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I recently heard a radio programme that was very moving and very interesting.  It illustrates my views on the disabled very well and goes with some of my blog posts so I thought I would share it.  It is about a child who is able to communicate only by using an alphabet board using his eyes, but boy does he communicate.  He and his parents are now campaigning for special needs education to be more meaningful and actually teach the children.  As the child himself puts it speical needs education was like ‘high end baby sitting’ for him and I can relate in some respects to that.  I found the programme inspiring, showing that you should make use of the skills you do have and not to worry about what you can’t do.  I would highly recommend people to listen to it.  Please copy and paste the link to listen.  (Sorry if you are aborad and the show will not play).

http://www.bbc.co.uk/programmes/b07zxnh5 Hardeep’s Sunday Lunch series 5 ‘Song of Voice’

 

 

High Functioning Autism

I have autism, what is often known as high functioning autism.  This means that I am on the autistic spectrum, but have average intelligence.  It also means I can basically function on my own as everybody else can, but I can struggle sometimes with certain situations.  Sometimes people with high functioning autism can find it hard to get a diagnoses as they don’t exhibit all the typical signs of autism and often seem to be functioning well.  The idea that I was on the autistic spectrum did not come up till I was in my early teens.  A child psychologist first diagnosed me with OCD, which is something people with autism often have.  However I am not even sure I am officially diagnosed as autistic, but the psychologist definitely brought it up as something I probably have, and having looked into it, I am pretty sure I do.

I am glad I know that I know I have it as it helps explain why I often feel like I do and helps others to understand me.  The problem for me with autism though is that I am fully aware I have it, but can not seem to do anything about it.  I have wished in the past that I was more autistic in some ways to the point where I was ignorant of the fact I had it, then it might bother me less, but this thought never lasts long.  It can be frustrating to look back at some situations and realise the reason it did not go so well was mostly your own fault, but at the time you could not see what you were doing or saying was the wrong thing.

The main way in which my autism affects me is in social situations.  I find it hard to make and maintain friendships.  I always felt like I was a bit of an outsider in school and preferred my own company sometimes.  I found it hard as a child to read people’s emotions and body language sometimes misjudging the situation and saying the wrong thing.  Over the years I think I have got better at reading emotions and understanding other people, but I can still struggle with more complex situations.  I can come across as selfish or self-centred with some of the things I say, but I do try to think of others and not just of myself.  I have noticed that I can be quite good at responding to social interaction, but I struggle at initiating it.  I often fail to make good eye contact at first and come across as slightly shy, when in fact I am not shy at all.  The website WebMD describes it well:

‘Unlike People with other forms of autism,  people with high functioning autism want to be involved with others.  They simply don’t know how to go about it.  They may struggle to understand others’ emotions.  They may not read facial expressions or body language well.  As a result, they may be teased and often feel like social outcasts.  The unwanted social isolation can lead to anxiety and depression. ‘  WebMD

I was bullied in school and think my lack of social skills was a huge factor in this.  I have had some serious anxiety and depression on and off since I was a teenager, some of which was brought on by being socially isolated and feeling very lonely.  I have managed to make a few friends, but still do not have very many and do not consider myself to have much of a social life.  I sometimes find it easier to get on with older or younger people than people of my own generation.  I have always felt a connection to older people, they just seem to understand me and have more in common with me.  I find it easier to interact with my two-year old nephew than a lot of people my own age.  Very young children are clear with their emotions and with what they want to do, they do not hide how they really feel and I can understand what they are asking of me instantly.

Another way in which my autism manifests itself is in my emotions.  I am a very emotional person with a high emotional response to a lot of things.  In school if I was frustrated, which was quite often, I would get very angry with the teachers and other staff.  I would have full on temper tantrums as a teenager in front of my whole class.  I think I did this in primary school when very little, but I seemed to stop after the infants, but it started up again in my first secondary school.  I think it started towards the end of year seven when the bullying got too much for me to handle any more, and I started yelling in class at the bullies.  After that I started to yell at the teachers when they failed to do anything about the obvious bullying going on in front of them.  At my next school  I used anger to express my frustration when I found the work too easy or too hard.  I could switch from a perfectly OK mood to a full on temper tantrum in a matter of seconds.  I would then get sent out of the room or choose to walk out and cry for ages in the corridor.  I never planned on having a tantrum before I had one and I am sorry for the disruption they would cause for the rest of the class.  I stopped having so many classroom tantrums once I went to college, although I had the odd few at first.  I think I felt less frustrated at college as you could pick what you studied and the work was more at my level.  I still used to have tantrums now and then at home which I feel awful about now as it was so unfair on my mum.  I do not seem to have full on tantrums now, but I do still get too angry at my parents sometimes.  I shout too much at them instead of talking out my problems with them at times.

I also get overly anxious about things and then this can lead to feeling very low, even depressed at times.  I feel helpless, like nothing I do will be worth it and I find this spoils my enjoyment of doing the things I would normally enjoy, so I simply stop doing things.  I have spent whole days in bed not bothering to get up as it is simply not worth the effort.  If this carries on too long I start to get negative thoughts that play on my mind over and over, making me feel even worse.  Although not totally linked to my autism, I am sure it is in some way, making me less able to deal with my emotions in a more healthy way.

Other ways in which I find my autism seems to effect me include my need to be perfectionist about my hair and clothing.  I resist change in my immediate environment and  hate when things are not as I left them.  Mostly now I can cope if someone makes minor changes in the house, but if someone does something in my bedroom without me knowing I can get very upset still.  I find fine motor skills take me longer to learn than most people, I know I was older than most of my peers by the time I could tie my own shoe laces for example.  I have always had a low pain tolerance and this is supposed to be a common trait in autistic people.  Another thing autistic people are supposed to enjoy doing is keeping large collections of things, which I most certainly do with my charity badge collection and my postcard collection, although unless this gets too out of hand, I can not see this as a problem.

There are other symptoms of having high functioning autism I do not seem to have, but maybe if you asked my family they would consider me to have other autistic traits that I have not recognized myself.  Sometimes I find it hard to know when my personality stops and my autism starts.  However autism does not define me and is not who I am.  I have heard autistic people referred to as ‘them’ or ‘they’, such as a woman I met in a chat room who works with autistic school children who said ‘they are all such lovely people’.  I had to point out I was autistic and far from lovely at all times and not all my unlovely parts of my personality could be put down to autism.  That would be using my autism as an excuse to get away with bad behaviour and selfish acts at times when it had nothing to do with it and that is something I would never do.  I have a personality outside of my autism as does every single person with autism no matter where on the spectrum they come.

Some Disability Myths Dispelled

There are a lot of myths I hear about disability and people who are disabled.  I would like to dispel some of those myths and explain how I see things from my point of view as a disabled person.

All disabled people are sick or even dying

This is not true for all disabled people.   Some are born the way they are and the condition will never get worse from some sickness.  Some are sick, but are far from dying, well no more than the rest of us are dying.  My condition did get worse over time, my hip got more and more arthritic, but arthritis in my left hip was never going to kill me. The use of wheelchairs in hospitals for sick people may have contributed to the way  people view someone as being sick if they use a wheelchair.

Someone in a wheelchair can’t walk at all

There are many reasons a person may use a wheelchair and not being able to walk in any way at all is actually quite rare.  Mostly people who are disabled use them when they go out as they can not manage to walk very far before they experience pain or exhaustion.  In my case I could walk short distances and mostly went out without my chair if I knew I would not be walking all that far or I could break up the walk with plenty of rest stops on benches.  Some days I could actually walk further and rest less, but on bad days I could not walk very far at all.  I used a wheelchair for longer distances as crutches could often get tiring or hurt my hands after a while.  Another reason people use wheelchairs may be that they can walk, but only very slowly and they need the chair to help them keep up with their friends and family when out.  It might be that the person is only using a chair for a short time due to being weak after surgery or an illness or whilst a broken bone heals.

Disabled people are brave and inspirational

Well this might be true for some disabled people, such as say Steven Hawking, but only to other scientists and people who aspire to work in science and it has nothing to do with him as a disabled person.  If I inspire people that is great, but I doubt I do, unless people aspire to be still jobless and living with their parents aged twenty-eight.  I do not see myself as brave at all, I am wimp when it comes to an awful lot of things, in fact sometimes I was too afraid to try things in case it hurt my hip.  Disability requires adapting to a lifestyle, not bravery.

Disabled people need pity

While I do not see myself as especially brave, I also do not see myself as someone to be pitied.  Disability is often seen as a tragic unending burden.  OK so many disabled people need extra help with things, but everyone needs help sometimes.  Pity is not the same as understanding and sympathy, which just shows you are being thoughtful.  Where as pity as this disabled person puts it  ‘is generally a reminder that somebody else thinks you’re screwed,’ (Disabled Don’t Want Pity).

Disabled people only want to hang out with other disabled people

This assumes that disabled people are all a one-dimensional group, all having exactly the same interests.  I have a range of friends both disabled and non disabled.  I do not automatically get along with every other disabled person, that would be like every green-eyed person getting along just because they have the same eye colour.  My disability means I may have some things in common with some other disabled people meaning we can bond somewhat, but I do not have things in common with every disabled person.

Disabled people don’t have sex

It is sometimes assumed that disabled people are not interested in or simply can’t have sex.  Well in some cases sex maybe more physically limited in the number of positions they can use, there is normally at least one way they can manage sex quite comfortably.  People with learning disabilities are sometimes assumed to never understand or think about sex, but as with everyone else the ranges in sex drive varies.   As Terri Couwenhoven of Woodbine House publishers of books about special needs points out, ‘the initiation of puberty is not dependent on social or emotional maturity or many of us would never have matured!’ (Woodbine house) Which makes the case that all children need sex education of some kind no matter what type of disability they have, be it physical or learning based.

Curious children should not ask a disabled person about  their disability

Children tend to give into their natural curiosity more than adults, which in this case in a good thing.  When they ask a disabled person about them being different it is obvious they do not mean them any harm.  I think if we educate them young about disabilities and expose children to disabled people they will grow up to be less negative and ignorant about disability.  Parents sometimes tell children it is wrong to ask a disabled person about their condition, but if a child gets told off they may see disability as something bad, that all disabled people are to be avoided.

Having a type of learning disability means you are stupid

No, it just means your brain processes information in a different way.  You still have the ability to learn.  I have dyscalculia which means that I am bad at maths, I can’t calculate sums in my head very well, I am rubbish at directions and can’t judge distances very well.  It is like my mind is made up of filing cabinets and the maths draw got stuck, it will open a tiny bit to reach in and pull out the very beginnings of something, but I can’t seem to reach the files further back.  However my English file for reading and writing fully opens, as do most of my other files.  Having trouble in one area does not mean you have it in all areas.  However some times at school it seemed to feel like people thought you must be all round stupid if you have any type of learning problem, then when you said something intelligent they look at you with a sense of shock or assume you must be wrong.  Most people with learning disabilities are good at other things, hardly anyone is good at everything.

People with Learning Disabilities are just lazy

I have heard it said more than once that a learning disability is just an excuse to not put in any effort and to be lazy.  In most cases this is simply not true, I did try very hard at my maths for years, but it was very hard to be motivated by a teacher who called you lazy.  OK, so yes sometimes people with learning disabilities can use it as an excuse to put in less effort than they should, but it does not mean this is the case all the time.

All mentally ill people are violent or unpredictable

Most are no more violent than anyone else.  In fact people with mental health issues are more likely to be victims of violence than perpetrators.  When violence does occur it is mostly for the same reasons as it is with everyone else, either they feel threatened or had excesses use of drugs or alcohol.

People with disabilities are only able do simple, repetitive work

As with everyone else people with disabilities have a range of skills to offer, which differ from person to person.  If you stuck me in a factory job that was exactly the same simple task every single day for hours at a time, I would probably end up having some kind of break down from the shear boredom.  I do not mind work that is mostly the same each day, but at least give me some interaction with other people or something that makes me use my brain somewhat.

Disabled people need protecting from failing

Disabled people have a right to experience a full range of human emotions including disappointment and failure.  No one likes to fail, but sometimes it is the bad times that make us stronger and make the good times better.  Often it seems to  come from people thinking that a disabled person has enough of a burden to deal with and they could not cope if they failed.  However never letting a child fail because they are disabled may in fact just set them up for a much  bigger failure when they grow up and realise the world outside of home or school won’t protect them from it.

Are there any other disability myths you sometimes come across?  It would be interesting to hear how other disabled people react when someone makes a wrong assumption about them as a disabled person.

 

Disabled people are not all one homogenised group we are individuals

Disabled people are not all one homogenised group, we are individuals

Crippen, Disability Cartoons

 

 

 

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Wrapping in Cotton wool

I have a lot to thank my parents for, they have been wonderfully supportive of most  aspects of my life over the years and done so much to help me achieve what I have in life.  Looking back one of the things I am most grateful for is  that they did not wrap me up in cotton wool and try to shield me from the harsh realities of the real world or treat me as precious object that would break if I was left alone to do my own thing.   They never once tried to dumb things down for me and treat me as stupid.  When I was diagnosed as disabled aged seven my parents rightly saw it as a physical thing and knew it did not affect my mind or my ability to learn.  Then some years later when we found out I am high functioning autistic and OCD they still did not treat me any differently.  It was also clear I had some learning difficulties, mostly with maths and logic, but they could see that I was not stupid at everything and it did not mean I had to give up trying and still could learn things.

I am sad to say that this is not always the case.  I spent three years in a special needs school for disabled children, but this was not my parents first choice for me, it was the only school left  that would take me at the time.  I met some lovely people, but it was often very frustrating how they were treated.  If you talked to some of my class mates they could come across as very bright people, but some of them could not do much for themselves.  Part of the reason for this I think is that they were wrapped up in cotton wool.  Firstly some parents seem to get scared when they learn their child has a disability or is sick in some way and then are afraid to let their child do anything for themselves just in case they hurt themselves or get more sick.  I am sure it is very hard for parents when they learn their child has a problem, but that is no reason to start treating the child radically differently from how you may otherwise have done.  Some parents may not even realise they are doing it, but there has to be a point when they think they are doing more for the child than they normally would surely?

Then there was how the kids were treated in school, in some classes it felt like I had not moved up a year, but gone backwards.  I was doing things I had done already in my previous school, but was supposed to be in a higher year  class.  I realise that some children got behind  somewhat having been off sick or in hospital, but some of my class were clearly smarter than they were being given credit for.  We took Entry Level Certificates for most subjects, which is basically a useless qualification in terms of getting on to a decent college course or jobs wise.  As an Entry Level Certificate is worth fourteen school attainment points at its highest level, which is less than the lowest grade at GCSE which at grade G gets you sixteen points.  I would have liked the choice to do more GCSEs in certain subjects and am sure some of the others in my class could have done them too.  I admit in some subjects I think Entry Level was about right, but we were given no say in the matter.  I think children, even special needs ones need a say in their own life in some way, especially at the age of fourteen and fifteen.  To be fair some teachers were good and saw that some of us had more potential and gave us slightly more challenging work.  I always enjoyed those classes more when I felt I was learning something.

For someone with special needs learning may take a little longer.  For me this includes practical tasks such as learning to tie my shoe laces which I took me till I was about nine or ten or learning to tell the time which I never fully mastered till I was about eleven.  However my parents, especially my mum, never gave up on me and refused to let me give up either.  If you do not have patience with special needs children and give them the extra time they need to learn things, they will end up very dependent for the rest of their lives.  All children need help and support, but they also need to learn independence and the  skills that will help them achieve that.  I realise that not all special needs children can grow up to be independent, but if given the chance when young to learn I feel a lot more could.  Special needs people are not always as vulnerable and incapable as some people may think.