Hey NAS we are different not disabled

Yes definitely it makes us as a group of autistic people recognised just like you might associate afternoon tea or small talk with British culture.

Iain said:

I understand there is a need for this for some people - do you have an idea of what sort of numbers of people need it?

According to this very specific video below, autistic doctor Mary Doherty explains that an extremely high number of autistic people avoid doctor appointments because they cannot use the phone. This obviously has very serious consequences.

https://youtu.be/s_8CZKmxxco?si=Ofz7UFcA0Vh3nenj

I don’t understand why alternatives like email or a text based web chat would cost so much.

Are any of them culture? I suppose it depends what you mean by culture.

It’s not only people with autism though. Someone who was blind recently won a Tribunal case forcing DWP to send him correspondence in an electronic format which was compatible with his screen-reader (I can’t remember the format but it was probably something as common as Word) DWP retaliate by sending him stuff in Word but sending it to him so delayed that he has often missed deadlines for replying by the time he receives the material from DWP and he has to renew the complaint process all over again.

Luftmentsch said:

unique autistic culture

What I mean by this is the ideas and beliefs we have as a community which includes things like not using eye contact, our dedicated interests, sharing stims and info dumping.

Taltunes said:

Unfortunately DWP have to be dragged kicking and screaming one Tribunal verdict at a time to do something they should already be doing under the Equality Act

I guess part of that is that the DWP would have to decide which other area to take the money away from to pay for the autistic claims. Once you start to see it in that context it becomes difficut to keep fighting.

The source of the issue is a lack of funding and that is under the governments control, and following recent discussions on this forum, I doubt any other government is going to be any better.

On that depressing note I think it time for an afternoon coffee and donut!

Agreed but it doesn’t excuse e.g. DWP given the number of autistic people claiming benefits. Unfortunately DWP have to be dragged kicking and screaming one Tribunal verdict at a time to do something they should already be doing under the Equality Act - that’s why they keep losing Tribunals. Unfortunately it requires a great deal of persistence and support to get these issues to Tribunal.

It doesn’t help when most of the efforts of the NAS are, perhaps correctly, targeted at children. You can understand why people then think it’s only / mainly a childhood condition although the GP should have known better. Having said that how long do GPS get in their training on hidden and mental health disabilities? Not long so unless the GP has a particular interest in the area their is a limit to what you can expect. GPS are basically gatekeepers controlling who gets to see consultants, specialists etc and who doesn’t. Sometimes you have to effectively tell the GP what to do.

Ausomely Autistic said:

For some of us who cannot speak on the phone due to fear of uncertainty and vague communication or those of us who experience situational mutism in these situations, other means of communication should be available.

I understand there is a need for this for some people - do you have an idea of what sort of numbers of people need it?

Looking at an article on it they have a great diagram on what it involves which also explains why it is not being widely adopted.

from: https://www.autism.org.uk/advice-and-guidance/what-is-autism

The cost for every company to do this is unfeasable, so there would need to be a huge number of people with needs enough to drive the adoption of the technology (say 15% of the population as a very rough guess).

Iain said:

Many autists do have special needs though.

Some cannot speak on the phone due to various autism related issues

Some cannot tolerate being around groups or crowds

Some cannot tolerate loud noises, types of lighting or smells

I understand and respect your point, but the examples you have just given are all autistic needs. For some of us who cannot speak on the phone due to fear of uncertainty and vague communication or those of us who experience situational mutism in these situations, other means of communication should be available. Everyone use AAC , even if we don’t realise it!

I think the only things that distinguish us are the problems we face which are necessary to be diagnosed as autistic I.e triad of impairments (differences?) and hypersensitivity but even there different autistic people are sensitive to different things. None of these qualify as culture.

I've never really understood the idea of a "unique autistic culture." I've met different autisitics, online and in person, and I don't really see us as culturally distinct. It's true that a lot of autistics are part of geek sub-culture, and some are part of queer sub-culture, but beyond that, I don't really see much that distinguishes us a whole. I admit, I see less of the whole "neurokin" thing than many others here. I don't find that I automatically connect with someone because they're autistic.

I don't experience autistic joy either, although that could be alexithymia (which a lot of autistics experience, so...).

VLD said:

What really annoyed me was that NAS concentrate on the negative aspects of Autism. Surely they could highlight the positive traits that autistic poeple have

I completely agree, there is no mention of our unique autistic culture or autistic joy! There is not sufficient information about the power of dedicated interests or our own community for our mental health. I think this is because NAS is a non autistic led organisation which therefore means they write observations about us. I love this online community run by NAS but I don’t agree or relate to the majority of the information they write about us. I much prefer autistic led organisations such as Aucademy.

What would you like the NAS to write about us instead?

Ian said:

We have public services - NHS, social care, education - that are being starved of resources and where the accountants effectively drive the policy.

That budget comes from the government and then the high level management of the NHS have to decide which branches of the NHS get the split of the funding so by the time it filters down to the accountants of each department in each region they have very little say in how it is used.

It an organisation as massive as the NHS it is certainly a beurocratic nightmare but I don't see any other country in the world working at this scale and being able to do what the NHS does across the board.

I suspect it is an issue of scale and budget, plus the control by career civil servants.

Ian said:

I looked up "oppression" and one definition was: "prolonged cruel or unjust treatment or exercise of authority." I see that in my work

Is this a case of someone or something is being cruel/unjust? A person or group of people we can do something about, but if it is the NHS them railing against them is like throwing stones at the wind - much better to work out how to work the system than waste energy on something we have no hope of changing.

Ian said:

One does not need to be "diagnosed" as gay or straight, black or white, in order to qualify for equal treatment.

But it is not equal treatment we ask for here. Equal is already there but what we are asking for is "fair" treatment to accommodate our needs.

The equal is not working for us as we are not the same as others. The same is true for wheelchair users in our discussion - if we treated them equally to able bodies people then they would not be able to get up stairs etc.

Making the majority of society constantly adapt themselves to every minorty group that comes along with a need is not practical and not fair to the majority on non-special needs people. We need to find ways to accommodate the need of the few where practical - adding ramps to public buldings for example rather than rebuilding the world around the needs of the few.

I agree with sensible initiatives about new build houses being wheelchair accessable - this doesn't require much change so is quite a reasonable adaptation. Should we then ask for triple glazing and sound deadening insulation on all new builds to cater for the small percentage of autists with auditory sensitivity too? How about retrofitting train windows to dim them for those wilth light sensitivity. That may not work for those who have poor vision so how do we find a balance that is fair for all.

Fair and reasonable have to be the guide words I think.

Hi Iain. I was using the rhetoric used by other minorities. As a white cis-male I am expected to "check my privilege". One does not need to be "diagnosed" as gay or straight, black or white, in order to qualify for equal treatment. The problem with "disability" is that it is predicated on a medical model ... you have the "normally able" and the "disabled".  To get the "disabled" label one has to satisfy some external bureaucracy ... if you need accommodations you need an assessment to prove your entitlement.

If I do a social work assessment I am very aware of my power ... the way I write my report, the boxes I tick, may affect someone's entitlement to services.  In the ideal world, all new buildings would be step-free and wheelchair users would not need "special" access. If we had an education system that was able to meet diverse learning styles as of right, kids would not need EHCPs.

In an ideal world, parents would not need to pay people like me to give "expert" evidence to a SENDIST in order to get a judge to instruct their education authority to provide the services their kids need. Public authorities would do the right thing <because> it is the right thing, without the need for pleading or threats.

I looked up "oppression" and one definition was: "prolonged cruel or unjust treatment or exercise of authority." I see that in my work - authorities who try to avoid their legal duties, or save a few pounds by creating waiting lists and lengthy "assessment" processes.  We have public services - NHS, social care, education - that are being starved of resources and where the accountants effectively drive the policy.

I give my students a quotation ... ironic, isn't it?  When I worked for a local authority, it was all about money and "gatekeeping" scarce resources rather than what clients actually needed.

What really annoyed me was that NAS concentrate on the negative aspects of Autism. Surely they could highlight the positive traits that autistic poeple have. As is said elsewhere,  the real problem is employment. Employers are really missing out on excellent staff because they think job interviews will tell them something about whether the candidate can do the job. What they actually get is poeple who like to gossip all day.

BTW

I just had to fill in a DWP form labelled "Capability for Work Assessment" which only asked what we can't do. In fact the questions were identical to those on earlier forms for "Incapacity". 

Sorry to be clearer I was thinking about being turned down for jobs because of disability. I have to disclose my disabilities on my cv to explain the gaps in my cv but as soon as I disclose my disabilities I rarely hear anything further from employers. I have been given explanations why I haven’t got jobs verbally which I would certainly have challenged if they had been given to me in writing. I was even told by an interviewer at a local NHS trust who are meant to be disability confident if that is the phrase in writing that I couldn’t be disabled because I had managed to apply for the job. I eventually got a (partial) apology from the acting chief executive of the trust but no interview.

And yes I’ll accept that disability discrimination is not deliberate oppression but it has the same effect as if it was done deliberately to oppress me.

I’m not sure I’ve got more to add. As I said the main area is disability discrimination which I definitely think is deliberate even if it is borne out of fear, ignorance, laziness etc.

Taltunes said:

I sometimes feel society is oppressing me

Can you expand on this please? Im curious when the boundaries are between deliberate oppression and the environment of the neurotypicals being difficult for us to be in.