Skip to main content

Autism Research Study - Institute of Psychiatry

MRI brain scan for an Autism Research study at the Institute of Psychiatry, London.

By being a member of the National Autistic Society, I receive a quarterly magazine from them called Communication. A very interesting magazine packed with heaps of information, articles and advise. It was in the Summer 2010 edition that I first saw an advert by the Kings College London, Institute of Psychiatry looking for Autistic children to take part in a 3 year research study.

I thought what a fantastic opportunity and promptly called the number advertised. I was put through to a wonderful young researcher who gave me the low down of what was involved and required from us. at the time we were currently living in rented accommodation while our house was rebuilt after the van parked itself in our front hall. (See When House Met Van post and blog for a recap).

The Institute was studying how the brain develops, in particular the development of the white matter that builds connections between brain regions. They were studying this in children with and without Autism, to find out how the brain develops in children with Autism.

Could we visit London once a year for 3 years for Ryan to have an MRI scan of his brain to investigate myelin development in individuals with ASC together with some neuropsychological and diagnostic assessments?  Absolutely we could, we'd make a family weekend of it each summer holiday.

Firstly they would call me again to take a full medical history by taking us through a number of questionnaires to help find out how Ryan had been feeling in himself recently. This initial history taking took approximately 2 hours and they were happy that Ryan met the criteria they were looking for.

We knew that although the study might not help us personally, it may however help other people in the future.

We made our first trip to London on 2nd August 2011. Ryan was nine years old and quite nervous but we had spent the year building up to the appointment preparing Ryan for exactly what was involved and we had bought him a special treat of the brand new Pok√©mon movie on DVD for him to watch while he was in the MRI scanner.   

We spent the entire afternoon at the research centre. They began with the Autism Diagnostic Interview (ADI-R) this focused primarily on the features concerned with the diagnostic characteristics of an ASC.

Ryan scored 24 on the Impairments in Reciprocal Social Interaction tests. The score cut off to be considered as Autistic is 10. Ryan’s score showed his difficulties with:- use of eye gaze; lack of social smiling; no imaginative or group play with his peer group; limited response to the approaches of other children of the same age; little interest in showing and directing attention; limitations in terms of offering to share; no seeking to share enjoyment with others; little offering of comfort; poor quality of social overtures; inappropriateness of social responses.

On communication Ryan scored 21 (the Autism score was 8). This score reflected:- limited use of pointing to interest; limitations in use of conventional and informational gestures and body language; no imitation of actions and imitative social play; limited imaginative play; limited social verbalisation/chat and reciprocal conversation; stereotyped utterances; slightly inappropriate statements and use of neologisms.

Ryan scored 6 (double the Autism cut off score) for repetitive behaviours and stereotyped patterns of behaviour. This reflected some interests of unusual intensity, somewhat repetitive use of objects and slightly unusual sensory interests.  

In summary all this confirmed what we already knew that Ryan does meet the criteria for a diagnosis of Autism, but what was probably most interesting that day was that Ryan was found to have an IQ of 123, percentile 94 which was considered outstanding for a child of his age. 

MRI Scan

Ryan: I was fine with the MRI scan. I had a bad foot anyway then mum made me walk a long way. I don’t know how far it was don’t ask me, but I still have bad feet now technically.

It looked like one of the machines from Avatar. It was really cold in the room. It was loud noises. It had loud noises. It made loud noises. Yeah MADE.
I had to lay down on the bed, they gave me headphones so that I could listen to my movie and drown out some of the noise.  It made lots of noise, I think we said that already.

There was an angled mirror that the nurse put over my eyes so that I could watch my Pokemon Movie.

Stay calm, lay still, don’t think too much and stay happy is the advice I would give to anyone who needs to have a scan. I’ve done it 3 times in total, I don’t really remember the others.  I think I fell asleep listening to some music. The machine was really loud. Did I mention that?

I got paid £50 each time I went to London, but my mum lost it on one trip when I gave it to her to look after.

Reading my brain waves tests against a normal person. Well not normal an average person. What is normal?

Sarah: Ryan said he found writing this post really hard. He thinks writing fiction is much easier. He said to me “I can write fiction, I don’t have to think about it, it just comes out, but writing facts is hard because you have to say what you think of and how you feel about things.”

Yet Autistic children generally find imagination/imaginative play difficult. Ryan says he prefers to make up a pretend world and live in it because it is easier for him to cope with.

Is Myelin Content Altered In Young Adults with Autism? 
The research study that we were part of was studying how the brain develops by imaging myelination in typical development and in individuals with autism.

Myelin is an insulating layer, or sheath, that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances.

The purpose of the myelin sheath is to allow electrical impulses to transmit quickly and efficiently along with the nerve cells. If myelin is damaged, the impulses slow down.

Myelin is a dielectric (electrically insulating) material that forms a layer, the myelin sheath, usually around only the axon of a neuron. It is essential for the proper functioning of the nervous system. It is an outgrowth of a type of glial cell. The production of the myelin sheath is called myelination. In humans, myelination begins in the 14th week of fetal development, although little myelin exists in the brain at the time of birth. During infancy, myelination occurs quickly and continues through the adolescent stages of life.

Myelin is made up by different cell types, and varies in chemical composition and configuration, but performs the same insulating function. Myelinated axons are white in appearance, hence the "white matter" of the brain. The fat helps to insulate the axons from electrically charged atoms and molecules. These charged particles (ions) are found in the fluid surrounding the entire nervous system. Under a microscope, myelin looks like strings of sausages. Myelin is also a part of the maturation process leading to a child's fast development, including crawling and walking in the first year.

There is increasing evidence that autism is associated with abnormal white matter development and impaired ‘connectivity’ of neural systems.  Brain connectivity is mediated by myelinated axons, which may be altered or abnormal in autism.  However, to date, no study has directly investigated the brain myelin content of autistic individuals in vivo.

The primary objective of this study is to elucidate differences in myelin content in typical and autistic brains. The ultimate aim is to improve our understanding of the underlying neurobiology of autism using non-invasive magnetic resonance imaging (MRI) techniques.

Using a new myelin-specific magnetic resonance imaging technique, termed mcDESPOT, brain myelin content was compared between 14 young adults with autism, and 14 matched controls.  Relationships between myelin content and clinical symptom severity within the autistic group (measured by the Autism Diagnostic Instrument, ADI-R); and the severity of autistic traits in both cases and controls, using the Autism Quotient (AQ).

Individuals with autism demonstrated a highly significant (p < 0.0017) reduction in myelin content in numerous brain regions and white matter tracts.  Affected regions included the frontal, temporal, parietal and occipital lobes.  White matter tracts most affected included the corpus callosum; the uncinate and posterior segments bilaterally; left inferior occipitofrontal tract and cerebellar peduncle, arcuate fasciculus and inferior and superior longitudinal fasciculi; and the right anterior segment.  Further, within autistic individuals, worse interaction score on the ADI-R was significantly related to reduced myelin content in the frontal lobe; genu of the corpus callosum; and the right internal capsule, optic radiation, uncinate, inferior frontal occipital fasciculus and cingulum.  Additionally, increased autistic traits in both cases and controls were significantly related to reduced myelin content of the left cerebellar; genu of the corpus callosum; and left temporal lobe white matter. 

Individuals with autism have significantly reduced myelin content in numerous brain regions and white matter tracts.  We also provide preliminary evidence that reduced brain myelin content is associated with worsened social development in autistic individuals, and increased autistic traits in both cases and controls.

Taken from the International Society for Autism Research.


Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We


Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the h