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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.

Sunnywithshowers Wed 02-Jan-13 17:07:19

YANBU. My DH has MS and his condition fluctuates.

I think that there should be more education about types of disability.

Vagaceratops Wed 02-Jan-13 17:08:22

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.

We have been to many tourist attractions that have catered for DS2 (who has ASD and LD) - exit passes are common place at most theme parks for example.

yfuwchhapus Wed 02-Jan-13 17:14:15

I am so with you on this Proud! My DD7 has ASD and we are constantly being told "she looks normal" I knew at 4 days old that she had ASD but after raising my concerns with midwife and GP I was made to feel like a crap Mum!! Even at 9 months when she could recognise all her letters and numbers up to 20 I raised my concerns and showing what she was able to do to the GP and was told that I needed to stretch her!! Due to all this we had a late diagnosis....luckily we had started early intervation at home and only then she thrived. I just fear if some 'professionals' are not understanding, what hope have we got for a lot of others!? Not all people....just some narrow minded individuals!

marjproops Wed 02-Jan-13 17:14:22

YA soooooooooooooooooooooooooooooo NBU.

yes yes yes yes yes, soooooooooooo agree with you OP.

DC has physical probs but masses of mental probs, cant expect people to actually 'see' them, a wheelchair/downs/ etc are visual, but hidden ones, no.

And yes, my DCs been refferred to being badly behaved/badly brought up etc etc etc, and I have to carry around cards to show people about autism/tourettes etc even tho i feel like screaming at people not to stare and judge.

cant take her anywhere 'touristy' during school hols etc, thankfully shes homeschooled now so i can take her to places when its quieter and less people about.

BeyondStuffedWithXmassyGoodies Wed 02-Jan-13 17:14:41

As someone only recently diagnosed with arthritis, I want to say that I do agree with you, and have had some bad experiences in only the last few months. But I want to make it very clear to people who may take this wrongly that I am not "jealous" of people with visible problems, just pissed off with the "normal" people who think there is nothing wrong with me. IYSWIM?

ArthurPewty Wed 02-Jan-13 17:16:11

Message withdrawn at poster's request.

NolittleBuddahsorTigerMomshere Wed 02-Jan-13 17:28:35

YANBU, there are schemes and such at attractions but they are not well publicized. Have you heard of Disabledgo? I use a wheelchair, but this is useful when going out with friends who have sensory and learning issues and epilepsy

scissy Wed 02-Jan-13 17:33:04

Yep - I look and behave normally 99% of the time (thanks to the wonders of meds). Unfortunately this can lead to issues, especially with some bus drivers "why do you have a pass?" - I just tend to ignore them or wait for the next bus, I don't think they'd want to see/deal with what happens on the 1% when medication doesn't work!

A friend of mine is severely partially sighted and registered blind/disabled. She's considering getting a white stick because she's fed up of rude comments from strangers when she has issues getting around due to not being able to see properly. She went to a festival which advertised discounts for "disabled people". When she asked for said discount they said "that's for people in wheelchairs". Her comment - "I don't mind that it's for people in wheelchairs, but I'd be nice if they'd at least make it explicit".

NolittleBuddahsorTigerMomshere Wed 02-Jan-13 17:33:55

Linky here, if anyone wants:

elliejjtiny Wed 02-Jan-13 17:37:18

I have a child with a physical disability and IME there is more help and support for children who have learning disabilities or ASD. But I don't know if it's a grass is always greener thing.

I find people do judge your parenting with a child in a wheelchair too, I quite often get told DS must be lazy, especially if they see him walking a short distance one day and in his chair the next. Also people expect him to behave like a saint when he is in his wheelchair rather than like a normal child who whinges when I say no sweets just like any other.

And it seems like every opportunity for disabled children to socialise together does not include DS because he doesn't have learning disabilities or ASD. DS2 would love to get together with other children who are wheelchair users and who understand what he's going through but I hardly know anyone locally and professionals seem to actively discourage it anyway as it's not "inclusive".

However I do see both sides and I appreciate your point of view as DH is an adult with AS and there is no support for him whatsoever.

My Ds was born at 28 weeks, and, as a result, he has health problems which aren't always obvious.
For starters he has Chronic Lung disease, and Restrictive Airway Syndrome, and asthma as well. He has all sorts of allergies- these get a hmm look from some people who feel we are being ott. He is severely allergic to peas, nuts (and their oils) every type of fish there is, and egg yolks when not cooked. He has intolerance to wheat as well. However, if we take him with us and dd for a meal, and ask about the food available, you often get withering looks. One silly woman in a cafe once said I was "daft" as "who'd ever heard of a kid who can't eat fish fingers?"

Of course, the lung and breathing issues are the worst for him especially. He cannot be as active as some children when he has a bad period. The nursery he just left, well, they expected him to go outdoors in damp weather, and it took months to remind them that damp will irritate him. I even had a paramedic tell me off for calling him an ambulance (we had no car at the time, it was 10pm at night) as he was having an asthma attack and wasn't responding to his inhalers as he "didn't look that bad" (this was after he'd been on a nebuliser).

The whole change to DLA scares me so much. We did used to receive the "Care" part- his Restrictive Airway illness is worse at night as he snuggles down flat, no amount of propping him up works and as a result we both end up shattered throughout Winter especially. This was stopped last year and, on phoning them at the end of my tether (appeal took between June and January) I was told "all parent's have to look after their children, most don't expect to be paid for it". Ds is very different to dd, I didn't claim as some deadbeat who was interested in the money, more as we have been around the country to different consultants (got us nowhere). In the end they allowed us motability, but I dare say that will be clawed back as soon as they see fit. Having a car (which we couldn't afford before) has helped alot- his attendance this time last year was 51%, its now 73.8%, so not having to walk everywhere in all kinds of weather has helped. But now the last consultant we saw has signed him back to our GP, as he couldn't offer any further help bar what we are already doing (inhalers, steroids when necessary and daily doses of medication to ward off allergy attacks), this will be used against him by the DWP.

I hate the government's and general consensus that as they are our dcs, we should just get on with it. I hate that unless a child has a visible disability you are seen as a bit neurotic for voicing concerns.

As I always say, if ds was in a wheelchair, no one would say anything untoward.

FryOneFatManic Wed 02-Jan-13 17:41:29

And don't forget those with hearing disabilities. I've lost count of the times when people have repeated something I've missed in a s l o w a n d e x a g g e r a t e d way because I've politely asked them to repeat what they said. And then you're treated as thick because you didn't get it the first time.

Sarraburd Wed 02-Jan-13 17:43:05

Here here.

DS2 ASD - not severely, but enough to make a lot of everyday things difficult and it's unbelievable the attitudes one gets sometimes ("why are you taking him to the park if he has autism?" etc); have great empathy for those for whom I know it is alot worse.

notactuallyme Wed 02-Jan-13 17:43:36

ellie where are you? We have wheelchair sports near us, for children?

firawla Wed 02-Jan-13 17:51:25

fellowship that is awful, cant believe dla said that to you!!! and all the other comments

OP i get what u mean i have a ds with asd and it just doesnt seem to click with family members that he does have sn and that it is a lifelong thing. people's attitudes are very annoying at times as they seem to think he will snap out of it or just grow out of it and there does tend to be a subtext of 'its your fault' or 'making a fuss about nothing' - not nice to have to think of the attitudes he could come across when he is older

sannaville Wed 02-Jan-13 17:52:47

Yadnbu! I have two dds. Dd1 has adhd and has actually had me in tears today her behaviour has been so difficult and dd2 is under assessment for hfa. Both have very very difficult personalities . Dd1 appears charming at times but I bear the brunt of her very harsh behaviour and at present I'm feeling close to a breakdown!
No one understands!!! The only place I've ever been that was totally understanding and accomodating no questions asked was Disneyland Paris

Sirzy Wed 02-Jan-13 18:01:05

Yanbu. Ds is 'only' asthmatic (although quite badly) and I get frustrated enough, must be infinitely worse for those with autistic children.

One thing that annoys me (but I can understand why it's done) is that activities insist of being paid for a whole term. Ds loves swimming but lessons aren't an option as I can't justify paying for a block he won't he able to use all of. We left tumble tots for the same reason

firawla He's 4 now, so we've had years of it. He's only just had allergy tests despite me begging for confirmation as my GP felt I was exaggerating the severity (he looks like someone has punched him and has two swollen shut eyes after attacks). Of course, now he has had them the hospital are interested and want him off school for dietician appointments. Not bloody likely considering we've done it all ourselves and I fail to see the point of another person telling me how to feed my ds.

Sorry! I get really peed off by it!

sannaville Wed 02-Jan-13 18:05:46

Sirzy I agree about paying for activities in blocks. Dd2 loves dancing AMD I'd love to try her at a class but she doesn't like other kids in her space so it could be an issue and I don't want to pay for a whole term to only do half a lesson!

Glitterknickaz Wed 02-Jan-13 18:05:54

YANBU. Three kids with ASD here.
Thing is controlling crowds in public places for eg would be very tricky, not sure what the solution would be.

Shame those that lost jobs couldn't seek justice under the equalities act, but I understand that the nature of the ASD may make that in itself harder.

Glitterknickaz Wed 02-Jan-13 18:07:50

I agree with the hearing impairment too. I wear two hearing aids and that apparently makes me stupid s o. Y o u. H a v e. t o t a l k. S l o w l y.

Sirzy Wed 02-Jan-13 18:08:49

Sanna - can you get a free trial session somewhere? Or is her response likely to change week on week anyway?

LadyMaryChristmas Wed 02-Jan-13 18:09:40

Ds is hypermobile and has trouble walking/standing for longer than a few minutes as his ankles are weak and cause pain. The bus we catch to school is always rammed and there's often no where for him to sit because people who look healthy have taken them all. I have to stand next to him and watch as the colour drains from his face. sad I've asked people to move a few times so that he can sit down, it's not the greatest feeling.

ChristmasIsAcumenin Wed 02-Jan-13 18:13:44

Hey, so, I don't quite know how to say this to you without it being a gigantic fight, which is not what I want at all so please hear this in the tone it is intended: one of respectful disagreement.

You don't need to compete with people in wheelchairs. You can fight for rights without trampling on other disabled people or making up "facts" about them (like "I doubt that colleagues would have stood by and let someone with a physical disability be treated in this way")

You don't know that. In fact I doubt your assertion. I think your post is mistaken in its assumptions and damaging in its implications. Please rethink this line of argument.

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