Middletown Centre for Autism - Funding Cut

SPECIAL NOTE:

A number of individuals (you know who you are) have contacted me anonymously with some very interesting facts and figures regarding autism/advocacy/politics/issues in Northern Ireland. If you are reading this I would be grateful if you would consider contacting me again. The fact that you felt your voice could only be heard anonymously, that you had to protect your identity (and ultimately your children's identity), says a lot about the state of affairs in Northern Ireland.

I detect a level of fear and intimidation felt by some parents to speak out against the status quo. One of you even intimated the fear of litigation being lodged against you if you expressed your real opinions. This is appalling. I doubt very much that you are the only people in the North who feel this way.

I would put to you that instead of fearing litigation that you consider instead the possibility of lodging a class action versus the government/voluntary sectors for dereliction of duty towards your children. Parents have a right to their opinion, and to voice that opinion. Parents are experts regarding their children's autism and are their only real advocates. Every parent has a right to have their voice heard, and a right not to have their voice superseded by anyone else. I urge parents to speak their minds about what is happening to our children (or not happening). I also implore anyone who has received a threat of litigation or intimidation, either in writing or verbally, regarding speaking out about your child's treatment or your own, regarding autism, to not remain silent about it.


As an aside, this ( www.youtube.com/watch?v=vBgfDLnQyIk ) is a good example of what an autism rally should look like and an example of parents making their voices heard. We have 1.75million people in Northern Ireland. Apparently, there are 17,000 children and adults on the autistic spectrum. They and their families amount to a lot of people. Where are their voices?
(http://www.belfasttelegraph.co.uk/news/health/17000-people-with-autism-here-lsquoare-getting-raw-dealrsquo-14046146.html)

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The Middletown Centre for Autism idea is for now, on the shelf. The Southern Government recognised their folly (albeit 7 years too late), and cut their losses in this white elephant project. They have bigger projects to worry about like the Monaghan/Derry road that is going to cost 459 million euro.

In its 20 May 2009 coverage on the autism funding cut, RTE's website stated that "Today Mr O'Keeffe will confirm that the Government wants to pause on funding its share of the next phase. He will tell Ms Ruane the decision is due to the budgetary situation and for now he has no room to manoeuvre. A much more expensive plan is the proposed motorway project from the Monaghan border to Derry. The Government has promised £400m (€459m) for the work. So far there are no plans to pull back from that commitment."( see: http://news.ie.msn.com/article.aspx?cp-documentid=147424549 )

Roads generate money. Autism depletes money. It's a no-brainer really.

For those of you who are not familiar with the Middletown Centre for Autism, it was a joint North/South Initiative ostensibly created to promote 'excellence' in autism, via a centre, a complex, where children would come from all over the country to avail of specific services.

The idea was formally launched in 2002, and seven years, and 7 million pounds later, the fate of this centre looks pretty much sealed - and not going ahead. Catriona Ruane, Minister for Education responded with her infamous bullish take on things, and says she is going to push it through regardless, even though no one, including her, knows where the money is going to come from. With elections coming up, every head counts, and I fear Sinn Fein, so fond of their cross border initiatives, see a loss of votes over the funding cuts. I haven't heard anything clever regarding autism, being uttered by Catriona Ruane yet, and I hope her sputtering is short lived. The fact she wants to water down the definition of special needs and make it even more difficult for our children to obtain help gives me no confidence in her whatsoever. See: (http://www.theyworkforyou.com/ni/?id=2009-05-19.4.1) for a run-down on her plans for the special needs budget. Her 'insistence' regarding this centre serves her party, not my child.

If you have never heard of the Middletown Centre,

(or the 1. Middletown Centre for Autism Excellence, or the 2. Middletown Centre of Autism Excellence, or the 3. Middletown Centre for Autism Promoting Excellence or the 4. Middletown Centre of Autism Excellence),

you would be in good company. Despite its many names, the secrecy surrounding the centre has been akin to the G7 talks. For the past seven years, parents have been asking questions, but to no avail. Parents were not informed, not consulted and not invited to participate in the development of this centre. It was a purely us (professionals) vs them (parents/children) approach. This article ( www.sinnfein.ie/news/detail/23456 ) sums up questions that continued to be asked by parents throughout the past seven years and which still are not answered.

The seven million pounds spent on this centre so far seems, in light of the other recent news stories, to have fallen into the backdrop. Sexual, physical and emotional abuse of children by the Catholic Church, together with the Parliamentary Speaker and expenses rows consumed the autism story. It was a one day wonder and I have not seen mention of it again. Considering the institutional abuse in this country of vulnerable children in the care of so-called pastoral caretakers, Catholic 'teachers', I wouldn't send my dog to Middletown. My child will never be out of my sight.

Further, the belief systems of those who hatched up this idea are reprehensible. Our children, those who have been failed by the educational/social systems and who may have naturally developed distrust and fear, culminating in the dreaded 'behavioural' problem, would be tagged and unceremoniously whisked away to an autism de-programming centre. The mind boggles - I imagine retired teachers, 2nd year psychology students and general do-gooders with no children of their own but with letters behind their names, projecting all of their negative beliefs on our children (you are bad, which is why you are here; you don't fit in, which is why you are here; we are right, you are wrong, which is why you are here; we need to justify our hefty salaries and seven million wasted pounds which is why you are here!) What must the rest of the world think of us? Present this scenario to parents in the USA and they would recoil with horror.

Ruane tried to make links between this proposed centre and the TEACCH centre in North Carolina, in her Stormont speech on special needs (www.theyworkforyou.com/ni/?id=2009-05-19.4.1 ) This was an interesting comparison, considering the TEACCH program comes with a set of particularly odd and negative belief systems as well. Considering TEACCH is the only intervention strategy used in the North, these comments were illuminating. There has always been a connection between the TEACCH centre and the autism boffins in Northern Ireland. It would take a book to delve into this properly but soon I will endeavour to uncover the minutiae of that very odd relationship. Needless to say it's to do with money and not wanting to spend it.

The remarks of AutismNI/AutismUlster CEO Arlene Cassidy were interesting, following the breaking of this story. Maggie Taggart's piece on BBC1 found Ms Cassidy to be quite sanguine about the whole matter and altogether non-plussed. (see for yourself here: (http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/8056444.stm) In this clip Ms Cassidy says, "maybe this provides us all with an opportunity...I am a great believer in looking for the silver lining and maybe some of the funding diverted to Middletown can be used otherwise."

I do wonder if, by using the word "otherwise", AutismNI/AutismUlster hopes money ring fenced for the autism centre, might now come to the charity? As far as I know, AutismNI/AutismUlster was not invited to roll-out training at the Middletown Centre. Perhaps they see this funding setback as opportunity for the organisation, a chance to usurp the Department of Education/Health's role in autism leadership? There is talk of possibly developing the post of an Autism Commissioner. Would the incumbent to this post be culled from the voluntary or statutory sector? There is a lot at stake right now in terms of autism in Northern Ireland and whoever fills this post will inherit substantial influence. Is autism now more than just about 'the money' or is it about the 'power'? Is it about making sure parents never get ahead of themselves and ensuring that spending is corralled? The public (at least those who paid attention to the news for the brief 20 seconds of coverage on this story) might be feeling resentful that seven million was wasted on children with autism. How will future spending on our children be greeted? Will the public blame our children for this spend in the same manner that those who developed this centre blame our children for their 'failure' to comply?

I did expect AutismNI/Autism Ulster to be more vocifereous in its remarks regarding the funding cut to the Middletown Centre. Monies to fund the centre came from the Northern Ireland special needs budget, your child and mine are going to suffer because of this. The 'oh well' attitude was surprising considering I know parents who were indeed jumping up and down with anger and frustration over the lack of transparency in this matter - you did not hear their voices. Well actually, if you were listening to Radio Ulster at about 7.15am on Tuesday 19 May 2009, you would have heard a sound clip from one parent who said she did not want, and never did want this centre. Unfortunately, this coverage was cut from the program, and no mention was made of it again.


AutismNI/AutismUlster were very much in support of the endeavour from 2002 onwards.

On Friday 28 September 2007, AutismNI/Autism Ulster made the following comments: ... ‘It is a milestone in the campaign for government recognition of the specialist needs of children challenged with the social, communication and behavioural difficulties associated with Autism. The development of the Centre of Excellence provides a tremendous opportunity to make a wide range of interventions known to be effective in ameliorating the long-term effects of Autism, more accessible to the wider community. PAPA, the Autism Charity for the North of Ireland and Donegal, believes that the Centre of Excellence will act as a catalyst for the enhancement of awareness, expertise and research activity regarding Autism throughout the island of Ireland. We look forward to playing our part and working with the Education departments, North and South, to ensure that the Centre of Excellence for Autism is second to none’". ( www.niassembly.gov.uk/qanda/2007mandate/writtenans/070928.htm )

Where did all that previous enthusiasm go?


The NAS (National Autistic Society) were also sedate in their remarks, stating only that children were 'slipping' through the net'. Considering only 70 of Northern Ireland's children were ever going to get through this centre per year, and even if it was the best centre on earth, plenty of children would still 'slip' through that 'net'.

I now know of 80 or more children just in my own personal family/social circle who have an autistic spectrum condition, many of whom need help with very acute difficulties. Multiply that with the rest of you out there, and the statistics will show most of Northern Ireland's children would never get a look-in into this centre. Equity issues, child protection issues, even the very name of the centre were never resolved. Apart from the money wasted, I personally am sighing with huge relief.

It was madness from start to finish. That's why it was kept so secret, they knew it was madness. Seems anything goes where autism is concerned. A vacuum exists in Northern Ireland regarding autism and nature so loves a vacuum.

So to make up for the empty space of no services, no equality, no understanding, 'they' thought they would overcome all of that with a hatchet job of a 'centre of excellence'. I believe there are now, more than a few beaurocrats hoping this elephant will be allowed to retire. Very little thought was put into the idea, and whoever did think it up, had aspirations well beyond their means. We are a poor cousin in terms of autism compared to anywhere else in the 'developed' world, someone clearly got ahead of themselves here, someone who wanted to run when they are only learning to walk.

I ask you though, what would have been worse - an expenditure of 7 million pounds, or the trauma of hundreds of vulnerable children forced to leave their homes for up to five weeks to enter an autism 'rehab' centre, miles from home, without their parents and family support. Just imagine these unfortunate children subjected to run a gauntlet of behaviourists and mentalists all with the same belief system about autism (this kid isn't fitting in = 'bad').


What we really need is a centre for those who work with autism and our children to allow them to undergo de-programming of their negative belief systems and to provide them with an opportunity to confront the damage they have waged on our children as a result of their own ignorance and arrogance. For the teachers who view your child's stimming behaviours as something 'weird', 'bad', or unacceptable, they would need two weeks in group therapy to help them overcome their beliefs about conformity. They could then promote their new understanding to all the students they work with. This would foster acceptance and help to shuffle off stigma. For the educational psychologists who continue to speak in jargon and view parents as a hindrance rather than the central link to the child, they would require three intense weeks of having their own IQ assessed, as well as their social skills scrutinised, particularly their skills that involve working with parents.


All the children (guinea pigs) that would have been fed through this centre, had a very lucky escape.

The powers that be in Northern Ireland, both on a statutory and voluntary level, created the problems our children now face. They then offered a quick fix solution to their own lack of action by coming up with the idea of a centre of excellence. They hoped that vulnerable and desperate parents would bide their time for seven years, and understand that the wait for 'excellence' was worth it.

Will lessons be learned from the mistakes made? How much provision and forward planning was put on hold while the Province waited for this miraculous centre to materialise?

I leave it to you to ask more questions.


"You cannot solve problems with the same level of consciousness that created them." Albert Einstein