Friday, 27 March 2009

Middletown Centre for Autism - 6 Year Wait and Counting

Middletown Centre for Autism Excellence - sounds good doesn't it? Despite the fact it was announced in April 2002 and millions upon millions of pounds culled from the special needs budget have been thrown at it, not one child has benefited. At this very moment more staff are being recruited on top of the 12 directors and numerous existing staff, all who have been collecting paycheques for up to two years already. Northern Ireland is currently suffering a billion pound deficit and special needs budgets have been cut for classroom assistants and statements. Children with an entire range of needs are being affected, yet Middletown Centre for Autism continues to attract money with little effort.

Obtaining a Statement of Special Educational Needs, a legal document outlining educational need and provision for that need, is becoming more and more difficult to obtain in Northern Ireland. Children who deserve a Statement are being relegated to special schools or placed in mainstream schools without any support or right to support. Most children in Northern Ireland who have special needs walk into schools with no rights, but this Centre will offer a chosen few specialised help costing 25,000 GBP each. That would pay for 2 classroom assistants for each child for a year.

The Middletown Centre for Autism, located in Armagh, Northern Ireland, is a political move on behalf of the North/South governments to split costs and appear to look like they are committed to doing something about autism to make up for the fact that they have done very little so far.

Parents of children who have autism are currently drowning in a sea of red tape and never ending obstacles to find help for their children. For some of these children, only 70 of them, they will one day, be able to walk through the doors of a state of the art autism centre and receive help costing thousands upon thousands of pounds.

What about a Centre for Spina Bifida Excellence, or Down Syndrome Excellence? The parents of children whose difficulties do not arise from autism must be getting very angry that the Special Needs budget is being funneled into a Centre just for autism, a non-existent Centre. They must be very angry that money which could have purchased their children special equipment and services is disappearing into the bank accounts of persons who have yet to treat one child.

3.5 million pounds per year has been spent on the centre, and probably a lot more. No one knows, no information has been forthcoming though some political representatives do want answers. see:(

Imagine the amount of classroom assistants 3.5 million could buy. With the lousy wages assistants are currently paid, hundreds could be recruited. Imagine the intensive training programs that could be provided to parents to help them work with their child's sensory systems or teach them how to facilitate language and communication.

Two years ago, the public was consulted (and I use that term loosely) about this centre. I attended two of these consultations in the North. Headed by Mr Gary Cooper, CEO of Middletown. These were an exercise in public schmoozing. Attendees received some nice hand-outs, a steaming cup of tea, a very affable greeting and a firm handshake from the CEO. However, they left as ignorant of the facts as when they arrived.

Most parents in the North were not even made aware of the consultation. To my knowledge, it was not advertised in the mainstream media. I personally heard about it via word of mouth.

I still have my Middletown hand-out from those meetings. It said very little. Those persons chairing the meetings appeared to have had pathological avoidance disorder as no questions were answered. When questions were asked, an instruction was given to "write them down on your form so we can submit it to the consultative process.” The attendees thought they were attending a consultative process.

What is this centre? What does it claim it will do? After one weeds through the saccharin laced adjectives that have been used to describe the centre, it appears to be a hothousing project or “boot-camp” for children with “challenging” behaviours, children whose needs cannot be met by their teachers.

No one really knows, what the centre is going to do because the goal posts have changed repeatedly during the past six years. Even the autism charity AutismNI doesnt know its own mind regarding the Centre. At the start AutismNI was very vocal about its support for Middletown, then its support waned, now it is difficult to know what they think, they are quiet.

Most of all, parents have not been advised of how this centre will work, what treatment their children will receive, or even what the sleeping arrangements will be. The Centre is nowhere without children and the parents of those very important children have not been consulted.

140 children, 70 each from North and South will attend per year. It is not clear how selection of such children will be made, but it appears they will be selected from mainstream schools. If that is the case, the centre will not be seeing many children with autism. They will see children who have Aspergers Syndrome, or PDD-NOS though. Children with autism are usually fast-tracked into special schools in Northern Ireland, segregated away from the “normal” kids. In effect the Centre may never see a child with autism.

How children will be referred to the Centre is also unknown. Only 70 children per year will be admitted from the North and it will be very interesting to see if parents who know how to work the system will have an advantage over parents who do not.

For those lucky (or unlucky) 140 children who will use the Centre, a siege will be laid upon them to make them more manageable for their teachers. Educational psychologists, speech therapists, behavioural interventionists and more will work with the child hopefully sending him/her back to school/home with a healthy respect for compliance. Home educating parents should note that their children will not be considered for treatment. This is purely for the benefit of teachers who can't cope.

The idea of sending children, particularly young children away from their parents for up to five weeks is quite unbelievable and a potential nightmare for the child..

The Commissioner for Children has been very quiet regarding this Centre despite the equity issues. Child protection issues abound as well. Parents have not been advised what this Centre will look like but surely the Commissioner knows. If she doesnt the Inter-Board Autistic Spectrum Disorder Group should be able to tell her. (Has this group consulted with parents I wonder?)

Reference to this group can be found here: ( Carmel Hanna MLA questioned the Education Minister on 24 November 2008 regarding how her department and others co-operate regarding pupils with autism:-

"The inter-board autistic spectrum disorder group, which was established in 2002 to advise the regional strategy group on special education needs and the Department of Education on issues relating to ASD, liaises regularly with representatives from the trusts. At those meetings, discussions are held on a range of topics relating to autism: the diagnostic assessment of children and young people; parent training; support for community services; joint training arrangements; and joint strategic planning.

The inter-board autism spectrum disorder group has developed an ASD strategy. We have also produced classroom resources to support positive interventions for children with ASD, and we are doing that on a North/South basis. There is, therefore, good sharing of practice and resources. The Department of Education, in partnership with the Department of Education and Science in Dublin, also advanced the arrangements that were necessary to enable the Middletown Centre for Autism to begin offering services in December 2007. That marked an important development in the delivery of educational assessment for children with significant levels of autism."

Selection of children to attend such a centre cannot be equitable, and cannot be ethical. The Centre touts itself as a Centre of Excellence. With the thousands of young people in Northern Ireland today who have autistic spectrum disorders, how is it equitable to provide “excellence” to some, and not to others? If the Centre is a Centre of Excellence what are the rest of the North's children getting - mediocre? It is completely unethical to provide gold standard service to some and not to others. It is unethical to spend a considerable amount of the province’s special needs budget on 70 children and not on the rest.

In terms of financial equity, the Southern government is getting a raw deal. The population is considerably greater in the South yet admissions from the South will be the same as from the North – 70 per year. The costs of the Centre are going to be split 50/50 North and South. This does not make sense.

Plenty of government representatives have raised serious questions about this centre. Last Monday on 23 March, a question was posed in Stormont, as to how much the centre has cost so far. I very much look forward to the answer that will be provided to that question.

The answers will undoubtedly lead to even more questions.

Friday, 20 March 2009

Autism Wars in Nothern Ireland

In Northern Ireland autism is a war. It's a war of attrition, the unrelenting wearing away by the powers that be, of your trust, confidence, and energy. Sometimes even hope, the eternal reserve of the forsaken, is lost too. This war is not about those who have the condition. Like all wars, its about money. It might look like its about making things better, but really its just about the money.

Not everyone in Northern Ireland knows this but there are still children and adults with autism, living in Muckamore Mental Hospital, some of whom have been there a very long time and who are now institutionalised. Who knows if their lives could have been different if it wasn't for this war. Is it inevitable that they had to end up there? Was this their destiny from birth? Mental health problems associated with having autism are common and totally misunderstood and tragically mishandled. In the link below is a culmination of the thoughts of some of the parents of these individuals. In reading it, the fear they have of their loved ones being as they put it "re-settled" is palpable. Imagine having to fight to KEEP your child institutionalised.

I am not making a value judgement here, their situation is what it is and they no doubt made the best decisions they could as parents and with what they were offered in terms of help. But as I look on the face of my young child I cannot accept or comprehend such a fate. Who knows what his future holds, but I would not want this for him and I am quite sure, nor would he. see:

I believe (from my own personal experience) that there are many individuals in Northern Ireland today, some who even work with our children, who believe that institutionalisation is the "best" place for "them".  When my son was the tender of age of 3 years old, a clinician working with him suggested that due to his hyperactivity and "un-manageability" that I should start thinking of residential school. Also suggested was the usual cocktail of drugs to "calm" him. (translate immobilise)

Drugs and institutionalisation - what a future, what a war is being laid against our precious children. Not to mention the many parents in Northern Ireland who have had social service involvement for not complying with these kinds of suggestions from "professionals" . (Drug them or we take them away)

Civilians, parents like me, unwillingly become conscripted combatants in these autism wars. We are forced to sign up for a tour of duty in a "do or die" fight for services, and for recognition and respect for our children. We pit our best attacks against the "enemy" but it's like we are on foreign soil. Our artillery gets lost on the roads and our troops are picked off by snipers who have bigger and better guns with high powered laser scopes. "War" as an metaphor in the context of autism may be unpalatable to some, but looking at some of the faces of parents who battle each day on behalf of their children, it sure seems like a war.

How could I have been so naive to have once believed my son would receive the help he needs? Or that anyone would care enough to help me find it? How could I have thought that the help he needed even existed in Northern Ireland. So far, I have paid for most of it, out of my own pocket. That is my duty, I am his parent.
Spending money to help our children is what parents do.

What irks me is that Northern Ireland has the audacity and arrogance to suggest they are going to deliver excellence regarding autism (ref: Middletown Centre for Autism Excellence) and are spending millions to try and prove it. Bear in mind  the "Excellence"  was removed from Middleown's name recently. How can Northern Ireland deliver excellence when "pathetic" is too good an adjective for their current provision?

Belief systems, money and the arrogance that only comes with ignorance is what this war is about, and not much else. Northern Ireland does not believe in or value children with autism. It knows that autism is not going away and the system is in almost complete meltdown.God help the kids.

There are also serious issues facing adults who have an ASD in Northern Ireland as well as their families/carers. Adults with autism have been forgotten. Most adults who have autism have very little hope of obtaining work or of living independently. Many adults have unaddressed conditions that are in addition to their autism, conditions that have wreaked havoc in their lives. Mental health difficulties arise very often due to decades of not addressing their needs in the first place. 

There are over 350 interventions that are currently being used to "address" autism worldwide, probably more. Whether you want these interventions or not, Northern Ireland generally only uses one of them. It's called the TEACCH program (Training and Education of Autistic and related Communication Handicapped Children ) "Oh, pardon me, did you just say handicapped?" Yes, I did. The UK version is called "Autism Independent" (a misnomer) and used to be called the Society for the Autistically Handicapped. "Excuse me again, but did you say "handicapped"? Yes, I did. I presume that the Society for the Autistically Handicapped must have undergone some very r adical changes to have it's name changed to Autism Independent! ( - but it didn't. It still peddles the same old crap called TEACCH. Health trusts pay for expensive TEACCH training ever year. When all you have is a hammer, everything becomes a nail.

Was a deal done between North Carolina (birthplace of TEACCH) and here? I won't go into TEACCH much here, because I have plans to tell you all about it at a later date but TEACCH is based on a premise that autism is a "culture" and that persons with an ASD thrive on routine. The most damning part about TEACCH is their belief system about our kids. It uses a lot of pictures and schedules but the two most important things a person with autism might want to learn is not part of the program - social communication and flexibility. Deliberately embedding routine in persons with autism (or anyone else for that matter)  is like giving cocaine to an addict - it's the last thing you want to do and in my opinion, it's criminal.

For many of your children  a place at a special school (dumping ground) is waiting for him, his chair is nice and warm and the staff have all the training they need in 'handling' (physically restraining) your child. "Oh, did you say you wanted your child educated? Ha ha, silly parent.

Remember, when your child turns 18, s/he returns back to you to probably live with you for the rest of his/her life. If you are a parent, think very carefully how special schools peddling the TEACCH method are preparing your child for life. If you have already 'bought' the candy coated stories from the head teachers of these schools about how wonderful their programs are, well it might be too late for you. But for parents with very young children, please think long and hard, and try to visualise your 6 foot 14 stone son who will be occupying the 'granny flat' and using his PECS book to communicate. Make sure that the environment in the flat suits his every sensory need. He will have had over a decade of being told the world can fit around him, thanks to the TEACCH program. Good luck with that. 

If you feel yourself getting angry about any of this,don't shoot the messenger.

This autism war has been very expensive and has achieved nothing for our children. The money has not been spent on rations or on artillery. Its been used to buy time, that non-renewable resource that continues to be stolen from our children and can never be bought back.

Sunday, 15 March 2009

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 ( 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: (

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 ( ).

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: (
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: 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.

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.