Tag Archives: Autism

Autism Self Advocates For ABA

Most behaviour analysts do not use testimonials.  In part, this is because our ethical code prohibits the solicitation of testimonials from clients, but largely it is because behaviour analysts believe that decisions about the selection of interventions should be based on experimental evidence rather than testimonials or anecdotes.

While an anecdote about a clinical outcome might encourage a behaviour analyst to research a particular method,  he or she will not rely on this information alone to make a decision about the appropriateness of a proposed intervention. Ultimately, a behaviour analyst’s decision must be based on the empirical record. if you ask a service provider to provide evidence for their claims and all they can offer you are testimonials and anecdotes, then their claims are probably pseudoscientific.

anecdotal
Unfortunately,  one of the side effects of behaviour analysts’ commitment to making evidence based decisions is that we sometimes underestimate the power of testimonials to influence people.  Allegations of unethical conduct by behaviour analysts can take on a life of their own when published online.   Misrepresentations of ABA treatments for children with autism are shared and repeated and unfortunately there are pockets of the autism self advocacy community  where it is believed that :

ABA teaches that the use of adversives, compliance training, and the devastation of self-determination are all means worth the end achievement

Sometimes, the above view is presented as the consensus view within the autism self advocacy community.  For the parent of a young child with autism or a person with autism who was considering using behaviour analytic services, this might seem like a good reason to avoid ABA. Fortunately, there are a growing number of examples of individuals with autism who champion ABA.   Five of these individuals’ videos are shared below.

Temple Grandin is one of the world’s most famous individuals with autism.  She has a positive view of ABA – especially  what she terms the more “flexible” forms of ABA. Temple feels that the techniques she experienced as a child were similar to ABA and notes that the ABA intervention you use with a child who has severe autism should not be the same as the interventions that are appropriate for more able learners and vice versa.

The young man in the above video is Alex Lowry. He has autism and as part of a review of the BBC documentary Challenging Behaviour, he offers his views of ABA based on the interventions he received as a child.  He reveals that he thinks that many people online are “bashing” without knowing anything about ABA.  He says that he feels that he is better off for having received ABA and that his therapists used his interests and fun things to help him learn.  He believes that ABA is not “getting rid” of autism and that he still has an autistic mind but that he has learned a lot of skills.

Kayla is a 12 year old girl with autism.  When describing her experiences of ABA she says “Over time, I learned to play with toys, do puzzles, play with dolls and have fun at the park climbing and swinging”.  She recalls learning to ask for music using a card with a music symbol by practicing “over and over again” and learning to tolerate having her hair brushed.   Kayla also shares experience of having meltdowns and the ways in which she has learned to become more independent.

At the five minute mark in the above video, we are introduced to Cillian who is a 13 year old young man with autism.   Cillian tells us that when he was 3,  experts told his parents that he would not learn to “talk properly” or go to an “ordinary school”.  By learning through ABA, he has proven them wrong and has been attending mainstream school since he was 4. He tells us about how his parents were told that ABA does not work and that it was cruel.  He points out that, unlike him,  the experts providing that advice did not have  first hand experience of ABA.  He found is ABA programmes to be “fun” and enjoyed learning new things.  He believes that ABA helped him to realise that it is “okay to be different”.

Eli is a 20 year old man with autism who started ABA when he was three.  He is now studying to become a behaviour analyst. Eli says that ABA was the only intervention that helped him to learn the skills he was lacking.  He also remembers having “fun” as part of his ABA programmes. He emphasises the importance of individualisation and building rapport.  Later, he cautions against the use of discrete trial training on its own as he believes that it is important to also have sessions where the learner leads and the therapist uses natural environment teaching.

Eli would recommend ABA to any parent of a child with autism because he has seen what it can do.  He believes that withou ABA he would not talk and would be living in a home.

It is important to remember that every person who has a diagnosis of autism is an individual and no single viewpoint can be said to represent all members of the autism self advocacy community.  While it is hoped that readers will enjoy the above videos,  it is important to remember that anecdotes and testimonials – even those supportive of ABA – are no substitute for empircal evidence.  For all of the latest research on the subject of autism and autism interventions, an excellent resource is the Association for Autism Treatment’s website.

ABA in the Republic of Ireland: New Ministers, New Policies?

Niall Conlon

Leinster House

The Dáil resumed last week and with two new Ministers in the Health and Education portfolios, many would argue that there is an opportunity for reform of the government’s policy on autism. While Ireland once had one of the more progressive approaches to ABA in Europe, in recent times there has been a serious regression.  As ABA becomes more available in the USA through the medical insurance system, it has become progressively more difficult for Irish parents of children with autism to source the same service.

health-insurance-autism

American Behaviour Analysts are sometimes surprised to find that ABA is considered an educational intervention in Ireland. It seems counterintuitive that what is regarded as a medical intervention in one jurisdiction is regarded as educational in another. When questioned about the difference between the way ABA is treated in the US and Ireland, Reilly insisted that ABA was:

one of a number of approaches that are used, predominantly in educational settings, when working with children with autism spectrum disorders

He insisted that ABA was :

not considered a medical treatment in Ireland and there are no plans to modify this position.

"Trust me. I'm a Doctor!"

“Trust me. I’m a Doctor!”

This position seems strange. After all, the use of the “eclectic” approach to autism intervention is mandatory in Irish schools. It cannot be Ireland that the Minister was talking about when he said ABA was predominantly for use in educational setting. Since ABA is recognised as a medical intervention in many parts of the USA, it seems unlikely he was referring to that location.  So where was he referring to?

Eclectic for All

Eclectic for All

On a different note, agencies of the Health Service Executive use health funding to provide Positive Behaviour Support (PBS) to many individuals with intellectual disabilities throughout Ireland. Psychologists who use behavioural therapies are routinely employed in positions funded through the department of health. It seems likely that more Irish behaviour analysts are employed through health funding than through education funding. This also undermines Reilly’s argument.

The Quiet Man

The Quiet Man

Reilly will be replaced by Leo Varadakar. Like Reilly, Varadakar was a part of the group that put forward the FG motion to make ABA available to those with autism in 2008. He has not said much since then, but it is worth noting that most of his colleagues seem to have abandoned their pro-ABA positions since the night of the motion. A deviation from Reilly’s position seems unlikely.

A similar pattern of U-turns emerges when you look at Labour and the Education portfolio.

"One has to see ABA in practice to believe it"

“One has to see ABA in practice to believe it”

Jan O’Sullivan has taken up the office of Minister for Education and Skills. This has been welcomed by some ABA advocates in Ireland as in previous years, she demonstrated a strong interest in ABA with particular regard to the Bluebells ABA school in her Limerick constituency. The school closed several years ago as a result of policy changes implemented by her current department.

Reflecting on her experiences of the ABA education provided in Bluebells, the Minister stated:

It is clear that the children are benefiting from the environment and methods suited to their specific needs. From observing them and seeing how they interact with those with whom they deal at Bluebell, I have no doubt that those children would not be able to adapt to the traditional school classroom at this stage in their development. They do not have the skills to survive in a normal classroom.

During a Dáil debate on autism services, she spoke about her impressions of ABA to her predecessor Mary Hanafin:

I do not cast aspersions on the Minister but one has to see ABA in practice to believe it, as I did when I visited the Bluebell school in Limerick city. I accept other methods are available to teach autistic children and the ABA method does not work for all of them but it suits a percentage of children.

In the long term, these ABA schools will save the State money because approximately 40% of the children who pass through them can enter mainstream schools after a few years of education through the ABA method. One child who attended the Bluebell school in Limerick will enter a mainstream school in September.  The child will receive support mfor the first few months but will be then fully integrated into the school population. ABA is a scientifically based system that has proven its worth. As Deputy O’Rourke stated, it helps children to deal with the world around them because they cannot relate to the world in the way most other children do. They learn the behaviour that will allow them to sit in a normal classroom.. I have seen children who were taken out of mainstream schools and put into an ABA school before returning to the mainstream school with the behaviour totally changed.

While behaviour analysts might quibble with some details of the above statements, it is clear that in 2007, Jan O’Sullivan was positively predisposed toward ABA, accepted that it would save the State money in the long term and  she also has a history of campaigning with parents to provide ABA schooling for her constituents. Given that the evidence supporting ABA has multiplied since 2007, surely we can expect Minister O’Sullivan to rectify the mistakes of previous years?

Behaviour Analysis Believe

History would suggest this is not a safe bet.

Jan O’Sullivan is replacing Ruairi Quinn. Some people felt optimistic when Quinn became Minister. Like O’Sullivan, he had a history of making statements indicative of a positive predisposition toward ABA. While O’Sullivan had campaigned for the Bluebells school, Quinn had supported the ABACAS ABA schools. As late as 2008, Minister Quinn was railing against Minister Hanafin’s “one size fits all” policy;

The Department of Education and Sciences refusal to recognise the merit of the ABA method has more to do with institutional rigidities and conservatism within the civil service than a real honest and open evaluation of the effectiveness of the ABA method. It is recognised by many specialists in this area that every child is different and that ‘a one size fits all’ will not work.

There needs to be an array of different methods that can be applied by parents, teachers and schools, including the ABA method. The rigidity of the Department of Education and Science relates to the definition of a Primary School Teacher and the requirement that all Primary School Teachers would have a qualification in honours Irish. This simply does not make sense in the context of a trained professional with a third level qualification but not that of a Primary School Teacher who is engaged in utilisation of the ABA method.

A Flip-flop

A Flip-flop


He continued to highlight barriers related to the provision of ABA for children with autism up until 2010, however by the time he became Minister in 2011, his stance had changed entirely. He went from criticising Minister Hanafin’s policy to parroting it with parts of his written replies to questions including chunks that appear to have been copied and pasted from old replies made by his predecessor.

Ruairi Quinn

Ruairi Quinn

Quinn had particular difficulties identifying his department’s policy on educating individuals with autism. It was a question that came up frequently in Dail questions. When asked for his Department’s policy on autism education during the early part of his time in the DES, Quinn initially refused to provide one. He explained that:

Policy can be expressed and manifested through a variety of forms. Explicitly, it is communicated via legislation, regulations, rulings, orders, plans strategies, policy statements and other forms – or through of a combination of these.

When asked to provide a list of these documents in whatever form they took, the Minister and his department refused to do so. It seems like the Minister wanted parents and teachers to examine court rulings, Dail debates, legislation and non-ASD policy documents in order to figure out what his department’s  policy was.  It was behaviour more becoming of a Batman villain than a Minister and the reply reflected where young people with autism stood in the eyes of  the Department of Education and Skills.  One cannot imagine any Minister for Education directing parents and teachers toward “rulings”, “orders” and “regulations” if they had asked for something like the DES policy on literacy for neurotypical students.

Unfortunately for Quinn, in 2012,  the Children’s Ombudsman ruled against his refusal to provide a policy document. Emily Logan asked that such a document be provided promptly and by March 2013, Minister Quinn conceded that “greater clarity” would be useful and confirmed that his department was working on a policy document.  At some point later that year, Minister Quinn changed his mind and decided that “greater clarity” would not be helpful.

In April 2014, he claimed that the NCSE would instead make an informational pamphlet for parents of children with ASD and that the Ombudsman’s Office was supportive of this alternative. It later transpired that the Ombudsman’s Office took exception to this claim. They did not support Quinn’s refusal to publish an ASD policy document and remain unhappy.  When the informational pamphlet was published, it included a single paragraph on the subject of DES policy:

The Department’s policy is focused on ensuring that all children, including those with autism spectrum disorders, can have access to an education appropriate to meeting their needs and abilities. The policy is to provide for children with special educational needs, including autism, to be included in mainstream schools unless such a placement would not be in their best interests or the interests of the children with whom they are to be educated. Some children with more complex special educational needs may be supported in a special class in a mainstream school. These children have the option, where appropriate, of full or part-time inclusion and interaction with other children. Other children may have such complex needs that they are best placed in a special school.

The above “policy” makes no reference to educational intervention types, qualifications, training or other important matters. It was a statement of a placement policy rather than an education policy. For a man who appeared to ne set against “institution rigidities” and “conservatism” with regard to his predecessors’ policy, Quinn was remarkably comfortable implementing it while in power.

The pattern of Ministers suddenly and dramatically changing their position when they enter the Department of Education and Skills has not gone un-noticed. In March 2013, during Autism Bill debate, Simon Harris TD noted that

We must examine the issue of ABA and I feel quite strongly about this. My party and the other party in government have very strong views on ABA. I do not wish to speak for anyone else but other parties in opposition also have very strong views on ABA. However, it seems that whoever is appointed the Minister for Education and Skills, regardless of party affiliation and what Government he or she is in, he or she goes into the Department and comes out with a different view on ABA. This simply cannot be the case. We cannot know ABA works one day and then become the Minister and all of a sudden have a problem with ABA.  We must have a serious conversation about ABA and the contribution it has to play.

Unfortunately, Harris’ call for a “serious conversation” has largely gone unheeded.  When questioned about the inappropriateness of the current autism policy and his Department’s failure to heed the advice of experts and its own agencies, Minister Quinn avoided answering questions wherever and however possible. He would typically point to the fact that the NCSE had commissioned research and that this would be delivered along with policy advice in 2015.

Fleeting Motivation

With 2015 rapidly approach, O’Sullivan will not have that option for very long before she will come under pressure to change the DES’ antiquated approach to autism education in the light of the latest research.  The pressure that the DES has come under in recent years has not been insignificant.  It has faced criticism from a variety of parents, professional organisations, academics and opposition politicians.  Many of these individuals and groups have contributed to the NCSE autism policy consultation process. With 2015 shaping up to mark beginning of the 2016 election campaign, the coming Dáil term could yet prove to be one of the best opportunities in several years to reform the Irish government’s flawed autism policy so that it becomes child-centred not just in name, but in nature.  If ABA advocates are serious about improving the prospects of children with autism in Ireland, we are going to have a find a way to translate politicians’ statements of support while in opposition into substantial policies while in government.

 While ABA Ireland has taken all reasonable steps to ensure the accuracy of the contents of this blog, it accepts no liability for the accuracy or quality of the information provided and no liability for this information being up-to-date or complete. Information is provided for educational and general purposes only and is not intended as a substitute for professional advice. Where ABA Ireland provides links to third-party websites, it accepts no liability for the content of these websites. The views of authors are their own and do not necessarily reflect the views of ABA Ireland or any organisations associated with the authors of posts.

ABA Ireland Top 5 Posts 17/08/2014

Every week on our Facebook Page, members post dozens of post on topics related to Behaviour Analysis, its applications and related issues. One purpose of this blog is to highlight some of the most “liked” and useful posts in order to make them available to a wider audience.

5. Introduction to RFT

Foxy Learning’s online tutorial on Relational Frame Theory is now 10 years old.   In those ten years, over 15,000 people have accessed the free tutorial to learn more about RFT and its applications.  If you have an interest in this area of behaviour analysis, it is well worth a visit.

Foxy RFT

4. Grace App Research Opportunities

Lisa Domican – creator of the Grace App – has kindly offered to provide ABA students with “free training, free codes for download and where needed a loan device” if they are interested in carrying out research into the App’s effectiveness.  Many app designers make unsubstantiated claims about the effectiveness of their products so it is great to see Lisa working with behaviour analysts to demonstrate the app’s benefits for people with communication difficulties. Hopefully, other designers will follow her example.

Grace Ap

3. Cookie Kid

One again, Behaviour Man has provided us with another ABA based Meme featuring a skeptical toddler coming to terms with the benefits of the differential reinforcement of alternative behaviours.

Cookie Kid

 

2.  Supernanny (and Lynn Koegel) tackle Autism

Lots of ABA Ireland members liked this online video of an episode of Supernanny in which Supernanny enlists the help of the well respected behaviour analyst Lynn Koegel to help a child with autism learn to communicate and manage his emotions better.


 

1. Sunday Express  – How a controversial therapy has changed my autistic daughter’s life

The final post that we’ll feature this week is an article from the UK based Sunday Express newspaper. An unfortunate headline aside, the article offers an excellent description of the benefits of ABA for children with autism.
Tracey Holliday and Freya

Contributors to the article include Tracey Halliday, Jane McCready (of ABA4all )and Dr Francesca degli Espinosa.  Autism parents and professionals in the UK are doing a great job of highlighting issues facing those who need access to ABA and addressing some of the misconceptions around the science. If you haven’t already liked the ABA4all page on Facebook, we recommend you do.

 

That’s all for this week.

All comments welcome.

While ABA Ireland has taken all reasonable steps to ensure the accuracy of the contents of this blog, it accepts no liability for the accuracy or quality of the information provided and no liability for this information being up-to-date or complete. Information is provided for educational and general purposes only and is not intended as a substitute for professional advice. Where ABA Ireland provides links to third-party websites, it accepts no liability for the content of these websites. The views of authors are their own and do not necessarily reflect the views of ABA Ireland or any organisations associated with the authors of posts.