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

[Natashanathan6]

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]

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.

 

[Julia28]

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]

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]

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]

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!

 

[WayneUtify]

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[Panda]

I feel that transforming the attitudes to autism in society would then, in turn have positive effects on the others on the list.​

 

[Turiya]

I was seeing a psycholgist for dealing with anger, and i think it was the third meeting she responded to a point I had made the previous meeting. She was French and was the first person to "see" right into my issues. Not just simple anger, but the deep ingrained defence mode response to repeated trauma. My dad was clever and yet stupid, if you can get this? Very successful in life, but blind to the psychological damage he inflicted on me. I went through childhood in a state of fear, mostly fear from his beatings, but also fear from bullies, and from those who exploited me. This French psychologist told me who the author was on the paper of complex trauma. and gave me the link to her thesis. I do have a couple of docs on the subject. Only one has uploaded - so the other may be privileged. I also read a book by Erika J Chopich & Margaret Paul, called Healing your aloneness. Quite an important book, as it deals with the child within all of us, that is still there and drives our adult behaviour, unless we do something about it.

Thank you for posting these uploads Dai. My apologies for not realising that you had. I haven’t visited this forum in ages, and perhaps didn’t get a notification to say that you had replied. I do appreciate that you made the effort to share resources. I’ll take a look at them now.

 

[Turiya]

I have found another doc which I think is very important. Work through it and see which of the listed problems you associate with.

Thank you again, for this as well.

 

[Giraffe]

Dear Margot,
It is unclear from your post that began this thread what the intended aim of this survey is. To whom for example is this information going to and for what purpose? If it is intended to create debate and connection that is one thing. Please be explicit about this if this is the case. I submit that without context that this question is assuming too many things. Some of them are: That autism policy is or could be treated as a political priority in our political system as it exists today. I offer as an example the Autism act. A (in my view) sop to quieten the demand for our needs. Why do you believe Margot or anyone else reading this post that Autism/ autistic people will be seen as a vote winner in terms of policy by a political party in out political system? The history of disabled peoples campaigning, activism and success in getting laws passed is out there to be read/ studied and or watched in films like Defiant Lives and Crip Camp. Power (NT'S) concede nothing without a demand. A demand to be effective must have power built up outside the political parties. Basically history shows that asking nicely gets very bad results. Only when we take direct action do governments take notice. Pls offer me examples of a counter case if you can find them. If you don't know what I mean by all this look into the history of Direct Action network (disabled activists) and DPAC. In a campaign you have your Aims which inform your strategy which then informs your tactics. Holding this all together is your campaigns theory of change.

What theory of change do you Margot/ NDSA propose in achieving autism being regarded as a policy worthy subject/ need? Then it's arising to the level of importance that it/we will be found space in a political schedule/ time in the houses of commons and lords for a bill to become an act. There is much more to ask about this...

 

[Giraffe]

Clicking on the attatchments offered relating to Mental Health an Wellbeing result in this:

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The requested page could not be found.

 

[united]

Biggest change is to have flexibility instead of rigidity in society. Before Covid, people were forced to work 8-5 Monday through Friday. Many unpleasant obsticles to get to work and back depending on many external faxtors, such as traffic, angry drivers, and etc.. all puts tons of sensory tolls and stress on already hypersensitive senses person. During Covid it was understood flexibility can be achieved to offer flexibility instead of rigidity in our society to prevent capacity overload on hypersensitive sense individuals. School learning curricirums are also highly ridgid, making learning hard and inflexible to a neurodiverse mind.