody had told me it was ok to just be me – that had a huge impact on me. Together with my husband who I’d met in sixth form, I learnt how I could ‘manage’ my life in a way that enabled me to do the things I wanted to do and since diagnosis I have done a lot of things.
I almost run my life like a business, I have processes for all of the housework, I set objectives for everything I want to achieve and break these down into targets and then into tasks. I have a giant timetable I use to schedule all these tasks onto. I started kickboxing when I was 13 with my dad, he thought it would help my confidence. When I started I set myself three goals, to be a black belt, to fight for England and to be a World Champion. I have now successfully done all three. I use kickboxing to deal with any frustration, it is an outlet for me and when I am fighting it is the only place I feel at home and natural. I love it and basically live for it. It actually took me two years to actually speak to anyone at my kickboxing club but now I teach my own class, I have lots of the younger kids in our team look up to me, I run my club’s website and I’m one of the top fighters in the club. I have been as far as Canada to fight and that is an achievement for somebody who doesn’t really like travelling. My team mates all know I have Asperger’s and they accept me as I am, they know when to leave me be and kickboxing has really been one of the only places I feel I fit in. I struggle to cope in airports, something I didn’t find out until I was an adult as I’d never flown, so my husband has to accompany me everywhere I go which doubles the cost of competing on a world level. There is so much stress involved in competing for me, we eat out every night in restaurants, I’m happy within my group of team mates but sometimes it gets too stressful and I have to leave the restaurant. I used to hate standing on podiums with everyone looking at me but now having had 5 world medals I am used to it and it is now an awesome feeling to stand hearing your national anthem playing. There is the stress involved in travelling and in being in a crowded, noisy arena all day – a lot of these things even my team mates don’t always appreciate but I work out how to get enough time out and I love watching the fighting too so that helps to distract me. Kickboxing has given me discipline and also the attitude to never give up. Just in 2013 I have won 2 British titles and beaten a tae kwon do world champion in a fight night. I have won bronze, 2 silvers and 2 golds at world championships. I also won Northamptonshire Sports Disabled Sports Achiever of the Year 2012. The success I have had in my sport has made me aim for that in other areas of my life.
After leaving my first office job I had a couple of other jobs in offices but eventually decided it just wasn’t working for me. I didn’t enjoy it and I struggled a lot with it and so I made a massive decision to train as a sport and remedial massage therapist. This is something I would have dismissed doing years ago because of the social aspect of the job, however I am now someone who doesn’t see why I shouldn’t do something like that. I really threw myself in at the deep end and only disclosed my diagnosis once I had registered and paid for the course. I made things harder for myself with my competitive calendar mixing with study. I was in Canada for the first week of October winning my second world title and I was sitting my exams at the end of the October – a lot to do in one month. I also had a bad hamstring injury which had put me out of action for 3 months from May to August this affected my training and my massage study in that I couldn’t practise my massage skills. Combine all of that with having to fundraise every penny just to get to Canada…it was very stressful! But I did it all to the amazement of the tutors who had subtlety suggested deferring on my course, however I don’t give up and I was determined to succeed. I qualified and I’ve just started my own business which I’m finding a fun but stressful challenge. Through my massage (and facebook) I have also since met up with some of the girls who used to make fun of me at school and they were actually afraid to see me for fear I would use my kickboxing skills on them but I’d forgiven all that long before because I see no point in holding on to negative experiences like that. I want to grow and move forward and concentrate on what is happening now. Now I am friends with those people and respected for the things I do and the person I am – to me that is more positive then holding a grudge on someone over something they did as a child.
Another change in me since diagnosis is in public speaking. I used to hate it, at school it took me over half an hour to stutter my way through a 5 minute speech we had to do in English. Even then I wouldn’t give up as my teacher had intervened asking me if I wanted to stop, however I carried on until the end reducing my teacher and some of my class mates to tears. Now I prefer public speaking to conversations, at least I have it all planned what I want to say. I have been into my local schools talking about my achievements which has been so beneficial for some of the kids who also have Asperger’s and those who don’t. They seem to get a lot out of it and that makes me happy. I have also been to charities and groups speaking to adults more about my story of Asperger’s and one of these even told me I was the best public speaker they had had which really pleased me given some of my history of struggling to verbalise things. I’m all about showing what people can do as opposed to what they can’t. I want to use my achievements to inspire others to have dreams and succeed, remembering I decided I would be a world champion at 13 and I didn’t achieve that until I was 25. There are so many things people with Asperger’s and autism can bring to society and that they can do especially with the right support and opportunity. I feel fortunate to have had some of the help and intervention, being diagnosed as an adult has made the diagnosis a very positive thing for me, I couldn’t change the struggles I had as a child so there was no point wishing it to be any different or wondering why nothing was done and so I resolved to make things the best I could from that point onwards. I seem to be doing pretty well and I now want to help others through raising awareness and offering what support I can. I look at having Asperger’s not as something that creates difficulties but something that means I have to work a little harder in other areas by looking at it like that it helps me feel in and regain control when things get hard. I also never compare myself to others, I only compare the difference in myself as a measure of my own improvement – I just want to be the best I can be in whatever I choose to do.