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

[Rosapurple]

I think the story of autism as it is currently told doesn't help autistic people to get into desirable jobs and retain their employment. The deficit model is getting in the way of appreciating our talents. The story should not be about deficits, but about different processing, neurodiversity informed so we could put forward out strengths. We need to shift the discourse away from the deficit model towards a difference and emphasise our human traits and strong points. So for me changing attitudes to autism in society is the most important priority.

 

[BlackAutistics]

I would like to see the development of Autism specialist mental health therapies for adults on the spectrum. Our neurodevelopmental and cognitive health needs need to be catered to pre and post diagnosis. It is not enough to be told our needs are too specialist for general mental health support and be left with no specialist service commissioning in our regions.

 

[Margot]

I would like to see the development of Autism specialist mental health therapies for adults on the spectrum. Our neurodevelopmental and cognitive health needs need to be catered to pre and post diagnosis. It is not enough to be told our needs are too specialist for general mental health support and be left with no specialist service commissioning in our regions.

Have you hear of Psychobiological Approach [to Couple Therapy] PACT? It is developed in the context of couple therapy, but the neurological approach is spot on for autistic people. It is about understanding how our neurology and body state affects our ability to respond to other people. In my personal experience it really helps.

 

[Adventurous Aspie]

If NTs understood and accepted autistics for who we are, that would make a hugely positive difference for us in the other areas listed above (transitions, employment, relationships, and mental health and wellbeing). So I think understanding and acceptance has to be the starting point. That said, we also need to drive government and organisations to commit to fulfilling our needs, and to impress upon them the urgency of doing so.

 

[Hannah1]

Relationships

 

[Margot]

Hannah, please cast your vote in the poll above.

 

[Pattern-chaser]

I have to admit I'm a bit confused by this sequence of topics. I understand that you want to know the priorities of autistic people, but to ask "which is the 4th most important" separately from "which is the 2nd most important" (etc) just confuses me. In which topic should I post my response(s)?

 

[Margot]

I'm a bit confused by this sequence of topics

I understand, sorry, but I didn't figure out how to do it differently. Please try going with it and cast your vote in every question. You could post comments in here or in every poll thread?

 

[Deleted member 158]

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[Dai]

So much of my life seems to have been unfavourably affected by the attitudes of others towards me. As a child things happen and you accept them, but only once the responsibilities of adulthood start to bite one discovers past traumas, Each of these issues have to be discovered and unravelled. I think they are far worse than Autism or Aspergers - it is how others have treated us exploiting our different approaches to life, and abusing us in different ways. The key issue for me took several years to work out - and was covered by the term complex trauma. Once unravelled that was like the umbrella over all mental health issues!!

 

[Margot]

it is how others have treated us exploiting our different approaches to life, and abusing us in different ways

Dai, I am sorry to hear you had trauma.
I had trauma after severe bullying at school, and more recently at work and that takes a long time to recover from.

 

[Turiya]

So much of my life seems to have been unfavourably affected by the attitudes of others towards me. As a child things happen and you accept them, but only once the responsibilities of adulthood start to bite one discovers past traumas, Each of these issues have to be discovered and unravelled. I think they are far worse than Autism or Aspergers - it is how others have treated us exploiting our different approaches to life, and abusing us in different ways. The key issue for me took several years to work out - and was covered by the term complex trauma. Once unravelled that was like the umbrella over all mental health issues!!

interesting point. I’ve just had a psychiatric assessment and was told my “problem” is trauma, and that all neurodiversity presents in the same way as the effects of trauma. I wasn’t sure what to think of that. Could you tell us (me) what specific therapy route you took to deal with your complex trauma please? Thanks.

 

[Dai]

interesting point. I’ve just had a psychiatric assessment and was told my “problem” is trauma, and that all neurodiversity presents in the same way as the effects of trauma. I wasn’t sure what to think of that. Could you tell us (me) what specific therapy route you took to deal with your complex trauma please? Thanks.

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.

 

[Dai]

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

 

[Buttercup]

Thank you Dai for your persistence in loading up relevant documents to the Complex Trauma approach. So good to hear that you are find you are being listened to which in turn allowed you to identify Complex Trauma as a kind of meta umbrella. Your contribution to this forum has made me join

I heard that autistic cognitive patterns can lead, when transitioning into young adulthood, to negative/traumatic experiences to light up like a chain of fairy lights. So somebody who, for example, used to enjoy snow boarding will at some point experience a cumulative effect of many negative happenings encountered during that activity (discomfort due to wet gloves getting wet occasionally, long ski lift queue amongst loud people etc). This is like a switch, once flicked, the negative fairy light chain lights up and none of the positive experiences (enjoyment of speed downhill for example) will be 'illuminated' in the brain to temper/balance the fact that during the performance of this activity some enjoyable experiences happened as well.
It is very interesting that you feel that as a child 'things happen and you accept them'

 

[Rhiarti]

This is like a switch, once flicked, the negative fairy light chain lights up and none of the positive experiences (enjoyment of speed downhill for example) will be 'illuminated' in the brain to temper/balance the fact that during the performance of this activity some enjoyable experiences happened as well.

Oh wow. I've so often thought back to things I used to enjoy, or even just things I used to not mind, and wondered why I struggle/suffer with them so much now. That's a really helpful explanation. Thank you!

 

[feesable]

it's not in your list, but i think the MOST important thing in autism policy is coproduction - having autistic voices at the heart of the decision making process about our lives.

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 25View attachment 26
• View attachment 26

 

[Dai]

Its quite difficult trying to work out what is important in delivering new services to autistic adults. The human brain is highly adaptive, and one learns to manage ones life within ones limitations and advantages. I dpn't think Neurotypicals "get it" and never will. For example I am having to deal with a vicar, who is so insensitive I often find myself thinking the man is in the wrong job. He's hiding behind a clergyman's collar pretending to love Jesus and encourage us to love Jesus also, whilst regularly driving me into panic attacks and anxiety, with what I can only see as his persistent nastiness devoid of any understanding of what it is to be autistic. I can't get it through to him. I really fear my next meeting ( which I am doing everything to avoid) when I think I will simply resort to my worst characteristic of autistic bluntness, when I will tell him he's chosen the wrong career, he should be a car park attendant where slapping huge fines on people will give him more satisfaction!

 

[Margot]

I will tell him he's chosen the wrong career, he should be a car park attendant where slapping huge fines on people will give him more satisfaction!

Lol. Maybe you may make a presentation to the congregation in the spirit of neurodiversity and 'different, not less'.