Ireland Abandons Best Help for Autistic Children: Education Department Plans to Drop Evidence Based ABA for Autistic Children

Like many members of the Irish Diaspora, a Doherty of the Great Clann O'Dochartaigh , (1),(2),(3),  I enjoy reading about Irish society and history and reveling in the Irish  music, the literature and the small pleasures of St. Patrick's Day. 

I am sadly disappointed though to read that the Irish Department of Education is planning to drop evidence based,  effective  ABA treatment for autistic children in favor or an unproven, non evidence based "eclectic:" approach as detailed in the Irish Times article Best practice autism treatment 'will vanish' under proposals:

"ABA uses behavioural science to assess and treat a broad range of behaviours in individuals diagnosed with intellectual and developmental disabilities. Many academics and support groups say it is a highly effective intervention which has produced dramatic results among children with autism.

However, the Government favours an “eclectic” approach, which it says is based on a wide range of educational approaches, including ABA, a picture exchange communication system, social stories and developmentally based approaches.

In a statement yesterday, the Psychological Society of Ireland’s division on behaviour analysis said that under the department’s proposals ABA schools would simply resemble “eclectic” special schools across the State.

Among the members of the division’s committee are Prof Julian Leslie of the University of Ulster, Dr Olive Healy of NUI Galway, Dr Geraldine Leader of NUI Galway, Dr Maeve Bracken of Trinity College Dublin, as well as Michelle Kelly and Niamh McEvoy of NUI Galway.

The division says research shows that children exposed to the “eclectic” approach do not achieve the same level of gains as children who receive full-time tuition based on the science of ABA.

In addition, it said the department had not produced any research to show the superiority of the “eclectic” approach over ABA."

ABA is the most solidly backed intervention for autistic children, call it a health or education intervention as you prefer. But it is the one intervention with solid evidence in support of its effectiveness. I fully support the rights of families to seek out other interventions and treatments for their children and if they are shown to be working with their child to continue to do so.  I do not support public health or education authorities planning to abandon the most proven method of helping autistic children in favor of approaches with no evidence base.  "Eclectic" is a buzz word and nothing more than that.

Shame on you Ireland. Shame on you.

Grim, Chaotic Autism Reality In Ireland

The Independent paints a grim picture of autism reality in Ireland in Autism 'chaos' as one-third wait over year for diagnosis and in an editorial Grim message on autism . Figures released by Irish health authorities show that in one county there are no waiting lists while in others there are 14 months to 3 year delays in receiving diagnosis. For many Irish autistic children the early period when intervention is most effective expires on the waiting list for diagnosis.

The waiting list tragedy is not unique to autistic children in Ireland. Here in Canada there are huge discrepancies between provinces with respect to autism services. Ontario is notorious for its waiting lists for receipt of autism treatment with children left "rotting on the vine". In its editorial the Independent noted that in Ireland:

"following the release of a damning report, the Government was warned that inaction in the welfare of children will lead to a litany of social ills, including an increase in suicide and self-mutilation and family breakdown, which will cost the State dearly in the not too distant future."

So too in Canada our governments, federal and provincial, have been warned by the Senate Committee report "Pay Now or Pay Later" what the future would hold if action were not taken to provide funding and a national autism strategy to ensure that autistic children received the treatment they need. In Canada a cynical Stephen Harper led Conservative party uses pre-WWII views of Canadian federalism to justify its lack of commitment to helping autistic children across Canada.

autism

In Ireland Fine Gael Fights for ABA for Autistic Children

Like many North Americans of Irish heritage I watch events in Ireland with enhanced interest. It is not just another country. Excessive romanticism or not, Ireland is where we are from. Ireland, even generations removed, is in our genes and, as everyone following the explosive development of genetic research into autism disorders is aware, genes matter. Following is a press release from Fine Gael detailing the FG effort to improve services, particularly ABA services, for autistic children in Ireland.

10
Feb 2008

FF Govt's Grossly Misguided Autism Policy To Be Overhauled by FG Motion

Fine Gael National Press Office Press Release

Fine Gael National Press Office Press Statement _________________________________________________________________ Leinster House Contact Brian Hayes TD Dublin 2 Ciarán Conlon Education & Science Ireland 086 2391947 Sunday February 10th 2008 FF Govt's Grossly Misguided Autism Policy To Be Overhauled by FG Motion In light of the Seán O'Cuanacháin case and the callous disregard with which the Fianna Fáil Government and the Minister for Education have treated parents of children with autism, Fine Gael will this week put forward a Private Members' Motion that will overhaul how children with autism are treated. Fine Gael Education Spokesman, Brian Hayes TD, said today (Sunday) that the comprehensive motion will demand that the Government commit to funding the existing 12 ABA centres, expand the ABA scheme, institute an appeals system and make specific education services available to autistic children where it has been recommended by psychologists. "As the last week has shown, under Fianna Fáil, when it comes to children with autism, the State seems more concerned with dragging parents through the courts rather than providing for their child's educational needs. "In fact, the Education Minister's record in this area is so poor that the author of a Government taskforce report on autism described the Government's policies as 'grossly misguided'. "For too long, the needs of children with autism have been shamefully overlooked and that is why, this week, Fine Gael will use our Private Members' Time to present a motion that will overhaul the entire sector. There is no greater example of this disregard for the needs of children with autism than the baffling neglect by the FF Government of Applied Behavioural Analysis (ABA). The Minister for Education has refused to extend ABA beyond the 12 pilot centres that have already been established but the Fine Gael Motion will reverse this policy as well as ensuring that the existing centres are funded in the current format for the long term. "There is no appeals mechanism currently in place leaving parents who look for justice for their child with no option but to go to courts. Fine Gael wants to see an appeals process set up without delay as well as implementing the outstanding provisions of the EPSEN Act and ensuring Speech and Language Therapy and Behavioural Therapy is made available to all schools with autistic children in attendance. "So far, parents of children with autism have come up against a brick wall when trying to get the State to provide for the educational needs of their children. The Government now has an opportunity to change that and I urge each and every Government Deputy to vote for the Fine Gael Motion. It is the least these children deserve." Ends Note: Fine Gael Private Members Motion follows: That Dáil Éireann; - Accepting that the current system of assessment for children with autism is inadequate - Noting the co-author of the report of the Government Taskforce on Autism has suggested the Department of Education's policy on education for autistic children is misguided - Considering that the lack of a suitable appeals process leaves parents with no option other than to pursue education services for their children through the courts - Acknowledging the Government's delay in implementing the EPSEN Act 2004 to provide appropriate education services for children with special needs - Noting the Government's refusal to change its policy to consider funding for new ABA centres despite a clear demand for ABA services countrywide - Considering the Government's failure to improve coordination between education and health services in supporting children with special needs despite promises in the Programme for Government 2007 to do so Calls on the Government to; - Lay any evidence before the House which supports the suggestion that the current system of education provision for autistic children is suitable for all children, even those with moderate to severe autism who have been recommended one-to-one tuition - Make specific education services available to autistic children where it has been recommended by psychologists, without delay - Introduce the outstanding provisions of the EPSEN Act 2004 according to the NCSE's proposed timescale for implementation - Commit to funding the existing 12 ABA centres in their current format - Expand the current ABA pilot scheme of 12 centres to accommodate other projects of a similar nature where they are needed - Recognise the qualifications of psychologists currently working in ABA centres - Honour its Programme for Government commitment and institute an appeals system without further delay - Ensure Speech and Language Therapy and Behavioural Therapy is made available to all schools with autistic children in attendance - Immediately move to enhance cooperation between the Department of Education and Health to ensure children with special needs receive adequate support in all aspects of their lives from an early age

autism

Autism & ABA in Ireland - "It's Like A Cloud Has Been Lifted"

“It's like a cloud has been lifted. The programme of ABA is tailored to Robyn's needs. She is walking a little now. She still doesn't talk, but she communicates through pictures. She shows us what she wants by pointing to photos of food or toys. Robyn now shows affection too. She connects with us, and has started kissing us. That is real progress.”

- Trevor Dagg, Independent, June 20 2007

Autism and ABA. The story is the same whether it is from Australia, Canada, the US, the UK, or Ireland. Spotty services. Fierce government resistance to helping autistic children and adults. Educators, who are not educated about autism and the learning methods appropriate for autistic children. Ignorance of ABA and its effectiveness in treating and educating autistic children. The story from the Independent (Ireland) which follow summarizes the spotty situation in Ireland but also shows the success that can be realized through ABA.


"Despite a lack of state help, many childhood stories of autism are of success. With the right support children can learn to interact and communicate and grow, something their parents feared they may never do

AUTISM has been in the news lately. The government fought the parents of six-year-old Sean O Cuanacháin in the High Court, arguing that they were not obliged to provide Applied Behavioural Analysis (ABA) for Sean.

The parents lost their case.

There are between 1,200 and 2,000 autism sufferers in Ireland, according to the Irish Society For Autism, and the number is increasing all the time.

“Research in the US has shown that autism levels have risen, from four cases in every 10,000 children to an alarming 30 to 60 per 10,000 children,” says Kathy Sinnott. “That would officially classify it as an epidemic.”

Autism, though, is difficult to diagnose. It's a complex condition covering a huge spectrum of behviours. Sufferers seem to be in a world of their own.

They do not interact well, they don't play with others and they have problems with speech.

People with autism fear change, and may have no sense of danger. They hate p hysical contact and they resist learning.

Early intervention for autism is vital – and therein lies the problem, because in some areas of Ireland, services are virtually non-existent.

“Children with autism need special education, as well as medical and dietary help,” says Kathy Sinnott.

Robyn Dagg, now four-and-a-half, was a normal baby who met all her milestones. But when she was 18 months, her parents, Tre vor and Julie, began to worry that Robyn was neither talking nor walking.

They took her to the Central Remedial Clinic in Clontarf, which ran a series of tests. Autism was suspected. When the couple took Robyn, then aged two, to Professor Fitzgerald, a renowned psychologist, he confirmed their worst fears.

“He said Robyn was on the autistic sphere and he gave us the report we needed to seek HSE funding,” says Trevor. “We were obviously devastated. We were trying to understand what we were dealing with. We needed someone to put their arm round our shoulders and say, ‘everything is going to be all right.'

“But we met with mass confusion. We didn't know where to go or who to talk to. We wanted a local service, and we had to do a lot of ringing around. Our lives were turned upside down.

“At two-and-a-half, Robyn had no communication at all. She was totally frustrated, and would be upset and screaming a lot of the time. Our son, Harry, was born around that time. We were worried if he would be OK.”

In September 2005, Robyn was accepted at St Catherine's, in Newcastle, Co Wicklow. She began a part-time programme at Barnacoyle, the pre-school for autism. Last September she was accepted on to the full-time programme, attending from 9am until 2.30pm each weekday.

“It's like a cloud has been lifted,” says Trevor. “The programme of ABA is tailored to Robyn's needs. She is walking a little now. She still doesn't talk, but she communicates through pictures. She shows us what she wants by pointing to photos of food or toys.

“Robyn now shows affection too. She connects with us, and has started kissing us. That is real progress.”

Barnacoyle, though, is the school offering ABA that was featured in the recent court case. The government, while happy to fund the 24 preschool age children, won't sanction them once they reach school age.

Yet many children with autism are not ready, at five, to move to mainstream school. According to Harry Cullen, acting CEO of St Catherine's, there are currently nine children at the school who do not receive H S E funding.

“And next September there will be another five,” says Cullen.

When 22-year-old Patrick Doyle from Knocknacarra, Co Galway, was diagnosed with autism, services were almost non-existent. Patrick has never received appropriate education and his parents, struggling to cope with his antisocial behaviour, have had no quality of life for years now.

Members of the Parents & Siblings Alliance, they have been lobbying the government to no avail.

“Patrick is in residential care for part of the time,” says his father, Gerry, “but they are short of staff there and he doesn't have any of the stimulating and physical activities that he so badly needs. He can be aggressive. We have no life.”

Mary and Eamon Bennett live in Tarmonbarry, Co Roscommon. It's one of the best areas for services and that's just as well because three of their four sons have autism.

“When we found out that Michael, now 15, had autism it was a huge shock,” says Mary. “Little was known about it back then. When the younger two, Eamon, now 12, and Peter, nine, were diagnosed with it too, it was unbelievable. thought, ‘was one not enough?’ ”

Michael is the most severe. He has no speech, and since having an epileptic fit last year, he is prone to rages.

“Michael and Eamon go to a special school in Castlerea. The staff there are brilliant. Eamon is doing really well. He is academically bright and is brilliant on the computer.”

As for Peter, thanks to early intervention he attends a national school and is doing really well.

Michael, Mary feels, will always need to go to a special centre. “He has a lot of behavioural problems but there is a good centre in Strokestown. He will be able to go there for activities during the day and come home at night. There are residential facilities there too.

“I can see Eamon working in an office, doing accounts perhaps, and I think Peter might be in a trade.”

Mary is full of praise for all the help and services she receives. The couple get a weekend a month of respite care, and an extra Saturday. “That's enough,” she says. “They are my children, so I have to look after them too.

“Last Sunday Peter made his First Communion. He sang at mass and he brought up the gifts with all the other children.

“Everybody who has been involved with helping Peter, from the days he received early intervention, were at the service. There wasn't a dry eye in the church. They all came back to the house and hugged us and him. It was wonderful,” she says.

ABA: what is it?

ABA is a system of autism . treatment based on behaviourist theories. Behaviours are taught through a system of rewards and consequences.

ABA breaks each learning task into several sub-tasks. To teach a child to write on paper, the child is first taught to pick up a pencil. Then the child locates the pointed end and learns to connect with the paper. The number of sub-tasks varies between children. The system looks at a child's behavioural pattern and works out a specific package to suit them. But the package will change. If successful, the child will need to move on to something else.

ABA is not a cure or a magic solution. There are no magic solutions for autism. But most children with it can be helped by ABA at some stage."


http://tinyurl.com/yt5tvb

Autism & ABA- Irish Education Minister Spins Old, Flawed Argument

Minister for Education & Science, Mary Hanafin T.D.

In reading news today from Ireland I had a strong sense of deja vu. Irish Education Minister Mary Hanafin persists in rejecting calls for ABA based education for Irish students with autism. Her argument? There are several suitable forms of education that are available in Ireland. The article does not provide any quotes or indications of what these several suitable forms might be and the Minister was criticized by a professional member of her own government's autism task force. In New Brunswick our Department of Education used similar arguments for several years to resist provision of ABA based education for autistic students for several years. ABA is heavily documented as an effective evidence based approach to educating students with autism. The mysterious "several suitable forms" other than ABA have yet to be documented.


The Minister for Education is coming under fire from a leading expert over her approach to dealing with autism.

Minister Mary Hanafin has repeatedly rejected calls from parents for the introduction of the expensive Applied Behavioural Analysis method for teaching autistic children.

Doctors say it is the most effective method, but Ms Hanafin is continuing to insist that there are several suitable forms of education that are available in Ireland.

Dr Rita Honan, a member of the department's own task force on autism, has now come out and said that the approach advocated by Ms Hanafin has no scientific basis and ABA has been proven to be more successful than any other teaching programme.

She also says the minister's stance makes no financial sense as the expensive ABA programme can lead to substantial savings in the long run.

http://www.belfasttelegraph.co.uk/breaking-news/ireland/article2528459.ece

Autism : Irish Protest Failure to Fund ABA Schools for Autistic Persons

New Brunswick and other Atlantic Provinces have strong historical ties to Ireland as many of our citizens arrived here escaping the destitution of mid-19th Century Ireland. Their descendants, including the occasional autism blogger, form a significant part of the local population today. We also have in common a reluctance on the part of government decision makers are to take the necessary action to provide needed ABA based educational instruction to autistic persons.

Autism protesters slam funding of specialist education

Several hundred parents and supporters have protested outside Leinster House over the Government's failure to properly fund applied behavioural analysis schools for autistic persons.

Three hundred and forty-seven black balloons, one for each child currently on waiting lists for ABA schools, were released into the air outside the main gates of Leinster House.

Irish Autism Action spokesperson, Mark De Silvo, said the Government is out of touch when it comes to education for those with autism.

http://tinyurl.com/33728l