Tue, 18 Sep 2018

Autism Innovative Medicine Studies-2-Trials project FAQ

This post appeared first on the Participatory Autism Research Collective (PARC) blog.

Written by: Panda Mery

As so little information has been made available on 115 million euros Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials) research project, we suggested to Autistica to publish their project agreement. They didn’t. Using the access to information scheme of the Innovative Medicines Initiative 2 Joint Undertaking (IMI2 JU), we also requested a copy of the ‘Autism Innovative Medicine Studies-2‐Trials (AlMS-2-Trials) grant agreement and its appendices’. After extending its deadline, the IMI2 JU sent us a partly redacted copy of the grant agreement. The redactions are explained in a cover letter.

The grant agreement document, even redacted, weighs in at 19 MB and 664 pages [The linked document is now only 112 page long; see the Update 2018-10-24 at the bottom of this post for an explanation; note that the page numbers indicated in the post were referring to the original document]. To help all those curious about this project to get a quick grasp on the project priorities, its ethical commitments and how it will involve autistic people, we are providing a summary in the form of a FAQ.

1. Will AIMS-2-Trials address the autism community’s priorities?


‘Currently, there are no effective medical treatments for the core symptoms of ASD […] Our overall goal is to address these shortcomings by adopting a precision medicine approach to better target treatments to patients through the use of validated stratification biomarkers, and by testing novel or repurposed drugs in a highly trained European-wide clinical trials network for ASD that links to other international efforts’ (p. 165).

None of the top 10 autism community’s research priorities include ‘treatment for the core symptoms of ASD’.

2. Will AIMS-2-Trials really only target the core symptoms of ASD?

No, but mostly.

For instance, epilepsy is an important co-morbidity for autistic people that has a large impact on their quality of life and is likely well suited for a pharmaceutical intervention.

The grant agreement briefly acknowledges this: ‘We also specifically include younger populations, and target core symptoms that are relatively under investigated together with associated symptoms impacting on quality of life and mortality (e.g. epilepsy).’ (p. 184).

Searching for ‘epilepsy’ reveals that out of all the seven work packages, out of the 34 deliverables of Work Package 2 ‘Validation of stratification biomarkers’, only three deliverables are about epilepsy: 'D2.4-6 Epilepsy: First study subject approvals package completed (registered in WHO or ICMJE, Ethics approvals delivered to the IMI); Midterm recruitment report; Report on status of posting results’ (p. 117).

3. Has AIMS-2-Trials an ethics board?

Yes. Two ethics board are described.

The 'External Ethics Advisory Board (EEAB). The EEAB will report to the SSC [Study Steering Committee]. An external independent ethics advisor (Professor John Suckling) has been appointed to oversee, with impartiality, the ethical concerns involved in this research. He will chair the board and be supported by a Deputy Director (Prof. Dr. Marcella Rietschel, University of Heidelberg) and other relevant experts including Prof Dr Ulrike Schulze, Zentrum für Psychiatrie Baden-Würtemberg.’ (p. 198).

'Professor John Suckling, Chair of the Psychology Research Ethics Committee, University of Cambridge, has kindly agreed to lead this aspect of our work. Through regular (quarterly) meetings, the Ethics Board will ensure that our ethical approaches are consistent across work packages and across countries wherever appropriate; provide expert advice to the rest of the consortium on any specific ethical issues arising in particular studies; engage key experts to provide additional advice where necessary (e.g. new EU legislation as it arises); and develop strategies to explore the ethical implications of novel results as they emerge from the consortium (see below). Professor Suckling will ensure that the Ethics Board includes relevant independent expertise to monitor the ethics issues in this project and how they are handled. The Board will be consulted at least on the following points (inclusion of fetuses, infants at risk, imaging, animal models, genetic information, dedication, clinical trials and data protection). A report by the Ethics Board will be submitted as a deliverable at the end of each reporting period.’ (p. 309)

And the 'Data Monitoring and Ethics Board (DMEB). The DMEB will report to the SSC. There will be an independent DMEB that consists of a researcher/clinician with expertise in ASD, a statistical expert, and an ethical expert. The DMEB operates in accordance with a charter that follows the guidelines of the DAMOCLES study group for charters on clinical trial data monitoring committees [118]. The aim of the DMEB is to protect and serve the clinical study participants (especially re: safety) and to assist and advise the TSB [Trial Steering Board] as to protect the validity and credibility of the clinical study/trial. The DMEB will receive a summary report of the study progress every 6 months, and review the progress and accruing data of this trial and provide advice on the conduct of the trial to the TSB. To this purpose, the DMEB will meet face-2-face or by teleconference not later than within 6 months after the start of the study and thereafter every 4 months or more often if needed. The DMEB will support risk management and review incidents associated with data collection (including brain imaging) of vulnerable participants, as well as monitoring data curation and stewardship. This will run in parallel with the institutional Clinical Governance system which oversees clinical and radiological safety issues.’ (pp. 198 and 403).

4. Was ethics an overriding concern of AIMS-2-Trials?


Overview of the AIMS-2-Trials governance structure The Ethics requirements work package (WP7) was a late add-on to the agreement. The history of changes shows that ‘An Ethics WP has been added: WP7 with deliverables D7.1-8’ (p. 162). This change is listed as having been introduced in version 6 of that part of the agreement, which is dated 2018-06-13, just five days before the project’s launch press-release. ‘Figure 14 Overview of the AIMS-2-TRIALS governance structure’ still only shows six work packages (p. 197). WP7 is the only work package which still has no figure (‘N/A’) listed for its ‘total number of person-months allocated’ to it (p. 94).

All of the eight deliverables of WP7 (defined as GEN – Requirements No. 11 to 18) will be ‘Confidential only for members of the consortium (including the Commission Services)’ (pp. 147-148).

The second paragraph in a section on ethics explains the overall approach as: 'Any consideration of ethical issues has to be set in a context of the potential benefits and risks of the overall project. Undoubtedly, better options are needed for treating ASD. AIMS-2-TRIALS will address this issue using the latest techniques of animal and cellular models, genetics, proteomics, imaging and behavioural/cognitive phenotyping.’ (p. 309). That seems to indicate that the benefits and risks of the project may overrule any ethical concern.

(‘benefit’ is used on 30 pages, but with no clear definition, nor a list of what may be the benefits of AIMS-2-Trials for autistic people. For instance, here’s another use in the context of actions for investors: ‘the Actions include ‘Sensitize investors to AIMS-2-TRIALS potential benefit to patients and market opportunity, to support commercial ramp-up post regulatory clearance.’ p. 192).

The secrecy about the project’s approach to ethics goes further. Although the grant agreement mentions 'Activities raising ethical issues must comply with the ‘ethics requirements’ set out as deliverables in Annex 1.’ (p. 59), the covering letter to the redacted agreement explains 'the Annex 1 is withheld in its entirety considering that access to a redacted document would be meaningless;’ (I have requested a review of that redaction, and a response is due by 2018-10-05).

5. Will the ‘universities, research organisations, public bodies [and] non-profit groups’ involved receive any funding?


The IMI will distribute 55 million and one euros to them. King's College London will receive 20 060 301 euros. The second largest recipient, Servicio Madrileno De Salud-Fibhug, will receive 5 502 025 euros. IMI2 has published the full list on its AIMS-2-Trials summary page. I’ve also updated the spreadsheet I had published earlier with this information.

6. Will the associated partners – Autism Speaks, Autistica and SFARI – receive any funding?

No, none of them will receive any of the IMI funding, however, they will receive benefits in kind.

The logos and mentions of Autism Speaks, Autistica and SFARI, as well as those of the Joint Undertaking and of the European Federation of Pharmaceutical Industries and Associations (EFPIA), and the EU emblem must appear in ‘any dissemination of results (in any form, including electronic)’ (p. 54) and in ‘any communication activity related to the action (including in electronic form, via social media, etc.) and any infrastructure, equipment and major results funded by the grant’ (p. 62). And they ‘must have appropriate prominence.’

7. Will autistic people be involved?

Yes, a few though this is still to happen.

Some autistic persons will be invited to be part of an Autism Representatives Group (A-Reps) and a Patient Advisory Group (PAG); at most one autistic person from each EU country is to be invited to the A-Reps. Of course a few researchers from the organisations involved may also be autistic (at least one openly identifies as autistic).

‘To ensure full collaboration with the autism community, we will create an Autism Representatives Group (A-Reps), using Autistica’s DISCOVER Research Network, to ensure patient and public involvement (PPI) with autistic people, their families and relevant stake-holders (e.g. autism charities, autism-related professionals) across Europe. The A-Reps group will include representatives from EU countries (an autistic person/family member, and a charity/professional rep in each country).’ (p. 135).

'The PAG [Patient Advisory Group] will report to the SAB [Scientific Advisory Board]. It will consist of representatives from patient organisations and individuals with first hand knowledge of ASD. We have agreements from Autism Europe and Autistica, who will work together with our Autism Representatives Group (A-Reps) that includes representatives from the Catalonian Autism Society, Gautena society, Federation Autism Madrid, Dutch Autism Society, and the Phelan McDermid Syndrome Foundation. The PAG will provide a focus of expertise in patient experience, and offer a natural vehicle for patient engagement in the consortium’s activities. It will meet formally once a year as part of the General Assembly meetings.’ (p. 199).

Note that the organisations that will be represented on the ‘Patient Advisory Group’ are not autistic organisations.

8. What is this patient and public involvement (PPI) the A-Reps will participate to?

‘The PPI will focus on the following objectives of Task 1: We will (a) develop Clinical Guidelines for Autism across the EU; (b) produce a ‘Time for Change’ ten-point Public Health Autism Plan, (c) translate these into 6 main European languages for dissemination to national governments and clinicians, (d) present these to European decision-makers and the UN, working with MEPs... All work will take place in consultation with AE, A-Reps and the KCL Policy Institute. Research on comorbidities and precision medicine policy development will be disseminated via conference presentations at the Annual INSAR and ECNP Meetings, Autism Europe, through the AIMS-2-TRIALS Clinical Network, and via webinars and press releases in collaboration with WP1 and WP5.2-3. Outputs: Dissemination of evidences based [sic] results to policy makers and the public. [...]

A focus of outreach will be the Autism Representatives Group (including autistic individuals, parents/carers, special educators, clinicians and researchers from across Europe (based on Autistica’s Discover Network; https: //www.autistica.org.uk/our-research/discover-network). In addition, our collaborative effort with co-leads Autistica and Autism Europe and our new Autism Representatives Group will ensure that we include as many Autism Charities in our network as possible. A number of charities across Europe, including those affiliated with Autism Europe such as Aprenem Associacio per a la inclusio de persones amb Transtorn de |’Especter [sic] Autista, Gaurema [sic] (San Sebastian, Spain), Nuevo Horizonte, Phelan McDermid Syndrome Foundation and The Dutch Autism Society, have already agreed to be part of our network. These organisations will be working with us on dissemination and patient and public involvement workshops to receive input from and provide information to the community. This will assist in the effective dissemination of information on educational events, policy initiatives, and newsletters (involving news updates on research, policy, education and other relevant materials). All these efforts will also be available on the new website and through the collaborative dissemination strategy with Autistica, Autism Europe and other partners. We will ensure that feedback is provided to the autism community and other citizens on how these groups interact to provide example of collaborative efforts for other projects, using a framework set-up by Shaping Autism Research (http://www. shapingautismresearch.co.uk).' (pp. 135-136).

9. Are there really 48 participants?

Sort of!

In Attempting to lift the veil of secrecy over AIMS-2 we published the authoritative list of 48 participants we had received from IMI2. The AIMS-2-Trials summary page now lists a 49th organisation: Greater Glasgow Health Board. However it is listed separately as a ‘Third parties’ (despite the plural, there’s only one). It will receive 195 000 euros of IMI funding.

The grant agreement document mentions ‘Greater Glasgow and Clyde Health Board’ (p. 275). This explains why the AIMS-2-Trials press release includes a logo for NHS Greater Glasgow and Clyde.

Autistic power

If after having read this FAQ and perused the grant agreement, this is a research project you want to support contact AIMS-2-Trials with your offer of participation.

If however, you are shocked by the limited autistic involvement, the late ethical considerations, the track records of some of the partners, etc. and have lost faith in this research, you have some power according to none other than Simon Baron-Cohen (the University of Cambridge is receiving 2 808 025 euros in IMI funding): ‘A large part of that collaboration [for genetics research] is with the autism community. If that community loses faith in this research, then progress will slow down. […] I hope the autism community will be willing to trust researchers who nail their colours to the mast in this way.’

You can also contact your Member of the European Parliament.

Table of contents for the AlMS-2-Trials grant agreement document

To help with navigating the 664 pages of the grant agreement, here’s a reconstructed table of contents:

Section title


Grant agreement


Annex 1 – Research and Innovation action (Part A)


Terminology definitions


Research and innovation actions & innovation actions (Technical annex – Part B)


Clinical trials (Other annexes)


Annex 2 – Estimated budget for the action


Annex 2a – Additional information on the estimated budget


Annex 3 – Accession forms for beneficiaries


Annex 3a – Declaration on joint and several liability of linked third parties


Annex 4 – Model for the financial statements


Annex 5 – Model for the certificate on the financial statements


Annex 6 – Model for the certificate on the methodology


(Note that many pages of the document are locked for copying/pasting so some of the quotes have been copied using OCR and typos may have been introduced; though as indicated with [sic] some of the typos in the name of organisations are in the original.)

Related posts

Update 2018-10-05

I have received a response to my request to review the redactions made to the grant agreement I had received. The outcome of this review is that

Following this assessment, I am pleased to inform you that I have concluded that the part of Annex 1 of the Grant Agreement that relates to the ethics requirements may be partially disclosed, with some of its parts redacted based on Article 4(1) (b) of Regulation (EC) No 1049/2001 (protection of personal data).

Two documents were attached: the Ethics-related excerpt of ANNEX I of the AIMS-2-TRIALS Grant Agreement (partly redacted) and the Work Package 7, described in Annex 1 of the AIMS-2-TRIALS Grant Agreement.

In fact this information was already included in the redacted grant agreement that had been sent earlier. Some further redactions have been applied to the documents received today, but the documents have copy/paste enabled making it easier to quote from them. So no further analysis needed.

Update 2018-10-24

The IMI2 JU Access to Documents Team emailed on 2018-10-22 that,

It has come to our attention that, contrary to what was stated in the letter responding to your first request of access to document, the file named ‘Full grant agreement redacted’ sent to you on 10 September 2018 included the annex 1 of the AIMS 2 TRIALS of the grant agreement. This information was shared with you inadvertently.

By publishing it on the internet this is now disclosing sensitive commercial information and personal data which were not intended for publication and for which you do not have any right to publish.

We therefore have to ask you to immediately remove the file from your internet page at the following link: http://gizmonaut.net/autism-documents/Full-Grant-Agreement-777394-AIMS-2-TRIALS_redacted.pdf.

I have replaced the content of the file with a heavily redacted one reduced from 664 to 112 pages.

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Sat, 11 Aug 2018

Attempting to lift the veil of secrecy over AIMS-2

This post appeared first on the Participatory Autism Research Collective (PARC) blog.

Written by: Panda Mery, Dinah Murray & Kabie Brook

The Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials) was 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, Director of Science, Autistica wrote a response that answered only some of our questions. Some people commented on both these posts (below each).

A key issue that appears pervasive with this project is the secrecy surrounding it. For any monitoring of AIMS-2 to be effective, a monitoring panel would need to a) have access to internal documents and staff of AIMS-2 projects, and b) be able to discuss them publicly. Otherwise either those doing the monitoring will not be able to understand what is happening or they will only be able to express that they have concerns or none, without being able to say about what!

Autistica will contribute £50,00 in-kind (equivalent to €56,274 at the exchange rate on the day I converted it). In-kind contributions from autism charities (the Simons Foundation, Autism Speaks and Autistica) combined will be €55.5 million. And the AIMS-2 grant is €115 million. That means that Autistica’s contribution is about 0.1% of the in-kind contributions from autism charities and less than 0.05% of the total grant; clearly any power that Autistica wields in that consortium is not financial. This makes the release of their agreement with AIMS-2 all the more important and it would help restore some of the lost trust.

The secrecy runs deep. Something as simple and essential as finding out the list of participants is fraught with difficulties. At launch, the AIMS-2 press release (pdf capture on 2018-07-31) stated there were 48 partners… and included 38 logos. We used the Innovative Medicine Initiative’s (IMI2) Access to document scheme to request the full list of participants as well as a copy of the AIMS-2 grant agreement, including its appendices (which should include details of any ethical processes). Requests are handled within 15 working days, unless IMI2 extends this limit, and our request for the agreement is still under consideration. However IMI2 did send us the list of participants. Not to make things too easy, the list was provided in a Word document with two low-resolution scan images (too low for OCR to work) of the print out of the table over two pages! So after a painstaking retyping here’s in exclusivity (the IMI2 JU Access to Documents Team did write that ‘the relevant information will be shortly published’ - we’re already more than a month and half since launch) the ‘List of beneficiaries’ of AIMS-2:



Short name





United Kingdom








United Kingdom
































United Kingdom








United Kingdom












United Kingdom




































United Kingdom














Fondazione Stella Maris










United Kingdom












South Africa




































United States




United States




United Kingdom








United Kingdom





(Here’s also the information as a spreadsheet in case you want to explore it further and the original Word document for reference.)

A few days after we received this list, in what must be a coincidence, the press release was updated and now features 48 logos (pdf capture on 2018-08-02 in case it has been changed again). The original 38 logos are a subset of the 48 ones. However if you compare attentively the logos and the list, you will notice that they don’t all match. When I queried this I didn’t get any explanation about the discrepancies, just that ‘we can confirm that the list of beneficiaries sent to you on Monday 30 July is authoritative and does describe all beneficiaries to the project.’

Some of the discrepancies have likely explanations. For instance the logos for 'KIND Center of neurodevelopmental disorders at Karolinska Institutet’ and for 'Karolinska Institutet’ likely are both for the same organisation (entry 21 of the table). For some it is possible that a logo, e.g., for the 'Nuffield Department of Clinical Neurosciences’ may correspond to that of a participant appearing under a different name (entry 11). However these are just guesses and do not explain all these discrepancies. For instance the 'NHS Greater Glasgow and Clyde’ whose logo features on the press release does not seem to fit with any of the participants on the allegedly authoritative list. Same goes for the logos of the Donders Institute and the Radboud University.

Could there be such a gross error in the press release? Or could there be more than 48 participants? We cannot say with the information currently available. And all that confusion is just about the basic information that is the list of participating organisations in the AIMS-2 consortium. If it is so difficult to get such basic information out of AIMS-2, getting access to what is needed for effective monitoring will require an enormous effort at best.

Dr Will Spooren, the EU-AIMS project coordinator (also Group Leader Behavioral Pharmacology at Hoffmann-La Roche) wrote a presentation, titled Precision Medicine Approaches in Autism Spectrum Disorders, giving a bit more details on AIMS-2. This does not mention ethics or autistic participation. Dr Spooren is also a co-author with Professor Dr Declan Murphy, EU-AIMS academic lead, and lead author Dr. Eva Loth, EU-AIMS project coordination, of a related paper titled Defining Precision Medicine Approaches to Autism Spectrum Disorders: Concepts and Challenges. This mentions ethics once: ‘A treatment that is likely only effective in early development would raise important ethical implications for clinical trial designs that usually first test safety, efficacy and side-effects in adults.’ According to these two documents, their only ethical concern is testing drugs on babies, and that would only raise ethical implications so would still be considered. And no mention of autistic involvement either.

So the situation a month and half after launch is we’ve managed to get a list of participants, but found discrepancies with the press release that remain unexplained. We found some further documents that demonstrate little attention to ethical concerns and no interest in autistic participation, other than as test subjects. There is no information at all on the agreement between participants. Autistica is talking about convening a committee to select a panel, but with a lack of clarity on its composition (it could be made of a minority of autistics from what is currently known) and no information on how any monitoring panel can be effective: this does not bode well.

Update 2018-08-23:

> Requests are handled within 15 working days, unless IMI2 extends this limit

The Innovative Medicine Initiative’s (IMI2) Access to document team has extended its deadline:

Your application is currently being handled. However, we will not be in a position to complete the handling of your application within the time limit of 15 working days, which expires on 21/08/2018.

An extended time limit is needed due to the volume of the relevant documentation, some of which originates from third parties which have to be consulted.

Therefore, we have to extend the time limit for 15 working days in accordance with Article 4(3) of the IMI Governing Board Decision IMI-GB-036-24092008 and Article 7(3) of Regulation (EC) No 1049/2001 regarding public access to documents. The new time limit expires on 11/09/2018.

> Or could there be more than 48 participants?

The ‘further particulars’ linked from the University of Cambridge’s job ad for a Research Associate to work ‘as part of the Cambridge team on the education, communication and stakeholder engagement work package of AIMS-2-TRIALS’ includes in its description of AIMS-2:

It involves 75+ partners across Europe, including academic institutions, industry partners, and charities.

So from 38 logos on the initial publication of the AIMS-2 press release, to 48 on the allegedly authoritative list of participants I received, we’re now jumping to 75+ partners, and that’s just for Europe (i.e., not counting the South African, Israeli and American participating organisations).

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Mon, 23 Jul 2018

Some questions about AIMS-2

This post appeared first on the Participatory Autism Research Collective (PARC) blog.

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:

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:

  1. 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?
  2. Which interventions are effective in the development of communication/language skills in autism?
  3. What are the most effective ways to support/provide social care for autistic adults?
  4. Which interventions reduce anxiety in autistic people?
  5. Which environments/supports are most appropriate in terms of achieving the best education/life/social skills outcomes in autistic people?
  6. How can parents and family members be supported/ educated to care for and better understand an autistic relative?
  7. How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are appropriately diagnosed?
  8. How can we encourage employers to apply person-centred interventions and support to help autistic people maximise their potential and performance in the workplace?
  9. How can sensory processing in autism be better understood?
  10. 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 employ an autistic Director of Science, James Cusack, and 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:

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. AIMS-2 will:

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?

Update 2018-08-02: See the Response from Dr. James Cusack to concerns regarding Autistica’s involvement in AIMS-2 on the PARC blog.

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Fri, 15 Jun 2018

When do the police find a detainee vulnerable and an appropriate adult is called?

The Home Office ran a consultation last year about changes to the Police and Criminal Evidence Act 1984 (‘PACE’) Codes of Practice. One proposed change was about when does an officer decides a suspect is vulnerable, which triggers the requirement for an appropriate adult (AA) to be present for key aspects of the suspect’s time in custody such as their police interview.

The existing relevant section in the current Code C is:

1.4 If an officer has any suspicion, or is told in good faith, that a person of any age may be mentally disordered or otherwise mentally vulnerable, in the absence of clear evidence to dispel that suspicion, the person shall be treated as such for the purposes of this Code. See Note 1G.

The proposed change was:

1.4 If at any time an officer has a reason to believe that a person is a ‘vulnerable adult’ (see paragraph 1.13(d)), in the absence of clear evidence to the contrary, the person shall be treated as such for the purposes of this Code. See Note 1G.

I had sent in some concerns about that specific proposed update. Here’s the full text of my response:

From my experience as both an Independent Custody Visitor (ICV) and being autistic, I find the proposed change to section 1.4 of PACE Code C particularly concerning.

The change from 'has any suspicion, or is told in good faith,’ to the much higher standard 'has a reason to believe’ means that there would now be a strong presumption against calling an Appropriate Adult (AA) as an officer would have to reach the higher threshold of ‘a reason to believe’ to consider the detainee to be vulnerable and that an AA is needed.

Also disregarding ‘is told in good faith’ would be disempowering for the detainee and start the relationship by showing disrespect. Disabilities can be part of someone’s identity. So for instance no longer accepting an autistic detainee telling a custody sergeant they are autistic ‘in good faith’ would be denying their identity. In addition to the lack of respect, by being adversarial about the detainee’s identity and/or lived experience this might negatively affect cooperation and further stress the detainee.

Such a change to section 1.4 would also affect monitoring of whether an AA is called when one must. ICVs, for instance, wouldn’t be able to ensure that an AA has been called for detainees that appear to them to be vulnerable or tell them in good faith they are vulnerable, as an ICV cannot know the custody sergeant and/or interviewing officer’s belief, which is how a detainee would be deemed to be vulnerable.That what a detainee may say in good faith about their vulnerability would no longer be relevant will mean, if these changes happen, that ICVs will likely encounter situations where a detainee tells the ICVs that their vulnerability has been ignored while the custody sergeant tells ICVs they don’t believe that detainee to be vulnerable, basically creating an impossible situation where a detainee would have to prove their vulnerability to get access to an AA.

The Home Office recently published a summary of the responses it received (pdf). In that document, I’m identified as ‘11. Member of the public – independent custody visitor.’ Here’s the bit about section 1.4:

2.2.2 The main concerns were that certain safeguards for juvenile and vulnerable suspects were not sufficient and respondents proposed a number of further changes to address these issues. [emphasis in the original] These responses argued that:

The revised Code C (pdf), taking into account the responses received, has also been published and will come into force 21 days after The Police and Criminal Evidence Act 1984 (Codes of Practice) (Revision of Codes of Practice C, E, F and H) Order 2018 is made. (All the revised PACE Codes are published on the Consulation’s page.) Here’s the final revised text of section 1.4:

1.4 If at any time an officer has any reason to suspect that a person of any age may be vulnerable (see paragraph 1.13(d)), in the absence of clear evidence to dispel that suspicion, that person shall be treated as such for the purposes of this Code and to establish whether any such reason may exist in relation to a person suspected of committing an offence (see paragraph 10.1 and Note 10A), the custody officer in the case of a detained person, or the officer investigating the offence in the case of a person who has not been arrested or detained, shall take, or cause to be taken, (see paragraph 3.5 and Note 3F) the following action:

(a) reasonable enquiries shall be made to ascertain what information is available that is relevant to any of the factors described in paragraph 1.13(d) as indicating that the person may be vulnerable might apply;

(b) a record shall be made describing whether any of those factors appear to apply and provide any reason to suspect that the person may be vulnerable or (as the case may be) may not be vulnerable; and

(c) the record mentioned in sub-paragraph (b) shall be made available to be taken into account by police officers, police staff and any others who, in accordance with the provisions of this or any other Code, are required or entitled to communicate with the person in question. This would include any solicitor, appropriate adult and health care professional and is particularly relevant to communication by telephone or by means of a live link (see paragraphs 12.9A (interviews), 13.12 (interpretation), and 15.3C, 15.11A, 15.11B, 15.11C and 15.11D (reviews and extension of detention)).

See Notes 1G, 1GA, 1GB and 1GC.


1.13 In this Code:

(d) ‘vulnerable’ applies to any person who, because of a mental health condition or mental disorder (see Notes 1G and 1GB):

(i) may have difficulty understanding or communicating effectively about the full implications for them of any procedures and processes connected with:

(ii) does not appear to understand the significance of what they are told, of questions they are asked or of their replies:

(iii) appears to be particularly prone to:


1G A person may be vulnerable as a result of a having a mental health condition or mental disorder. Similarly, simply because an individual does not have, or is not known to have, any such condition or disorder, does not mean that they are not vulnerable for the purposes of this Code. It is therefore important that the custody officer in the case of a detained person or the officer investigating the offence in the case of a person who has not been arrested or detained, as appropriate, considers on a case by case basis, whether any of the factors described in paragraph 1.13(d) might apply to the person in question. In doing so, the officer must take into account the particular circumstances of the individual and how the nature of the investigation might affect them and bear in mind that juveniles, by virtue of their age will always require an appropriate adult.

1GA For the purposes of paragraph 1.4(a), examples of relevant information that may be available include:

  • the behaviour of the adult or juvenile;
  • the mental health and capacity of the adult or juvenile;
  • what the adult or juvenile says about themselves;
  • information from relatives and friends of the adult or juvenile;
  • information from police officers and staff and from police records;
  • information from health and social care (including liaison and diversion services) and other professionals who know, or have had previous contact with, the individual and may be able to contribute to assessing their need for help and support from an appropriate adult. This includes contacts and assessments arranged by the police or at the request of the individual or (as applicable) their appropriate adult or solicitor.

1GB The Mental Health Act 1983 Code of Practice at page 26 describes the range of clinically recognised conditions which can fall with the meaning of mental disorder for the purpose of paragraph 1.13(d). The Code is published here:

Update 2018-07-14: Following the publication of the The Police and Criminal Evidence Act 1984 (Codes of Practice) (Revision of Codes C, E, F, and H) Order 2018, the revised codes will come into force on 2018-07-31. (On that date, the updated versions will also be added to the Police and Criminal Evidence Act 1984 (PACE) codes of practice web page).

Update 2018-07-31: The National Appropriate Adult Network (NAAN) has published an excellent detailed guide to the PACE Codes changes (PDF).

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Fri, 23 Feb 2018


WhatDoTheyKnow, the website created by mySociety to help make Freedom of Information requests and share the responses, was launched ten years ago. As part of the birthday celebrations, 50 significant news stories that have been uncovered through the site were published.

One of the stories I worked on is featured in the ‘Fact-checking’ section:


Freedom of Information is one way to counter fake news: it’s great to have facts and figures to link to when the truth is in dispute.


Very happy birthday to WhatDoTheyKnow!

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Mon, 01 Jan 2018

Blog posts in 2017

2017 posts (created with Wordle)

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Sat, 14 Oct 2017

Counter terrorism campaign, a risk for autistics

The National Counter Terrorism Security Office (NaCTSO) ran a counter-terrorism campaign for the travel industry this summer. It features a video titled How To Identify and Respond to Suspicious Behaviour that basically advises that atypical behaviour is suspicious and should be reported, i.e., autistics – and other neurodivergents – are suspect.

This campaign is problematic as it highlights that autistic behaviour should attract attention from police and security personnel. We, autistics, tend to have our idiosyncratic behaviours everywhere we go, and increased stress in a public space is likely to exaggerate our atypical behaviours. (This campaign worries me and consequently has raised my stress level, especially when going through transport hubs, as obviously I do not want to be wrongfully arrested again.) This counter-terrorism campaign is likely to exacerbate some of the very behaviours NaCTSO deems suspicious.

The accompanying ‘helpful leaflet’, again, lists examples of ‘suspicious behaviour’ that are common autistic behaviours:

I have done all of them. I am autistic, not a terrorist.

A few of my photographs of CCTVs and one of a police officer observing from behind a curtain in Downing Street:

Olympic securisation - Jurassic Park Traditional CCTV New CCTV - working now! Contemporary functional tree 2012 annual march against deaths in custody Old and new: lamps and CCTV (and Royal courts of Justice)

Terrorists will never be reliably identified. That is just not possible. As there are many more neurodivergents (a prevalence rate of 1% for autism is now considered a low rate) than terrorists (often mentioned as estimated to be about 3000 in the UK), identification measures with many false positives, such as those promoted in this counter-terrorism campaign, will not increase our security but will detrimentally affect neurodivergents. Focusing on atypical behaviour risks ruining too many lives and is not effective in protecting us from terrorist acts.

On a forum using Chatham House rule, in a discussion on this topic, a police officer suggested:

I think this is where we need to encourage autistic members of public to carry an autism card that can be verified by police - verification being important as cards would otherwise be abused by criminals. Anyone being stopped due to their autistic traits could produce their card and (in theory) be on their way quickly once their details have been confirmed.

As much as it would be nice to have a card that could just let you out of any situation, I see the role for autism cards as a communication aid, not as an enhanced privilege card. The card remains in the control of the autistic individual who can choose when to use it to facilitate communications. If well designed the card can be used in other context than just policing. Not all autistics will carry one and not everyone who carries one will want to use it. How autistics are being treated should not rely on the presence of such a card. The card has a role in helping communications by indicating some common or specific issues and possibly indicating the contact of someone to contact in an emergency. It is especially useful for non-verbal neurodivergents and those who become non-verbal in stressful situations such as an arrest.

Also for a verification scheme to be relatively robust would require a costly infrastructure including a (police) database of autistics. The history of databases identifying minorities raises many concerns. However, the main issue with such a system is about who has the power over our autistic identities. Currently the medical profession acts as a gatekeeper of the diagnosis. This is based on the medical model and is far from ideal. Services should be available on the basis of needs, not medical diagnosis, and one’s identity should not require an external gatekeeper. Adding to that, a police 'verified' system, would move some of the medical control into the hands of the police, this is the wrong direction of travel. We should move towards the social and neurodiversity models, not towards an even more authoritarian model.

Vigilance for hostile reconnaissance may not be the best counter-terrorism approach as it likely will criminalise a large population through false positives (and will waste police time). The problem is made worse by the ease with which some police forces may arrest people compared to their reluctance to apologise and offer compensation for erroneous and unlawful arrests. For instance, after my unlawful arrest, it took me more than four years for the Metropolitan Police Service to admit the arrest was unlawful and apologise (and twelve years later, their legal department still retains some files about that arrest).

The traumatising impact of ending in police custody for autistics, and other neurodivergent individuals, potentially targeted for their atypical behaviours by this counter-terrorism campaign can be serious if it ends up causing more wrongful arrests while not making us safer from terrorism.

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Mon, 05 Jun 2017

Autism: a guide for police officers and staff

Autism guide

This author has contributed to the new Autism: a guide for police officers and staff published by the National Autistic Society. The document contains simple dos and don’ts when interacting with autistic suspects, victims of crime and witnesses. It is a useful guide, however it would have benefitted from more autistic input such as case studies from detained autistics as well as the two from police forces.

The example interview question in the following extract from p. 22 comes from my police interview:

Finally, it is really important not to use leading questions. Autistic people (unless they also have accompanying intellectual impairment) are not more suggestible than non-autistic people. However, they may be more likely to agree with the interviewer’s suggestions or to statements that are untrue, and not understand the consequences of this.

For example asking, “Has your laptop got anything on it about plans for any terrorism acts?” is likely to elicit agreement, as a web browser or a text editor could be used to plan anything.

I wrote about this interview question in my ‘Calm, almost too calm’ chapter in the Being Autistic book and talked about it in a video about how typical autistic behaviour is considered suspicious for an Ask Autism training module.

The guide is available in PDF. It can also be ordered (free but with delivery cost) from the NAS.

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Tue, 28 Mar 2017

Grinker’s neurotypical arithmetic

Professor Roy Richard Grinker gave a lecture titled ‘The Changing Values of Autism: From Disease to Citizenship in Late Capitalism’’ in London last month. One of his slides, on the ‘Prevalence and access to services’, featured two boxes side by side, each with differently distributed dots in them.

It is available at 43’29’’ in the video of his lecture:

Grinker's 80 dots

With this slide on, Prof. Grinker commented:

In each of these boxes we have 80 dots. Same number. 80 dots here, 80 dots here. Please don’t count them, but I swear there are 80.

Prof. Grinker is obviously a long term participant in the Autism Industrial Complex, an expression he regularly uses in his lectures, and you would think he would be fully aware of some common attributes of autistics. I am thinking specifically of attention to detail and honesty.

When leaving the auditorium I mentioned to him that they were not 80 dots in the left box. He reiterated there were 80 dots in each and that he had asked us not to count the dots!

I followed up by email and pointed out that one didn’t need to count. The left box has 10 columns of 8 rows, so for there to be 80 dots, all intersections need to have a dot. It is visually obvious that this is not possible. If you zoom in on the screen capture of the video, you should be able to count 68 dots in the left box and 75 in the right, so neither have the claimed 80 dots.

It would have been easy to create slide matching the content, but instead Prof. Grinker asked us to trust his lie and then didn’t bother to respond to an email about it compounding this lack of veracity with a lack of respect.

This post appeared first on AutAngel’s Speak up blog, which accepts comments.

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Sun, 26 Feb 2017

Autistic Hackney residents participate in developing an autism strategy for the borough

The Hackney council established an Autism Alliance Board in 2016 to eventually create an autism strategy for the borough. Autistics, parents and carers joined to establish a User Engagement work group to contribute to this work.

Autism  infinity awareness symbol We’ve published a few web pages at Autistic Hackney to give some information on the work group, how to join it and some key documents.

One of these documents, the Terms of Reference of the Hackney Autism Alliance Board, reflects some early successes of our work group:

The Board has also adopted some Engagement and Consultation Principles that were developed by our work group. These principles include a section on autistic representation on the Autism Alliance Partnership Board, which was the basis for most changes to the Terms of Reference and also for ensuring that autistic representatives and carers on the board should be remunerated for their participation. Another section on accessible meetings suggest accommodations for sensory needs and that if an autistic representative needs a break, the meeting is suspended for everyone. These principles also recommend that consultation on the strategy is conducted in ways to make it accessible to most autistic Hackney residents.

Work is now about to start on drafting the strategy. If you’re autistic and live in Hackney, check out the Autistic Hackney web page to find out how to join our User Engagement work group and contribute to the strategy work.

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Sun, 19 Feb 2017

Transport for London’s retention of CCTV images

Transport for London (TfL) has published information about how long it retains footage from some of its many CCTV surveillance cameras on its Surveillance Cameras and Road User Charging web pages and the Metropolitan Police Service (MPS) has published some additional data in a letter (pdf) to the Chair Police and Crime Committee of the Mayor's Office for Policing And Crime (MOPAC) dated 2017-02-06. Here's the combined data:

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Sat, 14 Jan 2017

GCHQ did not illegally spy on me

In September 2015, along with 662 other claimants, I joined Privacy International's campaign 'Did GCHQ Illegally Spy on You?' of applications to the Investigatory Powers Tribunal to investigate whether we were subject of unlawful mass surveillance by Government Communications Headquarters (GCHQ). The Tribunal had 'already concluded that, to the extent my information was shared with the UK Government Communications Headquarters (GCHQ) by the US National Security Agency (NSA) prior to 5 December 2014, such action was unlawful and a violation of Article 8 of the ECHR'.

PI's Did GCHQ Illegally Spy on You

The Tribunal wrote me in May 2016 to ask why I believe I may have been targeted for surveillance:

Please find enclosed a copy of the judgment handed down following a hearing that the Investigatory Powers Tribunal held on 15th April 2016. You attention is drawn in particular to paragraphs 46 and 64 of the judgment.

The Tribunal has carefully considered your complaint and Human Rights Act claim in the light of this judgment and in accordance with its normal procedures.

The Tribunal has asked me to inform you that, in the absence of receipt by the Tribunal of any further submissions from you by 24th June 2016, your complaint and Human Rights Act claim will stand dismissed, without further order or notice to you, as unsustainable, that is frivolous within s.68 (4) of the Regulation of Investigatory Powers Act 2000.

Any such submission would have to outline the basis, in respect of your asserted belief that any conduct falling within subsection s.68(5) of RIPA has been carried out by or on behalf of any of the Intelligence Services, and whether there is any basis for such belief; such that the “individual may claim to be a victim of a violation occasioned by the mere existence of secret measures or legislation permitting secret measures only if he is able to show that due to his personal situation, he is potentially at risk of being subjected to such measures.” (Zakharov at 171).

It is rather ironic to be asked for why I may be a target of surveillance when I complained about mass surveillance. However I complied with the Tribunal's request and sent six such potential reasons.

In December 2016, the Tribunal wrote to inform me that either I was spied on lawfully or not spied on at all and that in that respect my human rights were not breached. And that as far as it is concerned that is the end of the matter:

I write in connection with your applications to the Investigatory Powers Tribunal dated 18 September 2015.

The Investigatory Powers Tribunal has carefully considered your complaint and Human Rights Act claim in the light of all relevant evidence and in accordance with its normal procedures. The Tribunal has asked me to inform you that no determination has been made in your favour either on your complaint or your Human Rights Act claim.

I would like to explain the role of the Tribunal under the Regulation of Investigatory Powers Act 2000 to assist you in understanding the effect of this decision by the Tribunal. Under rules made under that Act the Tribunal has a duty to ensure that no information is disclosed which is contrary to the public interest or prejudicial to national security. Under section 68 (4) of the Act when not making a determination in favour of an applicant, the Tribunal is only permitted to inform such complainant that no determination has been made in his favour.

If no determination is made in favour of the complainant that may mean that there has been no conduct in relation to the complainant by any relevant body which falls within the jurisdiction of the Tribunal, or that there has been some official activity which is not in contravention of the Act. The provisions of the Act do not allow the Tribunal to disclose whether or not you are, or have been of interest to the security, intelligence or law enforcement agencies. Nor is the Tribunal permitted to disclose what evidence it has taken into account in considering your complaint.

As set out above the Tribunal is not permitted to give any reasons for its determination. Accordingly the file on these applications will now be closed and the Tribunal is not able to enter into any further correspondence about them.

However, this is not the end of this legal action as 'Human Rights Watch and six individuals lodged a challenge with the European Court of Human Rights, demanding that the UK Investigatory Powers Tribunal confirm whether or not they were subject to surveillance by GCHQ.'

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Mon, 02 Jan 2017

Blog posts in 2016

2016 posts (created with Wordle)

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Tue, 29 Nov 2016

Are surveys fair to autistics?

The National Autistic Society (NAS) ran a survey about terminology between December 2013 and February 2014, which informed its campaigning and led to the publication of the article Which terms should be used to describe autism? in Autism Journal in 2015.

As part of an otherwise frustrating dialogue with the NAS, Carol Povey, Director of its Centre for Autism, shared some of the processed anonymised data from this data as used internally by the NAS. A partial set of the cleaned data as processed for the article was later obtained from Liz Pellicano and Lorcan Kenny. The data for the article had been cleaned by the paper's authors in their initial submission and following review comments. Unfortunately, these data sets were shared in confidence and neither have been published.

In trying to better understand these datasets, I noticed some discrepancies between them. A concern is that the process of cleaning the data before analysis may affect survey-based articles on autism in a specific way. When both autistics and non-autistics are surveyed, the cleaning process appears to disproportionately affect the autistic cohort. Here's the text of the letter to the editor of the Autism Journal in which I detail this concern:

Does data cleaning disproportionately affect autistics?

In Kenny et al.’s paper (2016), titled ‘Which terms should be used to describe autism? Perspectives from the UK autism community’, the authors analysed data from the UK’s National Autistic Society’s (NAS) survey on terminology. In the paper, they detail how they removed a significant number of participants prior to data analysis. They state,

In all, 4622 people responded to the survey. Participants who (a) did not specify any connection with autism (n=19), (b) did not complete all four key questions on describing autism (n=453), (c) were under 18 years or preferred not to state their age (n = 284) and (d) were not resident in the United Kingdom or preferred not to state their place of residence (n=396) were excluded from the data set prior to analysis. Subsequent analysis was therefore based on complete responses from 3470 participants.

I believe that comparing results from the raw data and that of the data with these participants removed shows that this removal has disproportionately affected the processing for autistics compared to that for the other categories of respondents such as families and professionals.

For example, in Table 2, the modes for four rows for the ‘autistic’ column are different for the processed data compared to the raw results. Only one row is different for the ‘Parent’ and ‘Family/friend’ columns and none for the ‘Professional’ column.

I would suggest there is a reason for this. Anecdotally, autistics who have issues with the wording of survey questions or the possible set of answers often either object to continue filling in the survey or skip the offending questions (and often attempt to get in touch with the researchers for corrections and clarifications). There are 453 incomplete such entries in the NAS survey by autistics – which have been removed from analysis and, ultimately, were not taken into account for the processing in the final article.

This very limited comparison raises the hypotheses, supported by anecdotes, that cleaning of data in surveys targeted at both an autistic and non-autistic cohort may introduce a bias disproportionately affecting the responses from autistics. Further work on whole sets of data before and after the cleaning for several surveys is required to reach any conclusion.


Kenny L, Hattersley C, Molins B, et al. (2016) Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20(4): 442–462.

Autistic responses

Looking solely at responses by autistics in the cleaned data, i.e., the autistic perspective, there are a few interesting outcomes (see tables below).

The preference for identity-first terminology (e.g., I am autistic) by autistics is clear:

Also ‘autistic person’ is always rated lower, by autistics, than ‘autistic' or 'is autistic’. This seem to imply that adding 'person' is redundant, though it may of course be context dependent.

Lastly, the second table below shows at least 53% of the autistic respondents were aspie, so the autistic respondents may not represent the full diversity of autistics.

What next?

Hopefully some researchers will investigate further whether the cleaning of data in surveys targeted at both an autistic and non-autistic cohort does introduce a bias disproportionately affecting the responses from autistics.

Several questions in the survey had very similar, but different, sets of answers and I wonder how many respondents analysed the subtlety of the different questions when answering them. (It also means that one cannot directly compare the different questions as the sets of answers are not identical.)

This important research paper raises many issues about accessibility at all stages of research, when surveys questions could be confusing and the way the data was analysed may have created bias disproportionately affecting autistic respondents, who may have felt unable to answer one or more of the questions. The solution to improve autism research is to involve autistics from the design to the analysis of research projects.

Which words/phrases do you prefer to use when communicating about autism? (Select all that apply)Autistic
On the autism spectrum56%
Autism spectrum disorder (ASD)39%
Autistic person36%
Has autism35%
High functioning autism (HFA)32%
Person with autism28%
Autism spectrum condition (ASC)28%
Low functioning autism (LFA)8%
Classic autism6%
Pervasive developmental disorder (PDD)5%
Kanner’s autism2%
Kanner’s syndrome1%
Other (please specify)20%
How do you describe yourself, your child, or those you work with? (Select all that apply)Autistic
Has Asperger's53%
Aspergers syndrome51%
On the autism spectrum45%
Is autistic35%
Autism spectrum disorder (ASD)28%
Has autism28%
High functioning autism (HFA)23%
Autistic person22%
Autism spectrum condition (ASC)18%
Person with autism18%
Is Aspergic6%
Pervasive Developmental Disorder (PDD)3%
Classic autism2%
Low functioning autism (LFA)1%
Kanner’s autism1%
Kanner's syndrome0%
Other (please specify)11%
Please rate the following words or phrases (mode)Autistic
Asperger syndrome5
On the autism spectrum4
Person with autism or person with Asperger’s4
Has Asperger’s or autism4
Autistic person3
High functioning autism3
Autism spectrum disorder (ASD)3
Autism spectrum condition (ASC)3

This post was simultaneously published on the Speak up blog, which accepts comments.

[Update 2017-01-31] Cas published on Spacious Perspicacious the result of their autistic survey also showing a clear preference for identity-first terminology:

The top 5 ways for us to describe ourselves were:

Bootnote Related post:

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Sat, 18 Jun 2016

Consultation process for the Met Detention Equality Impact Assessment flawed

In March 2015, Met Detention, the Metropolitan Police Service (MPS) centralised command for police custody, invited independent custody visitors (ICVs) to review its Equality Impact Assessment (EIA) (pdf) and provide feedback. As ICVs we do surprise visits to police stations and talk to the persons being detained. As we are independent of the police and have regular experience of the custody environment, this request for feedback made lots of sense and was welcomed.

Several members of my ICV panel did provide feedback and ICVs from other boroughs likely did as well. As we were not informed as to how our feedback had been used, I asked for a copy of the updated Equality Impact Assessment. In February 2016, I received a copy… of the same document we had been sent to review a year earlier.

I subsequently asked via a Freedom of Information request for all the feedback received when creating and revising this Met Detention Equality Impact Assessment. Met Detention could only find a single feedback dated October 2015 (pdf), that briefly touches upon two issues of interest to Superintendents. Nothing else, neither the feedback from ICVs nor from anyone else.

And they apparently did an exhaustive search for any feedback received. The initial response to my request was delayed as

'Enquiries are still being made in relation to the second part of your request.'

The first part of my request was about the EIA documents, and the second part was about 'the feedback received following each review of these documents'. When a further response was sent with some versions of the EIAs attached, I was then told:

'With respect to the second part of your request, reasonable searches have been made and as at today's date no information relevant to your request has been located.'

And an internal review (delayed as well) explained that:

'the review is satisfied that reasonable enquiries were carried out in the original case with the most appropriate Unit (Met Detention) for ‘The feedback received following each review of these documents’. Following further enquiries only one relevant feedback email was located and is attached to this review - subject to the exemption of personal information by virtue of section 40(2)and(3).

The review is satisfied on the balance of probabilities that no further information is held which falls within the scope of your request for feedback following each Equality Impact Assessment.'

That a year after a review process was initiated, only one feedback can be found raises concern as to the validity of this consultation process. This is compounded by the experience that the feedback that was thought out and had been sent in was obviously ignored.

Bootnote 1: Here's a copy of the feedback I had sent (well within the three weeks we had been offered):

Thank you for sharing this EIA. Here is some feedback (in no particular order) which you may hopefully find useful.

A related point is that there should be representation of vulnerable and disabled individuals (with MH, LD and/or autistics) in forums affecting what’s happening in custody. With Met Detention being a central command, this can’t happen at the SNB level, I would be interested to learn what consultative forums exist at which custody will be looked into.

Thank you for forwarding my earlier comments. As the draft EIA was shared specifically asking for our feedback I do hope the responses received will be taken into account.

Two further thoughts about the EIA I should have included earlier:

Thank you. FYI, I just realised that there’s guidance from the College of Policing as well about sensory issues for autistics and other vulnerable detainees:

'Those carrying out the risk assessment for detainees experiencing mental ill health should consider whether there is any additional risk of short and longer-term harm. It is also important to identify specific areas which could adversely affect those who are vulnerable because of learning disabilities and difficulties. For example, people who have autism or Asperger’s syndrome can be highly sensitive to their environment, and loud noises or bright lights may in some cases cause distress and possibly even aggressive behaviour.

The risks that a detainee with mental ill health or learning disabilities may pose to themselves or others are individual to each case and cannot be generalised.

Being in a police cell can have an adverse effect on a person’s condition if they are already suffering from mental illness. In particular, isolation and the noise in a busy custody suite can be aggravating factors.

Mental ill health and alcohol/drug misuse often coexist and a person’s impulsivity may make it more likely that they will self-harm or consider suicide.'

Bootnote 2: To become an independent custody visitor and join the panel of the borough your live or work in, apply to the Mayor's Office for Policing and Crime (MOPAC).

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