Middletown Centre for Autism Quarterly Research Bulletin

I have had sight of the much awaited first issue of the Middletown Centre for Autism's Quarterly Research Bulletin (May 2009). Thanks to teacher friends of mine, a photocopy of the original photocopy was forwarded to me. No glossy paper here, just a colour photocopy.

It also seems the Middletown Centre for Autism staff are not computer literate otherwise the bulletin would have been linked on their one-page website. Considering they have wasted seven million pounds, it might be prudent to find ways to save money on postage costs.

I wish my friends hadn't bothered showing me this piece of trash. There are so many other pressing issues to cover than this, but after reading the A5 (4page) piece of disappointing irrelevance, I had to comment.

The 'bulletin' is prefaced with a letter from the CEO of Middletown, Mr Gary Cooper, thanking those who contributed to the content (the monkeys at Belfast Zoo were chuffed).

The remaining 3 pages of the photocopied 'bulletin' contain 5 abstracts. Four of these are from the same journal and same volume of that journal (Journal of Autism and Developmental Disorders, Volume 39. )

The link to the said journal is not provided in the Middletown publication so I will provide it to you here - see: www.springerlink.com/content/0162-3257. I don't know how much the Head of Research earns per year, but the more recent job description for a Research Officer paid up to 28,000 pounds. see: www.nijobs.com/clients/middletown/FinaladvertisementAgreed27thFebruary2009.pdf for a description of some of the jobs that were on offer at the Centre. For the researcher position, the job description clearly states the incumbent would have to have experience of producing high quality research. This didnt happen here.

Pulling four fifths of content from one journal does not a research bulletin make. This is called scanning a journal and copying and pasting abstracts onto a piece of paper.

In his covering letter Mr Cooper states six referenced pieces of research are included in the bulletin, yet only five abstracts are actually shown. No proof readers at Middletown? These are the people who want to 'help' our children? Is this bulletin an indication of the level of 'professionalism' at Middletown Centre for Autism? The stakeholders at the Centre were touting it as a potential research centre. As this bulletin is an expression of the Centre, a calling card if you will, my doubts about any real research coming out of the centre have been totally and officially confirmed. Whoever produced this trivial piece of fluff should be fired.

The selection of research used in the bulletin, according to Mr Cooper, "reflects interests and issues that have been identified to the "Centre's Research Department through the Public Consultation carried out last year and also the Centre's ongoing training work."

The titles of the abstracts included are:

1. Restricted and Repetitive Behaviours, Sensory Processing and Cognitive Style in Children with Autism Spectrsum Disorders;
2. Sensori-motor and Daily Living Skills of Pre-School Children with ASDs;
3. Qualities of Symbolic Play Among Children with Autism (not included in the bulletin)
4. Decoding Representations: How Children with Autism Understand Drawings;
5. Transition from School to Adulthod for Youth with ASD's;
6. Comparisons of Eating Attitudes between Adolescent Girls with and without Aspergers Syndrome.

I find it very hard to believe that those parents who were consulted by the Centre (were there any parents who were consulted?) expressed that the issue of eating in adolescent girls was a huge problem, over and above all the other problems we as parents face. Also none of the research abstracts addressed adults with ASD's. We cannot forget that our children's childhood is very short-lived, that they are all rushing towards adulthood.

As a parent who makes it her business to scan, read and discuss research on a daily basis, this bulletin is not only a joke, it's a disgrace. I presume it is Mr Gary Cooper's responsibility to vet any bumpf emanating from the Centre. Clearly he did not read this piece of junk. What is even scarier, is that I believe he did read it. His name is on the front page together with his own welcoming letter and signature.

He states at the bottom of his letter that he looks forward to receiving your comments and suggestions.

As a parent, here are my comments and suggestions: -

First get yourself a researcher, someone who knows how to find research and knows how to determine the relevance of that research to the issues surrounding autism both here and elsewhere. Find yourself a researcher who can read more than one journal at a time. In fact, please give me the name of your researcher so I can advise her/him/them myself how to engage in researching, where to look for it, and how to disseminate it.

Second, with the over seven million pounds already spent on the Middletown Autism Centre, this bulletin, needed to be twice as long, printed on glossy paper and should have contained research that is relevant to those who might read it. Where are the connections/relevance between the presented abstracts and what parents need/want? The abstracts cited just sit there on the page. I am laughing as I write this, it is just too weird! Who could possibly glean anything useful from these four pages of regurgitation?

Third, hire a proof reader. Six research abstracts are cited, only five are printed.

Fourth, this 'bulletin' is not a research bulletin. Someone from your centre bought one journal and pulled four articles out of it, and printed them. Fair play to them, because they at least did look at one other journal to pull the other abstract from. But its not a research bulletin. A better name for it would be 'I had some time on my lunch hour journal' or, 'my job description says I have to do a mail-out' but this is NOT research.

In Gary Cooper's 'welcome letter' he states that the Middletown Centre for Autism has a number of online journals. He suggests that groups and individuals are welcome to come to the Centre and access the journals with prior notice. How kind of you, considering our taxes paid for these journals. I will arrange respite and hop in my car and spend 20 quid on petrol just to come and access your wonderful journals. I am sure the Centre will be inundated with other like-minded parents and teachers who have nothing better to do.

Why aren't these journals made accessible online for free via the one page Middletown Centre for Autism website?

Mr Cooper states the centre's library is currently under construction. I presume that this is a euphemism for 'we don't know if the shit has really hit the fan yet and we are hedging our bets until it is absolutely official, or until Catriona finally throws in the towel).

Considering funding was halted mid May, no mention was made in the newsletter of this fact, in fact no update on the centre is provided. It must have taken all of five minutes to put the newsletter together and it was sent out, I believe, well after the funding was dumped.

All in all, my son who has autism has created better documents than this one, without trying and without having been paid a hefty wage to do so.

I would be eager to hear from Mr Cooper what the public response has been to it.

Please make sure you get your own copy and provide your comments by contacting Middletown Centre for Autism by contacting them at: 02837 51 5750. Or email them at: admin@middletownautism.com.

The mind boggles. Seven million pounds has been wasted on this non-existent centre and hardly a whimper from the public or government.

Something stinks to high heaven here.

I wonder if Catriona Ruane has seen the research bulletin and if so if she is still lauding it as something special as she did in Stormont recently. Yet, what does Catriona Ruane know about research or autism?

Until parents speak out about the travesty that is Middletown, until parents wake up to the fact they and their children have been hoodwinked, money will continue to be wasted. Our children will continue to be forgotten and ignored.

One thing is for sure, very little money was spent on the first edition of the Middletown Centre for Autism's Quarterly Research Bulletin.

I have forwarded a copy to others, both here and throughout the UK. A resounding ' appalling' is their response. I think they feel sorry for me that I live here. But moreso, are stymied as to how 'they' got away with it.

That is a very good question.