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 accomodation 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 were 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 Pokemon 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.