I have heard on the grapevine and also from commenters to this blog that the Northern Ireland based ABA company CEAT (Centre for Early Autism Treatment) located in Belfast will be considering departing soon from Northern Ireland (or rather the proprietors of CEAT are leaving, i.e. Mary Hopton Smith and Kimberly Wroblewski.)
Apparently, they are both moving to Wisconsin USA. It has been intimated to me that the company will remain in existence and managed by others who will be staying here. There is room in Northern Ireland for many ABA providers, and I hope that we will see professional consultants find their way to the province soon.
For all those parents, however, who complained to this blog, so vociferously in the past about CEAT, their prices, their 'attitude', their lack of efficacy and the rest - can I make a suggestion to you all? Don't moan to me - let your feet do the talking - the next time any sort of organisation that purports to be helping your child comes around, don't believe what they say but rather ask for a money back guarantee and do your own research about who they are, what they are and whether or not you even need them. Using an ABA provider usually involves a financial transaction and buying ABA should at least involve the same precautions that you would take when buying a pair of shoes - you have to ask yourself can you really afford them, can you get them cheaper elsewhere,do they fit, will they last, can you return them if they fall apart and is there an extended guarantee?
In general where ABA is concerned don't be 'blinded' by what someone else attributes to 'science' or taken in by a sweet talking autism 'know it all'. Case in point are the classroom aides, teachers, educational psychologists, speech therapists and OT's who think they know more than you do and can help your child even better than you can. ABA is only as good as your provider (or you) make it. I don't know what it is about autism but as parents we sometimes continue to believe anyone who promises us 'hope' for our child. Why is it that our 'hope' for our kids often has to emanate from others first? Why isn't our hope and aspiration for our kids built-in, and rock solid? Why do we look to others to give us hope and end up paying through the nose for the pleasure?
I hope that very soon ABA will be a household word in the autism community and I do hope that it will be readily available and fully accepted as a practical, effective, reasonably priced and common treatment for autism, one that will be provided to every family for free.
In the meantime, however, your child's future lies with you, it's you that has to do the day to day work on the ground, on your knees with your child, not a highly paid autism consultant. Any ABA consultant worth their salt will ensure that you are trained and experienced in carrying out the ABA program. Your parental role can never be substituted by a paid ABA consultant or 'therapist'. Your child's learning mostly takes place in the home with you and the rest of your family. Any parent can be trained how to develop, and use an ABA program in the home and this is the most important thing that any ABA consultant can and should do for you. If they don't, there are serious questions to ask.
I have said before that ABA is not rocket science. It also should not cost a 2nd mortgage. Before you sign a contract with an ABA provider, and before you sign a cheque, demand to know that the ABA provider has a successful track record, that they are going to train you and your family in using the program, that they will take the time to know your child's needs, personality and also the needs of your family. When it comes to ABA there are fully qualified ABA therapists and consultant level providers all over Northern Ireland and in the south of Ireland.
To parents - contact the ABA charity PEAT which is located in Northern Ireland. PEAT consists of parents who are using ABA and have learned how to use it with their children. Ask them for help. Don't put up with shoddy services or useless 'support' groups that promise visual schedules will 'help' or cure your child's autism - stand up for yourselves and demand what you want. If you don't know what you want, figure it out. If you can't get it, create it yourself. If you don't, you may be taken advantage of, not just regarding ABA but anything classed as a 'treatment' for autism.
If you want to pay £400-500 per day for an ABA consultation that's your business but know that you don't have to. ABA is as much about good parenting as it is about the science of behaviour and you can learn it. ABA is there for anyone to learn. In fact, if you want to learn it, there are many parents out there who can teach you - have you asked around to find out who those parents might be? Contact PEAT (http://www.peatni.org/). Personally, I like this organisation, it's run by and for parents and they don't cost the earth.
No one should have to pay £20,000 - 30,000 or even 40,000 per year for an ABA program. We all pay into a universal health service so that we can dip into it when we most need it. Currently in the UK that is our right. ABA, if it has efficacy, should be on the menu so to speak, for your child, my child and all children with autism for free.
To all the parents out there paying exorbitant costs to run ABA programs, will you want to run similarly expensive programs for your future children who might have autism? Do you want your nieces and nephews, friends and colleagues to have to pay the kind of price you are paying now?
If we start thinking in Northern Ireland about ALL the children who have autism and what is best for them, and not just our own children with their own personal and privately paid for ABA programs, perhaps we would be a lot better off. If you who have private ABA programs think ABA is so wonderful why do you keep it to yourselves? Would you be willing to share your time to lobby the government so that a child whose parents couldn't possibly afford it, gets it? Or is it just about you and your child? As long as ABA remains in the private sector (because you continue to privately pay for it) how will it ever enter the public arena? Does your private provider do any lobbying? Have they put together a fund to help less fortunate families? Do they avail of the substantial subsidies that are available UK wide to help families?
On that note the Caudwell Children's Trust in England is now funding ABA in Northern Ireland and I suggest that parents contact them to enquire how they can avail of the funding.
Isn't this a case where thinking about someone else's child and demanding that someone elses' child gets effective autism treatment (just like you are paying for now) might actually benefit your child and others, in the long run? What is it like for other families who cannot afford ABA to listen to an 'ABA family' wax lyrical about their Mercedes whilst that family will never even obtain a driver's licence? This is not an attack on those who can afford to pay for private ABA. Parents do what they can to help their children. Parents, however, who 2nd mortgage their homes, borrow from family members, climb Kiliminjaro, etc to raise funds should not have to. If ABA is so wonderful, it should be funded by the state.
Where ABA is concerned, money talks. For those who say different, you are fooling yourselves. What do we need to do in Northern Ireland to ensure that all families who want ABA get it and that they receive it for free?