Money for Nothing

You no doubt remember fundraising appeals from third world charities asking you to sponsor and give money to the ‘poor’ children of Africa with images of sorrowful little faces on begging boxes and cans, underscored by patronizing and trite appeals to your sense of sympathy and justice…AutismNI/AutismUlster’s public relations team have copped on to the power of ‘feeling sorry’ in their recent fundraising campaign. Nothing like using pain, unhappiness and pity to get what you want.

Instead of the ‘poor black babies’ of Africa, their focus of course, is our own ‘poor little autistic’ children.

Here is an excerpt from their ‘gifting’ postcard. For those of you who have not paid your membership to AutismNI/Autism Ulster, you will not have sight of the offending article. It features the photo of a child who allegedly has a diagnosis of ASD. The writing underneath his photo states, -

“This child has a diagnosis of autism. He may never develop language, is unable to relate to the outside world in a meaningful way and gets upset when taken away from familiar things. He also does not sleep well, will only eat certain foods and is very sensitive to noise. This is Autism. (Is it?)

Arggggghhhhhhhh ….it goes on….(am retaining this postcard for future posterity - i will show it to my children when they grow up and tell them what some people 'used' to think of their brother. )

“But you can help! Through your support we can provide effective services to families who have a child with Autism and can enable the 20,000 people in Northern Ireland affected by Autism to become valued members of the community.”

(Interesting to note that AutismNI/Autism Ulster has had 20 years to do this so far, and it still hasn’t happened.)

On the reverse side of the postcard suggested donations are outlined : -

£4.00 – will pay for an information pack to be sent to parents of a newly diagnosed child
£20.00 – will support our parent/user helpline
£30.00 will pay for a counselling session with a family support worker.

(£50.00 will pay for an ox, a goat, a chicken coop – you get the picture)

Considering Health Trusts already fund AutismNI/Autism Ulster for many of their helpline/counseling workers, I don’t understand the need for more money in this regard.

But, let’s get back to the language used by AutismNI/Autism Ulster to describe autism. Don’t you just love it when the word ‘never’ is used regarding our children. Self fulfilling prophesies abound regarding our kids and feed the autism industry no end. Who is AutismNI/AutismUlster that they know anything about the possibilities of our children?

The description of autism here is offensive in the extreme. Instead of dwelling on impossibility, (for which there is no such thing regarding our children) they could have said, ‘he WILL develop language if only we could get it together to get our finger out of our proverbial and provide a concerted challenge to society to change their beliefs about our kids and lobby for programs (and not expensive autism bills) that are individualized and tailored to the specific child and his family.’

It begs the question of what is the point of contributing your hard earned cash to this charity if they believe our kids are lost causes. Autism is treatable, and recovery from autism is possible. AutismNI/AutismUlster promotes a self fulfilling prophesy for our children and seems to be expecting you to pay for that. Why? If our kids are so hopeless, why bother?

They could have said, ‘this child relates to the world in a different way, one that is fascinating, unique, authentic and totally within the ability of society to understand, if only they would shuffle off their skewed beliefs about the importance of ‘conformity’, and what is ‘acceptable’.

They also could have said, ‘peer reviewed research around the world is consistently pointing to the environment as a possible causation of autism and your donation will help us fund quality research and a care pathway for children suffering from sleep disorders, gut dysbiosis, allergies and other physical correlations with an autism spectrum diagnosis.’ (Of course, when you have a charity who accepts money from huge pharmaceutical companies who ply drugs to our children and their parents, you aren’t going to bite the hand that feeds you!) AutismNI/Autism Ulster was very happy to accept money from Glaxo Smithkline here: http://www.autismni.org/news/pressreleases_view.asp?ID=25

AutismNI/AutismUlster, in my opinion, takes the low road in this regard. The biggest joke of this fundraising campaign is on the reverse of this card, where they state that AutismNI/AutismUlster ‘increases the quality and range of services available for individuals with Autism through training and education. Northern Ireland still provides one teaching program for our kids (TEACCH), no ABA, no Montessori, and limited funding for alternatives for home educators who want something specific to their children. Every year, talking heads from North Carolina TEACCH central come to Northern Ireland to drone on about the same old thing.

By now, we should have had many of our experts in this 'system' who could provide in house training across the province instead of having to spend thousands of pounds continually year after year.
Speech therapists are scarce (and often useless), sensory integration is virtually unheard of and autism specific schools, well that is another matter altogether. Meanwhile, in my opinion, parent members of AutismNI/Autism Ulster waste their time echoing and fighting for the political aspirations of Arlene Cassidy and her buddy Iris Robinson, wasting their time picketing the offices of certain political representatives who have eschewed the autism bill in favor of common sense.

‘Quality’ and autism services in Northern Ireland anyway, is an oxymoron. We need a good outcomes study of the millions of pounds already spent on so called autism training. Classroom aides in mainstream schools are wholly under-trained, if trained at all, parents get even less access to training unless they want to pay for it.

Meanwhile ‘our’ autism charity continues to tout our children as potential lost causes, making money off their backs and off their diagnosis’.

The fact that children all over the world are losing their diagnosis’ of autism doesn’t seem to interest AutismNI/Autism Ulster. Why would it? This should be on the front pages of AutismNI/Autism Ulster's web site. But no, not a dickey bird. Better to keep that kind of information hidden in case parents start to ask for more for their children.

Here is an excerpt taken from AutismNI/Autism Ulster's quarterly newsletter (Summer 2008). An article entitled 'Autism', written by a 15 year old girl explains her take on autism. As the article was vetted for the said newsletter by the charity, I presume the charity agrees with it as well. "Remember", she says, "Autism is a lifelong sentence and cannot be treated." Again, if that is so, why is it that on virtually every page of the newsletter does the charity beg for money for those 'untreatable' children? Why not just call for the blanket institutionalisation of all children with autism?


AutismNI/Autism Ulster appears to be working closely with Autism Initiatives (provider of group homes, etc) this is, in my opinion, a nice little number, a cozy airtight relationship – with one group guaranteeing the existence of the other. Autism Initiatives would not be building group homes all over the province unless they were sure they would be filled. ‘If you build it, they will come’ springs to mind. Continuing to use words like ‘never’ will ensure a steady stream of in-mates for these facilities.

AutismNI/Autism Ulster is proud of its 20 year history. I don’t know why. The only reason the charity has been allowed to flourish is because the statutory sector relinquished it’s responsibility to our children, favoring instead, to delegate the ‘problem’. AutismNI/Autism Ulster was ready and waiting to keep our kids in a holding pattern that now employs 24 staff.

In my opinion, the lack of, in fact the clear absence of lobbying by AutismNI/Autism Ulster for evidence based services and training in the province attests to this fact. The only 'lobbying' of the charity has been Arlene Cassidy’s autism bill. Politicians have realized how they had been duped, but moreso, how much it would cost, both in legal challenges and in rolling it out.

But back to the topic of this blog entry. Before you even consider giving one penny to AutismNI/Autism Ulster, please ask yourself the following questions: -

Is it ethical for the charity to fundraise from already financially overstretched parents, parents whose homes often break up with the breadwinner (husband) often leaving, homes where parents often cannot even work?

Are you sure where and for what the money is going to be used for? It costs a lot of money to pay 24 staff, money that could be used to actually lobby for real change in this province. With that many employees, the government should be inundated with demands for positive change for our children. We shouldn’t be in the mess we are currently in. Does AutismNI/Autism Ulster need money for more public relations, media and lobbying tables? Is anyone asking these  questions? Does anyone actually know or care how much the charity has spent on lobbying for the autism bill? Maybe Iris Robinson knows and should indeed be asked.

Could you do better? Could you start your own autism support group and elect someone to carry out research, a scoping exercise of services in Northern Ireland? Could you disseminate that research to the wider community for free? Could you fundraise monies from the lottery or from private patrons and use it directly for your children? I bet you could, I know you could. And I am sure you could do it without the need of employing 24 people.

AutismNI/Autism Ulster will never receive a penny from me until it starts demanding what my child needs as an individual first. To date I see nothing of interest on their website, in fact compared to the NAS website, it is a blank page. There is so much going on regarding autism in Northern Ireland right now with the RASD autism strategy – yet Autism NI/Autism Ulster remains silent.

I believe AutismNI/Autism Ulster has spent much time and money and effort lobbying for something I did not want, the government does not want, and something my child does not need. Instead of financing the political aspiirations of AutismNI/Autism Ulster with your hard earned cash, a simple phone call to the charity might be better. Ring them and ask them for their current financial statement and an explanation of how next year’s projected budget is going to be spent and how it will benefit your child. The worst that we, as parents can do, is to just assume. That is what the statutory sector has done for 20 years and that is why our children are living in this current mess.

The rot we currently face regarding autism, here in Northern Ireland does not solely rest with AutismNI/Autism Ulster. I am hopeful for the future though, as more parents are becoming aware, are being empowered and governments officials are realizing the error of their ways. Big things are afoot in Northern Ireland regarding autism and they have nothing to do with AutismNI/Autism Ulster or any other charity for that matter.

It’s an exciting time and should be embraced. The word ‘never’ is slowly being removed from the autism lexicon and the autism dinosaurs here are having to face their own extinction. To all the wonderful, astute, well informed parents I have met in the past 2 months, I say thank you and thank God for the opportunity to have met you all.

Nothing stays the same forever, even here in Northern Ireland! Exciting times are ahead whether you fund AutismNI/Autism Ulster's 'never' campaign, or not.