Autism-Friendly Dublin

In The Politics of Autism, I discuss the need for more study of the issue in other countries.

 Emma Nevin at Dublin Live:

New plans to make Dublin the world's first autism friendly city with announced by Lord Mayor Daithi de Roiste today.

The Council is participating in the AsIAm Autism-Friendly Communities Awards Programme and will launch a three-year plan to make the capital an autism-friendly city in January. A steering group consisting of the Lord Mayor, elected officials, stakeholders, advocacy groups, those with lived experience, parents and academics and the group will carry out four public events between now and Christmas to establish this plan

The three-year plan will not only address physical infrastructure but also take into account education, healthcare, recreation and community support, all guided by input from Autistic people and their families and supported by key metrics. The city will also recruit Champion organisations, in the business, public and voluntary sectors, who will undertake training and commit to making small changes, such as implementing quiet times.

Irish Woman Nails Autism-Cure Scammer

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

John Hand at Irish Mirror:

A man has been arrested in the US after an Irish woman alerted police that he was making and selling a bogus Covid-19 treatment.

Activist Fiona O’Leary informed cops in Las Vegas, Nevada, who lifted Elias Daniel Beltran Suarez over his scam on Monday.

Officials said his product posed “significant risks to patient health” after uncovering his makeshift chemical lab to create his bleaching agent treatment.

He claimed it could cure autism, cancer and Covid-19.

He is now facing the charge of acting as a medical practitioner without a licence.

Glenn Puit at The Las Vegas Review-Journal:

Police said the Las Vegas investigation started when an online sleuth who described herself as “a campaigner against dangerous pseudoscience” came across Suarez on the online portal Telegram under a group user name Comusav.com. The woman identified herself to the Las Vegas Review-Journal on Tuesday as Fiona O’Leary of Cork, Ireland.

In a phone interview, O’Leary said she has three children who have autism, and she learned years ago that chlorine dioxide was being peddled by fake doctors and pseudo-scientists to desperate parents of autistic children. She referred to the sellers of chlorine dioxide as “bleachers” who engage in “dangerous quackery.”

“Someone reached out to me telling me they were giving bleach to autistic children,” O’Leary said. “I thought they were mad.”

O’Leary said chlorine dioxide also is sold as a cure for cancer. She said she works tirelessly to out those who sell chlorine dioxide and report them to law enforcement. She said the treatment is especially popular in Latin America.

Grandparents

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. 

Paula Prendeville and William Kinsella have an article in The Journal of Autism and Developmental Disorders titled "The Role of Grandparents in Supporting Families of Children with Autism Spectrum Disorders: A Family Systems Approach."

A family systems approach is required to identify the needs of families of children with autism. This paper explores how grandparents support children with autism and their parents using a family systems perspective. A thematic analysis of eighteen semi-structured interviews was conducted with participants from nine [Irish] families, capturing experiences of both parents’ and grandparents’. Themes identified were family recalibrating; strengthening the family system; and current needs and future concerns of grandparents. The views of families indicated the overwhelming need to acknowledge the grandparental role in supporting families that strengthen the family system by supporting the needs of a child with autism. Findings revealed that grandfathers have a calming role in these families where children have significant behavioural difficulties.

From the article:

Grandparents of children with ASD provide supports, not only to the children themselves, but also to their son or daughter whose child has autism. To reduce the burden families can experience, they would benefit from a family systems approach to empower grandparents to respond proactively to the needs of the family. It is incumbent upon professionals to devise supports to meet this need and to give recognition to grandparents of the valuable role they play. This research is a rallying call to professionals to consider the roles of grandparents more formally in their interactions with families of children with autism, and to identify supports to meet grandparents’ needs that ultimately improve the functioning of the family system

The Fall of Dr. Bradstreet

At The Washington Post, Michael E. Miller does a deep dive on the late Dr. Jeffrey Bradstreet. The moral is that although the Internet allows misinformation and dubious "cures" to spread worldwide, it also opens the way for worldwide pushback, too.

Fiona O’Leary is a far cry from a fearsome detective. She is a thin, pale Irish woman with dyed crimson hair and Asperger’s.

But she also has two sons with autism.

So like Bradstreet’s patients, O’Leary began scouring the Internet for ways to help her kids. Instead, she found GcMAF, which she calls a “dangerous and unethical scam.”

“GcMAF is another dangerous unauthorized, unproven and very expensive treatment being used in the Autism field,” O’Leary told The Post in an e-mail. She is the founder of Autistic Rights Together, an organization that exposes bogus autism magic bullets. “Those offering this treatment are untrained and not medical Doctors,” she said of GcMAF. (Bradstreet, it should be noted, was licensed to practice medicine in Georgia at the time of his death.)

O’Leary began investigating Bradstreet, Noakes, Immuno Biotech and their GcMAF solution, First Immune, in 2014. She began with First Immune’s headquarters in Guernsey, one of the Channel Islands.

Her complaints led regulators on the island to raise concerns in December with the Medicine and Healthcare Products Regulatory Agency (MHRA), the United Kingdom’s version of the FDA.

...
 But the GcMAF saga didn’t end there. O’Leary was hounding American officials as well. After spotting Bradstreet’s videos and blog posts mentioning his connections to Noakes and First Immune, O’Leary complained to the FDA about the American doctor.

Four months after First Immune was shut down, the feds came knocking on Bradstreet’s Buford, Ga., clinic.

"Refrigerator Mother" Theory in Ireland and France

The discredited "refrigerator mother" theory still lives in some parts of the world. Victoria White writes at The Irish Examiner:

IT’S nearly two weeks since psychologist Tony Humphreys sparked outraged by saying children on the autism spectrum were shutting down because of an "absence of expressed love" from their parents.

My first reaction was inarticulate rage. Yes, I have a child in the autism spectrum. Yes, I love him to bits. Yes, I show it.

However, as the rage dies, I realise that Humphreys’ blunder is a symptom of a much wider malaise: Traditional psychology is defending its territory.

For over a century, at least since Freud, the whole of Western society has become accustomed to seeing mental dysfunction as part of a story. Much like a detective novel, the story has at its core a terrible secret. You extract the secret and you have cured the patient.

... 

I was told: "Here we believe that every issue comes from inside the family." [emphasis added]

Remember that you were paying for all this: Two years of probing in the wrong place when an autism diagnosis should take a maximum of six months. 

Earlier this month, The Irish Examiner reported:

CLINICAL PSYCHOLOGIST Dr Tony Humphreys has reiterated controversial comments he made in an article published in the Irish Examiner last week linking parenting with the development of autism.

In the article, Humphreys suggested that a link lay between autism and parents not expressing love and affection to their young children. The article has been criticised by the Psychological Society of Ireland and Irish Autism Action, and it has since been removed from the Examiner site.

Speaking to RTÉ’s Claire Byrne on the Marian Finucane Show today, Humphreys said that children communicate all the time. If we respond to how children communicate and pick up what they’re trying to express, then they feel secure and continue to communicate, he said.

However, if we don’t, then children “wisely” shut down and stop communicating.

A few days after that, the Examiner reported:

 Health Minister James Reilly has described recent comments made by clinical psychologist Dr Tony Humphreys about autism as "utterly outrageous".

Dr Humphreys has been severely criticised for his article in the Irish Examiner which gave the impression parents were to blame for their child’s condition.

Speaking to TV3 yesterday, Dr Reilly, who has a 25-year-old autistic son, said the hurt caused by Dr Humphreys was "astonishing".

"Well, it was utterly outrageous. The hurt that he has caused people is absolutely astonishing. I heard him on the radio the other day and I thought he compounded it by saying ‘I thought this was a good news story that parents wouldn’t have to worry or feel guilty about passing on their bad genes to their children’.

"What? Another utter insult to parents and, you know, I’ll say this to parents, let no one set a limit on your child’s horizon. Experts will come and experts will go, but you know your child and you know what your child needs and you know the help they need and keep fighting. We’ll support them," Dr Reilly said

Meanwhile, Paul O'Donoghue writes in The Irish Times on the situation in France:

ON JANUARY 26th last, a court in the French town of Lille ordered that a documentary film be censored and removed from the internet.

The film, entitled The Wall, by Sophie Robert, critically examined the current dominant understanding and treatment of autism in France, which is founded on outdated and redundant theories of psychoanalysis.

Robert interviewed 27 psychoanalysts, three of whom later sued her, claiming they were misrepresented in the film. I have watched the documentary and so far as I can judge, the views of all of those interviewed are consistent with the psychoanalytic model that sees autism as being caused by a distorted relationship between the affected child and the mother. There is no objective evidence to support this viewpoint.

...

Ideologies can give rise to dire consequences and this is evident in the experiences of many French children with autism. In contrast to most other Western countries, it is claimed that up to 80 per cent of them do not attend school. In 2004 the Council of Europe condemned France for failing to provide appropriate education for children with autism.

Tough Times in the English-Speaking World

Fiscal constraints are affecting autism programs around the English-speaking world.

A case in Ireland, from the Irish Times:

THE LAST school in the State providing specialist Applied Behavioural Analysis (ABA) education to children with autism has closed, despite promises from Ministers Eamon Gilmore, Ruairí Quinn and James Reilly when in opposition that they would support ABA education.

The Achieve ABA school in Donaghmede, Dublin, which has been providing such education since 2006, closed yesterday as the parents of the eight children there could no longer afford to pay for it.

It has never received direct State funding. Up to now it has been funded in part with the home tuition grants, to which some of its pupils were entitled, and through fundraising. The grant is available to children with special needs between the ages of two and five years.

The funding shortfall had grown to €100,000 a year and, said Pat McCormack, parent of Méabh (5), “that is just not sustainable”.

The ABA method involves analysing the child’s skill levels and applying intensive one-to-one teaching which breaks down whole tasks into small, achievable steps. It applies particular methods to each child’s needs.

Though there were 13 such schools in the State, none was supported by the Department of Education, which says ABA is not “within the department’s policy parameters”.

All have now closed.

From the Waikato Times in New Zealand:

Parents of children with autism have been left angered and upset by the news Autism Waikato will close.

Six paid staff have been left without jobs, and more than 700 families no longer have the support network of the organisation.

Carolyn Jury, whose teenage son has Asperger's syndrome, was "disgusted" that the branch had to close due to a lack of funding.

...

Hamilton-based Labour MP Sue Moroney said funding for not-for-profit organisations had worsened since National made agencies reapply for funding each year through its community response fund.

"Autism NZ has successfully got money for that every year until this year because they have been told it's not regarded as a social service, it's more of a health service and it needs to be funded by a different budget."

BBC reports on a case from Wales:

A psychology professor has accused council officers of presenting inaccurate information to justify closing a unit for autistic children.

Council officers say the Westwood Primary School in Buckley, Flintshire, has not succeeded.

But Prof Richard Hastings says Bangor University research proves the claims inaccurate.

Opponents of closing the unit accused council officials of "unfounded claims, flawed evidence and misinformation".

A report to members of Flintshire council's executive argues children at the Applied Behavioural Analysis (ABA) unit "often fail to generalise... skills they have learnt".

It says unnamed parents complained the unit "restricted the development of their child's independence skills" and left them with "increased dependency on adult support".

Parents supporting the unit say that is not true and have been backed by Prof Hastings who previously oversaw the Westwood ABA unit.

More on Wales here.

ABA in Ireland

Tish Durkin writes in The Irish Times:

Initially administered one-to-one, ABA is also very expensive. Moreover, in Ireland, ABA has been poorly explained and thus widely misunderstood. Presumably all this is why, even before winning a landmark 2007 High Court case, the State had all but declared ABA the enemy – and why it is so eager to declare victory now. After three years of negotiations over the permanent status of 13 ABA schools, the DES recently gave these autism-specific education centres only about two weeks to accept or reject the terms under which it proposed to convert them into State special-needs schools.

...

To its credit, the Government does fund home tutoring for very young autistic children, something that most families could not dream of affording otherwise. Bizarrely, though, the DES conditions this funding on the parents’ hiring ordinary schoolteachers to do the tutoring. In other words, the Government actively pushes for autism programmes to be run by people who most often know nothing about autism. Here again, madness. It’s like the State agreeing to pay for heart transplants – provided they are performed by gynaecologists.

• See an earlier story here.
• See Irish Autism Action's website and its YouTube Channel