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:

www.disabledgo.com/

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.

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.

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!

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.

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.

Crawling Wed 02-Jan-13 18:14:08

defy agree I have a severely autistic child and I'm sick of people giving me funny looks or saying stupid things one comment was someone I knew from school who said to dd in a haughty voice "why are you making them stupid noises you are not a baby" I was so upset I was crying for ages. Its bad enough when I attend a small group setting and have to leave as dd is to distressed without helpful comments said in a superior voice about giving smacks, taking her out more or being stricter.

sannaville Wed 02-Jan-13 18:16:26

Sirzy its probably likely to change week on week depending on how much sleep she's had and a whole load of other things. Will keep looking for a pay on the door one

MsNobodyAgain Wed 02-Jan-13 18:16:32

It's not a hidden disability. It's just less obvious.

sannaville Wed 02-Jan-13 18:18:20

My two dds appear very NT but can exhibit very challenging behaviour so I get the typical 'bad parent'looks!

SilverAndSparklyKat Wed 02-Jan-13 18:22:24

Yup. YANBU.
Some people are really understanding of my never ending hospital appointments, other people seem to think I enjoy spending half my waking hours at outpatients. It's not time off for a party people, if I don't go I'll die. Capisce?

BunFagFreddie Wed 02-Jan-13 18:22:59

Mental illness is another hidden disability. There's also the stigma of having a mental illness. With many serious mental health conditions they are variable. You might only see that person on a good day, so it's easy to think that they are just being silly and that they could pull themselves together if the really wanted to.

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.

How could a tourist attraction better accommodate those people?

Crawling Wed 02-Jan-13 18:28:09

well said bunfagfreddie 80% percent of the time I'm the most together person you meet 20% of the time I'm psychotic and with suicidal or manic mood disorder. people who don't know me well would never guess I live with a major mental illness.

TheNebulousBoojum Wed 02-Jan-13 18:28:20

'It's not a hidden disability. It's just less obvious.'

confused Care to elaborate, MsNobodyAgain?
My DS has a veneer of NT skills and learnt behaviours that conceal his AS to most observers. I'd call that a hidden disability

Ineedmorepatience Wed 02-Jan-13 18:35:14

I agree nebulous, my Dd3's ASD is definitely invisible most of the time because she struggles and works really hard to keep it that way.

Sometimes though something will happen that she cant cope with and then it all come flooding out.

I too get a bit fed up with the judgy people assuming that I have poor parenting skills when in fact they know nothing about me or Dd3

TheNebulousBoojum Wed 02-Jan-13 18:35:57

'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.

How could a tourist attraction better accommodate those people?'

Some places do very well, TJPJ. I've been looking out for AS-friendly places for around 15 years, and certainly in many places they have upped their game over the years. Depends on the place and the child. I know from second-hand reports that many theme parks have a lot of support in place, but my DS hates them so we don't go.
Museums, galleries, historic buildings, all sorts of places when I've said to a member of staff 'he has Asperger's' to explain odd behaviour, they have shown increasing levels of tolerance and reasonable accommodation over the years.
Largely I feel becaiuse parents of SN children have become bolshier more confident and less apologetic and so the awareness of children being on the spectrum has increased.
So if the attractions keep listening, the opportunities will continue to grow.

MsNobodyAgain Wed 02-Jan-13 18:37:13

And using a wheelchair is a problem in terms of space and fire safety issues. That is why they are more 'accommodated' if that is the right term to use than people with ASD or anxiety issues.

I am a mother of 2 DSs with special needs. They have learning difficulties. They are both partially sighted. One has ASD. One has suspected Aspergers. One had leukaemia and was in a wheelchair for quite a while. I'm only saying this to explain I've seen both sides of the coin.

MsNobodyAgain Wed 02-Jan-13 18:40:15

TheNebulous see above.

Amytheflag Wed 02-Jan-13 18:40:33

I don't know with this. I think its a little unreasonable to expect people in everyday life to understand a disability if they can't see it and make an immediate opinion of it (like a wheelchair) and know nothing about it previously. I say this as someone with mental health problems who has to explain to every bloody person why I can't do such and such because they dont accept the short version and had a health visitor try and "fix" me by patronising me completely. As annoying and frustrating as this is all the time, I still get that the only knowledge the average person has of my disorder tends to be TV that makes a joke of it so I can't get too angry when they don't respect my issues without the in depth explanation.

At the same time though, I can understand completely your point of view. I just think its unreasonable to expect everyone these days to understand and adapt to every disability when they are seeing it for the first time.

Thanks Nebulous. I can see how some accommodations could be made if staff are more alert and aware, but I'm still uncertain how a sensitivity to crowds or a need for routine can be catered for. Sorry if I'm just being thick! blush

OxyMoron Wed 02-Jan-13 18:45:11

Yup, DD has a physical but hidden disability, no learning disabilities, and I feel that leaves her kind of nowhere. She looks like a healthy child, but the care she needs can be overwhelming. She is on highest rate DLA, has been since she was 1 and it has been reawarded until she's 14.
Yet asking for the help she needs in school has been a nightmare with implications from several people that we are unreasonable in asking for these things that are't needed by others (I.e. a 'why can't you just get on with it' attitude.)

There's so much ignorance around, which is understandable. If you've never had to deal with dd's condition I don't expect you to know what's involved. But maybe have the grace to recognise your lack of understanding and to listen to me when I explain the facts. And of course ,not to assume that you know more about it than I do ,when I live this every day.

Fluffy1234 Wed 02-Jan-13 18:47:27

Yanbu
Ds3 has epilepsy. Life is hard.

TheNebulousBoojum Wed 02-Jan-13 18:48:24

Clearly labelled routes round things, breathing spaces where you can step out of the herd and get your shit together, tolerance for wearing earphones and having iPods on. Or understanding about explaining what is going to happen and why before you do it. Which the security guard at one establishment now will remember after trying to take DS's bag and search it without explanation. Fortunately the other guard understood what was happening in DS's head and intervened in time.
Being allowed to deal with odd behaviour without anyone making a huge fuss, just quietly asking him (or me)if there's anything they can do and then stepping back if the answer is no.
Just a few of the things that make life easier.

MrsHoarder Wed 02-Jan-13 18:49:51

For those complaining about bring talked to slowly due to a hearing impairment, is that boot the correct thing to do? If someone says to me sorry I didn't catch that I'd repeat it more slowly thinking that my fast gable was causing a problem.

Thank you. That all seems really sensible - I'm surprised that places that do this are so unusual.

TheNebulousBoojum Wed 02-Jan-13 18:54:22

It's called Reasonable Accommodation, Puddlejumper. Costs little but has a huge impact on the lives of those directly involved.

MsNobodyAgain Wed 02-Jan-13 18:56:34

I find most people are good and understanding if I just say my twins don't see very well and have autism. They have nearly always let us back in any queue and put up with tantrums.

amicissimma Wed 02-Jan-13 18:58:08

I understand why you say this, but I think that it's an endless problem.

Often, needs clash. For example, ref the endless 'disabled toilets should be reserved for wheelchair users' argument: there are several medical conditions where the sufferer needs to use the toilet pronto, while the wheelchair user may have no bowel or bladder problems at all. If there is a queue, the first person's need for priority isn't obvious.

Or, replacing steps with a ramp can allow access to a wheelchair user but bar access to people with certain types of partial sightedness.

Or, the loud shriek that a child might omit might cause a sufferer from trigeminal neuralgia weeks of pain.

Or, someone on crutches may think that the person not giving up a seat in a crowded bus or train is mean, but that person may have severe back pain.

Or, someone with mental health issues may find another's mental health problems beyond their ability to handle.

All examples I have actually encountered. The only solution that I can see is consideration and tolerence all round, but even that can be a challenge after a day, night, week, month, etc of severe stress.

BunFagFreddie Wed 02-Jan-13 18:58:09

Crawling, do you ever tell people about your illness? For example, you might feel too depressed to cope with doing something. Would you explain that to someone? I have done in the past, but there's always some insensitive, smart arsed git who says "What have you got to be depressed about?" or they tell you to pull yourself together, or worse just laugh.

I'd love to be more open, because there really shouldn't be a stigma surrounding mental illnesses, but there still is. Nobody bats an eyelid about same sex marriages, but it's not ok to have bipolar or schizophrenia?

Not that there's anything wrong with same sex marriages, but you'd expect attitudes towards mental illness to have moved on, just like attitudes towards homosexuality and other issues.

I can imagine (2 of my cousins have ASD and that kind of thing would make life a lot easier for them. I'm a bit blush I needed it spelling out tbh).

How ridiculous that it's so uncommon though, when as you say it costs very little. Is there a campaign or awareness group that publicises good/bad places?

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.

CloudsAndTrees Wed 02-Jan-13 20:56:02

Amicissimma I'm sorry to have to ask, but would you mind explaining why it would be better if you consultant didn't sit with his back to the window please? I've tried to work it out but I'm struggling!

SirBoobAlot Wed 02-Jan-13 20:57:48

We really don't need to turn this into a battle over who has it easier. Everyone who is disabled, whatever the extent, suffers.

I have a handful of conditions. If I line them up after my name, I look very educated wink Two / three of them cause me to be on a stick or two at all times, and a wheelchair when needed / when I can. Sometimes people are great when hearing I have invisible health conditions. The amount of times people have smiled at me patronizingly when in my chair... I remember very clearly being outside the Globe with some friends before a performance, we went to an ice cream van. He took everyones order, then smiled down at me, and then said, "And what would she like, then?" to my friend. "Nothing from your fucking van!" or along the lines was the sharp reply from all of us. The irony was we were actually on an outing from a psych unit grin

Seriously. Each of us - or the person we love who is affected - faces battles every day. Let's not add to that by saying that a type of disability is 'easier', because they are all bloody hard work.

44SoStartingOver Wed 02-Jan-13 21:11:06

I think if you have the light behind you, it can cast a shadow and make it harder to lip read.

I think that is the case, because I lip read more than I realise and cannot hear properly without my specs!

Only a guess - so happy to be corrected!

44SoStartingOver Wed 02-Jan-13 21:14:16

On the positive side, I do some work with local police, who are trained to look for autism cards if an adult appears to behave in an unconventional manner.

There is actually a great deal of understanding that sometimes people may not be able to communicate very effectively, or not make eye contact or answer direct questions, but are not trying to be difficult. This has saved a lot of grief for people.

what DD2 would like (as a 14 yo who faints regularly) is for people to actually listen to her when she says she's OK and for people to please give her space, and not just assume that because she's a teenage girl, she either doesn't eat, or is drunk or on drugs. And that when her friends don't know exactly the name of her medical condition, don't assume that everyone is lying about there being one, in order to cover up the anorexia/drink/drugs you've assumed.

A medic alert bracelet and laminated info cards should give you a clue.

Fakebook Wed 02-Jan-13 21:30:07

Legoland let children with autism and other non visible disabilities through to the front of the queue.

FolkElf Wed 02-Jan-13 21:36:14

44 yes you're right. If you are illuminated from behind it means your face is darkened and in shadow which makes it harder to lipread.

AmberLeaf Wed 02-Jan-13 21:42:45

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

Really?? where have you been grin

Another one here to say that I don't think we need to have a them and us situation here between visible/invisible disabilities.

United we stand and all that.

ProudAS Wed 02-Jan-13 21:56:33

I don't want a them and us situation and have found people with physical disabilities to bepretty understanding.

Understanding in general has come on but still a long way to go.

MrsHoarder Thu 03-Jan-13 04:41:24

Thank you for the explanation about not speaking slowly, I'll avoid doing so in future. And feeling a bit daft now.

TheNebulousBoojum Thu 03-Jan-13 04:52:37

Why feel daft? You thought you were being helpful and considerate, now you have learned something new and are prepared to remember and act on it.
You sound thoughtful, not daft at all.

sashh Thu 03-Jan-13 05:25:53

* I doubt that colleagues would have stood by and let someone with a physical disability be treated in this way.*

Don't doubt it. I was bullied out of a job, before the DDA so couldn't do much about it.

misterwife Thu 03-Jan-13 05:55:05

I've been both visible and invisible - I was 2 months prem and have CP (diagnosed in toddlerhood) along with TS (diagnosed in adulthood a few years ago, complex vocal/motor tics, sweary kind, thankfully reasonably manageable compared to others I know with the condition). HFA was suspected in early childhood because of epic, epic temper tantrums/being able to read the Times at three years old/playing 'beat the till' with mental arithmetic, but never diagnosed. I have been in a wheelchair, and not in a wheelchair. I have been treated incredibly accommodatingly by some people, and incredibly rudely by others. I have a decent life. I have a DW and an almost-DD (due next month). I avoid mentioning my disability unless someone asks.

I have discovered a few things:

1) People tend to be very resistant to acknowledging hidden/invisible/less obvious (delete as appropriate) disabilities unless they have those disabilities themselves, or have a relative or close friend who has them. If you are one of the rare few who does acknowledge the presence of said disabilities without having some kind of personal link to them, then yay for you!

2) People have -enormous- problems with seeing anyone getting out of a wheelchair and walking. The idea of a disabled person's situation changing from day to day, from hour to hour, even from minute to minute, is alien to far too many people, and to the authorities, too.

3) With disability, there is no such thing as a middle road in terms of the reactions you get. People either bend over backwards to help - sometimes in a way which can be embarrassing - or are ignorant/dismissive/downright offensive.

Rudeness and ignorance are everywhere. All we can do is find whatever support networks we need. There is no 'them and us'. There is only 'we'.

Finally, I was very annoyed to read about what happened to PandaOnAPushBike. That kind of hair-splitting is unnecessary in the extreme, and symptomatic of the semantic and pedantic battles that cause petty divisions at a time when people with every kind of disability are being treated very shoddily indeed. Don't we need to club together?

MummytoKatie Thu 03-Jan-13 07:16:14

Yanbu but I will say that things have improved so so much in the last 25 years. (My db is a severe nut allergy sufferer who was diagnosed in the late 80s.)

Bonkerz Thu 03-Jan-13 07:24:34

My son aged 12 has ASD and has been told he cannot attend a local youth group even with a carer. He is 'normal' to look at but struggles to choose activities and is very vulnerable. I have agreed to pay a qualified/insured carer to take him but the group are saying this is possible. I wonder if he needed a carer to push his wheelchair if they would so readily turn him away?????

misterwife Thu 03-Jan-13 07:32:30

Their negative attitude stinks - I wouldn't be bothering with that youth group if I were you. I had nightmarish experiences with a similar one when I was that age - they didn't know how to cope with me at all. Try to find another one.

Proudnscaryvirginmary Thu 03-Jan-13 07:40:16

I agree that there should be far more education on different types of disability - I was embarrassingly, shamefully ignorant before I joined Mumsnet. Having a mother who glared or tutted at 'mmisbehaving' children in an intolerant way when I was growing up didn't help. Now I look at situations so differently and am less judgemental and I hope more helpful.

threesocksmorgan Thu 03-Jan-13 07:54:48

I agree with the posters who say it shouldn't bea them and us.
I get very fed up with this, it almost implies the if you are a wheelchair user it is some how easier.
it isn't, dd is nearly 18 and uses a wheelchair, she needs someone to meet all her needs. she can't walk or talk or feed herself, she needs hoisting.
we go to some where that is wheelchair accessible, and find all it means is one ramp!!
then we can't access anywhere else.
it should never be us divided, we the sn community should all stick together.

cory Thu 03-Jan-13 08:33:48

" I wonder if he needed a carer to push his wheelchair if they would so readily turn him away????? "

Quite possibly. Dd's school "forgot" to book her onto the school trip until I made an unholy stink and then they insisted I come too (at a few hours notice!) because nobody else wanted the responsibility of the wheelchair. I had to lift her out in the bus, because they had "forgotten" to book a bus with access.

We were told that statements and learning support were only for children with learning disabilities and that there was nothing for children who missed out on their learning due to pain and mobility problems.

Plenty of hate crimes against wheelchair users in recent years, sadly.

The haters and the scrooges have a lot to gain from dividing us against each other.

JakeBullet Thu 03-Jan-13 08:36:18

Bonkerez.....I'd say that youth group are breaking the law to be frank and need calling on it. Dreadful.

I totally agree with threesocks; this should not be about division....we need to be united. All our children are growing up in a world where discrimination exists and only by uniting can they tackle it. My DS's friend has complex health needs and uses a wheelchair. He might not be able to shout about discrimination but by God I will make sure that my DS can do it for him.....and also for himself.

Disability is facing real challenges at the moment with lots nasty judgemental people deciding what is and is not a disability. Our children are facing an uncertain future....and yes those with hidden disabilities are at risk of being sidelined here. Make no mistake though that those with visible disabilities are also being challenged and care packages are being cut. We need to be united.

OP the stuff you posted is shocking and YANBU to feel angry about it....I do think though that those of us with personal experience of disability need to be united against all forms of discrimination.

misterwife Thu 03-Jan-13 08:46:54

'We were told that statements and learning support were only for children with learning disabilities and that there was nothing for children who missed out on their learning due to pain and mobility problems'.

Did they really say this to you? It's bobbins. Any more suspect incidents from them and I'd be finding ways to take them to court.

cory Thu 03-Jan-13 08:51:42

It's in the past, misterywife: dd is now at secondary and getting adequate support. But this is what I was told by the LEA representative and I've had it confirmed from elsewhere that it's general policy in our LEA. The school told me that if I was dissatisfied I would have to take them to court and sue them for breach of DDA. Which I would have done, had not the HT been due for retirement and dd due to move up to secondary.

It's still doesn't make for equal treatment, though, if all parents of physically disabled children have to go through an exhausting court case whilst there is provision set aside for children with other types of disabilities- though I am well aware that not everybody with learning disabilities gets that money either.

FolkElf Thu 03-Jan-13 09:10:59

MrsHoarder Don't feel daft! It's one of those things where until you've been told you don't know.

I did a BSL module at university and then followed that up with level 1 BSL afterwards.

Now I have a young profoundly deaf relative and a daughter with mild/mod hearing loss. So that experience has come in handy (don't use BSL with them, but certainly being 'deaf aware' helps). I take it for granted now but I have to remember that most hearing people don't know how to communicate with deaf people because they are never told.

I tried doing some deaf awareness and signing with some year 6 children I taught once and I was shocked that some of them didn't even know what 'deaf' meant. Some of them thought I was mispronouncing 'death'.

threesocksmorgan Thu 03-Jan-13 09:18:41

dd mises out on a lot due to lack of space.
so she will go to the sn youth scheme. but can't go swimming as only one wheelchair can go at a time.
no problems for other disabled kids, as they only need a seat.
we could all cherry pick a story.
but at the end of the day. we should all stick together.
see my dd swims weekly at her sn school, so missing that although a shame, is not that bad. another child might never get to swim normally.....swings and roundabouts
all threads like this do imo is allow the nt world
to divide us. we should all be together.

fuzzpig Thu 03-Jan-13 09:52:01

YANBU, and I don't really get a vibe of 'visibly disabled people have it easier' from this thread - just that there are some different issues sometimes.

My life has been turned upside down this year (erm, last year) in that I have been diagnosed with one hidden disability (CFS/ME), and soon I am having an assessment for another (Aspergers). I have also had other mental health issues for most of my 26 years.

A lot of my issues are anxiety related anyway, so I feel constantly on the defensive for example on public transport. I worry the whole time, say if I am sitting in a priority seat because due to pain/dizziness I can't face walking to the back of the bus that day, that I will need to snap "but I AM disabled." I haven't actually had any comments thank goodness, but I have a list of responses ready, and the Aspie tendency to repeat things over and over in my head means that I get very worn out and stressed.

I also have big issues with spatial awareness and I am always the one who gets the nasty sarcastic "you're WELCOME" type comments because I bump into people or accidentally cut in a queue or don't say thank you to somebody holding a door because I genuinely don't see them, or don't realise what they are doing. The worst one was actually when I walked out of a lift and didn't hold the door open for a lady in a wheelchair (who was with somebody else) because I just didn't think. She shouted back "oh don't worry about me" - I genuinely hated myself for days after this. It was actually one of these incidents that finally broke the camel's back so to speak, it was almost a year ago now, and I was reduced to tears and came home early from an otherwise lovely day out, and started drafting the "What is wrong with me" thread that led loads of people to tell me "you're an Aspie". Certainly I don't hate myself as much any more because I know there's a reason behind a lot of my issues, but it doesn't stop me panicking that everybody I meet assumes I'm just rude.

Work has been interesting. I told them as soon as I'd got a referral about the Aspergers, and they've generally been quite supportive. Not so much with the CFS. I know it is really frustrating that I have missed a lot of work, but even though I'm now diagnosed, Occ Health are still saying it's not a disability. They are also very insistent that the few 'reasonable adjustments' (which basically amount to... a chair! Which really does help) I have been given are temporary. But there is no way I will be able to stand for an hour (I have postural orthostatic tachycardia syndrome as a symptom of CFS, which means on standing my heart rate rockets and my BP drops) even on a good day. I'm really scared, and I've lost all the confidence that the job gave me.

On a more positive note - I went to my local Cineworld recently, and noticed a sign for Autism Friendly film screenings - few and far between at the moment but it looks great and hopefully it will grow.

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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