Sheffield adult Autistics demanding equality group.

[onewheeldave]

Sheffield adult Autistics demanding equality group.

 

Having now being diagnosed as high-functioning (previously known as aspergers) autistic for around a year, and having experienced the prejudice, arrogance and inequality of being autistic in a neurotypical world, I've decided to try and do something positive about it.

 

Personally, a big issue for me is the extreme difficulties in getting access to medical treatment, as the majority of NHS staff have either no, or an extremely distorted view, of what autism is, and, of approriate ways of dealing and communicating with autistic individuals.

 

But the same difficulties occur in the benefits system and, basically, most large scale neurotypical systems- they specifically put things in place that basically block many autistics from accessing the services they are legally entitled to.

 

The 2009 Autism Act clearly states that autistic people have a right to equality and equal access to services like the NHS and that ALL organisations have a legal duty to make 'reasonable adjustments' to ensue that autistics can access these services.

 

Certainly, the NHS, and, the benefits system, are utterly ignoring that requirment.

 

Today I bumped into a patient at my surgery being abused by the receptionist. I could clearly see that he was in an agitated state, and, that while he was raising his voice, he was presenting his case very logically, but was basically being ignored.

 

I followed him out, discovered he was autistic, gave him some advice as to how he could maybe get better results in future, and swapped numbers.

 

I would like to set up a Sheffield based group consisting of autistic adults who are sick to the back teeth of facing prejudice and insults when trying to access the medical services they are entitled to.

 

A group of people who are happy and willing to do some or all of the following-

 

1. collect actual evidence of their mistreatment at the hands of the medical, or, any other system- I can definitily contribute here, but also we can swap experiences and devise more effective ways of getting evidence

 

2. Aim to take a group legal action. The medical system is not a logical one, and it routinely fobs off autistic people, seemingly oblivious that the 2009 autism act means that it is illegal to do so. The legal system is not perfect either, but, in terms of logic and appreciation of a good, valid arguement, it's far in advance of the NHS.

 

I believe that legal action is the only way to make these organisation take their responsibilites and obligations seriously.

 

3. look into providing an informal and easy to access advocacy service i.e. for those who need support in trying to access medical treatment without the waiting times that neurotypicals find merely frustrating, but that, for many autistics, are intolerable, other members of the group could attend with them.

 

If there's interest, perhaps post on this thread, pm me your email address if you wish to be kept informed about progress and we can start to arrange a meeting.

 

If the group grows and we need to look into creating a more formal structure, I will be aiming for the constitution to specifically ensure that no neurotypical person will be able to be involved in decision making- I intend the group to be run by autistic individuals, as autistic individuals are the only ones who can appreciate what it is to be autisitc.

 

I state that knowing that it will put some off, but feel it's important that those who are interested, know my stance on that.

 

I'd be happy for neurotypicals to be present at meetings in an advocacy capacity.

 

Currently, I've got 2 other autistic individuals interested in this, so, if it sounds like something you could be into then let me know.

 

And, that's it- this thread, as far as I'm concerned, is to set up that group.

 

I will not be getting pulled into 'debates' with NT NHS apologists. I'd request that any autistic individuals also refrain from getting pulled into 'debates' with NT NHS apologists, as it will only clutter up the thread with the usual trolling.

[Annie Bynnol]

I have read your post and I am moved by your frustrations and anger- my understanding only comes from being a parent.

 

A movement created and driven by ASD people would add invaluable weight to the range of campaigns trying to promote independence through education and employment.

 

There is no medical treatment and for high functioning ASD people access to support, education, training and work placement leading to employment should be our goal.

 

I wish you well with your plan.

 

PS

I would like to thank all those people who unknowingly/knowingly, paid/unpaid, within their contact/done extra hour, spoke kindly, were a bit more patient, spoke, smiled, understood or did something.

[Bludragonfly]

Have you been in contact with Autism Plus to see what they offer?

[Dozer]

Good post, onewheeldave. I'm not eligible to join, but wish your group all the best.

[onewheeldave]

I have read your post and I am moved by your frustrations and anger- my understanding only comes from being a parent.

 

A movement created and driven by ASD people would add invaluable weight to the range of campaigns trying to promote independence through education and employment.

 

There is no medical treatment and for high functioning ASD people access to support, education, training and work placement leading to employment should be our goal.

 

I wish you well with your plan.

 

PS

I would like to thank all those people who unknowingly/knowingly, paid/unpaid, within their contact/done extra hour, spoke kindly, were a bit more patient, spoke, smiled, understood or did something.

Thank you

 

---------- Post added 03-10-2015 at 21:15 ----------

 

Have you been in contact with Autism Plus to see what they offer?

 

No. Equally though, Autism Plus haven't been in touch with me to see what I offer

 

I will be looking look the local autism provision in future to see what they're about.

 

But I think that, as part of the process necessary the bring about the paradigm shift necessary for autistics to live with equality in modern NT society, groups set up and run by autistics themselves will be very necessary.

 

---------- Post added 03-10-2015 at 21:16 ----------

 

Good post, onewheeldave. I'm not eligible to join, but wish your group all the best.

 

Thanks Dozer

[Rivelin6]

My daughter has Aspergers and I know how little support there is for people with it.

[-xsf]

NHS staff need better training, however in these times of austerity it is unlikely that additional funding will be found for this. Perhaps you should lobby your MP as well as the Minister for Health?

 

Incidentally, I don't like people being labelled "autistics"; perhaps "people with autism" is more positive and respectful? Imo.

[cgksheff]

NHS staff need better training, however in these times of austerity it is unlikely that additional funding will be found for this. Perhaps you should lobby your MP as well as the Minister for Health?

 

Incidentally, I don't like people being labelled "autistics"; perhaps "people with autism" is more positive and respectful? Imo.

 

There is now a legal requirement for such training to be given and for frontline individuals (not only NHS) to show that they have the necessary skills developed from such training.

Funding can be an issue, but cannot be used as an excuse for a lack of compliance.

 

Could I ask whether training is given to individuals with autism diagnoses on how best to go about identifying their status to service providers? ... and confirming their need for reasonable adjustment?

Edited October 5, 2015 by cgksheff

[-xsf]

There is now a legal requirement for such training to be given and for frontline individuals (not only NHS) to show that they have the necessary skills developed from such training.

Funding can be an issue, but cannot be used as an excuse for a lack of compliance.

 

Could I ask whether training is given to individuals with autism diagnoses on how best to go about identifying their status to service providers? ... and confirming their need for reasonable adjustment?

 

I think identifying oneself is pretty straight forward: simply inform whoever it is what problems you have and what adjustments you'd like them to make. It may be useful to talk to your social worker or doctor or someone who knows you well like a friend or family member.

 

Also, whatever diagnosis you or I might have, we still need to treat one another politely and with respect. Most people are willing to help if they know someone is struggling with something.

 

Lastly, simply stating something is a legal requirement is facile: if there is no cash in the budget to pay for something then service providers will resort to the bare minimum when it comes to additional training - people must put pressure on government to provide sufficient funds.

[Cyclone]

It's probably not helpful to approach the issue in an adversarial way, which the language in the OP suggests is the case.

 

But the same difficulties occur in the benefits system and, basically, most large scale neurotypical systems- they specifically put things in place that basically block many autistics from accessing the services they are legally entitled to.

For example, the implication made here is that things are deliberately made difficult. THis is not the case. The systems that exist have been created through evolution and work (mostly) for neurotypical people. Nobody has ever deliberately made a change to make it difficult for someone with autism to use the system.

The use of the word specifically in that sentence is misleading.

 

It could be written like this instead.

 

"most large scale neurotypical systems- have evolved to work for neurotypical people which often creates difficulties for autistic people and inadvertently prevents them from accessing the services they are legally entitled to."

 

Removes the adversarial tone, makes it clear that this isn't some nefarious scheme to excluded people with autism, and points out that the systems haven't necessarily been thought about, they've just grown to be what they are.

 

---------- Post added 05-10-2015 at 11:12 ----------

 

1. collect actual evidence of their mistreatment at the hands of the medical, or, any other system- I can definitily contribute here, but also we can swap experiences and devise more effective ways of getting evidence

 

2. Aim to take a group legal action. The medical system is not a logical one, and it routinely fobs off autistic people, seemingly oblivious that the 2009 autism act means that it is illegal to do so. The legal system is not perfect either, but, in terms of logic and appreciation of a good, valid arguement, it's far in advance of the NHS.

Adversarial again, and unlikely to create anything except resentment.

 

Before you start collecting evidence of mistreatment and taking legal action, I'd suggest that you collect evidence of systemic problems and work co-operatively with the organisations in order to achieve improvement.

 

I believe that legal action is the only way to make these organisation take their responsibilites and obligations seriously.

What makes you think that?

Perhaps the approach you take is what engers any responses you've so far had.

If you attack an organisation or individual, then they will react defensively, which is not what you want to achieve.

 

3. look into providing an informal and easy to access advocacy service i.e. for those who need support in trying to access medical treatment without the waiting times that neurotypicals find merely frustrating, but that, for many autistics, are intolerable, other members of the group could attend with them.

I think it's unlikely that waiting times can be altered simply because people with autism find them intolerable. I'm afraid that you need to manage your expectations if this is the sort of thing you are hoping to change.

 

Good luck, but if you precede in the way you've started this thread I don't think you're likely to achieve anything.