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.
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.
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:
- London Underground stations: 14 days (according to TfL)
- London train stations (including tube): up to 14 days (according to the MPS)
- London Underground trains: 72 hours
- TfL Bus stations: 30 days (according to TfL) or for up to 28 days (according to the MPS)
- On-bus CCTV: between 4 to 10 days depending on the type of bus and hard drive installed
- Body worn cameras: 14 days
- Trams: up to 72 hours
- DLR: up to 14 days
- Victoria Coach Station: 28 days
- London River Services piers: 30 days
- Traffic monitoring and enforcement cameras: Images are only recorded if a vehicle is seen committing a traffic contravention. If a Penalty Charge Notice (PCN) is not issued they are deleted after 28 days. If a PCN is issued the images are deleted 180 days after the PCN is closed.
- Details of each payment of a charge: 24 months from the date of the transaction (regardless of whether or not you are a registered customer)
- ANPR data and images are automatically deleted after payment of the charge has been received or if your vehicle is registered for a discount or exemption
- For Autopay customers, ANPR data and images are retained until after the account has been settled, usually a maximum period of two months
- Details of a discount are retained for 40 months after the date you were last granted a discount
- Details of a Penalty Charge Notice (PCN) are retained for seven years after you paid the PCN (this will include images of the vehicle you were driving)
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'.
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.'
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.
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.
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 spectrum||56%|
|Autism spectrum disorder (ASD)||39%|
|High functioning autism (HFA)||32%|
|Person with autism||28%|
|Autism spectrum condition (ASC)||28%|
|Low functioning autism (LFA)||8%|
|Pervasive developmental disorder (PDD)||5%|
|Other (please specify)||20%|
|How do you describe yourself, your child, or those you work with? (Select all that apply)||Autistic|
|On the autism spectrum||45%|
|Autism spectrum disorder (ASD)||28%|
|High functioning autism (HFA)||23%|
|Autism spectrum condition (ASC)||18%|
|Person with autism||18%|
|Pervasive Developmental Disorder (PDD)||3%|
|Low functioning autism (LFA)||1%|
|Other (please specify)||11%|
|Please rate the following words or phrases (mode)||Autistic|
|On the autism spectrum||4|
|Person with autism or person with Asperger’s||4|
|Has Asperger’s or autism||4|
|High functioning autism||3|
|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:
- I’m autistic - 66.3%
- I’m on the [autism] spectrum - 40.8%
- I’m Autistic - 30.9%
- I have Asperger’s Syndrome - 29.9%
- I have an ASD (autism spectrum disorder or autistic spectrum disorder) - 23.1%
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.
- The findings for the suitability of 21 suites to support disabled and Muslim detainees, and Transgender detainees/staff on p. 8 is in a spreadsheet which is not accessible. Either make this spreadsheet accessible when sharing this EIA or remove the reference to it.
- The constant jumping between custody staff/workforce and MPS detainees/external with several terminology used is a bit confusing. It would help to have a clearer signposting of whether a section is about staff or detainees.
- There appears to be a strong focus on MH & juveniles, and also some mentions of wheelchair users. Impact of the custody on those with learning disabilities and/or who are autistics is lacking.
- There should be a section addressing hyper- and hypo-sensitivities. Sensory, noise and light hypersensitivities are common among autistics, but other combinations also happen and these are not exclusive to autistics. The custody environment can be a sensory nightmare severely affecting the functioning of those having such sensitivities.
- Custody staff tends to be reactive to detainees demands. Detainees with MH can find it difficult or impossible to make requests. A particular concern is of detainees getting dehydrated because they do not ask for water and custody staff is not proactive in offering it.
- In potential changes to the cell environment, facilities for the detainee to wash his/her hands should be considered. It is obviously hygienic, but is also a requirement before food can be touched and prayers for certain religions.
- A sex-related external impact that has been missed is ensuring that custody staff is mixed. There have been situations, especially when short of staff, when a custody suite shift has been operated only with female DDO, this meant that no male detainee could have a shower for instance.
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:
- In relation to the point I already made about hypo and hyper sensitivities, there should be a mention in the EIA about interview rooms that are 'soft interview' environment. As I understand it these are less intimidating interview room, often used for children, vulnerable detainees, victims and the bereaved, etc. This is likely to be better for sensory needs (less echo, less smell of sweat, softer lighting, more physical comfort, etc).
I have seen a video filmed in such an interview room when attending a Crown Court in a case where the victim was a young autistic woman. I have never seen any such interviewing rooms in Islington or Hackney. Are they available elsewhere in the stations or do only some custody suites/stations have such rooms?
The guidance 'Think Autism. Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update.' has the police as one of its target audience.
- This guidance recommends the police to 'have access to expertise to support adults with autism and consider the most effective way of ensuring that autism awareness guidance/training is available to staff.' The EIA should highlight the impact on custody staff training and also how considerations are given for appropriate adults called for autistic detainees to have been trained about autism.
- The guidance also discusses dealings with 'issues such as training and awareness, screening, and reasonable adjustments and the use of IT systems to better support people with autism within the criminal justice system.' So the EIA should list what reasonable adjustment can be made for autistics in the custody environment.
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).
Over the past two years, the Metropolitan Police Service (MPS) has detained fewer and fewer persons for longer and longer. Information obtained via a Freedom of Information request shows that all 740 police cells available 24/7 are staffed and run by Met Detention, the MPS centralised command for police custody. This transfer of control from the Borough Operational Command Units to Met Detention happened early 2015. The average occupancy rate of these cells has been 44% over this period. 20,465 persons were detained by the MPS in March 2014, 18, 457 in March 2015 (a 9.8% decrease) and 16,793 in March 2016 (a further 9% decrease).
The average waiting time between the arrival at a station and the authorisation of the detention by the custody sergeant has remained more or less the same at respectively 22, 22 and 21 minutes in March 2014, 2015 and 2016.
However, the average detention duration was already long in March 2014: 12 hours and 54 minutes and has been getting longer ever since. That increased by 4.5% to 13 hours and 20 minutes in March 2015, and further increased by 8.7% to 14 hours and 39 minutes in March 2016.
The average time spent in custody last month (including the initial waiting time) was 14 hours 59 minutes and 27 seconds, just 33 seconds short of 900 minutes (see graph below). That's 1 hour 45 minutes more than two years earlier.
That's not the only issue affecting the custody environment, custody suites are understaffed and a recruitment freeze on Designated Detention Officers has made the situation worse. One suggested solution is to close several custody suites.
As part of the autism acceptance month, I was invited to make a short presentation at the CLR James Library in Dalston, Hackney. Below are the preparatory notes I wrote for this short introduction to autism.
Being autistic is a different way to be human. An atypical way of experiencing and relating to the world. A different way to think and process information.
Being autistic is developmental, it is lifelong. It is not a mental illness though autistic people may have mental health issues such as anxiety and depression often brought on from the frustration of not being accepted.
'Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.' (Don't mourn for us; Jim Sinclair - 1993)
Autistics have spiky profiles, an unusual combination of abilities and challenges. Autistics can find some tasks easy and others difficult, and this may change depending not just on the task, but also on the environment, and recent experiences. You can imagine autistics as forming constellations (like stars).
Each autistic individual is different and will have different needs. Autistics are diverse in their autistic traits and their severity. Some have an unusually large vocabulary while others are non verbal. Some autistics work and have a family (but may still find it difficult to cope) while others need full-time support.
'Once you've met an autistic person, you've met one autistic person' (Lorna Wing)
Don’t believe the stereotypes.
Some autistics have deep empathy (even if expressing it can be difficult). Some are both trusting and trustworthy (white lies can be as abhorrent as any other lie). Some are conscientious and will persevere in difficult situations. Some are artistics. Some are experts. Some even have a sense of humour!
Some contribute to this society and many more would if we were better accepted.
People being unpredictable, social relationships may be hard. Autistics tend to lack an intuitive sense of what is appropriate to say and do in a social setting. Reading faces may not be intuitive either. Operating in groups or integrating a new group can be difficult as one has to figure out when to take turn in a conversation, accept some of it may be factually incorrect or boring, etc. It is also common for an autistic to have one or a few topics of special interest and be keen for most conversations to focus on these.
Sensory and information overload (which can result in pain), anxiety, difficulties communicating, etc. can cause great frustration leading to atypical behaviours, meltdows and shutdowns.
Processing the information coming in from the many senses all at once can be overwhelming. Also it is common for autistics to be over (hyper) and/or under (hypo) sensitive to some of their senses; and there are more than five, e.g., sight, hearing, taste, smell, touch, temperature, pain, kinaesthetic sense (proprioception), balance, etc.
So many senses are involved with food that eating and digesting often strongly affects autistics.
Autistics often tend to experience emotions more strongly, but may also appear not to have much emotional reaction or have difficulty moderating these emotions leading to outbursts.
Autistics might need to focus on listening, and therefore will avoid eye contact, which is often difficult and sometimes even painful, when concentrating.
Autistics might find subtle social conventions difficult, such as when people rely on implied conventions or do not say what they mean.
Autistics might be non-verbal and use Augmentative and Alternative Communication.
Autistics might find it difficult to deal with unpredictability, spontaneity and change, and require extensive planning and advance knowledge.
Also having to deal with many things at the same time may not be possible.
Stimming, calming repetitive movements or sounds that self-stimulate, and reducing stimuli helps with living. Autistic spaces where the environment and interactions are adapted to most autistic needs can be very calming places (however what is autism friendly for one autistic may be unhelpful to another). Meltdowns and/or shutdowns often happen when it is no longer possible to deal with the pain and/or stress being experienced.
As autism is an integral all-pervasive part of who autistics are – the way their brains and bodies work – many autistics are keen on the use of identity-first language and refer to themselves as 'autistics'.
Being called 'a person with autism' can be offensive as it implies that autistics should strive for a state when they are 'without autism'.
The medical model finds autism to be a professionally diagnosed condition (or even a disorder) that must ideally be cured and require interventions. A person is disabled and doctors offer to fix that person, to treat or cure the disability. Autism is defined as a neuro developmental disability characterised by impairments (DSM 5 / ICD 10):
Autism is legally recognised as a disability:
The social model considers that society must work to eliminate discrimination and accept us as we are in all our diversity. If someone has difficulties fitting in due to some impairments and/or differences, what is disabling is society not being inclusive. The aim is to remove all barriers, not just the physical ones, limiting life choices.
The world is made up of neurodiverse individuals: people with a variety of brains and minds, most are neurotypical and some are neurodivergent including autistics and everyone else whose brain is not typical (e.g., epileptic, dyslexic, etc.). Being neurodivergent is not intrinsically positive or negative.
The social model celebrates a neurodiverse world in which autistics (and others) are fully accepted with all their differences. It focuses on the positives, e.g., attention to details, factual, etc.
Everyone's identity should be respected. Autistic behaviours, which are likely atypical but not anti-social, should be respected and accommodated for. E.g., some care should be shown for autistic sensory needs and executive function difficulties, especially during interactions.
Challenge stigma and discrimination: 'As part of human diversity, autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception. [...] Autistic persons should be respected, accepted and valued in our societies, and this can only be achieved by respecting, protecting and fulfilling their basic rights and freedoms.' (Discrimination against autistic persons, the rule rather than the exception; UN rights experts - 2015)
Society must show equality, respect and full inclusion of neurodivergents.
Some related posts:
First published on 2016-04-15; last updated on 2016-07-05.
‘Undercover officers trained to spot people carrying out terrorist reconnaissance are being covertly deployed to boost efforts to thwart an atrocity on British soil, the Guardian has learned.
They have been trained in behavioural detection and sent to areas deemed at risk of attack, such as transport hubs and high profile buildings.
A pilot of the scheme detecting suspicious behaviours already claims to have deterred hostile reconnaissance, a precursor to terrorist planning for a potential attack which involves the collection of information so terrorists can maximise the effectiveness of their violent actions.’
This will likely result in more arrests of innocent neurodivergent people who happen to be different, have an atypical behaviour and may not conform in their reaction when approached. Autistic behaviour can be found to be suspicious and an arrest is traumatic even when one appears almost too calm.
If you have had any dealings with the National Autistic Society, please read an open letter to its trustees calling for its use of inclusive language, and its focus on the positive of autism and on equal opportunities for autistic people. (This letter concludes a campaign of engagement with the National Autistic Society detailed in a separate document.)
If you are supportive of this letter and are happy to sign it, email me and I’ll add your name as a signatory.
The letter was sent to the National Autistic Society trustees on 2015-09-04. They responded on 2015-09-11 with a short generic text (copied below the open letter) ignoring all the issues raised in the letter and demonstrating a lack of respect to the signatories.
I have requested the membership department of the National Autistic Society to terminate my membership with immediate effect.
First published on 2015-08-20; last updated on 2015-09-12.
Ten years ago I was unlawfully arrested when attempting to take the tube after work. The police noticed that my behaviour was different, found it suspicious and decided I must be a terrorist. In the book Being Autistic – Nine adults share their journeys from discovery to acceptance I explore this difference:
My understanding of how autism is an integral part of myself has been a long journey. I have always been different, eccentric, with very few friends. In primary school I was nicknamed ‘dictionary’ and in secondary school was bullied. I identified as a techie person and spent a lot of time with computers and online. Around 1998, when I was in my thirties, I read a review of the book Shadow Syndromes, which made me wonder whether I might be autistic.
The review picked among other things on the incapacity of one ‘patient’ to ‘clap in time to music’. This, in particular, resonated strongly with me. I can only clap in rhythm by visually syncing with another person’s clapping. I had never met or read of anyone with the same difficulty for what is apparently such a simple task. (It is ironic that this is not considered a characteristic autistic symptom.)
Reading more about autism and doing some online tests convinced me I was autistic and I self-diagnosed as having Asperger’s Syndrome. However coming from a medical family I was very aware of the unreliability of self-diagnoses generally and my family did not agree with this self-diagnosis. Tests, especially online ones, didn’t seem to be much more reliable. This resulted in believing that I was likely autistic, as many of my behaviours and past experiences matched some I had read about as being autistic, but not in the confidence to identify as autistic.
In 2013, in my late forties, I eventually sought a professional diagnosis. The reasons were two-fold.
Having previously worked as a software developer, a technologist and a journalist, I was unemployed, doing voluntary work and had decided to go back to university to do an MA. I thought a diagnosis could help me (as I eventually dropped out, this outcome was not fulfilled).
Also I had been wrongfully arrested. When I attempted to take the tube at Southwark station on 2005–07–28, police officers found my behaviour suspicious and decided to stop and search and subsequently arrest me as a potential terrorist. I thought a diagnosis would help if I was arrested again (this has not happened so far).
To get the diagnosis I went to my GP equipped with a printout of the information page for GPs from the National Autistic Society (NAS) and asked to be referred. My GP did not know anything about autism and asked me for a list of symptoms on one side of an A4 page and for a blood test. I attempted to explain that a blood test was irrelevant (and that I have an aversion to needles) but as I wanted the referral I went along with this request. (This GP also made some derogatory comments about my autism to my wife and we have both since changed surgery.)
In May 2013, a neuropsychologist eventually diagnosed that from information I had given him ‘there are features in social interaction and communication that, in the absence of other diagnoses, places you on the autistic spectrum – of the Asperger’s type.’
The validation from this diagnosis had the effect of enabling me to identify as autistic and to start to explore my autistic identity. Only after this professional diagnosis did I feel a sense of belonging, the confidence to join groups such as the Asperger London Area Group (ALAG) and to attend the Autscape conference; whereas before I felt I was not entitled to do so.
The diagnosis also helped me to reinterpret some traumatic experiences. It has made me realise that when police officers had found my behaviour suspicious, it was because of how they had interpreted some of my typical autistic behaviour, such as a lack of eye contact with them (i.e., I was ‘avoiding them’) and how I was dealing with the sensory-rich environment of the tube station. When I was made to wait in the entrance of the station before being led to a police van, some station’s alarms were ringing; I am hypersensitive to sound, but as my hands were still handcuffed I could not block my ears. When I was eventually processed, the custody sergeant found me ‘calm on arrival [at the police station], almost too calm’ and as a consequence I was ‘placed in a video cell on half hourly checks’. Again, my behaviour was found to be atypical.
During the police interview, some questions about my laptop, such as ‘has it got anything on there about plans for any terrorism act?’ and ‘has it got anything on there that might be construed as causing a public nuisance?’, particularly bothered me. The correct answers would have been ‘yes’ as I have a word processor, an email client, etc. that could all be useful to a terrorist and most likely can be construed to be of use for anything including causing a public nuisance, however, I realised that such answers would not have been been helpful to me and challenged the questions when the investigating officer just wanted answers.
Since the arrest I have become alcohol and fructose intolerant and I suspect this was a reaction to the stress. Policing in London and what happens to innocent individuals when they encounter the police became one of my special interests and I have researched, written and campaigned on civil and human rights issues such as the National DNA Database and the stop and search powers.
A year after my diagnosis, I publicly ‘outed’ myself and started some autism activism: I sent a contribution to a Home Affairs Committee inquiry into policing and mental health calling for police officers to realise that an atypical behaviour can be just different rather than suspicious; to consider hyper- and hypo-sensitivities that individuals may have; and to use clearer interviewing questions.
I am glad I sought out a diagnosis as it has been very helpful, but paradoxically this journey has helped me realise that for what is a neurodivergence, we should not need a medical validation. The medical pathway is not the best one, what we need is more legitimisation of self-diagnoses and acceptance of neurodiversity.
Being Autistic – Nine adults share their journeys from discovery to acceptance is published AutAngel, a community interest company. To find out more about the book and get your copy, visit AutAngel’s website.
Here are some related posts:
A year ago, I was interviewed for an Ask Autism e-learning module on policing made by the National Autistic Society. This module, aimed at an audience of police officers, has just been completed and published, and can now be purchased on the Autism and the police service web page. I made the point that police should consider atypical behaviours as just different and not suspicious; that they should take into account the hyper- or hypo-sensitivities that people might have, in particular to sound, light and touch; that they should ask clearer questions; and, that they should have better training. Here's as a my interview:
Here are some related posts:
I contributed two chapters to the recently published book Being Autistic – Nine adults share their journeys from discovery to acceptance. This book is aimed at adults having recently identified as autistic. To help readers reflect on the terminologies used by most autistics and most of those referring to us, and what are some of the implications of these choices, I wrote the following chapter:
I am not a person with autism. I am an autistic person.
Receiving a diagnosis or identifying as autistic – can be very empowering and often entails talking and/or writing about autism. There are many words and expressions to choose from. You might have noticed that the contributors to this book express different preferences in their writing. To help you navigate your way through this terminology, here are a few of my choices and their implications.
You can choose whether to use identity-first (I am an autistic person) or person-first (I am a person with autism) language. As autism is an integral part of who we are – the way our brains and bodies work – many autistics are keen on the use of identity-first language and refer to themselves as ‘autistics’. I find person-first language (being called ‘a person with autism’) offensive as it implies that we should strive for a state when we are ‘without autism’. A useful way to think about this is that you would say a person with a cold, but not someone with Jewishness, or with left-handedness. Of course I also respect each individual’s choice of the language they use to refer to themselves.
This distinction is linked to how you consider our differences and how we fit in society. I know of two basic models. The medical model, the most common in our society, explains the difficulties we may have as caused by us not fitting in. To improve our lives, we must change (e.g., forcing ourselves to look others in the eyes, not stimming,1 etc.). The social model,which I and many other autistics prefer, considers that if someone has difficulties fitting in that is because there are barriers that should be removed; society must work to eliminate discrimination and accept us as we are in all our diversity. While the medical model finds autism to be a problem that must ideally be cured and suggests interventions, the social model promotes equality, respect and inclusion.
Autism Spectrum Disorder (ASD), on the spectrum, Asperger’s Syndrome or type, Aspie, high (HFA) and low functioning and classic autism, etc. – a great many terms are used to label us, but we tend to use fewer to express our identities. One reason for so many is to reflect the diversity of autistics. A common saying, attributed to Lorna Wing, is that once you’ve met one autistic, you’ve met one autistic. Several of these words classify us along a spectrum with abilities ranging from very poor (low-functioning autism and classic autism) to above average (high-functioning autism and Asperger). This neat continuum, however, does not match the more complex reality. Some autistics will find some tasks very easy some days and impossible to do at other times; individual profiles tend to be spiky and changeable. Although my diagnosis was ‘on the autistic spectrum – of the Asperger’s type’, I feel that it is more inclusive to identify simply as autistic and support everyone in this constellation of diagnoses and identities.
What about everyone else – the non-autistics? A word often used by autistics (and others) to describe most of those who are not is ‘neurotypical’ (i.e., have a typical brain), abbreviated as NT. The world is made up of neurodiverse individuals: people with a variety of brains and minds, most are neurotypical and some are neurodivergent including autistics and everyone else whose brain is not typical (e.g., epileptic, dyslexic, etc.). Being neurodivergent is not intrinsically positive or negative. The social model celebrates a neurodiverse world in which autistics are fully accepted with all our differences, a world I want to live in.
To explore some of these issues in more depth, here are two good starting points:
1 ‘Stimming’ is self stimulatory behaviour such as hand flapping or spinning.
Being Autistic – Nine adults share their journeys from discovery to acceptance is published AutAngel, a community interest company. To find out more about the book and get your copy, visit AutAngel’s website.
Being Autistic, Nine adults share their journeys from discovery to acceptance is a book about to be published by AutAngel. You can pre-order your copy at a discount for a few more days.
I contributed one of the journeys and I am celebrating autistic pride day by reviewing what should be the final proof of the book