The Voice of Autism in Northern Ireland

AutismNI, 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.

AutismNI have a lot of staff and they seem to have lots of money. At first glance, it would appear they are doing something useful. No charity could be in existence for 20 years with that kind of money (I think they have 24 staff now, maybe more) and not be doing good work. No charity could have the same CEO for so long together with other long standing members and not be top of their field in knowledge about the condition right?

There are other charities I have worked with in Northern Ireland, namely the NAS (National Autism Society) and the Aspergers Network. I have had tangible help from both of them, particularly the Aspergers Network (despite the fact my child does not have a diagnosis of Aspergers) AutismNI, however has never been of any help to me - maybe it is the relentless fundraising they do, (there are at least 15 links on their site to donate/bequeath/fundraise or purchase something), or maybe its the fact that no information on their website was of any use to me. The acronym IEP does not appear to exist on the website, nor does the word tribunal or judicial review. Voluminous research and studies are published every day regarding autism, so much that it would be difficult to read it all, but AutismNI doesn't seem to know about it, or want others to know.

Neither the NAS (the UK wide Autism Charity) or the Aspergers Network are mentioned on the site. Yet, 'Irish Autism Action', and the 'Scottish Autism Society' are. Why would I contact these organisations when representatives of the biggest Autism Charity (NAS) in the UK are local?

Apparently AutismNI 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 AutismNI, maybe a phone line in someone's home is a group. Its hard to know because AutismNI 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 the vehicle of AutismNI.

At the helm of AutismNI 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. Now, many parents do see a connection between large pharmaceutical companies and the rise in autism, so maybe AutismNI was happy to receive an award from a company that might help keep bums on seats in AutismNI. Who knows what the reasons were but from the viewpoint of this parent, this was very bad form altogether. I am surprised that parents who are members of AutismNI have not howled about this, particularly parents who suspect, instinctually believe or who know that vaccinations caused their children to develop 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.

Why would an autism charity of all things, accept funds from a pharmaceutical company that produces vaccinations? If this produced even the slightest chance of alienating potential members or besmirching reputation, why do it?

AutismNI regularly posts 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 suiting parents who want to work part-time) and this 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 what this means. 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 have never seen anything like this in a job description before. Are cctv cameras placed in AutismNI staff homes? I detect a real fear based paranoia going on here.

I think there are a lot of issues with AutismNI. It might consider itself to be the voice of autism in Northern Ireland but has this been achieved by the silencing of the collective voices of parents and individuals who have autism? AutismNI is well funded and collects money for autism across Northern Ireland. It is well supported by MLA's and is accorded respect by other UK autism groups and charities. Where parents are shouting from the rooftops about lack of services or inadequate provision, AutismNI does not shout, either via its website or via the media. I have been to meetings in various parts of Northern Ireland, attended by parents who were at their wits end regarding services and the general terrain regarding autism in Northern Ireland. Many of these parents were very vocal. AutismNI was not.

For parents of children who have an ASD, their computers can be a lifeline, affording access to information that simply cannot be sought otherwise due to time and mobility constraints. I dont see information on how to stay sane as a carer, nor do I see any ideas on how to write OT and SLT into a child's statement. I don't see anything that would empower a parent, only links to others that might. With the amount of staff at AutismNI, one would think their website would offer parents more to work with, more useable information. It wants to be a one-stop shop, but for many parents, I can't see them being anything but the last stop.

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 taking service providers to task would be much more helpful. Lobbying for an Autism Act is a safe option, an easy option and considering it hasn't happened and won't happen in the immediate future, who cares? How much has the lobbying for this act cost? It's wonderful having rights, but rights to what? We don't have the infrastructure yet for rights. My child currently has a statement of educational needs which is supposed to accord him rights, and even that has failed.

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

Considering AutismNI is employing people with funding received from Health Trusts, the same people who are responsible for delivering many existing services, I guess that is not going to happen anytime soon. Don't 'bite the hand that feeds you' springs to mind.

I had hoped that following AutismNI'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 havent 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 politicans posing in Washington. I am not aware that anyone from the National Autistic Society was invited to go, or indeed did go despite the fact they have been in existence in Northern Ireland now for the past 4 years or so. Only one of the many MLA's (John McCallister, South Down) registered their interest regarding this trip, with the Northern Ireland Assembly. We don't know if the various political parties 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)

On another note, Illuminating comments from AutismNI CEO Arlene Cassidy were made here ( http://www.niassembly.gov.uk/health/2007mandate/minutes/2008/081113.htm ) when Carmel Hanna asked Arlene Cassidy why there was no support or relationship between AutismNI and the NAS. Arlene said she didn't know??? When she asked the question, Ms Hanna (MLA) 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 dont 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?
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 to funding a few children's classroom assistants or bumping up the low wage that AutismNI pays its 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 for that matter. 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 near enough minimum wage.

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 who have a website and large membership should place their Annual Report online. And while you are at it, maybe you could find out if AutismNI is actually called AutismNI or if they are really called Autism Ulster and if so, where the monies raised by AutismNI actually go, i.e. AutismNI or Autism Ulster.

Its 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

This is a joke and I dare AutismNI to try and fund and roll this one out as credible. Should I start my application to the Victim's Commission anyway? 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 special education need 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 with ASD's being 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, he will still have autism 20 years from now, only difference is he will have seen a lot of balloons and you will have drunk a lot of coffee.