Mark Lever Interview Part Four – The Language of Autism

National Autistic Society Chief Executive, Mark Lever

National Autistic Society Chief Executive, Mark Lever

Welcome to Part Four of the Interview with Mark Lever, Chief Executive of the National Autistic Society.

This interview was an in-depth and wide-ranging one and the various topics covered will be featured across six parts between 27th April – 2nd May 2015. Please click here to read the Introduction to this interview if you haven’t already.

This part of the interview looks at the debate around the way that people describe autism after Mark used the phrase ‘Person with Autism’, multiple times throughout the interview.

The medical/clinical sector tend to use the phrase a person “with” autism because they often view autism as something which is separate to the person and a ‘disorder’ which they are paid to ‘treat/cure or remove from the person’.

However, many autistic adults and advocacy groups believe that autism is not separate to the person and is instead reflective of a different personality and brain wiring.

As such, autistic advocates tend to prefer an autistic person is referred to simply as autistic not as a person “with” autism.

Note: The below part of the interview has been published verbatim with minimal editing.

Lydia: “When you say ‘people with autism’, are you are aware of the debate around…”

Mark nods in agreement: “We’ve just done a piece of research, quite an extensive piece of research into language because it’s one of the things that I was really concerned about because I spoke at the ARGH Conference up in Inverness [ARGH – Autism Rights Group Highland, Autism & Ethics Conference 2014] and Kabie [Brook – Chair of ARGH] was really clear about briefing me on language and use of language and ‘autistic people’ was the strong message.

And what our research showed and this is talking to…[Mark then directly asks] what do you prefer – ‘autistic people’ to ‘people with autism’?”

Lydia: “Yes, well the reason I personally – someone asked me this the other day and they said ‘why…’”

Mark then interjects: “Because, the autistic people I’ve talked to are split 50/50”.

Lydia: “When someone says to me ‘do you say person with autism or autistic person’ I say the reason that I like ‘autistic person’ or ‘I am an autistic person’ is because when you use the phrase a person ‘with autism’ it implies that autism is separate to the person and therefore it gives rise to the views that it can be cured and removed from the person.

Now, that is not what the NAS is saying [the NAS do not promote a ‘cure’ for autism] and I know that’s not anything that you engage with at all, but the problem is that that’s where that view comes from is the view that it is separate.

And I think when I look at the adults that have been clinically diagnosed, the ones who come up through that process, they’re the ones who are most likely to say ‘I am a person with autism’ because of course that’s what their clinician has told them so they don’t know any different.

If you come through people who haven’t gone through that process, they will [be more likely to] say ‘I’m an autistic person’, so that’s here that comes from.”

Mark: “Yeah, in fact not just people who’ve been diagnosed later on, I mean there are lots of people – and it is 50/50 I would say roughly – if you want…”

Lydia interjects: “I don’t know that it is 50/50, I don’t know that you can say that it is”.

Mark responds: “Well then I’ll just say the people that I meet, and I’ll get people who’ll say to me ‘I want you to see the person first’. What I try and do – and that’s why I just asked – I’ll will try and use the right phrase when talking to you now and then it’ll just be…you know because I’ve forgotten if I don’t [use the right phrase]. I will try and do that because I say you’ve got to speak to respect the audience that you’re talking to”

Lydia: “You do have internally though a group of autistic people who are involved in the NAS who are saying ‘can we use this identity-first language’, so it seems to have sort of…”

Mark interjects: “We’ve got…if you want to see the research that we’ve done…”

Lydia interjects: “What is this research then because I’m not familiar with this?”

Mark: “It’s only just been finalised. I’ll get Carol, [Carol Povey Director for the NAS Centre for Autism]…commissioned it because we know it’s something that’s really important – so can I just send it to you?”

Lydia: “That’s fine, so can you just give me an idea of who was it that you surveyed?”

Mark: “This was autistic people”

Lydia: “And are they from your membership?”

Mark: “No, it’s much broader than that”

Lydia: “How did you find them?”

Mark: “Through social media, through channels…”

Lydia: “So it’s an online survey?”

Mark: “Well, let me send it to you because I won’t answer the questions as well as you need…but I will send it to you”

Lydia: “Ok”

Mark: “I try and speak to respect the audience that I’m talking to. I don’t…I’ve had my knuckles rapped when I say ‘autistic people’ and my knuckles rapped when I say ‘people with autism’”.

Lydia: “Yeah, I think – this particular person that I was debating with, they were actually supportive of autistic people, so…he was writing to me with the phrase ‘person with autism’ and I didn’t bother correcting him…but he then asked, he said ‘I’ve noticed you’ve used this phrasing [autistic person], why is that?’”.

Mark: “It’s sort of a habit for me really…”

Lydia: “So, I tend to think well, if an autistic person says to me ‘I’m a person with autism’ I don’t really mind but when a non-autistic person says it that’s when I…”

Mark interjects: “I think…If I get in into the habit of saying it – It’s just because when I started I was challenged a number of times…”

Lydia: “Well, the research sounds interesting so I’ll have a look at that”.

***

What Happened Next?

During the Interview: Mark mentioned several times that he would send across the NAS language survey.

After the Interview: Mark did not send the survey.

A week after the interview a written request to see the research was submitted and after a five-week wait the NAS press office responded with the following comment on the language survey:

“We have been advised that and [sic] there is further testing still to be carried out before the results of this large-scale survey are implemented within the NAS. The full research report is currently being peer reviewed ahead of publication.”

The decision to decline to send through the survey results due to a ‘peer review process’ is called into question when it transpires that the NAS have already published the key results of the survey in the Spring 2015 edition of ‘Your Autism’ magazine – months before the peer review has been completed.

If they didn’t wish to send the full dataset due to the peer review process, the NAS could have easily sent through a copy of the summary results of the survey which had already been published – or a copy of the magazine which featured the article publicising the results.

Results from the survey were only obtained after discussing the situation with a contact who sourced an NAS member who kindly provided a copy of the article in Your Autism which highlighted the key results from the survey.

What do the NAS Survey Results Say?

During the Interview: In his response to the question of who was surveyed for the survey, Mark stated “This was autistic people”.

After the Interview: The article publicising the research shows that it wasn’t just autistic people who were surveyed:

“The National Autistic Society has conducted a piece of unprecedented research to understand the way people describe autism in the UK today. Almost 4,000 people responded. This large and representative group included adults on the spectrum, their parents, families, carers and professionals working in autism or a related field” (Bold emphasis added).

During the Interview: When discussing whether to use the phrase ‘Autistic Person’ or ‘Person with Autism, Mark states “Because, the autistic people I’ve talked to are split 50/50” and “I mean there are lots of people – and it is 50/50 I would say roughly.” I respond “I don’t know that it is 50/50, I don’t know that you can say that it is”.

After the Interview: After reviewing the NAS research findings it becomes apparent that my view that it is not 50/50 is supported by the NAS research:

Nearly 4,000 people were surveyed and the article clearly states that the phrases that the group of autistic people preferred were the following phrases ‘on the autism spectrum’ and ‘autistic’– the phrase ‘person with autism’ did not even feature as a preferred result.

During the Interview: When stating my view that it is the medical sector/clinicians who prefer the phrase ‘Person with Autism’ I comment “when I look at the adults that have been clinically diagnosed, the ones who come up through that process, they’re the ones who are most likely to say ‘I am a person with autism’ because of course that’s what their clinician has told them so they don’t know any different.”

After the Interview: My view that it is clinicians/professionals who prefer the phrase ‘Person with Autism’ more than autistic people is supported by the NAS research:

When the views from ‘Professionals working in autism or a related field’ are included, the NAS results state that this group have the strongest preference out of all groups for use of the phrase ‘Person with autism or person with Asperger’s’ .

The National Autistic Society doesn’t view themselves as the ‘Voice’ of autism

One somewhat ‘controversial’ statement from the NAS article on the language survey declares:

“At The National Autistic Society we don’t view ourselves as the voice of people on the autism spectrum. Rather, we aim to act as a microphone through which the voices of those whose lives are touched by autism are amplified”

The statement ‘we don’t view ourselves as the voice of people on the autism spectrum’ appears to contrast with the actions of the NAS Media Centre which seem to speak ‘on behalf of’ the autistic population to the media every day.

I asked some contacts for their view on the NAS statement in Your Autism that ‘We don’t view ourselves as the voice of people on the autism spectrum’. The most ‘apt’ response to the canvassing of opinions on the statement was sent in is as follows:

“I think it is total crap. for 2 reasons:

  1. It is untrue
  2. I believe organisations, like political parties need to actually have ideas and ethics and not just be led hither and thither by what they see as “public opinion” or the results of random surveys or focus groups. Also the whole concept of ‘lives touched by autism’ gives credibility to a whole load of people with negative attitudes.”

The above comment ‘gives credibility to a whole load of people with negative attitudes’ is reflecting the uncomfortable fact that many parents of autistic children and professionals who work with autistic people view autism negatively, and this is where the NAS attempt to represent all groups of people starts to come under strain.

Perhaps the reason why the NAS seem to be starting to distance themselves from acting as ‘the voice of people on the autism spectrum’ is because it is becoming clear that the preferences of autistic people can and do diverge from the preferences of parents and professionals.

The language survey is a good example of this – parents (who represent 97% of the NAS membership) prefer the phrases ‘with autism’, ‘has autism’ and ‘on the autism spectrum’ whilst professionals (who can pay large fees to attend NAS conferences and training programmes) preferred ‘with autism’ or ‘with Asperger’s’.

In comparison the autistic people surveyed preferred ‘autistic’ or ‘on the autism spectrum’.

My understanding is that the language survey has been ‘weighted’ towards the views of the autistic people surveyed and if this is the case then this is a positive approach for the NAS to take – however as I haven’t seen the research methodology behind the survey I am unable to confirm what this weighting is or how it works in practice.

The survey results are signalling that the NAS is going to adopt the phrase a person ‘on the autism spectrum’ in the future – however this has not been confirmed and the article says that the NAS will ‘use different terms when communicating with different groups’.

Opinion – Autistic People are more than a ‘sounding board’

I’ve been in touch with many autistic people who care passionately about the NAS and how it’s run and one recurring theme is the feeling that the NAS seems to be utilising them mainly as a ‘sounding board’ whilst keeping them at a distance from the ‘real decisions’ being made that affect autistic people.

My experience of dealing with the NAS has been no different.

I was approached by the Chief Executive and graciously invited to the Head Office when I announced I was researching the ‘thorny’ topic of how many autistic people are employed at a senior level within the NAS.

I was encouraged to email the Chief Executive directly, my train expenses from Manchester to London were paid for, I was given a two-hour slot for the meeting and an extremely warm welcome when I arrived.

When I persisted with asking ‘challenging’ questions during the fact-checking process after the interview – including requesting the NAS clarify their position on the topic of prenatal and pre-pregnancy testing (a topic which is covered in part five tomorrow) – I came up against the ‘machine’ that is the NAS Press Office.

Following our interview, after I sent in part of the transcript to enquire what actions would  be taken following an important statement Mark made on the subject of prenatal/pre-pregnancy testing for autism, Mark – via the NAS Press office – subsequently tried to ‘revise’ this statement and alter the verbatim transcription (full details in part five tomorrow).

After the attempt to revise the statement I asked the NAS to take steps towards establishing a formal public position on this important subject so that it is clear where they stand – they refused to do so and the whole process of corresponding with the Press Office felt like talking to a brick wall designed keep the autistic person as far removed from the decision making process on these important issues as possible.

My personal view is that it seems that sometimes the NAS keep autistic people ‘involved’ at Head Office level when it suits them (when they are looking for autistic people to feature in case studies for marketing materials for example) whilst keeping them ‘at a distance’ when it doesn’t.

It is clear that the NAS are in a difficult situation as the fact is that out of nearly 20,000 paying members, less than 500 are autistic adults. As a result the NAS may be conflicted between endorsing the views of their core parent membership – and the professionals who pay large fees for NAS conferences and training programmes – when at times those views seem to conflict with those of autistic people.

However, as long as the NAS retains the name the ‘National Autistic Society’, generates revenue from autistic-led training programmes like ‘Ask Autism’ and continues to speak ‘on behalf of’ autistic people in the media, autistic people will expect their interests to be represented by the charity.

Ultimately – as the final part (Part Six) of this interview will show – there is not a single autistic employee in a full time senior level Head Office role and not a single autistic employee representing the views of autistic people in the ‘magic circle’ of 24 NAS executives earning over £60k.

Whilst the NAS ‘Press Machine’ will no doubt talk about the number of autistic people they ‘engage with’ via their helpline and outreach centres, let’s not forget Mark’s comment in part one of this interview:

“I think we’ve got to get much better at communicating with, engaging with autistic people. And I know that sounds crackers – it’s the National Autistic Society, but I’m just being honest”

In addition, David Mery’s case study on his experience of dealing with the NAS Head Office on the ‘Ask Autism’ project is a reminder that the ‘autism-friendly image’ of the NAS their PR machine puts forward, doesn’t always represent the reality of how autistic people can be treated ‘behind the scenes’ at Head Office level.

Click here for a tour around the NAS media centre and see for yourself whether you think the NAS seems to act as a ‘voice’ for autistic people or not.

***

PART FIVE OF ‘AN INTERVIEW WITH MARK LEVER’ WILL BE PUBLISHED TOMORROW

Part five looks at the debate around genetic testing for autism – where does the NAS stand on Pre-Pregnancy and Prenatal tests for Autism?

Click here for links to all six parts of the Interview with Mark Lever, Chief Executive of the National Autistic Society.

About the Author

Lydia Andal is an autistic campaign journalist and author who draws attention to the issues affecting under-represented parts of society.

Lydia’s new bookAm I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for Adults (Digital Edition)’ is available to order now at all major digital bookstores with the print edition scheduled  for Autumn 2015.

You can read what other people say about the book and watch the 60 second explainer video here.

Lydia grew up in Essex before graduating with a 2:1 Degree in Business & Entrepreneurship and relocating to Manchester where she worked in the corporate sector before setting up her first business age 23.

As well as founding and editing The New Idealist magazine (now on hiatus), Lydia also created Short Story Sunday – a site for those who enjoy original short stories.

Lydia is an Ambassador for Potential Plus UK gifted children’s society which works to highlight that giftedness only represents potential – without special support many gifted children never reach their full potential in society.

FREE PREVIEW VIA AMAZON

You can read the opening section of ‘Am I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for Adults’ at the Amazon Kindle Store (UK).

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2 thoughts on “Mark Lever Interview Part Four – The Language of Autism

    • Hello Joe,

      Apologies for the long delay in posting this comment, I get so many email notifications sometimes I miss the important ones! I have come across some of your work online – If you sign up for the site newsletter on the link above your comment I can find your email address and get in touch to discuss your thoughts on this interview series in more detail if you wish.

      Best Regards,

      Lydia.

      Like

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