Sharing: The Invisible Women With Autism

Misdiagnosed and misunderstood, autistic women and girls frequently struggle to get the support they need. (Mandavilli, 2015)

An absolute must read for people affected by ASD and professionals alike. It should not take 10 years and 14 psychiatrists to get a diagnosis of ASD. More information and research is required to ensure more health professionals are aware of the vast differences within the Spectrum, so that people are correctly diagnosed and receive the support they need.

Article link: http://www.theatlantic.com/health/archive/2015/10/the-invisible-women-with-autism/410806/

Sharing: Autism in the Workplace

“Firstly, I regard autism as a set of neurological differences, not as something that makes me defective. I’m like an Apple Mac in PC World.  I may have been born missing an app or two, but I’ve developed some good workarounds plus I have a few add-ons that the other operating systems don’t.”

-Maura Campbell, “Autism in the Workplace”, 2016

What a fantastic analogy! Couldn’t have put it better myself. Click the link to read the full article by Maura; it’s a real inspiration for all you working Aspies/Autistic’s. X

Sharing: “Why I Wish I’d Been Diagnosed as a Child”

Sharing: “Why I Wish I’d Been Diagnosed as a Child”

I have come across this article by Rosemary Collins on The Establishment, which is well worth a read. It shares many insights on going undiagnosed as a child with Autism; one sentence stood out to me above all:

“I told him some things I can now recognize as outright lies: that a girl I barely spoke to was my best friend; that I “loved” Brownies, when in fact I found each meeting exhausting and overwhelming. Even at that young age I had learned to say these things, because they made adults happier than the truth did.”

As a girl on the Spectrum, how many of us repeated what we thought we were supposed to say? We didn’t believe these things, we just said them because everyone else said them; this was our culture. What is it about girls, and the boys that share our unique ASD characteristics (yes – they exist!), that makes us feel like we have to dissolve our individuality into the crowd?

I would love to read any thoughts about this, please feel free to leave a comment using the link below.

 

Featured image “Girl on a Bridge” courtesy of The Establishment site, 2016.

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.