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."
One parent in particular asked me "what good is an autism Act when we are sitting here with a child who doesn't know its own parents? He needs help, we can't afford it and in Northern Ireland, even if we could afford it, very little is available."
The 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. The idea has dragged on for years, and I personally think that all it is, is really just a stick that AutismNI/Autism Ulster grabs to beat it's own drum.
One cannot examine the proposed legislation without looking at the organisation that is spearheading it.
From reading AutismNI/Autism Ulster's proposals for legislation, together with the autism Bill presented at Westminster recently, (neither are going to pass) these proposals are not about rights. They are about underpinning their self fulfilling prophesies that our children will always need help, and will always be viewed within a medical model, will always need services, will always have a label and will always be dependent on the state or their carers. Just like the NAS battle cry 'autism is a lifelong and incurable condition',(and don't you EVER forget it), AutismNI/Autism Ulster seems more interested in existing as an entity than in helping people with autism.
Instead of droning on about non-existent legislation, what they should be doing is providing members and the public with comprehensive access to new research in the world of autism and helping to secure the means to enable our children NOT to have to rely on legislation of services.
England has a multitude of educational facilities specifically tailored for young people with autism. The NAS has its own schools in England. Whether these facilities are 'good' or 'bad', at least they are something. In Northern Ireland we have nothing like this. What we do have is over 25 percent expulsion rate for children on the spectrum.
One guarantee for our young people is that if you do nothing, they will suffer.
Waiting for legislation to pass is in effect, doing nothing, even if it's good legislation. See the links on this page titled "Eddie's Recovery", "Kyle's Recovery, and "1 in 10 Recover from Autism". The NAS are lying and AutismNI/Autism Ulster are conspiring by their silence and refusal to publicise new and important research.
Children do lose their diagnosis and do recover from autism. Thing is, you don't hear about it and there is very little incentive for the NAS or for AutismNI/Autism Ulster to want you to know.
This is major news, but we haven't heard a peep from AutismNI/Autism Ulster. Why would we? When you believe autism is 'forever' or that there is very little that can be done, you can be sure that very little will change. For each and every newly diagnosed child, the same broken wheels turn - depressing diagnosis, no support for the family, limited services for the child, inappropriate nursery/primary school provision, no money, intransigence, etc, etc.
What is the autism Act going to do about this and when?
This is major news, but we haven't heard a peep from AutismNI/Autism Ulster. Why would we? When you believe autism is 'forever' or that there is very little that can be done, you can be sure that very little will change. For each and every newly diagnosed child, the same broken wheels turn - depressing diagnosis, no support for the family, limited services for the child, inappropriate nursery/primary school provision, no money, intransigence, etc, etc.
What is the autism Act going to do about this and when?
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)
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 fundraising 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'?
Perhaps Autism NI/Autism Ulster could answer some of my questions - from my site tracker, they 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 it. If you have questions about the efficacy or need of the proposed legislation, you could post them to this blog because the staff at AutismNI/Autism Ulster are definitely reading this.
Clearly there is something here that interests them. Almost 4000 people have visited this blog so far and I now know of two other parents starting their own blogs to discuss autism in Northern Ireland from their own personal perspective. With so much alleged 'support' being provided to parents by AutismNI/Autism Ulster where is the dissenting view? Surely one or two people have something to say publicly?
Like any good business, (and it is a business) Autism NI/Autism Ulster should understand the importance of a complaint department.
I guess all is rosy in AutismNI/Autism Ulster land? No complaints, no suggestions - no progress. The proposed autism Act has dragged on for years, its simply a stick that AutismNI/Autism Ulster grabs to beat it's own drum.
Legislation like 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. AutismNI/Autism
Ulster is associated with Autism Initiatives (both organisations occupy the same location?? apparently
AutismNI has a deal on the rent at its premises as well). This group, among other things, runs care homes for persons with autism. These homes charge the resident hefty fees (basically one's entire DLA and more) for staying at their residences. People and organisations continue to make money from our children's diagnosis/label. It is for groups like these, that legislation will be for - cozy combination going on there - an organisation that purports to 'help' individuals with autism and their families, and a 'care home' organisation, ready and waiting to put those same kids into group homes. ???
Autism is becoming a make-work project and will continue to be viewed that way until parents understand the difference between what real 'help' is versus maintaining the status quo.
I personally, would support legislation that underpins the right of my child's access to educational opportunities and social opportunities, of his choice. Currently there is no choice in Northern Ireland. No ABA schools. Not one. No autism specific school, not one. The figure of 28 billion spent on autism in the UK certainly does not apply to Northern Ireland. There is no 'menu' to provide to parents with young children who want to help their children early.
Though I don't endorse ABA personally, I believe any parent who wants it for their child should have it. Same goes for other intervention models, that are proven to have measurable outcomes for our kids.
Education for our children at young ages is not just about education, its about 'intervention for the autism, first and foremost addressing the social communication needs of the child. The educational matters come second compared to our children's need to learn social skills and be able to advocate for themselves.
see this website: (www.peatni.org/pdfs/5412_A4_Leaflet.pdf ) for an upcoming ABA conference provided by PEAT (Parent Education as Autism Therapists)
We need legislation to cover the costs of running an ABA, EIBI, RDI, or VB program, Fast Forward, etc. These programs don't come cheap and to run them well requires consultants and staff.
We need legislation to cover the costs of running an ABA, EIBI, RDI, or VB program, Fast Forward, etc. These programs don't come cheap and to run them well requires consultants and staff.
Where is the legislation to secure our children's access to these interventions? These interventions are in my opinion, a medical need. Many of our kids, probably most of them have physical difficulties emanating from neurological and systemic functioning differences these are their clinical needs. The studies on toxic environments, our children's inability to detoxify things like heavy metals, food additives, MSG, vaccinations - these don't even get a look in here in Northern Ireland.
At least PEAT isn't towing anyone's line except their own, which is to help children via ABA. They see their way as the only way but at least they are breaking new ground in Northern Ireland. You have to be single and bloody minded in this province to get anything done.
The NHS should be paying for ABA.
To not provide access to therapeutic programs is denying my child the right to a future. We know these interventions exist but they are very difficult to obtain here in Northern Ireland and more difficult find the money to pay for them. So the majority of us must accept a selection of 'special' or mainstream provision, both of which are usually wholly inadequate for our children.
To not provide access to therapeutic programs is denying my child the right to a future. We know these interventions exist but they are very difficult to obtain here in Northern Ireland and more difficult find the money to pay for them. So the majority of us must accept a selection of 'special' or mainstream provision, both of which are usually wholly inadequate for our children.
This is where legislation is needed. I want an Act that addresses our children's social communication difficulties but furnishes them appropriate and sustainable educational and therapeutic services delivered by specifically trained professionals (not 18 year old underpaid classroom assistants) I can dream. I also would like legislation that doesn't cost other people with disabilities the price of their own services.
This Act is an attempt to 'streamline' the 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. I don't know if this kind of information is discussed at AutismNI/Autism Ulster coffee klatch support groups, but I doubt it. If it was, parents would think twice before signing their name to the Act proposal.
Personally, I do not want my son's diagnosis to be on someones 'list' as a statistic. Considering the number of children recovering from autism worldwide (not in Northern Ireland, mind you - wonder why) I would not want a former label, loaded with stigma to accompany him into adulthood if he did not have the condition. If he continues to have the condition, it's still nobody's business but his. The proposed legislation would be an infringement on my child's right to privacy.
Autism can be and often is, a "co-morbid" condition of other difficulties like Cerebral Palsy, Epilepsy, Down's Syndrome just to name a few. What about those persons who have autism as an addition to their other labels? How will legislation address the 'aut-ism' in these individuals if their first diagnosis is something else?
Clearly the Stormont Assembly have not thought about this judging from their recent ill-informed and mis-informed debate on the topic.
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. 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.
ANNOY A POLITICIAN - THINK FOR YOURSELFThere 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 these services. God forbid, children with autism get appropriate education, social acceptance and understanding, independence even! - oh dear, we can't have that. "No, 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!"
My child doesn't need this legislation. What he does need is the right to an appropriate and fulfilling education and the right to protection from exclusion/segregation/discrimination from society as well as the right to be completely accepted and welcomed in society.
What surprises me about AutismNI/Autism Ulster and their proposal for an autism Act, is that young people who have been through the medical/services system are supporting it. My son, despite his young age, has been maligned, de-valued, patronised and ignored by clinicians and so-called 'professionals, the kind of people this Act would inevitably support.
I am quite sure, he would ask instead for schools that accept him unconditionally, for teachers who don't judge him and who see the wonder in him and who take the time to read a book or two or attend conferences not presented by AutismNI/Autism Ulster, and who listen to parent experts like me. He would ask for social opportunities where young children and adults don't stare at him when he stims or who understand that everything he does has a reason behind it, and all those things make him unique, just like them, not 'different'. My other children would like to be able to go out as a family and know that their little brother is not going to be the butt of someone elses' joke or ignorant comment.
Would my child ask for legislation to ensure the continued employment of the paediatrician who told his mother that he would never talk and should be institutionalised at a tender age?
I doubt it.
There are so many parents who continue to buy the negativity, hook line and sinker, 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.
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 these services. God forbid, children with autism get appropriate education, social acceptance and understanding, independence even! - oh dear, we can't have that. "No, 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!"
My child doesn't need this legislation. What he does need is the right to an appropriate and fulfilling education and the right to protection from exclusion/segregation/discrimination from society as well as the right to be completely accepted and welcomed in society.
What surprises me about AutismNI/Autism Ulster and their proposal for an autism Act, is that young people who have been through the medical/services system are supporting it. My son, despite his young age, has been maligned, de-valued, patronised and ignored by clinicians and so-called 'professionals, the kind of people this Act would inevitably support.
I am quite sure, he would ask instead for schools that accept him unconditionally, for teachers who don't judge him and who see the wonder in him and who take the time to read a book or two or attend conferences not presented by AutismNI/Autism Ulster, and who listen to parent experts like me. He would ask for social opportunities where young children and adults don't stare at him when he stims or who understand that everything he does has a reason behind it, and all those things make him unique, just like them, not 'different'. My other children would like to be able to go out as a family and know that their little brother is not going to be the butt of someone elses' joke or ignorant comment.
Would my child ask for legislation to ensure the continued employment of the paediatrician who told his mother that he would never talk and should be institutionalised at a tender age?
I doubt it.
There are so many parents who continue to buy the negativity, hook line and sinker, 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.
We also need more parents to make their voices and the voices of their children heard. I implore parents to stand up and be counted minus the shackles of autism charities and voluntary groups who in the main, seem to be telling you what to do. I can remember contacting the NAS years ago with a query about an article I was writing. I was advised immediately that if I was a member of their organisation that anything I wrote had to be vetted by them first. I was not a member and politely told this NAS staffperson where to stick her organisation's stasi-like policy. The NAS just like AutismNI/Autism Ulster like to believe they speak for you and me. You and me know that it's impossible to be all things to all people. They end up serving themselves first and sometimes our children don't even get a look in.
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.
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?
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.
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.
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