Non-visible disabilities: Living with a hidden disability
Aha ๐
Non-visible disabilities
Hidden disabilities
Yes!
I'm so glad I found this! I was never sure about invisible disabilities because they rarely are invisible.
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What does everyone else think about 'invisible'?
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Comments
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Well - i can only speak about autism in relation to my own son.
So - just thinking about my son who has a learning disability as well as autism. He is under a legal guardianship and is deemed a mentally incapable adult.
If you met him in some situations, you wouldn't guess he had any problems at all. Especially if he were sitting down and didn't need to speak much.
Anyone with any knowledge about autism would know as soon as he got up to walk as he definitely has a bouncy gait common to some people with autism. But even that is not enough to draw attention to most people. And he looks very young for his years but not to the extent where he'd be identified as having an obvious disability to an un-trained eye.
He is very good at nodding and laughing in the right places - this masks a huge comprehension deficit with complex, fast conversation. He gets the 'jist' but functions round about the level of a 10 to 12yr old. He is 26.
So - yes - autism is one condition that can be invisible in some people.
I suppose conditions that fluctuate too - depression, some pain conditions - on good days they might become invisible.
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Anyone with any knowledge about autism would know as soon as he got up to walk as he definitely has a bouncy gait common to some people with autism.
I'm pretty knowledgeable about autism but had no idea this was a trait! I have watched people bouncing as you describe but never knew why they did that.
I can identify other autistic people quite easily. There are so many visible clues! Long before my late diagnosis (54), I gravitated towards certain types. We try to mask and blend in but I think the autism shows itself one way or another. Looking years younger but not behaving as expected I can certainly relate to. I love not looking my age now of course ๐
Those fluctuating conditions you mention tend to leave their marks on people's faces, skin and in their eyes. Our faces reflect the lives we've had. That's why I say our disabilities are rarely invisible.
Your children are incredibly lucky to have so much understanding and support from yourselves.
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Is this a question about the correctness of terminology or something else?
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The terminology we have adopted and use to describe those of us without a stick, wheelchair, walking frame or any other clear signal that we have a disability.
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I've decided non-visible doesn't cut the mustard either. Less-visible, barely thereโฆno.
Hidden disability is the best term here, I believe.
Thing is, even when I tell someone I'm autistic, they forget or have no idea why I've told them! They haven't heard or understood.
On another note, I was warned that autism got harder as you age but I haven't found that yet! Autistic life is better in every way so far ๐
Scope, what are your thoughts on HIDDEN v INVISIBLE disability ?
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Thanks for your kind words @WhatThe. Gait is commonly affected in autism due to sensory and balance issues. My son didn't walk til he was 2yrs and his motor movements are very slow. But it isn't a feature common to all autistic people.
It is interesting to me that you weren't diagnosed until 54yrs - was it recognised at all that you had difficulties as a child and have you always viewed yourself as a disabled person?
My other 4 (adult) children also have autism but are cognitively able and don't view themselves as disabled (at least i hope they don't; I certainly don't)
I describe them as 'having autism, but not to a disabling degree'
What do you think of that?! 3 of them have had mental health difficulties due to their difficulties but they are independent and well capable of looking after themselves - very different from my son who cannot look after himself and is very unlikely ever to become completely independent.
I definitely think of him as disabled, but not the other 4.
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Hi!
Terminology and definitions are my favorite! It is worth noting that if a person is completely blind, then he does not see any disability in other people - neither a cane, nor a wheelchair... you understand me?)
Therefore, the term requires clarification or redefinition for rigor. And it's hard work.Or is this a topic about the attitude of healthy people, including, of course, those who are not blind, towards disabled people without a cane, and so on?
Wonderful! I'm not the only one who sees the imperfection of definitions)
But I think it is useless to explain to each interlocutor that disability is not always visible - school, church and other means of propaganda should deal with this.1 -
For example, I can take care of myself outwardly like a healthy person IF I take a huge amount of painkillers, and only while they are working - about an hour or an hour and a half. I also sit on an armchair and watch TV like a completely healthy person - who am I then according to your method of determining disability?
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I can only talk about autism @egister. Obviously, with all 5 of our kids being autistic, i have looked at my husband, myself and others on both sides of our extended families as there is a strong genetic link with autism.
Nobody in our families would have been considered disabled (though we certainly have family members that do show autistic traits)
It is interesting to me that our OP got a late autism diagnosis and is around my age - i wondered if the OP had had difficulties identified in childhood and had been raised as a disabled child who always considered themselves to be disabled, or was assumed to be developing normally and raised with no additional educational or social supports - in which case do they now consider disability as part of their identity and did that come post-diagnosis at the age of 54.
The people in our family with 'autistic traits' are able people. Focusing on the many things they can do and not the things they can't.
My eldest son, for example, he is moderately dyspraxic as well as autistic but, after being well-supported through primary school, he kicked off against all support at secondary school. Left home at 18 and deliberately went into a job requiring co ordination skills to prove he could!
So - i would be interested to know if my term 'autistic but not to a disabling degree' is acceptable to the OP?!
Because i don't think my 4 cognitively able children are going to let autism hold them back now they are out of the school system!
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anisty, in simple terms, I would say your son has severe autism and the rest of us have 'mild' autism.
Yes, I was a difficult child, flunked at school and was ill rather than disabled. The idea that I had a 'learning disability' with autism came as a shock and I didn't immediately accept it at all. I do now think it's probably correct though.
I was also very able in other respects which is why it went unnoticed. My teenage daughter identified the condition and it was a battle to get my diagnosis since I had 'managed' all these years (I hadn't!)
No two autistic people are alike and you have demonstrated that this condition does not have to be disabling with the right support!
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Do you think of yourself as a disabled person with abilities or an able person with disabilities? It does make a big difference, doesn't it, how you perceive yourself.
Support is the biggest factor - my disabled son has a mix of paid supported employment and voluntary work too so, even though he cannot be independent, he can contribute and he is a visible member of the community.
I do have an altogether sadder tale - my brother born 1969 - with hindsight i would bet quite a lot of money that he had the PDA form of autism. A very difficult baby and child who would not fit into any structure of rules at all. He had a problem with setting fires as an older child and was termed 'delinquent' in those days.
Though, interestingly enough, my Mum wondered about autism even then in the late 60s as he would not make eye contact with her as a baby.
He was fascinated by trains and started making lone train journeys around the age of 10, just to experience the ride.
As a teen, he got into cars and also a bit of trouble with the police.
All downhill from there. He was 18 when our mum died. Our dad was a wreckless character who worked away so my brother was left homeless at 18. A series of failed relationships, kids he wasn't sure were his and ultimately a life of homelessness. Completely unable to fit into society in any way, shape or form.
He was still alive pre pandemic but in poor health and living in a tent. I doubt he is alive now.
He was cognitively able but had no support at all really beyond the age of 12 as my mum was ill for a few years before she died and we largely looked after ourselves.
Support - and especially family support - really is a key factor in prognosis.
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Or is this a topic about the attitude of healthy people, including, of course, those who are not blind, towards disabled people without a cane, and so on?
egister, yes.
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anisty, there is a distinction between a disabled person and a person with a disability and I am the latter because I am mobile.
Support - and especially family support - really is a key factor in prognosis.
Absolutely agree with you!
My brother became delinquent, didn't finish school but managed to avoid prison. He still doesn't think there's anything 'wrong' with him! I had many mental health crises. Bossy big sister was a high-achiever so we were expected to follow suit but disappointed everyone instead. I'm sure my father was autistic - we were very alike.
What a sad tale about your brother and all of you losing your mum at a young age ๐
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OK. But, I believe, you understand that your particular case is not applicable to everyone - the course of the disease is individual.
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And how can a person without special education determine whether another person passing by has an invisible disability or not?
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Well, I don't believe such disabilities are invisible but hidden!
How can another person determine this? Precisely the problem we have unless we wear a badge or hat to announce our disability!
Somebody wearing headphones isn't saying AUTISTIC HERE but there will be other clues in their mannerisms, clothes, posture, voice...detectable to me anyway.
Pain - which I know a lot about - can be controlled with medication, heat, exercise etc but autism is 24/7 and can be unpredictable and frightening in the wider world. If I'm feeling flaky and have the choice, you won't see me because I'll be indoors in my safe place. You won't need to make any allowances for me when I'm alone.
I can think I'm masking when I'm not. I've been asked what I'm nervous about and thought "Really? I don't feel nervous". I knew nothing about autism but clearly the world perceived me differently.
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OK. But, I believe, you understand that your particular case is not applicable to everyone - the course of the disease is individual.
Ouch!!! Autism is NOT a disease process!! It is a neurodevelopmental condition.
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Yes, unfortunately, we did have a complicated childhood @WhatThe - but it has made me an incredibly resiliant person. I was fortunate in being the older sibling and able to escape to university in the days when grants and housing benefit was available to students living far from home. Never went back.
I might indeed be similar to your 'big bossy sister!' but you do what you to to survive a tough start.
Now - that is interesting you comment on mobility. My disabled son - he is fully mobile with no physical disability so i'm not sure physical disability is the determining factor.
I think it's more to do with the dependence on another person. Though even that isn't a good definition as we are all dependent on others to some extent. I suppose this is what the pip form tries to establish - how much help is needed to complete a task to the same level as an able person.
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Yes, she ruled the roost at home, pretended not to know me at school then got on with her life leaving me to deal with two warring parents ๐
anisty, have a look in a dictionary for those definitions. That's what I read.
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It's a question of how to determine. If you don't call it a disease, then there's no need to spend extra money on the NHS, right? ๐
Any unhealthy state of a person is costly for the crown, but if it is not called a disease, then, according to the logic of the bureaucrats, it is not worth spending money on it.
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