Response from Dr. James Cusack to concerns regarding Autistica’s involvement in AIMS-2

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Thank 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 about Autistica’s involvement in AIMS-2-TRIALS. We are taking on board a variety of views, some critical, some undecided and some very supportive. All of these views are valid and will inform how we move forward.

Our decision to take part in AIMS-2-TRIALS was difficult and in some ways imperfect but one we believe was right having weighed up both options.  We have more on our position on this at our website.

How do personalised therapies relate to our research strategy?

Personalisation is key if we want to deliver a future which works for all autistic people.  In our  research strategy we discuss moving beyond understanding autism and instead understanding every autistic person.

“We want research that attempts to understand autistic people in a more personalised way. We will identify which approaches work and address the needs of each person, as well as exploring the crucial components of effective interventions.”

For example, our community priority question 4: “Which interventions reduce anxiety in autistic people?” could benefit from being able to know which sorts of anxiety interventions work for different people – a personalised approach could assist with that.  Biomarkers could also help us predict the onset of seizures – something which was clearly a priority at an event on autism and epilepsy we recently held.   These are two of many examples which outline how a personalised approach could be critical if we are to meet the needs of all autistic people.

How can we get better at involving autistic people in decision making?

While we believe that our decision to participate in AIMS-2-TRIALS was in line with many aspects of our published research strategy, it has made us reflect on how we can become better at involving autistic people and family members in key strategic decisions, as part of our commitment to continuous improvement.

In May, our senior management team and Board agreed that our governance should change to ensure that strategic decisions around partnerships should involve the community even if they are confidential.  We are developing guidance on this at the moment. Likewise it is important to us that autistic people are represented on our Board. In February, we launched our apprentice board member scheme which supports autistic people to join our Board – two autistic adults joined our Board in August through this scheme.

In the three years since I joined Autistica, we have seen a lot of change and there is commitment from our team and the board to go further. These changes take time and are not always easy to deliver, and so I hope you can work with us as we change.

How are we representing autistic people in the AIMS-2-TRIALS project?

We want to do our best to ensure that autistic people and family members are heard in this project. We believe it is important these autistic people and family members work together and we have seen powerful examples of this, particularly through our top ten questions for autism research exercise.

We will convene an independent committee including autistic people and family members to help us select a larger panel of 50-60 people which accurately represents the autistic and autism communities across Europe.  The panel will help to advise on individual projects within the consortium and act as an independent voice.  The panel will also support the development training (for research and autistic people, policy and clinical recommendation and help to ensure there is appropriate communication and dissemination).

I have been talking with autistic advocates and groups from across Europe to consider how best we go about this with the resource we have. We are still at the early stages but will be in a position to share details in the next few weeks.

What can happen next?

I passionately believe that research can deliver a better future for all autistic people.  Doing that involves engaging with difficult issues, different people with different needs or priorities and having nuanced discussions. I hope that the panel can allow every voice to be heard and achieve the aims stated above to improve the lives of autistic people.

Dr James Cusack.

Director of Science, Autistica

 

 

 

7 thoughts on “Response from Dr. James Cusack to concerns regarding Autistica’s involvement in AIMS-2”

  1. “In May, our senior management team and Board agreed that our governance should change to ensure that strategic decisions around partnerships should involve the community even if they are confidential. We are developing guidance on this at the moment.”

    That’s to cover ‘confidential partnerships’, right? Does that mean Non-Disclosure Agreements?

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  2. Thank you for your response however I find disappointing that it does not provide any further clarifications about AIMS-2 and in particular how both access to AIM-2 information will be possible as well as freedom to discuss publicly such information. I’ll detail these concerns later separately.

    Several specific sentences in your response lack details and as such add to the current confusion:

    * ‘In February, we launched our apprentice board member scheme which supports autistic people to join our Board – two autistic adults joined our Board in August through this scheme.’

    That’s nothing to do with AIMS-2 but is interesting nonetheless and would appear to be an excellent iniative. However the same lack of transparency seems to apply. The only board I can find on Autistica is its Board of trustees and on https://www.autistica.org.uk/about-us/trustees I can’t identify two autistic members having just joined. I also searched the Autistica website for mentions of an ‘apprentice board member scheme’ but that did not return any relevant result. And I checked all the news (https://www.autistica.org.uk/news/news) since February when this scheme was launched to no avail. As I am a member of Autistica’s Discover network I also search for mentions of ‘board’ in emails I have kept from Autistica and can’t find any relevant one either. So I can’t find any concrete information on this scheme, nor on the new board members and you didn’t provide any link for further information on something that is fully under the control of Autistica (and not subject to any IMI/AIMS-2 agreement).

    * ‘We will convene an independent committee including autistic people and family members to help us select a larger panel of 50-60 people which accurately represents the autistic and autism communities across Europe.’

    If this committee is to include, and not be made of, ‘autistic people and family members’ then it must also include some other category or categories of persons. Which ones? By distinguishing ‘autistic people’ and ‘family members’, this obviously means including non-autistic family members of autistics. There are already so many non-autistics involved in AIMS-2 that it would make sense for such a committee to be constituted exclusively of autistics (including autistic parents and autistic siblings – obviously). Will autistics be in the minority in the committee and panel planned by Autistica?

    * ‘The panel will help to advise on individual projects within the consortium and act as an independent voice. The panel will also support the development training’.

    To ‘advise on individual projects’ the panel will need access to information. To ‘act an independent voice’ the panel will need to be able to discuss publicly the projects. As everything related to AIMS-2 is still shrouded in mystery more than a month post-launch, how will anyone be both allowed access to information and not be bound by confidentiality agreement preventing them from publicly speaking about the projects? If there’s no answer to that conundrum, a panel will be a token voice, not an effective monitoring mechanism. It is positive for a panel including autistics to ‘support the development training’, but wouldn’t be better for the training to be autistic-led and the panel monitoring the quality of that training?

    There’s much more to raise about the lack of transparency of AIMS-2 than we mentioned in our original blog post and I touched upon in this comment. I will address this in more details later.

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  4. [There seems to be some issues with WordPress preventing Kabie to post a comment, so I’m posting the comment below written by Kabie on Kabie’s behalf. It was initially written on August 6th. – Panda]

    I am rather disappointed in Autistica’s reply, it doesn’t tell us much new or directly address many of the the issues raised in the original blog.
    It feels as though information is only being released when they are pushed or directly questioned, this doesn’t feel honest or open and makes me worry about how their future plans of a committee will work.

    For example:

    ‘In February, we launched our apprentice board member scheme which supports autistic people to join our Board – two autistic adults joined our Board in August through this scheme.’

    This wasn’t announced until after the statement was questioned here, why? I had heard nothing in May or from May to August and the information didn’t turn up in searches. See here for the statement released on 3rd August:

    https://www.autistica.org.uk/news/new-board-apprentices

    Currently Autistica’s announcements and engagements appear to be reactive rather than genuinely inclusive / informative. It feels as though holding back is their current natural state which isn’t good when they are joining AIMS -2 to apparently support Autistic people’s interests?

    I don’t believe that it is Autistica’s role to be ‘representing Autistic people’ they are not an Autistic People’s Organisation and have not been elected to carry out such a role. I would hope that Autistica and other similar organisations would always amplify Autistic people’s voices but I also have concerns about that: will the suggested ‘committee’ be chaired by Autistica, or otherwise controlled by Autistica? (It seems so) Why will more nonautistic people be included – as Panda says it is mostly Nonautistc people involved already.
    I agree with Panda that any committee should be of Autistic people, including Autistic parents.

    Kabie Brook

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