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.

AmberLeaf Thu 03-Jan-13 10:36:04

it should never be us divided, we the sn community should all stick together

Hear hear.

Peachy Thu 03-Jan-13 10:46:32

Diivisive posts weaken everyone in the disability community.

i too have AS; I have 4 sons, 2 of whom has a diagnosis of ASD and one who is beinga ssessed (we already know he hs a gene out of place and we are awaiting news on his statement- he is disabled, it's just the cause we are looking for IYSWIM).

I know how environments and set ups can be problematic to someone with a hidden disability. I understand about hidden disabilities and toilets (Dh had very severe IBS that made him urge incontinent a few years back due to some meds he had to take).

I also know though that my friend can;t access my house in her wheelchair, whilst we can skip over the kerb and step (kerb is too close to door, acts like a barrier). I know we can;t shop in busy city centres but someone in a wheelchair can;t shop at the local spar (because the owner stacks things in the middle of the aisles) and it would be a massive hazard to anyone with a VI.

Mostly though we share the same issues- worry about the future, an overload of forms and admin, constant fights to get basic services and a general sense of how on earth did I end up here.

I get a lot of support and indeed entertainment from people like threesocks despite our children having very different diagnoses. I'd hate any kind of in fighting to damage the caring / disability community because it is so wonderfully supportive.

Bonkerz Thu 03-Jan-13 10:53:44

The youth group is actually a huge centre purpose built for young people. It operates from 6-9 week nights. Apparently DS is welcome To go to the disabled group once a month but without a carer! He has a 32 hour statement and is in a specialist school. No staff at the centre are trained in autism so I would never send DS without a qualified carer! I am taking the Center to task on this. Am currently compiling a list of acts and policies to support my argument. DS wants to hang out with his 'normal' mates he just needs an adult incase I meltdown or crisis. I'm not asking hall to pay I'm happy to but what makes matters worse is the md is a family member on DHs side so the in laws think I'm a trouble maker!!!!!!!

Peachy Thu 03-Jan-13 10:56:32

Fuzz a lot of what you have written rings very true for me too, an awful lot. My ASD was picked up by a lecturer at university who specialises in diagnosing complex cases of ASD, I am still awaiting a formal dx (and will have to wait another 18 months minimum yet) but it's with her so I think of it as a mere formality. I think I was lucky; my Mum also clearly has AS (and she knows it), ass do my Grandad, late Uncle, Aunt and one cousin (although I have possibly the worlds largest family of only a small % overall- dad is one of 16, other Grandad one of 11!). they have found an errant gene in ds4 and we are waiting to see if it is shared but we were due results in September and are still waiting for them.

Bonkerz ask them how they can justify that decision under the disability protection legislation (Equality Act). I'd doubt very much that they can.

I agree hugely about education: the best thing In ever did when it came to being a Carer was to have worked in the sector, DH hadn't done anything like that and was much more out of his comfort zone than I was, for him it was as if it was stepping into another world with different names and abbreviations and all sorts. And now having done formal study in ASD I can work with most people involved in my boy's care.

Not surprised about the comments by LEA's; I am currently saving up examples of our link workers, including 'children only deserve a statement if they are in a special school' and 'if you try and look around comps for your ds3 now you will be laughed at, do not go until December 2013' (the places at SN schools for the current year 5 group, of which ds3 is one, are allocated in November...). Should either ds4's statement be refused (not in a Sn school at present) or ds3's Sn comp place (in SN school atm but LEa want to put him somewhere unsuitable, ms and without help) then the comments will be used in a formal complaint

threesocksmorgan Thu 03-Jan-13 11:59:45

Bonkerz That is bad

HollaAtMeSanta Thu 03-Jan-13 12:10:49

The thing is...

... for every person that really does have some sort of MH condition that makes it unbearable for them to queue at a theme park, there would be millions of pisstakers who claim the same in order to queue-jump.

... for every child with ASD who can't help kicking off in public in a way that looks like a standard temper tantrum (as opposed to AS-specific/stimming behaviours), there are a hundred spoilt brats who can help it, and should be disciplined.

... for every person with social anxiety, there are many others who are moody/wrapped up in other things/just can't be arsed to show up to a social event (this example in particular is a grey area, I would say).

Personally, I would give children the benefit of the doubt, but an adult who told me they needed to push in front of me in a queue due to anxiety issues would get very short shrift. Maybe we should have some kind of "invisible disability" ID card scheme (could be similar to blue badges for parking), so that people with genuine needs can prove that their issues are genuine.

jamdonut Thu 03-Jan-13 12:17:29

CloudsAndTrees in the abscence of any other reply, the reason why it in snot good to sit with a back to the window especially in a small consulting room, is because it puts you in sillouhete and you can't see the person's face well enough to lip read.
I am partially hearing, and wear a hearing aid. I have otosclerosis, and will gradually get deafer. A stapedectomy operation was attempted to put things right but the bones in my ear had overgrown too much for it to be done. A lot of people who know me/work with me,don't know that I have a hearing aid. I don't want people to talk to me like I'm stupid, so I only tell trusted people.

FolkElf Thu 03-Jan-13 12:23:49

jamdonut I hope you don't mind me asking this, I am very early on in the journey with my DD and she's only been aided since September. She has conductive loss and it's been suggested that the most likely cause is fusing or deformity of the bones in her ear and that if this is the case her hearing loss will be progressive.

Does this sound similar to what you have? The audiologist said that an operation can be done to seperate the bones but not until she's much older and until then it will get worse.

She has a consultant appointment coming up and I have been lead to believe that he may recommend a scan to determine the cause.

CloudsAndTrees Thu 03-Jan-13 12:29:34

Thank you for the answers to my question, there were a few other responses I have just seen. smile

It makes perfect sense now that I have had the obvious explained!

Are there any other situations that make it harder to lip read? It would be good to know so I can bear it in mind.

Peachy Thu 03-Jan-13 12:39:57

Hola someone at a theme part who needed help that way would have a Carer with them. Also if they needed it they would use the schemes designed which you have to prove a need for and would therefore have a special card or badge.

But the social anxiety suggestion with a card is rot: I often miss things for that reason, or did before I was given useful meds- would you be expecting someone with that to show up with a card and say I can't show up because?.... hardly likely! And many with an ASD in particular find phones awful to use ( a big issue for me).

I don;t integrate much at school and it's partly my AS and partly due to incidents with other parents who don;t like kids with disabilities in 'their' school. I don;t expect people to make adaptations for that (although if someone starts a chat it makes my day, just because I can't start a chat doesn't mean i don't want one), but last week of term I was referred to as a Leper and that was a bit much! If you an;t say something nice and all that. If my son kicks of you don't have to know he has ASD, just that it's none of your business and comments are not wanted.

Also you will find many disabled people don;t want to have to carry cards, especially in this environment we have atm, too much like wearing a star badge for many people's comfort.

Personally if someone say they have a disability i'd rather make adaptations for them and be wrong than the reverse. how often does it happen anyway? virtually never to me.

Peachy Thu 03-Jan-13 12:44:47

'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.'

I think patience and tolerance is all anyone can give. We can;t all be experts on all disabilities- I am on autism I guess, but not anything else- it's just about mucking in and all trying to be generally kind.

FolkElf Thu 03-Jan-13 12:48:36

Clouds covering your mouth when you're talking; speaking with your mouth full; speaking slowly; mumbling; not facing the person you are talking to directly can all make it difficult to lipread.

The sort of thing that is obvious once you know, but until then, isn't. smile

HollaAtMeSanta Thu 03-Jan-13 12:58:25

Peachy, I was thinking of the OP's grievances... e.g. 1 went to theme park, wanted to skip queue due to anxiety, wasn't allowed (so presumably did not have a carer in tow), e.g. 2 managed to attend a party but was then miffed not to have more of a fuss made of her by her aunt given the effort it had taken for her to be there... obviously you wouldn't march into a party, present a card to prove you couldn't cope with attending and then stomp off home again hmm but if you had a card, you might casually say to the host when seeing them on their own "oh I've been approved for an invisible disability ID card, look" and that might make them more tolerant/understanding of you doing things like bailing on social events at the last minute.

It's all very well saying you wouldn't want to carry a card, but you could say the same about blue parking badges. You aren't obliged to use one, but if you choose not to, you can't park in the special spaces.

CloudsAndTrees Thu 03-Jan-13 13:04:24

Thank you Folk. Thankfully, even to me, those things were obvious. smile

I have to give my husband a dig occasionally when we chat to a lady we know who lip reads at a particular event we always see her at. It's annoying when he talks over me at the best of times, but he forgets that no one can be expected to lip read two people at the same time!

SparklingSnow Thu 03-Jan-13 13:06:13

I feel that it shouldn't be up to the person who has the disability to provide proof to people to make them more tolerant.

I think people should just have some understanding that diabilities come in many different forms and they should have respect for those who have one.

Disability can affect anyone. I think more people need to have some understanding about that.

Catchingmockingbirds Thu 03-Jan-13 13:16:12

Yabu. Dsd is severely disabled, is in a wheelchair, has no control over her motor functions and can only communicate through a computer. DS has AS, hypermobility, hypermobility and a degree of LD but seems NT to those who don't know him well. Both struggle in very different ways.

No disability should be overlooked.

FolkElf Thu 03-Jan-13 13:16:38

CloudsandTrees blush sorry for stating the obvious!! smile

CloudsAndTrees Thu 03-Jan-13 13:20:12

Don't be sorry Folk, I'm sure it will be helpful to people. Especially people like my DH!

bubby64 Thu 03-Jan-13 13:32:15

YADNBU - Mum of a preteen with chronic benign hypermobility and only one lung here, yes, he can walk, but not for long periods, so sometimes uses a wheelchair. Most of the time tho, he prefers to walk, even if it be at his own pace and with frequent rests, as he feels it is better for him. DH has HF AS, and, up until his latest job he was always having problems mostly with everyday relationships with work colleagues, at least now he has an official diagnosis, and also comes under the terms of the Disability Discrimination Act.

DeWe Thu 03-Jan-13 13:46:36

I think physical disabilities have some things easier.
They have some things harder.

Dd2 has a physical disability. She's missing her hand. It is pretty much always visible, she can never get away from it. It's often the first thing people say to her, before they ask her name etc. "How did you get that?" gets very trying, and that's one of the better things said.
It's also very common for people, even strangers, to say nasty things. I know people with the same disability who have been hounded over their job, assumptions are made that they can't do it properly. Think of the problem Cerrie Bernell had on CBeeBies when she first came, that's very public. People are much nastier in private.

However she also gets the sympathy vote. I've noticed if there's a competition where she has to be with the entry (eg fancy dress) with strangers, she has a much higher chance of winning. We got DLA without a fight, whereas a friend who has a severely autistic child had to fight for any, and she has so much more need of help.

Catchingmockingbirds Thu 03-Jan-13 13:46:53

That should be AS, hypermobility, hypotonia and LD.

BeyondStuffedWithXmassyGoodies Thu 03-Jan-13 15:13:27

With the "invisible disability" card, did such a thing not kind of exist back in the days when anyone who was disabled was "Registered" disabled? (This could be untrue, I'm new to the whole thing blush )

From what I understand, it was the equal ops act that stopped this again, this could well be bullshit, feel free to correct me! because people with disabilities didnt want to be registered disabled?? So then they (well, we?) only "count" as disabled if claiming DLA or mobility help?

BeyondStuffedWithXmassyGoodies Thu 03-Jan-13 15:16:05

way overuse of quotation marks by me

BeyondStuffedWithXmassyGoodies Thu 03-Jan-13 15:22:14

Ahh... A quick google has told me that my local council offers registration cards to anyone classed as disabled...
link here

Wonder if this is common?

Marne Thu 03-Jan-13 18:23:19

Sorry i have not read the whole thread (because i am lazy), as some of you know both of my dd's are on the spectrum, i have to say that most of the time people are quite understanding. We have got the odd look when we have used a disabled toilet, people asume my dd's should be able to use the other toilets as they are not physicly disabled, they dont know that my children freak out when someone uses the hand dryer and cant cope with lots of people in a echoey space.

I do think people are a lot more understanding then they were 20 years ago though, most people know what autism is (though sadly people still streo-type and asume all people with asd are the same). I'm sure in 20 years time things will be even better and maybe more places will be ASD friendly, until then sadly there are places which we have to avoid (as the dd's cant cope) and there are places where i make the dd's go as they need to learn to cope the best they can to get through life (they need to be able to go to the shops, banks, doctors, opticians etc.. but we no longer go to theme parks and rarely eat out).

If someone goes into a cafe in a wheel chair people will often move out of the way and make space for the wheel chair user, if a person with ASD walks into a cafe no one will turn background music off ,turn lights off or find you a quiet spot but then if no one can see the disability you cant expect them too (as they don't know and you cant expect them to know unless you tell them). Sadly thats the way it is and probably always will be unless you are open and tell everyone you meet (which you wouldn't realy want to do). Also what one person with ASD may find upsetting another might find relaxing, my dd2 hates loud noises but i know other children with ASD who like loud noises and making lots of noise, so it would be hard to addapt everything to suit everyone sad.

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