What happens if we do pre-natal tests for Autism? Neurodiversity, autistic culture, advocacy and the spectrum.
It looks like pre-natal tests for autism may be on the horizon. These scare the hell out of me, for many reasons, but principally because the implications of potentially losing people on the autistic spectrum means a great loss to society.
Pre-natal tests could prove helpful for parents of the autistic community, where they are used to detect autistic traits early, and in turn could lead to better early intervention measures.
Early interventions for those on the autistic spectrum can ameliorate the disabling aspects of the disorder whilst developing on the positive aspects of being non-‘neurotypical’.
Terms like ‘high-functioning’, ‘neurotypical’ and others which focus on the disabilities of autism fail to take into account the ‘difference’ that Prof Baron-Cohen discusses in the comment below:
I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition. Nobody would dispute the place for interventions that alleviate areas of difficulty, while leaving the areas of strength untouched. But to talk about a ‘cure for autism’ is a sledge-hammer approach and the fear would be that in the process of alleviating the areas of difficulty, the qualities that are special – such as the remarkable attention to detail, and the ability to concentrate for long periods on a small topic in depth – would be lost. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference.
I discuss Autism Rights and Autism Advocacy at some length (though not as much as I’d like to) in my Autism Talks series that I am still giving around the country for Skeptics in the Pub. More on that here: www.tannice.co.uk/public-speaking/
Professor Baron-Cohen makes some fascinating comments in the comment piece that inspired this post, firstly;
“The whole ethos behind medicine is to do no harm and if the test is only 80% accurate, it means a proportion of people will be told they have the condition when they don’t, so you’ve raised anxieties unnecessarily. Equally if the test is missing people, then they’ll be going away thinking I’m fine when they could be getting support.”
Screening for any illness means that there is a risk of both over- and under-diagnosing potential issues. This is common throughout medicine in the cases of Cervical Cancer* as well as Prostate Cancer (PSA tests), Breast Cancer, Colorectal and other disease screening that takes place on what Dr Margaret McCartney (and other doctors) refer to as the ‘worried well’. Dr McCartney also has views on charity and pharmaceutical industry interests with respect to screening, as well as private health screening, which is another topic entirely, not for this post.
There is a problem currently with diagnosis of Autism in the UK, since there are all kinds of reasons that someone might (a) want a diagnosis (as an adult, for themselves OR for their child) as well as (b) need a diagnosis (e.g. to receive extra help at school or for disability rights protection in the workplace). I’ll touch on this again later on.
‘But Autism rates are going up and up, what are we to do?’
Much was made of CDC figures that were released at the end of March 2014 stating 1 in 68 children in the US have been identified with ASD (Autism Spectrum Disorder). At 30% higher than the last set of data, of 1 in 88, published in 2008, you’d be forgiven for thinking something external MUST be causing Autism. But I (and the majority of medical professionals in the field would agree with me) know there’s little evidence for those conspiracy theories and it’s just not that simple.
— Tannice (@Tannice_) March 28, 2014
There are all kinds of issues with comparing rates of diagnosis for anything as we refine what we know about medicine and psychiatry through advances in detection. With respect to Autism, we should look at diagnosis criteria, political pressure and stigma – all major factors in the apparent rise in prevalence. Is it a true rise? Are ‘more kids getting Autism’ as some alternative medicine practitioners and anti-vaccination advocates were tweeting back in March? Or do more doctors understand Autism; are more parents willing to ask for a diagnosis because they understand it better and recognise it more often as time rolls on? Are more positive role models for Autism than ‘Rain Man’ emerging (don’t get me started on Rain Man), increasing people’s awareness of the ‘difference’ rather than the ‘disability’?
— Tannice (@Tannice_) March 28, 2014
— Tannice (@Tannice_) April 12, 2014
Results from my 2012 survey – some think very odd things cause Autism pic.twitter.com/TlFVt0g2sW
— Tannice (@Tannice_) March 28, 2014
So we’re back to the issue of diagnosis again. Many parents struggle with getting a diagnosis, despite the fact that we can have reliable diagnosis at 6 months of age (take that, people who say vaccines cause Autism!). Most parents notice at least some signs of autism before 12 months of age (another one in the arm for those anti-vaxxers, when MMR happens at 13 months of age).
“Speech disrupts facial attention in 6-month-old infants who later develop autism” Recent study on early diagnosis (Feb 2014)
“Early signs of autism can be detected in 6-month-old infants, suggested a National Institute of Mental Health (NIMH)–supported study published online this January in Biological Psychiatry.” Source
“Don’t ‘label’ your kids!”
“Why label a child?” is a common question that’s posed to me during the Q&A session of my Autism Talks. Because a label helps us identify where we can be of help and without one for a child (some people refer to this as ‘statementing’), your Local Education Authority simply won’t give you the financial help that you need. That’s why we need ‘labels’.
This is the other thing – no one complains about being labeled ‘a person with cancer’ because they recognise that the diagnosis gives you the treatment that you need. Why use the stigmatising idea of ‘labels’ if you’re so frightened about the stigmatising effects of labels in the first place? I digress…
Why use the stigmatising idea of ‘labels’ if you’re so frightened about the stigmatising effects of labels in the first place? I digress…
So it could be that in some cases, medical professionals err on the side of caution with diagnosis in order to get kids the help they need.
So what of adult diagnosis?
It doesn’t just rest on biology, it also rests on how well you’re coping,” Baron-Cohen says. “One of the criteria for a diagnosis in psychiatry is that the symptoms are interfering with your everyday life. If you have high-functioning autism, you may well have a lot of autistic traits but if you’ve got a particular lifestyle where it’s possibly an advantage to be leading a solitary lifestyle and be quite obsessive, you’re clearly able to function and maybe even make valuable contributions in your work, so arguably you don’t need a diagnosis.”
I couldn’t put the above better myself. Many adults come to me after my talk asking me about diagnosis as an adult. They say that they believe they have autistic traits and we chat for a while and I ask them to consider how a diagnosis might help them. Sometimes it’s simply validation of something they hadn’t understood about themselves and the difficulties they have experienced, but most of them are working adults who have managed to reach an age of independence and so they are not in need of a massive amount of help. For some of them, a ‘label’ might help them in employment for diability rights discrimination due to behavior they and their employer didn’t previously understand, for some it might not help at all.
“The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80% likelihood of autism and so once the baby’s born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioural approach,” Baron-Cohen says.
“That would mean that there were no potential side effects and you might be able to intervene at a much younger age. So from an ethical point of view, if there was a screening test, using it for early intervention via a psychological approach would be quite risk-free and could carry a lot of benefit.”
Pre-natal testing could be amazing and helpful, for the reasons Baron-Cohen posits above. It could be awful, were it to be used to give parents the option, as they have with Down’s Syndrome, to terminate a pregnancy.
To put things into context:
92% of pregnancies in England and Wales that receive a diagnosis of Down’s Syndrome are aborted (figures from 1998). This proportion has not changed since 1989, when Pre-natal testing was introduced. However, there is evidence that changing parental attitudes mean more babies with Down’s Syndrome are being born.
Baron-Cohen is optimistic because I believe that a great number of people would like to see a pre-natal screening to eliminate Autism entirely. There are parents out there who simply want the child that they’d imagined. They imagine their child is, if you could remove the Autism, another person screaming to get out. And I think they’re wrong. Not only do I think they are wrong, I think they are undergoing a grieving process they may never resolve.
Autism, I believe, is a core part of the person who has it. You remove it and you remove them. It is part of their way of living – their ‘difference’ that Baron-Cohen means when he says ‘Autism is both a disability and a difference’. And their difference is our gain.
We’re already starting to see fruit from the Autism Advocacy movement and large companies are giving jobs to people on the spectrum, figuring out that an ASD way of thinking is pretty awesome when harnessed.
A pilot, carried out at SAP Labs in India found that the teams with ASD members saw measureable productivity gains.
And, according to SAP’s global head of HR, Luisa Delgado, there is a strategic reason for hiring people with ASD. Innovation, she says, often comes “from the edges”.
YES, those with work-related capabilities may be ‘high-functioning’ (I hate this ‘othering’ terminology, but it’s the term that most understand the best), but I think we can get closer to a point where everyone on the spectrum lives what anyone would understand is a good life. I advocate for help for people on the spectrum who are struggling to care for themselves, lead an independent life and self-advocate. I believe they will have a better life if we can help them early. Not, as one critic of mine has said, ‘make them fit in’. No. Not to make young ASD individuals fit in to a neurotypical way of thinking – to make them like ‘us’ (again, that othering, tribalistic terminology) – but to help that individual to succeed and teach me (us) things about the word that I, as a damn neurotypical, just can’t see.
I’ll end with a quote from Temple Grandin (who has her own set of views with regards to all Autism Rights and Advocacy Movement issues).
“Since writing Thinking in Pictures, which described my visual way of thinking, I have gained further insights into how my thought processes are different when compared to those of people who think in language.”
“I am often asked, “How can you be effective at public speaking when you think in pictures that are like video tapes in your imagination?”
“It is almost as though I have two levels of consciousness that operate separately. Only by interviewing people did I learn that many of them think primarily in words, and that their thoughts are linked to emotion. In my brain, words act as a narrator for the visual images in my imagination. I can see the pictures in my memory files.”
“When I lecture, the language itself is mostly “downloaded” out of memory from files that are like tape recordings. I use slides or notes to trigger opening the different files.”
When I am talking about something for the first time, I look at the visual images on the “computer monitor” in my imagination, then the language part of me describes those images. After I have given the lecture several times, the new material in language is switched over into “audio tape-recording files.” When I was in high school, other kids called me “tape recorder.”
A Web browser finds specific words; by analogy, my mind looks for picture memories that are associated with a word. It can also go off on a tangent in the same way as a Web browser.
Non-autistic people seem to have a whole upper layer of verbal thinking that is merged with their emotions. By contrast, unless I panic, I use logic to make all decisions; my thinking can be done independently of emotion.
In fact, I seem to lack a higher consciousness composed of abstract verbal thoughts that are merged with emotion. Researchers have learned that people with autism have a decreased metabolism in the area in the frontal cortex that connects the brain’s emotional centers with higher thinking (the anterior cingulate). The frontal cortex is the brain’s senior executive like the CEO of a corporation. Brain scans indicate that people with autism use problem-solving circuits in social situations. Unlike non-autistic people, the emotion center in their amygdala is not activated, for example, when they judge expressions in another person’s eyes.
*(I discussed Cervical Cancer at length on this website two years ago and have revised my opinion since, as a result of comments and Dr Margaret McCartney’s subsequent articles and book ‘The Patient Paradox’. It’s a subject a little too close to home for me to re-examine on my blog at present and I accept I may not being my usual skeptic self when thinking about it. It’s been in the news of late because of a young lady, Sophie Jones, who died of cervical cancer. She was under the current age of the UK Cervical Smear test (25). Today brings news that cervical cancer screening is to be discussed in parliament. This is an entirely different issue as screening and illness diagnosis are two different things)