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How Self-Aware are People with Autism?

This question has always bugged me.

I’ve always wondered whether Chris knew about his Autism Spectrum Disorder (ASD). I have asked; he just replies with vague mumbles or changes the subject. What’s interesting though is that whenever he overhears someone talking about his condition saying he is stupid or dumb, he starts getting agitated and cross with everyone. Either he understands people are talking about him and he hates that its about his condition or it’s because he thinks he’s in trouble for something again. Call it Big Sister intuition, but I believe he has a vague idea about his condition mainly due to the fact that I have observed how upset he gets when he can’t do something- out of frustration he will cut the strings on his guitar because he isn’t capable of the proper motor coordination needed to play chords. Also, I believe he doesn’t care (or can’t) that much about it either, as he has never been able to think about himself in relation to other people.

As you’d expect, low-functioning individuals, who have more severe ASD traits, are likely to be less self-aware of their condition compared high-functioning individuals. Michael Lombardo and Simon Baron-Cohen, who both studied self awareness extensively in ASD, mentioned in a study that ASD individuals with more self-awareness had better mentalising skills and less autistic traits, indicating a relationship between self-awareness and ASD impairments

Now we get down to the deeper stuff!

Baron-Cohen and Lombardo (2010) described how the Self in ASD is in paradox. ASDs are both egocentric and self-awareness impaired at the same time! Individuals with ASD often do not understand the “Duality of Self” which is how we can understand how we are similar yet distinct from others at the same time. When asked, individuals with ASD will not immediately represent themselves in relation to others in a social situation. They have a hard time understanding that they are similar to another. They are unable to perceive how another will feel about a situation. They lack Theory of Mind. However, sometimes if you simulate another’s experience through their own, they may be able to understand, especially if that other person is similar in a way to them. I interpret this in terms of my brother being more comfortable with male strangers around his height.

Physiologically, it is found that the ventro-Medial Prefrontal Cortex (v-MPFC) and Medial Prefrontal Cortex is implicated in self awareness. Neuro-typicals, when confronted with self-reflective questions will have higher activity in the v-MPFC and MCC, whereas in ASD the results are atypical. Additionally, Lombardo (2009) found that in a mentalising context, ASD individuals with higher self-awareness were less socially impaired and vice versa for ASD individuals with lower self-awareness.

As I am unable to mind-read, there is just absolutely no possibility of me ever understanding what goes on my dear brother’s head, whilst he cackles to himself drawing toilet bowls. Repetitively.  Have a look below at Christopher’s masterpiece! You can download it as wallpaper for free. I did! ❤

Artist:Chris.

Artist: Christopher.

Read Baron-Cohen and Lombardo’s paper here

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Assistive Tech for Autism

After some research I noticed that there are in fact many new ways to help individuals with ASD (Autism Spectrum Disorder) cope and function better by using technology. We are in an age where all kinds of technology is easily accessible, with touch screens being extremely portable and the millions of apps to choose from to entertain and aid users in everyday tasks. There are a lot more options to help teach life skills and assist cognitive development in people with learning disabilities than before. This is especially helpful when parents or carers cannot be by their side 24/7.

Researchers at Monash University  developed tablet technology specifically to aid children with developmental disabilities like autism and Down Syndrome. Cornish (2015) did a study on 77 children with learning disabilities, providing them with teaching intervention using this tablet tech. They found improved cognitive attention and numeracy skills. She mentioned that as there are many apps out there claiming to help improve learning development, it is extremely hard to measure their effectiveness especially as none of them have been clinically tested. Still it is worth a try sometimes if you could find free or cheaper apps out there. Many parents and teachers have recommended using tablet apps to aid these children.

There are two purposes for these tech supports. One is for Alternative and Augmentative communication (AAC) and second is a motivating tool for increased independence. These two purposes help guide the development for particular apps. Here are a few apps I’ve discovered that piqued my interest in terms of aiding ASD:

Proloquo2go

Proloquo2go is AssitiveWare’s flagship product. The company was started by David Niemeijer after his friend became paralysed and needed the use of an on screen keyboard. The app itself is a symbol-based communication program designed to improve communication and language skills in children and adults with learning disabilities. It is said to accommodate a wide range of motor visual and cognitive skills. In the app you can customise buttons with 20,000 symbols and use your own photos. I do like the sound of this app and would definitely like to try it out on Chris. My worry is that he would treat it like a toy instead as he is 21 now and has mostly associated tablets as a form of play. 

Proloquo2go has otherwise won lots of praise for its ability to improve cognitive and social development in ASD. A study done by Kasari and co. (2009) found that autistic children undergoing speech therapy alongside the use of the tablet app had doubled the amount of vocabulary in 3 months. They also found that the earlier the tablet intervention was given the faster their learning progress.

The below video demonstrates how the app is used in the classroom:

Brain in Hand

Brain In Hand is an excellent new personal assistive technology that promotes independence individuals who others need constant assistance. It is an app that helps people write down situations where they have difficulties and plan solutions in advance to minimise stress and anxiety. The app even monitors mood and provides solutions to help alleviate their stress or alert the user’s person of choice to get in touch with them immediately. The brains behind the app are a team of researchers based in Exeter UK, including David Fry who is going to be speaking at Autech 2015 in Manchester this October (more info below). They originally intended for the app to assist ASD and have since extended its use for other users who have had brain injuries, other learning difficulties or mental health issues such as anxiety. This is a great app for ASD individuals with a higher degree of independence. Have a look at the video on the front page of their website if your are curious about how it works. 

BrainInHand link

First Then Visual Schedule App

First Then App (First Then App, by Good Karma Apps)

Similar to the previous Brain in Hand app,with it being a personal schedule maker, but would be more helpful for lower functioning ASD like Chris. It is a positive behavioural app that generates user created audio and visual cues of routines and transitions in order to improve independence and reduce anxiety. It is more affordable than the previous two apps and easy to use. It would definitely be a good replacement for the physical card prompts usually used in ASD classes. If Chris had it all the time I assume he’d stop having as many meltdowns as he does now as this would keep him busy and satisfied about his routines. I’m definitely going to try it out with him when I go back home. It would be very useful for anyone who likes repetition. 

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There are hundreds of apps out there to assist people with developmental disorders, however, choosing them may be difficult. Before this I had no idea apps like this even existed. Giving some time to research the usefulness of these apps would be a great idea before buying any of them as you could end up with bogus apps that haven’t been clinically proven to improve anything except the ability to press buttons!

So, Chris is a young adult now who still needs guidance in everyday tasks and has poor numeracy and reading skills, but I believe we can still get him to improve skills with further dedication. My goal, or should I say dream, is for him to be able to read one day!

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Autech 2015

I mentioned Autech 2015 earlier. This is an autism and assistive technology conference being held at Old Trafford, Manchester. Tickets cost from £175 and the event takes place on the 1st of October 2015. The conference will feature speakers such as Olga Bogdashina (Co-founder and lecturer and the International Autism Institute, David Fry (Brain in Hand), Yvonne Crowhurst and Yvonne Smith (Wirral Autistic Society) and many more. I would like to go but the tickets are a bit pricey for me at the moment. Technology will let me ready about it instead at least 🙂

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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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Hello There!

This is a personal and hopefully educational blog for anyone curious about what it’s like living with someone with autism and also about autism research in general. I’ll post summaries and my own opinions about new and old papers. My passion stems from having grown up with my brother, Chris, who has the condition and whom I think is a very curious individual.

Comments are welcome! Enjoy Elevatopher! 🙂

Hello! :)