My blog entry regarding ABA(Applied Behavioural Analysis) in Northern Ireland see:(http://autismnorthernireland.blogspot.com/2011/04/aba-science-for-sale-in-free-market.html) has garnered so many responses that they really deserve a blog post of their own. Since my 1 April post regarding ABA, I have had over 20 individuals including families, teachers and international ABA providers who pose serious questions about the role and 'state' of ABA in Northern Ireland.
The very sad, prehistoric and ultimately negative attitudes of some autism charities, educationalists, and other 'professionals' in Northern Ireland who regard our children as 'incurable', or as having a 'lifelong' condition that is genetic and therefore untreatable has created a vacuum that sucks up and disposes anything that might be construed as positive, and ultimately helpful for our children. There seems to be a bit of a conspiracy theory in Northern Ireland regarding ABA resulting in an 'us vs them' battle. Parents and their children are the ultimate losers in this war and no matter what 'camp' a parent is in, neither they or their child will 'win'. It suits private ABA providers to create 'sides' and to create scarcity and a certain 'preciousness' about what they do. Parents are lured to ABA because anything is better than what is currently on offer and there is no doubt that parents will pay for the opportunity of obtaining 'better'. The efficacy of ABA, however, is getting lost in the fighting and in the profiteering.
We have an autism 'industry' that requires our children to remain as 'autistic' as possible, so that cozy jobs can be maintained. It's akin to millions of pounds being spent on trying to educate the public about health, yet having off-licences and pubs on every corner, bad food and cigarettes readily available to most people. I still hear of doctors handing out 'nerve pills' to parents who want them, instead of writing letters on their patients' behalf to MP's and MLA's demanding more support and help.
It's a safe bet that anyone who purports to be working to 'help' children/individuals with autism will currently be making money. Faith healers, drug companies, nutritional supplement companies, ABA providers, TEACCH 'teachers', OT's, SLT's, psychologists, special education advisors, paediatricians...the list goes on, they all are employed, many of them making a very good wage, both privately and publicly funded, and they all are making their money off of our children's autism. Autism is a definite money maker and a job keeper.
Universally, as much as autism is presented as a 'drain' and strain on health services, it is also a cash cow for anyone who can think up a new way (or old way) to dip into the pockets of parents/carers who will do just about anything to help their precious children.
Below are some of your comments to my ABA blog post. I could not post these responses directly in the comments section. They had to be edited not only to protect myself but also the poster, their nature often being inflammatory and/or libelous.
I would not want to print anything that may risk litigation being pursued against a family who has just spent all its money on an ABA provider. It would be difficult to imagine the company that you have just paid your life savings to, or remortgaged your house to pay, to then sue you for libel.
In the future, could I ask anyone who comments on this blog to refrain from naming individuals and/or companies. Even though the same names keep on coming up in your comments, I cannot print them. From some of your comments though, I would suggest you take legal action against those companies as they have done a disservice against your children. I do hope to those who have commented, that you have retained copies of your contracts that you signed with these companies and that you have had a solicitor look at them. In my opinion, and considering the costs of ABA in Northern Ireland, parents should be provided a money back guarantee that results be achieved and those results should be specifically outlined and measurable. I would very much like to know from families what promises you were made from ABA providers, if any, what results were achieved and what targets your child met or did not meet, in their learning. I am not anti - ABA but I am anti rip off. If I buy something I want something more than just a vague promise and I certainly do not want lame excuses for when it all goes 'wrong'. One commenter to my blog stated that her child's autism was blamed when it turned out her child did not achieve much success in his ABA program. The ABA company said that the child was 'more autistic than they thought'. This is a get-out clause and if ABA companies wish to rely on such ridiculous excuses, they need to put it in writing from the beginning, so parents know what they are buying into.
YOU SAID: -
"Very interesting blog indeed. My family have recently had a very short relationship with XXX. We are a family with a very low income and live in a terraced housing executive house on an estate. It seems that unless you are willing to pay ridiculous amounts of money and a lot of which does not directly involve treatment/therapy, they are not happy to help your child after all. An hourly rate of £38.50 per hour for consultants on a 3 hourly weekly visit turns into £66 per hour for a consultants visit 3 hourly on a fortnightly basis. Mileage to and from your home is charged...... XXX seem to act nearly as an agent for therapists (who differ from consultants) ...I really wish that there were some kind of regulatory body for this because as a parent of a child with severe autism I am devastated that XXX were extremely reluctant to tailor a programme to the needs of my family as it went outside their 'fair and balanced models and costs'. Parents who decide to challenge these costs with XXX can expect to be labelled as abusive and slanderous and an insult to other families, their children and their choices. To quote XXX in relation to our package ..... "We are not a money making scheme, neither do we take advantage of anyone, we provide quality services and we need to ensure that our Consultants have a salary, surely you can appreciate that." XXX went on to say, " To continue to receive our services it will be necessary for you to have a 3 hour initial presentation rate". "
The government need to sit up and take notice. In the long run any expense faced by providing ABA to our children be it in schools or home based would pay off as this would provide them with necessary tools and skills to live a potentially 'normal life' thus reducing costs of care etc in adulthood. "
"Your post is spot on. There seems to be a very dark side of autism and it also seems to involve or attract unscrupulous people making money from the families of disabled children. Why is something as simple as the APPLICATION OF BEHAVIOUR ANALYSIS so expensive? I don't have a child with autism myself but I have two nephews with autism. What I also have is a fair bit of knowledge about behaviour having had 4 children of my own. Leave these shysters to themselves. Any parent can learn how to change and shape their childrens behaviour /and their own. They don't need a high priced pseudo science peddlar/consultant to teach them. I am torn between laughing and crying after I read this. Parents can be gullible when it comes to their own kids, but ABA program directors should be ashamed of themselves. Meanwhile the governmnent just stands back and laughs while it repeats its mantra that autism is genetic. Its a comic tragedy all rolled into one. "
By Stringvest on ABA in Northern Ireland - Got Money? Got ABA! on 03/06/2011
Wednesday, 13 July 2011
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