Support “The Sewell Foundation”? No thanks.

There has been a lot of media hype recently about “The Sewell Foundation,” and the family behind this charity. They got their story on the TV show Seven Sharp this week, and have had yet another article published about them on Stuff.co.nz. The media (and large segments of the public) are lapping up their story and promoting their charity, but a lot of the language the Sewells used to talk about autism rang warning bells, and the more I researched them the less I liked what I found. Some autistic adults and other parents are getting quite upset about the Sewells too, and I think people need to know why. (After writing this post I discovered an excellent examination of what’s wrong with the Sewells’ views over at “Public Address” – Russell Brown provides further arguments and evidence for why we should be concerned about the Sewells and I strongly suggest reading his article.)

The Sewells liberally use words like “cure,” “healing,” and “miracle” when it comes to their autistic daughter’s experience moving from being severely autistic to mildly autistic. They also refer to interventions that are “parent-proven” (rather than those which are supported by the scientific literature, one presumes). They talk about defying what they had been told was their daughter’s future, and use the positive outcome as proof that what they did works. They also talk about their preferred interventions as if those interventions haven’t been treated like serious options by the government here.

So what are these amazing interventions that our government is supposedly ignoring? ABA and dietary interventions. Oh. Not quite the miracle solutions you were expecting, right? Because this stuff is nothing new, it’s well-known, it’s been tested. These are just two options in the wide variety of interventions we know that can work for some families. Many interventions that have good evidence backing and good outcomes are already funded here – including speech therapy, occupational therapy, educational psychologists, physiotherapy. If a family wants to also try dietary options and ABA, they have some discretionary government funding they could put towards it (such as through using “carer support”).

If the point is ABA is too expensive for most families and the government should be supporting its implementation better, then that’s fine, there is a good argument for that (though it’s extraordinarily expensive if you want the 40 hours a week option as many do, about $60,000 a year) – the government here even recommends ABA. However, that is not the sole message of the Sewells (and even if it was, you should at least be aware that ABA is a highly controversial therapy in some quarters, some even view it as a type of abuse, here are just two of many attacks you will easily find on it).

Let’s take a moment to return the Sewells’ story: They were told their daughter was destined for an institution and wouldn’t learn to talk, they were given no hope. The fact that she’s doing well now is treated like evidence the current medical establishment and knowledge is wrong and that we need to look to the alternative therapies they discovered. I take a very different view of what their family went through: Their doctor should have never given them such a certain (and negative) prognosis. We know that it is hard to predict where an autistic child will be years from now. We know there are a range of developmental trajectories. We know that some therapies work very well for some autistic children but don’t make a difference to others, we know some autistic children have gut disturbances whereas others don’t, we know that autism has multiple different causes. We know some severely autistic children become well functioning children without the need for dietary interventions and ABA too.

Let me put this in a simple form for you: ABA and dietary interventions are neither necessary nor sufficient to recover a child from autism. Can they help? Yes, for many they can. Are they a miracle, that the dominant medical establishment is ignoring? No, not even close. Scientists have studied and continue to constantly study autism interventions and to openly share their findings, no one is hiding this from autism families. There is no conspiracy going on to keep autistic children severely autistic.

If we stop the story here, there’s nothing overly upsetting with the Sewells. Yes they seem to be acting like they found “the cure,” yes they use language that many in the autism community finds distorting and dangerous, yes they seem to be ignoring the fact that autistic individuals are a very diverse bunch who don’t all respond to the same therapies in the same ways, yes they are promoting what is considered by some to be an abusive therapy option. But the story doesn’t stop there, because the Sewells are promoting some other very dangerous organisations and views.

That becomes clear very quickly by even the most cursory of glances at their suggested “links” list (which has been carefully compiled – it only has 14 links on it, out of the thousands they could have chosen). It includes “Generation Rescue” – the widely criticised Jenny McCarthy charity that promotes the view that autism is caused by vaccines (the fact the Sewells align with Jenny McCarthy can be seen from way back in 2008 when they got a Stuff.co.nz piece written about how she inspired them) – and “Autism One,” who run conferences where people like Wakefield (that’s right, the guy who lost his medical license and committed fraud), Jenny McCarthy (also in the vaccine-causes-autism camp), and homeopaths (need I say more) are invited to talk to vulnerable autism parents – the Autism One website similarly promotes such views. The Sewells also promote “Defeat Autism Now” (“DAN”), again, one of the most notorious agencies for dis-proven autism interventions, who have even been sued for prescribing dangerous and un-necessary interventions for autism such as chelation.

This list of people and views the Sewells promote, sits alongside the language they use – talk of cure, miracles, and the general view that having autism is a “tragedy,” something to be “fought” and “battled.” It has not been surprising to see autistic adults and other autism parents on the Seven Sharp Facebook page, fighting back against the language and the way the Sewells view autism; talking about autism in such a loaded and negative way as the Sewells do, furthers the stigma against autistic individuals. Indeed, the Sewells appear to think autism is itself a stigma, a stigma that is removed not through fighting myths and stereotypes but through “healing:” “when you heal a medical condition the stigma of autism goes away.”

Personally, I would rather people didn’t go about promoting and funding a group that itself promotes and supports dangerous and disproven autism interventions. If you want our government to fund more ABA, well OK, I get that – ABA done well can definitely help some children. If you want to rejoice in the story of a family who found their own way to help their own daughter reduce her most debilitating autism symptoms, well OK, I get that too, let’s all be happy for them. But I wish the media and the public were being a bit more careful about what they’re pushing here. I would rather not see the Sewells and their organisation being presented as fighting for the rights of autism families, when what they evidently believe about the nature and cause of autism is what so many of us have been fighting against for years.

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12 Responses to Support “The Sewell Foundation”? No thanks.

  1. autismit says:

    Yes have to agree with what you’ve written – though I was pleased to see the profile of ABA therapy in NZ raised.

    • From what I can see of your own charity, that media time and interest in ABA would be much better directed towards Autism Intervention Trust. You appear to be evidence focused in your approach, and have a strong interest in ABA and providing that funding support to families, but without all the other damaging material that comes along with The Sewell Foundation. It looks like you’re a valuable and much-needed charity, thank you for the work you do for autism families.

      • nostromoswife says:

        Thanks A & O 🙂 We try our best though we are limited in what we can do and only operate in Wellington. In terms of ABA I feel the evidence stands for itself – there’s no need to call it a miracle, because it isn’t – it’s just an effective and measurable method of teaching. It really upsets me that the Govt. won’t support it because it apparently doesn’t work for everyone, by that analogy we wouldn’t fund most medical and educational interventions.

        • Very well said nostromoswife. (I’m going to go add your charity to my “Resources for New Zealand Parents” page now by the way, not sure why I didn’t add it earlier!)

  2. Elizabeth says:

    Thank you for this timely post – I had just come across reference to the Sewell Foundation and was wondering about it. This post is an excellent summary, thank you.

  3. Kiri says:

    You mention that some discretionary funding is available for ABA through Carer Support. Could you please elaborate. I have been in contact with Ministry of Health officials and they have told me that they do not provide funding for ABA. When I asked if other funding, such as Carer Support or Individualized Funding could be used for ABA, I was told that this was not allowed.

    I have also heard of families receiving some ABA funding from the MOH and the Ministry of Education, but whenever I’ve asked about this, I’ve been told that it is unavailable.

    • Hi Kiri, allow me to clarify.

      The money is not provided for the purpose of ABA, so that’s the wrong question to be asking of the Ministries. The money – from both the CDA and carer support for example – is provided to the carer to decide how it can be used to best benefit, within certain boundaries of course for Carer Support. The CDA has no limits on what you spend it on, so to focus on Carer Support: Carer Support payments can be used with a wide range of organisations that provide support programs for autistic children and their family. I used our Carer Support hours to pay a charity that provided ABA training and care. There were absolutely no issues with this – the charity was allowed to take these payments in this way and our payments were cleared without any issues at all. You can also use Carer Support hours to pay a carer to look after your child generally, this is up to you to select who to bring in to do that, you are completely free to use that money to pay some one who is a trained ABA worker.

      So just to restate: The money is not provided from either Ministry “for ABA,” so asking them to do that is completely the wrong approach. The money is provided for you to use in the care of your child, and you have some freedom in how you use it to do that. As long as you stick within the guide-lines for appropriate use of that money – and if you’ve read those guidelines you’ll see that they very easily include what I’ve been talking about above – then you’re fine.

      If it helps, imagine the difference between going to WINZ and asking if they provide money for cigarettes (or honey, or juice, etc), of course they’ll say no – they don’t provide an allotment of funds for those specific items. But ask them if they provide money for you when you’re unemployed so you can buy things like groceries and pay your rent, and of course they’ll say yes: The money is not provided and given out specifically for a single specified use, it is given out to meet a more generalised need. If you ask for money specifically for that one item or activity, you’re going to get a different answer than if you ask the broader question. Does that make sense?

      I hope that clarified the situation. If it doesn’t, or you’re still confused, please ask me further questions and I will try to explain further.

      Thanks for your question.

      (Edited to add: As a side-point, you may be interested in a post I wrote a while back about how bad the Carer Support system is – if you’re finding it hard to use and to understand how to use it, you are most certainly not the only one: https://autismandoughtisms.wordpress.com/2012/05/24/carer-support-days-a-flawed-and-failing-support-system-that-invites-fraud/ )

  4. Kiri says:

    Many thanks for the clarification. I’m glad you were able to use the funding to support your son in the way that you deemed most appropriate.

  5. Sheogorath says:

    My personal belief is that no one should use ABA to ‘recover their child from Autism’. To do that is to try and make them indistinguishable from their non-Autistic peers, especially the NT children, which requires taking away many, if not all, of their coping mechanisms, including non-harmful stims while not making them non-Autistic. Instead, ABA should be focused on enabling an Autistic child to cope better in a traditionally unwelcoming society while others should be told to ignore whatever non-harmful stims they have. Inclusion is as much about making space for those who are different as it is about making people fit a mould that isn’t quite the correct shape for them. Simples!

  6. Sheogorath says:

    From the article: Wakefield (that’s right, the guy who lost his medical license and committed fraud) […]
    May I just take this opportunity to point out that Andrew Wakefield didn’t lose his medical licence and commit fraud, he lost his medical licence because he committed fraud due to his clear conflict of interest. Just sayin’.

  7. I myself have Asperger syndrome (a form of autism), and I might as well put it simply.

    Autism cannot be cured, but it can be managed.

    And this is coming from someone who, despite having autism, has a good job, commitments to Scouts and theatre, and a keenness for travelling.

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