Hard News by Russell Brown


Autism and celebrity

I had a bad feeling yesterday afternoon when I saw Seven Sharp's Twitter account trill "Do you or anyone in your family suffer from autism? Watch tonight about a new miracle therapy that is working wonders for Kiwis overseas."

Firstly, the word "suffer" is disliked by many people with disabilties and it's regarded as offensive by some people on the autism spectrum, who do not regard themselves as "suffering". In general, it's best to be cautious about describing anyone as "suffering" from the disability.

Secondly, the word "miracle" is usually a very bad sign when it comes to autism therapies. There isn't a cure for autism as such (there isn't a test for it either), but there is every chance of improvement in negative symptoms, and that improvement can be dramatic. Moreover, most of the "miracle" cures that make the news are useless, or worse, harmful.

But Seven Sharp wasn't shying away. The headline on the story online is 'New miracle therapy for autism sufferers' and the caption is "Gill Higgins follows families going through a special new treatment for autism." (Update: We've had a prompt and appropriate response from TVNZ's Graeme Muir on this point. Good stuff.)

The "special new treatment" turned out to be ABA, or Applied Behaviour Analysis, which has its roots in the theories of Behaviourism developed by B.F. Skinner in the 1930s. It has been practised and developed as ABA since 1968 and has been officially part of New Zealand's autism guidelines since 2008, although it was being used here well before that.

ABA breaks down key skills and actions into small components and rewards the performance of each component. It's not uncontroversial and is regarded as a form of abuse by some autism advocates. But, as a friend of mine put it last night, "it's reasonable to say it works within the definition of working." It's a solution for some families. One thing it most definitely is not is new.

ABA is also very expensive, as you might expect of a therapy that involves up to 40 hours a week of one-on-one therapy. That's not such a problem for popera star Geoff Sewell and his wife Simone, who started their now seven year-old daughter on ABA at the age of two and have seen a notable improvement in her negative symptoms. Seven Sharp's report focuses on the Sewells, who are celebrities both through Geoff's career as a singer and through their frequent advovacy of autism "cures". I'm genuinely happy for them that their daughter is much better able to function in the world.

Seven Sharp's reporter, Gill Higgins, did a decent job of explaining the therapy when interviewed at the end of the piece by the hosts, in particular in distinguishing between a "cure" and an improvement in negative symptoms.

Higgins noted that ABA isn't publicly funded in New Zealand and the programme's clear angle was that it ought to be. But many other forms of therapy and support needed by autism families, most notably in school and for older children, aren't funded either and the problem has become worse as goverment budgets have stalled in recent years. Families dealing with autism receieve far less support than if they, say, have a child with diabetes. There's a massive class factor at work too: the poorer a family, the less likely they are to even get a diagnosis. It's a big call to declare ABA should go to the front of the queue when there are so many other unmet needs.

Another element of the report was more of a problem. The Sewells showed off a kitchen bench full of expensive dietary supplements, which they also credit for their daughter's improvment. There is simply no good evidence that this is the case. Spending money on these supplements is a poor use of family or public budgets. Loading a child with unproven supplements may also have consequences in itself. 

It turns out that the Sewells' appearance was part of a publicity blitz tied to Geoff's new album and that yesterday he also spoke to Mike Hosking on Newstalk ZB and Marcus Lush on Radio Live. Those interviews were alarming.

Sewell told Hosking that autism could be beaten "if you heal the underlying medical conditions" in particular in the gut, which he did by putting his daughter on a restricted diet (gluten, dairy and sugar free) for three years. The belief that autism is caused by gastro-intestinal inflammation is a tenet of the 'biomedical movement" in autism and was popularised by the notorious fraud Dr Andrew Wakefield.

It's possible that there is some correlation between gut problems and autism, but both a Cochrane Review and a consensus statement from the American Academy of Paediatrics could find no evidence to show that these exclusionary diets work. So severely restricting a growing child's diet for no good reason is not a wise thing to do.

And then it got worse. Sewell told Hosking about "detoxification" of his daughter to get rid of "a lot of heavy metals in her body from some vaccinations that were put into her". I can only think that that by "detoxification" Sewell meant chelation therapy. Last month, chelation therapy was included by the US FDA on a list of bogus and dangerous autism treatments.  The agency noted that "chelating important minerals needed by the body can lead to serious and life-threatening outcomes."

By comparison, Sewell further crediting the removal of wi-fi from the family home for his daughter's cure seemed quite benign, if even more absurd. All this went unchallenged by Hosking.

The interview with Marcus Lush played out in much the same way, although Marcus did seem uncomfortable with the way an entertainment interview kept turning to dubious medicine.

In both interviews, Sewell attacked Dr Warwick Smith, the paediatrician who diagnosed his daughter when she was two. On this, I have some sympathy. If Smith really did present the Sewells with their daughter's two year-old state as a lifelong one, and institutionalisation as a fait accompli -- rather than just preparing them for the possibility that she might never speak or interact meaningfully -- that's pretty terrible. I'd be angry in their position. I've been angry at a number of people we've had to deal with over the years.

Smith does have a reputation for sweeping statements (including the claim that all gifted children are on the autism spectrum) and he's known to be a keen prescriber. But surely he knows that prodigious (and occasionally rapid) improvements in negative symptoms  are not uncharacteristic of austism spectrum disorders. The world's most famous autist, Dr Temple Grandin, has long told audiences that she was a non-verbal "poo-smearer" until the age of four or five. My own sons have a various times, made rapid and lasting gains in their interactions with the world.

Parents who have not in the first instance accepted who their children are may be inclined to credit any improvment, real or perceived, to dubious therapies. In the cased of the Sewells, the picture is further clouded by the entire kitchen sink of nostrums they've thrown at their daughter. In reality, her progress is likely down to the things that we know work: one-on-one therapy, high-quality education and support, love and care.

I'm genuinely glad that their daughter is going so well. I just hope their fixation on a cure does not lead them to deny or suppress her nature as she grows up.

But in the end, the media have to think carefully about the role of celebrity here. The Sewells aren't doctors and some of what they say is not only medically invalid but potentially dangerous. The links page of the Sewell Foundation website includes a link to Generation Rescue, the similarly-minded organisation linked to Jenny McCarthy, who despite being a dangerous airhead, gets unending media coverage in the US. She, like the Sewells, is heard because she is an entertainment celebrity.

Celebrities get airtime because people want to hear them. That doesn't mean we in the media are absolved of responsibility for what they do with that airtime.

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