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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be sick of hidden disabilities getting overlooked

124 replies

ProudAS · 02/01/2013 16:59

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.

OP posts:
sannaville · 02/01/2013 18:16

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 · 02/01/2013 18:16

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

sannaville · 02/01/2013 18:18

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

SilverAndSparklyKat · 02/01/2013 18:22

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 · 02/01/2013 18:22

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.

PeggyCarter · 02/01/2013 18:27

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Crawling · 02/01/2013 18:28

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 · 02/01/2013 18:28

'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 · 02/01/2013 18:35

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 · 02/01/2013 18:35

'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 · 02/01/2013 18:37

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 · 02/01/2013 18:40

TheNebulous see above.

Amytheflag · 02/01/2013 18:40

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.

PeggyCarter · 02/01/2013 18:41

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OxyMoron · 02/01/2013 18:45

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 · 02/01/2013 18:47

Yanbu
Ds3 has epilepsy. Life is hard.

TheNebulousBoojum · 02/01/2013 18:48

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 · 02/01/2013 18:49

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.

PeggyCarter · 02/01/2013 18:52

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TheNebulousBoojum · 02/01/2013 18:54

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

MsNobodyAgain · 02/01/2013 18:56

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 · 02/01/2013 18:58

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BunFagFreddie · 02/01/2013 18:58

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.

PeggyCarter · 02/01/2013 18:58

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amicissimma · 02/01/2013 18:59

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