Thursday, 8 October 2009

Build a school, build your own dreams

In Northern Ireland, the hope of attaining a ‘good’ education in a ‘good’ school (whatever that is) can depend on a number of things. For any child, some of the obstacles to attaining a good education include whether or not your child sat the 11 Plus, what postal code you live in, whether a child’s parents value education and are proactive about it and of course the academic ability and/or motivation of the child.

In terms of the 11 Plus exams, many parents are well aware that for their children who did not sit the exam that their child sat ‘in the back’ so to speak while the 11 Plus pupils got all the attention.

Separate curriculums, even separate classes are formed between the ‘smart ones’ and the others. Don’t believe me? Ask your son or daughter who did not sit the exam, what their schoolwork consisted of, just prior to and following exam time. Were they colouring in a lot of maps and being kept busy with ‘artwork’ while their peers were busy cramming in concepts, facts and figures with the full attention of all the teachers?

We all know there is a two track system in Northern Ireland best exemplified by the grammar schools. Regardless of the 11 Plus being phased out, it has already done its damage.

For our children on the spectrum the obstacles set against them include all the above and so much more. Large class size, over stimulating environments, curriculums that have not been modified, teachers and classroom assistants who have not been highly trained, teachers who can’t cope, the list goes on and on. Put our children in a class of 28 and most of the child's day could well be spent having teacher and aide calming down his overworked nervous system.

Northern Ireland has a number of empty schools, schools that could be used to provide kids with autism a more specialised education.

If parents want schools for their children, schools that will specialise and will honour the opportunity to help our children, then parents must start demanding them. Why should we as parents accept what is on offer? The product is well past it’s sell by date and is actually starting to mould.

Have parents in Northern Ireland succumbed to the system just like the government and school boards hoped they would? Since when do we have to accept anything? Instead of governments telling us what to do, it is they who should and must listen to us, not the other way round. I see and hear parents complaining all the time, each carrying out their own personal battle with the authorities and schools, each in isolation, each signifying nothing in the bigger picture except isolated bouts of disruption. Even if a parent launches an appeal and tribunal regarding the education of their child, unless it's going to create a precedent in law the impact of such is not felt in the wider community.

All of these isolated voices of parents which are battling the system get lost and rarely come together. Despite the fact that there are more than 10 charities which offer services and/or advice regarding autism in the North, the voices of parents continue to make very little impact. Parents are separated, corralled and effectively silenced by the fact they are not coming together as one.

Every parent, without a doubt has some amazing stories to tell about their child. Are teachers and the Department of Education afraid of what our children might achieve? It would set a very dangerous precedent if our children started 'achieving' beyond the expectations of others. There would be no going back to suppressing and repressing our children and their parents if that Pandora's Box were to open. The Department of Education, I think, is terrified of providing opportunities for our children to grow because the flood gates would open to possibilities and all of that costs dearly. Best to keep parents and their children in a holding pattern. It starts with the negative attitudes of the diagnosing paediatrician and it ends with your child still at home at the age of 25.

I ask all of you who are parents to take one hour and really think about what kind of educational environment you really want for your child. Try to exclude the niggling comments from your child's teacher that he is 'happy' (he might not be happy at the age of 18 when he hasn't got the skills to get a job or a girlfriend) Talk to your fellow parents and compare notes about what you really want for your child. Then ask yourself 'are these things achievable?'

We can change the future for our children. 'Tick tock, tick tock....what are we waiting for? Are you afraid someone might say no?

Friday, 2 October 2009

SHAM - Autism Bill - Everybody Now Knows!

2 October 2009

Top doctor's autism bill concerns

NI's chief medical officer has said he has "significant concerns" about proposed autism legislation.

Dr Michael McBride said it could lead to discrimination against those with similar disabilities who have not been diagnosed on the autistic spectrum.
He warned the assembly's health committee that parents could seek an autism diagnosis to access facilities.

Arlene Cassidy of the charity Autism NI said she was "astounded" by Dr McBride's comments.
"I find the chief medical officer ill informed about the purpose of the Autism Bill," she told BBC Radio Ulster.

"This is a good thing, it is about building upon the good work of the departments of health and education - this bill is about joining up government."

Dr McBride said he had a number of major concerns about the Autism Bill (NI).
“ Legislation would encourage more strategic planning regionally across all departments ” Arlene Cassidy Autism NI

He said he was worried about the "substantive administrative costs that would be incurred and the lack of clarity over how the legislation could be put into operation, given our current equality legislation".

"I believe this legislation could discriminate against individuals who could have a similar range of disabilities such as speech, language and communication problems but are not on the autism spectrum," he added.

His comments were backed by director of mental health Dr Maura Briscoe, who warned the committee the bill could create a hierarchy of disability and create labelling "not to the benefit of the people of Northern Ireland".

An action plan to improve services was introduced earlier this year, but Ms Cassidy said legislation was necessary to ensure a multi-agency approach.
"The autism action plan is a positive step forward but it is for the Department of Health - autism is a holistic problem, it is a lifelong problem and involves other government departments," she said.

"People involved in the action plan have found they haven't got co-operation from other departments, so legislation would encourage more strategic planning regionally across all departments."

One of the bill's supporters, SDLP assembly member Dominic Bradley, told the BBC he remained confident the bill would eventually be passed despite the objections of Dr McBride and Health Minister Michael McGimpsey.

"I don't think it's the end of the road - we have the support of the majority of political parties and indeed we did have the support of the Ulster Unionist Party until recently," he said.
Mr Bradley said cross-departmental planning would save money by removing "duplication of effort".

Ulster Unionist peer Lord Maginness, who was involved in drawing up the autism action plan, said introducing legislation would be costly and time-wasting.

"Based on the needs of parents, carers and users rather than the demands of a voluntary group or politicians, we've got a lead autism director in each trust, a project team and will soon be able to assess every two-year-old child in Northern Ireland," he said.

listen live on BBC IPlayer here: (fast forward to 1 hr and 42 minutes for this particular 9 minute clip)

Story from BBC NEWS: 2009/10/02 08:50:48 GMT© BBC MMIX

**Let's remember Arlene Cassidy's references to 'looking on the bright side', following the Middletown Centre for Autism fallout in May this year.

In this clip from 18 May 2009,( Ms Cassidy was asked her opinion over the Middletown debacle. She responded, "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."

Yes Ms Cassidy, I agree with you on that one. With regard to the Autism Bill and the exorbitant amount of money it would waste, your previous comments regarding 'diversion' of monies are applicable here too. Let's 'divert' money for this ridiculous bill, to those who need it most, namely our children. Seriously, what has changed for our children in the past 20 years, actually the same 20 years that AutismNI/AutismUlster has been in existence? How many ASD specific schools with trained teachers would the Autism Bill buy? How many youth/adult employment transition schemes would it fund? The comparison of Northern Ireland to the Republic or to England is dire in terms of what is available for our children. We need real early intervention, not half hazard 'attempts'. We need a complete overhaul of the belief systems of those who work with our kids in this province. Our children need so much - legislation guarantees nothing - in fact it might even make things worse by creating a restrictive perimeter around what can/cannot be done.

Autism in Northern Ireland seems to be more about wasting money than anything else. 7 million pounds has already disappeared down the Middletown rabbit hole, much of it having gone into the pockets of Directors.

The fact our 'legislators' allowed 7 million pounds to be wasted, that it was done 'legally' is not very encouraging. What we could have done with that money!!

Let's not make the same mistake again. The Autism Bill is a fruitless, redundant and ultimately damaging idea and I am so thankful that some people in Northern Ireland are seeing sense and that others are finally having their voice heard over the din of others' egos and career ambitions.

IRIS ROBINSON tells us like it is?

Hello dear readers. We are at a major crossroads regarding the future of our children and all individuals who have an autistic spectrum condition who live in Northern Ireland.

Yesterday (1 October 2009) in Stormont, a meeting took place of the Health, Social Services & Public Safety Committee. At 2.00pm a Departmental Briefing on Proposals for the Autism Legislation began. If any of you were party to the proceedings you would be reeling with shock. Why? Kieran McShane, parent and ASD Strategy member suffered a verbal outburst from Iris Robinson, MP, DUP in a discussion about the taking forward of the proposed Autism Bill.

Kieran McShane: "I am a parent and carer and a member of the Autism Strategy. Nothing in this bill is for me. "

Iris Robinson: "You may be a parent but I am an elected representative!"

For those of you out of the loop, there is much afoot regarding autism and politics at the moment and if you have not already done so, you will be very interested in seeing this: . Go to page 38 to see a diagram of how parents are going to be key to the future decision making regarding our children.

I personally, am appalled and highly insulted that Iris Robinson DUP appears to hold the view of her friend Ms Arlene Cassidy CEO AutismNI/AutismUlster higher than the views of parents, carers and service users.

I personally cannot equate Ms Robinson's comments yesterday to be based on anything else than what she is being fed by AutismNI/AutismUlster. Who wants this autism bill except AutismNI/Autism Ulster? We have laws here regarding all disabilities and it is my opinion that fear is rising in the hearts of certain organisations both statutory and voluntary that parents are going to be furnished with the power, authority and mandate to shape the future for their own children. Iris Robinson in my view, now has the responsibility to prove to her electorate who she is representing.

If you are a parent, a carer, or an individual with an ASD and you live in Iris' riding,she desperately needs to be re-educated by you.

Does Iris Robinson represent ALL of her constituents who have varying 'disabilities' or does she represent only those with ASD I wonder. Will she fight for legislation for those with cerebral palsy, down syndrome, the blind, and the physically disabled, under section 75? Is she as 'well-acquainted' with the leadership of these groups as she is with Arlene Cassidy? Iris seems to have a lot of time for 'autism' and AutismNI/AutismUlster. I suggest to other 'disability' groups to get cracking and bend her ear equally.

Nothing escapes the attention of parents where politics is concerned. It's not about politics - it's about our children and we are watching, watching very closely.

So many questions. Will the rest of Northern Ireland's carers (185,000) be meted the same treatment as Iris Robinson projected onto Mr McShane yesterday just because she is a political representative? I would not like to think so.

If you would like a dvd copy of the DHSSPS proceedings from yesterday for your own records, you can order your own copy for free by emailing: Sound& In the body of your email advise the proceedings, and the date they occurred. Don't take it from me, watch what is going on for your own eyes.

Saturday, 26 September 2009

Catriona's Carnival

As many of you are aware of by now, Katrina Rooney, Minister for Education has been sending her talking heads out into the province to summon up support for her 'Every School a Good School Inclusion consultation paper.

Interestingly enough, though not surprisingly, the majority of questions asked at the meeting I attended,were from teachers in special education and from parents. I don't believe mainstream teachers are aware of what is going to 'hit' them should this consultation become policy.

The meeting I attended was chaired by an ex special education teacher who had the charm of a pitbull. She spent the first hour 'explaining' the dire contents of the consultation paper, how it came to be, and then 'permitted' the audience to ask questions in the second hour.

Members of the audience who had questions were curtly advised that only one crack at the microphone would be permitted. The woman ensured that the queue of questions was maintained in scrupulous order. If she wasn't a teacher, she would definitely have a career as a sheep herder - all she needed was a whistle.

Alarm bells began to ring in my head. Controlling the room and maintaining order seemed to be paramount over and above answering or even responding to questions asked.

I only attended one of these 'roadshow' meetings. I estimate over 100 people were at this one. I do know, however, that other meetings were not as well attended so perhaps the poor woman was a bit intimidated.

Despite attempts via bad timing of the meeting, to make it as difficult as possible to attend, people continued to roll in after 4.00pm.

The chair of the meeting explained the timing of the meetings (4.00-6:00pm). She advised that it was in fact parents who displayed their preference for that time slot because a 7.00-9.00pm time slot would 'interefere with dinner and homework'.

I doubt very much the Department of Education listened to any parents regarding the timing of these meetings and for those I spoke to, the timing was universally inconvenient.

I could go on and on about the content of the meeting but you can read the document yourself. (see link to the right) One of the most salient points raised was by a teacher who asked, 'if I mis-diagnose a child, will I get sued?'. This teacher was referring to page 15 of the document which clearly states, "a move to formal assessment of a child's difficulties or disabilities will only be necessary when it has been clearly demonstrated that the IN-SCHOOL support programme has not been successful in meeting those needs."

Incredibly, the Chair's response, after consulting with her stage partner was 'no, teachers are not being asked to diagnose', but that there are 'protection' and safety nets for teachers who might be accused of misdiagnosing a child. (when you read the excerpt above you will see that teachers are going to be expected to be front line assessors of children in need and will be expected to 'flag' them up.) I foresee many children being incorrectly 'flagged' up and also ignored. What about the children who have an autistic spectrum condition, are from the Travelling Community, have recently suffered a bereavement and who are 'looked after' children? What additional need must be tackled first?

What I really wanted to say at that juncture is that as a parent of a child with autism, I can spot another child with autism at 90 paces. I see them on the street, in the park in the shopping centres - why is there such a problem with 'flagging' children. I think most parents who have kids on the spectrum are capable of this. Our experience provides us with a built in 'radar'.

In front of many parents in the audience, (potentially the parents who would indeed sue such a teacher for neglect or misrepresentation of their children) an explanation was given to this individual teacher by the Chair as to how he will be 'protected', how there are checks and balances in place to always protect the teacher.

Incredibly, parents said nothing whilst listening to this, but of course, most of them had by now used up their one chance at the microphone. (Teacher had laid down her rules and we all abided by them.) In retrospect, I wish I had told the Chair at the start that I would not abide by her 'rules' and that I would ask as many questions as I bloody well pleased.

The format of the meeting was almost exactly the same as the Middletown 'roadshow' (farce). Questions were asked at those meetings too and the Chair of those meetings Mr Gary Cooper continued to respond with, 'that's a great question, write it down so we can look at'. That was over 7 million pounds ago. I would love to know what this consultation paper has cost so far. Despite its cost, I can only hope, for the sake of all our children, that it also goes the way of 'middletown' and is forgotten about.

No notes were taken by the Chair or her co-hort, and I doubt very much that the proceedings were recorded. Important questions were posed by parents and teachers and others. Those questions and comments, largely ignored, and with no recording of them, will disappear unless the individuals who posed them make sure to write them down and submit them to the Department. I do wonder what the Chair of these meetings is telling her department about the content of the said meetings. Really, what is the point of having meetings unless the proceedings are recorded in some way. Will the Chair go back to her department and say all was well, or nothing to report? Such a joke.

The question arose during the meeting, 'who do parents sue, should their children suffer from neglect? - the Board or the School.

Shockingly, the Chair of the meeting advised us all that the consultation document is not finished, that there are many more parts to complete before it could be submitted to departmental level.(which begs the question why it is being presented for our response, if it's not even finished.) We were told very clearly that we are being expected to comment on something when that 'something' is not complete and when the most important part of it, has not even been presented yet.

The Department of Education considers you, parents and teachers, as fools.

Those who asked the questions about guarding children's rights were informed they would have to 'trust' the school board, that there was no 'foreseeable' relinquishing of rights of children should the document become policy.

So, to all parents, all you have to do is trust your education board.

I don't see much point in delving into this consultation document any further as it is a total joke.

The fact that no one, not one person clapped or publicly thanked the Chair for her 'speech' said a lot. A deadly silence ensued once she signed off of her microphone. She knew it too as she very uncomfortably walked back to her notes. What did she expect?

Standing outside and eariwigging on the conversations of both teachers and parents, I can tell you that no one I spoke to was impressed, and many were exceptionally angry and rather stunned at it all. Following meetings such as this, at least in my experience, it's always like this -parents gather and 'complain' and teachers do as well.

This time, I was very glad to participate in the ensuing 'bitch fest'. I could hear parents and teachers talking to each other with much concern about this fiasco and comparing notes. These people may never meet up again but it is my deepest hope that all who had concerns about what they heard that day, will take the time to fill in their response booklets which can be downloaded online from the Department. One does not even have to use the downloadable form. You can email, write a letter or memo to let them know what you think and why.

(interestingly, the organisers of this consultation did not think to bring copies of the 90 odd page document for the audience, nor did they furnish us with hard copies of the response booklet). To read the document online is very difficult and in fact many of those at the meeting had not even read the document at all.

Our children are in great peril should this document become a reality. In my view, legal action is required against the Department to ensure this document never sees the light of day again.

The Department of Education is 'at it' again and still believes that they can ride roughshod over the needs of our children and the desires of their parents. The Department I believe, has every intention of just doing what IT wants to do, with no desire to consult with parents, voluntary or other sectors.

If you allow them to do this, you only have yourselves to blame. Parents standing up to School Boards in Northern Ireland, is incredibly overdue. There is no excuse for ignorance on this issue and I apologise for sounding preachy but sometimes parents are their own worst enemies.

Parents have got to stand up to the Department on this one. The only thing I wanted to say at this particular meeting was 'shove it' right back where it came from, it was an affront to me, to even have to discuss such drivel.

Friday, 3 July 2009

Mother, can you spare a dime, or rather £450.00?

Autism Ulster/Autism NI together with an events company are organising an autism conference for July 2010 in Belfast (after a full month online, the link to the conference is inaccessible (under construction) - maybe AutismNI read this blog and are rearranging their fee schedule to make the conference accessible to parent/carers?)

UPDATE: 26 AUGUST 2009 - the site is back up and running and as expected, the fees have been reduced by at least half with a special rate for parents.

UPDATE: 2010 - The Conference is cancelled altogether - no surprises there then.

If you have £450.00 to spare, you can attend this two day event. If you book early or if you are selected to present a plenary session you will save £100.00. I do not understand why AutismNI/AutismUlster with their 24 staff had to hire an events company to organise this conference as surely that many staff should be able to prepare a conference with ease.

Extraordinary fund-raising efforts from parents like these (see: will help AutismNI/AutismUlster pay the bills from the events company and more.

Yes, I know, what you are all saying - it's appalling that AutismNI/Autism Ulster takes money from parents like this. Maybe the mum insisted or forced herself on AutismNI/Autism Ulster? Maybe they just 'couldn't' say no? If we had statutory bodies who did their job, parents wouldn't be used like this.

Last weekend, PEAT (Parent Education as Autism Therapists) presented a comprehensive two day ABA conference (applied behavioural analysis) and brought some of the biggest names in the world to Belfast at a vastly reduced fee compared to the proposed AutismNI/Autism Ulster 2010 conference. (£60.00 for parents) The PEAT conference was well attended by parents and provided real help to those who want to 'intervene' their children's autism with ABA. PEAT is not well funded, is relatively new to the scene compared to AutismNI/Autism Ulster but has managed to give parents tangible and sustained advice and assistance that no one else in Northern Ireland ever has. Whether or not you agree philosophically with ABA or not, at least PEAT is doing something different and provides an avenue to parents to meet their children's individual educational needs through precision teaching.

PEAT's name and website links have been added recently to the AutismNI/AutismUlster site (though you do have to scroll through their links page to find it). Unlike the other 3 autism charities in Northern Ireland (NAS, Aspergers Network and Eagle Project) PEAT must have found favour with Autism NI/Autism Ulster.

I would ask the mother referred to in the weblink above how she thinks raising £2500.00 and giving it to AutismNI/AutismUlster is going to benefit her son. I wonder if some of her fundraising might be used to permit admission for a few parents to the upcoming conference. £2500.00 will pay for five parents to attend.

'Company Store' springs to mind here. I also wonder what the membership of that charity think about the fact that most of them will not be able to attend the conference their membership fees and annual fund-raising efforts have paid for. Nice.

Maybe members of the charity know what happens should they speak out and question the status quo. 

If you thought you and your family were isolated with autism before, try getting on your soapbox at your local AutismNI meeting and watch for the crumpled faces of your fellow parents.  Northern Ireland is like a wee village, it won't be long before the gossip evolves and you attract 'troublemaker' as your first name.

Back to this young mum and her Great Wall of China idea - will the money she raises be used to provide her son with direct services or will it be scoffed to fly more MLA's off to Washington? I note in the linked article about her, that Michelle O'Neill (SF) has a few comments to make about how difficult it is here in Northern Ireland - as she was one of the selected MLA's to attend the December 2007 AutismNI/Autism Ulster junket to Washington, maybe she could tell us how the Washington junket benefited children and adults with autism.

Maybe she would like to give this young mum back, the money it cost to fly her, wine and dine her, in Washington? What about it Michelle? Put your money where your mouth is. I distinctly remember talking to Michelle O'Neill about autism years ago and in the middle of our conversation she related to me how 'she had children'. I never did figure out what relevance that had to the issues I was bringing to her. That was pre-Washington. I presume she is clued up now?

Back to the conference...on it's web site linked above, AutismNI/Autism Ulster make a number of references to how beneficial the 2010 conference would be to parents and carers. I suggest any parent interested in attending, to ask your mortgage company or the housing executive to stall your payments for one month so you can attend this conference. Failing that, you could of course save 9 weeks of your Carer's Allowance or a month of your child's DLA in order to attend or apply for a carer's grant - that is if you really want to - the line-up of speakers are rather ho-hum and it begins with Gary Mesibov.

AutismNI/AutismUlster, have been instrumental in continuing to promote the TEACCH Program (Treatment and Education of Autistic and related Communication-Handicapped Children) in Northern Ireland. To that end, this conference will feature Gary Mesibov of TEACCH et al. What we as parents have to learn from Gary Mesibov is beyond me.

The acroynym 'TEACCH' sounds like the word teach, but this program has very little to do with teaching/education/learning and nothing to do with autism.  The idea of paying £450.00 to listen to Mesibov drone on once again about the marvels of robotising our children is anaethema to me.  Surely some parents in Northern Ireland have read the comments from Patricia Howlin and others about the lack of efficacy of TEACCH.

TEACCH is of course, lucrative and for Autism NI/Autism Ulster, it has been a good earner via the charity's dedicated company 'ACT'. Teachers like it because it fulfills their generally self fulfilling prophesies about our children ('these' kids can't learn, but they love routine, why bother educating them; they haven't learned the way 'we' teach them, it's their fault, we tried, they are stupid, lets control the damage via TEACCH; let's book a refresher course costing thousands of pounds via AutismNI/Autism Ulster so no one can claim we aren't qualified in how to damage children - most of all never EVER let the parents think their child is capable of learning otherwise the flood gates will open!)

Compare this to some of the more informed and pro-active parents in Northern Ireland who hire autism consultants from abroad, recruit their own dedicated staff, train them, and run full time education programs for their children in their home every day generating copious data collection, weekly reviews, video footage analysis and some of whom attend 3rd level and post graduate studies in ABA/VB/Autism studies) . The 'why bother' mindset of the TEACCH promoters guarantees children will grow up to live dependent or in a care homes.

No one knows where a child will go unless all possibilities are pursued. In Northern Ireland, minds have been made up about our children and one thing is guaranteed, if you don't 'do the work' with your child, s/he will suffer for it just like any other child. Be a parent first, rely on no one.

You could of course attend the conference and ask Mr Mesibov and the organisers what exactly TEACCH has done for children here. No positive outcomes, however,  have ever been peer reviewed by the TEACCH organisation and their philosophy has not changed one iota in decades. (that autism is a 'culture', that individuals with autism 'like', 'thrive', 'need' routine, etc bloody etc.
The TEACCH program was developed to keep little 'handicapped' children quiet. Please note that the word handicapped still remains in the acronym of TEACCH. In fact the english equivalent of the TEACCH program was until very recently called the 'Society for the Autistically Handicapped'. What are the belief systems of those who subscribe to such language?

A simple google query of 'new autism research' will provide over 1.9 million links, none of which include using the TEACCH method.

TEACCH is about damage control, keeping our children functionally autistic, ensuring a new generation of care and group home employees.

I recently asked the principal of a large 'severe learning disability' (ugh) school to tell me what the outcomes are for kids who make it to mainstream from the school. This individual replied '1 in 20'. I was not surprised. This school uses TEACCH, as do all of the special schools here. The attitude of this individual towards me was patronising and clearly my question was an uncomfortable one. My question was eventually answered but only after much speculation to my motives for asking it. ('oh no, another parent in denial who thinks her kid can learn' and even worse, that thinks I should be able to teach him).

I hope that any parents who intend on attending this conference ensure they get a substantially reduced or free admission. There is no mention in the link to this conference about a reduction for parents, except that if you book early you will save a bit of money.

The conference is not for parents. AutismNI/Autism Ulster changed it's name from PAPA (parents and professionals autism) for a reason. If you want to keep parents out, you charge whacks of money to get in.

Those who will be attending this conference will be "professionals" looking for a couple of days away from their desks, and whose budgets can pay for it.

Researchers and bright minds in autism are not going to attend this conference, nor have they been invited. AutismNI/Autism Ulster clai this conference as 'one of the most important international conferences dealing with autism in 2010'. Perhaps this is so, but only in Ballybackward, not the world.

There will be hundreds of conferences regarding autism in 2010 all over the world, with attendees who are at the top of their research field. AutismNI/Autism Ulster is not in any way known for its research capability, their website is one example of that, and anyone who has something new to share in the field of autism will be hard pressed to take the time or make the effort to come to this conference. Why would they? Researchers needs peer review, their peers won't be here. AutismNI/Autism Ulster does not have the capability to scrutinise research, much less provide its dissemination.

'Smoke and mirrors' conference would be a better title. Here is a list of some other autism conferences taking place in the coming year, all at a substantially lower price and with better line-ups than the one described above. see: .

I would suggest to parents that we present our own conference, the line-up made up only of parent experts. If we charged £450.00 a head, we could raise enough money to initiate the construction of a new autism specific school or send us all to Washington on an autism fact finding junket, one that would actually amount to something more than than a photo shoot.

Tuesday, 12 May 2009

Autism Act Northern Ireland

To readers, this update is long and laden with many issues/concerns. I have been talking to a lot of parents recently, particularly parents of newly diagnosed children. With few exceptions, these parents are scared, isolated, confused and angry that following the diagnosis of their child, (a diagnosis some of them had to beg for), no help has been forthcoming. I brought up the issue of the proposed autism Act with a number of these parents and after discussing what the Act might or might not be doing for their children they were unanimous in their response. "Give us access to knowledge, give our children appropriate social and educational opportunities and stop isolating our chidlren."

One parent in particular asked me "what good is an autism Act when we are sitting here with a child who doesn't know his own parents? He needs help, we can't afford it and in Northern Ireland, even if we could afford it, very little is available."

he autism charity
AutismNI (Autism Ulster/PAPA/ACT) has lobbied for some time for legislation (they want it to be called the 'Autism Act') to underpin the "rights" of individuals with an ASD in Northern Ireland. When convenient, AutismNI/Autism Ulster rolls out their support of this non-existent Act to show how committed they are to the label of autism. Why wouldn't they be. Autism has kept some of them in jobs for almost two decades!

What is an autism act going to do for our children, for the adults and their families?
See the following link to find out how one young man has not been able to return to Northern Ireland for 10 years due to lack of services here. Where are his rights to live in his homeland with his own family? ( Will an autism act change this for him?

I have never contacted AutismNI/Autism Ulster, never met them or availed of their expensive training packages. This goes for many other parents I know. There must be some parents who attend their highly regulated support groups, (and of course who don't mind fund-raising off the backs of other financially stretched parents), but I doubt very much that parents who 'question' are welcomed, at least from the stories I have heard. All parents who have a child on the spectrum have questions, perhaps those questions are asked outside the confines of the AutismNI/Autism Ulster living rooms cum 'offices'?

From my site tracker on this blog,  Autism NI/Ulster have visited this blog no less than 218 times in the last month (11 times today, and it's not even 9.00am!) I hope staff members are not using 'company time' to do that when they could be using their time more efficiently answering questions from and providing advice to people seeking help.

By the same token, if you have questions about the efficacy or need for an autism act you could post them here to this blog because the staff at AutismNI/Autism Ulster are definitely reading it.

Legislation such as the proposed autism act guarantees more for service providers than it ever could for the individual. There is now a huge and growing service 'industry' surrounding autism and legislative proposals like these will go far to protect this industry and ensure our children will need that industry.

Autism becoming a make-work project, keep the kids coming, keep the payrolls coming. 

The  autism act is an attempt to streamline the autism industry, make it as cost effective as possible. Gathering statistics is an important part of this proposed legislation. Knowing how many persons have a diagnosis will give the government and service providers plenty of information on how to tailor services, how much to spend, how much NOT to spend and where to spend it.

Unfortunately, the Stormont Assembly have taken their cue and lead from Autism NI, not bothering or too lazy to seek out their own research into the matter.

Scores of speeches, see here ( ) that were inordinately painful to read, waxed lyrical about the 'need' for legislation and not one of these speeches addressed the question of what really IS autism, and who really HAS it or what an act will actually DO.  In typical Northern Ireland style, an argument ensued when someone dared to question the efficacy of not only the proposed legislation but the driving force behind it (AutismNI/Autism Ulster)

Unlike the lemmings in the legislature, persons with an autism label do not follow any one path, do not think the same, do not feel the same. Complications like visual agnosia, semantic pragmatic disorder, dyspraxia, hypotonia, auditory processing delay, sensory integration disorder, and many many other difficulties are experienced by persons with autism. So if your child has Down's Syndrome accompanied by autism, what will an Act do for your child if autism is a secondary diagnosis? Where will the money come from, the entire special needs budget? Will the child with Down's Syndrome be 'paying' for the child with autism? The mind boggles.


There is a plethora of rather horrible and dangerous legislation being passed lately worldwide. Just because a proposed piece of legislation might have the word 'autism' in it, does not mean it will be for the benefit of those who have the diagnosis.

In the Belfast Education Board's recent 'Senco News' magazine, (Edition 7, Spring 2009) it is stated that the Chief Inspector's Report found only 4 percent of pupils in Northern Ireland have a statement of Special Educational Needs (SEN). 17 percent of Northern Ireland pupils have been identified as having special educational needs (the real figure is much higher, and has been estimated at 25 percent or more).

Many of those pupils will have autism or autistic spectrum conditions. A statement of special educational needs is indeed a legal document. It has legislation to back it up. Yet, only 4 percent of those who need this document, actually have it.

Despite having this 'legal' document, many of those pupils will not be in receipt of their legal entitlement due to the document's failure to notate their needs and provision accurately. What a child needs and what a child gets in Northern Ireland depend on so many variables. If a parent does not strongly advocate for the child's right to entitlement, the statement could well become useless. Similarly, the post code lottery of entitlement in Northern Ireland is dictating whether children are receiving speech therapy, classroom assistants and occupational therapy. This has nothing to do with the law, it has to do with money. Clearly, the 'law is an ass in this regard.

What young people need today is legislation to back up the legislation.

You can see how legislation guarantees nothing, apart from money saving. Who more than AutismNI/Autism Ulster, has a vested interest in ensuring that services for individuals with autism are 'legislated', or that incidents of the diagnosis are counted and statistics recorded? Part of AutismNI/Autism Ulster/PAPA is their own profit making company 'Autism Community Training' otherwise known as 'ACT' (yes the acronym was deliberately chosen to reflect the charity's political ambitions). Are you getting the picture yet?

Jobs are at stake with AutismNI/Autism Ulster. God forbid that children don't need our services. God forbid, children with autism get appropriate education, social acceptance and understanding, or independence  dear me,  we can't have that. We must ensure that parents continue to be vulnerable, uninformed and that they rely on us, their children must always need services! - We have our contracts with the Health Trusts to protect!

There are so many parents who continue to buy the negativity, that is doled out to them by so-called 'professionals' regarding their children and their limited 'potential'. This Act fits in nicely with that mindset, and bolsters the clinicians who to this day tell parents that their children will 'never' walk, 'never' talk, will 'never' attend mainstream school, never have friends, etc. Imagine if such an Act was to read: 'to secure the right of every person with a disability to a full and productive life devoid of the negative and injurious belief systems of others and to make it a crime to project your negativity onto a young child or adult alike'.

Securing the rights of persons with all disability is what we need. Label driven legislation will never work, and is inherently discriminatory. Guess what? We already have it with the Disability Act.

Upon reading the speeches of 31 March at Stormont by MLA's regarding this proposed Act, my heart sank at how incredibly ill-informed, backward and dangerously parochial these people are. We voted these people in, we need to inform them. They are clearly taking their direction from AutismNI/Autism Ulster. Not one of them admitted to speak from personal experience of autism and it was, in my opinion a mutual appreciation exercise.

Why wouldn't they support AutismNI/Autism Ulster. With the offer to MLA's of free junkets to Washington (which they accepted and apart from only one of them, never publicly divulged their involvement) and substantial money paid to buy lobbying 'tables' well, you just can't beat the influence of a pound.

Buying legislation is popular in today's politics and those who praised AutismNI/Autism Ulster during this debate, were among those whose tickets to Washington were paid for by the charity (I use the term 'paid for' loosely - the monies were inevitably culled from AutismNI/Autism Ulster's membership fees/fundraising events). If they specifically raised money for the purpose, they did not publicly advise their membership.

Nothing in this world is for free and those members who accepted this freebie trip (and all the other goodies that AutismNI/Autism Ulster may have plied them with) are now expected to 'pay back' by supporting the idea of the autism Act. Classic!

George Savage MLA brought up this 'matter' on 31 March 2009 in Stormont. It's interesting and comical to read how his comments touched a nerve. Dominic Bradley 'protests too much' when he responds to Savage's comments at Stormont on 20 April 2009:
5:00 pm
Dominic Bradley (Social Democratic and Labour Party)

"...Deputy Speaker. During the debate on world autism awareness day, which was held on 31 March 2009, Mr Savage made a remark that could be construed as meaning that Members benefited financially from their work with the charity Autism Northern Ireland. Members of the all-party group on autism, and Autism Northern Ireland itself, expressed extreme concern to me as chairman of the all-party group about the import of those remarks. Therefore, I ask that the Speaker examine those remarks and rule whether there are grounds for asking the Member to withdraw them. "
Perhaps Mr Bradley who is very au fait with AutismNI/Autism Ulster would like to explain to the Assembly and to the rest of Northern Ireland what it all does mean - who paid for this excursion and why? Nothing has come of it from what I can gather. It just sort of hangs there in the ether with a big question mark over it.

Best to clear it up once and for all don't you think Dominic?
John McAllister dutifully registered his involvement but others did not. Why? Neither did Michelle O'Neill (SF) et al. The register was set up to, “provide information of any pecuniary interest or other material benefit which a Member receives which might reasonably be thought by others to influence his or her actions, speeches or votes in the Assembly, or actions taken in his or her capacity as a Member of the Northern Ireland Assembly”. Members are required to keep that overall purpose in mind when registering their interests." At least, Dominic let us know where the monies came from. Flying, dining and accommodating 12 people to Washington (not a cheap place) via a charity is some feat. Surely members of AutismNI/Autism Ulster deserve to know what money was spent and why. Northern Ireland - so funny, if you didn't cry first.

see link to Register of Members Interests here: ( )

"One of the penalties for refusing to participate in politics is that you end up being governed by your inferiors." - Plato

Socrates was also known for posting questions to which there were many many answers, none of them 'correct'. Northern Ireland needs some Socratic method - questions are not being posed, much less answered. This in itself poses another question - why?

What are you afraid of? Please speak up.

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.