Why I hate the media reporting on Autism research

Why I hate the media reporting on Autism research

Earlier this month, the Daily Mail published a story with an alarming headline: “Women who take paracetamol during pregnancy ‘risk having a child with autism or ADHD'”. Other news outlets picked up the story with similar sounding headlines, The Daily Telegraph went with the more vague “Paracetamol in pregnancy may be linked to autism”, and The Times wrote “Paracetamol during pregnancy linked to autism.” Sounds scary, right? That’s undeniably the intention. That headline grabs the attention of any mother who takes the common painkiller and makes them question their choices. It may make mothers of autistic children consider whether it was their painkiller use during pregnancy that caused their child’s autism. The scariest part of that headline is that it is not remotely based on fact. And it doesn’t have to be, it’s the media.

The news media are the gatekeepers to our scientific information. They control what findings we read about (and the ones we don’t), what information is passed on from the study (and what information is withheld), how the information is presented, and ultimately, how we feel about it. Studies have shown that we change our behaviour after watching health or medical news related stories. History has shown that the media widely reporting on unproven scientific findings and theories has had a damaging impact not only on how autism is publicly perceived, but has had long lasting and damaging repercussions in public health, resulting in the reemergence of deadly infectious diseases that immunisations had nearly wiped out. So why are the media allowed to report scientific studies as fact, when the evidence does not exist?

Let’s go back to the Daily Mail paracetamol article and examine it more closely, so we can find out exactly what we are dealing with. Firstly, let’s compare the headline with the first paragraph of the article. The headline implies the risk is certain, while the first paragraph uses the much less certain “linked to autism and ADHD”. The article goes on to explain that boys whose mother’s took paracetamol  were “more likely to be on the autistic spectrum, while it was associated with higher rates of ADHD in both sexes”. Really? How is that so? Looking at the actual study, it appears that none of the children in the study were actually mentioned as being diagnosed with either disorder. So, how did they make the connection? It turns out they used a series of tests, administered at varying ages. These tests included:

1 Year of Age: Bayley Scales of Infant Development (BSID) – according to the study’s supplemental data,  this test measures neuropsychological development in infants, and was administered by a trained psychologist.

5 Years of Age: Cognitive – McCarthy Scales of Children’s Abilities (MSCA) and Conner’s Kiddie Continuous Performance Test (K-CPT). The MSCA measures cognitive and motor development (of which the scientists found no adverse effects associated with paracetamol use), and the K-CPT is a computerised test that measures attention span, reaction times, accuracy and impulse control. This was where the scientists found that children who were exposed to their mother’s gestational paracetamol use performed worse, compared to the children who were not exposed. However, according to an article published by the UK’s NHS, this link only just reached ‘statistical significance’ (ie: not likely to have occurred by chance alone).

5 Years of Age: Behavioural – California Preschool Social Competence Scale (CPSCS), designed to measure social development, and the Attention Deficit and Hyperactivity Disorder Diagnostic and Statistical Manual of Mental Disorders-IV form list (ADH-DSM-IV form list). Finally! We have an actual diagnostic tool that is used to measure ADHD! Oh, but according to the study, it wasn’t assessed by a doctor or psychiatrist… both of these questionnaires were filled out by the child’s teacher. Well, we were close! The last test administered at this age was the Childhood Autism Spectrum Test (CAST) by a psychologist, however this test is not a formally recognised diagnostic tool, it is only to be used in non-clinical settings to screen for children at risk for Asperger Syndrome and other related Autism Spectrum conditions.

So there are all the tests that the scientists involved in the study administered. Here is where it gets interesting. None of those tests – except one – is actually used as a diagnostic tool for autism or ADHD. And none of them were administered with the intent to diagnose, only as a tool to measure symptoms. Symptoms and an actual diagnosis can be worlds apart – I may have a symptom of cancer, like persistent headaches, this does not mean I have cancer. Also, the scientists never actually state that paracetamol caused these symptoms, only that there was a higher instance of symptoms amongst children who were exposed to paracetamol use. The symptoms literally could have been caused by anything. So why did the media twist it into the fear mongering headlines we saw? Well, I suppose “Higher instance of ADHD and autism related symptoms found amongst children exposed to paracetamol” isn’t going to get as many hits as the headlines they went with.

The important take away from this article: Don’t believe everything you read. Especially if it’s in the media. There are absolutely no controls, rules or policy guiding what they publish, and how they choose to spin it. They have a vested interested in making you read what they publish – that’s how they make their advertising revenue. The more you click, read and share, the more money they make. In the business world, this would be called a conflict of interest – if you have an interest in making someone behave a certain way, and you take actions to cause that behaviour, that is a conflict of interest. Don’t hate the science – science is doing exactly what it is there to do – make hypotheses and test these hypotheses. It is the media who takes the results of these studies and twists them into headlines designed to catch your attention and make you feel something. Because if you feel something, you will read it, you will comment on it, and you will share it.

 

 

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The invisible girls on the Autism Spectrum

The invisible girls on the Autism Spectrum

I recently helped a friend with her niece, who had just been diagnosed with Borderline Personality Disorder. My friend strongly felt that this diagnosis was wrong, and after reading more about my symptoms and experiences with ASD believed that her niece “Anne” (name changed) was actually Autistic. The symptoms were all there – social issues, anxiety, depression, sensory issues, self-harm… the list goes on. After hearing about Anne’s personal experiences, including being bullied at school due to a simple social misunderstanding, I urged my friend to get Anne reassessed for a proper diagnosis. I felt instantly connected to Anne – we both experienced bullying at school due to not fully understanding social rules and etiquette and our inability to “read between the lines”, we both experienced depression, anxiety, self-harmed and were even both diagnosed with BPD… It was as if I was watching teenage me struggling all over again. I felt the pain, the frustration at being misunderstood and the confusion of misunderstanding the world around me.

I followed up with my friend about Anne’s progress about a week later. She had just met with her school counsellor and shared her belief that she may be autistic. This was what the counsellor said:

“You can’t be autistic. You have friendships!”

After hearing this, I was furious. 30 years of self-doubt and frustration washed over me as I remembered the misdiagnosis, the misinformation, and the misunderstandings. My whole life I had exhibited the classic signs of my unique form of Autism, but due to a lack of knowledge and research I had been missed. And it was still happening.

We are different, so why doesn’t anyone know about us?

After I calmed down, I realised that it is not this counsellor’s fault. They are the product of the lack of research and knowledge about girls with Autism. Why is this so? Why do we have a voice but nobody seems to listen? As Dr Lori Ernsperger, PhD, BCDA-D explains:

“Obtaining an ASD diagnosis for a female can be very challenging with scant research and available answers from professionals. Autism was first reported by Leo Kanner in 1943 and since that time there has been thousands of journal articles and wide-spread international attention. Yet, there is a paucity of scholarly research focused on females with ASD” (Ernsberger n.d.).

How are we different?

Many people I have encountered have expressed disbelief that I am Autistic. Their experiences with Autism showed a complete disparity to their observation of my behaviour. To my friends and acquaintances, I seemed perfectly normal. I made friends, was sociable, intelligent and had a sense of humour. In their eyes I had never exhibited any of the commonly known Autistic behaviours – I made eye contact, I acted “normally”, I was well-spoken and thoughtful, I didn’t “meltdown” or hit myself or others. To them, I was just like everybody else. However, appearances can be deceiving.

According to Dr Ernsberger, girls on the spectrum often exhibit –

  1. Skills in social imitation – we observe the behaviour of those around us and replicate that behaviour, as to not appear different or attract attention.
  2. A desire for social interaction – while large groups can be overwhelming, many girls on the spectrum enjoy one on one or small group interactions, which is in direct conflict with the perception that those with ASD are “shut off” from the world and do not socialise.
  3. Passive and shy behaviours – being shy is not uncommon, this symptom is often overlooked and passed off as normal.
  4. Better imagination – girls on the spectrum can often use their imagination to create and express ideas, not just imitate or copy.
  5. Better linguistic capabilities, especially during developing years – many girls on the spectrum have a well formed vocabulary from a young age, whereas people may perceive people with ASD to be non-verbal or have a limited vocabulary.
  6. Interest that focus on animals or people – most children have an interest in a particular animal or their favourite celebrity or hero, so it is often overlooked when girls with ASD show this tendency.

The problem with recognition and getting a proper diagnosis

ASD girls know we’re different. We constantly observe others and see the differences, we feel them. Inside, we know something is wrong. Translating that feeling into words and getting a professional to understand us is often difficult, and it’s frustrating when they try to tell us we are “normal” or when they entertain ideas of personality disorders. We know we’re not “normal”, and we know we’re not curable – we know we have been this way our entire lives.

“…no matter how high my score was on the assessment I took a couple of years ago at the age of 50, my psychologist insisted that those characteristics were caused by childhood trauma, not Asperger’s” (Unknown author n.d., quoted in Ernsberger 2016.).

Some physicians will downright refuse to consider ASD, even when all the facts are right there. Don’t try and tell us our issues are caused by traumas, our traumas are caused by Autism! Similarly, they can often be too quick to jump to personality disorders, perhaps because they are more familiar.

“When women walk through the door with the subtle characteristics of ASD, the doctor will shift to other disorders (Happe 2013, quoted in Ernsberger 2016). These disorders include personality disorders, mood disorders, depression, anxiety, OCD, or even eating disorders.”

With all of these hurdles in place, it is no surprise that girls and women on the spectrum are undiagnosed. It is estimated that amongst intellectually able individuals with ASD, the ratio of girls to boys is 1:10 (Dworzynski et al 2012, quoted in Egerton and Carpenter 2016). This means that for every ten intellectually able boys diagnosed; only one girl is diagnosed. How can this be right? Is Autism in girls simply less prevalent due to biological or genetic factors, or is it a case of misrepresentation? I believe the latter. If I went undiagnosed for over 30 years, and if girls like Anne are being told they can’t be Autistic because they have friends, how many other girls and women out there are flying under the radar?

What we can do

To battle these statistics and overcome the lack of knowledge about girls with ASD, we need to talk about it. Create conversations with other parents, your doctor, your family, your psychologist, and your friends. Blog about it, post Facebook statuses about it, share articles and information. The “Girls and Autism: Flying under the Radar” booklet listed in the references is a fantastic tool to handout to professionals and teachers involved in your children’s life to increase their awareness of our differences. The more awareness we create, the more we can overcome the adversity that girls on the spectrum face every day. The more awareness created, the more public interest, funding, fundraising and research is generated. This creates a trickle-down effect to health care professionals and those that are taking care of our children.

I don’t want to see girls like Anne go through what I went through, the isolation, the ostracism, the anxiety and the frustration. The world is hard enough without having to go it alone.

 

 

References:

Egerton, Jo and Barry Carpenter. 2016. “Girls and Autism: Flying Under the Radar.” http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html.

Ernsberger, Dr Lori. 2016.  “Girls and Women on the Autism Spectrum.” Accessed June 1st, http://www.amaze.org.au/girls-and-women-on-the-autism-spectrum/.

A call to action for Victorians affected by Autism – make your voice heard!

 

Inquiry into services for people with autism spectrum disorder deadline extended

In an exciting move forward for the Autism community, there is a Parliamentary Inquiry into services for people with ASD. This is a fantastic time to take our stories to the government and make our voices heard. The deadline to make submissions has been extended to June 30, 2016. I encourage all citizens of Victoria who are affected by Autism to make a submission if you feel you have something to contribute on any of the following topics covered by the inquiry:

  1. The prevalence of autism spectrum disorder in Victoria;
  2. The availability and adequacy of services provided by the Commonwealth, State and local governments across health, education, disability, housing, sport and employment services;
  3. The adequacy of services to be provided under the National Disability Insurance Scheme (NDIS);
  4. Evidence of the social and economic cost of failing to provide adequate services; and,
  5. The projected demand for services in Victoria.

The Family and Community Development Committee, who is tasked with the inquiry, is requesting submissions from not only organisations but also individuals.

Here’s how to find out more about making a submission. Your submission can take any form you like, it can be a letter or an email, as long as it addresses at least one of the Terms of Reference listed above. I realise it states on most documentation that the deadline is April, however you can see on this page that the deadline has been extended to June 30.

Now is the time to make our voices heard!

In related news, Amaze Victoria released its submission today. The submission was the result of a consulting with members of the Victorian Autism community and contains a comprehensive list detailing a need to improve existing services and create many new services that are severely lacking, including support for – wait for it – teenagers and adults who are diagnosed later in life! This is really exciting for me, as most of the current support services and funding are for children on the spectrum. While this is fantastic for today’s children and their parents, older individuals on the spectrum are often neglected when it comes to accessing support services and funding.

The submission covers areas like diagnosis, education, employment and the NDIS.

Here is a link to the full submission.

 

My thoughts on telling children about their diagnosis

I recently wrote another guest blog for Sprout Therapy Services, about the importance of telling your child about their diagnosis. This is a topic I feel very strongly about, as I went over 30 years without knowing I was Autistic. This wasn’t the fault of my parents, they had no idea. In fact, my mum passed away a year before I was diagnosed so she never even found out. There is simply a lack of research and education about girls and women on the spectrum, and how we often present differently to boys – more on this to come in an upcoming post!

Here’s the Sprout blog:

Telling your child about their diagnosis?

 

Getting the right diagnosis – TIPS

Getting the right diagnosis – TIPS

So I finally found a really awesome psychiatrist! It was hit and miss, I had to try a few before I found one who really knew his stuff when it came to Autism – and women with Autism. We clicked immediately, he made me feel comfortable and I had high hopes for a concise and detailed diagnosis. So, where to begin?

Fortunately, this time I came prepared. I had spent far too much time and money trying to fully explain to doctors exactly how I felt, and the things that I experienced. Too often I entered an appointment and immediately forgot everything I wanted to say. When I was asked questions I would totally draw a blank, or give a half bumbling explanation that didn’t nearly cover everything I wanted to say. At times I would get emotional or focus on a particularly troubling point in my life which led to diagnoses that centred around that one thing. Sometimes the psychiatrist would ask leading questions that took me in the total opposite direction and led to strange and unrelated diagnoses (as if I went into the appointment as an apple, and they told me I was a banana), and being shy and submissive I just sat there and let it happen without speaking up. This time I was determined to get everything off my chest, so I made The List.

THE LIST (aka Being Prepared)

The List was four pages long, my laundry list of symptoms, concerns, mannerisms and issues that I experienced on a daily basis. It took me two days and multiple conversations with family members and friends who knew me best. Prior to my initial psychologist’s ASD diagnosis I had assumed many of my behaviours were normal (doesn’t everyone hit their head when frustrated or burst into tears when something doesn’t go as expected?) so it took me some time to search through these behaviours and identify what was typical and what was different.

When compiling The List, I organised my points under headings such as Social & Interaction, Sensory, Relationships, Visual & Mind, Routine & Change, Verbal and Communication, Anxiety, Sleep, Memory and Day to Day. Because I am not good with categorising, I got my sisters to help me place each symptom in it’s related category. Here is an example of some of the symptoms on The List:

Social & Interaction

  • Can’t answer the phone – I need to recognise the number and be prepared to talk to that person. Even when I recognise the number often I can’t face talking to that person because I need time and energy to prepare for social interaction
  • Don’t understand or enjoy small talk – don’t see point of it, also don’t know how to generate small talk or respond
  • Find it difficult to maintain conversation – when there is a lull in conversation, I panic and don’t know what to do or say so I often say strange things
  • Don’t like going out, social interaction. Get overwhelmed quickly
  • Misunderstand social cues & social etiquette (ie: someone who often helps me will hint that they need help, I will miss this and the person will get upset and feel I have ignored them). I can be abrupt with people and am considered rude, especially when overwhelmed.
  • I hide a lot of my personal traits and try to act “normal”, this is exhausting

Sensory

  • Touch – lightest touch (eg slight rubbing on skin) is painful
  • Can’t handle tags, zips, buttons or seams in clothing – have to remove them before wearing
  • Only wear certain fabrics like viscose/elastin
  • Lights, sounds, movement, I am constantly on high alert (fight or flight mode)
  • Smells – a lot of smells make me sick – can’t be in same room when someone sprays perfume or deodorant
  • Can’t touch certain fabrics

Visual & Mind

  • Can’t “connect the dots” – struggle to understand how Point A gets to Point B without having the process explained
  • Don’t understand generalisations, can’t think of examples
  • Can’t categorize (I got help with this list)
  • Need things written down/visual eg questions, instructions, etc to enable me to follow so I can refer back as soon as I forget
  • Find patterns soothing, hypnotic – I will stare at patterns, my eyes unfocus and I lose track of time. Patterns often calm me

Routine & Change

  • I have a daily routine that I keep and I get anxious/overwhelmed if this routine is interrupted or changed, even by something as simple as the doorbell ringing
  • HATE sudden changes, I get anxiety/overwhelmed, have meltdowns – from childhood (eg: stopping off at the supermarket on way home from school when I expected to go straight home – this was incredibly anxiety inducing and made me frustrated and angry)
  • Hate unexpected visitor drop ins or late notice drop ins

Verbal & Communication

  • When I am overwhelmed (social interaction, processing information, etc) I will shutdown and become non-verbal. People talk to me and ask questions and I just can’t respond. I feel pain and confusion when they interrupt this shutdown time, like I am physically and mentally being torn away from my thoughts
  • Can’t verbalise or explain things – especially things about me
  • Can’t go “off-topic” eg: I am doing something or talking about something and somebody interrupts/distracts me by bringing up another topic, I cannot return to my train of thought or activity without severe confusion, it causes cloudiness and confusion to change topics
  • Lose train of thought midway through conversations, sentences, if I am distracted (by light, patterns, noises) or interrupted

Anxiety

  • Have to find a chair with my back to the wall, in corners, etc
  • Always have fight/flight mode engaged in public (exhausting)
  • When I have to somewhere new or unknown

Sleep

  • Have trouble falling asleep every night since I was a baby, can’t slow down my mind or stop thinking
  • Get fidgety, agitated, can’t relax
  • Sometimes in bed I get super energetic until I express that energy (eg: pushing and poking, laughing hysterically, jumping around, throwing my arms around until I am calm and fall asleep)

That isn’t the complete list, just a few examples under some headings to get an idea of the kind of behaviours I considered out of the ordinary. If you are particularly knowledgeable about ASD you may read this list and think wow, she’s super dooper Autistic, how did it take 31 years to get diagnosed? The answer is simple – ACTING. Some of my friends from over the years have contacted me since I went public with my diagnosis and they have said they don’t believe I am autistic, there is “no way” because I seem so normal. The thing is, they have no idea how hard I have worked over the years to appear that way.

“BUT YOU SEEM NORMAL TO ME?”

From a young age I observed people. I watched them interact with each other, with me, what they said and the mannerisms they exhibited. I learned what made people laugh, what offended people, what made them happy. I learned to mimic these behaviours because deep down, I had no idea how to behave. Nothing came naturally to me, I had to force every interaction, every conversation, even just walking down the street was an act. I had to walk like everyone else, act like everyone else, smile and nod like everyone else.

So of course, I was a social chameleon, mimicking the behaviours of my friends and always came across as just another normal girl. Extracting who I really was and separating that from the controlled behaviours that I had learned over the years was a part of the process in creating this List, and frankly would not have been as easy without my psychologist’s previous ASD diagnosis. I have learned so much about myself in the year since her diagnosis.

THE PSYCHIATRIST’S OFFICE

So, here I was sitting in the Doctor’s office and sweating profusely. I had never been here before so I was nervous and didn’t know what to expect. I shifted uncomfortably in my seat and tapped my foot. When the Doc asked me what brought me to him that day, I handed him The List, and told him that I struggled to remember and verbalise everything that I experienced, so I had prepared a list to help me help him in identifying what was wrong with me. I told him that in the past I had been been diagnosed with many disorders and illnesses, so this time I wanted to make sure everything was covered off and that he had a complete picture of everything I experienced. I also made it clear that while my previous diagnosis of Autism seemed to fit me best, I was not attached to any particular diagnosis or label, I just wanted someone to understand what I went through and hopefully help me in the best way possible.

I also told him I brought school reports ranging from primary school to high school, which I felt gave valuable insight into how I struggled as my school years progressed and social interactions became more complex.

Then I waited as he read The List. He underlined things, made notes, nodded, smiled, asked some questions, then after he finished all four pages he moved on to my school reports. He commented on how they all had a similar theme – “Catherine is distracted easily. She is intelligent and capable of so much more but she has trouble staying engaged”.

As my list was so detailed and my school reports gave a history, he said he felt like he knew me already, and was able to ask direct and relevant questions.As I had just spent days preparing all of this information, it was fresh in my mind and the answers to his questions came easily. For once I was quite concise and insightful, and once our hour was nearly complete he had quite the picture of my life that normally would have taken many sessions to establish.

Then came the diagnosis that I have been waiting for:

“Autism Spectrum Disorder with comorbid Attention Deficit Disorder, Obsessive Compulsive Disorder, Generalised Anxiety Disorder, Sensory Processing Disorder and situational Depressive Disorder”

Or, as I like to call it ASDADDOCDGADSPDSDD (not really). Every single one of those things completely and totally fits with me, and are the missing puzzle pieces. Finally I went into a doctor’s office as an apple and he looked at me said, you are an apple.

So there we have it, I got my Expensive Piece of Paper (if you’ve read my previous posts you may know what this means). I can now move forward and get the assistance I need to help me live independently and hopefully be much happier, now that I know exactly why I am the way I am.

 

 

I did a thing! Guest blog for Sprout Therapy Services

I am very happy to share my first guest blog post for Sprout Therapy Services! You can find it here:

Thoughts from a grown up with Autism

Sprout does some fantastic early intervention therapies for children with special needs, including my own niece and nephew! They are so lucky to be growing up in a society that is ever changing and becoming more accepting and encouraging of people with special needs. If you know of any family or friends with special needs kids, please share with them so they can check out some unique and beneficial programs that can help their children grow and develop.

Special thanks to Krista and Monica at Sprout for getting me involved with their blog x