Autism Ulster/Autism NI together with an events company are organising an autism conference for July 2010 in Belfast (after a full month online, the link to the conference is today, inaccessible (under construction) - maybe AutismNI read this blog and are rearranging their fee schedule to make the conference accessible to parent/carers?)
If you have £450.00 to spare, you can attend this two day event. If you book early or if you are selected to present a plenary session you will save £100.00. I do not understand why AutismNI/AutismUlster with their 24 staff had to hire an events company to organise this conference as surely that many staff should be able to prepare a conference with ease. They are after all 'autism experts'. I expect that the fundraising efforts from parents like these (see: eyhttp://www.tyronetimes.co.uk/2617/Mum-tells-of-daily-battle.5280054.jp) will help AutismNI/AutismUlster pay the bills from the events company and more.
Last weekend, PEAT (Parent Education as Autism Therapists) presented a comprehensive two day ABA conference (applied behavioural analysis) and brought some of the biggest names in the world to Belfast at a vastly reduced fee compared to the proposed AutismNI/Autism Ulster 2010 conference. (£60.00 for parents) The PEAT conference was well attended by parents and provided real help to those who want to 'intervene' their children's autism with ABA. PEAT is not well funded, is relatively new to the scene compared to AutismNI/Autism Ulster but has managed to give parents tangible and sustained advice and assistance that no one else in Northern Ireland ever has. Whether or not you agree philosophically with ABA or not, at least PEAT is doing something different and provides an avenue to parents to meet their children's individual educational needs.
PEAT's name and website links have been added recently to the AutismNI/AutismUlster site (though you do have to scroll through their links page to find it). Unlike the other 3 autism charities in Northern Ireland (NAS, Aspergers Network and Eagle Project) PEAT must have found favour with Autism NI/Autism Ulster.
I would ask the mother referred to in the weblink above how she thinks raising £2500.00 and giving it to AutismNI/AutismUlster is going to benefit her boy. I wonder if some of her fundraising might be used to permit admission for a few parents to the upcoming conference. £2500.00 will pay for five parents to attend. 'Company Store' springs to mind here. I also wonder what the membership of the charity think about the fact that most of them will not be able to attend a conference that their membership fees and annual fundraising efforts have paid for. Nice. Really ladies and gentlemen, it is time to wake up. I know that some of the membership are not happy with this proposed conference, but I ask you who are not happy, have you voiced your concerns? Did you write a letter to the paper, to the CEO? Are you afraid to do so? Do you think it would make a difference if you did? Just surmising.
Back to this young mum and her Great Wall of China idea - will the money she raises be used to provide her son with direct services or will it be scoffed to fly more MLA's off to Washington? I note in the linked article about her, that Michelle O'Neill (SF) has a few comments to make about how difficult it is here in Northern Ireland - as she was one of the selected MLA's to attend the December 2007 AutismNI/Autism Ulster junket to Washington, maybe she could tell us what her trip did for this young mum. Maybe she would like to give this young mum back, the money it cost to fly her, wine and dine her, in Washington? What about it Michelle? Put your money where your mouth is. I distinctly remember talking to Michelle O'Neill about autism years ago and in the middle of our conversation she related to me how 'she had children'. I never did figure out what relevance that had to the issues I was bringing to her. That was pre-Washington. I presume she is clued up now?
The China trekking mum of 3 is no doubt genuine in her efforts to help others by helping the 'local' autism charity. Charity regarding our children, however, begins at home and if she likes I will gladly give her all the help and advice she needs to get her boy statemented and into a suitable program of autism intervention of her choice. I will make sure she knows that there are choices out there (and I will direct her how to get the Schoolboard to pay for it. Other parents, no doubt, will be able to tell her who to contact should she need independent legal or educational psychological advice. So much information is for free, if only parents would get together. There is no reason to re-invent the wheel, our pooled knowledge and experience as parents is unmatched. Yet, very few ask us for help.
Not many parents will be coming together at the proposed AutismNI/Autism Ulster conference, not unless they all take out a loan to pay for it and find a free creche to take care of their children for two days. The proposed conference is clearly not for parents, but for the well heeled members of the autism industry.
If I was able to raise £2500.00 I would start my own charity/organisation for my own son and buy him the sensory integration therapy he needs, (non-existent in Northern Ireland) or a Fast Forward Program, something his school 'can't' afford.
The ethics surrounding members of AutismNI/AutismUlster or any autism charity carrying out such fundraising is appallingly questionable. This mum's young child needs her and he needs her now. I suggest that the staff and CEO of AutismNI/Autism Ulster start training for the Great Wall adventure run themselves and leave parents alone. Parents have much to do, particularly parents like this mum. I digress.
Back to the conference...on it's web site linked above, AutismNI/Autism Ulster make a number of references to how beneficial the 2010 conference would be to parents and carers. I suggest any parent interested in attending, to ask your mortgage company or the housing executive to stall your payments for one month so you can attend this conference. Failing that, you could of course save 9 weeks of your Carer's Allowance or a month of your child's DLA in order to attend or apply for a carer's grant - that is if you really want to - the line-up is not exactly earth shattering.
AutismNI/AutismUlster, have been instrumental in continuing to promote the TEACCH Program (Treatment and Education of Autistic and related Communication-handicapped Children) in Northern Ireland. To that end, this conference will feature Gary Mesibov of TEACCH et al. What we as parents have to learn from Gary Mesibov is beyond me. The idea of paying £450.00 to listen to him drone on once again about the marvels of robotising our children is anaethema to me, and I am curious as to whether parents involved with AutismNI/Autism Ulster have ever been given the opportunity or have been heard in their critique of TEACCH.
If parents have voiced their concerns over TEACCH, AutismNI/Autism Ulster have not been listening. TEACCH is of course, lucrative and for Autism NI/Autism Ulster, it has been a good earner via the charity's dedicated company 'ACT'. Teachers like it because it fulfills their generally self fulfilling prophesies about our children ('these' kids can't learn, but they love routine, why bother educating them; they haven't learned the way 'we' teach them, it's their fault, we tried, they are stupid, lets control the damage via TEACCH; let's book a refresher course costing thousands of pounds via AutismNI/Autism Ulster so no one can claim we aren't qualified in how to damage children - most of all never EVER let the parents think their child is capable of learning otherwise the flood gates will open!)
Compare this to some of the more informed and pro-active parents in Northern Ireland who hire autism consultants from abroad, recruit their own dedicated staff, train them, and run full time education programs for their children in their home every day generating copious data collection, weekly reviews, video footage analysis and some of whom attend 3rd level and post graduate studies in ABA/VB/Autism studies) . The 'why bother' mindset of the TEACCH promoters guarantees children who will grow up to live dependent or in a group home. (statistics of independent/employed adults in Northern Ireland who have a diagnosis of autism is appalling in the extreme.)
No one knows where a child will go unless all possibilities are pursued. In Northern Ireland minds have been made up about our children and one thing is guaranteed, if you don't 'do the work' with your child, s/he will suffer for it just like any other child.
The 'system' in Northern Ireland has given up on our children by promoting TEACCH. It's cheap and it expects absolutely nothing. Most of you who have children on the spectrum will know how incredibly bright your child is but teachers dont have the time, money or belief to pursue excellence for our children. Parents have the love and the belief but so often don't have the time or the money. 'Excellence' in terms of provision for our children is the remit of the very few. It costs. It's all about money. School boards know this which is why special schools and TEACCH have flourished here in Northern Ireland. If parents knew the truth about this devastating program, we wouldn't have TEACCH anywhere near us. Try and talk to the head of your local special school about the efficacy or lack of, regarding TEACCH. Guaranteed you won't get very far because even they are uninformed, stuck in a rut and don't bother to do the research to discover that there are other ways to teach.
AutismNI/AutismUlster blather on about being around for 20 years, but nothing new evolves with them, same old same old. I do hope that at least one attendee at this proposed conference will stand up for our children and ask Mr Mesibov and the organisers what exactly TEACCH has done for the children here. No positive outcomes have ever been peer reviewed by the TEACCH organisation and their philosophy has not changed one iota in decades. (that autism is a 'culture', that individuals with autism 'like', 'thrive', 'need' routine, etc bloody etc. The TEACCH program was developed to keep little 'handicapped' children quiet. Please note that the word handicapped still remains in the acronym of TEACCH. In fact the english equivalent of the TEACCH program was until very recently called the 'society for the autistically handicapped'. What are the belief systems of those who subscribe to such language?
A simple google query of 'new autism research' will provide over 1.9 million links, none of which include using the TEACCH method. TEACCH is about damage control, keeping our children functionally autistic, ensuring a new generation of care and group home employees. I recently asked the principal of a large 'severe learning disability' (ugh) school to tell me what the outcomes are for kids who make it to mainstream from the school. This individual replied '1 in 20'. I was not surprised. This school uses TEACCH, as do all of the special schools here. The attitude of this individual towards me was patronising and clearly my question was an uncomfortable one. My question was eventually answered but only after much speculation to my motives for asking it. ('oh no, another parent in denial who thinks her kid can learn' and even worse, that thinks I should be able to teach him).
I could see to some degree why parents are put off asking questions about the TEACCH program and questions in general, if what they get is psycho/social interrogation for asking the question in the first place. God forbid that any parent in Northern Ireland thinks special schools are not delivering to our children. I believe this particular teacher knew exactly what my 'motive' was. Further, the individual knew the answer to my question was not going to be pretty. Labelling children with severe learning disabilities is a catch all phrase that conveniently lets school boards and teachers off the hook from trying to help our children. When no one believes in your child, how can the child flourish? Even a plant needs basic sunlight and water to blossom. I don't think Northern Ireland believes our kids will ever blossom and deliberately keep them in the 'shade'. I also believe that 'they' (schools/society) are afraid of what they might find should our kids find the 'sun'. If 'they' dared try something new, spent a bit of money and its successful, what would be the backlash from parents whose children came before? Better to convince all parents that their kids haven't a hope, that way no one will complain. Pity some parents believe this B.S., actually a lot of parents which is why we are in such a rut here.
Which is also why AutismNI/Autism Ulster has the cheek to bring Gary Mesibov and other people like Jerry Newport (neurodiversity proponent) to Northernn Ireland with complete impunity. If you don't know what 'neurodiverse' means or why it was coined, you have much reading to do - google it. Northern Ireland is ripe for this B.S. and I can see it coming as a further way to save money.
I have promised before to go into further detail about the TEACCH method but to be honest, it is too painful for me. I have great difficulty thinking about this program without feeling sick to the pit of my stomach. I don't hear parents begging for TEACCH, I don't know of any parents going to tribunal asking for a TEACCH program. That says a lot.
90 miles to the South and 200 miles across the water, you find ABA schools, autism specific schools, but here Mr Mesibov's practices keep us in the dark ages regarding autism.
I hope that any parents who intend on attending this conference ensure they get a substantially reduced or free admission. There is no mention in the link to this conference about a reduction for parents, except that if you book early you will save a bit of money.
The conference is not for parents. AutismNI/Autism Ulster changed it's name from PAPA (parents and professionals autism) for a reason. If you want to keep parents out, you charge whacks of money to get in. Those who will be attending this conference will be professionals looking for a couple of days away from their desks, and whose budgets can pay for it.
Researchers and bright minds in autism are not going to attend this conference, nor have they been invited. AutismNI/Autism Ulster can claim the moon is made of green cheese as easily as they can tout this conference as 'one of the most important international conferences dealing with autism in 2010'. Actually, there will be hundreds of conferences regarding autism in 2010 all over the world, with attendees who are at the top of their research field. AutismNI/Autism Ulster is not in any way known for its research capability, their website is one example of that, and anyone who has something new to share in the field of autism will be hard pressed to take the time or make the effort to come to this conference. Why would they? Researchers needs peer review, their peers won't be here. AutismNI/Autism Ulster does not have the capability to scrutinise research, much less provide its dissemination.
'Smoke and mirrors' conference would be a better title. Here is a list of some other autism conferences taking place in the coming year, all at a substantially lower price and with better line-ups than the one described above. see: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=140&a=5891 .
I would suggest to parents that we present our own conference, the line-up made up only of parent experts. If we charged £450.00 a head, we could raise enough money to build a new autism specific school or send us all to Washington on an autism fact finding junket, one that would actually amount to something.
