New research on autism charities

I agree EP, I think there are many of us who struggle, we struggle with things like transport and are less able to cope when it goes wrong. We may have a bunch of foibles and phobias, one of the things that comes up again and again are resonable adjustments, is it reasonable for me to ask for a different uniform or fabric because the one I'm provided with makes me feel as though I'm having multiple electric shocks? How do we cope with sitting next to someone who's perfume is overwhelming and gives us a sick headache, or just the lung cloying scent of febreeze? How many of us suffer socially because we find it difficult to talk to strangers, we have problems getting to ND social groups, we get overwhelmed by the noise of so many people talking and music in the background?

When I was first diagnosed, I was told of a social group meeting in a bar in Bangor, I didn't go, for many reasons, but one was that there was nowhere safe to park my car, the nearest parking place was a supermarket carpark. I thought to myself, 'So I'm expected to do a 50 mile round trip, to go and sit in a bar with nothing I can eat, fizzy pop or water to drink, talk to people I don't know and who are probably a lot younger than me and walk through a dark car park and down a dark alley?' What surprised me was that people were surprised, just because I'm ND dosen't mean that I should be immune to basic personal safety.

I was asked by a charity to donate money to help ND people, I asked them if they could offer me any help, I got a firm no, they don't deal with people of my age, only young people, I don't think they even believed I was ND. Us older people seen to be ignored and not believed and it's thought even by "helping agencies" that we're lying, with so much of this stuff, it sounds horribly reminiscent of how sexual abuse and rape have been treated, the way that black and brown people are treated and the LGBQITA communities have been treated historically. If we don't exist even to those who are designed to help us be heard, then who knows what goes on behind closed doors? Who will listen and take notice of us?

This view interests me because actually, I'd say a lot of help already exists for those with the highest support needs. They won't live alone. Social services provide a lot of services like direct payments. They can claim pip. Many of us who visit here are those that lack support and don't know where else to turn. Yes we may be capable to a degree but what is very evident in frequenting this sight is the effect on mental health for many of us here is enormous. I also wouldn't say that those with high support needs are a majority. There are just as many, if not more autistic people with lower support needs, we are just massively over looked.

I read The Conversation article, and was taken by surprise when I read the following:
"For our study, we identified the largest autism charities in England and Wales... There were 11 charities that met these criteria".

I was surprised because the only autism charity I know of is this one (NAS). NAS is the one that everybody seems to get signposted to by GPs and mental health professionals. If there are others, then why am I not aware of at least some of them?

One of the reasons why I had originally joined this online community was because there didn't seem to be any groups in my local area for autists without moderate-to-severe learning difficulties. When I perused the various Advice and Guidance articles, the information seemed a bit too basic, and it didn't seem to represent me. As a result, I won't deny that I felt somewhat wary of joining the online community and ended up doing what a lot of other members have done... I lurked.

It is my view that Autism is complex. How can Autism charities truly represent us when we are all so different in terms of how our autism affects us? I think ArchaeC 's carpet analogy sums it up well.

I think to better understand the views of autistic people they also need to be employing them and have them on their board like this one does. They rely on volunteers and donations, but the general public would give far more to any campaign if there was understanding and awareness taught in schools from a young age. 

Expecto_Patronum said:

I also think a lot of local charities are set up for those with higher support needs. Those of who are deemed "high functioning" are often forgotten.

This will be by design.

They are working with those who most need the help as a priority and whatever resource they have left over (or have allocated) to help us will be secondary.

The one thing this community has shown me is that many here are capable of helping themselves with a bit of advice, support and encouragement.

There will always be outlying or marginal cases but I think the strategy of NAS will be to help the most needy and try to help as many others as is practical. They can't be successful every time.

I'm sure when they were allocating the resources they will have looked at the distrbution curves of those with high support needs and positioned themselves to help the majority. This approach means the most are helped but there will inevitably be stragglers at the ends of the curve who are left out.

As Spock would have said, "the needs of the many outweigh the needs of the few".

I think it's pretty obvious.

Any sizeable charity ends up having to pay people to achieve much. This makes them a company, except they don't pay tax.

Peoples' jobs are at stake. They have to get involved in raising funds, budgeting, planning, pensions, etc. It means the problem has to persist or become more visible. They also have to position themselves as the solution.

There are big charities with people on 6 figure salaries.

It's a conflicted environment. 

I can’t speak for other charities but it does seem that the NAS prioritises children and adults with high support needs and their families. This is an observation, not a criticism, but it got me thinking about ASD. The Spectrum is so large and it is as if each one of us is made up of multiple strands of a huge carpet, but we all share only some strands that are the same, yet they are of different lengths. So, how can a charity such as the NAS support us all, given the limited financial budget and expertise?

This brings me to the medical definition of autism as a deficit, ASD. (I haven’t yet read the relevant bit in the article) The medical people can’t classify us as autistic without the deficit. We can discuss and argue over what ‘condition’ we have or maintain that we ‘Are Autistic’, yet we can’t be slotted into any other classification other than as a deficit, unless we/society decides a ‘Social Condition’ register or something like that were to be  introduced. 

I am not sure what to think about the article but I have only scanned it—I need to read it properly and I haven’t time at the moment to research all the charities they mention.The journal publisher is based in California and authors are British based.

This is what the US publisher has to say about itself:

Also, interestingly the researchers are part of an autism charity I haven't heard of. The website is very hard to navigate so it's difficult to find out much of what they actually do. Intriguing.

That is interesting. I've just had a quick flick through but I can't take it all in at once. There is only 1 other charity in the list I've actually heard of and I haven't had much dealing with.

The NAS is ticked for a lot of the negatives, however, I've read quite a lot of their site and I'm just not seeing all those negatives there. Impairment is ticked but I can't find that word on their website. The big one I would say all the charities are guilty of is us being spoken for. There is a small gesture to hear from autistic people themselves. But to truly be able to run a successful autism charity I do think there should be a bigger push to hear from autistic people themselves and let them have input into what is provided.

I do also think that some of the NAS's work is smoke and mirrors and not quite as helpful as they might want you to think. I think this goes for many charities if I'm honest.

I do think it becomes tricky. We as autistic people are crying out saying we need support but then charities are being criticised for suggesting we should have support.

I'm not sure what the answer is.

The charities studied were all British. 

I also think a lot of local charities are set up for those with higher support needs. Those of who are deemed "high functioning" are often forgotten.

I thik this is a wider problem with charities in general, they can appear posessive of what, in this case, autism is and is not and how to deal with and treat ND as a whole.

To be honest I'm not entirely sure what work NAS does and I'm not aware of any other charities dealing with ND. I would cetainly like to see NAS leading from the front when anything to do with ND is in the media, I've seen numerous sections on autism on programs like Newsnight, but never have I seen a "talking head" from NAS.

One of the things I've noticed about groups that deal with autism is that they concentrate on how to claim benefits almost to the exclusion of anything else, it's like they don't know what to do if you get the right benefits. I don't know if this is a common experience, or just mine, but the local group for North Wales seems a total waste of time and money, the "help" they gave me was a list of organisations to contact who maybe able to help me, a bit like a human google. They couldn't cope with my poor digital skills and after me telling a woman for about 20 mins of my difficulties she offered me a zoom type induction meeting, when I'd just told her I don't have a smart phone or anything else like that. 

Another thing I'd like to see more about is how age and aging effects ND's, there must be a whole cohort of us coming up who will need geriatric services in the next decade or so and yet charities such as AGE UK and it's offshoots have no idea about ND and I fear that my generation will be the pioneer's who fall through the gaps in provision and understanding until theres some sort of scandal. My generation has already been unheard and unseen because ND wasn't recognised when we were growing up and it feels like we're being ignored again. I'd like to see NAS and other's actively engaging with other charities who support older people and agitating for better recognition of what is going to be a growing problem.

I'm intrigued whether this is American or British. My little knowledge of American charities very much gives the impression of them being the solution to the "problem". Autism speaks is well known (although they've back tracked on it now) to look for cures and solutions. But I have no first hand experience being British.

I don't know many in UK if I'm honest apart from NAS. I know there are local charities but I've never had much to do with them. I think the NAS does tend to put autistic people more at the forefront and does try to debunk the stigma. They do work to try and make schools more inclusive and give guidance to employers on how to make adjustments. And I'm not aware of them using language like impairments.