Autism, Irish Autism Charities and Autism Speaks?
Tony Attwood talks about Aspergers Syndrome
Autism, Apergers, Autism Advocacy groups and Irish Autism Charities
When my son was first diagnosed with Autism back in 2010 like all parents who initially get this life altering news, you live in a blur for a while. You go through all the stages you would when dealing with a bereavement because you now have to deal with the reality that so many things you thought you would be able to do with your child might not now be possible. I deal with the diagnosis and the ensuing grieving process in some of my other Hubs one being About an Autism Diagnosis: Grieving, being heartbroken and then accepting it.
The Autism Diagnosis in the beginning:
This Hub is about what help you can (or cannot expect to get) from many of the Autism groups that you may approach looking for help, advice or maybe just to talk to some other parents who are also in your situation and who have also been through a similar level of pain.
At the onset you may also want to help fight the good cause i.e. help to make things better for all our autistic children for the future. That was me a couple of years ago and I really did want to fight the good fight to just try to help improve the miniscule state services and maybe help to bring in some money for local autism groups, who I assumed at the time wanted the same thing that I did which of course was to make things better for all our children.
Looking back now I realize this was a totally naive standpoint to have taken and it was only later that I began to remember the words my doctor had caustically spoken to me months before when I had asked him why he hadn't helped me to get a diagnosis for my son a lot sooner. As like many parents going through the realization process that your child needs help I had repeatedly discussed my concerns with my doctor only to be fobbed off time and time again. Anyone who has been through the process of trying to get an Autism diagnosis for their child will know what I am talking about.
A few classic examples of Doctor’s fob off lines about an Autism Diagnosis:
- Boys talk quicker than girls. When he does start talking he’ll catch up very quickly.
- Perhaps you are overreacting why not just wait and see, he/she is still very young.
- You don’t really want to label him or her do you?
- Are there any problems at home that might be causing these behavioural issues?
- Is this your first child? Or alternatively if you have other children already your first one or other two etc were quite advances for their age really weren’t they so this one is probably just developing at a more normal rate.
These are all phrases that every patent of an autistic child will hear quite a lot sooner or later. No matter what country you are in the basics change very little.
I was told also that I just didn't understand the politics behind autism in Ireland and looking back in hindsight I so didn't. Even now I probably don't even know the half of it but that is still 50% more than I knew back then.
Politics behind Autism:
You see the Politics behind Autism is probably going to bombard you from every side imaginable. It comes from the indifference of many within the medical profession (by no means all though just some). You will then be weighed down by all bureaucracy and the lack of funding within the state services, many of whom would actually like to help you more but they just don't have the time, the energy, the staff, or the funds. Then there will be other's in the state autism services who will clearly have ambition in their eyes and just want to climb the career ladder. So in order to do that they must not be wasting precious resources unless there is just no way around it whatsoever. These are the Social Workers, Therapists etc who will use any means at their disposal to convince you that your child doesn't actually need their help at all. Instead they will send you home with knots in your stomach and tears in your eyes because they really have made you feel that your child's behavioural issues are because of you and your lack of ability to handle your child properly. They don’t add that you have really been thrown in at the deep end here and they have years of training and experience behind them with which to help your child. Shame on them but that's just more of the autism politics.
As for the Government I don't think I can even go there very much today as this article is supposed to be about Autism Charities which I haven't even touched on yet. So just in summary they know like the entire world knows that autism is now a pandemic of mammoth proportions and despite the BS that they put out about there not being more autism these days we all just have to look around us to know that these statements don't match the reality of the situation. In reality 1 in every 5 children today has some type of learning difficulty i.e. 20% of the up and coming population are classed as learning disabled.
The Causes of Autism:
Why you might ask is still completely under speculation but genetic predisposition, combined with environmental toxins, seem to be the ones that keep popping up again and again. But then there is the absolute PR nonsense that is put out there every so often I would think often just to deflect away from too much scrutiny being put on what the real causes of Autism actually are. Ludicrous articles like a study has been written claiming that ‘potato chips,’ have been linked to autistic symptoms in some children i.e. one alien child living on the moon whose identity cannot be released because of Earth and Intergalactic relations. This child may have flapped its hand once after eating a mouthful of potato crisps. Or things like if the mother ate a chocolate bar during pregnancy then this could have affected the unborn foetus. You get my point here I am sure I ,mean some of these studies just that pop up on Social Media sites and then poof they disappear again just as quickly never to be heard of again.
Autism, Social Media and Autism Advocacy Groups:
Personally I believe the advent of Social Media has brought a whole new dimension to the way Autism Advocacy groups now tend to operate. Here in Ireland there are many Autism charities most which I have contacted over the last few years. Initially I was welcomed with open arms and was told about coffee mornings and the dates of meetings etc., At the time, being new to it all I went into it with an open mind. As time passed I became concerned that every effort I made to highlight the issues seemed to be actually dampened down by those who flew their banners as advocating for the rights of autistic children in this country. I began to become puzzled as to how some of these groups operated and how they actually helped fight against the problems that autistic children and their parents face.
Things got freakier still when I went to the newspapers and found the things that I wrote were actually being overlooked because of the interference of key people within certain Autism groups. Apparently my message was too radical and rather too controversial and politically incorrect for their tastes? I started to become very confused as to how a mother of an autistic child telling the truth could be considered in this way? Then I went on the radio and once again things took a rather dark turn when I started getting hate emails and viruses sent to me consistently. Also strange things were happening on Social Media sites, dubious identities, cyber bullying and other actions began to freak me out. So much so that at one point I had to deactivate my FB account for a year.
It was at that point that I started to believe that there was something rather strange going on in Ireland when it came to Autism groups. So I dug a little deeper and discovered all of Ireland’s Autism groups are all affiliated to each other i.e. they are all controlled from one central location which meant all their funding was also under the control of one entity. Also all the PR and Social Media seemed to be under the management of this same entity.
Where do the Autism Donations go really?
When I had a look through some accounts from some prominent Irish Autism charities, I also noticed that there were large Government Grants given to many despite the fact that these same groups claimed ‘they got no Government funding whatsoever,’ and were completely dependent on donations and the goodwill of the public.’ So then I sought to interview one such CEO who ducked and dived for many months before eventually disappearing back into obscurity without ever having met me to discuss my concerns, about the lack of Autism Services in my area and what help could be given to my son and others. Even though he publicly proclaims he always wants to help and all you have to do is asked. Well I asked and got sweet FA.
Yet the glossy booklets will still proclaim that Autism Advocacy Groups spend a large amount of their budgets on helping autistic people of all ages and these brochures all have people in them, smiling up at you serenely and underneath there will be a list of all they are doing to help you. My experiences take on it is as follows:
What Autism Advocacy Groups generally claim they do for people with Autism:
1. Our No 1 Celebrity endorses our Group:
In translation this often means we spend loads of your donation money getting key celebrities to smile serenely for the camera and say how they feel your pain. Anytime we hear of a celebrity having an autistic child we home in on them and offer them a sweet deal to talk about how the help of our group has transformed their lives. Then in order to get you to give us more of your money, to allow us to continue selling you this PR Propaganda our key celebrities will then also talk about what this Autism Advocacy Group does for the lower class of person with an autistic child. Even though this celebrity actually has no clue if this is really the case or not because their child doesn’t ever use the state services and can afford therapies and medical tests that most of us poor peasants haven’t even heard of, because we don’t know the right people.
2. Our main aim is to increase awareness of Autism:
Increasing the awareness of Autism is a good thing but let’s face it if you are living with an autistic child, sibling or adult etc., you pretty much know an awful lot already about Autism and what you actually need the most is some support and guidance. You don’t need a glossy, expensive booklet telling you the difficulties faced by autistic parents because you live with it 24/7 and what you really need is somebody to give you a break sometimes so you can have an extreme luxury like getting you hair done, or going out for a leisurely lunch. Or God forbid I can’t even imagine the luxury of a night away, just me and my better half, that’s just too big a fantasy for us to comprehend. Or even a small bit of therapy for your child so you don’t have to spend so much time fighting for the almost non-existent state services to help you. In summary some practical support that can make all the difference to an overworked under appreciated carer.
3. Services to help diagnose and support autistic children.
Services to school children in both a mainstream or an Autism specific class to help support their needs or assist in their integration.
Statements like the one above usually appear somewhere in an Autism Advocacy Group leaflet and it sounds really good and would be if anyone could ever actually get these services. I have spent a lot of time contacting many groups asking them for just this type of help and the following are some of the replies I have gotten:
Your child is not in our area do you have a local group you could contact?
Then the local group might tell you we can only help if your child isn’t already affiliated to an established state service (which of course every diagnosed child is i.e. they are a name on a list but the services are rarely or sporadically given because they have no resources to do it), so if you say they are that’s that then. Go back to the state services and talk to them about it.
Emails remain unanswered, phone-calls go to answer-phone and messages are never replied to. There is nobody ever available in person to discuss it with you. Yet a week later you might see a lovely article in a magazine with a sun-tanned celebrity beaming back at you telling you if you need help then don’t hesitate to get onto this Autism Advocacy Group, because they are doing great work altogether. Where exactly is never specified or who are the people who actually get this help conveniently can never be revealed due to ‘confidentiality reasons.’
4. Positive feedback about the Autism Advocacy Groups good work.
Apparently according to the PR Department (which again is a hefty portion of their yearly spend), there are numerous positive feedback testimonials available on how these groups has helped autistic children and their families.
Jack from Cork is thrilled.
Mary from Limerick is ecstatic with joy.
Keith from Dublin is a new man now thanks to their marvellous help etc..etc..
The only place I have ever heard mention of actual people claiming to have been helped by Autism Advocacy Groups in Ireland is on Facebook. Strangely enough these individuals are usually the ones with vague avatar pictures and always seem to be rather defensive in their guarding of their group. In the early days these rather out of focus looking people intimidated me but these days it takes more than a blurry avatar picture of a virtual person with huge sunglasses and a wig covering half their face, to do that.
5. Walk, run or cycle to help children with Special Needs
This is a huge movement in Ireland these days people are walking, running and cycling in large numbers which is a great health movement. Many groups have formed and they all believe that doing a charity marathon, walk, cycle etc., is a great social day out where they can test your fitness and earn money for special needs children at the same time. Unfortunately I think this movement has been hijacked somewhat by Autism Advocacy groups who are using their banner to obtain funds that do not go where it is claimed. How many people would raise money for this group if they were told that for every €100 they were sponsored for, only something like €1 of that donation will make its way to helping children with Autism. Often the other €98-€99 will be spent on paying the CEO, the Directors, the smiling happy celebrity who endorses the charity and keeps the money rolling in, the PR team to pull at your heart strings and keep the whole show going, Gala balls, Golf Tournaments, Fashion Shows and other glamorous events to raise the profile of the group and keep them in the media; are also quite expensive to stage but its good Public Relations to let those that can afford €100 per ticket to feel they are doing their bit too. Also new contacts can be made to keep the whole apple cart rolling.
6. Autistic parents and children and what they generally get from Autism Advocacy groups
You’ll get a nice smile, be told they are available at anytime to help you (except when you actually contact them of course),and they offer you advice on how to access state services that you can access anyway without their help and by reading a few booklets or looking it up on line. If you attend meetings and coffee mornings you will meet other parents and share advice and experiences so that is a positive aspect to it all which also costs the Autism Advocacy Group practically nothing and it still does not provide support or therapy for your children or even a carer to mind your child to allow you to attend these functions. So often you find it difficult to get there anyway.
7. Ireland Autism Group’s way of lobbying the Government for an improvement in Autism Services.
For this article I decided to google what Advocacy was result below from Wikipedia. For full definition please go to their site.
Advocacy groups (also known as pressure groups, lobby groups, campaign groups, interest groups, or special interest groups) use various forms of advocacy to influence public opinion and/or policy; they have played and continue to play an important part in the development of political and social systems. Groups vary considerably in size, influence, and motive; some have wide ranging long term social purposes, others are focused and are a response to an immediate issue or concern.
Motives for action may be based on a shared political, religious, moral, or commercial position. Groups use varied methods to try to achieve their aims including lobbying, media campaigns, publicity stunts, polls, research, and policy briefings. Some groups are supported by powerful business or political interests and exert considerable influence on the political process, others have few such resources.
Some have developed into important social, political institutions or social movements. Some powerful lobby groups have been accused of manipulating the democratic system for narrow commercial gain and in some instances have been found guilty of corruption, fraud, bribery, and other serious crimes; lobbying has become increasingly regulated as a result. Some groups, generally ones with less financial resources, may use direct action and civil disobedience and in some cases are accused of being a threat to the social order or 'domestic extremists'. Research is beginning to explore how advocacy groups use social media to facilitate civic engagement and collective action.
So then I decided to Google what in comparison is an Autism Advocacy Group described as being. The top result is a link to Autism Speaks which is an Autism Advocacy group that is affiliated to Ireland's Irish Autism Action of whom Keith Duffy of Boyzone fame is their patron and often also their spokesperson. Sometimes Ireland's Autism Advocacy Group Irish Autism Action is also referred to as Autism Support Ireland
In America (where they say they are always about a decade ahead of Ireland), a lot of people are not happy with the way Autism Speaks operates their charitable institution:
Autism Speaks get 50,000 dollars. Where will it go?
So many people mean well but do they have any idea where their Autism Donations actually go?
Protest by autistic people against Autism Advocacy Group
Why are people not happy with Autism Speaks?
Why are people not happy with Autism Advocacy Groups like Autism Speaks?
In Ireland many are starting to be unhappy with Ireland's main Autism Advocacy Groups and in America it is now well documented that many are very unhappy with Autism Speaks (most autistic people proclaim that Autism Speaks does not speak for them). Many autistic adults maintain that they have been ostracised by Autism Speaks and are not welcome to join it. I have had similar experiences here in Ireland in the past with high profile Autism Advocacy Groups.
Autism Speaks markets and promotes itself as a group for the parents of autistic children but not for autistic people themselves. Yet as I have pointed out here in here Ireland too in the future these autistic children will become adults too and as there is a strong genetic contribution to Autism how can they hope to remain Autism free in the longer term? Personally I feel autistic adults are unwelcome in many Autism Advocacy groups because they want radical change and in reality these groups just want to keep everything as it is. Why you might ask? Well it’s the politics again really. Autism Advocacy groups are not there to improve the lot of autistic children or their families really. All of their accounts show this for anyone that wants to obtain them and look at them. (I have done this already and the answers that I got to many questions were very vague, very unsatisfactory and quite shocking at times).
What are Autism Advocacy Groups really all about?
The real purpose of Autism Advocacy Groups seems to be to try and keep the parents with autistic kids at bay. They are a kind of Public Relations group that hand out leaflets while also trying to cajole the masses. Governments work well with these groups (or perhaps in some instances even run these groups!) because they are a wonderful watchdog for any potential Rabble Rousers, (I have been caustically told by an Autism Advocacy group that nobody likes a Rabble Rouser.), with their combined effort these potential troublemakers can be homed in on and curtailed from every angle before anybody actually listens to them and makes people realize that regardless of what group they are in nothing changes and their autistic children are still being ignored.
Autism Advocacy Groups quell the masses?
When there are rumblings from the masses and a lot of rumours start about where all the money is actually being spent to help children with Autism. These Autism Advocacy groups decide to throw a bit of loose change into the pot and have an event. Either it might be an information day (that everyone will have to buy a ticket for anyway also and they will have negotiated special rates with the speakers and probably a profit share on any sales), or maybe a Family Fun Day. Once again the organizers will get the prices for venue etc., very cheaply due to the organizers being a charity. Then some nice photo’s will be taken, well meaning volunteers will help out believing they are doing their bit for Autism. Then there will be some nice articles written in the local papers, handouts etc., to let the general public see what good work this group are doing for the local area.
When parents are asked to take part in bucket collections they always do so under the belief that they are collecting funds to help local autistic children and their families. Some Autism Advocacy groups use the mantra of always spending donations received, locally. Yet do the accounts of these charities correlate with this? In my experience and through my research to date I would estimate hardly ever. Autism Advocacy groups in general are not about helping autistic children or their families. Instead they are about giving the appearance that that is what they are doing but in reality its big business.
Autism Advocacy is a very profitable business:
Lets face it there are a lot of dubious Autism Therapies out there and others that have a certain amount of success but the bottom line on many of them is that they have developed into thriving, profitable industries and Autism Advocacy groups are at the forefront of being able to profit from them, either directly or indirectly.
Where does the bulk of the money donated to Autism Advocacy Groups go then?
Research and Autism Advocacy Groups:
It goes into research funds to find a cure for Autism and yet the only reports that we ever get to read about the billions being pumped into these research projects; is things like ‘apples might cause Autism we are speculating this week,’ or ‘many genes are involved but after spending 20 billion we are still no further along the path to identifying them, than we were five years ago.’ Could that possibly be because they already know what causes Autism i.e. Genetic Predisposition and Environmental Toxins, (I haven’t got room to go into the scientific data backing this up today but I will at a later date). But this is all too taboo an area to delve into. Once again due to the very delicate Politics behind Autism.
Celebrity Endorsements, CEO Salaries and Autism Advocacy Groups:
Also Autism Advocacy Groups create substantial incomes for C.E.O.’s and smiling happy celebrities because as well as giving them a great social life, attending the Gala Balls, the Golf Tournaments and maybe even getting fit into the bargain (if you are a celebrity who likes to do the odd mini-marathon etc.,), they also get to re-endorse their saint-like image.
PR Groups, Campaign Support Groups and Autism Advocacy Groups:
Most high profile charities must hire an experienced PR firm to keep everyone thinking they are great altogether and these don’t come cheap. Also they need to hire Administration staff to keep up the front and keep the charade going. Also they may get involved in the odd Media spat etc., due to flying a bit close to the wind with the truth sometimes and this requires hiring an experiences legal team. Also often charities hire a firm who are experienced at pulling at the heart strings and getting money in for any charity again they cost a nice few Euro’s/Dollars as the case may be.
Sponsorship from Branded Products and Autism Advocacy Groups:
A great campaign is things like collecting mobile phones in exchange for an item an autistic person will find useful such as a tablet or Ipad. You might need to hand in 250 or so mobile phones in exchange for the item. Everybody wins then. The Autism Advocacy group though wins all around. Second hand mobile phones can be sold for somewhere between 5 and 20 Euro each, so doing the maths 250 old mobile phones could bring in the Autism Advocacy Group anywhere between 1250 and 5000 per transaction. Then they will have a special deal with the supplier of the tablet etc., to get them at cost price. So they could be making 1000 to 4800 Euro profit per 250 mobile phones. That would be great if the money was going back to helping people with Autism but the reality is usually it doesn't.
Getting high profile companies to endorse Autism Advocacy Groups.
They need to get high profile companies to endorse them and thus increase their media presence which keeps up the illusion that they are a hard working charity who are doing great things altogether for children and adults with Autism. They do also have connections in Government and pretty much every field and there seems to be a total ethos of ‘you scratch my back and I’ll scratch yours, nod nod wink wink.’ This also ensures the Media cover things from a one dimensional angle always and anything that diverges from this image will be glossed over, stamped out and these people will be put back into their box lest anyone might start listening to them and start getting weird notions like actually doing something to change the Status Quo and actually make things better for people with Autism.
So that my folks is a little snapshot into the Politics Behind Autism but not a complete picture by any means. For that one would to write a couple of books on the issue. At present I am in the process of editing one such fiction book, inspired by all I have learned so far and on using my research to date i.e. Raindrop Window.