Where's Wally? - "Spot the Autistic"

Autism NI/PAPA , a Northern Ireland based autism charity have outdone themselves on this International Day of Persons with Disabilities by winning the booby prize for best stereotyping of autism as well as pissing off the entire autistic population of the world and their families.

Can you "spot" the autistic?
Autism NI/PAPA can help with that
(see below) 


He's the billy no mates, dressed in grey, with his gaze focused on the ground.
He doesn't need a phone because he has no friends and he's no one to ring anyway. He doesn't need a watch, because he's doesn't need to be anywhere soon.  He doesn't need sunglasses because he never goes outside (notice the pale complexion)

So, buy your autistic loved one, a colourful shirt, a mobile phone and sunglasses, get his hair styled and Voila!  No more autism!

link

         
         Non Autistics                                             Autistics

...are young vacuous males                             look like anyone else
...can afford to use                                                  
   Tom Cruise's dentist                                              
   and hairdresser

...are extras from "Glee"                                         
                                                                 
...live in California                                                  
   and like bright colours                                                                            
                                                                                   

The first ever "Spot the Autistic" Pageant will be held in Belfast on 

World Autism Day (2 April 2015)

1st prize:  Dinner with Tom Cruise & Dustin Hoffman followed by an
                 autism friendly private viewing of Rain Man

2nd prize: Spot the Autistic App for mobile devices

3rd prize:  3D X-Ray autism detection glasses


If you wish to contact AutismNI/PAPA charity yourself, to advise them that you have spotted an autistic, please alert them immediately at info@autismni.org. they have an emergency fashion makeover team anticipating your call.

An Open Letter to AUTISM NI

To: Autism NI

For the attention of Ms Arlene Cassidy, CEO

Dear Ms Cassidy

Re: Autism NI - A Cost Benefit Analysis ?

I refer to the above and note from my own calculations from your website (http://www.autismni.org/our-staff--board.html) that at least 15 paid staff are retained in your organisation.

From my calculation it appears that only four of those members would actually have any responsibility delivering services to parents and/or families. The majority of staff, as indicated by their job title appear to be fundraisers, administrators and event managers/lobbyists.

I would be grateful if you could explain the rationale of retaining such a large fundraising and administrative staff. I note from the website that Family Services provided by the charity together with other programs/services are extremely limited if non-existent.  The ratio of staff to service provision within AutismNI seems inordinately top heavy compared to other organisations who provide similar services in Northern Ireland. Very few charities in Northern Ireland would have AutismNI's administrative budget to pay these individuals' salaries, much less anything else.


Until the charities commission permits Freedom of Information requests to be pursued against charities, we the public will never really know what AutismNI receives in donations/government funding. In the interest of being transparent to your suppporters, however, I am sure you will agree that you should publish the charity's annual report on the website for the last fiscal year. Unlike the year 2009/2010, those accounts should be published in a way that is actually decipherable by the human eye.

My guesstimate is that together with your own salary which I presume is in the £50-60,000 per annum mark together with the combined salaries of your other staff members (including your parent liaison workers who probably make the going rate of minimum wage and or just above), the total amount in wages that the charity pays out per year is approximately £330,000 - £350,000. That estimate includes the potential payment of any wages to the Charity's President, David Heatley and the potential payment of services to one of your government lobbyists Eileen Bell. I don't know if the charity pays these people.

Can you explain what benefit is derived by families living with autism, considering the above estimated cost in salaries? Do you really need 15 plus staff to deliver almost no services? There are 10 charities that work directly with autism in Northern Ireland of which AutismNI is only one. There are a mulitude of other 3rd sector organisations that work directly and indirectly with persons who have autism, many of which do not have anywhere near the funding you have but who deliver a variety of regular and much needed services. What cost benefit is derived from the outlay of salary payment to so many staff?

I note last month (here: http://www.impartialreporter.com/news/roundup/articles/2011/07/28/394125-autism-charity-contract-terminated-by-trust-without-warning/) one of AutismNI's contracts in the Western Health Trust was terminated recently, 'out of the blue' as quoted by your staff member Paula Hanratty. The article states that "Autism NI had, over the years, secured and invested nearly £550,000 additional funding into the Trust area to meet the needs of families affected by ASD."  With this contract and others now terminated, it is difficult to know exactly what Autism NI does. Your website states that the charity has scores of support groups, many if not most of which operate themselves with parental administration. They do not require 15 of your staff to run them as I presume they run themselves and carry out their own fundraising. Some of these 'groups' consist only of a few parents around a kitchen table, and are in fact 'support groups' in name only.

I would be interested to have your clarification of the comment above relating to the £550,000 investment by AutismNI into the Western area Trust. I believe that AutismNI acted as a conduit in this area,  of government monies. The comment implies that AutismNI 'raised' its own monies. I think it would be more fair to say that the charity used publicly funded contract monies and re-invested them in the area. The money came from the government - Autisim NI simply spread it around. Would that be correct? The 'jobs' referred to, that were lost because of those cuts - could you clarify how much those 'jobs' paid? I note from the past that job descriptions emanating from AutismNI offered to pay parent liaison workers the minimum wage.

With the public purse being tightened, government contracts for services must now generally be carried out through a bidding process. AutismNI's contract was terminated because the Western Trust believed it could provide better services than AutismNI could do.  I also believe parents are demanding more from charities who purport to be 'helping' them.

Looking at AutismNI's website, I fear that parents are not getting the kind of help they need and certainly not help that is current or research based. I believe that despite the charities 15 staff members that AutismNI's helpline number is only open a few hours a week. Could you outline the number of hours of real face to face contact both you and other staff members have with children and families who live with autism? How many parents does the charity refer onwards to other organisations? Does the charity keep records of this? If so perhaps we the public could see these statistics. I should add that parents I know who have contacted AutismNI have been told to go to other charities and voluntaries or simply do not have their phone calls answered. Could you advise what those 15 staff members do during their day?

Two parent friends of mine have asked me to publicise their 'experience' with Autism NI. They both have young children with ASD and both of them had to seek help elsewhere than Autism NI because the charity could not help them and they were referred onwards.  I told them I would wait for your response to this letter.

An immediate publication of AutismNI's annual report outlining it's funding and expenditure for the past year is well overdue. Please publish this on your website.

I and I am sure others would like to know and understand what AutismNI, as a charity, spends its money on. I presume that the charity developed and spent money on its new website to indicate to parents and individuals with autism the services and advice it provides to them. After looking at the website it does not appear that much if anything is being provided by AutismNI particularly in light of the number of paid staff it retains. Cancelled contracts in the Western Trust together with other funding being pulled across the North begs the question what AutismNI as a charity actually delivers, particularly in context of it retaining so many staff members, all of whom must be paid.

There are strict guidelines that will soon be set in place by the NI Charities Commission. There is a distinct line between a charity and a political lobby group, an explanation that in part, can be seen here from the Charities Commission website: (http://www.charitycommissionni.org.uk/Charity_requirements_guidance/Your_charitys_activities/Campaigning/Guidance_on_campaigning_and_political_activities.aspx#l2)

"D3. Can a charity have a political purpose?
The short answer
A charity cannot have a political purpose. Nor can a charity undertake political activity that is not relevant to, and does not have a reasonable likelihood of, supporting the charity's charitable purposes.


Whilst a charity cannot have political activity as a purpose, the range of charitable purposes means that, inevitably, there are some purposes (such as the promotion of human rights) which are more likely than others to lead trustees to want to engage in campaigning and political activity. (See section D4 for information on including campaigning and political activity in a governing document.)


In more detail
A charity cannot have political activity as any of its charitable purposes. This is because a charitable purpose should fall within the description of purposes set out in the Charities Act (Northern Ireland) 2008. However, political activity can be carried out by a charity to support the delivery of its charitable purposes. In order to be a charity, an organisation must have purposes which are exclusively charitable and for the public benefit. An organisation with a political purpose, such as promoting a change in the law, legally cannot be a charity. This applies even if the organisation has other purposes which are charitable. This would involve looking at 'political' questions, which neither we nor the courts are in a position to answer. Constitutionally, it is not possible for the Charity Commission for Northern Ireland or the Courts to make decisions about whether a change in the law or Government policy would be for the public benefit. However, organisations which are established to ensure that the law is observed, for example respecting certain fundamental human rights, will not automatically fall within this definition. This is a complex area and in future years we will explore with charities established for the advancement of human rights, the boundaries of this particular charitable purpose in relation to campaigning and political activity."


The fact that AutismNI retains the services of the President Mr David Heatley and Ms Eileen Bell as a political lobbyist is questionable. Mr Heatley and yourself are well known to MLA's and to Stormont as is Ms Bell. Mr Heatley as far as I know does not deliver programs for the benefit of your members or for the wider 'autism' community. As President of AutismNI, is Mr Heatley a paid member of staff. Do you pay Ms Bell a wage for her lobbying services to the charity? How many other members of staff of AutismNI are paid a wage and in what context of providing services to the community? What is your definition of a charity? What provision to families living with autism does the charity currently provide and how much of the charity's budget is fixed for that purpose compared to its administrative costs?

These are questions that should have been asked well before now, and that should be now be answered.

I look forward to your timely response.

AUTISM NORTHERN IRELAND



for further information see : www.fakecharities.org  and in particular this page: http://fakecharities.org/database/shelved-reports/  which lists AutismNI as a charity whose reports are not published or whose accounts are not available and/or do not detail its public funding.

Mother, can you spare a dime, or rather £450.00?

Autism Ulster/Autism NI together with an events company are organising an autism conference for July 2010 in Belfast (after a full month online, the link to the conference is inaccessible (under construction) - maybe AutismNI read this blog and are rearranging their fee schedule to make the conference accessible to parent/carers?)

UPDATE: 26 AUGUST 2009 - the site is back up and running and as expected, the fees have been reduced by at least half with a special rate for parents.

UPDATE: 2010 - The Conference is cancelled altogether - no surprises there then.

If you have £450.00 to spare, you can attend this two day event. If you book early or if you are selected to present a plenary session you will save £100.00. I do not understand why AutismNI/AutismUlster with their 24 staff had to hire an events company to organise this conference as surely that many staff should be able to prepare a conference with ease.

Extraordinary fund-raising efforts from parents like these (see: http://www.tyronetimes.co.uk/2617/Mum-tells-of-daily-battle.5280054.jp) will help AutismNI/AutismUlster pay the bills from the events company and more.

Yes, I know, what you are all saying - it's appalling that AutismNI/Autism Ulster takes money from parents like this. Maybe the mum insisted or forced herself on AutismNI/Autism Ulster? Maybe they just 'couldn't' say no? If we had statutory bodies who did their job, parents wouldn't be used like this.

Last weekend, PEAT (Parent Education as Autism Therapists) presented a comprehensive two day ABA conference (applied behavioural analysis) and brought some of the biggest names in the world to Belfast at a vastly reduced fee compared to the proposed AutismNI/Autism Ulster 2010 conference. (£60.00 for parents) The PEAT conference was well attended by parents and provided real help to those who want to 'intervene' their children's autism with ABA. PEAT is not well funded, is relatively new to the scene compared to AutismNI/Autism Ulster but has managed to give parents tangible and sustained advice and assistance that no one else in Northern Ireland ever has. Whether or not you agree philosophically with ABA or not, at least PEAT is doing something different and provides an avenue to parents to meet their children's individual educational needs through precision teaching.

PEAT's name and website links have been added recently to the AutismNI/AutismUlster site (though you do have to scroll through their links page to find it). Unlike the other 3 autism charities in Northern Ireland (NAS, Aspergers Network and Eagle Project) PEAT must have found favour with Autism NI/Autism Ulster.


I would ask the mother referred to in the weblink above how she thinks raising £2500.00 and giving it to AutismNI/AutismUlster is going to benefit her son. I wonder if some of her fundraising might be used to permit admission for a few parents to the upcoming conference. £2500.00 will pay for five parents to attend.

'Company Store' springs to mind here. I also wonder what the membership of that charity think about the fact that most of them will not be able to attend the conference their membership fees and annual fund-raising efforts have paid for. Nice.

Maybe members of the charity know what happens should they speak out and question the status quo. 

If you thought you and your family were isolated with autism before, try getting on your soapbox at your local AutismNI meeting and watch for the crumpled faces of your fellow parents.  Northern Ireland is like a wee village, it won't be long before the gossip evolves and you attract 'troublemaker' as your first name.

Back to this young mum and her Great Wall of China idea - will the money she raises be used to provide her son with direct services or will it be scoffed to fly more MLA's off to Washington? I note in the linked article about her, that Michelle O'Neill (SF) has a few comments to make about how difficult it is here in Northern Ireland - as she was one of the selected MLA's to attend the December 2007 AutismNI/Autism Ulster junket to Washington, maybe she could tell us how the Washington junket benefited children and adults with autism.

Maybe she would like to give this young mum back, the money it cost to fly her, wine and dine her, in Washington? What about it Michelle? Put your money where your mouth is. I distinctly remember talking to Michelle O'Neill about autism years ago and in the middle of our conversation she related to me how 'she had children'. I never did figure out what relevance that had to the issues I was bringing to her. That was pre-Washington. I presume she is clued up now?


Back to the conference...on it's web site linked above, AutismNI/Autism Ulster make a number of references to how beneficial the 2010 conference would be to parents and carers. I suggest any parent interested in attending, to ask your mortgage company or the housing executive to stall your payments for one month so you can attend this conference. Failing that, you could of course save 9 weeks of your Carer's Allowance or a month of your child's DLA in order to attend or apply for a carer's grant - that is if you really want to - the line-up of speakers are rather ho-hum and it begins with Gary Mesibov.

AutismNI/AutismUlster, have been instrumental in continuing to promote the TEACCH Program (Treatment and Education of Autistic and related Communication-Handicapped Children) in Northern Ireland. To that end, this conference will feature Gary Mesibov of TEACCH et al. What we as parents have to learn from Gary Mesibov is beyond me.

The acroynym 'TEACCH' sounds like the word teach, but this program has very little to do with teaching/education/learning and nothing to do with autism.  The idea of paying £450.00 to listen to Mesibov drone on once again about the marvels of robotising our children is anaethema to me.  Surely some parents in Northern Ireland have read the comments from Patricia Howlin and others about the lack of efficacy of TEACCH.

TEACCH is of course, lucrative and for Autism NI/Autism Ulster, it has been a good earner via the charity's dedicated company 'ACT'. Teachers like it because it fulfills their generally self fulfilling prophesies about our children ('these' kids can't learn, but they love routine, why bother educating them; they haven't learned the way 'we' teach them, it's their fault, we tried, they are stupid, lets control the damage via TEACCH; let's book a refresher course costing thousands of pounds via AutismNI/Autism Ulster so no one can claim we aren't qualified in how to damage children - most of all never EVER let the parents think their child is capable of learning otherwise the flood gates will open!)

Compare this to some of the more informed and pro-active parents in Northern Ireland who hire autism consultants from abroad, recruit their own dedicated staff, train them, and run full time education programs for their children in their home every day generating copious data collection, weekly reviews, video footage analysis and some of whom attend 3rd level and post graduate studies in ABA/VB/Autism studies) . The 'why bother' mindset of the TEACCH promoters guarantees children will grow up to live dependent or in a care homes.

No one knows where a child will go unless all possibilities are pursued. In Northern Ireland, minds have been made up about our children and one thing is guaranteed, if you don't 'do the work' with your child, s/he will suffer for it just like any other child. Be a parent first, rely on no one.

You could of course attend the conference and ask Mr Mesibov and the organisers what exactly TEACCH has done for children here. No positive outcomes, however,  have ever been peer reviewed by the TEACCH organisation and their philosophy has not changed one iota in decades. (that autism is a 'culture', that individuals with autism 'like', 'thrive', 'need' routine, etc bloody etc.
The TEACCH program was developed to keep little 'handicapped' children quiet. Please note that the word handicapped still remains in the acronym of TEACCH. In fact the english equivalent of the TEACCH program was until very recently called the 'Society for the Autistically Handicapped'. What are the belief systems of those who subscribe to such language?

A simple google query of 'new autism research' will provide over 1.9 million links, none of which include using the TEACCH method.

TEACCH is about damage control, keeping our children functionally autistic, ensuring a new generation of care and group home employees.

I recently asked the principal of a large 'severe learning disability' (ugh) school to tell me what the outcomes are for kids who make it to mainstream from the school. This individual replied '1 in 20'. I was not surprised. This school uses TEACCH, as do all of the special schools here. The attitude of this individual towards me was patronising and clearly my question was an uncomfortable one. My question was eventually answered but only after much speculation to my motives for asking it. ('oh no, another parent in denial who thinks her kid can learn' and even worse, that thinks I should be able to teach him).


I hope that any parents who intend on attending this conference ensure they get a substantially reduced or free admission. There is no mention in the link to this conference about a reduction for parents, except that if you book early you will save a bit of money.

The conference is not for parents. AutismNI/Autism Ulster changed it's name from PAPA (parents and professionals autism) for a reason. If you want to keep parents out, you charge whacks of money to get in.

Those who will be attending this conference will be "professionals" looking for a couple of days away from their desks, and whose budgets can pay for it.

Researchers and bright minds in autism are not going to attend this conference, nor have they been invited. AutismNI/Autism Ulster clai this conference as 'one of the most important international conferences dealing with autism in 2010'. Perhaps this is so, but only in Ballybackward, not the world.

There will be hundreds of conferences regarding autism in 2010 all over the world, with attendees who are at the top of their research field. AutismNI/Autism Ulster is not in any way known for its research capability, their website is one example of that, and anyone who has something new to share in the field of autism will be hard pressed to take the time or make the effort to come to this conference. Why would they? Researchers needs peer review, their peers won't be here. AutismNI/Autism Ulster does not have the capability to scrutinise research, much less provide its dissemination.

'Smoke and mirrors' conference would be a better title. Here is a list of some other autism conferences taking place in the coming year, all at a substantially lower price and with better line-ups than the one described above. see: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=140&a=5891 .

I would suggest to parents that we present our own conference, the line-up made up only of parent experts. If we charged £450.00 a head, we could raise enough money to initiate the construction of a new autism specific school or send us all to Washington on an autism fact finding junket, one that would actually amount to something more than than a photo shoot.

Autism in Northern Ireland

A lot needs to be said and done about autism in Northern Ireland. The problems that individuals with autism face here can be attributed to a system that is not working, and never could work.

Northern Ireland is experiencing severe intransigence and ignorance regarding autism despite millions of pounds being thrown around and compared to the rest of the United Kingdom, it's a poor cousin.

Constructive criticism of all issues surrounding autism in Northern Ireland is well overdue as is the need to shuffle off the incestuous relationships that have evolved between those providing services, namely voluntary/charity organisations and the government.

Government money (yours) has been provided to charities for years but I do not see the effect of that money. What I do see is large charities with lots of staff, lots of bluff and children and families as desperate as they were 20 years ago, for services, information and understanding.