I started writing this blog two days ago about my son’s MRI scans…then I read ‘Autism and Oughtism’s’ blog www.autismandoughtisms.wordpress.com entitled “Neurotypical: for want of a better word”, which then led me to ‘The Tumultuous Truth’ http://sharon-theawfultruth.blogspot.co.nz/ – so I figured it was about time to finish and post this!
In 2010 I completed an internship at the Compass Family Center www.compassfamilycenter.org in San Diego, USA. This Center provided low cost counseling, family guidance and educational advocacy for families with children with special needs. It is a wonderful agency doing great work. The internship was part of my Masters degree from Curtin University. As part of the assessment for the internship I had to write a reflection paper for my supervisor on a weekly basis as well as a mid-term and final paper. Here is a bit from one of my weekly reflection papers (from 2010) which I found this week when I was looking through my files.
This week (June 1, 2010) the ‘San Diego Union-Tribune’, a local newspaper of San Diego, published a front page article pointing to a research study being done at the University of California San Diego (UCSD) on identifying biological markers for the detection of autism. This article was significant for me personally as my son is part of the study, but also of interest in terms of the impact this could potentially have from a counseling and therapeutic perspective on the clients at Compass Family Center. The research study involves conducting a MRI scan on young children (under the age of three) who have been either diagnosed or identified as ‘at risk’ of autism. As part of this study a child who has an older sibling with autism is also deemed to be ‘at risk’, due to the increased incidence of a family with one child with autism having another child with autism. The MRI scan involves waiting for the child to fall asleep naturally, which differs from other scans where the child is medicated to fall asleep. During the scan certain recorded sounds are played like a person talking, the sound of an aeroplane, children playing and other sounds to see what activity can be detected in the brain.
The preliminary results of the study show that the left temporal cortex, the social-communication part of the brain, shows little to no activity when noises of a person talking are played while they are sleeping. However, when the sounds of an aeroplane, cars or other mechanical type noises are played the right temporal cortex does show a lot of activity. The researchers stated in the article that the hope was that children could have a scan soon after they were born to identify whether or not they may ‘at risk’ of developing autism.
I go on in the reflection paper to explore the questions raised for me from the study about earlier diagnosis, about earlier intervention, meeting and then no longer meeting diagnostic criteria and about the plasticity of the brain. I talk about the possible effects from a counselling perspective of having biological markers for autism, informing a family their child is ‘at risk’ sometime soon after birth, MRI scans on babies and other issues.
What I want to say now relates to my son’s part in this research study. At the time of the first scan my son was 20 months old and had already been diagnosed. The researcher and I sat in a dark room in an industrial complex in La Jolla San Diego late at night whist my son slept on the MRI ‘bed’ in a room behind a glass window directly in front of us. My son had another scan at 2 years and 7 months, and then a final scan in February this year. My son was aged 4 years and 3 months old for the final scan. This time the researcher showed me my son’s brain images from the first scan at 20 months as compared to the current scan. She pointed out on the computer that the ‘autism overgrowth’ (her words) from the first scan was so significantly reduced in my son’s current MRI scan that his brain now more closely resembled that of a typically developing child than that of a child with autism.
I looked closely at the pictures of my son’s brain sitting side by side on the computer screen and it felt all a bit surreal. I was later given a hard copy of the scans to take back to my home in Australia. So this is where things get tricky. My son is absolutely hands-down a person with autism. Sure, he has changed and progressed from the child who was diagnosed at 18 months of age. Yes, there has been early intervention, but I can assure you the diagnosis of autism is stable. Being told by a very clever researcher that my son’s brain more closely resembled that of a ‘neurotypical’ child than that of a child with autism, was…well…something.
So to answer the question in the title of ‘The Tumultuous Truth’ blog: ‘Neurotypical? Who Exactly? Well it would seem that it’s my child with autism.
Apparently you can be a child with autism with an ‘autism brain’ and then later on have a (more) ‘typical brain’ but still be a child with autism. The researcher also mentioned to me that in the study they were seeing that the female brain with autism was ‘looking’ different from the male brain with autism, and more work needed to be done in this area. As Dr Andrew Whitehouse wrote in his article published this week http://theconversation.edu.au/abcs-four-corners-and-the-messy-truth-of-autism-9050 ‘Autism is a messy truth’. Well said. That’s what I can conclude about the results of those MRI scans.
So to jump back to the two blogs I mentioned at the start…In terms of ‘categorizing’ in one big group all those who do not have autism, that can be a messy too. Which brings me to the use (and my use) of the term ‘neurotypical’ to describe people who do not have autism. I have, upon recent reflection, used the word neurotypical at times to feel part of a community who do understand that our children are different, not ‘abnormal’, and also to try and educate people that my child is not ‘less than’, or even ‘more interesting than’, your child. That’s partly what I am trying to achieve by using this word that is an over generalization, and not really accurate. Unless I check all of the non-autism people in for a MRI scan and then can interpret the results, who really knows what their brain ‘looks’ like or if it is ‘typical’ or not. Plus with brains having the ability to ‘change’ how they look, maybe things have a long way to go before a person’s neurology can be categorized accurately.
At the end of the day ‘the general public’ are not actually obliged to know about or be interested in autism and its related terminology, but I want them to know and I need them (to try) to understand the differences. My big hope is that greater knowledge and understanding will translate into greater acceptance and real empathy. That’s because my child with autism faces some tremendous challenges in this world and people in general can make things better for him.