To be sick of hidden disabilities getting overlooked

(125 Posts)
ProudAS Wed 02-Jan-13 16:59:42

We've got a massive great thread on this board about accommodating wheelchair users on buses but I don't recall seeing anything on such a scale about hidden disabilities such as autism.

Tourist attractions, hotels etc nearly always publicise how they can accommodate visitors who use a wheelchair or guide dog but nothing for those who may have difficulty with crowds, need routine etc.

A friend of mine who has Aspergers got ridiculed by his employer for it and bullied out of his job. I doubt that colleagues would have stood by and let someone with a physical disability be treated in this way. His condition also meant that he couldn't face going to a tribunal.

Another ASD friend got forced out of a job because he was having difficulty dealing with people. The employer's attitude being that he could be "normal" if he tried hard enough.

A local man with autism got forced off a bus after failing to understand a figure of speech from the driver who then jeered at him along with other passengers and told to pull himself together.

Despite having Aspergers myself I got accused of being anti-disabled after saying that a wheelchair user had made a nuisance of himself. The statement had nothing to do with his disability and everything to do with his insulting and bad mouthing my colleagues.

Parents whose children have autism/ADHD being called bad parents because of the way the child is or abruptly told to give them a good clout to cure them. Explanations about the child's disability get met with "He doesn't look disabled!". I don't remember the last time some one was called a bad parent because their child was visually impaired or told to cure their spina-bifida with a good clout.

Worker at theme park saying that he could only allow a disabled person and one other individual on to ride through the exit to a group of 4 (one of whom with ASD/anxiety and another in wheelchair) and expected person with anxiety to get in crowded queue whilst allowing wheelchair user on.

DH's aunt (who knows I have ASD) saying it was extra good to see BIL at family party when he had recently had surgery. Seeing me was only good despite awkwardness with social situations.

amicissimma Wed 02-Jan-13 18:59:01

oops, emit, not omit!

McNewPants2013 Wed 02-Jan-13 19:06:23

Yanbu and thanks for the disabled go website.

My son has asd and often feel like my parenting is judged it sad that on MN it seems there is understanding of hidden disabilities

Crawling Wed 02-Jan-13 19:10:21

No bunfagfreddie not even all my family know I have bipolar type 1/scizoaffective my mum or my partner generally make excuses for me not to see people when I'm ill (at my request) as I just can't deal with stigma on top of my mi so they help me keep it hidden.

some family members cotton on but people generally find a excuse for my behaviour rather than think about it being that mental illness thing which happens to other people. I wish I had the strength to tell people and maybe reduce stigma but I don't I imagine its the same for most mental illness.

TheNebulousBoojum Wed 02-Jan-13 19:10:37

It's getting better all the time Puddlejumper, as I said, my DS is now 18 and we've seen the changes as the years roll by. It's much slower amongst the general population and also less in places devoted to quick turnovers and profit who often have no training in place and clear rules for staff on how quickly activities and events should go.
I've always been open about DS's diagnosis, been clear and unapologetic about what he needs and thanked people and establishments for any and all efforts they've made to assist him, especially if I haven't had to ask.

FairyJen Wed 02-Jan-13 19:13:47

Well put op I have mobility issues and was born deaf so been dealing with that stigma for years!!

BunFagFreddie Wed 02-Jan-13 19:17:28

Crawling, I have bipolar with psychotic features and I have only told a few people. However, my dad has bipolar too. When I visited my parents, it turned out that a good friend of theirs has bipolar and my parents had told her all about me!shock Actually, it was very refreshing to be able to talk about it with my family and the couple my parents are friends with. It was just like discussing your bad back! DS is aware of my bipolar and I was advised by my CPN to be open about it with him.

I have a good friend who has suffered from episodes of clinical depression and we are very open with each other. I don't tell other people though.

Employment is the main area where attitudes need to change, but that is the same with any disability.

Crawling Wed 02-Jan-13 19:26:51

funbagfreddie it must of been nice talking about it my dc are not old enough yet all my oldest just knows mummy takes tablets because mummy has difficulty sleeping when my dc are older I will tell them.

Good that you have your parents support though and employment definetly needs to change but sometimes it feels like we live in the dark ages as far as mental illness goes.

PandaOnAPushBike Wed 02-Jan-13 19:27:23

YANBU

I once got ripped to shreds on this forum for being offensive to autistic people by referring to an autistic person as an 'autistic person' instead of 'person with autism' despite pointing out that the person I was referrring to was me and that I have autism and prefer 'autistic person' as 'person with autism' implies I should be ashamed of who I am. A couple of other autistic people said they felt the same as me but it did nothing to stop the frothers.

FolkElf Wed 02-Jan-13 19:28:00

I agree. My daughter wears two hearing aids and has mild/moderate loss.

I hadn't really realised how many people are not 'deaf aware'. She's a child so she doesn't really get the speaking slowly and like she's stupid. But people mumble, don't face her, speak too quietly, don't get her attention before talking to her and when I take her anywhere I often find that I have to repeat what is said to her because she hasn't heard people.

I suppose I ought to just tell people how to speak to her but she only got diagnosed in the summer and I've been repeating other people's questions etc for her since she was little.

I even got told by someone that allowing her to wear hearing aids would damage her hearing further because it would cause her ears to become lazy!!

PandaOnAPushBike Wed 02-Jan-13 19:32:06

I once explained to someone the difficulties I have because of my autism. They told me that this was an attitude I needed to get over. This was from a healthcare professional.

amicissimma Wed 02-Jan-13 19:34:06

FolkElf, my ENT consultant, who really should know better, sits with his back to the window. I've told him off explained why the other way round would be better, but he still does it!

EndOfTheRoad2011 Wed 02-Jan-13 19:48:53

Why has everyone ignored the post about not turning visible/invisible disabilities into a us and them?

My dd is in a wheelchair and we face many of the same problems. What you all need to remember is some people in wheelchairs have hidden disabilities too!

That little girl in an electric wheelchair who has a smile on her face and looks normal is really dying in front of your eyes. Her muscles are wasting away, first her legs, then her arms and eventually her neck control. Soon she won't be able to chew or swallow and eventually her lungs muscles will waste away so she won't be able to breathe on her own.... Yes she is in a wheelchair and yes she gets a few advantages in life but considering her life is limited I think she is entitled to them!

We fight every day for our daughters rights even though she may not be here to appreciate them! I suggest rather than comparing to "wheelchair" users and how much they get join forces with your charity support and fight! So many of you here are highlighting problems and concerns why not get together and become one voice...the voice of your children....

TheNebulousBoojum Wed 02-Jan-13 19:50:07

Panda, DS and I talk about him being an Aspie, a term he chooses to use.
Like you, I wouldn't use the term randomly to label other people with Aspergers, but I also had to defend us using it, and his reasons, against a fairly vigorous group of objectors.

FolkElf Wed 02-Jan-13 19:50:12

Yeah, he really should know better, amicissimma!

That's unbelieveable really.

DrCoconut Wed 02-Jan-13 19:55:10

DS1 is in the final stages of assessment for ASD. They are working on where he sits on the spectrum having estalished that he is on it. I get people tell me I over indulge him, if he was their son he would have to eat gravy/talk to strangers/organise his own school things and they would just make him. I've had older people say there was no such thing as Aspergers (a possible diagnosis for him at the moment) in their day, just disobedient children who were cured with a clip round the ear. Etc etc. When I ask them if they would just make a child in a wheelchair get up and walk they look at me as though I'm mad. I don't make excuses for DS, he really can't help the way he is. He has sat and cried because he knows he is different and can't stop "being weird". It's taken me years to get to this point where he is even being investigated due to attitudes towards hidden disabilities.

BunFagFreddie Wed 02-Jan-13 19:55:58

Crawling, my DS is 14 now. I'm also a lot more stable thanks to talking therapies and medication. I don't see why mental illness is still taboo. Also, what people don't think about is the fact that mental illnesses kill. People with bipolar commit suicide, mentally ill people can neglect themselves and develop health problems that can be become serious. Then there's people with eating disorders who might punish their bodies until they just give up on them.

EndOfTheRoad2011, I don't think of it as an us and them situation at all. I don't think many of us do.

Peggotty Wed 02-Jan-13 19:57:50

To mrshoarder asking about speaking slowly to the hearing impaired - no, it's not necessary to talk slowly, only clearly. I'm hearing impaired and have come to the conclusion that I spend far too much time and effort turning myself inside out to make other people not notice/be uncomfortable about the fact my hearing is bad. I pretend to hear things and guess what people have said. All because I don't want to irritate people by asking them to repeat things! Ridiculous me!!!

EndOfTheRoad2011 Wed 02-Jan-13 20:04:19

I hope not Bunfagfreddie ..... All disabilities need to be understood and the best people to get the message out are those that are experiencing it .... X

44SoStartingOver Wed 02-Jan-13 20:22:53

I work in a school with a high level of SEN amongst pupils. One thing it has taught me, is that students with the same diagnosis eg being somewhere on the autisitic specturm have very different needs. One I know is OK, so long as he knows exactly what to expect - if there is a change, he needs to know in advance, another cannot deal with any variation in timetable.

So, how can NT general public best assist? Unless I am told what suits a person best, I cannot really accommodate in a specific way? However, that same persons ailment might be the very thing that prevents him or her from communicating his or her reasonable adjustment?

I understand that no-one should be obliged to reveal his or her personal circumstances every time they buy a loaf of bread, but without some knowledge, all I can try to be is as as tolerant and patient as possible.

Which is what I try to be, using my experience of individuals to guide me.

I am really not trying ot be obstructive or difficult, but I know I consciously try to be as helpful as possible without being patronising or a pita.

Is there a better approach I should adopt?

NB whilst queuing at a theme park last week, one of my dc said to dh to be kind as not all disabilities are visible, so I think I must be doing something right. Not to congratulate myself, but to emphasise that I do try to do the right thing.

FolkElf Wed 02-Jan-13 20:34:39

peggotty my daughter's 6 and I've already seen her nodding and smiling in that way she does to be polite but when she hasn't got a clue what's being said to her. I wonder how much of her life she's going to spend doing that for the same reason as you. sad

mrshoarder a lot of hearing impaired people rely on lipreading to support communication even when they use hearing aids. Speaking slowly distorts your lip patterns and can make it harder to read them.

PenelopePipPop Wed 02-Jan-13 20:36:23

I completely agree with Christmasisacumenin and Endoftheroad. There isn't a them and us issue. Not between hidden and visible disabilities or between disabled and non-disabled people. We are all of us born wholly dependent on others, we go through more or less dependent on others for support, and we'll die dependent on others. The more adaptable we are the more responsibility we bear to adapt ourselves to the needs of those around us. But we will all experience points in our lives, for some of us they will be lifelong, for others more temporary where adaptation is difficult and we need others to accommodate us for a while.

If we could all try and think of ourselves as people who owed a duty of accommodation to everyone we meet whether or not we could readily identify their needs all of our lives would be easier.

SparklingSnow Wed 02-Jan-13 20:43:10

My DD has ASD and I've constantly being told by people, "'she looks fine to me, she doesn't look disabled at all". Even a GP turned round and told me that it didn't look like autism to her, only bad behaviour. I've refused to see that GP since then due to her ignorance.

There does seem to be so much ignorance about regarding ASD and other hidden disabilities. With ASD, people seem to expect someone to be unable to communicate at all or someone with Rainman maths skills. My DD seems to be in the middle of the spectrum and she does need a lot of help and support.

When she was younger, we used to get stared at constantly while out due to my DD outbursts. And people would think it was okay for them to make nasty little comments about us. I look a lot younger than I am so I think that would have influenced it as well.

Due to the fact she's older now, I'm used to it and we do go about places. However, it really did bother me previously. I used to avoid going to places as I found all the comments and stares too much. Now I think, I'm not going to stop us living our life due to idiots being ignorant.

There definitely needs to be a lot more awareness out there about disabilities.

SparklingSnow Wed 02-Jan-13 20:43:54

I feel a bit better now I've got all that off my chest!

lifeintheolddogyet Wed 02-Jan-13 20:44:36

I agree. My DS2 has severe language impairment. He's also profoundly deaf in his left hear but because of the nature of his deafness he doesn't wear a hearing aid. What he can hear he often can't understand. What he does want to communicate he often can't.

We get, 'Oh he can't be that deaf as he doesn't wear a hearing aid.'

He's such a happy little boy and so confident he doesn't see how some people react to him. I'm so scared that as he gets older he'll realise people don't understand him and he'll withdraw. sad

whathasthecatdonenow Wed 02-Jan-13 20:46:41

People with visible disabilities are treated awfully too, so we should be careful not to turn on each other.

My DNiece looks very well on the surface. However as a result of her brain tumour there are days when she can't walk, has no sense of when she needs the toilet so wets herself, can't follow basic commands, has no sense of danger or boundaries. She gets treated badly whether she is in her SN pushchair or not. There are days when I'd like to part her hair and show people the massive scar on the back of her head - how do they think they'd cope with a multitude of competing demands on their attention when their brain has been battered about in their skull?

My Dad was a double amputee in a wheelchair. People talked to him like he was stupid, or did things like passing the change to whoever he was with when he paid for something in a shop.

Disability awareness should be something that everyone works to improve for all people with disabilities, hidden or not.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now