It's that time again (Autism April)

[Ahriman238]

So, April is Autism Awareness month, with World Autism Day tomorrow on the second. And it just so happens I have an autistic fiancé and several friends. In the normal run of things, I try not to trumpet my pet cause on the board because that would be boring, but since the entire point of the month event is to spread information around I'm once again suspending my self-imposed moratorium and pulling out the ol' soapbox.

I know there are several members of the board who have autism, or autistic family members, from prior discussions. I'm not naming names. If you want to chip in with your own stories and opinions, wonderful, I hate talking to myself in long threads. If not, that's fine.

It's been over a year since the DSM-IV redefined autism, which changed little. You should speak to a neuro-psych examiner if you or someone you know shows-

A. A total of six (or more) items from (1), (2), and
(3), with at least two from (1), and one each from
(2) and (3):


(1) qualitative impairment in social interaction, as
manifested by at least two of the following:

(a) marked impairment in the use of multiple
nonverbal behaviors, such as eye-to-eye gaze,
facial expression, body postures, and gestures to
regulate social interaction
(b) failure to develop peer relationships appropriate
to developmental level
(c) a lack of spontaneous seeking to share
enjoyment, interests, or achievements with other
people (e.g., by a lack of showing, bringing, or
pointing out objects of interest)
(d) lack of social or emotional reciprocity


(2) qualitative impairments in communication, as
manifested by at least one of the following:

(a) delay in, or total lack of, the development of
spoken language (not accompanied by an attempt
to compensate through alternative modes of
communication such as gesture or mime)
(b) in individuals with adequate speech, marked
impairment in the ability to initiate or sustain a
conversation with others
(c) stereotyped and repetitive use of language or
idiosyncratic language
(d) lack of varied, spontaneous make-believe
play or social imitative play appropriate to
developmental level


(3) restricted, repetitive, and stereotyped patterns
of behavior, interests, and activities as manifested
by at least one of the following:

(a) encompassing preoccupation with one or more
stereotyped and restricted patterns of interest that
is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific,
nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms
(e.g., hand or finger flapping or twisting or complex
whole-body movements)
(d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of
the following areas, with onset prior to age 3 years:
(1) social interaction,
(2) language as used in social communication, or
(3) symbolic or imaginative play.

C. The disturbance is not better accounted for by
Rett’s disorder or childhood disintegrative disorder.

There is a range of functioning levels, from a person who's overly-sensitive and quirky but can function relatively normal in non-social situations to people who are probably never going to be able to live outside an institute or without full-time caretakers.

The precise causes of autism remains obscure, there seems to be a genetic component (if you're autistic there's something like a 95% chance any kids will be) but that can't account for everything. I can swear to you that autism is not caused by vaccination, fluoride in the drinking water, lazy parents who pull out phones instead of their belts, or demonic possession, though I've heard all of these ideas expressed, apparently in total seriousness and sincerity. There are some evolutionary biologists who think it's always been around, it's just in the modern world that it's a problem.

Recently, Autism was in the news as the national (in the US) occurrence figures were adjusted upwards to 1 in 68 people, and experts hastened to explain that autism isn't infectious and the numbers reflect better diagnosis. Though the figures are incredibly skewed by state/region, with more rural areas having few reported instances. I'm sure this is deeply shocking to you all. We know that girls are drastically under-diagnosed, because most diagnosis happens in childhood and a quiet, antisocial boy is a problem, a girl less so.


Autism Speaks (boo! hiss!) mark the month with their "Light it Blue" thing, encouraging families with autism to replace their porch-lights with blue bulbs. All the autistics and families I know hang Christmas lights, representing the spectrum and puzzle-piece pattern of the autism awareness ribbon (and seriously, you can buy ribbon like that at a Michaels'). I've never known anyone outside our little community to recognize either except as something weird the neighbors do. But for the people who matter, seeing a string of Christmas lights in April gives you a major case of the warm-and-fuzzies.

Which is really all I want from this thread and month. Spread awareness and useful information (resources, coping strategies) sure. But for all the weird people out there who no one understands, to every parent whose had to clean shit off the walls or deal with a full on screaming SIB fit in public, I want to give the all-important reminder: you are not alone. No matter how bad it gets, there are other people dealing with these things, some worse off than you. You can feel like the only person in the entire world who has to deal with this, but in the age of the internet we can all share just a bit of the load, even if it's only listening to you rant and providing advice that may or may not be of any use to you. We're eager to listen and help however we can.

[Zaune]

I have mixed feelings about this. I'm one of those autistic people you mentioned, being diagnosed at an unusually young age for the time. And having a diagnosis... Well, I don't honestly think it made my life better. My mother (who frankly makes JME2's auntie look good by comparison) got kind of obsessed with it, to the point where I think she started to see me as having symptoms instead of a personality; never mind the "do you see yourself as having a disability?" stuff, she made me write it on my resume.

So, yeah. Not wholly convinced that raising awareness of autism and autistic people is without its drawbacks.

[Ahriman238]

No, there are probably some drawbacks. As a teacher the insane over-diagnosis of ADD/ADHD is a constant, if minor, source of irritation.

On the other hand, autistic children have been killed in "exorcisms" or by parents who couldn't take it anymore and sometimes those parents got a slap on the wrist from sympathetic judges/jurors. Or kids whose parents thought they could beat the strangeness and public "tantrums" out of them. Others have been shut up inside institutions and special schools (and you hear all sorts of horror stories of abuse) that they may or may not have needed.

My fiancé has a service dog (actually, she's retired now and we're raising/training a puppy to replace her) and you'd be astonished by the reactions you get when you a bring a dog into a store and restaurant and aren't obviously a.) blind or b.) deaf. People seem to believe this is not an actual disability, or are, to say the least, skeptical that a dog can help her in any meaningful fashion.

There is also much to be gained by having people understand, even a little, what's going on with the people around them.

[Ahriman238]

Reasons I shouldn't post right before bed. The biggest reason to spread awareness is that early intervention can make such a profound difference in the lives of autistic people, and the earlier they can get occupational and maybe physical therapy the better off they'll be.

[Sidewinder]

I was diagnosed with Asperger's (now defined as an autism spectrum disorder) at age 29, and I suspect both of my parents are undiagnosed sufferers of Asperger's- and from their descriptions of their experiences growing up, it's possible their parents (my grandparents) were undiagnosed sufferers of Asperger's. With the benefit of hindsight, I can now point out behavioral problems I exhibited in childhood and adolescence, which could've been dealt in a productive (nonviolent) manner with if those around me had better understanding of the problem.

It did NOT help that Chinese culture did not hold psychology or psychiatry in high regard- my parents initially supported the traditional view that "family shame shouldn't be spread outside the house," meaning it was wrong for me to seek psychological counseling for my emotional problems (a view that would've resulted in my suicide, had I not disobeyed them). Sometimes, my parents still voice the suspicion I'm using my diagnosis as an excuse to justify behavior they view as "wrong." It's all too easy for this post to devolve into an angry rant against Chinese culture and Confucianism, when the products of this culture and philosophy (my parents) continually subjected me to significant emotional distress- well into adulthood- and the symptoms of this distress were ignored until I was admitted to a psychiatric hospital.

[Broomstick]

Autism Speaks seems to have more or less taken over as Official Spokesthing for Autistics for the media sort of the way Susan G. Komen has taken over breast cancer, which I find really effing annoying even if I'm not entirely conversant with AS as an organizational. The fact I know a substantial number of autistic people and their loved ones have major issues with AS is enough to make me question the motives and methods, and I'm leery any time just one organization tries to be the one and only voice for a diverse group of people.

[Ahriman238]

Autism Speaks seems to have more or less taken over as Official Spokesthing for Autistics for the media sort of the way Susan G. Komen has taken over breast cancer, which I find really effing annoying even if I'm not entirely conversant with AS as an organizational. The fact I know a substantial number of autistic people and their loved ones have major issues with AS is enough to make me question the motives and methods, and I'm leery any time just one organization tries to be the one and only voice for a diverse group of people.

Autism Speaks is the Evil Empire of ASD charity. They're bigger than any other, which lets them credibly (to outsiders) present themselves as the face of the community, Suzanne Wright recently testifed before Congress as an 'Autism Expert,' yet your donations do NOT go into providing services, support or relief for autistics and their families. In addition to the high executive salaries and lavish vacations that are unfortunately a part of charities everywhere, Autism Speaks provides tracking bracelets (their useful service) but the bulk of their take goes into medical research. Some of that into investigating possible causes and cures but 97% is for research to develop viable prenatal screening.

In short, they do not want to help autistic people now, they want to give people in the future the option of not even having autistic kids. And then I get steamed thinking of all the worthy groups that give and do for the community: Easter Seals, ASAN, ARC (though they do get paid, they also live on donations) that this charity money is diverted from and I just get steamed.

I admit to feeling more ambivalent about that then I really should. A lot of people are not cut out to raise autistic children, but when I think of all the people I know and imagine that AS would literally prefer they had never been born...

They have also sponsored numerous "awareness" adds and videos, most recently "Raising the Alarm" that are less about awareness and more about scare tactics. Consistently the message is "If you have a child with autism, your life is over. You will sink all your money into therapies and care, and they will fail. Your child will never graduate, never hold down a job, fall in love or get married. You will care for them, full-time, until the day you die and then they will be chewed up by an uncaring society." Sometimes with a side helping of "an autistic child is as good as dead to you."



Oh, for a while there was a controversy over their claiming to represent the community while having not a single autistic on their board, so they added a token member and removed within the year. But to be honest, that's a tempest in a teacup compared to everything else they do and shouldn't, or don't and should.

[Zaune]

You know, I was going to credit them at least with not being 'Cure Autism Now!' (basically anti-vaxxers with a side order of disability discrimination), but on second thoughts? Never mind.

[Eternal_Freedom]

ANd that is why when I donate to charities it is usually small, local charities that have a much greater interest in actually helping people than being a big organisation.

The exception being the UK Guide Dogs people, since despite being a big national organisation they actually DO things. And they send me cute "pupdates" on the dog I'm sponsoring, but that's totally irrelevant.

[Ahriman238]

As much fun as ranting about Autism Speaks can be, I did promise an exchange of information and some amusing anecdotes.

One of the most visible problems with autism is the meltdowns. When you get overstimulated by lights and sound, or overcome with stress, sometimes by significant disruption to your routine you just... stop. And usually scream. You rarely respond well to people who will usually try to yell at or touch you if they perceive an adult having a "temper tantrum" in public, and you tend to attract rubberneckers. Depending on the severity of the meltdown, you may bite, claw at, or hit yourself, a behavior called SIB (self-injurious behavior). Violence against others is rare in a meltdown, but does sometimes happen and I have a fine collection of scratches from interrupting my fiancé's SIB. What's fun is when she calms down just enough to realize she hurt me, then promptly backslides. Well, in truth she has two types of meltdowns, ones that can be dealt with easily if (someone she knows and trusts) hugs her hard and tells her everything is going to be okay for a few minutes, and ones where touching makes everything worse. I can tell the difference by whether or not she screams more if I go to hug her.



*gratitude to England's National Autism Society for their campaign of ads. Infinitely superior to Autism Speaks.

For limiting overstimulation, a pair of sunglasses and some nice shooting-range headphones are your best friends on an outing. My fiancé often carries her headphones on the outside of her backpack, around her neck or on head, ready to be slapped on in a moment's notice.

Deep pressure is usually very soothing to people with autism. My fiancé likes her hugs hard and long. Another thing that helps, particularly on road-trips is a weighted blanket, essentially a blanket with a series of beanbags sewed to it so it weighs four, five, ten, maybe twenty-five pounds. It makes nights a lot easier too. The major problem is washing the thing, we have to go to the Laundromat and use the humongous washing machines lest we break ours.

We also have communication apps on the ipad and a service dog (and yes, there is such a thing for autism) but I need to get myself to work now. I'll get into these later.

[Zaune]

I can definitely testify to the headphones thing, though in my case I'm not sure how much of that is autism and how much is just my low tolerance for whining small children and other annoying noises.

Shooting-range headphones might not be a great idea though, as they'd likely get some funny looks. I suggest some nice stereo headphones with Active Noise Reduction. They'll work quite well on their own, but some music might not be a bad idea; if they're too effective then total silence might be even more unnerving.

[Serafina]

As someone who is currently in the process of getting diagnosed with Autism (albeit probably at the less severe end of the spectrum), i just wanted to thank you for your interesting posts regarding that topic.

[Broomstick]

*gratitude to England's National Autism Society for their campaign of ads. Infinitely superior to Autism Speaks.

While I agree the Autism Speaks ad is pretty awful, the one thing I wish the ENAS ad had included was something about how to deal with someone in that state of panic. I mean, I know what to do if someone is bleeding, having a seizure, or a bunch of other first aid things, but I'd be at a loss when confronted with someone having, as you put it, a meltdown. I very much doubt it's amenable to reason, but if there was some way to lessen the distress I'd sure like to know it.

Of course, the fact that autistic people are individuals just makes it that much harder - I can only assume there is not one, guaranteed thing to do. People not making eye contact, odd vocal mannerisms, and rocking/stim doesn't freak me out, it's odd but it's not dangerous. Something like the gentleman having issues dealing with the train schedule, though - really, it's gets to where I'm afraid security is going to hurt someone who is frightened but not truly dangerous to anyone else (I would worry about someone in that situation doing something like, say, running onto tracks where they might be injured or struck by another train).

[Zaune]

While I agree the Autism Speaks ad is pretty awful, the one thing I wish the ENAS ad had included was something about how to deal with someone in that state of panic. I mean, I know what to do if someone is bleeding, having a seizure, or a bunch of other first aid things, but I'd be at a loss when confronted with someone having, as you put it, a meltdown. I very much doubt it's amenable to reason, but if there was some way to lessen the distress I'd sure like to know it.

The same thing you'd do for a non-autistic person who was having a panic attack or behaving erratically due to some other medical condition, I guess. Stand well back, give them some space and let them calm down a bit before you approach them. If they're not accompanied by a carer then they're probably on the higher-functioning end, so a simple, "Hey, you okay there, sir/ma'am?" is probably a good place to start. Once you've established communications, get them somewhere quiet and let them calm down the rest of the way; the traditional English method would probably be to sit them down with a cup of tea.

Ultimately, the best thing you can offer is compassion, understanding and patience.

[Ahriman238]

While I agree the Autism Speaks ad is pretty awful, the one thing I wish the ENAS ad had included was something about how to deal with someone in that state of panic. I mean, I know what to do if someone is bleeding, having a seizure, or a bunch of other first aid things, but I'd be at a loss when confronted with someone having, as you put it, a meltdown. I very much doubt it's amenable to reason, but if there was some way to lessen the distress I'd sure like to know it.

The same thing you'd do for a non-autistic person who was having a panic attack or behaving erratically due to some other medical condition, I guess. Stand well back, give them some space and let them calm down a bit before you approach them. If they're not accompanied by a carer then they're probably on the higher-functioning end, so a simple, "Hey, you okay there, sir/ma'am?" is probably a good place to start. Once you've established communications, get them somewhere quiet and let them calm down the rest of the way; the traditional English method would probably be to sit them down with a cup of tea.

Ultimately, the best thing you can offer is compassion, understanding and patience.

Zaune has the right of it, give them some space and time. If there's anything like loud noises or flashing lights in the vicinity that might be triggering or worsening things and you have the power to stop them, please do so. Otherwise let people deal as best they can, we're happy just with a lack of cold and judging stares. Actually, if you can tell the rubberneckers to take a hike, that'd be great. Or tell any nice police/security men that you think this person is autistic, having a normal meldown/freakout and they should probably try and approach this gently and not open by grabbing an arm and pulling. And if there's bad enough SIB you may need to step in and restrain the person, but be sure it's really, really bad because you'll probably make the meltdown worse in general at best, at worst they may attack you.

With my fiancé I can give her a bearhug and that often helps, but only because I'm a person she knows well and trusts implicitly. I may try and remove her from the immediate situation/environment if I believe that's the source of the meltdown.

[Ahriman238]

When you're autistic, other people can sometimes be as incomprehensible and terrifying as Cthulu. They communicate on several levels (intonation, body language) that you simply can't understand, each of which can completely change the meaning of a sentence. You can't always reliably catch sarcasm, and that's the easiest part of the social stuff to wrap your brain around. This is assuming people aren't littering their speech with metaphors and references that you don't get...



Or asking questions and getting unreasonably upset when you answer honestly.



And of course, people sit at the center of vast networks of familial and social connections that can be hard to keep track of. And they change their minds at a moments notice.


One of the better ways of handling the scary unpredictability of people and life in general is to have a detailed schedule and plan. Autsitics frequently pre-script conversations so they know what to say, my fiancé handles social gatherings by steering the conversation towards dogs and giving her forty-minute speech about dogs in general, hers in particular, funny anecdotes etc. But just having a plan, and a few backup plans is reassuring, it lets you impose a sense of order on an otherwise unpredictable world. My fiancée can endure all sorts of things that are frightening or painful to her (like our average hospital visit) just so long as there's a plan and she understands what she's doing and what's going to happen next.

Autistics in isolation frequently develop complex routines and rituals to understand and control their lives (it's even listed as a diagnostic symptom). Something like "First I get up in the morning, than I shower, dress, brush my teeth, make my bed and make and eat breakfast." Once this becomes their routine (about two to three weeks of daily repetition) this string of complex tasks becomes nearly automatic. The downside is unexpected changes in the routine, like the train being held and not unlocking the doors, can really throw off the whole day and then it's Meltdown City Population: You.

[Ahriman238]

It's now been two years and change since I took my fiancé flying for the first time ever. I spent weeks waking up in the middle of the night, afraid of how a meltdown on a plane or in security could go horribly wrong. This is where another trick comes in, the social story, essentially I spent weeks with her going over everything that was likely to happen, everything I thought might happen, that she might see or hear. I even put together a picture book (there are online resources for that, as well as making videos) and in the end we were over-prepared and had only one small meltdown she we entered the main concourse and she wasn't ready for the sheer noise of it.

In fact, she's a lot better at flying than I am.


Let's talk about spoons/token theory. This is something that applies to a lot of invisible disabilities, not just autism. Depression in particular. In fact, the first person to use the spoons analogy had, IIRC, fibro-myalgia. And first had this discussion in a diner, hence the use of spoons as a visual aid. It's quite simple, everybody gets a number of spoons representing an invisible resource, the energy and focus to perform a relatively simple task, like choosing clothes for the day and then putting them on would consume two spoons. Most people, outside of exceptional circumstances, have an effectively unlimited number of spoons and can replenish theirs with a nap or a video game break or something. If you're severely depressed, autistic or it hurts to move, you may find yourself with a hundred or less, and you can go through them quickly so if you don't budget your time and resources, you will have officially run out of shits to give before lunchtime.

Personally I think the spoons analogy is oversimplifying things a lot. But my fiancé loves it as a model for something she had a lot of trouble explaining to me before, namely her erratic energy levels, and at the end of the day I watch and participate in autistic life to an extent, but she lives it. So I'll defer to her judgment in this.

[Ahriman238]

For all my good intentions, I am just one person and when it comes to autism, very much an outsider looking in. If you have autism spectrum disorder, or if you're curious and willing to take it outside the board, I strongly recommend the forum at Wrongplanet, the Autism Spectrum House group on facebook, and the Autism Self-Advocacy Network, a charity nonprofit actually dedicated to supporting the community and promoting policy/social change where necessary to help. I admit, the fiancé and I are card-carrying members of ASAN New England, and acquainted with the founder of the Autism Spectrum House group, so there may be come bias on my part there.

...

Last Saturday, two dozen vigils were held across the US for disabled children murdered by their parents or caregivers. Not just autism, but across all disabilities. We missed the event itself, though we later heard that when it came to the reading of names they had multiplied in a terrifying, heart wrenching manner.

And half the time, particularly in the South and Midwest, the alleged "people" who betray their families or charges in the most perverse, fundamental way imaginable get off with a slap on the wrist, maybe a few years in jail. People like Jeremiah Wright, who last year was one of the vanishingly rare cases of a successful insanity defense after decapitating his only son for the high crime of being born with cerebral palsy back in '11.

I know it's hard to take care of someone with autism. Believe me. I know what it is to feel inadequate to the job, to lie awake at night staring at the ceiling and worrying. But for the love of all gods real or fictional, reach out to the community, reach out to your support network and get some help.


One exceedingly valuable service for family and caregivers is respite services. These are when the autistic child or adult in your life is taken on group outings, or to rec centers for discussion meetings and games, so you can have a day or even just a few hours to yourself. This is priceless in preventing you from getting burned out, or getting so twisted inside that fucking murdering your loved ones starts to seem like a reasonable idea. That said, do your homework first, make sure the group offering the service is on the up-and-up, there are plenty of horror stories of autistics being abused or raped in hospitals (particularly psychiatric) school programs, or really anywhere a neurotypical may end up in a position of power over an autistic with little or no supervision.


I'm sorry, I haven't posted in a few days and I wanted this to be a helpful sharing of resources, but it turned into a rant instead.

[Ahriman238]

A big contribution to the common nature of overstimulation is that autistic people tend to be more sensitive. The numbers I keep hearing are to assume a given light or sound is 3-5 louder/brighter, I'm not sure of the original source for that though. And the majority of autistic people have very little ability to filter or tune out sensory stimuli. My fiancé cannot keep track of one voice in a crowded restaurant, even if I'm the only one in the booth with her. Similarly, the faintly audible (to me) hum of fluorescent lighting gives her a headache in short order.

There have been several attempts over the years to try and duplicate "autistic vision" for neurotypicals. After some conversations with my fiancé, we've put together a "best of" reel of the youtube ones. Please note that by design these will be LOUD.



Who doesn't love classic Transformers?







And the NAS again.

[Zaune]

I've never noticed the light-sensitivity thing, unless you count habitually keeping the brightness on my monitor fairly low to reduce eyestrain, but the difficulty with loud noise I can attest to. Only really manifests in my choice of pubs though.

[Broomstick]

Last Saturday, two dozen vigils were held across the US for disabled children murdered by their parents or caregivers. Not just autism, but across all disabilities. We missed the event itself, though we later heard that when it came to the reading of names they had multiplied in a terrifying, heart wrenching manner.

Personally, I blame Hallmark.

No, really, the glurge-filled TV movies with the inevitable happy ending are part of the problem. It gives the illusion that there is a "fix" for disabilities, that the problems go away somehow, that love overcomes adversity.

It does not, in any way, prepare a person for the endless grind of a disability.

Not that the disabled live horrible lives, not that it isn't worth being a caregiver, but the problems do not end. The disability doesn't go away no matter how well it is coped with or compensated for. The caregivers are hailed as heroes, martyrs, saints... anything but real human beings who get tired, who get worn down, who also need to be cared for. Caregivers do not get the support they need in our society that talks about "overcoming", "conquering", and "fighting" disability rather than accommodating and compensating for what can't be fixed, or seeing it as a form of surrender. That's why Autism Speaks does so well - it speaks in the "proper" terms, of conquering, of fixing, rather than dealing with the day-to-day problems and trials of the condition.

Sure, research is a great thing, but in meanwhile, until it bears fruit, people need help TODAY. And that includes things like respite care for caregivers, to reduce the stress on them and allow the caregivers to have a life, too, and alternatives to putting it all on the families both because not all families can cope with a given disability, but also because families grow old or have accidents or illness or other crisis and sometimes the family is not the best place. Group homes, supervised living, and so forth should be more common alternatives and not blocked by NIMBY's.

Yeah, OK, I'm rather passionate about this, being married to someone disabled, having cared for my mother in her last months, having a brain-damaged nephew who is unlikely to ever be a truly independent adult ever again... No, not the same as autism, but while every disabled person is different from every other they do still have things in common, as do their caregivers.

[Eternal_Freedom]

One thing that really pisses me off is how everyone talks of how hard it is to be a carer for someone with a disability, or how difficult it must be to raise a disabled child, or support a disabled spouse. Now, when reading what I say next, please bear in mind that I have the utmost respect for those who do act as carers.

Growing up/living with a disability is just as difficult as caring for someone with a disability.

Yes, that is from personal experience with congenital glaucoma. It fucking sucks. Yes, those who care for us do a tremendous job in helping us live approximately "normal" (although I despise that term) lives. But it isn't just the carers who struggle with this shit.

[Broomstick]

Actually, I think having the disability is often worse than being a caregiver, because caregivers CAN get away for awhile whereas the person with the disability has it 24/7. How bad that will be, of course, depends on the disability. I was, however, responding mostly to the topic of caregivers harming/killing their charges, and as I said, i think stress has a great deal to do with it.

That's yet another reason I think there should be more funding/research with the goal of enabling the disabled to compensate for their disability and care for themselves. It reduces the burden on everyone.

[Eternal_Freedom]

Certainly it can be worse (and often is), but as someone who grew up with a disability I don't have an objective way of telling it was harder for me or my parents/brothers/friends etc.

But yeah stress is a big part of it. The trouble is that if someone sees a carer stressing out, they correctly assume that they've reached a limit and need a break. If someone sees a disabled person stressing out, it's brushed off as "it's just their (insert condition here)." Which it is, but not directly.

EDIT: Broomstick, please don't think I was disagreeing with you, I just wanted to raise that point anyway.

[Broomstick]

No, I didn't think that at all.

Your remark about perception is spot on, though - really, the biggest obstacle faced is often the attitudes of the non-disabled/non-caregiver society at large.