In March this year, I worked with Humphrey Hawksley (who is a leading BBC foreign correspondent, author and commentator on world affairs) to try to help Alex Spourdalakis, a severely-autistic American teenager, who was being shackled to a bed in a Chicago hospital, and becoming iller and iller, partly because he was getting no excercise and recently confirmed gastro-intestinal disease . As details of his case unfolded, the flaws in the health and social care system into which Alex was entwined spilled out. He only had two places to go – hospital where he was tied up, or home where his family did not have the means to handle him.
Since November, police had been called to the apartment at least seven times to help Alex’s mother and carer restrain him. On Sunday, Alex was found dead there with multiple stab wounds to his chest. His mother and a carer were lying on the floor in what was described as a disorientated condition. Police say there was a letter describing the problems of dealing with his severe autism.
All involved knew the challenges. So, why did Alex have to die? Enough is Enough!
A little while ago I wrote about how Parents and carers alike should find that little bit of time to ‘chill’ when they can and ‘take 5’ from it all and how other people in society need to take time to understand exactly what it is that they all go through.
In among the many comments I received was one from a lady on the Spectrum who agreed that it must be stressful being a parent of a child on the Spectrum. This person pointed out though just how stressful it is being that person on the Spectrum having to hear just how difficult it is for others to cope with them! Also she pointed out just how difficult it is to exist in a world that only seems to accept a certain set style of person.
As much as I would like to I can’t write about ‘Everything’ in one blog (trust me I would write pages and pages if Anna didn’t rightly pull on the reigns lol) If we try to cover too much then things become jumbled and lost….so today I am going to take on that ‘other side of the fence’.
No matter how considerate and understanding we think we are we all still have our own ‘viewpoint’ that is different to everyone else. When we are calm and relaxed we are able to not only take on board our own concerns but also be more open to others. This is great because at these times we can sit back and be more understanding. The problem with this is that this state of mind doesn’t stay with us all the time. Once we become busy, preoccupied or stressed and under pressure this state of mind slips away. Just like those on the spectrum we eventually reach a point, which is further on but still there, where we start to struggle with processing information. At these points it’s amazing, often without realising, how narrow minded and self centred our thinking can become. I don’t mean this in a negative way; it is just a natural defence that happens when we are under real pressure very similar to that of ‘fight for survival’.
So let’s all imagine that situation where someone on the spectrum starts to show challenging behaviour. Screaming, shouting, throwing things around and the tension is building. You’re tired, you’ve had a hard day at work and very little sleep the night before. You need this situation to come to an end right now and at that very moment all those basics that you know will usually help you just evaporate from your mind. It is amazing to think how quickly under those stressful, tired states we can forget that the person presenting this behaviour to us doesn’t in any way mean it. They haven’t made a conscious decision to behave this way for no reason, they are reacting to something that has happened which may appear nothing to us but to them could be a critical thing. This is where we need another moment to ‘take 5’ or just ‘take stock’. This time it isn’t for our benefit but for theirs. It is important to just stop and remember that they can’t help the way they are feeling and what they are doing. I know…I REALLY DO KNOW it is not always easy to stand back and think about this especially when someone is maybe trying to throw something at you! I myself came to the aid of some night staff who were holding a bedroom door closed because the person the other side of it had woken in a bad way and started to destroy his room in the most vocal and physical way. I took over from the distressed staff and gave them the chance to go downstairs so they could get a routine put in place whereby we could safely support the lad to get straight into his day routine and away from this situation. I spoke softly through the door to the lad using few words to lessen the information he was having to process and to bring the tension down. After a while the screaming and smashing stopped with the odd reply of ‘yes’ and ‘no’ coming back. When full silence had returned I asked if I could come in the room and slowly opened the door…….let me tell you I have never closed a door so quickly again in all my life as a television flew through the air straight at me! This caught me off guard and I panicked forgetting the basics and suddenly to me the person the other side of the door was no longer Autistic and responding to whatever had upset him during the night, now this was a guy that wanted to introduce my head to a flying television! My slamming the door shut and shouting ‘Don’t do that’ and ‘Stop’ was a natural response (I had just woken up from only 2 hours sleep on a sleep in so was very tired) but it wasn’t the right response as this straight away heightened the tension again and the screaming and smashing the other side of the door returned.
Closing the door was the right thing to do, as none of us wants to wear a television, but slamming it and yelling was not the right thing. At that time more than ever I needed to keep in mind what was happening ‘the other side of the fence’. On the other side of that door was not a violent nasty person out to hurt me but a very distressed and frightened young man. He wasn’t smashing the room up and screaming because he is a vandal but because he was very anxious and distressed by whatever it was that had upset him. The answer here is to find the cause of the ‘behaviour’ or to ‘distract’ the person away from the situation. The wrong thing to do is to try and tackle the behaviour head on without knowing or understanding what the problem is. If you don’t know what is causing the problem how can you deal with it?
To fully understand what is happening you have to be able to see things from that ‘other side of the fence’. If you can put yourself in the position of that person and understand what it is they are seeing and feeling then you will find things a lot easier to deal with.
I think it is important for us all to understand just how painful and distressing some things can be to someone on the spectrum. When we run late for things it annoys us and might make us a little angry. The same for when our plans suddenly get changed. It’s not the end of the world and we will get over it. That is OUR thinking from our side of the fence. If you are on the other side of the fence and timing/schedule is a very VERY serious thing to you without which your entire life crumbles then you will react in a very different way! You won’t be a little annoyed and see it as something that can be overcome. At that moment the world has stopped. You suddenly lose comprehension of what is happening. Anxiety takes a grip and communication drops. Right now you need to express all these thoughts and feelings but with communication having dropped you can’t just say ‘oh I say I’m upset…’ you have nothing constructive to string together and the only way to show this distress is to scream, lose it or break things. You are not doing this because you are bad or want to be destructive but because right then something critical is happening and you need to get people to listen and understand you right now!
Yes I know many of these things can happen quickly so there isn’t always time to take stock and reappraise the situation but if you can just manage to think about how they are ‘feeling’ and what is happening inside them you will find it easier to manage that situation because now you shape it in a way that helps them rather than a way the conflicts with them.
Understanding the other side of the fence won’t just better enable you to deal with such situations but also give you more of a chance to pre-plan things in advance. By stopping and looking at everything you are organising with that view point from over the fence you will be surprised just how many things you suddenly notice could be a problem and so can change things to avoid those situations.
I think another comment that we must all think about is the one that the young lady made about having to hear what others around you say such as mentioning how ‘difficult I make things’. I know none of us would ever mean to make a comment that could hurt someone but it is easy to say something that can be taken in that way. A side comment such as ‘well it’s difficult to plan things with you in mind’ is just being honest and no harm is meant but to that person who already has to deal with their own issues of being on the spectrum this could eat away at them and really bother them that they cause so much stress. Just imagine if this was playing on your mind how much it would bring you down.
These things we can easily work on ourselves but the biggest task is to start and get the rest of society to also take into account the ‘other side of the fence’. The sooner we can raise awareness so that everyone stops to consider this then the sooner we can make society more inclusive of everyone on the spectrum.
(Written by Austin Hughes of AKO)
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.
The parents of a boy with autism have won their legal battle to have him taught at a private school in Suffolk.
Heather and Tony Clarke said the needs of their son Alex, 13, were not being met at Needham Market Middle.
An education tribunal hearing in Ipswich ruled the county council should pay for specialist schooling in Brettenham in Suffolk.
The Clarke family, which had to pay its own legal costs of £27,000, said it was “overjoyed”.
Alex, who is due to go to secondary school in September, has a range of conditions including autism, attention deficit hyperactivity disorder, dyspraxia, dyslexia and auditory processing difficulties, said Mr and Mrs Clarke.
The decision made by the Special Educational Needs and Disability Tribunal at Ipswich Magistrates Court, which will allow Alex to attend the Centre Academy in Brettenham, followed an 18-month legal dispute.
Mr Clarke said: “We’ve got a big legal bill, but it’s been worth it just to give Alex a chance of living an independent adult life.
“Needham Market Middle have been supportive and tried their best, and Stowupland High would have as well, but they wouldn’t have been able to fulfil his needs.
“Brettenham specialises in teaching about 50 children like Alex and he’ll be able to learn a lot more because there will be fewer distractions and he’ll have access to speech, language and occupational therapists which he wasn’t getting enough of.”
A council spokesman said: “We will be implementing the decision of the tribunal and Alex will be going to the Centre Academy, Brettenham in September.”
The Clarke family said it would not be seeking to claim the costs of the legal dispute with the authority.
Almost 30 percent of young children with autism also show signs of attention-deficit/hyperactivity disorder (ADHD), a rate that’s three times higher than it is in the general population, a new study shows.
“We don’t know the cause for ADHD in most cases. We don’t know the cause of autism in most cases. It’s not surprising that something that’s going to affect the brain and cause one developmental outcome may also cause a second developmental outcome,” said Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at Steven and Alexandra Cohen Children’s Medical Center in Lake Success, N.Y. He was not involved in the study.
Kids in the study who had both problems together also tended to have more difficulty learning and socializing than children who had autism alone.
The researchers noted that the treatment of ADHD may benefit children with autism if they aren’t making progress with autism treatment programs, which often require sustained focus on specific skills.
“In a child [with autism] who has great difficulties with attention, or hyperactivity or both, you really have to layer in another level of intervention strategies for them,” said study author Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.
For the study, which is published in the June 5 online issue of the journal Autism, researchers asked parents of kids enrolled in a community-based study of child development about symptoms of attention and hyperactivity — whether or not children could wait their turn, interrupted others who were speaking, fiddled with things during meals or could not slow down, for example. All the children in the study were between the ages of 4 and 8.
Out of 62 children diagnosed with autism, 18 (29 percent) also showed signs of ADHD.
A previous study of slightly older children found that 31 percent of children had the two disorders together.
“It’s not surprising,” said Dr. Patty Manning-Courtney, director of the Kelly O’Leary Center for Autism Spectrum Disorders at Cincinnati Children’s Hospital Medical Center.
“What’s good about this study is that they went to the trouble to look at who met diagnostic criteria and what was different about those children,” said Manning-Courtney, who was not involved in the research.
All the children who had both problems together were boys. Boys have higher rates of autism and ADHD than girls, research shows.
One limitation of the study was that researchers had to rely on questionnaires that are meant to spot ADHD in typical children. There really aren’t good tests for attention and hyperactivity developed for kids with autism, and their problems may look different than those seen in typical school-aged children.
Please see this link for the rest of the article https://www.webmd.com/brain/autism/news/20130606/autism-adhd-often-occur-together-research-shows?page=2