Emma Dalmayne, AIM’s CEO, together with Richard Mills and Kieran Rose attended a meeting at the National Autistic Society on Thursday 15th February discuss their concerns on agreeing to back legislation against quack “cures” for Autism. They met with Jane Harris and Sarah Lambert.
Effective legal protection is desperately needed against quack treatments being promoted for autism in the UK.
The meeting was enlightening and ended with the NAS agreeing to:
- back legislation,
- push for the MHRA to take an active role in combating fake “cures”,
- communicate the dangers–and the fact there is no cure for autism–more clearly,
- and be more open with autistic people.
From Jane Harris:
Dear Emma and Kieran,
Thank you both for coming in to meet with us today. As we highlighted in the meeting it is clear that we all share the same goal: protecting autistic children and adults from harm.
We agreed that there were lots of different things that needed to happen to make sure that autistic children (and adults) weren’t subjected to harmful treatments like MMS. Sarah and I noted that our charity weren’t opposed to there being new legislation in this area – we want the quickest and most effective route to the outcome we all want, i.e. harmful so-called ‘treatments’ not being used. It might be quicker to get good enforcement of existing laws – on child protection, safeguarding etc as well as consumer rights laws. I raised the issue around how long it can take to get something made into a law and the level of evidence Government would need to be convinced of the need of new legislation rather than enforcement of existing legislation.
On enforcement, one of the particular things that we discussed would help in this area was around the role of the MHRA versus the role of the FSA. Fiona rang while we were in the meeting with great news about the appeal in Ireland. The HPRA – Ireland’s equivalent of the MHRA – had taken this case on (following lots of hard work by Fiona). We all want the MHRA to do the same. Why has the MHRA acted on GcMaff, but left it to the FSA on MMS? I agreed that we would write to the MHRA and ask them for a meeting to push them to do more using their powers regarding dangerous substances like MMS. We will make sure that Emma has a copy of our letter and invite her to the meeting as well.
Kieran, I think I’m right in saying that you said that the benefit of legislation would be that it would send a clear message that there is no cure for autism and that there needed to be action where parents were harming their autistic children. You also said you didn’t think we were as clear as we could be in our statements about whether or not autism could be cured. We will look at how we’re communicating on this issue if you don’t think we are clear enough. We talked about the benefits of giving more opportunities to autistic people to speak to us about what we are doing, so that you can feed back things like this and more widely on what you think we are doing well and not so well on.
Emma, you highlighted how you had reported parents to the police and to safeguarding where you knew that they were giving their children harmful substances. In some of these cases, social services have rightly removed children from their parents as a result. You also told us that there had been cases where from having spoken to parents, you had helped them understand that treatments like MMS were harmful and they didn’t use them as a result. Kieran said that he also spoke to parents who were struggling and had helped them to understand their child better. It’s fantastic that you have both managed to help parents in this way. This is something we do see clearly see as our role too through our helpline and branch network. Please do feel free to give out our helpline number to parents.
We also talked about the Westminster Commission report. We will be reviewing it this week to send our feedback back to Barry. It needs to be clear about equal protection from harm for autistic children and adults.
1) Jane to write to MHRA to ask for a meeting. We’ll make sure you get a copy of the letter and invite you to any meeting
2) Jane and Sarah to look at communications on cures more widely (reflecting on Kieran’s comment that we aren’t as clear as we could be)
3) Jane and Sarah to look at how we can do more to be more open with autistic people and have more open discussions like the one today
Also, I just wanted to confirm I don’t have any relationship with any ABA schools or practitioners. I’m guessing there is more than one J Harris working in the field of autism. I hope that is helpful information.
Director of External Affairs and Social Change