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NeuroAwareness Vlog03: Attention Deficit Hyperactivity Disorder (ADHD)

Here’s my latest vlog in my NeuroAwareness Series and this update is on Attention Deficit Hyperactivity Disorder otherwise known as ADHD.  Comments and questions welcome ! 🙂

 

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Chris’ Song

Some positive news! So, St Andrew’s Autism Centre in Singapore run an annual event for parents and clients. After getting really pumped up from a performance by the Boys Brigade, Chris headed up to the stage, grabbed a mic and started singing, completely on his own! I always thought he’d be too shy to do this, but he just went up there without being asked. I’m so proud of him and I hope to see more of it!

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The Autism Political Correctness Issue

A big issue many people have with is the idea that autism needs to be cured. Let me remind you, autism itself is a social, communicative neurodevelopmental disorder diagnosed purely through behavioural symptoms such as repetitive and ritualistic behaviours that are quite easy to accept in an open-minded society.  It is the co-morbid symptoms that really affect their ability to be seen as typical. These symptoms include epilepsy, depression, anxiety, sleeping abnormalities, sensory issues, Fragile X syndrome, ADHD and intellectual deficits. Do many of these sound familiar? Are there “cures” for them? Yes and yes.  Therefore, we’re not trying to cure their autism but merely the negative co-morbid symptoms!

After reading many posts on autism online, there is evidently a great public dissonance between the idea of accepting their child for who they are and their attempts at trying to improve their behavioural symptoms. It’s not one or the other; you can be both accepting of your child’s autism and also be working hard to find ways to help their symptoms. On the one hand, by improving the negative co-morbid symptoms, you’re also attempting to make them more typical and on the other, you’re trying to soothe their discomfort and show them how much you accept their unique personalities. Remember that weird kid in class? Did you accept them for who they were? That’s great if you did! How about the other kid who always self-harmed? Did you try to help cease their self-destructive behaviour? If it was your own kid you would! Letting them have their own personality is completely different from trying to stop their self-destructive behaviour.

Is it degrading to call someone low or high functioning?

For me, when I say low functioning, I refer to autistic people who cannot live independently, constantly self-harm, have intellectual deficits and cannot communicate well with others. There is no name calling here, just a way to communicate the necessary level of support needed. My family refers to Chris as low functioning, due to his inability to live independently, read and write, and communicate efficiently with us. The fact that Chris can spell and read and few words makes me think that even though he is 22 years old, with the right motivation, he can probably learn to read and write properly at some point. He is verbal although it is in broken English and I personally think he still has it in there. True, sometimes I think the label “low functioning” is unfair because I feel like he hasn’t been given the right interventions yet. But realistically, at this point in time, he is on the lower scale of the spectrum and needs a lot more support from us.

I’ve also seen many posts calling for Neurodiversity now, which is absolutely brilliant! However, there is no need to get so carried away with being politically correct all the time. It is difficult to be politically correct all the time. Everyone has opinions, whether they are right or wrong, it is up to all of us to politely educate them to look at broader perspectives. Autism is an incredibly heterogeneous disorder (and yes, some people don’t want it to be called a disorder… boy do I know…) and if I look at my brother it is anything but a disorder in clinical terms.

We have come a long way from calling autistics retarded, stupid and insane. While society has moved away from such name-calling, we still have a long way to go before everyone can actually feel included. For this to happen, it is important for everyone to get educated about Neurodiversity and learn how to engage with people with social and communicative difficulties.

#StopFightingStartEducating

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Why Are Less Girls Diagnosed with Autism?

Less girls than boys are diagnosed with ASD, but is there also a difference in behavioural symptoms that could lead to under diagnosis?

The ratio of boys and girls with autism is 4:1. However, when it comes to high functioning autism like Aspergers, it goes up to 7:1 What exactly is going on here?

Having a brother with autism, I’ve actually never thought that there might be a difference between boys and girls with the condition. As I found out, there are quite a few disparities:

Girls with high functioning autism are actually quite good at hiding symptoms and mask it by emulating normal social behaviour. In our society, girls are expected to be more social than boys making it difficult for some to cope and they may end up getting into trouble. This could also mean they try harder to conform to this ideal, making it less obvious to pin-point symptoms- especially as anti-social behaviour is a well-known symptom of autism. They show intense interests in fiction and have a rich imagination, often delving into their own worlds. Girls with autism are also more likely to have other mental health problems caused by the masking process (Yaull-Smith, 2008). I remember reading somewhere about a woman who was finally diagnosed with Autism in her 30s while for her whole life she believed she was suffering from depression instead. 

Paul Lipkin (2014) wrote that girls with Aspergers or Pervasive Developmental Disorder (PDD), were diagnosed later than boys. This is because boys demonstrate more obvious behavioural symptoms than girls such as hand flapping and repetition. As mentioned above, girls will appear more social due to the fact that neuro-typical girls the same age are more accommodating of their behaviour and include them more in their circles. Boys the same age don’t usually do this although. This may be one of the reasons leading to delayed diagnosis and sometimes are not noticed at all.

The diagnostic system for autism may well already be gender-biased because of how difficult it is to identify females with autism. Hans Asperger (1944), who first wrote about the symptoms of autism and the Extreme Male Brain Theory, said himself that ‘the autistic personality is an extreme variant of male intelligence.’ He mentioned that he had never met a girl with autism. Many studies following his theories have found that typically developing boys were better than girls at systemising, which is being analytical and the ability to predict behaviour of systems. Girls on the other hand are generally better at empathising.

Perhaps the ratio of girls to boys with high functioning autism is not as accurate as the ratio between girls and boys with severe forms of autism entirely because of the current diagnostic schedule. Judith Gould and Jacqui Ashton Smith (2011) argued that by only utilising narrowed definitions set by a checklist, a lot of diagnoses are missed out. As autism is purely a behavioural-based diagnosis, clinicians must take the time to collect information assess the patients profile directly.

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Autism and Vaccines? Correlation is not Causation

One of the most deeply controversial claims in regards to the cause of Autism is where it is assumed that MMR vaccinations cause ASD.

A paper published in 1998 by Andrew Wakefield and co-authors claimed there was a connection between ASD and MMR. It was based on a sample of 12 children who were admitted for gastrointestinal issues at a hospital in London. The study claimed that the initial symptoms of ASD appeared in all children within 2 weeks of getting vaccinated along with a combination of inflammatory bowel diseases. If true this claim holds big moral implications. The temporal connection of diagnosis and injection was enough to spawn a massive and uninformed Anti-Vaccine movement. Why is this study so controversial then?

After several years of vigorous investigation, Brian Deer, an investigative journalist, put together an extensive report that ultimately stripped Wakefield of his medical licence. Deer found many flaws and misleading assumptions surrounding the study. He exposed Wakefield’s connection with a law firm intent on suing MMR vaccine manufacturers. The law firm funded his scientific investigation, questioning his motives for the study. An extract from Deer’s original website explains the transaction in more detail:

“Barr [the lawyer] paid the doctor with money from the UK legal aid fund: run by the government to give poorer people access to justice. Wakefield charged at the extraordinary rate of £150 an hour …These hourly fees – revealed in The Sunday Times in December 2006 – gave the doctor a direct personal, but undeclared, financial interest in his research claims: totalling more than eight times his reported annual salary and creating an incentive not only for him to launch the alarm, but to keep it going for as long as possible.”

http://briandeer.com/mmr/lancet-summary.htm

Additionally, Deer hunted down the families of the 12 children from the study and realised that the parents fell prey to false memories and altered evidence. The children were hired through Anti-MMR campaigners and their parents were allegedly contacts with Barr himself. When interviewing these parents he found that they had already noticed abnormal symptoms prior to the vaccination and some children didn’t have Autistic symptoms a few months after the investigation after all. To top it off, even with bigger sample sizes, consequent studies were unable to replicate the results of Wakefield’s original study.

As a result of this study, of which news spread widely through UK and US, a number of parents stopped having their children vaccinated in fear of their kids becoming Autistic. Consequently, in 2013 a large incidence of measles broke out in Swansea, Wales. About 1,200 cases were reported including one death. It was noted that parents refused immunisation and a common reason was that they were worried about the link with Autism. It comes as no surprise as after the paper was published more than 10 years ago, MMR immunisations fell from 94% to 67.5% in Swansea. 

Desperate parents are eager to find the cause of any abnormalities seen in their kids, and who can blame them. Because Autism is usually diagnosed around the time the MMR injection is given at about 2 years old (first dose), it is easy to see why they would match two and two together. Even mum believed this at first, although Chris was diagnosed later at 4. She already knew he was different the day he was born but that didn’t stop her from almost believing their could be a connection to the vaccines. To add to the complication, the prevalence of ASD around the world has shown huge increases. In the 1970s (also around the time the MMR vaccine was introduced), an estimated1 in 2000 were diagnosed with ASD and now it is 1 in 100. Census figures in UK state a 1.1% prevalence rate. Has the MMR injections increased the prevalence of Autism?

Over the years, diagnosis for Autism has broadened to include more behavioural traits as seen in Autism Diagnostic and Observation Schedule (ADOS) and other diagnostic methods. The DSM-V now includes Aspergers in the Autism Spectrum. This broader diagnosis would inevitably show increased prevalence as more individuals are identified with the symptoms. Therefore, we can’t assume that increased prevalence means increased incidence. As Autism is on a spectrum of behaviours, it is likely that the incidence rate has remained the same throughout global populations. I’ve added a bell curve below to demonstrate this. 

Bell Curve to show how a more inclusive diagnosis can cause higher prevalence.

Bell curve to show how a more inclusive diagnosis can cause higher prevalence.

Getting the right information out their can mean life or death, please vaccinate your kids.

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Autistic symptoms may not be culturally ubiquitous

Having lived in both Singapore and England, it’s hard not to notice how different people in both countries are when it comes to personality and work ethic. Growing up in an Asian country, Maths and Science were the more important subjects to learn while Art and Drama remained nearly irrelevant in our development. Their curriculum is more memory and exam based while western curriculum concentrates on building character and imagination. Both types of curriculum definitely have their benefits and neither are better than the other.

However, one of the things I found difficult coping with when I was younger and when I moved to England for University was socialising. It could be due to my schooling , or partly due to being a sibling of one with ASD, who knows, but I definitely had found it hard to communicate with others at first, especially with a more open atmosphere, where everyone was encouraged to socialise more at university. Eventually, perhaps because of the environment I was in, I learned to socialise better and come out of my quiet personality. This is because, being a neurotypical, I suppose I am able to adapt.

My experience of both curricula has led me to wonder how differences in culture can affect the diagnosis of ASD, so I googled it-

Freeth and colleagues (2013)1 found that Indian and Malaysian students had higher Autism Spectrum Quotient (AQ) scores compared to UK students. They suggested that particular questions in the AQ are interpreted differently. From these results it seems that people from Asian countries possess more ASD traits than western populations. We must note though, these traits are valued in these societies, as they can be seen to have a focused  mindset on work.

It is culturally acceptable and polite for most Asian cultures to be more reserved. Also  certain numbers in Mandarin are a sign of good luck such as 8(八), while number 4(四)sounds like death(死)which is a bad omen. This makes them score higher on AQ questions such as “I usually notice car numbers and/or similar strings of information”.  (If you’re curious, you can take the test yourself by clicking the link at the bottom of this post).  This definitely implicates the idea that there could be more autistic traits in Asia, as it is merely down to cultural norms.

Unfortunately this opens more questions! Where do we draw the line at what really is an Autistic trait and what is just a typical personality trait? According to a global survey 2, the prevalence of ASD is much lower in eastern countries. The reasons are double-edged: over-diagnosis in the West and under-diagnosis in the East. In some areas in Asia, mental disorders are still taboo and people are reluctant to get their children diagnosed. I notice this happening in Singapore, especially when people directly stare at my brother in disgust.

In any case, current ideas of Autistic symptoms definitely lead me to the conclusion that the symptoms may not be universal around the world.

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Link to AQ questionnaire

http://archive.wired.com/wired/archive/9.12/aqtest.html

References

1) Freeth, M., Sheppard, E., Ramachandran, R., & Milne, E. (2013). A cross-cultural comparison of autistic traits in the UK, India and Malaysia. Journal of autism and developmental disorders, 43(11), 2569-2583.

2)  http://sfari.org/news-and-opinion/news/2011/researchers-track-down-autism-rates-across-the-globe