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Autism Posts On Social Media

When I was diagnosed as autistic a couple of years ago I started following a few autism charities and support pages on Facebook.  I find they often post some interesting articles, help me to understand my autism better and help me to explain to others what it can be like being me as an autistic person.  However there are times I get frustrated at some of the posts from these pages.

‘Top Ten Positive Autistic Traits’, ‘Terrific Traits of Autistic People’, ‘Positively Autistic’, Google positive autism and this is the kind of blog and Facebook post titles that come up.  These kinds of posts appear in my Facebook news feed from time to time and always manage to annoy me.  Sure, autism has some positive traits, but these are outweighed by the negative ones.  The fact that we even have autism charities tells you it is not such a great thing to have or we would not need the support.   A lot of the traits typically said to be positive, I have actually found to be negative in my life.

Positive Trait Negative Reality
Makes me honest, straight forward and unable to lie.  Some people say they like this about me. I am told that I can be too blunt at times.  Being overly honest can hurt others feelings, or make me appear rude.
Very good attention to detail, work more likely to be thorough and accurate. Too caught up with tiny details that may not matter over all and not always seeing the bigger picture.
More focused on a project, less easily distracted. Even when more important matters may come up, I could be too focused on something that is no longer relevant.  Risk of ignoring others to my loss whilst focused on a project.
More organised and better at planning. So organised that I worry or even panic sometimes if things do not go to plan or other people change things without warning.
Expertise in specialist interests. None of mine seem relevant to the job market. Have been told I can seem lecture like on some subjects that I am really into and bore people after a while.
 Exceptionally good awareness of myself. Including being aware of my faults and failings which can be depressing at times.

 

How am I supposed to be positive about my autism when I am called rude, selfish or an annoying know it all fairly regularly?  When you manage to annoy other people on such a regular basis without meaning to it can make you feel less than positive about it.

Some of the worst posts are those phrases you are supposed to share on your Facebook wall such as ‘My child has autism, what’s your kid’s super power?’ or ‘I bless all autistic children’.  Almost all of the phrases are about autistic children, it is as if once you are adult you are suddenly no longer autistic or it at least no longer matters.  A lot of the phrases make out how great it is to have autism and some almost make out we should celebrate it.  While it is not a tragedy, it is not something I am going to have a party for and get really excited to have.

imagesPosts like this do not even mean anything!

It would appear from some posts that I am not an individual, but some kind of clone.  It may seem petty, but the use of language matters when writing autism posts.  Too often posts are written using pronouns such as them, they, and all.  It makes it sound like all autistic people are exactly the same and that we have no individual personalities.  Often the worst examples of this can be found more in the comment sections of autism posts.  This gets annoying when you find out some of these people who comment are support workers, teachers or parents of autistic people who should know better.  ‘They are all so well meaning’ or ‘they are all so wonderful’, makes us all sound like we are too stupid to know any better, and that every time we say something less than helpful or nice we actually do not mean it that way.  Yes there are times I say the wrong thing and appear selfish or rude when I do not mean to, but there are times I am less than well meaning.  It makes it sound as though we can never do any intentional harm.  I do not like to think of myself as a nasty person, but I admit to times I have said or done things that make me less than wonderful, and I knew I was doing it.  Not all autistics are wonderful, loving or nice, nor are they all horrible, rude and annoying.  Autistic people have personalities that also affect behavior and attitudes, just like everyone else.  Some days I am in a bad mood and not so great to be around.  Sometimes this is my autism, sometimes it is just me having been really annoyed by something or someone, my hormones or lack of sleep.  I am not an all, they or them, I am me.

I think more posts on these pages should be written by autistic people themselves.  They can give hints and tips they have found useful to other autistic people and tell parents and those who work with autistic people what it can really be like for some of us who actually have it.  One of the best support groups on Facebook I have found is The Girl With the Curly Hair.  She is autistic and writes very well about what it can be like to have autism.  It is refreshing as an autistic female myself to have another autistic female who can communicate well instead of the usual male bad at communication stereotype.  Plus the comments on her posts tend to be from people who seem to understand what being autistic can really be like.

Try not to share those autism phrases that mean well, but actually can come across as slightly patronising a lot of the time.  If you should choose to comment on an autism post remember not to lump all autistic people in as one mass.  That aside there are some really good posts about autism out there and they can aid understanding, but try to remember not every post will apply to every autistic person, autistic people are individuals.

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The Disabled and Other People

I am an avid user of Facebook, I have found it a great way to connect with other disabled people who have similar disabilities to mine.  I am a member of several groups and pages for various disability issues.  I find that it helps to have a place to share our thoughts and issues regarding our conditions.  Often we ask each other questions that only others in the same kind of situation will understand  or be able to answer.  It can be very handy for example to ask a group of people who have already had the same surgery you are about to undergo what things we might need to consider taking with us to the hospital or to have ready at home for afterwards.

Whilst I am on these groups I see a fair number of posts about the way disabled people are treated by others.  Some posts are just people using the group as a place to vent and then move on from the situation.  Some people are trying to raise awareness and see if it has happened to anyone else.  Sometimes we even come up with ideas to help deal with some situations.  I decided to try to find out what annoys the disabled most about other people’s attitudes towards them.  Then I hope we can help raise awareness of these things and show the public how we would in fact like to be treated.  The results were interesting and varied.

Question: When it comes to being disabled in any way, what annoys you most about other people’s attitude to you or your disability?

  • They think that if you don’t look disabled or ill then you must be faking it.

You can’t always see signs of disability in a disabled person.  I had a bad hip and sometimes I used a walking stick and then people knew I had mobility issues, but during periods when I did not need the stick people would often not believe me about my hip hurting or not being able to walk very far.  Someone asked me once if I fake it for attention and some people seem to think you would fake it to get a disabled parking badge or benefits.  These people are very annoying.

  • When they pass judgement on you without bothering  to check for facts.  Like parking in a handicap space and having people giving you filthy looks because you are not old or decrepit, so you obviously have no need of the space, regardless of the fact you can’t walk far!

There seems to be a certain type of older person who think that just being older gives them more rights to things than the rest of us.  The ‘I’ve worked hard all my life and paid my taxes, so I deserve this hand out’ brigade.  Being old does not automatically mean you can have a disabled parking badge or certain benefits.  If you can not walk far without severe pain regardless of age you can claim a blue badge.

  • When someone takes something out of my hands and says they’ll do it for you.  If I wanted help I am capable of asking.

Just because a person has mobility issues does not mean their arms and hands do not work.  A person who has a missing arm can still use the other arm and their legs.  It is kind of insulting to have people automatically assume you can’t do something as if you must be brain dead as well as unable to walk or whatever it is.

  • It’s annoying when people say they understand as they had a sore leg the other day.  Not really the same scale of pain.

When I explain my hip issue to some people they say how they once broke their leg and know what I mean.  A broken leg can heal, a hip that grows undersized and deformed and has not regrown by adulthood into the right shape will never mend.  They did not end up needing a whole new body part like I did.  The pain before my replacement was every single day only varying from painfully sore, but I can walk, to so painful I can not move.  Unless you have had chronic pain you have no idea what it is like knowing that the pain is not going to end any time soon.

  • Patronised, being told I am brave.  (I am not brave, I am just living my life like everyone else, no one has a pain or stress free life.)  Or worse, ‘It must be nice for you to get out’.

If you are born disabled you have only ever lived that way so it is not brave it is just living.  If you have an accident is it brave to want to carry on living?  No, it is a natural human instinct to carry on living.  As for being nice to get out, well depends, maybe it was not nice to get out as you were feeling lazy that day or tired or hate the place you are going, just like everyone else.

  • Once you need to use a wheelchair you become invisible.

People start talking to your carer rather than you or fail to even notice you are there.

  • Ignoring me when in town with hubby.  Then asking him how is Debbie doing.  Hello, I’m here ask me.

Unless the disability specificity affects the voice, most disabled people can speak perfectly well and in fully formed sentences too!

  • People moving or pushing my chair without asking.  You don’t grab an able-bodied person and move them, why do that to me?

‘I am just going to move you over here out of the way’ says the woman in the cafe to my friend in her chair.  Err maybe she does not want to sit right in the corner pushed up against the wall.  If she was in the way of the queue or another table, if the woman had asked her politely if she would not mind moving and explained the situation I am sure she would have moved as she is sensible and kind like that.  That way she could pick her own spot to move into and keep her dignity.  If a chair has self-propelling big wheels, there is usually a reason, as they are perfectly capable of moving themselves.

  • That I can’t be a single mum and disabled.

Alison Lapper the disabled artist is a good example of how you can be both a single mum and disabled.  She is clearly a wonderful mother to her son, despite having no arms and truncated legs, as shown on the BBC’s Child of Our Time.

  • Because of bad media coverage on benefit cheats the constant need to justify my disability to strangers and authorities.

Having to constantly prove that you are disabled enough to warrant your disability benefits or disabled parking badge can get very wearing.  A person does not get given these things very easily, it takes considerable effort and time to get benefits, sometimes having to go to medical assessments miles from home.  A very few people do somehow manage to cheat the system, but the other 99% of people on disability benefit are genuine.  These few people are very annoying as they make the genuinely disabled or sick look bad and the fact that the press make a huge deal out of benefit cheats does not help.

  • Being told I can’t be in that much pain as you are smiling.

When in loads of pain every single day you try to find ways to distract yourself from the pain and the fact that you are smiling for all of ten seconds does not mean the pain has gone away, it means you just for a few seconds managed to not think about it quite so much.  Also some smiles might be fake to please other people in a certain situation, but inside the person still feels lousy.

  • When people say well done to us for doing everyday things.

Wow I managed to read a book that won the Man Booker prize and was considered a reasonably hard read!  Could the classroom support worker have been any more patronising at college?  I love to read and have done from a young age.  Having a learning disability does not necessarily mean I can not read and write.  Unless you know the disabled person has managed to do something they have been struggling with for a very long time, it is best not to praise them like you might a dog or a small child.

  • As a job seeker the law says not to discriminate however I get the impression that potential employers see me as a liability.

You can’t prove the employer did not hire you due to your disability, they will come up with some other reason if questioned, but sometimes it is obvious what they are really thinking.  They ask you how you would manage certain tasks and start to question your health during the interview.

  • When someone says ‘well you look OK to me, stop making a fuss’.

Most disabled people only make a fuss when they feel they are not getting fair treatment or really, really need help with something.  Most of us are not attention seeking.  As stated before not all disability or illness is obviously visible.

  • I have been turned away on public transport as buggies are using the disabled spaces.  One bus driver refused to lower the ramp as he could not be bothered.

A child can be more easily lifted out of a buggy than a full-grown disabled adult from a wheelchair.  By law buses have to provide disabled spaces and they can only let the space be used by buggies if there are no disabled people wanting to use them.  Parents who refuse to fold the buggy and make space are just down right rude.  Not lowering the ramp is denying a disabled person access to services which is illegal.

  • No disabled toilets in eating establishments and those with steps to them.

How little brain power do you have to make a disabled toilet with a step up to it?!  Well I have seen this done more than once, idiots.  Restaurants and cafes that seat over a certain number of people have to have toilets and they have to make reasonable adjustments so that disabled people have access to a toilet.  If they do not have disabled toilets they could be breaking the law.  What also annoys me is disabled toilets being used for storage or blocked so you can not use them.

  • It’s the tuts that get to me more than anything.

Tuts as if a disabled person should not be there and should be hidden away out of sight, how old-fashioned is that view!  Or the tut that says this is typical of a disabled person, making a fuss, when all they want is the same access to something as everyone else.

  • I remember someone telling me I was lucky to have a mobility scooter as it meant I did not have to walk anywhere.

I doubt the person chose not to be able to walk far.  I also bet they had to pay for the scooter themselves, and I do not call having to fork out hundreds or thousands of pounds just to be able to cope with a trip to town lucky.

  • People who say you are too young for a total hip replacement.

How do they know, have they had any medical training?  If a surgeon has agreed to the operation I can’t be too young, it is kind of obvious.

The answers of-course relate to the groups the question was asked in.  The group with the largest number of responses was Want my space? Take my disability!   The group campaign against the misuse of disabled parking spaces and blue badges for the disabled.  So quite a few of their answers related to parking and transport issues.

I also got a fair number of responses from Perthes Disease in Adults, a page I run myself.  This page relates to the hip condition I had as a child and is about what happens later in life when we grow up, but still have hip pain.  So the answers from them were often mobility and hip surgery related.  I also asked the question on my own wall as I have a few disabled friends and got a couple of responses.