What is the one most important priority out of these five?

  • • Transforming the attitudes to autism in society, autism acceptance

    Votes: 16 50.0%
  • • Helping to manage transitions

    Votes: 2 6.3%
  • • Employment

    Votes: 5 15.6%
  • • Relationships

    Votes: 1 3.1%
  • • Mental health and wellbeing

    Votes: 8 25.0%

  • Total voters
    32

What is the 1 st most important priority in autism policy?

What is the most important priority at present in developing and delivering new services to autistic adults?

  • Transforming the attitudes to autism in society, autism acceptance
  • Helping to manage transitions
  • Employment
  • Relationships
  • Mental health and wellbeingView attachment 23View attachment 251 number one 43814.jpg
  • 1 number one 43814.jpg
 
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Natashanathan6

New member
I think first my writing the questions mental health and well-being, you are already confusIng lots of us.
The word well being is not used a lot, so to put it together with mental health, you need to make it clear what you are actually trying to help? It’s common for us to think that all Psychological,pychologists and Psychiatrists are the same, that they are all going to come in white coats and lock us up. When you go for help, so it actually stops some people going for help.
I am autistic, and have fibromyalgia, hypomobility and have also had operations on my tummy because of of boarding tumour. I am now under Dr Carline Firman, senior clinical psychologist pain team. at the moment and had to ask my autism nurse to attend all the meeting with me. Because I was not only to frightened, but needed some reassurance also the way we/ an autistic person to experience pain is totally different than someone who is not autistic. Even ”worry tummy” is real if you are frightened or anxious about something it can make the pain worse. Learning where the pain comes from, is scary when you are on your own, then figuring out if you should talk to someone about it can be challenging. Making your mental health and well being even worse? Cognitive behavioural therapy is really good to help with mental health and wellbeing and it can be effective once your sessions have finished because you can the how to do some exercises on your own.
I have seen counsellors, and psychiatrist who at first just Monitor me, because of all my health conditions, I just needed someone to talk to. They said there “ was nothing wrong with my mental health, but my health condition and society “ made it difficult sometimes.
Covid-19 was emotional, and mental difficulty when all you see and hear is bad news about the effects on autism, volunteer Which works closely with inclusion north and sometimes and LeDeR in action North Yorkshie. So I already knew about those with learning disabilities and autism dying before their time, to young. The no help was given to look after us during covid-19 and we had the highest amount of deaths. Then all the news about DNR, not even properly talked about, was difficult.
At some time my son, who is 22 became very unwell, with his mental health, we were in lock down at the time, because I am not the patient just the mum, no reasonable adjustment were put in place so I could communication with the team looking after him. There was lack of communication, and I was not heard or they thought I was over exaggerating, misinterpreted, what I was trying to say.
As an result once my won, went to the hospital I had to seek help myself, the ripple effects, I am still struggling with now.
it hard, for an autistic mum, who sudd finds there son has severe mental health problems, and help when my my head is tellling me to running away, this is is it physically and mentally to difficult, but your heart still says he is your son, I cannot separate my emotion, when asked what help I need away from what happening with my son.
I am sorry for a going on.i have lots more to share. Thanks Natasha
 

Dai

Member
It has been 5 years and 3 months since my diagnosis. I have read lots - seen counsellors and studied myself. Recently I watched the Swedish Detective Drama called "The Bridge" on BBC iplayer and find myself so in tune with Saga ( pronounced saiga)> Towards the end of the last set she made the remark that betrayal by a close friend is the worst form of emotional distress, far worse than loosing a loved one. Why? We put a lot of store into those very few friends we have. We invest a lot of time in them, if they respond well to us, and over time may share a lot of personal stuff. Betrayal by such friends, is as I know, very very painful, and causes long term suffering. THEY - the non autistics just don't get it. And no I don't have control over everything. I am brutally honest and people hate this, I am highly focused on the things I am interested in to the exclusion of everything else, if I am not interested in the lives of others, I won't probe and wait till they tell me their stuff, my bad meltdowns can't be avoided nor can the rare shut downs, I need alone time, I have acute anxiety if I don't get answers fast, I am very attentive to the needs of others, and get frustrated by their slow sometimes indifferent response, I don't need reminding of important facts once in my brain they will be there for ever, though equally I can remove facts of no relevance and have no further recollection of them, I have to manage the different senses of which eye contact is tricky. Am I mentally sub normal? No I refute that. Majority society needs to get off its high horse and recognise us autistics, for our differences.
 
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Julia28

New member
It has been 5 years and 3 months since my diagnosis. I have read lots - seen counsellors and studied myself. Recently I watched the Swedish Detective Drama called "The Bridge" on BBC iplayer and find myself so in tune with Saga ( pronounced saiga)> Towards the end of the last set she made the remark that betrayal by a close friend is the worst form of emotional distress, far worse than loosing a loved one. Why? We put a lot of store into those very few friends we have. We invest a lot of time in them, if they respond well to us, and over time may share a lot of personal stuff. Betrayal by such friends, is as I know, very very painful, and causes long term suffering. THEY - the non autistics just don't get it. And no I don't have control over everything. I am brutally honest and people hate this, I am highly focused on the things I am interested in to the exclusion of everything else, I am not interested in the lives of others, I won't probe and wait till they tell me their stuff, my bad meltdowns can't be avoided nor can the rare shut downs, I need alone time, I have acute anxiety if I don't get answers fast, I am very attentive to the needs of others,and get frustrated by their slow sometimes indifferent response, I don't need reminding of important facts once in my brain they will be there for ever, though equally I can remove facts of no relevance and have no further recollection of them, I have to manage the different senses of which eye contact is tricky. Am I mentally sub normal? No I refute that. Majority society needs to get off its high horse and recognise us autistics, for our differences.
I can relate to everything i read you wrote. I m seen as evil , aggressive and rude. When i m not exhausting my energy in sugar coating everything i wantvto say. I do suffer immensely when close confidents betrayed me. I have no one that close anymore. It s not worthed.
 

Dai

Member
I can relate to everything i read you wrote. I m seen as evil , aggressive and rude. When i m not exhausting my energy in sugar coating everything i wantvto say. I do suffer immensely when close confidents betrayed me. I have no one that close anymore. It s not worthed.
Hello Julia, probably the most difficult thing is persuading others who matter who you really are. Most people I know seem to have been brought up in comfortable homes with a loving mum and dad, and get on ok with their siblings. To have experienced like I did a conversation between my mother and one of her friends, unaware that I was behind the door listening, and she is saying to her friend, I worry about my son, because I do not think he will survive in the adult world. I was in my mid 30s then and happy with my life, and I was struck dumb. Unfortunately due to my inability to process information, I continued into the room and said hello to everyone, interrupting the flow of that conversation. Processing information is always an issue, and if I respond before I process information, I am seen as rude, or aggressive, or uncaring, or stupid, or I take the wrong action and do the wrong thing. So I masked. My masking has the deepest of routes, probably started as a child, and so ingrained I don't know that I do it. This has caused its own problems as my mask has no boundaries, I use it for all ages, unmoderated according to the listener. It is just there to protect me from hurt. But this is not always the result.
 

aadap

New member

Transforming the attitudes to autism in society, autism acceptance​


My vote went with aforementioned
;from better awareness 'grows' better treatment/care and stuff like that IMO

;in that to say, - autistic-led training for professionals [ any field /paygrade ]

incorporating autistic-led training/awareness within professional training-settings, and promotion, pay grade increase ..
 

Julia28

New member
Hello Julia, probably the most difficult thing is persuading others who matter who you really are. Most people I know seem to have been brought up in comfortable homes with a loving mum and dad, and get on ok with their siblings. To have experienced like I did a conversation between my mother and one of her friends, unaware that I was behind the door listening, and she is saying to her friend, I worry about my son, because I do not think he will survive in the adult world. I was in my mid 30s then and happy with my life, and I was struck dumb. Unfortunately due to my inability to process information, I continued into the room and said hello to everyone, interrupting the flow of that conversation. Processing information is always an issue, and if I respond before I process information, I am seen as rude, or aggressive, or uncaring, or stupid, or I take the wrong action and do the wrong thing. So I masked. My masking has the deepest of routes, probably started as a child, and so ingrained I don't know that I do it. This has caused its own problems as my mask has no boundaries, I use it for all ages, unmoderated according to the listener. It is just there to protect me from hurt. But this is not always the result.
I resonate. I m just too burnt out to mask it. Good thing i dont go anywhere and have si little interactions. Probabilities to offend are minimized. I guess lockdown does me a favour... ( being funny in this above)... its funny cuz its true. I guess. Thank you for sharing!
 
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