Comments like this make me :(

[smileyK]

I hate it when close family member says " you're acting like 10 year old grow up stop crying act your age " makes me so angry mad inside I can never put across what I mean then I get told I annoy her

[Charlie C]

I hate it when people say 'act you age not your shoe size', Really grates on me that does.

[smileyK]

Really rubs me up wrong way makes me proper raging which makes me more upset which makes me cry more I try explain what I mean all time gets me so worked up frustrated stressed & anxious also think I'll never cope living alone by myself in strange / weird way want to prove them wrong more determined to achieve this goal now!

 

Charlie- I also have that horrible yukky saying to me in place of other sayings can't stand it! So critical in how it said and meant I feel so emotional weak depressed hits me more when have that kind of sayings said to me people struggle understand why affect me the way it does I get told " go away " if im going to cry like baby as it annoying! Don't think I'll ever get used to or accept that how to come terms with feeling like a child when told I behave like one!

 

Edited August 4, 2013 by trekster

[trekster]

I am being overloaded in the place that i am staying at the moment. i have found friends that accept me for who i am and i plan to move out quickly and avoid telling my family where i am living. i know this sounds strange but when you have relatives that are so unkind in the way mine are i think it would be understandable. Basically all types of meltdowns are completely forbidden even though they are a result of people being unclear with me in the 1st place.

 

Heres what ive had to put up with recently

 

1, a relative (AA) asks me to do something she could do herself and makes presumptions about my behaviour which are completely false. She gets right in my face to intimidate me and basically treats me like a rebellious NT. All because she wasn't specific or logical enough. i was asked to move something so someone could sit down. But the items weren't preventing the person in question from sitting down so i reacted 'wrongly', was told off for reacting wrongly and it escalated into her picking at my behaviours unrelated to the incident and leaving angrily.

2, the relative that needed to sit down G has only after today's explanations finally admitted AA could have handled the situation better.

3, 'mum' and brother turn up "warning ive just fallen out with AA and G" and their reaction escalates the problem.4

4, 'mum' refuses to make any allowances for my disabilities and laughs when the LEXI criterion for paralympics comes up with 'level of impairment none' "that you lexi" she tells me even though im a wheelchair user and have a number of disabilities in my signature. Any type of objection to her laughing at me (she insists shes not) results in her being angry at me.

5, by now G has decided to ignore me or discuss the situation leaving me completely stuck.

6, if 'mum' sees me taking any meds she tells me im taking too many (without specifying how many is enough so it would avoid her picking at my medication taking) and tells me about painkiller addiction, ive told her im not on painkillers (that's a laymans term therefore im not on painkillers) and that painkiller addiction isnt part of HMS/EDS literature. She laughs at that comment. In fact she laughs at any contradictory comment i make. She makes up with me 1 minute then starts picking at my disabilities the next.

7, she also makes very disablist comments about people either on the tv or IRL.

8, 'mum' has a tendency to speak for the family and insists anyone who is being understanding is soft on me.

9, her comments of 'were not here to live around your autism' when i reply that the talk about my autism is likely to stop once allowances were made she says 'you have to fit into society' i attempt an explanation of the 'social model of disability'

 

"The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations, may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences. The origins of the approach can be traced to the 1960s; the specific term emerged from the United Kingdom in the 1980s."

 

"

The social model of disability focuses on changes required in society. These might be in terms of:

• Attitudes, for example a more positive attitude toward certain mental traits or behaviors, or not underestimating the potential quality of life of those with impairments,
  
• Social support, for example help dealing with barriers; resources, aids or positive discrimination to overcome them, for example providing a buddy to explain work culture for an employee with autism,
  
• Information, for example using suitable formats (e.g. braille) or levels (e.g. simplicity of language) or coverage (e.g. explaining issues others may take for granted),
  
• Physical structures, for example buildings with sloped access and elevators, or
  
• Flexible work hours for people with circadian rhythm sleep disorders or, for example, for people who experience anxiety/panic attacks in rush hour traffic"
  

 

Source: http://en.wikipedia.org/wiki/Social_model_of_disability .... starting point for folks unaware of the social model of disability. The 1st few i feel would apply to autism. Physical structures i feel would ideally include sensory aware buildings hard to explain what that means.

10, 'mum' refuses to accept my additional diagnoses today insisted i have invented my HMS. i took her to a HMS group a while back and she kept disappearing on me then demanded to go home at the time she wished (i let her drive and it was her car) which had no warning. She also wanted to know why i was the only wheelchair user there (she knew 3 wheelies attended), i told her it was a result of late diagnosis and weak knees.

11, 'mum' calls me selfish if i refuse to do something straight away especially when it is for something non urgent she needs to speak to G about.

12, 'mum' told me i talk a load of rubbish because i mentioned that i "forget to the do the most basic of things, eg eat, pee, blink etc".

13, 'mum' is in denial about her autism and HMS which is why i think she picks on me about it because she knows she does those things. In the past G would stick up for me now G is refusing to stay neutral and tends to join in conversations. Surely when 2 people are falling out verbally it is best to stay neutral. G didn't even tell mum' off when she threatened to hit me.

14, 'mum' insists we were getting on better because she wagged her finger in my face and told me to "take a long hard look in the mirror", how that is going to help i have no idea, i have seen in the mirror a scared, confused, upset disabled person who just wishes her family would accept her for who she is.

 

My birthday is coming up next month. What i wish for is more than presents as they mean nothing to me without actions.

5 things from anyone that knows me (thanks in advance if you do the same for your friends/family).

 

1, to accept me for who i am and try and change things with me instead of for me (unless i ask).

2, to accept that if i say something is due to xyz disability as true because i am truthful when it comes to disabilities.

3, to ask why i do something and to accept my reason for doing that action especially when it comes to meltdowns.

4, to read the autism alert card regularly when you see me and accept what is on there.

5, to read autism literature in general relating to a particular problem, i can point out which are the best resources.

[MelowMeldrew]

"The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people. While physical, sensory, intellectual, or psychological variations, may cause individual functional limitation or impairments, these do not have to lead to disability unless society fails to take account of and include people regardless of their individual differences. The origins of the approach can be traced to the 1960s; the specific term emerged from the United Kingdom in the 1980s."

 

Socio-medical 'models' are an ideal more than a reality. Basically it is how the person define themselves NOT how society defines them. The politics of blame doesn't really alter much. Many issues disabled face do come from an medical standpoint,and it makes no difference tot hat disability if the door is easier to walk through, It is still there and maybe dependent on medications or therapies. My son has autism it wasn't inflicted by an uncaring society,my partner was born deaf, neither did society inflict that on her. You are talking about general acceptances with society, which I can agree with, but, if they accept us or ignore us, the disability remains. Many of us totally rely on Autism and other disabilities being accepted as a disability, without which we would not get care or financial support to cope. The danger is lauding the social model to the point where 'society' will then assume you don't have any problems, thus, require no help either, Cameron would love that. Basically the social sodel has become too 'political' and is hampering some support. We need support I don't care to play political games,who has the time or will ?

[trekster]

'Society is the main contributory factor to disabling people' is the point that was made there. So your disability and your relatives disabilities can be compounded by the attitudes to society eg thinking your son is rude when he avoids eye contact, or thinking your partner is rude when they dont respond to their name 1st time around in a noisy environment.

 

i do access benefits and medical services for my disabilities but they are secondary contributing factors rather than the primary ones. Presuming only paralysed people use a wheelchair is 1 example of societal prejudice.

 

If society would adapt by asking us why we behave or think a certain way then it would put a lot less pressure on the autistics themselves to 'fit into society'.

 

Im guessing your family and partner adapt to each others needs? i have certain members of my family (and 'peers' for that matter) that try and use shouting and other tactics to stop me being autistic. In certain settings im not allowed to take literally an expression 'because you are old enough to know what it means by now'. When an autistic gets overloaded they revert back to their literal thinking and reacting on instinct so any strategies which require memory or in some instances speech will be forgotten.

 

When are autistic meltdown/rage attacks going to be accepted as behavioural seizures?

Yes we can describe our problems as how 'disabling' they are but that doesn't mean society should expect us to 'behave normally' (which was the jist of the conversation)..

 

As for playing political games, im not into games of that sort, my disabilities are made worse by the unreasonable expectations society has on me. 1 relative in particular i have mentioned to her that i should be 'included at my level', shes taken that to mean i am deliberately avoiding fitting into society and that she isnt going to help me anymore. Then the next day she expects me to allow her to make drinks and for me to call her by the name assigned to her instead of 'P'.

 

Does that make more sense?

[Aeolienne]

Responding to the OP, I get upset when my parents say "I hope this isn't how you come across at interviews. No wonder you're not getting any job offers."

[collectingrocks]

If society accepted people for who/what they are then perhaps those on the spectrum would not feel dis-abled.