What is the Elizabeth Newson Centre?
It is a facility for the families of children with any developmental communication disorder, and is designed to help parents to obtain a specialist diagnostic assessment of their child as early as possible, so as to move towards focused intervention without delay. Children are seen across the age range, but we may need to adapt procedures for those of secondary age. We do not normally see young people over 16.
The Centre is able to provide comprehensive assessments across the full-range of communication disorders and has particular clinical and research experience in very early intervention, Pathological Demand Avoidance syndrome and counseling approaches for children and young people with Asperger’s syndrome. The Centre is led by Phil Christie (Director of Children’s Services) and has two additional specialist consultants, Dorinda Miller (Consultant in Speech and Language Therapy and Developmental Psychology) and Rukhsana Meherali (Consultant Developmental Psychologist). There are also two Assistant Psychologists working alongside, who contribute to each assessment in different ways.
Why do families need a diagnosis?
Parents of any child with a specific problem need to know what that problem consists of, whether it has a name or not. The name will in fact be useful in finding the right support group, looking for more information and explaining his problem briefly to people who ask. Much more important in diagnosis is that we map out the child’s special difficulties, begin to explain why he or she behaves in the way he does, work out what are the child’s strengths, and use all the guidelines that exist to think about how he can best be helped. Some children are not quite typical of any one diagnostic category; even then, it is possible to set out in what ways the child does and does not conform to a particular diagnosis, and what are the implications for him or her. Our aim is always to make better sense of the child in order to actively aid his development.
The better parents understand their child and his or her condition, the more capable they will be in meeting the difficulties that arise. This is why partnership between parents and professionals is so crucial.
Children with different diagnostic profiles will need different emphasis given in relation to educational approach and management. Increasingly, this is being recognised nationally and the Autistic Spectrum Disorders: Good Practice Guidance (published by the Department for Education and Skills and the Department of Health, in 2002) points to ‘a number of sub-groups within the autistic spectrum [here used synonymously with ‘pervasive developmental disorders’]. There are differences between the sub-groups and further work is required on defining the criteria … It may be necessary to adopt specific strategies in relation to particular areas of difficulty in order to assist a child to maximise their potential and preserve their dignity.’
What happens in a play-based assessment?
The diagnostic assessment is based on observation and analysis of a total of three or four hours structured and unstructured play with the child. Two hours of this takes place in a specially equipped playroom, and will be observed by parents and professionals together, through a large one-way screen; parents and child have as much access to each other as is needed to keep the child happy. During this time, we also take a comprehensive past and present history. During the second session, the child is also observed in our adventure playground, or in and around the Centre and attached school. After a short break, parents and staff use this time to ask further questions and discuss some of our conclusions. In some cases, this session will be used to carry out specific tasks or other activities decided by the Consultant.
We try to ascertain both immediate and long-term concerns of parents in order to respond to these and we also offer advice on educational provision, and on the needs that should be included in any other assessment that may be in progress. The child’s strengths as well as his or her difficulties are assessed. The diagnosis is fully explained in detail, including what this would mean from the child’s point of view, together with any relevant implications. All of the above is written up in a detailed report (about 20-25 pages), which will normally be completed within 5-6 working weeks. The report is usually organised in three long sections: the past and present history; analysis of the observational play session; and a section for comments and recommendations, which discusses first the diagnostic conclusions, secondly the implications for education and if necessary any additional issues, of handling and management. It is open to parents to follow up this report by letter or phone if they wish, without any time limit. We also offer parents as much additional written information as they want, and can recommend support groups and other information sources where necessary. The report is circulated both to parents and to the referring professional, and to all relevant persons involved with the child, with parents’ permission.
What about professionals already involved or about to be involved with the child?
Before the assessment takes place, we will seek parents’ permission to ask for reports from their various professionals. This helps to give us an important perspective on how the child has been perceived in the past and any issues of current significance. We very much welcome any professional accompanying the family on the assessment day, provided the parents are happy with this.
Can the Centre carry out other forms assesment?
Increasingly, we are being contacted by Local Authorities or PCTs, to carry out assessments of a child in their local area. This usually involves observing the child in school or other settings, discussions with parents and staff, and feeding back through a multi-agency meeting.
What about cost?
As a charity, the service is costed on a non-profit making basis. Fees are based on the actual costing of our work, which involves a team of three Psychologists. A team diagnostic assessment is charged at a lower figure for ‘local’ children than for non-local children and these amounts will be specified on enquiry. A local child is defined as one living in the NORSACA area.Fees are most usually paid either by primary care trusts, or by other authorities. Our Provider Code is 8DV24. Occasionally other sources of fees (for instance, medical insurance) might be appropriate, and on occasion parents have found a charitable trust fund to sponsor their child. In some instances, independent assessments are considered if accompanied by a professional referral. The Centre is a self-supporting non-profit making venture, and does not rely on other functions of NORSACA, although of course, the services are mutually supportive in a non-financial way.
How is a child referred?
Anybody can make an initial referral of a child to the Centre, including parents direct. However, since the referral eventually needs to be supported by professional referral and funding, the best means of doing this is likely to involve referral by the family doctor, a paediatrician, or another professional. The Centre can offer advice on courses of action in individual cases.
What other activities does the diagnostic team undertake?
There are other activities which are self-supporting or charitably funded:- An information service of written materials (a publications list and an order form are both available for download from the website: www.sutherlandhouse.org.uk)
- A number of different types of training for professionals, both in-house and elsewhere
- A workshop series for brothers and sisters
- Advice for legal cases involving children or young people with autism or PDA, and counseling for teenagers. Please note that we are unable to attend Special Educational Needs Tribunals, although parents are welcome to use the advice given in our reports
- Research within the developmental disorders, especially in the area of diagnostic issues, early intervention and PDA
Although The Elizabeth Newson Centre is run within the management structure of a society for children with autism, we would stress that the Centre is not here solely for children with autism, but for the whole range of communication and developmental disorders. We think it important to distinguish different conditions within that range, but also to identify those children whose difficulties are more temporary or perhaps less complex. Whatever the outcome of the assessment, we are concerned to help parents find ways of building on this knowledge to move their child forward.
The Elizabeth Newson Centre is continually trying to improve the quality of the service it offers and welcomes suggestions or comments. A detailed questionnaire will be sent to parents to seek their views within 6 months of the assessment.
If there are any complaints about the quality or level of service offered, a complaints procedure is available on request.
Email: Diagnostic
Centre
Tel: 01623 490879
Jed exploring the Playroom