ATT is running a study in the area of cognition in autism. We are seeking for the participation of children with autism and control children (siblings) to conduct a range of assessments. You can find below a description of the project. We are planning to run this in July and early August. Please do contact us if you are willing to have your child take part. There is no limitation in age or type of autism, everyone is welcomed! Thanks for your help.

Dr. Lorene Amet

Dear Parents

Re: Research Study/ Autism Cognition Pilot Project

Urgently needed - control children ages 2- 16

(note we have a few places left for children with autism too!)

The cognitive abilities of individuals affected by Autism are difficult to ascertain, in part due to their problems in communicating with others. An Edinburgh-based charity, the Autism Treatment Trust, is conducting a pilot study that aims to identify, and measure the usefulness of, a range of cognitive assessments that are believed to be appropriate for Autistic children. The Autistic children will have a range of communication and behavioural problems. The ultimate aims of the project are to deepen our understanding of the Autistic syndromes and, by so doing, enable us to treat Autistic children more effectively.

However, to validate our study scientifically, we need also to compare the Autistic children with children (age 2-16) who do not have Autism. Therefore we are looking to recruit non-Autistic children to participate in our project. If you are interested in helping us out or want more information please contact us on 0131 558 7444 or 07590 698780. If you know of another family who may be interested in participating, please pass on this information. The project is outlined below:

Evaluations will be conducted at our clinic at 29A Stafford Street, just off the West End. However we can accommodate participants by conducting the assessments in your own homes. All the assessments will put the child’s needs first and will be fun and entertaining. We will offer feedback on your child’s performance. Our areas of interest are non-verbal intelligence, level of achievement in word reading, “pseudoword” decoding, reading comprehension, numerical operations, mathematical reasoning, spelling, written expression, listening comprehension and oral expression. It may sound like hard work, but we promise we will make this fun! The assessments are standardised, which means that we can use the results to compare an individual’s performance to that of his/her peer group. The assessments also enable us to analyse each child’s skills. We have a special developmental scale for infant and toddlers (ages 1 to 48 months); this involves a range of age-appropriate activities and stimulations.

Our charity has its own playroom, and our staff are enthusiastic and very experienced in dealing with children and meeting their needs. Depending on the age of the child, the assessments may last anything from 45 minutes to 2 hours (if your child enjoys such lengthy interaction).

Thank-you for your interest. We look forward to hearing from you.

Dr. Lorene Amet, DEA, Dip BIOTECHNOL, D Phil, Principal Scientist

The Autism Treatment Trust (www.autismtrust.org.uk)- Registered Charity and Company Limited by Guarantee. Incorporated in Scotland. No. 236901. Scottish Charity SC 033523

What is the project about?

Autism is characterized by differences in reciprocal social interaction, communication and by restricted, repetitive and stereotyped behaviours. The severity of impairments varies greatly across individuals. Although the aetiology of this condition is not yet understood, it is generally accepted that it results from a combination of genetic and environmental factors affecting the development of susceptible individuals. It is currently unclear how the cognitive skills of ASD individuals should be assessed, particularly when there are issues of communication, behaviour and motivation that affect what a person says or does on a cognitive test. The project proposes to pilot a range of cognitive assessments that have been specifically designed for children with language and communication problems. By carrying out this project, we also hope to gain additional understanding on how these assessments should be selected and administered in order to maximise the suitability, validity and reliability of the measurements. This pilot work will also further assist in the development of follow-up projects that will look at the characterisation of various autism sub-types.

What would your participation involve?

· We would like to initially contact you by phone to discuss the aims of the study and what it will entail.

· We would like to ask you to come to our clinic with your child. We will provide a study information pack and will ask you to sign an informed consent form if you wish to take part to the study.

· Your involvement is voluntary, and you may withdraw at any time if you decide that you no longer wish to take part.

· You child will be in our purpose-built play room and will be engaged with our staff in a range of play activities (initiated by the child) mixed with short-bursts of assessments. We will aim to conduct 1-2 cognitive assessments, in several stages, delivered as appropriate, over the course of 1-3 meetings. The method of delivery will be child-friendly and particular attention will be made to avoid stressing the child and ensuring he/she enjoys the time spent with us. We want him/her to have fun whilst allowing us to gain valuable information on his skills and difficulties. The selected assessments are targeting a range of abilities from infant-toddler stage to that of a 16 year old individual, depending on presentation.

· All assessments will be videotaped. You will be able to see your child at all time, by CCTV monitoring, or through the one way mirror.

· It is anticipated that the whole play/assessment session may take 1-2 hours.

· Whilst your child is in a playroom, we are aiming to conduct two interviews. One that will assess the Adaptive Functioning of your child (Vineland Interview) and the other that will measure the social skills of your child (Social Communication Questionnaire).

What would happen to any information about you / that you provide?

· By assessing the cognitive skills of your child we will be able to understand better how autism impacts on cognition. We will also be better equipped to characterise his/her sub-type of autism, when these assessments are coupled with other forms of behavioural and communication assessments.

· Any reports produced from the project will anonymise participants (like you) and thus protect confidentiality.

· Confidentiality: Your child’s scores will be kept anonymous and only available to the researchers. All information will be kept anonymous.

· Data protection - we would ensure that your contact details (and related information) would be stored safely and securely, and would never be released to anyone else.

Contact details for further information

Please feel free to contact the project team if you require further information:

Address:

Autism Treatment Trust

29A Stafford Street

Edinburgh EH3 7BJ

e-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Web: www.autismtrust.org.uk