Published on 12, July, 2020
All her life my daughter has fought the stigma that being Autistic was defined as, first a "learning disabilty" and now a "disability". It has destroyed her life, made her feel inferior and sapped her self confidence. Then to see the BBC describe autism as a "lifelong disability" made me furious. Then to find that the source of this bigotry is the definition on the NAS website makes me incandescent with rage. I too am Autistic. The NAS does not represent me or my daughter. The challenges which Autistic poeple face are not what we are but how we are misunderstood. For the NAS to insist on perpetuating these myths makes you part of the problem. I can only presume your definition of Autism was written and approved by a bunch of, perhaps well-meaning, poeple who suffer from Autism Deficiency Syndrome and who lack the flexibility of thought that Autism gives us and we, in turn, have given the world the technology which I am using to write this.
I have no arms or legs, that's why when i go swimming they call me a clever ***.
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).
Ok, fair enough.
It’s not free time - NAS is a big business - they turnover well over £1m a year (I can’t remember the exact figure but you can get accounts from the charity commission website) I agree they don’t discriminate but they have their priorities which can tie in with their business. It’s also worth remembering the society started as an autistic children’s society and a lot (most?) of its focus is still on children perhaps correctly as more can be done for autistic children than autistic adults.
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
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 do not think NAS discrimanates.They Give up their free time to help.I may have got this post wrong ( sorry if i have ) but this is a funded site who aim to help People like us.Please correct me if i am wrong.
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.
I don’t know - I sometimes feel society is oppressing me particularly in the area of disability discrimination which may be illegal but is also very difficult to prove unless the offender / oppressor is stupid enough to put it in writing.
Ian said:We need an organisation that will fight for our right to be neurodivergent, not collude with the oppressor!
Who is oppressing us? I certainly don't feel oppressed - sometimes disadvantaged or misunderstood perhaps.
Ian said: We may need some environmental provisions to function effectively, or to have information presented in particular formats.
That is like saying wheelchair users only need some environmental provisions like ramps, hydraulic steps on busses etc.
It still adds up to the same types of changes that any group of other disabled people need, but with autism being a spectrum then the range of things is wide, inconsistent in its need and often variable in when it needs to apply.
Our needs are likely too complex to have any one-size-fits-all solution but without the access label of a disability classification then nothing would be open to us.
My opinion is that the existing solution of a disability classification is better than any of the alternatives so far presented as it allows us to request solutions based on our individual needs and not based on other parts of the spectrum that don't affect us.
The NAS is, first and foremost, a multi-million-pound disability business. It runs schools, care homes and other institutions, and gets paid by local and central government for doing so. The company makes its money by providing services for the least-able members of our community who need "care" and, yes, sometimes supervision. I am guessing that many of the care staff are just doing a job as they would in any other care home, working to feed themselves and their family, and that includes the managers, accountants, HR people, salespeople and publicists. The NAS is, in Weber's terms, a bureaucracy. It follows a "welfare " model of "expert providers" who provide institutionalised care under the guise of benevolence, provided they are the cheapest bidder.
There are many autistic people who hold down responsible jobs - university professors, teachers, doctors, social workers ... and who are beginning to "come out" as neurodivergent. The last thing we need is to have the largest autism charity telling the world that we are the neurological equivalent of Tiny Tim, poor little psychological cripples. Autism is a learning difference that applies to a significant part of the normal distribution. We may need some environmental provisions to function effectively, or to have information presented in particular formats.
It is unfortunate that the only current way in which one can access appropriate provisions requires us to assume a mantle of "disability" in order to qualify under the Equality Act and other legislation. It is not like being gay, black or trans, where one can self-identify as a minority and qualify automatically for equal treatment. We still have to go through the medical model of "diagnosis" or the welfare model of "needs assessment" to have our differences validated. We need an organisation that will fight for our right to be neurodivergent, not collude with the oppressor!
Ausomely Autistic said:I don’t like the term special needs,
Etc
The needs are legion and it is because of this that I believe we need this term whether it applies to me personally or not - we need to look at the bigger picture of our tribe in my opinion.