Autism Spectrum Disorder (ASD) – The Misunderstood and the Brilliant

Language has never been my forte, the clarity, the structure and expression have always evaded me. I remember when I moved to Peshawar for better education, to live with my Nan, away from my nuclear family who lived in Swat. I was transitioning, from a town to a city, a transition of complexities in education and my biggest challenge the language. In a nutshell, a massive change. 

I used to struggle, to read, to comprehend and it didn’t just become a barrier in learning but also in social interactions plus I became a subject of ridicule. I felt encaged, captivated, unable to convey myself, my thought process crumbled and resulted in a few physical altercations due to misunderstandings and misinterpretations. It improved but it took time.

I still remember my amazing English teacher, Late Colonel Samdani, he was our House Master, in the first few months, out of the blue he made me the Deputy Captain of our House – Al Haytham – named after a famous Islamic scientist , mathematician and an Astronomer, also known as the Father of Modern Optics.

Late Colonel Samdani had an amazing grasp on the language, an influencing dialect and inspired us all especially me to write, read and speak what we have written. In no time I was part of the debating club. His wife, Mrs Samdani used to run a non-profit organization in the University Town.

I remember on one of our school visits, we were taken to the facility, it was only then I realised that it was a facility for the Intellectually disabled with Autism now called the autism spectrum disorder. They despite all the constraints were trying to take care of those children and trying to bring them back to the mainstream. That was my first experience hearing and seeing kids with ASD.  

Fast forward 18 years, I had started my Core training in Lincoln in 2005; My Educational supervisor called me to his office one day and asked me to review a patient with a Formal diagnosis of Asperger's syndrome, he asked me to read about it first and then review the patient. I obliged. I was fascinated to read and discover the condition, what baffled me was their ability to focus on a certain thing they liked and how they perceived the world. That was when I became fully invested in this fascinated area of mental health. 6 years from then I pioneered the first adult ASD service in Trafford, Manchester. 

As I was getting trained, I came across certain theories about ASD, which I researched thoroughly, however it turns out to be sheer myths. 

Myths about ASD

There are some common Myths about ASD

Confusion about the Nomenclature

What is the difference between Autism and Asperger’s syndrome? what is High functioning ASD? Non-specific autism? this confusion has lingered on for years till they came out with the Umbrella term Autism Spectrum Disorder (ASD). ASD encompasses the range of severities of symptoms within it. ASD terminology became more prevalent after the DSM-V, with the broadening of the criteria for ASD after DSM IV, the intellectual disability was noticed to have declined in the cohort. 

ASD is an Illness and its rare

It’s not an illness. It’s a neurodevelopmental disorder. It was considered a rarity i.e. 4/10,000 however with a better skill set, understanding and new services, it now stands on 1 in 59 people. 

ASD happens only in Males

There is a high prevalence of ASD in Males. The male to female ratio varies from 4-5:1, however, the reason for this chiasm is the masking effect in females. Females are good at acquiring social skills that make it difficult to diagnose them with ASD. In really this chiasm is way less.

MMR and ASD

In 1998, a study appeared in The Lancet, claiming that the measles-mumps-rubella (MMR)  vaccine caused autism in 12 children. Despite the small study sample, it got published. The study stirred fear and controversy amongst the parents and physicians and caused a ripple effect that remains even now. It’s called the Wakefield study, done by a physician based in London.

Later the study was found fraudulent and was retracted in 2010 however the aftermaths still persist. There were two big studies done one in the UK, scientists from Guy's Hospital in London, Manchester University and the Health Protection Agency, analysed 250 children, it was published in 2008.

The other study was conducted by researchers from Statens Serum Institute, the University of Copenhagen in Denmark, and Stanford University School of Medicine in the US. It looked at a sample of 650,000 children.

Both studies refuted the claim made by the Wakefield study. So please have no doubts, have your children vaccinated and do not miss the MMR schedule. There have been mini outbreaks in the UK, in 2018 alone there were 913 laboratory-confirmed cases of Measles. 

Bad Parenting

ASD is not an outcome of bad parenting. Kids with ASD are misunderstood. They have a way of seeing things, they see the world with a different Looking glass. They are misperceived and misinterpreted. They are concrete thinkers, for them, grey areas do not exist. They feel odd, alienated, misunderstood which impacts on their self-esteem. Their aggression has a reason, they are not violent otherwise. Their behaviour is their form of communication at times and should be understood. 

Considering the poor skillsets and the dearth of services available, they are labelled as badly behaved and naughty at times. In developing countries and sometimes in developed countries too, once a kid is diagnosed with autism, they are expelled from mainstream schools and suggested to enrol in a special school. We lose beautiful minds to the system all the time.

They lack empathy and have no emotions

Those with ASD are very sensitive individuals. They are empathetic however it's difficult for them to pick, understand and interpret emotions. Even if they do, because of the lack of social skills and etiquettes, they do not know how to deal with it.

They have difficulty in picking cues, hence find it difficult to form and maintain boundaries. It is because of their literal thinking that they can’t get jokes and sarcasm and find things amusing that others don’t. 

I was once assessing a teenager and I asked him what does ‘Go break a leg ‘ means, and he replied why would someone ask one to break someone's leg, its painful. On another occasion when I asked a kid to interpret ‘Raining Cats and Dogs,’ she replied but where are the chipmunks and hedgehogs.

All ASDs have Intellectual Disability

With the broadening of the diagnostic criteria, we see very few people with Intellectual disability in ASD. Most people are really bright, and they are amazing at things they are interested in. They are very ‘attention to detail.’ I remember having a conversation with 6 years old about the sketches he made for Dodge and Audi and was very keen to submit it to the companies. It was an amazing piece of art. They are creative but in areas of their own interest.

They can’t form Relationships

Just like anybody they form friendships, they are in romantic relationships and do get married and have children. Just because they struggle in social interactions, doesn’t mean that they don’t acquire those skills, which they do eventually, not naturally ingrained but enough to convey their feelings and thoughts. 

Assessment

Kids with ASD can be diagnosed as early as 2 years of age. The assessment process involves creating ‘a social world ‘for them to observe their interaction, communication, routines and behaviours. It's usually done using a tool called ADOS and then information is obtained from the parents via developmental history and associated history from school. 

Other tools like DISCO can be used instead of ADOS and ADI-R is used for developmental history. The use of an assessment tool is dependent on the organization and the clinician.

The different pieces of information are arranged in a mosaic and then agreed in an MDT whether a person has ASD or not. It takes 6-8 hours on average for a single completion of an assessment.

What happens in ASD

For someone to have ASD, the features are spread over a triad of social communication, social interaction and rigid, repetitive and stereotypical behaviour. 

Social Interaction:There is inconsistent, avoidant eye contact, sometimes no eye contact. Those with ASD are uncomfortable in making eye contact. They tend to look around a person or look through them.

Their facial expression is flat or limited expression. One is unable to make out what they are feeling. Some expression might be learnt that are used inappropriately or are not blended in naturally.

There are no gestures, limited gestures or stereotypical repetitive gestures to aid communication.

They find it difficult to understand social cues, unable to pick emotions and find it difficult to deal with it as well. They do not lack empathy.  They find it difficult to get jokes and sarcasm. They find things amusing that others don’t like if someone trips or fall over, they find it funny contrary to a general consensus.  

They do not have a filter and can blurt things out. During one of the consultations, 7 years old came to me and asked me, ‘Where have your hair gone?’ from the parents perspective, certain situations can be embarrassing.

They have a limited understanding of others personal space, however, are very particular about their personal space. They find it difficult to modulate their behaviour in a different setting. They also have difficulties in sharing.

Communication:

They find it difficult to have a two-way conversation. If the topic is of their interest then they will talk at people, if they are not interested, it will generate brief or monosyllabic responses. They are not into small talk or chit chat, most conversations for them bear a purpose and an outcome.

They are creative in things they are interested in, otherwise, they have limited creativity. 

They have delayed speech; the speech deteriorates during the early years. The narratives from parents suggest that it seems that they mentalize the language and one day they just start speaking. They are referred to Speech and Language therapists. Once the speech develops, they are articulate and most talk like ‘Little professors.’

In certain cases, they create Alien words by clubbing together alphabets or words, they sometimes can create their own language, however, it might be because of lack of articulation of certain words that their language is not comprehended by others.   

They hardly initiate a conversation.

Rigid, Repetitive and Stereotypical behaviours:

Most of them follow a certain routine, one of the teenagers told me that the meal times are 12, 3 and 6 and e.g: if the breakfast finishes at 1 pm or later, the next meal still needs to be at 3 pm even though the person is not hungry.

Change is difficult to accept, their route from home to school or work has to be the same, any change in it will create meltdown or behaviour alterations. In kids, the timetable at school, teachers and schedule has to be made known to them, even subtle changes can provoke anxieties. That is why most presentations of ASD to mental health services are with   Social anxiety and mostly misdiagnosed with an anxiety disorder which in reality is their response to change.

Change has to be explained to them weeks or months in advance.

They are collectors, they can collect anything right from stones, twigs, shells to Pokémon cards, Legos, car models etc. They don’t play with their toys mostly, they love to inspect the toys, organise the toys but hardly play with it. 

They are attention to details about things they are interested in. They are often known to excel in subjects likes Maths and science, one with a logical background.

They can watch things repetitively. They can watch a certain, movie, clip, YouTube video or a song repeatedly 1000s of time without getting bored of it. 

They are very sensory and tactile. Most of them like to feel and smell things. The clothes have to be soft; labels need to be cut, they can wear a certain outfit over and over even if it becomes ragged. Parents sometimes have to hide those outfits from them.

They also are sensitive to certain noises, like someone chewing food, someone writing with a pencil, children crying or very loud noises.

It is also to be understood that not all the features above will be present in everyone with ASD.

Working with kids and adults with ASD

On reflection, it is difficult to be caged, it is difficult to understand why people don’t understand you, why you can’t talk like others, why you are ridiculed,  it creates self-doubt. I have been in this situation once, I used to get frustrated and hit out,   however, I was helped, and I had the skills to come on top earlier in my childhood. Imagine those without skills, abandoned, mocked, bullied for years on end, with limited awareness about what they are going through. 

Working with people with ASD has been a life-changing experience for me. They have very simple and beautiful minds. I have witnessed amazing people with varied talents, I have seen 6 years old sketching like professionals, witnessed them creating cities with Lego pieces, excelling in IT technology, being a recipient of different in-depth and detailed lectures ranging from asbestos to Dinosaurs to World history to space travel to astrophysics.

Their brains are highly absorbent, they are fact finders. Once they are interested in something they will excel in that field. They are known as little professors, they are very articulate at times, very impressive vocabulary and simplistic mindset.

I have seen parents burst into tears because of relief once they are told their child has a diagnosis of ASD. I have never received so many hugs from parents that I have received in the last year of working with children with ASD. Because of the dearth of services, they have waited for years and years for miracles to happen for them.

Parents have heard things being said about themselves and the kids. They have been called Bad parents and the kids naughty. School, colleges and universities do not provide help till the students have a label of ASD, resources are not mobilised till they receive a letter saying that this person has a diagnosis of ASD.

Working ASDs have a different set of issues, they are deemed unsocial, introverts and are placed in noisy environments where they fail to concentrate and excel in their jobs. On the contrary, I have heard (TED talks) that there are organisations who hire people with ASD who can perform at a higher level and provide the environment conducive for their excellence.

I see bright individuals with ASD getting lost to the system. They feel they are on a different planet, where people do not understand them, they question themselves readily. The system does not educate the relevant organization and community, their condition is not picked early, and they continue to struggle.

Our education system is already so stressful, and performance orientated. It is like a conveyer belt which is bent upon producing University goers, not identifying or feeding into their talents; in this world, imagine the conundrum those with ASDs have to face. 

With limited resources, lack of services, poor skill set and less awareness, the future looks bleak however if we take this as a personal responsibility to educate as many as we can, things will change.  I have noticed changes in behaviours and perceptions around me when I have educated my teams, my family, my friends about ASD.

All they need is people around them to understand them. Parents should be equipped with skills to steer them in the right direction, schools, universities and college should provide them with a structured environment and supporting pillars to help in imparting skills.  They will find their niche, they always do.  They will excel, they will be the game-changers, there are so many of them around us who have changed the world for us, all we have to do is look diligently and we will be able to spot them easily. They ought to be understood.