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Canopus

Should the NAS get out of AS and HFA?

12 posts in this topic

 

 

It really annoys me, my brother has CMT and there is a weekend expecally for him and he found his gf there who also has CMT.

No-one actually explains what CMT stands for.

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CMT (according to the website) is genetic condition that damages peripheral nerves. These are responsible for passing on commands from the brain to the muscles (motor nerves) and for passing information to the brain about sensations, such as pain, heat, cold, touch, importantly for balance - where your joints are in space (sensory nerves). When these are damaged, people are said to have neuropathy.

 

Because of this nerve damage, people with CMT may find that some of their muscles become weaker over the years, particularly in their feet and hands. Some find that feeling becomes duller, or numb, in the same areas.

 

In the UK, around 25,000 people are thought to have CMT, making it the most common inherited neurological condition.

 

CMT is an acronym for Charcot Marie Tooth, the surnames of the three doctors who first described CMT in the late 1800s; Frenchmen Jean-Martin and Pierre Marie, and Howard Tooth from the UK.

Edited by Deepthought

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The N.A.S. provides information about A.S.D., about getting diagnosed with it, about getting access to services, and it provides a means for people both on and off the spectrum to communicate and share experiences and offer advice.

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My own experience of the NAS is that AS and HFA are very much an afterthought and take much lower priority than people with classical autism who require residential care services. Quite of lot of the information that the NAS offers for AS and HFA is available from several other places.

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I would not go as far as to state that A.S. and H.F.A. are very much an afterthought, given the forums, but those who require residential or specialized support are definitely more catered for - just as it should be, and given that that is what the N.A.S. was actually set up for originally in 1962 - as essentially being then a parents group.

 

If though more support for people with A.S. and H.F.A. was to come about through the N.S.A., I think that would be major step forward.

 

But, as many of us know presently, after entering into adulthood most of the support is provided by people with A.S. or H.F.A themselves - by way of written or visual media etc. Perhaps as like the founding members of the N.A.S. in 1962 - there could be a H.F.A.S. say in 2022, possibly?

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The main issue is money. The NAS functions more like a government service provider rather than a conventional charity. Nearly 90% of its income comes from the government (mostly local authorities) and is specifically assigned to providing care services and to send kids to NAS schools. There is virtually no public money available for AS and HFA.

 

It is sadly true that the mentality and the psyche of NAS senior officials is to chase after public money then spend it on whoever it is assigned to rather than try to function more like a conventional charity by providing help and support to people where public money is not available using their charitable donations.

 

This issue of money is a prominent reason why many people with AS and HFA, and their parents, have chosen to disassociate themselves from the NAS because they believe it is a barrier which prevents the NAS from being reformed from within. It is often repeated that the NAS is really trying to cater for people with two dissimilar conditions - one of which has a steady stream of public money available for them and the other which hasn't. The argument that people with classical autism who require residential care services should be higher priority than people with AS and HFA just does not hold water. Their needs are different, in the same way that the needs of blind people are different from people who use wheelchairs, rather than higher or lower priority.

 

There is much truth that the NAS acts as a roadblock to the establishment of more capable and better focused organisations for people with AS and HFA because it is the organisation the NHS and the education authorities refer people with AS and HFA to.

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Money is certainly a issue with any service provision - property to operate from, equipment to use, and all that. As for being more like a government service provider, the N.A.S. (formally the Society For Autistic Children) is still a national service provider - as operates according to its original purpose for becoming a registered charity on the basis of:

 

1.) Starting a school for children with autism;

 

2.) Operating a residential service for when these children leave school;

 

and

 

3.) Providing an information and advice service.

 

 

These aims have and still are being charitably achieved by the N.A.S., and as such this is the very reason why it is as a charity receiving the public funding that it does.

 

When it comes though to the senior officials of the N.A.S. seeking money from public and private sources, and spending that donated money on those who it has been assigned to - as according to the three objectives listed above - the N.A.S. is as such being by definition a conventional charity. This to many people is not a sad truth.

 

Your statement that there is an argument that people with classical autism who require residential care services should be higher priority than people with H.F.A.S. and H.F.A. does not hold water - is the misnomer then that it could hold water a widely shared consensus? Or have you perhaps mistaken this for my meaning that the more practical services of the N.A.S. are given to Aspergians and Autists who are at the lower end of the socially functional spectrum, and the more informative and advisory services of the N.A.S. are given to those at the higher end? The fact that our needs are different is obviously undeniable, just as you also exemplified well in your statement regarding the different services required by blind people, and people who use wheelchairs.

 

To state that there is much truth that the N.A.S. is acting like a roadblock to more capable and better focused organizations for supporting people with H.F.A.S. and H.F.A. - because it is the organization the N.H.S. and the education authorities refer people with H.F.A.S. and H.F.A.!?! This is not something the N.A.S. is responsible for. Also; expecting more adult support from and at the same demeaning a charity that caters more for young children and young adults with serious personal and social coping problems - this is a very inefficient and roundabout way of achieving a very justified and worthwhile aim.

 

The problem you have alluded to has actually already been addressed from a very well informed perspective, unfortunately I do not recall who the author was other than that she was female. Her analysis of the situation regarding more practical support for people with H.F.A.S. and H.F.A. conditions; was that a new charity be set up to provide the required services, and at some later stage integrate with the N.A.S. to become a singular charity. She theorized that the N.A.S. could be quite supportive of such an aim, especially as it would be of great benefit to it as a charitable organization that has helped so so many many people for fifty odd years now, and as is just like all other charities and service providers that are really struggling to cope with more of the social care burden and the massively vacuous funding problems, and all that at the moment.

 

Does this seem to be a reasonable suggestion perhaps?

 

D.

Edited by Deepthought

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On 15/04/2017 at 11:03 AM, Deepthought said:

These aims have and still are being charitably achieved by the N.A.S., and as such this is the very reason why it is as a charity receiving the public funding that it does.

When it comes though to the senior officials of the N.A.S. seeking money from public and private sources, and spending that donated money on those who it has been assigned to - as according to the three objectives listed above - the N.A.S. is as such being by definition a conventional charity. This to many people is not a sad truth.

A government funded charity is a fraught and highly questionable concept. Ask the average man on the street about a charity and the chances are that he will say that it is an organisation which takes voluntary donations from the public and has the freedom to spend it on the people it wants to provide support and services to. The concept of government funded charities operating as government service providers is not something the public are always aware of. This even includes members and supporters of the NAS, especially those who do not require the services funded by public money. The NAS is legally a charity but technically it is a quango. With nearly 90% of the income of the NAS coming from the government with strings attached to who it has to be spent on and what services it has to be spent on it is very hard to justify that the NAS is a conventional charity. The conventional charity faction of the NAS operating using money from the 10% or so of income not provided by the government plays second fiddle in comparison to the government funded services faction.

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Or have you perhaps mistaken this for my meaning that the more practical services of the N.A.S. are given to Aspergians and Autists who are at the lower end of the socially functional spectrum, and the more informative and advisory services of the N.A.S. are given to those at the higher end?

There is a question as to what exactly does the NAS do for people with AS and HFA that ISN'T already being provided for elsewhere. For example, there are many websites about AS; books about AS from a variety of publishers; plenty of discussion forums like this one; and independent support groups that often provide a better service to people with AS (rather than parents and carers) more often than not run on shoestring budgets. 

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To state that there is much truth that the N.A.S. is acting like a roadblock to more capable and better focused organizations for supporting people with H.F.A.S. and H.F.A. - because it is the organization the N.H.S. and the education authorities refer people with H.F.A.S. and H.F.A.!?! This is not something the N.A.S. is responsible for.

This comes from hard experience. Over a period of several years I tried to promote my local independent AS support group to the LEA and the NHS trust but they never seemed to tell the people they serve with ASD about it and instead always referred them to the NAS. It was even discussed in meetings at the local AS support group whether deals had been struck that the NAS is the sole organisation to refer people with ASD to.

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The problem you have alluded to has actually already been addressed from a very well informed perspective, unfortunately I do not recall who the author was other than that she was female. Her analysis of the situation regarding more practical support for people with H.F.A.S. and H.F.A. conditions; was that a new charity be set up to provide the required services, and at some later stage integrate with the N.A.S. to become a singular charity. She theorized that the N.A.S. could be quite supportive of such an aim, especially as it would be of great benefit to it as a charitable organization that has helped so so many many people for fifty odd years now, and as is just like all other charities and service providers that are really struggling to cope with more of the social care burden and the massively vacuous funding problems, and all that at the moment.

I am vaguely aware of this proposal but I could not understand the logic why the charity for AS and HFA had to later integrate with the NAS when they will be dealing with dissimilar people who require dissimilar services, one of which has a regular supply of government money and the other which doesn't. It would be just as logical for the charity for AS and HFA to integrate with a charity for blind or deaf people as it would with the NAS.

The question I want an answer to is exactly which year did the NAS first recognise AS and openly state that they provide services for people with AS rather than more classical and traditional forms of autism.

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Being charitable as a person and being a charity are separate issues as individuals are able to choose whichever way and to whichever extent they wish to be charitable, whereas a charity can only provide for that which they are specifically set up to do.

The concept of government funded charities as being government service providers is common knowledge for those who work in the organizational structures of charities - whilst unsurprisingly many people have little or even no comprehension of how charities work beyond collecting or giving donations.

As for the charity or quango business - a charity does not stop being a charity on account of having become a quango, and there are thousands of charities operating specifically as they do on account of being funded by the government. The strings attached supposition regarding how government funding is spent is a contractual matter based purely upon how the charity is actually set up to operate - which for the N.A.S. is: 1.) Providing educational establishments for children with autism.  2.) Providing residential services for those children when they leave those schools. 3.) Providing an information and advice service. Wanting more than this is like going to one service provider when another is required.

With the information provision of the N.A.S. it provides exactly what it has been set up to do, and being that you favor other websites it is not as if the N.A.S. are going to complain considering how overwhelmed they are with people they 'can' help, and how much more overwhelmed they are with people they 'can't' help. The N.A.S. is quite literally being dumped on regarding the incapacity of the N.H.S. to provide adequate or even any services for people with A.S.D.. The N.H.S. has to refer patients somewhere else before those patients realize there is nothing freely available in terms of any support - being that N.H.S. staff are themselves already being insanely overwhelmed by the people they 'can' help, and even more insanely overwhelmed by those who they 'can't' help. 

When it comes to the possible A.S. and H.F.A. charity it would not 'have' to integrate with the N.A.S., yet as a charity that it is long established, well respected and knows how to hold its ground in terms of achieve funding requirements - it could be of major assistance to the proposed charity for providing adult practical support to compensate for the N.A.S. in terms of only being able to provide informative support. The reason this might be worthwhile is that the N.A.S. is set up to do as it does, and changing this would involve a massive overhaul of and additions to the entire organization - as would be extremely disruptive to their service provision.   

Your question as to which year A.S. was publicized by the N.A.S., depending on how much research you wish to do, can be answered to some extent at:

http://www.autism.org.uk/timeline

 

Edited by Deepthought
punctuation errors and word changes

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5 hours ago, Deepthought said:

The concept of government funded charities as being government service providers is common knowledge for those who work in the organizational structures of charities - whilst unsurprisingly many people have little or even no comprehension of how charities work beyond collecting or giving donations.

Common knowledge amongst people who work in big charities, yes. Common knowledge amongst the average Joe, no. A few years ago there was a website set up to expose the fact that many big charities were heavily government funded and therefore quangos rather than charities in a more traditional sense.

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As for the charity or quango business - a charity does not stop being a charity on account of having become a quango, and there are thousands of charities operating specifically as they do on account of being funded by the government.

Legally, yes.

Technically, this is questionable and debatable.

Quote

The strings attached supposition regarding how government funding is spent is a contractual matter based purely upon how the charity is actually set up to operate - which for the N.A.S. is: 1.) Providing educational establishments for children with autism.  2.) Providing residential services for those children when they leave those schools. 3.) Providing an information and advice service. Wanting more than this is like going to one service provider when another is required.

My verdict on the NAS is that (regardless of where the funding comes from) they provide education and care services for people with classical autism to the best of their ability but services for people with AS and HFA are tacked on like an afterthought and such people receive crumbs in comparison. Part of the problem is money because the money to provide services for people with AS and HFA almost entires comes from voluntary donations rather than the government, but the other part is a lack of will and desire amongst the senior officials to provide services for such people. This gets back to the original question whether the NAS should get out of AS and HFA altogether.

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When it comes to the possible A.S. and H.F.A. charity it would not 'have' to integrate with the N.A.S., yet as a charity that it is long established, well respected and knows how to hold its ground in terms of achieve funding requirements - it could be of major assistance to the proposed charity for providing adult practical support to compensate for the N.A.S. in terms of only being able to provide informative support.

The NAS probably has the expertise in being able to acquire public money but I can't see them as any better than hundreds of other charities when it comes to fundraising from voluntary donations. Considering that next to no public money is available for people with AS and HFA then fundraising from voluntary donations is the only way to go. The proposed charity for AS and HFA should instead look towards other successful charities which are almost exclusively funded from voluntary donations for advice and inspiration.

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Your question as to which year A.S. was publicized by the N.A.S., depending on how much research you wish to do, can be answered to some extent at:

http://www.autism.org.uk/timeline

No mention of the paper about AS published in 1981 by Lorna Wing.

It mentions Chris Gillberg's AS criteria from 1989 but no indication whether the NAS acknowledged it that year.

DSM 4 recognises AS in 1994 but no indication whether the NAS openly stated that they now provide services for people with AS that year.

Also no mention of the Centre for Social and Communication Disorders set up in Bromley in 1991 by Lorna Wing. I'm trying to find out if the Maudsley hospital was the only place in Britain that could diagnose a person with AS before 1991.

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