Written by: Panda Mery, Dinah Murray & Kabie Brook
Last month, the Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials) was launched as the largest ever grant given to autism research – €115 million, with money coming from the EU, pharmaceutical companies and charities.
A month has passed and little has been clarified about what exactly this project is and what autistic involvement there will be.
The Annual Activity Report 2017 of the Innovative Medicines Initiative describes AIMS-2, under its IMI2 Call 10’ as ‘Personalised medicine approaches in autism spectrum disorders’.
It is no wonder that a project on personalised medicine attracts big pharma. If you take a world-wide prevalence rate of autism of 3%, admittedly a slightly high one but it makes calculations easier, then if a participating lab is trying to develop a drug targeting a third of autistics, that drug could be sold to 1% of the world population.
Confusingly, autism is not listed in the strategic research agenda (SRA) for IMI2. The four major axes of research are listed as:
‘• Target validation and biomarker research (efficacy and safety)
- Adoption of innovative clinical trial paradigms
- Innovative medicines
- Patient-tailored adherence programmes.’
New genomic drugs do fit several of the strategic research agenda items though: biomarkers to identify autistics, trials of innovative drugs… and compliance with treatment.
Autistica stated that it is getting involved to ‘ensure that AIMS-2-TRIALS focuses on community priorities and involves autistic people and families at every stage.’ It is ‘contributing £50,000 in staff time and resources’.
Autistica surveyed the autistic community and published a set of 10 community priorities:
- Which interventions improve mental health or reduce mental health problems in autistic people? How should mental health interventions be adapted for the needs of autistic people?
- Which interventions are effective in the development of communication/language skills in autism?
- What are the most effective ways to support/provide social care for autistic adults?
- Which interventions reduce anxiety in autistic people?
- Which environments/supports are most appropriate in terms of achieving the best education/life/social skills outcomes in autistic people?
- How can parents and family members be supported/ educated to care for and better understand an autistic relative?
- How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are appropriately diagnosed?
- How can we encourage employers to apply person-centred interventions and support to help autistic people maximise their potential and performance in the workplace?
- How can sensory processing in autism be better understood?
- How should service delivery for autistic people be improved and adapted in order to meet their needs?
Personalised medicine approaches don’t seem to fit with these community priorities. How will this be reconciled?
Nothing was communicated before the launch, and very little in the last month. Even the initial grant agreement of AIMS-2 is confidential – or at least has not been published so will Autistica be able to hold anyone to account ‘publicly’? Publishing the confidentiality agreement binding them would help instil some confidence in such a statement. In the meantime Autistica shared some explanations:
‘We had two options – neither of which was ideal: refuse to take part and the bid would have gone ahead but with less autistic involvement and less focus on community priorities; or be involved and make the bid more inclusive, respectful and focused on what matters to autistic people and their families. Making that decision was extremely difficult. We would have been criticised either way, but I ultimately believe that it is better to be in the room than not. […]
We are creating a Europe-wide representative panel which can hopefully act as an independent voice on the project, make suggestions and consider approach in terms of policy. It’s not ideal as a mechanism for involvement, but it is better than what would have been there if we were not involved.’
The ‘we’ is Autistica aspiring to represent autistic people in the context of this vast project. Even though they have been drawing on more and more autistic support over the last few years, can they possibly get this right? At the moment many of those autistic people – who had for example reviewed research proposals, contributed to discussions, given their time towards projects, suggested lines of research, benefitted from grants, joined Autistica’s Discover network; and felt valued– are suffering a sense of betrayal. Yet in the bigger picture of the AIMS-2, Autistica is positioning itself as delivering our voice to the project.
James Cusack added: ‘I am particularly interested in how we can leverage [that] activity for greater impact.’
This remains very vague. What will be the process to select autistics, what will be their access to AIMS-2 documents and people, what will be their power, what confidentiality agreement will they have to sign, etc. Nothing yet concrete that indicates autistics will have a meaningful voice.
At this point, we need to give Autistica the benefit of the doubt and encourage them to extract the best possible outcome, i.e. to aim as high as possible to get more effective autistic representation and scrutiny on the project.
The panel Autistica mentioned should have access to AIMS-2 information and have a meaningful voice in the project. For instance it should:
- be given real powers to scrutinise and report on research agendas and practices
- be funded to meet at least twice a year;
- have a paid researcher whose time is devoted to the task of keeping track of the many AIMS-2 research strands;
- be autistic in make up;
- be separate from any family based discussion forum;
- be entitled to publish reports and to challenge researchers in person;
- be included and have a platform in all pan-project meetings;
- be able to call on AIMS-2 members to present on their work and answer questions.
On Twitter, Autistica also mentioned: We’re working with @AutismEurope to ensure that the priorities of autistic people are heard and to catalyse an approach that works for autistic people across Europe.’
This is a concern as Autism Europe is not led by autistics and Autistica should be working with autistic-led organisations in all European countries.
The press release for the launch of the initiative included many statements as to what AIMS-2 is, not all of them consistent, and not all fitting neatly under the personalised medicines approach either:
- ‘increase our understanding of autism and help develop new therapies to improve health outcomes and quality of life for autistic people.’
- ‘study autism and provide an infrastructure for developing and testing new therapies.’
- ‘also focus on why some autistic people develop additional health problems that severely impact both quality and length of life’
- ‘allow us to bridge the gap between basic biology and the clinic by offering personalised approaches that address problems which really impact autistic people’s lives’
- ‘take a precision medicine approach aimed at tailoring therapies to a person’s biological profiles’
- ‘create the first European clinical trials network for autism, as well as allowing for an internationally integrated partnership with charities, government agencies and industry to rapidly determine if therapies are effective’
- ‘better understand brain biology, and […] identify the health and social needs of autistic people and their families’
- ‘studying people through the lifespan to understand what drives good outcomes for autistic people and their families’
That press release also hints at autistic involvement: ‘AIMS-2-Trials brings together autistic people and their families, academic institutions, charities and pharmaceutical companies to study autism and provide an infrastructure for developing and testing new therapies.’ The embryonic websites lists some of the partners but not who are these ‘autistic people and their families’. This may come later!
A common statement among autistics is ‘once you’ve met an autistic, you’ve met one autistic’. This is meant to make the point that there’s a strong diversity among autistics. AIMS-2 turns that on its head to raise the prospect of lucrative targeted genomic drugs: ‘All autistic people are different which makes identifying and testing new therapies challenging. AIMS-2-Trials will take a precision medicine approach aimed at tailoring therapies to a person’s biological profiles. Achieving this will require developing tests that can predict how a person’s autism may progress throughout development and their likelihood of developing additional mental health problems.’
Another concern is who are the partners. The press release states that there are 48 partners… and lists the logos of 38. Ten partners are missing. Who are they?
8 thoughts on “Some questions about AIMS-2”
In the context of AIMS_2, Autistica represent the voices of NO autistic people. They consulted NO autistic people in negotiating their involvement and asked NO autistic people whether we wanted them to get involved at all. To say they are inclusive is therefore, a lie. They did what they did without reference to us and are now claiming they did it for us, which is as paternalistic as it is possible to be.
This is a good analysis but not very constructive.
Whether claiming to be representative of all autistic people or not (and I doubt there could ever be such a thing), is the founder of Autistica autistic and is that in any way relevant? What were there intentions? Is James Cusack autistic? You can see how tricky this is when you look at some deeper aspects.
I am autistic and joined the Discover network but I’m certainly not “suffering a sense of betrayal”. Have you asked all of the members how they feel?
So my questions are: What kind of specific pre-consultation could have been done in the circumstances and what can you suggest in order to help reduce a typical polarisation of views? Despite the dominance of big-pharma (and the world being such a terrible place), why not have a little faith in allowing this initiative to evolve and see how to better support those committing personal energy? (£50k is next to nothing, by the way).
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Hello Johnny. The trustees of Autistica are not autistic from what I can see, but James is. This is the point of view of the authors and from what I can see asking some pertinent questions and suggesting how to have some more meaningful involvement. This was patchy to say the least with the previous EU-AIMS project. For me a meeting of interested parties or event of some kind is perhaps needed.
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It is my perception that Autistica are positioned, in the context of the AIMS-2-Trials project, at the interface between the priorities and leadership of autistic-led groups and the priorities and leadership of the biomedical research establishment. They are bridging what has been historically (and continues to be) a very wide gap and I’m not sure who else could do so. Unfortunately we’re not yet in a place where the Chief Investigators of a study like AIMS-2-Trials would approach PARC (or similar) as a partner organisation (though I wish we were).
I fervently think the gap must be bridged if we are to draw biomedical research up alongside a progressive community agenda, and move towards a future where major biomedical studies partner from the outset with autistic-led organisations.
I am certain that this post – which includes a very constructive and clear list of ways in which autistic involvement should be delivered – will be read by Autistica folk with interest and taken on board. I am delighted that autistic people are willing to “give Autistica the benefit of the doubt” and continue to communicate with them. One of the surest ways to scupper Autistica’s efforts in the context of AIMS-2-Trials would be to cut all communication and it is a relief that this isn’t happening, despite the obvious hurt felt by many autistic people.
Finally, I would point out that precision medicine is compatible with at least two of the cited research priorities – to deliver better mental heath support (item 1) and anxiety support (item 4) – both of which might benefit from tailored drug development and clinical trials with autistic people.
I hope that autistic people will continue to work with non-autistic researchers (like me). We stumble and fall, but we need you to help get us back on our feet.
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I think the compatability of precision medicine and mental health support is somewhat tangential. A great deal depends on what is believed is the cause of mental health problems in autistic people and how ‘support’ is defined. An example of what I mean is that in the general population, it is understood that unemployment can be a factor in depression. It is currently believed a disproportionately high percentage of autistic people are unemployed so it’s not rocket science to see a connection there. So do we drug autistic people into being ‘not depressed’ (can we aim at them ‘being happy’ through pharmaceuticals? ) or do we create an environment that enables them to access meaningful employment, paid or unpaid – and then we get into other issues such as poverty and social inclusion, access to appropriate health care, maternity services etc. Then there is the issue of chronic stress and the health impact of that, both somatic and psychiatric…do we drug autistic people into being able to cope with their daily stresses, the sensory issues, the social demands of a society that now apparently prizes ‘social intelligence’ more than any other skill-set and where specialists and experts are becoming ‘enemies of the people’? Or do we work to ensure their attributes are appreciated and employed?
I do agree with James, that at least trying to make a difference from within is well worth a go; we need to aim at meaningful, constructive dialogue, always. I think Autistica has done a great deal in the last couple of years to genuinely engage with autistic people, not least by employing James as their head of science. However, I think he and they will struggle to make themselves heard within the enormous behemoth that is the AIMS project – which I see as having the potential for a scarily Orwellian outcome, with the drugging of the majority of humanity into some kind of homogeneity through the switching off and on of genomic activity throughout each individual’s development. It is a mad and truly worrying target, so the more voices of reason are able to engage with and perhaps disrupt that particular narrative trajectory, the better imho. If it doesn’t work, it doesn’t, if Autistica disappears into the maw of the beast, well then, at least it tried to make a difference.
Sue, I appreciate your intention with those last remarks; we all make mistakes, for sure. However, the consequences of those with power and agency stumbling are different to when those without do, we’re not standing on equitable ground. Many people have difficulties in staying upright because so much in the world is pulling them down and I’m not sure it’s up to those who have struggled all their lives to stay on their feet to keep those with power upright. I think it might be better to see the analogy in terms of a climbing team, roped together, where if one falls, the whole team does, so it’s in all our interests to keep each other from falling at all.
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I have no objection in principle, to biomarker research – it has potential to do much good. But also much harm. I wonder which will occur, when I look at the trustworthiness and integrity of the organisations Autistica has gone into partnership with. I do not believe that big pharma wants to make my life better – I believe it wants to make my life more profitable. I do not believe Autism Speaks wants to improve the quality of life for autistic generations to come, nor do I think curing autism is still their aim – I believe they are aiming for prevention. And I believe governments want a manageable population, cheap to run and acquiescent.
Autistica is contributing a scant £50k’s worth of resources to this multi-million $ research project. When / if their dubious partners find the means to play biomarker pick’n mix with autistic brains, what leverage will Autistica have, over what is done with this knowledge?
I believe that Autistica wants to do good, but I also believe that you do not achieve that by beginning with subterfuge and deals done behind closed doors.
I am one of those autistic people who feels betrayed. As a member of the Discover Network and its Insight group, Autistica has repeatedly invited me to endorse their aims and I have been doing so for a while now. Yet for a year or more, they were involved with activities that I would never have endorsed and they knew it. At least when I mask myself, I do so consciously – I did not consent to be part of their mask of ‘inclusion’.
Usually, I try to analyse information and make my choices as objectively as I can. In this however, my response to what has happened is personal, because of the nature of my relationship with those who manage Autistica, which I believed was one of friendship. I do not make friends easily, but when I do, I give my trust absolutely. They have absolutely abused it. So in this matter I am not pretending any element of objectivity – I have learned that when people are duplicitous, I am crap at seeing their agenda. So as Autistica knew they were going to hurt people (as I was told by Jon Spiers) but they did it anyway, I will protect myself from future damage and remove myself from any dealings with them over AIMS_2. I do not trust its aims and I do not believe Autistica has the power within the partnership that they are spinning. I think they have been allowed into the consortium to provide a veneer of inclusion and a supply of willing participants for research.
I know I am in the minority here – if autistic people want any voice in this project, they must work with Autistica as Autistica has railroaded the autistic community into it. But I have made the decision to abstain from participation in any future Autistica related work, other than the projects I have already committed to.
[…] you to Panda, Dinah and Kabie for their post and to Damian for the opportunity to post here. It’s really good to have a nuanced discussion […]
[…] launched as the largest ever grant given to autism research on June 18th. Two weeks ago, we wrote some questions about this project and the autistic representation and monitoring, if any. Dr James Cusack, […]