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? (http://www.nwipp-newspapers.com/FH/free/364604903183554.php) 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 (http://www.theyworkforyou.com/ni/?id=2009-03-31.4.1&s=autism#g4.52 ) 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: ( http://www.niassembly.gov.uk/members/expenses/register2.htm )

"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.