What is the 1 st most important priority for our 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!

 

[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.

 

[ceejaytee]

I chose advocacy because my self view is marred by shame and feeling like a burden and other negative self reflections amplify my neurodivergent experience to unbearable often times. With advocacy I could learn self acceptance. I could be myself and discover how to embrace the other multifaceted aspects of my being. Grounding in my own reality along with confidence in my own voice. Feeling like a valuable human as I am. The self acceptance mentor mentee tools/experience you have created here could become templates for a peer support advocacy blueprint within local NHS mental health/post diagnostic support standards.

 

[Jacqui]

Self acceptance - huge issue for me. At 77 my overwhelming sense of failure at life. Looking back at all the situations I got into because I missed cues and signals is depressing me. I feel distant from my grown children. I'm reading Philippa Perry's book on parenting which has depressed me even more. I'm not sure anything can repair the mistakes I made.
Sorry I'm just venting because I have nowhere else to vent.

 

[Layla]

I understand how you feel I feel similar I’m 62 and only diagnosed 2 years ago but so many things make sense now. We have found out late in life but think of those gone before us that struggled through life never knowing why. All the best to you

 

[Jacqui]

Thank you! You reminded me of my mothers struggles. I strongly suspect my mother was asd1. She had a successful career but seemed to think if she put food on the table and clothes on our backs it was enough. All 3 of us children suffered from a sort of emotional neglect. My mother died feeling unloved despite her best efforts at providing for the 3 of us on her own. Her marriage was a disastrous 8 yrs which produced 3 children and a lot of unhappiness. She lived at a time having any sort of career was extremely difficult and for many years she was paid 30% less than her male colleague. Now I can appreciate how hard she worked and how in her own way she did love us....we just didn't see it.

 

[IrishInManchesterUK]

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 ..

I firmly believe that this can only come about through strong legislation being passed in Parliament that is properly enforced and where there are severe penalties for non-compliance, up to and including criminal prosecution and police involvement, where robust challenge and directly confronting failures must be at the heart of this - where we get from where we are now to where we need to be must be via building and taking cases via legal advice centres via sympathetic solicitors and barristers before the courts with as much media attention as possible and being relentless in pushing for judicial reviews with a view to legislative change, refusing all our of court settlements and compensation, in all cases pushing for all legal costs awarded against the state, especially given that they are breaking existing laws by claiming “lack of funds” as a legal defence for consistent failures due to lack of proper law enforcement and lack of criminal prosecution and police involvement for non-compliance - citizens advice centres already have cases on their books that should already be before the courts - all we get at the moment is a long litany of lame excuses for failures which must be robustly challenged in the courts and in Parliament through properly enforced laws being passed - the current situation is totally unacceptable

 

[IrishInManchesterUK]

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 ..

There is totally no excuse for the current corrupt situation and everything that you have just written here and elsewhere is basic legal standards, non-compliance with which should become the basis of a criminal prosecution and police involvement against the provider - these failures in all cases must be robustly challenged as must the corruption behind these failures, which must be exposed - we already know of the mismanagement and wastage within the NHS and where “lack of funding” is used as a legal defence for failure to comply with existing laws on the part of providers - there must be zero tolerance, zero patience, zero exceptions and zero excuses for all such failures

 

[IrishInManchesterUK]

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

This can only be achieved through strong and properly enforced legislation being passed in Parliament with severe penalties for non-compliance, including but not limited to criminal prosecutions and police involvement - because providers are already breaking existing laws, using as an excuse the legal defence of “lack of funding” these cases must be brought before the courts in front of juries and with as much media attention as possible, strong cases being built by supportive solicitors and barristers, the refusal of all out of court settlements and other compensation, in all cases pushing for legal costs being awarded against the state and in all cases, relentlessly pushing for judicial reviews with a view to legislative changes - the inherent corruption behind many of these cases must be exposed by way of robust challenge in every way and at every level, as there are strong ethical and moral principles behind this - there are decades-long cases of mismanagement and corruption that have went unchallenged by those who should have been held criminally accountable decades ago - the current situation is doubly unacceptable in the post-Covid era

 

[Loubie]

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

Hi,

I have just been diagnosed with fibromyalgia and am also hypermobile (hEDS). It was a curveball, any tips on management of fibromyalgia please? Support seems to be lacking. I see you have a pain specialist, was that private or your local NHS offering?

I am also an AuDHD mum to a child who has mental health issues. While battling my own. It's tough. You're not alone.

Wishing you well.

Thanks
Laura