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:(http://www.newsletter.co.uk/news/Concerns-raised-about-planned-autism.4573431.jp)
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: (http://www.theyworkforyou.com/ni/?id=2008-11-24.7.27)after 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, 27 March 2009
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:
http://www.dhsspsni.gov.uk/meeting-with-society-of-parents-and-friends-of-muckamore-abbey-abbey.pdf.
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 3, a clinician working working with him suggested that due to his hyperactivity and unmanageability 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"
Part of my personal "war" is to prevent my child being institutionalised and to keep him safe from people who think that way. Any other parent would want the same. Belief systems are harming my child and many other children, adults and families.
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, 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. For some, the lucky ones, the tour ends after a few years or maybe a decade. For the rest of us, we are lifetime recruits with no pension.
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's not the part that bothers me. 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). Mind you, the "excellence" part was dropped from its title 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. The arrogance pops up everytime someone from the government or other sector covers up their ignorance of autism by appearing to know what they are talking about when in fact they should confess to knowing very little and at least be honest about the current state of affairs.
If these people knew what they were doing in Northern Ireland, if they were using and promoting best practice we wouldnt have this mess. As it stands children face a post code lottery to get a statement or classroom assistant. SLT and OT are very thin on the ground. Training for teachers and training for parents/carers is even less.
There are also serious issues facing adults who have an ASD in Northern Ireland as well as their families/carers. Most adults who have autism have very little hope of obtaining work or of living independently. Many of these adults have unaddressed co-morbid conditions that have wreaked havoc in their lives. Commitment to persons with an ASD is not present in Northern Ireland.
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. The Society for the Autistically Handicapped must have undergone some very radical changes to have it's name changed to Autism Independent! (http://www.autismuk.com/)
Who decided that all children in Northern Ireland could only be taught via the TEACCH method? Was a deal done between North Carolina (its birthplace) 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 is like giving cocaine to an addict - it's the last thing you want to do and in my opinion, it's criminal.
Our children are the "handicapped" of the 21st century. The hierarchy of disability is alive and well in Northern Ireland, with our children being at the very bottom. With all the political correctness in the world, it hasn't changed the value judgements persons make regarding autism and other developmental disabilities. These value judgements continue to relegate our children to segregated and inappropriate special schools, or to mental institutions away from the rest of society. Entire families are affected by other people's beliefs and if you talk to 3 families who care for a loved one with autism, at least 2 of them have been, or are in distress of some description.
If you want something different for your child or you want something more, this is where you will be embroiled in a number of aspects of this war, namely money and beliefs. With one mindset about our children, I suspect the school boards and health trusts ask themselves why they should spend money on children who are not going to amount to much.
If you want ABA or RDI or even a mainstream education for your child, you may well have to go through Tribunal to get it. The legal department and special education at your local board are two separate entities and its of little consequence to your local special advisory assistant whether you lodge a tribunal or not, because the legal costs aren't going to come out of his budget, so fire away at this war all you want but remember, your kid has an IQ of 70, never forget that! Never forget that a place at a special school is waiting for him, his chair is nice and warm.
If you want a special school place for your child, that is well and good, but your child deserves a choice. In England there are autism specific schools, schools that work with autistic children only, schools run by the NAS, independent schools and private schools. We don't have that choice here. So if your child is in a special school ask yourself, if there was a better choice, would he be there?
If you feel yourself getting angry at that question I posed, ask yourself if you are justifying your child's placement at a Northern Ireland special school because of his need, or because you had no other option? Personally, I would have loved an autism specific school for my boy, one where they understood his personal complex sensory and how it affected his learning. A school of total acceptance, a school just for him. One can dream. I am entitled, however to ask for it and fight for it. Just because every other kid goes to a special school doesn't mean mine is going there, or should go there.
We are very parochial here in Northern Ireland and nothing is frowned upon more than rocking the boat or being the odd one out. Conformity, where autism is concerned will never do our children justice. If you want it, you have to ask for it. I know there are parents who are very unhappy with their children's educational provision and who are demanding educational options for their children. I know you are out there, I have heard you, as parents, talking amongst yourselves. It's the education boards and government that needs to hear you though.
Back to beliefs again. Your child, if he has autism, will probably be tested as having an IQ of 70, a borderline "learning disability". There is nothing that says autism is a learning disability, in fact autism is diagnosed based on behavioural criteria. However, the reluctance to spend money on providing individualised learning programs to children with an ASD is easily covered up by labelling most of them with borderline learning problems.
The belief here is that children with autism can't learn, or don't learn well or learn so differently that it's not worth spending the money on them. I know many children and adults with IQ's that exceed my own (though not hard to do) but that are in the genius range despite being tested as very low as children. This is not to say that learning disabilities don't occur in the autistic population. However, a child who is so caught up with his sensory feedback needs or is possibly in physical pain, who only has a half hour window per day to learn is not going to be gaining knowledge at the level of his peers. Does he have a learning disability or has he got a hot wired brain?
It's often only a "belief" that there is a learning disability associated with our kids. It becomes a reality when an educational psychologist presents a test to our children totally inappropriate for their language or attention ability. (there is no "normed" autistic population and these tests can never be normed either) - they border on the unethical, particularly when they are given to young children with little or no language and no knowledge of social communication. Further, they have no bearing on what the child will be taught or how - they are administered simply to weed out those who need special assistance (costs money) and those who don't.
As parents we know how bright our children are - in fact in many ways, brighter than their peers considering the amount of chemicals firing through their brain every day. I know how to reach my child when I am teaching him something new. However, to deliver the kind of teaching I do, into a schoolroom would cost a lot and take too much of the teacher's time, so instead children like my son might get a nice new label of learning disabled, one that will likely follow them throughout their entire lives.
The final assault in this triad of curtailment is arrogance - the kind of arrogance parents experience from paediatricians, teachers, speech therapists, occupational therapists, and anyone else really, who does not know what they are talking about but try to fluff it up with a bit of jargon like "Kanner's autism" or "asBergers syndrome". I could forgive a naive teacher. I could even forgive a not so naive teacher, because teacher's are getting it in the neck, with no support and limited training.
What I can't forgive, is those who are charged with helping our children, and who are paid well for it, who don't know about autism. Some of these people sit on autism specific committees in both the government, and health sectors.They sputter and spit about autism. Their civil servants write their scripts for Stormont. They to and fro about autism as if they actually knew something about it. They get locked into one path with blinders on, and it quickly becomes too expensive money and time wise to veer off that path. Thus, new approaches, ideas, concepts become too difficult to implement - that all costs money. Parents are still being given ASD diagnosis for their children in paediatric clinics all over the North, and are still being told to just come back in 6 months time. What happened to early intervention? Why is it that a diagnosis of ASD, viewed by the rest of the world as a serious developmental disability is not being taken seriously by the Department of Health here? Why is early intervention only important for other countries but not here?
I do not have time to lobby government, to educate my political representatives, nor do I have time to attend groups. The autism war in Northern Ireland has forced me and most parents to rely on "leadership" to get us out of this mess. Leadership is all sewn up, in organisations like AutismNI and of course within the statutory sector. It was that leadership that caused the mess in the first place because it wasnt made up of parents. We currently do not have any leadership in Northern Ireland regarding autism. If I believed that there were 30 other parents out there who were willing to stand up publicly and take on organisations like AutismNI and the NAS and the government, I might get involved. But it looks like most parents who want their voice heard are very isolated. One sees the odd article in the paper from a pissed off parent, (see link to the right entitled, "is anyone going to help my son") but generally the voices of parents have been absorbed into sound proof rooms somewhere.
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, time that continues to be stolen from our children and can never be bought back.
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:
http://www.dhsspsni.gov.uk/meeting-with-society-of-parents-and-friends-of-muckamore-abbey-abbey.pdf.
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 3, a clinician working working with him suggested that due to his hyperactivity and unmanageability 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"
Part of my personal "war" is to prevent my child being institutionalised and to keep him safe from people who think that way. Any other parent would want the same. Belief systems are harming my child and many other children, adults and families.
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, 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. For some, the lucky ones, the tour ends after a few years or maybe a decade. For the rest of us, we are lifetime recruits with no pension.
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's not the part that bothers me. 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). Mind you, the "excellence" part was dropped from its title 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. The arrogance pops up everytime someone from the government or other sector covers up their ignorance of autism by appearing to know what they are talking about when in fact they should confess to knowing very little and at least be honest about the current state of affairs.
If these people knew what they were doing in Northern Ireland, if they were using and promoting best practice we wouldnt have this mess. As it stands children face a post code lottery to get a statement or classroom assistant. SLT and OT are very thin on the ground. Training for teachers and training for parents/carers is even less.
There are also serious issues facing adults who have an ASD in Northern Ireland as well as their families/carers. Most adults who have autism have very little hope of obtaining work or of living independently. Many of these adults have unaddressed co-morbid conditions that have wreaked havoc in their lives. Commitment to persons with an ASD is not present in Northern Ireland.
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. The Society for the Autistically Handicapped must have undergone some very radical changes to have it's name changed to Autism Independent! (http://www.autismuk.com/)
Who decided that all children in Northern Ireland could only be taught via the TEACCH method? Was a deal done between North Carolina (its birthplace) 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 is like giving cocaine to an addict - it's the last thing you want to do and in my opinion, it's criminal.
Our children are the "handicapped" of the 21st century. The hierarchy of disability is alive and well in Northern Ireland, with our children being at the very bottom. With all the political correctness in the world, it hasn't changed the value judgements persons make regarding autism and other developmental disabilities. These value judgements continue to relegate our children to segregated and inappropriate special schools, or to mental institutions away from the rest of society. Entire families are affected by other people's beliefs and if you talk to 3 families who care for a loved one with autism, at least 2 of them have been, or are in distress of some description.
If you want something different for your child or you want something more, this is where you will be embroiled in a number of aspects of this war, namely money and beliefs. With one mindset about our children, I suspect the school boards and health trusts ask themselves why they should spend money on children who are not going to amount to much.
If you want ABA or RDI or even a mainstream education for your child, you may well have to go through Tribunal to get it. The legal department and special education at your local board are two separate entities and its of little consequence to your local special advisory assistant whether you lodge a tribunal or not, because the legal costs aren't going to come out of his budget, so fire away at this war all you want but remember, your kid has an IQ of 70, never forget that! Never forget that a place at a special school is waiting for him, his chair is nice and warm.
If you want a special school place for your child, that is well and good, but your child deserves a choice. In England there are autism specific schools, schools that work with autistic children only, schools run by the NAS, independent schools and private schools. We don't have that choice here. So if your child is in a special school ask yourself, if there was a better choice, would he be there?
If you feel yourself getting angry at that question I posed, ask yourself if you are justifying your child's placement at a Northern Ireland special school because of his need, or because you had no other option? Personally, I would have loved an autism specific school for my boy, one where they understood his personal complex sensory and how it affected his learning. A school of total acceptance, a school just for him. One can dream. I am entitled, however to ask for it and fight for it. Just because every other kid goes to a special school doesn't mean mine is going there, or should go there.
We are very parochial here in Northern Ireland and nothing is frowned upon more than rocking the boat or being the odd one out. Conformity, where autism is concerned will never do our children justice. If you want it, you have to ask for it. I know there are parents who are very unhappy with their children's educational provision and who are demanding educational options for their children. I know you are out there, I have heard you, as parents, talking amongst yourselves. It's the education boards and government that needs to hear you though.
Back to beliefs again. Your child, if he has autism, will probably be tested as having an IQ of 70, a borderline "learning disability". There is nothing that says autism is a learning disability, in fact autism is diagnosed based on behavioural criteria. However, the reluctance to spend money on providing individualised learning programs to children with an ASD is easily covered up by labelling most of them with borderline learning problems.
The belief here is that children with autism can't learn, or don't learn well or learn so differently that it's not worth spending the money on them. I know many children and adults with IQ's that exceed my own (though not hard to do) but that are in the genius range despite being tested as very low as children. This is not to say that learning disabilities don't occur in the autistic population. However, a child who is so caught up with his sensory feedback needs or is possibly in physical pain, who only has a half hour window per day to learn is not going to be gaining knowledge at the level of his peers. Does he have a learning disability or has he got a hot wired brain?
It's often only a "belief" that there is a learning disability associated with our kids. It becomes a reality when an educational psychologist presents a test to our children totally inappropriate for their language or attention ability. (there is no "normed" autistic population and these tests can never be normed either) - they border on the unethical, particularly when they are given to young children with little or no language and no knowledge of social communication. Further, they have no bearing on what the child will be taught or how - they are administered simply to weed out those who need special assistance (costs money) and those who don't.
As parents we know how bright our children are - in fact in many ways, brighter than their peers considering the amount of chemicals firing through their brain every day. I know how to reach my child when I am teaching him something new. However, to deliver the kind of teaching I do, into a schoolroom would cost a lot and take too much of the teacher's time, so instead children like my son might get a nice new label of learning disabled, one that will likely follow them throughout their entire lives.
The final assault in this triad of curtailment is arrogance - the kind of arrogance parents experience from paediatricians, teachers, speech therapists, occupational therapists, and anyone else really, who does not know what they are talking about but try to fluff it up with a bit of jargon like "Kanner's autism" or "asBergers syndrome". I could forgive a naive teacher. I could even forgive a not so naive teacher, because teacher's are getting it in the neck, with no support and limited training.
What I can't forgive, is those who are charged with helping our children, and who are paid well for it, who don't know about autism. Some of these people sit on autism specific committees in both the government, and health sectors.They sputter and spit about autism. Their civil servants write their scripts for Stormont. They to and fro about autism as if they actually knew something about it. They get locked into one path with blinders on, and it quickly becomes too expensive money and time wise to veer off that path. Thus, new approaches, ideas, concepts become too difficult to implement - that all costs money. Parents are still being given ASD diagnosis for their children in paediatric clinics all over the North, and are still being told to just come back in 6 months time. What happened to early intervention? Why is it that a diagnosis of ASD, viewed by the rest of the world as a serious developmental disability is not being taken seriously by the Department of Health here? Why is early intervention only important for other countries but not here?
I do not have time to lobby government, to educate my political representatives, nor do I have time to attend groups. The autism war in Northern Ireland has forced me and most parents to rely on "leadership" to get us out of this mess. Leadership is all sewn up, in organisations like AutismNI and of course within the statutory sector. It was that leadership that caused the mess in the first place because it wasnt made up of parents. We currently do not have any leadership in Northern Ireland regarding autism. If I believed that there were 30 other parents out there who were willing to stand up publicly and take on organisations like AutismNI and the NAS and the government, I might get involved. But it looks like most parents who want their voice heard are very isolated. One sees the odd article in the paper from a pissed off parent, (see link to the right entitled, "is anyone going to help my son") but generally the voices of parents have been absorbed into sound proof rooms somewhere.
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, time that continues to be stolen from our children and can never be bought back.
Sunday, 15 March 2009
The Voice of Autism in Northern Ireland
AutismNI, 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.
AutismNI have a lot of staff and they seem to have lots of money. At first glance, it would appear they are doing something useful. No charity could be in existence for 20 years with that kind of money (I think they have 24 staff now, maybe more) and not be doing good work. No charity could have the same CEO for so long together with other long standing members and not be top of their field in knowledge about the condition.
There are other charities I have worked with in Northern Ireland, namely the NAS (National Autism Society) and the Aspergers Network. I have had tangible help from both of them, particularly the Aspergers Network (despite the fact my child does not have a diagnosis of Aspergers) AutismNI, however has never been of any help to me - maybe it is the relentless fundraising they do, (there are at least 15 links on their site to donate/bequeath/fundraise or purchase something), or maybe its the fact that no information on their website was of any use to me. The acronym IEP does not appear to exist on the website, nor does the word tribunal or judicial review. Voluminous research and studies are published every day regarding autism, so much that it would be difficult to read it all, but AutismNI doesn't seem to know about it, or want others to know.
Neither the NAS (the UK wide Autism Charity) or the Aspergers Network are mentioned on the site. Yet, 'Irish Autism Action', and the 'Scottish Autism Society' are. Why would I contact these organisations when representatives of the biggest Autism Charity (NAS) in the UK are local?
Apparently AutismNI has 19 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 AutismNI, maybe a phone line in someone's home is a group. Its hard to know because AutismNI 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 the vehicle of AutismNI.
At the helm of AutismNI 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. Now, many parents do see a connection between large pharmaceutical companies and the rise in autism, so maybe AutismNI was happy to receive an award from a company that might help keep bums on seats in AutismNI. Who knows what the reasons were but from the viewpoint of this parent, this was very bad form altogether. I am surprised that parents who are members of AutismNI have not howled about this, particularly parents who suspect, instinctually believe or who know that vaccinations caused their children to develop autism.
You can see from this link (http://www.corpwatch.org/article.php?id=15208) what Glaxo Smithkline have been accused of lately and its not good.
Why would an autism charity of all things, accept funds from a pharmaceutical company that produces vaccinations? If this produced even the slightest chance of alienating potential members or besmirching reputation, why do it?
AutismNI regularly posts 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 suiting parents who want to work part-time) and this 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 what this means. 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 have never seen anything like this in a job description before.
I think there are a lot of issues with AutismNI. It might consider itself to be the voice of autism in Northern Ireland but has this been achieved by the silencing of the collective voices of parents and individuals who have autism? AutismNI is well funded and collects money for autism across Northern Ireland. It is well supported by MLA's and is accorded respect by other UK autism groups and charities. Where parents are shouting from the rooftops about lack of services or inadequate provision, AutismNI does not, either via its website or via the media. I have been to meetings in various parts of Northern Ireland, attended by parents who were at their wits end regarding services and the general terrain regarding autism in Northern Ireland. Many of these parents were very vocal. AutismNI was not.
For parents of children who have an ASD, their computers can be a lifeline, affording access to information that simply cannot be sought otherwise due to time and mobility constraints. I dont see information on how to stay sane as a carer, nor do I see any ideas on how to write OT and SLT into a child's statement. I don't see anything that would empower a parent, only links to others that might. With the amount of manpower AutismNI has one would think their website would offer parents more to work with, more useable information. It wants to be a one-stop shop, but for many parents, I can't see them being anything but the last stop.
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 taking service providers to task would be much more helpful. Lobbying for an Autism Act is a safe option, an easy option and considering it hasn't happened and won't happen in the immediate future, who cares? How much has the lobbying for this act cost? It's wonderful having rights, but rights to what? We don't have the infrastructure yet for rights. My child currently has a statement of educational needs which is supposed to accord him rights, and even that has failed.
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
This is a joke and I dare AutismNI to try and fund and roll this one out as credible. Should I start my application to the Victim's Commission anyway? 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 afterall? 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 special education need 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 with ASD's being relegated to "special" (not so special) schools. If your child has autism and you rely on AutismNI or any other group to do anything for him, he will still have autism 20 years from now, only difference is he will have seen a lot of balloons and you will have drunk a lot of coffee.
AutismNI have a lot of staff and they seem to have lots of money. At first glance, it would appear they are doing something useful. No charity could be in existence for 20 years with that kind of money (I think they have 24 staff now, maybe more) and not be doing good work. No charity could have the same CEO for so long together with other long standing members and not be top of their field in knowledge about the condition.
There are other charities I have worked with in Northern Ireland, namely the NAS (National Autism Society) and the Aspergers Network. I have had tangible help from both of them, particularly the Aspergers Network (despite the fact my child does not have a diagnosis of Aspergers) AutismNI, however has never been of any help to me - maybe it is the relentless fundraising they do, (there are at least 15 links on their site to donate/bequeath/fundraise or purchase something), or maybe its the fact that no information on their website was of any use to me. The acronym IEP does not appear to exist on the website, nor does the word tribunal or judicial review. Voluminous research and studies are published every day regarding autism, so much that it would be difficult to read it all, but AutismNI doesn't seem to know about it, or want others to know.
Neither the NAS (the UK wide Autism Charity) or the Aspergers Network are mentioned on the site. Yet, 'Irish Autism Action', and the 'Scottish Autism Society' are. Why would I contact these organisations when representatives of the biggest Autism Charity (NAS) in the UK are local?
Apparently AutismNI has 19 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 AutismNI, maybe a phone line in someone's home is a group. Its hard to know because AutismNI 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 the vehicle of AutismNI.
At the helm of AutismNI 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. Now, many parents do see a connection between large pharmaceutical companies and the rise in autism, so maybe AutismNI was happy to receive an award from a company that might help keep bums on seats in AutismNI. Who knows what the reasons were but from the viewpoint of this parent, this was very bad form altogether. I am surprised that parents who are members of AutismNI have not howled about this, particularly parents who suspect, instinctually believe or who know that vaccinations caused their children to develop autism.
You can see from this link (http://www.corpwatch.org/article.php?id=15208) what Glaxo Smithkline have been accused of lately and its not good.
Why would an autism charity of all things, accept funds from a pharmaceutical company that produces vaccinations? If this produced even the slightest chance of alienating potential members or besmirching reputation, why do it?
AutismNI regularly posts 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 suiting parents who want to work part-time) and this 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 what this means. 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 have never seen anything like this in a job description before.
I think there are a lot of issues with AutismNI. It might consider itself to be the voice of autism in Northern Ireland but has this been achieved by the silencing of the collective voices of parents and individuals who have autism? AutismNI is well funded and collects money for autism across Northern Ireland. It is well supported by MLA's and is accorded respect by other UK autism groups and charities. Where parents are shouting from the rooftops about lack of services or inadequate provision, AutismNI does not, either via its website or via the media. I have been to meetings in various parts of Northern Ireland, attended by parents who were at their wits end regarding services and the general terrain regarding autism in Northern Ireland. Many of these parents were very vocal. AutismNI was not.
For parents of children who have an ASD, their computers can be a lifeline, affording access to information that simply cannot be sought otherwise due to time and mobility constraints. I dont see information on how to stay sane as a carer, nor do I see any ideas on how to write OT and SLT into a child's statement. I don't see anything that would empower a parent, only links to others that might. With the amount of manpower AutismNI has one would think their website would offer parents more to work with, more useable information. It wants to be a one-stop shop, but for many parents, I can't see them being anything but the last stop.
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 taking service providers to task would be much more helpful. Lobbying for an Autism Act is a safe option, an easy option and considering it hasn't happened and won't happen in the immediate future, who cares? How much has the lobbying for this act cost? It's wonderful having rights, but rights to what? We don't have the infrastructure yet for rights. My child currently has a statement of educational needs which is supposed to accord him rights, and even that has failed.
The hard work that really needs to be done in Northern Ireland involves a tough examination and overhaul of existing services, the training and hiring of experienced and trained individuals who are going to do the work, and a strategy to tackle the societal ignorance about autism.
Considering AutismNI is employing people funded by the the health trusts, the same people who are responsible for delivering many existing services, I guess that is not going to happen anytime soon. Bite the hand that feeds you springs to mind.
I had hoped that following AutismNI'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 havent 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 politicans posing in Washington. I am not aware that anyone from the National Autistic Society was invited to go, or indeed did go despite the fact they have been in existence in Northern Ireland now for the past 4 years or so. Only one of the many MLA's (John McCallister, South Down) registered their interest regarding this trip, with the Northern Ireland Assembly. We don't know if the various political parties 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: (http://www.niassembly.gov.uk/members/expenses/register2.htm)
On another note, Illuminating comments from AutismNI CEO Arlene Cassidy were made here ( http://www.niassembly.gov.uk/health/2007mandate/minutes/2008/081113.htm ) when Carmel Hanna asked Arlene Cassidy why there was no support or relationship between AutismNI and the NAS. Arlene said she didn't know??? When she asked the question, Ms Hanna (MLA) 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 dont 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.
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 to funding a few children's classroom assistants or bumping up the low wage that AutismNI pays its 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 for that matter. 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 near enough minimum wage. Here is the link: (http://www.pfgbudgetni.gov.uk/autism_ni.pdf)
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 who have a website and large membership should place their Annual Report online. And while you are at it, maybe you could find out if AutismNI is actually called AutismNI or if they are really called Autism Ulster and if so, where the monies raised by AutismNI actually go, i.e. AutismNI or Autism Ulster.
Its 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: www.autismni.org/news/ebulletin%20janfeb09pdf.pdf) 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
This is a joke and I dare AutismNI to try and fund and roll this one out as credible. Should I start my application to the Victim's Commission anyway? 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 afterall? 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 special education need 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 with ASD's being relegated to "special" (not so special) schools. If your child has autism and you rely on AutismNI or any other group to do anything for him, he will still have autism 20 years from now, only difference is he will have seen a lot of balloons and you will have drunk a lot of coffee.
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.
I am a parent and a mother of a child who has autism. We live in Northern Ireland. The system has failed my child and my family many times. No surprises there as it fails people all over the world. What really irks me is the unwillingness of those individuals who work in that system to learn from their failure and take responsibility. There are very few, autism "experts" here who are not parents of children with autism. Yet we rarely hear from them. I am one of those experts. No one understands my boy's particular autism the way I do and no one can help him as much as me.
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.
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.
I am a parent and a mother of a child who has autism. We live in Northern Ireland. The system has failed my child and my family many times. No surprises there as it fails people all over the world. What really irks me is the unwillingness of those individuals who work in that system to learn from their failure and take responsibility. There are very few, autism "experts" here who are not parents of children with autism. Yet we rarely hear from them. I am one of those experts. No one understands my boy's particular autism the way I do and no one can help him as much as me.
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.
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