Mark Lever Interview Part Five: The Debate around Genetic Testing for Autism – Where does the NAS stand on Pre-Pregnancy and Prenatal tests for Autism?

National Autistic Society Chief Executive, Mark Lever

National Autistic Society Chief Executive, Mark Lever

Welcome to part five of the interview I conducted with Mark Lever – Chief Executive of The National Autistic Society (NAS).

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 genetic testing for autism due to the concern around the potential threat to the future autistic population that prenatal and pre-pregnancy testing for autism represents (see blog page here for more background information to this topic).

During the interview I enquired as to whether Mark received the copy of The Autism Issue that was sent to him last August and when he said he couldn’t remember seeing it I provided a summary of the key debates around prenatal testing covered in the issue – including a reference to Simon Baron-Cohen’s comments that prenatal testing for autism could be considered a form of eugenics (Baron-Cohen is a Vice President of the NAS).

I then mentioned concerns about the marketing of a new ‘pre-pregnancy’ test for autism from Paediatric Bioscience which claims to have 98% accuracy in detecting a ‘form’ of autism which accounts for 25% of the autistic population (Click here for more information on the test).

Paediatric Bioscience markets the MAR test as a ‘family planning tool’ to help women decide whether or not to conceive with a potentially autistic child – or whether to utilise other options including surrogacy to mitigate the chance of having one. The Paediatric Bioscience website calls the MAR test a:

‘family planning tool to test women over 35 years of age to help them understand their risk of having a child with this type of autism prior to conception. This test will provide them with valuable information to help them in their decision to proceed with trying to conceive a child’

A 2013 article on TIME.com carried an interview with Paediatric Bioscience Lead Researcher Judy Van de Water and highlighted the following results from the initial clinical trial of the MAR test:

“If and when the test is available, Van de Water says that it probably won’t be used in pregnant women first. Instead, it could become a way to test women before they become pregnant to screen them for this risk of autism. Some women in the study who were informed of their antibody status have already decided against having further children.” (Full article here)

A 2015 article in U-T San Diego highlighted that this test is now being readied for launch into the market later this year (Full article here).

I asked Mark for his formal view as Chief Executive of the NAS on these developments as follows:

Lydia: “You are Chief Executive of the National Autistic Society, what is your view of the development of prenatal and pre-pregnancy testing for autism?”

Mark: “Horror, horror, horror. The idea of that is something that we don’t support at all and I’m not an expert in that field but personally I have real concerns about something like that being marketed in the way you’ve just described.

I personally have real concerns about the reliability of the science to do something like that apart from anything else. And, we are absolutely not in that place at all and I can understand why people would be really concerned about something like that being marketed in the way you described”

Lydia: “I think the issue is that with Down Syndrome there was some sort of gene that was identified that allowed women to have prenatal tests to detect with pretty much 100% accuracy whether or not they are going to have a Down Syndrome child and all publically available statistics show that since that was introduced 90% of women told that they are carrying a Down Syndrome child actually abort the baby…”

Mark interjects: “The extension of that to autism is something which really causes me major concerns.”

Lydia: “Yes, I think my last point on that is that does the NAS think it’s time to start discussing some sort of legislation to prevent that happening to autistic babies? So, that would come under some form of anti-eugenics legislation or something like that”.

Mark: “I, I mean certainly – I mean I’m straying into a territory that I’m not an expert in – but certainly we would definitely engage in a conversation about that because I think…I think the whole notion of that – you know that whole eugenics arguement is something which concerns me because where we come from is that the reason we’ve never really been – we’ve never been a bio-med type charity is that people on the spectrum deserve to have all the support they can get to achieve their potential. That’s where we come from and that is no different to anybody else actually that they should have the right to get that support to achieve their potential.

And so the idea that you know there might be people who say ‘well have this test and you can abort a baby if you think it might be autistic’ is completely alien to us and completely against everything actually that we stand for – so I’m absolutely clear on that.”

Lydia: “That’s great, that’s good news, thank you for discussing that”.

***

Editorial Note: The suggestion of starting a discussion around potential legislation for these tests was introduced because Mark and the NAS were previously very successful in driving ‘The Autism Act’ through parliament in 2009. This was a complex and important piece of legislation designed to improve provision for meeting the needs of autistic adults.

When Mark commented “I’m straying into a territory that I’m not an expert in” when asked whether it was time for the NAS start discussing some form of legislation around the use of prenatal and pre-pregnancy tests, it is assumed he is referring to the topic of these tests specifically rather than the process of holding discussions around legislation.

What Happened Next?

During the Interview: Mark made the statements “The idea of that is something that we don’t support at all and I’m not an expert in that field but personally I have real concerns about something like that being marketed in the way you’ve just described” and “we would definitely engage in a conversation about that”.

After the Interview: The following enquiry was submitted to the NAS:

“I am writing up Mark Lever’s comments on the NAS position on prenatal testing and after reviewing the NAS position statements have noticed that nothing has been updated on there to reflect the position he said the NAS took in the interview? http://www.autism.org.uk/News-and-events/Media-Centre/Position-statements.aspx

I’ve added the verbatim transcription below which is going to be in the article and would like an update on when the NAS will be adding a separate position statement on prenatal/pre-pregnancy testing? It’s nearly 7 week’s since this position was discussed with Mark and the NAS site hasn’t been updated yet.

Transcription:

Lydia: “Yes, I think my last point on that is that does the NAS think it’s time to start discussing some sort of legislation to prevent that happening to autistic babies? So, that would come under some form of anti-eugenics legislation or something like that”.

Mark: “I, I mean certainly – I mean I’m straying into a territory that I’m not an expert in – but certainly we would definitely engage in a conversation about that because I think…I think the whole notion of that – you know that whole eugenics argument is something which concerns me because where we come from is that the reason we’ve never really been – we’ve never been a bio-med type charity is that people on the spectrum deserve to have all the support they can get to achieve their potential. That’s where we come from and that is no different to anybody else actually that they should have the right to get that support to achieve their potential.

And so the idea that you know there might be people who say ‘well have this test and you can abort a baby if you think it might be autistic’ is completely alien to us and completely against everything actually that we stand for – so I’m absolutely clear on that.”

The NAS responded as follows:

Pre-natal testing

Mark has revised his verbatim response for greater clarity. (Note that we only issue position statements on some key, live national debates.)

Mark Lever, said: “Pre-natal testing for autism is not, at present, possible. If a test was developed, the NAS would be very actively involved in debates about their use. Screening at an early stage has the potential to improve the quality of life of autistic people so that, for instance, the right environment and education can be put in place as early as possible. However, the idea that people would say, ‘well, have this test and you can abort a baby if you think it might be autistic’, that is completely alien to us and completely against everything that we stand for –I’m absolutely clear on that.”

Editorial Note: The NAS were advised during the fact-checking processes which followed the interview that if any attempts were made to revise statements the suggested revisions would be published alongside the original statement and this is what has been done above.

The ‘revised’ response led to a chain of correspondence with Louisa Mullan, Media Relations Manager at the NAS when I clarified that the discussion was not restricted to the topic of prenatal testing but included a discussion around pre-pregnancy testing too.

I also raised the point that there is no ‘potential’ other than the potential choice of whether or not to abort when using prenatal testing for ‘early screening’ as the process of identifying autism early and providing the right education and environment for the autistic person – the ‘potential’ Mark highlighted in his revised response – can be arranged from a similar test administered after birth.

This debate was covered in The Autism Issue of The New Idealist where I interviewed several influential autism specialists about the use of the word ‘benefits’ in relation to these tests. Jonathan Green, Professor of Child and Adolescent Psychiatry at the University of Manchester commented:

“I’m not saying there wouldn’t be benefits, [but] it would raise major ethical issues. There could be benefits, there could certainly be downsides.

…what people have in mind for that is something like what happens at the moment with tests for spina bifida and amniocentesis, that’s what the implication is, and I don’t think that such a thing is likely be found, it’s a much more complex problem than that.”

When asked to clarify his previous statement that there could be some ‘benefits’ of prenatal tests, Prof. Simon Baron-Cohen, Director of the Autism Research Centre commented:

“I suppose I was flagging up that, you know, there might be two different reasons why they were doing that, why that test was being developed. One might be, if you want, the termination of the pregnancy, like they do for, say, Down’s Syndrome. It, it can be used that way. But a diff– , a very different sort of use might be towards early identification, so that you could start intervention at an even earlier point”. 

In an interview published at a later date with the Guardian, Simon – who is also a Vice President of the National Autistic Society – made the following comments: “A prenatal test that is used to make a decision to terminate a pregnancy could effectively be a form of eugenics. A prenatal test that is used for early detection, with a view to starting intervention in early postnatal life may be less ethically contentious, and would need to be evaluated for its benefits.”

Opinion

It is concerning that Mark – via the NAS Press Office – requested his original response to prenatal and pre-pregnancy testing for autism be revised to discuss the ‘potential’ of ‘early screening’ as this wording will be no accident.

It shouldn’t be overlooked that only 2.5% of the NAS membership are autistic adults and around 97% of NAS members are the parents of autistic children.

My personal view is that the statement might have been subsequently revised to ‘leave the door open’ for the NAS to endorse the use of such tests in the future – if they think it is something their parent membership will want.

Much like the debate on the NAS language survey in part four of this series of interviews, the NAS have got a choice to make:

1) Do they act on behalf of autistic people and try and protect the future autistic population from being subject to such tests

Or

2) Do they act on behalf of their parent membership and ‘leave the door open’ for these members to use the tests if and when such tests are introduced in the UK?

Whilst the divided results from the language survey resulted in the NAS saying they would ‘use different terms when communicating with different groups’, unfortunately that approach is not going to work with the topic of prenatal and pre-pregnancy testing because there is no middle ground.

Either the NAS endorse the use of these tests because they see some ‘potential’ in them and become complicit in the devastating impact this will have on the future autistic population – or – they take a stand against the introduction of these tests and use their political clout to get the government to consider the introduction of legislation to prevent these tests from being marketed in the UK.

The NAS Position

Below are extracts from the correspondence I had with Louisa Mullan, Media Relations Manager at the NAS around the topic of the NAS establishing a formal position on the subject of prenatal and/or pre-pregnancy testing:

Louisa: “Thank you for getting back to us. Just to explain further, the public and media responses we issue all the time are based on our established position statements and in line with the charity’s vision, mission and values. There are formal processes for establishing a new position statement where new issues arise. This involves consultation, with the final decision resting with the NAS Board of Trustees. With regards to your questions below, we would go through this process if and when there was a serious prospect of and debates about pre-natal screening being introduced. We believe the statement (below) does align with Mark’s response during the interview, as given in the verbatim transcript.

Mark Lever, said: “Pre-natal testing for autism is not, at present, possible. If a test was developed, the NAS would be very actively involved in debates about their use. Screening at an early stage has the potential to improve the quality of life of autistic people so that, for instance, the right environment and education can be put in place as early as possible. However, the idea that people would say, ‘well, have this test and you can abort a baby if you think it might be autistic’, that is completely alien to us and completely against everything that we stand for –I’m absolutely clear on that.”

Lydia: Thank you for the update.

As I’ve only sent you part of the transcript I appreciate it wasn’t made clear that the statement from Mark took place following a discussion around the development of a pre-pregnancy test for autism which is scheduled to be released this year.

The MAR test is being marketed by a company called Paediatric Bioscience as a way for women to test for a form of autism as a ‘family planning tool’ so that they can make the decision to avoid having children if they wish to avoid having an autistic child.

There was an article on TIME.com in 2013 following the trials of the test which said:

“Some women in the study who were informed of their antibody status have already decided against having further children.” TIME.com

Here is the link: http://healthland.time.com/2013/07/09/mothers-antibodies-may-explain-a-quarter-of-autism-cases/

Here is the original news item announcing the plans for launch this year:

http://www.utsandiego.com/news/2015/jan/15/autism-pediatric-biosciences-antibodies/

Here is a link to the company marketing the MAR test: http://www.pediatricbioscience.com/mar_test/mar_test.html

My website features a summary of the full news debate around this test at: https://amiautistic.com/autism-genetic-tests/

So as you can see the public discussion around this ‘pre-pregnancy’ test has been happening for some years and the test is currently scheduled to be publicly available in the next few months.

I’m afraid in this context it is not enough for the NAS to discuss these types of tests as if they are a ‘future concept’ when a pre-pregnancy test is on its way to market and has already been tested on women who have subsequently decided against having any further children.

If the results from the initial trial of the MAR test were repeated on a larger scale then you can see how this would affect the birth rate of the future autistic population – it would reduce.

Thank you for explaining the consultation process that needs to be completed before the NAS takes a position. You state that the NAS “would go through this process if and when there was a serious prospect of and debates about pre-natal screening being introduced”.

In light of the above information – as there is now clearly a serious prospect of a pre-pregnancy screening test for autism being introduced in the next few months I have clarified my question below:

– As there is now clearly a serious prospect of a pre-pregnancy screening test for autism being introduced into the market, do the NAS commit to starting a formal consultation process to clarify their position on the introduction of pre-pregnancy tests for autism?”

Louisa: Thank you for your email. We can’t commit to a consultation until we find out more for ourselves about what tests are being developed and their implications for autistic people and their families in the UK. But thank you for bringing this information to our attention and we will be following it up.”

The Time to Act is Now

Louisa’s comment that the NAS can’t commit to a consultation until they understand more about the “implications for autistic people and their families in the UK” implies that the NAS will delay taking a position until the US-based test is launched in the UK.

The NAS have a chance to act now, take a position and champion the government to ensure the MAR test and others like it never reach UK shores.

However, Louisa’s comment makes it seem like the NAS are content to ‘sit and wait’ until this test – or one like it – arrives in the UK.

Who decides NAS Policy?

When I discussed this exchange with some of my contacts they started asking the question of who decides NAS policy as it was agreed that the trustees won’t be acting in isolation of the senior NAS management team.

It was also highlighted that the NAS has an internal policy department (headed up by Sarah Lambert, Head of Policy).

Sarah has been ‘noticeable by her absence’ in the discussions with the NAS on their position on testing, although she has previously publicly issued a statement on behalf of the NAS in response to a ‘Hate Crime 10 minute rule Bill’ and just this month made a statement in a major news paper about Microsoft’s plans to hire more autistic people.

As ‘Head of the Policy Department’, Sarah is one of the senior management team at the NAS. Do questions need to be asked of what exactly Sarah and her team are doing in the NAS ‘Policy Department’, if it doesn’t involve formulating a policy on such a critical topic as pre-pregnancy/prenatal testing for autism?

Unless perhaps the policy is to have no policy.

There are no benefits to the autistic person for prenatal or pre-pregnancy testing

I (and others) have discussed the threat from prenatal testing in The Autism Issue of The New Idealist magazine (which can be downloaded free of charge here). I also discuss pre-pregnancy testing in the opening section of my book (which can be read as part of the free preview on Amazon here), and this site is monitoring developments in both prenatal and pre-pregnancy testing for autism here.

Whilst some people may have different views and see some ‘benefits’ to these types of tests I see only a form of modern-day eugenics.

Whilst some people see ‘choice’ – I see a terminal decline in the future autistic population and the world-changing innovations autistic genes bring due to autistic babies being aborted or not conceived at a time when so little is understood about autism.

When the NAS talk about the ‘potential’ of prenatal testing I think of Jan D’Alvise, President and Chief Executive of Pediatric Bioscience cynically referencing the ‘potential’ financial value of the MAR pre-pregnancy test when she stated in an interviewThe blood test addresses a potential $1.8 billion market’

On my way to the interview I knew I was going to ask Mark Lever for his stance on these tests as it is important that the NAS is clear where they stand on this issue.

I didn’t think I was going to get a straightforward response as my belief is the NAS – which was founded by parents of autistic children – will most likely act on behalf of what it thinks the parents of autistic children want as opposed to prioritising the interests of the autistic children themselves.

As a result I was surprised when Mark very passionately spoke of his ‘horror’ at the thought of these tests being introduced and readily committed to starting a formal discussion on the topic of these tests.

However, after the interview – despite Mark’s earlier support – it became clear the NAS now seem determined to resist any requests they take a public stance on the introduction of these tests.

This is not about abortion it’s about eugenics

The debate around prenatal/pre-pregnancy testing for autism is not an abortion debate, it is a eugenics debate – a debate around whether or not society is willing to tolerate the introduction of a test which will see a little understood minority population be subject to potential eradication in a similar way that the Down Syndrome population has faced a quiet extinction since the prenatal test for Downs was introduced.

Much like autism, Down Syndrome is not well understood and even though life expectancy for the Downs population has now increased to an average of the mid-fifties and – as my interview with Randy Lewis in The Autism Issue shows – thanks to improved heart medication many of the Downs population now have jobs and can live independently.

In the interview Randy spoke of a Downs employee in his organisation who even spent many years taking care of her own parents.

With autism, people may not understand that despite the popular public image of the ‘severely disabled non-verbal’ autistic child (an image often promoted by autism charities in the US particularly), any available data on autism will tell you that in reality only a small proportion of the overall autistic population are born with ‘severely disabling autism’.

The latest figures are showing that the percentage of non-verbal autistic people is 25% of the autistic population.

25 years ago that figure was 50%.

The figure of non-verbal autistics has halved because society is recognising the huge number of verbal autistic people who were previously ‘invisible’ in the population.

In The Autism Issue I discussed the ‘invisible autistics’ creating world-changing technology in Silicon Valley with the prominent autistic public speaker and agricultural scientist Dr. Temple Grandin.

The latest figures indicate that the percentage of autistics with severe learning difficulties will continue to fall as the huge number of ‘invisible autistics’ start to become more visible.

In 25 years’ time – if no prenatal or pre-pregnancy test for autism was introduced – that figure will almost certainly have dropped again and in 100 years’ time it could ultimately transpire that only a very, very low percentage of the overall autistic population are non-verbal.

However, if these tests are introduced these figures will be skewed.

Intelligence should be assumed in non-verbal autistics

The fact is that today in 2015, the majority of the autistic population are born without severe learning difficulties and even those who are, are often labelled so simply because they are non-verbal.

Those who are non-verbal are mis-represented as being ‘intellectually disabled’ when improvements to assistive communication for non-verbal autistics has shown this to simply be untrue.

Anthony Kletzander was attending university classes in Irish History and Ido Kedar was ranked with the highest level of academic ability as an honours student at his high school – both have had to battle for their right to an education and both have showed extremely high levels of intelligence previously not recognised in ‘those who don’t speak’ when they were finally given the opportunity to learn and show what they are capable of given the right assistance.

(click here for an amazing news clip of Ido using an iPad to express his thoughts and emotions and here to see a video of Anthony using a light writer as a form of assisted communication).

Whilst many parents would ‘fear’ having an non-verbal autistic child or a verbal autistic child with ‘severe learning difficulties’ – it is truly terrifying to think that some parents would abort or refuse to conceive an autistic child before they understand the full facts about autism.

Decision Time

Even though there is a ‘serious prospect’ of the MAR pre-pregnancy test for autism being introduced into the market, the NAS are dragging their heels on launching a formal consultation to establish their position on these types of tests.

Until the NAS commit to engaging in a formal consultation around the introduction of tests like the MAR test, it is unknown whether the NAS will step forward as ‘The National Autistic Society’ to protect the rights of unborn autistic people or instead become the ‘National Autistic Parents Society’ and decide to defend the choice of parents to abort or not conceive a baby with autistic genes.

As long as the NAS refuse to take a formal public position on the topic – speculation will reign.

The current situation is that the NAS refuse to commit to a formal consultation on the tests – whilst issuing statements that make it clear they see some ‘potential’ in prenatal testing.

Autistic people deserve better than that.

***

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

The final part of this interview series will include round-up of the other topics discussed including the number of senior level employees in the NAS, a discussion around how Mark came to be employed as Chief Executive of the NAS and an assessment of whether the NAS is technically a charity or a ‘charitable business’.

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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Sign up here to register for an update on when the print edition is launched as well as occasional updates on future editions and notification when relevant autism-related news items or features are added to the site.

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