NAS does it again

So true. The professionals mainly see people attending their clinics. They don't tend to see people on the spectrum who haven't needed recourse to their clinics - but that includes a wide cross-section of people and severities, not simply those coping well.

One big problem therefore is that the professionals have most knowledge of people with many comorbid conditions who are presenting a psychosis, and who may provide confused messages. Some behaviours attributed to autism, may just be unrelated traits predominant in the clinical populations.

Another bias arises with trial volunteers. I'll probably be rebuked for being judgemental or for generalisation, but people who volunteer to be tested in various ways for research, whether that's interviews, or being set up with electrodes or sessions in a scanner, are already in the system, as it were, through having needed interventions. They will also tend to be London based, where there is a high enough population of such people.

Most managing individuals will not get involved in trials. Hence all the more reason for needing a more representative sample population than 10% of survey adults with autism.

Perhaps it suggests that the people who needed to have their autism identified or diagnosed have more problems than blessings from autism. Perhaps, in that group of people, the impairments that contribute to diagnosis are actually seen as impairments rather than differences? Perhaps the professionals, who are primarily exposed to people in that category are influenced by the impact that autism has on that group of people because they don't have much to do with other people on the spectrum who are managing perfectly well.

Perhaps disorder designates the state when balance needs to be restored and condition describes autism that is at ease with the rest of the world?

I'm comfortable with the term disorder but I may be more comfortable with a different term when order is restored?

It is a report of a supposedly scientifically conducted SURVEY of opinions, withrather a lot more credibility supposedly than just a qualitative report on opinions, IF it is done properly.

You have to give some thought as to how it will be used.

Statistically about 20% more people with autism apparently preferred "disorder" to "condition", so if you are arguing I have too high an expectation, best get used to having an autistic spectrum DISORDER

Because that's what the survey determined.

Given that this is a report on the opinions of people relating to the language used about a mental health issue which affects people across a spectrum of affect then I'm not sure what expectations you might have? The factors highlighted don't lend themselves to precision or certainty about anything. There isn't a golden truth to be identified, it identifies that the subject is foggy and fraught with disagreement. Identifying the range of views, and describing these in some detail, adds something to the knowledge of the subject.

Having 500 respondents from the autistic community is statistically valid enough, IMO, given the fact that there isn't a numerical quantity that had to be estimated.

I've added a comment to the General Chat sticky identified above -  re the published version of the report. There were actually 4662 respondents, making people with autism just over 10%.

But they massaged the numbers down to 3470, removing 25% for various reasons.

Reading the published report I have to say I have no confidence in any research carried out by NAS.

What was the point of this exercise?

On the research/survey:

So far there are only 6 (non-moderater) replies on the sticky thread "How would you describe autism? Language Research released." General Chat forum.

The moderaters write that they are  "keen to know what you think about this".
I am sure that there are more than 6 people out there who will have an opinion on what language is used re us and our autism.

There is a link to information about the survey and the numbers and groups of people surveyed.
The numbers are interesting... a few of us have already commented on the autistic group being quite small.  

There are significant differences in the terms each group prefers to use. So it is worth looking at if you are interested in how we are viewed. 

That view extends beyond surveys like this... they give a snap-shot of what we are likely to be called and how we will be viewed in the workplace as we have been discussing... and the wider world. 

I wasn't aware of the research and the paper that came out of it. I'll try and be a bit more sensitive with my terminology.

Personally speaking, autism is one aspect of me. I don't think it should define how people think of me. When you meet a blind or deaf person you don't think that their blindness or deafness pervades their entire being. It's one aspect that needs to be given extra allowances and assistance but they are mainly a human being with loads of other abilities that are entirely intact. I feel some affinity for them and feel emotionally blind but otherwise pretty functional. The inability to grasp what other people are thinking or feeling is like having a blindness. This thread has made me think about it and I feel more solidarity and understanding for other disabled people. Life is tough with a disability and I suspect that blind and deaf people may have less patience or sympathy for people who want special labels or categories.

In the world of work I think it is important to be given the opportunity, and special assistance if necessary, to get on and do the things that an organisation values. I want to be thought of as the inventive one that fixed a problem rather than that autistic person in IT that nobody can make sense of. The equality act and ATW aim to make this possible and I am grateful for these things being there and having the force of the state behind them.

How much does this one keep bugging us? For my part, I came to this forum relatively recently. Since then, I've thought of myself as a person on the autism spectrum so tend to use AS person. Not ideal, but I certainly distance myself from the spectrum of micro-labels because they are, by nature, discriminatory. I like autism spectrum, without additional adjectives such as 'mild or 'high/low fiunction'. It's a widely inclusive term.

I don't like to make micro-judgements within that. We do, after all, share common characteristics that, as many people point out, we handle to a better or worse degree according to what's going on at the time. I agree, just because I'm coping today doesn't guarantee anything other than that I'm coping today.

I'm annoyed that the moderator has chosen to refer us to the survey that the NAS carried out. I think we made the point sufficiently that the least represented group in that survey was US. I certainly recall, for instance, sharing a set of objections with Longman, but we heard no mnore about it. We're left, it seems, to accept the labels that the majority of non-AS people decided they like better.

I have to say, though, that if we can't organise ourselves into using a single 'label', we can't really say much against any of them, but I'd certainly be interested in getting involved in the discussion, provided it only involves AS people. If we speak with one description, and one voice, then at least we 'firm up' our identity and make it easier for other people to respect our collective decision.

I'm 'different', the same as any other AS person. It's an identity, not a label.

Hi electra,

Thank you for letting us know about this leaflet and we are certainly phasing out the use of ASD in most cases. However, rightly or wrongly, it is still a recognised phrase used by many professionals. As you maybe aware we have undertaken a review of the language we use to describe autism.

Could you provide us with the number in the footer at the bottom of the leaflet? We'll then be able to identify this leaflet and look into it further.

Take care,

Avi

I agree with you Longman.

If you have an Autistic Condition you are born with it, made like it and of course cannot be 'cured'.

I have never understood or agreed with the concept of diagnosing someone with the condition only if they need help. After all, if you have e.g. permanent low blood pressure, but do not need treating because you are coping with the dizziness it causes, they are not going to declare that you do not have the low blood pressure just because you are coping. 

When put in this context, with a different condition as an example, the whole concept around handing or not handing a diagnosis to an Autistic person, seems ludicrous. Coping does not mean that you magically have managed to change the structure and inbuilt operation of your brain. You'll still be autistic.

On the recognition of the 'more able' people with ASC in reference to employment; We do seem to be 'piggies in the middle' i.e. between NT's and those that need more help.

Unfortunately, it seems from what I am reading on these forums, (forgive me if I understand this incorrectly) that everyone, however able, is bunched together when looking for help in employment.
This is bound to impact on us, as there is the strong possibility that we will be viewed as less able than we are. 

I do hate the argument that the autism label can be taken away if you "get better" - so when you get worse you've got to go back through the diagnosis process again. OK maybe the proposers of this nonsense hope you'll pay £1000 plus for their private diagnosis clinic, when the need arises!

There seems to be a confusion between being autistic, and having certain manifestations that change over a lifetime. I think you are autistic from birth. Good periods of coping don't mean it has gone away. Also you should be able to feel you've achieved some control over your autism, not that you must have been making a fuss about nothing.

My grumble about NAS is what they are telling employers. Of course I could buy one of their information packs or pay to go on one of their courses, to find out what they are telling employers. Strangely those of us with autism aren't allowed to know, or be consulted about, what they are telling employers.

My suspicion is that it is entirely based on the Triad of Impairments, which is a diagnostic tool not a blueprint for living with autism.  Also I suspect that it mostly describes more marked autism - where people so affected would be going into supported places. Most of those working independently don't manifest in the same way, so it misleads employers. Thirdly I think NAS keeps bleating that we are good time keepers, and good at computing, which when employers don't find someone has these skills, undermines their confidence in NAS advice.

So it is not just what NAS calls autism that should worry us. NAS needs to get its act together on employment.

Fair enough Electra... it is good to have a rant sometimes.

For the record...

I am an Aspie.
I call myself an Aspie.
I have Asperger Syndrome... a condition on the Autism Spectrum.
...and I like being an Aspie. 

(p.s. I do recall Baron-Cohen saying that even though a person might be given a diagnosis at one point, at a later date if that person is coping well in life, they may not need that diagnosis any more... ie that diagnosis is given because of your needs at the time and not as a label for life. Off the top of my head, that was in the BBC Horizon programme about Uta Frith, watchable on youtube.)

I'm going to make myself really unpopular and say that whilst i do appreciate your support and your reasoning I don't like the term 'condition'

Condition implies something temporary, it implies there is an autistic bit of me you could cut out and leave a 'normal' person behind. This is not so. If i was not autistic then i would be a comletely different person, not me. I was born autistic, i will die autistic. I'm autistic from the top of my head to the soles of my feet, from the inside of my bones to the outside of my skin. And i rejoice in that.

Words matter, the language used to name and define people matters. Calling people autistic is fine, lets stick with that. 'Aspien' is good  and some people like to be called 'autist'. Lets name ourselves and take our identity back from the terms used by the medical profession which often limit and disempower us.

Further reasoning can be found here:

www.tonyattwood.com.au/.../79-the-discovery-of-aspie-criteria

yesthattoo.blogspot.co.uk/.../dont-call-me-person-with-autism.html

Here endeth the rant. For now

Autism Spectrum Condition, that is... CONDITION ...is the term Baron-Cohen and Attwood have both said they preferred, and it is the term that the Autism Research Centre uses. 

Disorder is a Negative term and as Electra points out, gives people the wrong impression, especially in the workplace. The word Disorder prejudices us. 

I have worked in support services and group facilitation for years, and one of the key points in treating people with dignity and respect, is in using the terminology they feel most comfortable with when referring to their Condition. 

I find it insulting to be referred to as 'Disordered' or having a 'Disorder' label. I am not 'Disordered'...  I am sure many of you will concur with this.
I am DIFFERENT, but definitely not in Disorder.
Disorder indicates that somehow we are made WRONG and operate WRONGLY rather than DIFFERENTLY.

CONDITION is an inclusive term. It can easily encompass those with an ASC who are more able and those who are less able. 

Condition is a positive term.

Why is it that we have the negative term Disorder imposed on us?   

I appreciate your point of view but I'm not angry about being autistic, I wouldn't be any other way. If i wasn't autistic I wouldn't be me, and that would never do! I am angry about the way the world treats us, my anger is directed out and not in, towards myself.

I don't think I should have to put up with being referred to in terms that I find demeaning and denigrating just to get help. I can be in another category to neurotypical people without being in one that says I have a disorder. I refuse to feel so pathetically grateful for help that I won't question the baggage that comes with it.

My employer will notice the word 'disorder' and its not being picky to think that it matters whether its there or not.

We are all entitled to a point of view but I must disagree with yours on this occasion

I'm angry about having autism and I suspect that electra is angry as well. It interferes with getting on in a world that is dominated by non autistic people.

UK government legislation covers treating us fairly for our differences through the Equality Act and requires employers to make reasonable adjustments for various designated sets of people in that. Autism qualifies for that designation and we can demand "reasonable adjustments" or claim discimination if refused.

Of course, in order to claim your reasonable adjustments, you need to be able to get into and stay in work.

If you have more than normal problems with doing some things then the government has a category for disabled people. These people need a hand up and extra assistance to bring them into work or to keep them in work if they are struggling. ATW falls under this category. Interestingly ATW must not be used to fund reasonable adjustments.

I fell into the ATW category this year and might be on the brink of it again. I don't like it and I would rather not be going through it but that is where I am.

I don't think an employer will really understand why you have such an issue with a particular word on a form. A lot of NTs skim read things without worrying about it the way we do.

So, if you want to be treated equally then you have to rely on the Equality Act, if you want specific, positive, paid for by taxpayers, action then you have to accept a different category.

I haven't thought it through in this much detail before but I think that is how it seems to me.

in my area ASC seems the prefered way of refering to autism...

condition rather than disorder.  don't know if it's a local thing though.

Agree, that needs to be changed.