I've been a bit surprised at how little AS people are actually involved in the service and it also seems that there's very little ongoing support for AS adults

here seems to be very little involvement on the part of AS people in defining the service.This might be partly as it started off as a service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.

Very much so. 

Thee is very limited scope to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

In terms of services, I haven't been offered anything at all, so I think there is a lot of scope.  lol

I think there is a real niche in UK, a need for autistic adult self advocacy organisation that is distinct from education agenda and from other professional people around autism who are not autistic themselves. It could be a brunch of NAS or a sister organisation. I think NAS is great in many ways and does essential work and services. But they are not set up to do certain niche things. I think they have one focus campaign at a time.

In US the Autistic Self Advocacy Network (ASAN) established the important aim, the famous 'Nothing about us without us'. They are effective in getting autistic people a voice, lobbying the government and to offer an alternative agenda to to the powerful parent lead big organisation. I am not sure there is a clear national autistic voice like this in UK. Yes, there are advocates, but they are a little fragmented and work privately for individuals.  

 An Autistic self advocacy space/organisation, I think there should be a virtual space, an open process, a forum for autistic adults to suggest and discuss  priorities and input, set the agenda. There is no open national 'space' like this for the moment.

I think some of the things that need addressing are:

• Access and support with employment - see below
• Support in relationships - see below, not based on autism hate groups
• Ethics of genetic research into autism. I read articles that ethics i any autism research are 'weak', maybe it's time to strengthen them.
• Use of language about autism.(broad based, beyond autistic/with autism) 
• Autism hate speech and harmful content online about autism. Example - concerted campaign to invalidate Greta Thunberg based on her autism, her face, her eye, her 'lack of empathy'. Advocating to or depriving autistic people from their freedom of speech based on their autism should not be normalised.
• Equal justice = disability hate crimes are not covered by the same laws as racial hate crimes, this makes them toothless.

Resources:

1. Pinned threads, thematic guest presentations, interactive Q&As
2. 1:1 online advice or forum advice
3. People could volunteer to lead o this or that support to other members, peer to peer support

Support:

1. Support for people, including HFA into employment, not means tested, not only for families on benefits. People wasting their talents at home and going through circles of depression are more expensive to society than people who are having fulfilling work and paying taxes.
2. Employment mentoring and coaching, aiming to also help people in professional and managerial roles to cope and retain  their highly skilled employment. Like business mentors and career coaches, but autism focussed. Too many people here are managers and engineers hopping from job to job, ending up in lower skilled  roles. They could even be fee based to those who can afford. It is not like Access to Work, about paying for reasonable adjustments, but about personal effectiveness coaching for coping and getting acceptance in those managerial occupations, it should be 1:1 for the person,, not dependent on the employer like axess to work, it should not require disclosure and formal dx.
3. Mental health support and  counselling services for family members, family therapy, relationship counselling and coaching. Not based on models promoted by some autism hate groups, but based on the double empathy model and using ethical counselling.

Research

1. Why people are bullied, discriminated at work, why disclosure often leads to dismissal? What would normalise acceptance in workplace?
2. How to bring teanagers with MH breakdown back into health, studying and being productive?
3. High quality ethical research into the relationships and marriage, based on the non ableist model of the relationship and double empathy gap. Assessing and understanding both partners focussing on making better communication, better connection. 

This is a draft document on the services, people can comment on it, they can copy it into a new message and edit it, make suggestions, additions, deletions. [it does not include yet latest from Lagrangian as I was writing, to be added]

It is an attempt at collaborative working.

Formatting: I will use italic for comments

If we could design it ourselves, what would AS services look like?

Introduction

It is estimated that about 1 in 100 people in the general population are on the autism spectrum. This means that there are potentially XXX adults in the UK. Many of them are not diagnosed, many are in the process of getting a diagnosis. It is the experience of many autistic people diagnosed i adulthood that:

• Access to diagnosis is patchy and there is low awareness of autism diagnosis services
• Current resources are not good enough to meet the demand
• Given that waiting times can be 2-3 years in some regions to get an assessment, many people are in need of support pre-diagnosis before they reach a crisis point. 
• There's very little ongoing support for AS adults, especially for those who appear to be higher functioning or are older
• Access to support is limited by means testing leaving many adults without the support they need
• Access to support is limited to the Mental Health support pathways, no support outside MH services
• Support system is like a regional lottery
• There seems to be very little involvement on the part of AS people in defining the services they need
• NAS service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.
• We don't get 'invited to the table' of setting the agenda for support services and scientific research
• People often feel they are not being taken seriously
• AS people feeling not listened to by professionals, being fit into the limited services made available, designed by non autistic people and not listening to actually autistic people about what services they actually need
• Thee is very limited scope to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

What would AS services look like?

Holistic, integrated, preventative, life long

National framework, no post code lottery and variation

Defined and designed by autistic people

Based on progressive vision of autism, social model of disability, autism acceptance

Supporting personal growth and life skills as defined by autistic people themselves, support and coaching in coping with autism in achieving life goals.

Support for health needs, for the entire family, for employment, aging, housing.

Life skills defined individually in broad and flexible terms by autistic individuals. For some it is taking a bus, for others it is avoiding fall into depression, starting a family, or even retaining their job in professional capacity.. 

What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?

The need for an open national Autistic Self Advocacy organisation that would provide a forum, an open process for autistic adults to discuss priorities and needs and provide a voice, at a national scale that is distinct from the parents organisations and the voice of professionals working in autism,which would enables to discuss and  focus on issues important for autistic people, but not yet covered by existing structures. Also a space and process for autistic people to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

It could be a brunch of NAS or an independent organisation. NAS is great in many ways and does essential work and services. But they are not set up to do all things, niche things. There is a scope for an additional self advocacy and peer to peer support organisation that could cover autistic needs and priorities for which NAS has no capacity.

Some of the things that need addressing are:

• Access and support with employment - see below
• Support in relationships - see below, not based on autism hate groups

• Training professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people.

• Ethics of genetic research into autism. I read articles that ethics i any autism research are 'weak', maybe it's time to strengthen them.

• Use of language about autism.(broad based, beyond autistic/with autism) 'Nothing about us without us'. 
• Autism hate speech and harmful content online about autism. Example - concerted campaign to invalidate Greta Thunberg based on her autism, her face, her eye, her 'lack of empathy'. Advocating to or depriving autistic people from their freedom of speech based on their autism should not be normalised.
• Equal justice = disability hate crimes are not covered by the same laws as racial hate crimes, this makes them toothless.

Directions of service development

An online forum

1. Resources, summarised as tailored help to navigate the law, health, my mental health and dealing with service providers. 
2. Pinned threads, thematic guest presentations, interactive Q&As
3. 1:1 online advice functionality or forum advice, private group discussion functionality
4. People could volunteer to lead on this or that support to other members, peer to peer support
5. Virtual social groups by topics and interests, like byking, 
6. Improved functionality, experience and security

Support:

1. It should be holistic. The holistic approach to health needs and life skills, family support, personal development. all the services integrated better. Psychologists, psychiatrists and developmental disorder services, 1:1 support, life skills coaching, family support, employment, social care, housing.  The probable pattern within my family is undiagnosed autism followed by years of difficulties then initial contact with services due to related problems (depression, anxiety, OCD, psychosis) which are picked up as if they've suddenly come out of nowhere.  When really I think the undiagnosed autism with no awareness, insight, support or help was the soil on which all of the other issues grew.'
   
   
2. Start to address the underlying difficulty of autistic people - support their personal development and life coaching in attaining their goals.Professionals to guide us of all ages to develop, be independent as possible (which is probably individual). Support individual development. Train professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people, process what is actually said.
   
   
3. A national service framework for autism, like the one for older people. Care needs to be standardised throughout the Uk, autistic people need to be recognised as having as many differences between us as NTs at the moment we all seem to get lumped into the same mould for garnering all of this support . There should not be post code lottery, national standards that we can expect will be adhered to from assessment to diagnosis and beyond. 
   
   
4. Some service to help with symptom management [for co-occurring conditions?]. Because I have to put a lot of effort every day into symptom management and sometimes its stuff that I don't really want to blurt out on this forum. But there is nothing! So I keep on doing my own research and coming up with random ways to manage symptoms. Actually one day I might post my combined ASD/ABI guide to managing symptoms on here just to amuse people with some of the really random stuff that I come up with. But hey, if it works it works, right?'
   
   
5. Support for people, including HFA into employment, not means tested, not only for families on benefits. People wasting their talents at home and going through circles of depression are more expensive to society than people who are having fulfilling work and paying taxes. Every large employer should have a link person who is an advocate for autistic adults who could also cascade train their teams where needed, much as in nursing we have link nurses who specialise in say, diabetes or palliative care and cascade any new info to the rest of the team.
   
   
6. Employment mentoring and coaching, aiming to also help people in professional and managerial roles to cope and retain  their highly skilled employment. Like business mentors and career coaches, but autism focussed. Too many people here are managers and engineers hopping from job to job, ending up in lower skilled  roles. They could even be fee based to those who can afford. It is not like Access to Work, about paying for reasonable adjustments, but about personal effectiveness coaching for coping and getting acceptance in those managerial occupations, it should be 1:1 for the person,, not dependent on the employer like axess to work, it should not require disclosure and formal dx.
   
   
7. Mental health support, diagnosis and  counselling services for family members, family therapy, relationship counselling and coaching. Not based on models promoted by some autism hate groups, but based on the double empathy model and using ethical counselling. I'd like to see a 'buddy' system where NT's are trained in communicating with AS people and can give advice on handling NT's in one's life (work and personal) .
   
   
8. Signposting. Continuous 'hand-holding'. A co-ordinator to act as a kind of hub for me and signpost me, reliably and promptly, to services that can help with my specific needs.  This co-ordinator should have been assigned as soon as autism was mooted, and seen me through the whole assessment process, advising and drawing on other services as we went along.   A detailed, agreed plan would help.  
   
   
9. Psychological support:  Individually tailored psychological support involving a detailed assessment and formulation of my issues,t he maintaining causes and a collaboratively constructed way forward.  The support MUST be informed by autism awareness and NOT off the peg
   
   
10. Family support:  For me autism is a family issue and once one person is diagnosed, others should have the offer of assessment straight away.  In our case it's clearly also affected the family dynamics in anumber of ways so this should be recognised and acted upon.  Too many individual issues dealt with by separate departments, with no autism awareness and no joining the dots.
    
    
11. Another resource that I would like to have would be life skills development summer camps. They have a lot of these summer camps for AS children and teenagers in the U.S., but there aren't many for adults. It would be very useful to be able to attend a 2-week summer camp, where they can teach some basic life skills and provide some team-bonding training. It would be a great way to make friends and learn skills.
    
    
12.  Ideally there should be support groups in every area, separate from social groups. These should be run but someone from the local autism services and should perhaps cover a different topic that people diagnosed with AS as adults may be struggling with. Even if they only ran once a month, it would be good to have the option to be able to go along, learn new information, meet other adults newly diagnosed with AS and swap ideas with both them and the person running the group.

Research

1. Why people are bullied, discriminated at work, why disclosure often leads to dismissal? What would normalise acceptance in workplace?
2. How to bring teanagers with MH breakdown back into health, studying and being productive?
3. High quality ethical research into the relationships and marriage, based on the non ableist model of the relationship and double empathy gap. Assessing and understanding both partners focussing on making better communication, better connection. 

Tinyexplorer said:

make suggestions, additions, deletions. [it does not include yet latest from Lagrangian as I was writing, to be added]

It is an attempt at collaborative working.

Formatting: I will use italic for comments

If we could design it ourselves, what would AS services look like?

Introduction

It is estimated that about 1 in 100 people in the general population are on the autism spectrum. This means that there are potentially XXX adults in the UK. Many of them are not diagnosed, many are in the process of getting a diagnosis. It is the experience of many autistic people diagnosed i adulthood that:

• Access to diagnosis is patchy and there is low awareness of autism diagnosis services
• Current resources are not good enough to meet the demand
• Given that waiting times can be 2-3 years in some regions to get an assessment, many people are in need of support pre-diagnosis before they reach a crisis point. 
• There's very little ongoing support for AS adults, especially for those who appear to be higher functioning or are older
• Access to support is limited by means testing leaving many adults without the support they need
• Access to support is limited to the Mental Health support pathways, no support outside MH services
• Support system is like a regional lottery
• There seems to be very little involvement on the part of AS people in defining the services they need
• NAS service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.
• We don't get 'invited to the table' of setting the agenda for support services and scientific research
• People often feel they are not being taken seriously
• AS people feeling not listened to by professionals, being fit into the limited services made available, designed by non autistic people and not listening to actually autistic people about what services they actually need
• Thee is very limited scope to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

What would AS services look like?

Holistic, integrated, preventative, life long

National framework, no post code lottery and variation

Defined and designed by autistic people

Based on progressive vision of autism, social model of disability, autism acceptance

Supporting personal growth and life skills as defined by autistic people themselves, support and coaching in coping with autism in achieving life goals.

Support for health needs, for the entire family, for employment, aging, housing.

Life skills defined individually in broad and flexible terms by autistic individuals. For some it is taking a bus, for others it is avoiding fall into depression, starting a family, or even retaining their job in professional capacity.. 

What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?

The need for an open national Autistic Self Advocacy organisation that would provide a forum, an open process for autistic adults to discuss priorities and needs and provide a voice, at a national scale that is distinct from the parents organisations and the voice of professionals working in autism,which would enables to discuss and  focus on issues important for autistic people, but not yet covered by existing structures. Also a space and process for autistic people to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

It could be a brunch of NAS or an independent organisation. NAS is great in many ways and does essential work and services. But they are not set up to do all things, niche things. There is a scope for an additional self advocacy and peer to peer support organisation that could cover autistic needs and priorities for which NAS has no capacity.

Some of the things that need addressing are:

• Access and support with employment - see below
• Support in relationships - see below, not based on autism hate groups
• Training professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people.
• Ethics of genetic research into autism. I read articles that ethics i any autism research are 'weak', maybe it's time to strengthen them.
• Use of language about autism.(broad based, beyond autistic/with autism) 'Nothing about us without us'. 
• Autism hate speech and harmful content online about autism. Example - concerted campaign to invalidate Greta Thunberg based on her autism, her face, her eye, her 'lack of empathy'. Advocating to or depriving autistic people from their freedom of speech based on their autism should not be normalised.
• Equal justice = disability hate crimes are not covered by the same laws as racial hate crimes, this makes them toothless.

Directions of service development

An online forum

1. Lay out : there needs to be a clear, concise area where people can go to be the single point of access to all things wrt our condition (diagnosed and undiagnosed) to help rather than having to search for the right/wrong keyword on the internet/forums.  
2. Resources, summarised as tailored help to navigate the law, health, my mental health and dealing with service providers. 
3. Pinned threads, thematic guest presentations, interactive Q&As
4. 1:1 online advice functionality or forum advice, private group discussion functionality
5. People could volunteer to lead on this or that support to other members, peer to peer support
6. Virtual social groups by topics and interests, like byking, 
7. Improved functionality, experience and security

Support:

1. It should be holistic. The holistic approach to health needs and life skills, family support, personal development. all the services integrated better. Psychologists, psychiatrists and developmental disorder services, 1:1 support, life skills coaching, family support, employment, social care, housing.  The probable pattern within my family is undiagnosed autism followed by years of difficulties then initial contact with services due to related problems (depression, anxiety, OCD, psychosis) which are picked up as if they've suddenly come out of nowhere.  When really I think the undiagnosed autism with no awareness, insight, support or help was the soil on which all of the other issues grew.'
2. Start to address the underlying difficulty of autistic people - support their personal development and life coaching in attaining their goals.Professionals to guide us of all ages to develop, be independent as possible (which is probably individual). Support individual development. Train professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people, process what is actually said.
3. A national service framework for autism, like the one for older people. Care needs to be standardised throughout the Uk, autistic people need to be recognised as having as many differences between us as NTs at the moment we all seem to get lumped into the same mould for garnering all of this support . There should not be post code lottery, national standardsthat we can expect will be adhered to from assessment to diagnosis and beyond. 
4. Some service to help with symptom management [for co-occurring conditions?]. Because I have to put a lot of effort every day into symptom management and sometimes its stuff that I don't really want to blurt out on this forum. But there is nothing! So I keep on doing my own research and coming up with random ways to manage symptoms. Actually one day I might post my combined ASD/ABI guide to managing symptoms on here just to amuse people with some of the really random stuff that I come up with. But hey, if it works it works, right?'
5. Support for people, including HFA intoemployment, not means tested, not only for families on benefits. People wasting their talents at home and going through circles of depression are more expensive to society than people who are having fulfilling work and paying taxes. Every large employer should have a link person who is an advocate for autistic adults who could also cascade train their teams where needed, much as in nursing we have link nurses who specialise in say, diabetes or palliative care and cascade any new info to the rest of the team.
6. Employment mentoring and coaching, aiming to also help people in professional and managerial roles to cope and retain  their highly skilled employment. Like business mentors and career coaches, but autism focussed. Too many people here are managers and engineers hopping from job to job, ending up in lower skilled  roles. They could even be fee based to those who can afford. It is not like Access to Work, about paying for reasonable adjustments, but about personal effectiveness coaching for coping and getting acceptance in those managerial occupations, it should be 1:1 for the person,, not dependent on the employer like axess to work, it should not require disclosure and formal dx.
7. Mental health support, diagnosisand  counselling services for family members, family therapy, relationship counselling and coaching. Not based on models promoted by some autism hate groups, but based on the double empathy model and using ethical counselling. I'd like to see a 'buddy' system where NT's are trained in communicating with AS people and can give advice on handling NT's in one's life (work and personal) .
8. Signposting. Continuous 'hand-holding'. A co-ordinatorto act as a kind of hub for me and signpost me, reliably and promptly, to services that can help with my specific needs.  This co-ordinator should have been assigned as soon as autism was mooted, and seen me through the whole assessment process, advising and drawing on other services as we went along.   A detailed, agreed plan would help.  
9. Psychological support:  Individually tailored psychological support involving a detailed assessment and formulation of my issues,t he maintaining causes and a collaboratively constructed way forward.  The support MUST be informed by autism awareness and NOT off the peg
10. Family support:  For me autism is a family issue and once one person is diagnosed, others should have the offer of assessment straight away.  In our case it's clearly also affected the family dynamics in a number of ways so this should be recognised and acted upon.  Too many individual issues dealt with by separate departments, with no autism awareness and no joining the dots.
11. Another resource that I would like to have would be life skills development summer camps. They have a lot of these summer camps for AS children and teenagers in the U.S., but there aren't many for adults. It would be very useful to be able to attend a 2-week summer camp, where they can teach some basic life skills and provide some team-bonding training. It would be a great way to make friends and learn skills.
12. Ideally there should be support groups in every area, separate from social groups. These should be run but someone from the local autism services and should perhaps cover a different topic that people diagnosed with AS as adults may be struggling with. Even if they only ran once a month, it would be good to have the option to be able to go along, learn new information, meet other adults newly diagnosed with AS and swap ideas with both them and the person running the group.

Research

1. Why people are bullied, discriminated at work, why disclosure often leads to dismissal? What would normalise acceptance in workplace?
2. How to bring teenagers with MH breakdown back into health, studying and being productive?
3. High quality ethical research into the relationships and marriage, based on the non-ableist model of the relationship and double empathy gap. Assessing and understanding both partners focussing on making better communication, better connection. 

Tinyexplorer said:

make suggestions, additions, deletions. [it does not include yet latest from Lagrangian as I was writing, to be added]

It is an attempt at collaborative working.

Formatting: I will use italic for comments

If we could design it ourselves, what would AS services look like?

Introduction

It is estimated that about 1 in 100 people in the general population are on the autism spectrum. This means that there are potentially XXX adults in the UK. Many of them are not diagnosed, many are in the process of getting a diagnosis. It is the experience of many autistic people diagnosed i adulthood that:

• Access to diagnosis is patchy and there is low awareness of autism diagnosis services
• Current resources are not good enough to meet the demand
• Given that waiting times can be 2-3 years in some regions to get an assessment, many people are in need of support pre-diagnosis before they reach a crisis point. 
• There's very little ongoing support for AS adults, especially for those who appear to be higher functioning or are older
• Access to support is limited by means testing leaving many adults without the support they need
• Access to support is limited to the Mental Health support pathways, no support outside MH services
• Support system is like a regional lottery
• There seems to be very little involvement on the part of AS people in defining the services they need
• NAS service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.
• We don't get 'invited to the table' of setting the agenda for support services and scientific research
• People often feel they are not being taken seriously
• AS people feeling not listened to by professionals, being fit into the limited services made available, designed by non autistic people and not listening to actually autistic people about what services they actually need
• Thee is very limited scope to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

What would AS services look like?

Holistic, integrated, preventative, life long

National framework, no post code lottery and variation

Defined and designed by autistic people

Based on progressive vision of autism, social model of disability, autism acceptance

Supporting personal growth and life skills as defined by autistic people themselves, support and coaching in coping with autism in achieving life goals.

Support for health needs, for the entire family, for employment, aging, housing.

Life skills defined individually in broad and flexible terms by autistic individuals. For some it is taking a bus, for others it is avoiding fall into depression, starting a family, or even retaining their job in professional capacity.. 

What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?

The need for an open national Autistic Self Advocacy organisation that would provide a forum, an open process for autistic adults to discuss priorities and needs and provide a voice, at a national scale that is distinct from the parents organisations and the voice of professionals working in autism,which would enables to discuss and  focus on issues important for autistic people, but not yet covered by existing structures. Also a space and process for autistic people to contribute, get heard and get involved, there is no space and process for listening and for trying to organise something that NAS has no time or funding for. Autistic people can do a lot to support each other and basically themselves, but we need some structure and support for that..

It could be a brunch of NAS or an independent organisation. NAS is great in many ways and does essential work and services. But they are not set up to do all things, niche things. There is a scope for an additional self advocacy and peer to peer support organisation that could cover autistic needs and priorities for which NAS has no capacity.

Some of the things that need addressing are:

• Access and support with employment - see below
• Support in relationships - see below, not based on autism hate groups
• Training professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people.
• Ethics of genetic research into autism. I read articles that ethics i any autism research are 'weak', maybe it's time to strengthen them.
• Use of language about autism.(broad based, beyond autistic/with autism) 'Nothing about us without us'. 
• Autism hate speech and harmful content online about autism. Example - concerted campaign to invalidate Greta Thunberg based on her autism, her face, her eye, her 'lack of empathy'. Advocating to or depriving autistic people from their freedom of speech based on their autism should not be normalised.
• Equal justice = disability hate crimes are not covered by the same laws as racial hate crimes, this makes them toothless.

Directions of service development

An online forum

1. Lay out : there needs to be a clear, concise area where people can go to be the single point of access to all things wrt our condition (diagnosed and undiagnosed) to help rather than having to search for the right/wrong keyword on the internet/forums.  
2. Resources, summarised as tailored help to navigate the law, health, my mental health and dealing with service providers. 
3. Pinned threads, thematic guest presentations, interactive Q&As
4. 1:1 online advice functionality or forum advice, private group discussion functionality
5. People could volunteer to lead on this or that support to other members, peer to peer support
6. Virtual social groups by topics and interests, like byking, 
7. Improved functionality, experience and security

Support:

1. It should be holistic. The holistic approach to health needs and life skills, family support, personal development. all the services integrated better. Psychologists, psychiatrists and developmental disorder services, 1:1 support, life skills coaching, family support, employment, social care, housing.  The probable pattern within my family is undiagnosed autism followed by years of difficulties then initial contact with services due to related problems (depression, anxiety, OCD, psychosis) which are picked up as if they've suddenly come out of nowhere.  When really I think the undiagnosed autism with no awareness, insight, support or help was the soil on which all of the other issues grew.'
2. Start to address the underlying difficulty of autistic people - support their personal development and life coaching in attaining their goals.Professionals to guide us of all ages to develop, be independent as possible (which is probably individual). Support individual development. Train professionals on a progressive non limiting model of ASD to respond to the needs of autistic people and support them in their coping. personal development and fulfilment of their life goals. Professionals who understand ASD and actually listen to autistic people, process what is actually said.
3. A national service framework for autism, like the one for older people. Care needs to be standardised throughout the Uk, autistic people need to be recognised as having as many differences between us as NTs at the moment we all seem to get lumped into the same mould for garnering all of this support . There should not be post code lottery, national standardsthat we can expect will be adhered to from assessment to diagnosis and beyond. 
4. Some service to help with symptom management [for co-occurring conditions?]. Because I have to put a lot of effort every day into symptom management and sometimes its stuff that I don't really want to blurt out on this forum. But there is nothing! So I keep on doing my own research and coming up with random ways to manage symptoms. Actually one day I might post my combined ASD/ABI guide to managing symptoms on here just to amuse people with some of the really random stuff that I come up with. But hey, if it works it works, right?'
5. Support for people, including HFA intoemployment, not means tested, not only for families on benefits. People wasting their talents at home and going through circles of depression are more expensive to society than people who are having fulfilling work and paying taxes. Every large employer should have a link person who is an advocate for autistic adults who could also cascade train their teams where needed, much as in nursing we have link nurses who specialise in say, diabetes or palliative care and cascade any new info to the rest of the team.
6. Employment mentoring and coaching, aiming to also help people in professional and managerial roles to cope and retain  their highly skilled employment. Like business mentors and career coaches, but autism focussed. Too many people here are managers and engineers hopping from job to job, ending up in lower skilled  roles. They could even be fee based to those who can afford. It is not like Access to Work, about paying for reasonable adjustments, but about personal effectiveness coaching for coping and getting acceptance in those managerial occupations, it should be 1:1 for the person,, not dependent on the employer like axess to work, it should not require disclosure and formal dx.
7. Mental health support, diagnosisand  counselling services for family members, family therapy, relationship counselling and coaching. Not based on models promoted by some autism hate groups, but based on the double empathy model and using ethical counselling. I'd like to see a 'buddy' system where NT's are trained in communicating with AS people and can give advice on handling NT's in one's life (work and personal) .
8. Signposting. Continuous 'hand-holding'. A co-ordinatorto act as a kind of hub for me and signpost me, reliably and promptly, to services that can help with my specific needs.  This co-ordinator should have been assigned as soon as autism was mooted, and seen me through the whole assessment process, advising and drawing on other services as we went along.   A detailed, agreed plan would help.  
9. Psychological support:  Individually tailored psychological support involving a detailed assessment and formulation of my issues,t he maintaining causes and a collaboratively constructed way forward.  The support MUST be informed by autism awareness and NOT off the peg
10. Family support:  For me autism is a family issue and once one person is diagnosed, others should have the offer of assessment straight away.  In our case it's clearly also affected the family dynamics in a number of ways so this should be recognised and acted upon.  Too many individual issues dealt with by separate departments, with no autism awareness and no joining the dots.
11. Another resource that I would like to have would be life skills development summer camps. They have a lot of these summer camps for AS children and teenagers in the U.S., but there aren't many for adults. It would be very useful to be able to attend a 2-week summer camp, where they can teach some basic life skills and provide some team-bonding training. It would be a great way to make friends and learn skills.
12. Ideally there should be support groups in every area, separate from social groups. These should be run but someone from the local autism services and should perhaps cover a different topic that people diagnosed with AS as adults may be struggling with. Even if they only ran once a month, it would be good to have the option to be able to go along, learn new information, meet other adults newly diagnosed with AS and swap ideas with both them and the person running the group.

Research

1. Why people are bullied, discriminated at work, why disclosure often leads to dismissal? What would normalise acceptance in workplace?
2. How to bring teenagers with MH breakdown back into health, studying and being productive?
3. High quality ethical research into the relationships and marriage, based on the non-ableist model of the relationship and double empathy gap. Assessing and understanding both partners focussing on making better communication, better connection.