Autism NI/PAPA - a charity exposed

Autism NI/PAPA  is a Northern Ireland based charity/non-profit organisation which believes it is the "voice" of autism in the region.

What is it, what does it do? I have asked myself this for the past decade since my child was diagnosed with autism. Lets face it, they aren't exactly the most well known autism charity in the world, in fact many parents in Northern Ireland have never heard of them. Yet, one would be amiss not mentioning them.

Autism NI have a lot of staff and they seem to have lots of money. At first glance, it would appear they might be doing something useful. No charity could be in existence for 20 years as well as maintain the money required to survive right?   One would assume that no charity could have the same CEO, for so long (together with their other long standing members) and not be top of their field in knowledge about the condition.

Apparently Autism NI has 18 support groups across Northern Ireland. I am sure that two of these groups (because I checked) and possibly more are not real groups, and that in fact they are defunct. I don't know what constitutes a group in the eyes of Autism NI, maybe a phone line in someone's home is a considered a "branch".  Its hard to know because Autism NI uses a central phone number connecting to their Knockbracken Healthcare Park office, making it difficult to actually speak to anyone outside of headquarters. One would think they don't want parents to connect with each other except through Autism NI staff.

At the helm of Autism NI is their committee, the same committee who made the decision to accept an award (after submitting a well thought out application) of 25,000 pounds from pharmaceutical company Glaxo Smithkline last year. What interest does Glaxo have in our children who have autism?


You can see from this link (http://www.corpwatch.org/article.php?id=15208) what Glaxo Smithkline have been accused of lately and its not good.

Autism NI regularly post employment opportunities, many funded by health trusts. Some of these positions seem to be four or even five jobs rolled into one. This, coupled with the fact that the remuneration on offer has been notoriously low (especially for positions inviting parents who want to work part-time)  has never enticed me to apply. What put me off even more was the blurb at the end of one of these recent job descriptions entitled pressures inherent in job. Under this heading one of the inherent pressures was listed as "dealing with the raised expectations of families".

Considering I have raised expectations for my cat, much less my child, I am confused by this. I did not know that the "raised" expectations I have for my child was a problem that had to be "dealt" with.

In the same job description (autism resource officer NHSCT) is the following paragraph: "co-operate with all AutismNI staff in maintaining good relationships with outside agencies and the general public in order to uphold the Charity's image and win increased support for its work...ensure that your conduct within and outside AutismNI Central Office does not conflict with professional expectations of AutismNI." I smell paranoia.

One of my biggest difficulties with this charity is they seem to be considered the "go-to" group where autism is concerned in Northern Ireland. Got a problem? Go to Autism NI". Most of the Health Trusts provide them with substantial monies that could and should be given to other organisations that at least have a modicum of knowledge about the breadth of early intervention as well as current international research.

Autism NI is well funded and collects money for autism across Northern Ireland. It is supported by many MLA's, most of whom haven't a clue about autism but who seek votes by appearing to be supportive.  While parents are shouting from the rooftops about lack of services or inadequate provision, Autism NI does not.

For parents of children who have ASD, the internet can be a lifeline, affording easy and quick access to a plethora of information from around the world.  Autism NI's website doesn't post much if anything about informing and empowering parents regarding the condition. don't see anything that would empower a parent. 

I saw a lot about an Autism Act though. There is a facility on their site to sign your name as part of an e-petition yet it has less than 600 signatures. Less time on an Autism Act and more time on real bread and butter issues like improving services and support service would be much more helpful. But yet, why would AutismNI do that? Why bite the hand that feeds. If you have to schmooze politicians to support you, you are unlikely to accuse them of being ineffectual. All that lovely money might go astray if those in the Department of Health suddenly decide they don't like you anymore.  That's politics in Northern Ireland, that's politics everywhere. It's absolutely nothing to do with getting help for children. Pays the salaries though.

Lobbying for an Autism Act is a safe option, an easy option and considering it hasn't happened yet who cares? How much has the lobbying for this act cost? It's wonderful having rights, but rights to what? We don't we have the infrastructure yet for rights. More importantly how much has the lobbying cost and where did the money come from?

The hard work that really needs to be done in Northern Ireland involves a tough examination and overhaul of existing services. We need experienced and trained individuals who are going to do the work, and a strategy to tackle the societal ignorance about autism.

I had hoped that following Autism NI's trip to Washington in 2007 together with its entourage of 12 that something useful would have come of the trip, something that could be seen at street level, by the average J. Bloggs. I haven't heard much about the outcome of this trip in 2 years, though there are some pretty pictures on the website of people from AutismNI and local politicians posing in Washington.

Only one of the many MLA's who attended (John McCallister, South Down) bothered to register  his interest regarding this trip with the Northern Ireland Assembly. (a legislative requirement)

No one knows if the various politicicians paid their own fare to go to Washington, but if AutismNI did pay for their trips, we should have been told, particularly if public fundraising was used to pay for it. See here: (http://www.niassembly.gov.uk/members/expenses/register2.htm)

Why wasn't the National Autistic Society invited to attend Washington? Was this trip just a schmooze fest for AutismNI and carefully selected politicians?

Illuminating comments from AutismNI CEO Arlene Cassidy on the NAS/AutismNI relationship were made here ( http://www.niassembly.gov.uk/health/2007mandate/minutes/2008/081113.htm ).

Carmel Hanna SDLP, asked Arlene Cassidy why there was no support or relationship between AutismNI and the NAS. Arlene said she didn't know. After she asked the question, Ms Hanna  apologised and said she did not "mean to be contentious". Why would a simple question, an important question like that be contentious? Perhaps she knew the answer to that question already but was afraid of stepping on AutismNI's toes. I don't understand why an MLA would preface her question with an apology. But mostly, no answer is forthcoming as to why the biggest autism charity in the UK and Northern Ireland's "own" charity dont work together.

If anyone has an answer to this, maybe they could respond. I think the answer lies in AutismNI's website pages about their 'history', where they air their dirty washing about themselves and the NAS. The web page states that a deal was brokered to keep the NAS out of Northern Ireland in the year 2000. Huh? Well, again, I can understand this. Lots of lovely money up for grabs and what is the point in sharing when you can have it all to yourself. Pity the NAS was so wimpy though.

Getting back to the AutismNI 2007 Washington trip, this would have cost at the very least 15,000 GBP (providing they flew in the cargo hold) and that kind of money would have gone a long way towards better wages for AutismNI's  support staff. In fact, for anyone who has the time, perhaps you could contact the Charities Commission and ask them how to go about getting a copy of AutismNI's budget for 2007, or for 2008. AutismNI has recently asked for almost one million pounds to fund autism staff and programs in Northern Ireland, much of that money slated for wages. Yet their wages, particularly for some support staff is barely minimum wage.What do they do with all this money?

Here is the link: (http://www.pfgbudgetni.gov.uk/autism_ni.pdf)
I think we have a right to see this information. Let me know if you find anything out, particularly if you find out who paid for the USA trip. Charities should be transparent and those as big as Autism NI should be transparent, informing their members where the money comes from and goes.

It's very confusing this AutismNI. First it was called Parents and Professionals Autism (PAPA) then AutismNI, but also known as Autism Ulster and finally, coupled with their linked company Autism Consultancy and Training the charity might be called PAPAAUTISMNIAUTISMULSTERACT. I can't see that Autism Ulster is going to go down too well in certain parts of Northern Ireland though.

A final word about AutismNI. In their current e-bulletin (link here: www.autismni.org/news/ebulletin%20janfeb09pdf.pdf) on page 7 is an explanation of an upcoming study they intend to carry out raising the issues of vicarious trauma (from the Troubles) and autism. Sorry, but this is the lamest attempt I think I have ever seen to link autism to something else. According to "experts" autism may be caused by:

faulty genes
men who dont like large women
watching too much television
lack of vitamin D
too much rain
single sperm donor

and now wait for it - the Troubles

Have you made your application to the Victim's Commission? How many times have you heard victim and autism in the same sentence. A google search of autism victims throws up 1,190,000 hits so maybe AutismNI is ahead of its time after all? It's bad enough that republican break away groups are fomenting violence in Northern Ireland again. Now it seems AutismNI wants to get in on the act and wrack up old wounds in the name of autism! Time for parents to wake up and stop letting groups and individuals make money and a name for themselves off the back of our children's diagnosis.

If you are unhappy about anything to do with autism in Northern Ireland, I am afraid that if you want positive change, it is you who will have to do the hard work. Relying on others has to date, achieved very little. Classroom assistants and Statements of SEN  have been and will continue to be cut (see Belfast Telegraph 13 March 2009) Choice on how to have your child educated is almost non-existent, with many children relegated to and cloistered in "special" (not so special) schools.

If your child has autism and you rely on AutismNI or any other group to do anything for him or her, s/he will still have autism 20 years from now. Yes, they will have been given a lot of party balloons and autism bracelets, you will have been offered endless cups of sympathy tea and cream buns, but your child, now an adult will face the same uncertain future as those born 20 years earlier.