Friday, 3 July 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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