AUTISM SPECTRUM COMMUNITY ASSESSMENT MANUAL 2 Contents 1. Contents page Page 2 2. Flow chart of whole process Page 4 3. Referral to ASCA Page 5 4. ASCA Referral Form Page 7 5. Consent and Information Gathering Process from Parent/Carer Page 11 6. Cover letter to parents Page 12 7. ASCA leaflet to parents Page 13 8. Consent Form Page 15 9. Information from Parents/Carers Page 16 10. Letter to GP Page 26 11. Assessment Report Request Page 27 12. Extra professionals request form Page 28 13. Guidelines for Professionals Page 29 14. School Based Assessment Form Page 33 15. Nursery based Assessment Page 42 16. Diagnosis Meeting Agenda Page 53 17. ICD-10 Criteria Page 54 18. Agenda for Feedback to Parents/Carers Page 55 19. ASCA Report Summary Page 56 20. ASCA Report Summary – FAST Referral Page 57 21. Appendix I - Executive Summary [WASP Project] 22. Page 58 Appendix II – Information Sharing Document [SASPI Accord] File Name: ASCA Manual Owner: Mary Paris Page 63 Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 3 ASCA Manual File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 4 ASCA Process Flowchart Child has a Suspected ASD Referrals have to be agreed by two professionals one from health and one from education and parents. Referrals can come from Education*, Social Work*, Health*, Parents*. Referral form or comprehensive letter including details on referral form has to be included with referral. Also include any other relevant information. Triage by community paediatricians. One of the following decisions will be made: 1. Requires further information – return to referrer 2. Requires clarification – general paediatric appointment given 3. Agreed referral – goes onto ASD/ASCA Pathway 4. If inappropriate referral – return to referrer or redirect to appropriate service General paediatric appointment held, two options available: 1. Remain within Community Paediatric Service 2. Refer to appropriate service 3. Put onto ASD/ASCA Pathway ASD / ASCA PATHWAY Name added to ASD/ASCA database. Information leaflet and consent paperwork sent to parents/carers. Consent back from parents/carer. If consent paperwork not returned within two weeks, ASO will contact parents/ carer by phone and ascertain whether paperwork received or whether referral is still required. If paperwork not received, then resend. If consent not returned after a further 2 weeks, referral returned to originator. Set Diagnosis date with Education no later than 20 weeks from acceptance onto the Pathway. ASO’s request Assessment Reports to be returned three week prior to the Diagnosis Meeting. ASO will provide pack to Community Paediatrician will give to Chair at meeting. If no diagnosis made, pack to be returned to ASO Gather assessment reports and circulate three weeks prior to Diagnosis Meeting. Referrals can come from: Education – also to be agreed with Educational Psychology and Health Social Work – also to be agreed with health and education Health – also to be agreed with education Parents – should seek advice from school and health professional File Name: ASCA Manual Owner: Mary Paris Diagnosis Meeting must, as a minimum, include community paediatrician, education representative and two other professionals. Final Report agreed, signed by paediatrician, circulated to family and involved professionals. If referred to FAST, along with the ASCA reports, a front page, should be attached, explaining why outcome could not be reached, also include a copy of the completed Report Summary including the ICD-10. Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 5 REVISED PROCESS FOR ASCA REFERRALS Referrals are received by the Admin Support Officers in each of the CHP areas, are logged on the system and taken to the next triage meeting. Referrals can come from a range of professionals such as Health, Education and Social Work. Prior to a referral being made, the appropriate Health and Education professionals must consult with each other to ensure there is joint agreement about the referral to ASCA being made: Education also to be agreed with Educational Psychologist and Health Social Work also to be agreed with Health and Education Health also to be agreed with Education At the triage meeting, the referral is discussed and one of the following decisions made: Requires further information – return to referrer [follow same process when returned] Requires clarification – general paediatric appointment given Agreed ASCA referral – goes on the ASCA pathway General Appointment: Appointment made for the appropriate community paediatrician. Once the appointment has taken place, the referral can then go onto the ASCA process if necessary. ASCA Referral: 1. Send out consent paperwork. Wording in the covering letter would need to be changed to say “…return by ……….. [two weeks]. If consent paperwork is not returned, the ASO will contact parent by phone to see if they have received the consent, if not received, send a second copy. If paperwork has been received and not returned, clarify with parent/carer if the referral is still required, if yes, please return the consent form within two weeks. If the consent is not returned within the two weeks, the original referral will be returned to the referrer with an explanatory letter. 2. Agree diagnosis date with all professionals involved, however to facilitate a date no later than 20 weeks from acceptance on pathway, the date will be set when the majority, if not all of the professionals can attend. 3. Request reports from relevant professionals e.g. community paediatricians; education; speech and language therapy and psychology + other professionals mentioned on the referral. 4. Reports must be returned three weeks prior to the diagnosis meeting. 5. Diagnosis meeting must, as a minimum, include community paediatrician, school representative and two other professionals. If additional professionals invited to the meeting cannot attend, submitted reports will be used to help give evidence to form a diagnosis. 6. Every effort should be made by all services to ensure that pre-arranged meetings proceed as agreed. There will be occasions where a professional at short notice (most likely because of illness) will be unable to attend an ASCA meeting. On such occasions, the meeting should go ahead wherever possible. It may, for example, be possible for a service to substitute for an absent colleague. A further consideration to ensure that the meeting proceeds would be for the remaining professionals to agree a recommendation File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 6 which will become the decision of the meeting subject to consultation with the absent professional on their return to work/next availability. Occasionally there are exceptional cases where the usual ASCA process will be impossible to follow eg where a child has been off school long term. On these occasions, relevant professionals should consult with each other to agree a practical and reasonable way forward. 7. If diagnosis cannot be agreed or the conclusion is that further assessment is required, the child will be referred to FAST. Where it is clear that no diagnosis of autism could be made, the reasons for this should be explained to the parents. A referral to FAST should NOT be made simply because the parents request this. Along with the ASCA reports, a front page explaining why an outcome could not be reached should be attached prior to sending to FAST to give as much background information as possible and must include a copy of the ICD-10. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 7 ASD ASSESSMENT PATHWAY REFERRAL FORM All sections of this form must be completed. A Doctor’s Clinic letter with all details requested is acceptable instead of the Referral Form. When a referral is being made by the school, the referral must be agreed and supported by the school’s link educational psychologist as well as a health professional. Child’s Name: ______________________________________________________________ DOB/CHI: ___________________ GP Practice: __________________________________ GP Practice Address: ________________________________________________________ Parent’s Name: ____________________________________________________________ Address: __________________________________________________________________ _________________________________________________________________________ _________________________________________________________________________ Tel Nos: __________________________________________________________________ [incl mob] _________________________________________________________________________ School / Nursery: ___________________________________________________________ Head Teacher: _____________________________________________________________ Educational Psychologist: ____________________________________________________ Referral discussed fully and agreed with parents/carers Yes Discussed and agreed with educational psychologist? Yes / No If appropriate, has this referral been discussed with the child?: Yes / No Any previous diagnosis/assessments: ________________________________________ _________________________________________________________________________ _________________________________________________________________________ _________________________________________________________________________ Medication: _______________________________________________________________ _________________________________________________________________________ _________________________________________________________________________ _________________________________________________________________________ File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 8 Reason for requesting this referral: _____________________________________________ _________________________________________________________________________ _________________________________________________________________________ Please include observations / concerns about:: a. Language and communication e.g. language development and social use of language: b. Social skills and relationships/social interaction e.g. eye contact, turn taking: c. Play/imagination/flexibility of thinking e.g. pretend play, routines and repetitive behaviours: d. Any other significant information [e.g. significant family context issues, social factors etc. Information required with the referral [as appropriate] Copies of any existing assessments e.g. Please tick Griffiths School Observation Schedule ISP Speech and Language Reports Occupational Therapy Reports Any Clinical Letters Confidentiality All reports submitted will be shared with other professionals. Please ensure you are happy with the content and edit accordingly. If this is not possible please contact the Admin Support Officer detailed at the bottom of this referral form. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 9 Other Professionals Involved: Professional Address Email & Tel No School Doctor Consultant Paediatrician [Acute/Community] Speech & Language Clinical Psychologist Ed Psychologist/PSHV Occupational Therapist Health Visitor Social Worker Hospital Consultants General Practitioner Head Teacher Any Other File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 10 Referred by [please print]: _________________________________________________________________________ Designation: _________________________________________________________________________ Signed: _________________________________________________________________________ Location: _________________________________________________________________________ Telephone Numbers: _________________________________________________________________________ Date: _________________________________________________________________________ Health/Education Professional Discussed and Agreed with: Name:____________________________________________________________________ Signature: ________________________________________________________________ Designation:_______________________________________________________________ Telephone Numbers:________________________________________________________ Please send completed form to the appropriate Admin Support Officer [ASO]: G&NEF CHP Lindsey Kidd Adamson Hospital Bank Street Cupar KY15 4JG Tel: 01334 651253 File Name: ASCA Manual Owner: Mary Paris K&L CHP Hazel Laughlan Seaview Ward Whyteman’s Brae Hospital Kirkcaldy KY1 2ND 01592 645225 Version 3 © NHS Fife Children’s Services D&WF CHP Jill Hastie Child Health Office Lynebank Hospital Dunfermline KY11 4UW 01383 565495 Created on: April 2012 Review date: April 2014 11 Consent and Information Gathering Process from Parent/Carer to ASCA 1. When agreed that referral is appropriate and the child has been entered on the database the information leaflet, consent form and parental questionnaire should be sent to parents. 2. Instances where parents are separated, consent will be required from both/either parents or the parent with parental rights. 3. Consent and parental questionnaire should be returned from parents/carers within two weeks. If consent not received, the ASO’s will contact the parents/carers by phone, to ascertain whether paperwork has been received or is still required. If necessary resend paperwork. If consent not received after a further two weeks, referral returned to originator. 4. Once the parental consent and questionnaire are returned, a date for the Diagnosis meeting will be agreed within 20 weeks, with the paediatrician and education representatives, including the educational psychologist, as core members of the group. 5. The parental consent and questionnaire will then be sent to the professionals involved. 6. Subject to Information Sharing Policy [see Appendix II] File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 Dunfermline & West Fife Community Health Partnership 12 Child Health Office Lynebank Hospital Halbeath Road Dunfermline KY11 4UW Child Health Tel: 01383 565495 Email: jill.hastie@nhs.net Date April 2012 Your Ref Our Ref Enquiries to Insert Patient Address Block Dear RE: INSERT CHILD’S NAME, DOB/CHI, ADDRESS Your child ___________________ has been referred for assessment for a possible autism spectrum disorder. Enclosed are: A leaflet for you explaining the ASCA process A consent form for participation in the process, gathering and sharing of relevant information An information gathering questionnaire If you wish your child to be assessed, please sign the enclosed consent form, fill in the questionnaire and return both in the enclosed addressed envelope. We will then contact you to arrange attendance to receive feedback on the outcome of the diagnosis meeting. You will be given an appointment by a community paediatrician and various other professionals to start your child’s assessment, there will then be a date arranged in about 20 weeks time for the professionals involved to discuss any possible diagnosis and talk to you about the outcomes of the assessment and the way forward. Please complete and return both documents within three weeks. If we do not hear from you within that time, we will assume that you do not wish your child to be assessed and their details will be removed from the system. Yours sincerely JILL HASTIE Admin Support Officer Enc File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 13 INFORMATION LEAFLET – ASCA PATHWAY Your child ________________ has been referred by _______________________________ for an assessment of a possible autism spectrum disorder [ASD]. This process is as follows: Tier 1: Consent for Information Gathering and Sharing Following receipt of your consent we will write to professionals already involved with your child to ask for assessment reports and other relevant information. Tier 2: Community Assessment There will be a community assessment for your child. The people involved will be: o Your child’s school teachers and the educational psychologist from their school o A community paediatrician o A speech and language therapist o A clinical associate psychologist If you have any questions around this process, you will have an opportunity to discuss them at the first assessment meeting. You may of course also wish to discuss the process with educational professionals such as your school head teacher or link educational psychologist to your child’s school. Assessment will take place in your home, school and/or clinic. This may take up to four months and will include: o A detailed history from yourselves o An observation of your child at home and school o An educational psychologist’s assessment o A speech and language assessment o A psychological assessment You will receive all assessment reports following the Diagnosis meeting; however some individual services may provide you a copy of their report in advance of the meeting. Following completion of the assessments, there will be a meeting arranged at the school where a multi-agency decision will be made as to whether there is enough information available to: o Diagnose an ASD confidently. If this is the case, a diagnosis will be given at this point o Be sure your child does not have an ASD o Decide that more information and more specialist assessments are required [referral on to Tier 3] File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 14 As part of this discussion it may be decided that your child needs further assessments for alternative diagnoses. You will be invited to attend a feedback session at the end of the diagnosis meeting with some of the professionals involved. If you disagree with the outcome of the diagnosis meeting you have the right to request a further specialist assessment. Tier 3: Specialist Assessment If a definitive decision cannot be reached at Tier 2, all the information that has already been gathered will be passed on to, and will form an essential part of the assessment by, the specialist Fife Autism Spectrum Team [FAST]. This team consists of a group of professionals from various disciplines who have had extensive additional training and experience in assessment and management of ASD. This team will arrange for your child to come in, with yourselves, for a half day assessment. This may be several months later. This assessment will consist of: o An extension of information gathering from yourselves o A detailed assessment of your child’s learning ability and style [cognitive assessment] o A specific autism assessment tool [ADOS] where the child is observed during structured activities which assess your child’s abilities in communication, interaction and creativity At the end of this assessment the team will talk to you and discuss the outcome. At the end of Tiers 2 and 3, we will plan any necessary further interventions and support in discussion with you. You will receive a written report. If a diagnosis of ASD is not given, further investigations or support will be organised as required. If you have any questions or require any further information please contact the Admin Support Officer in your area, as detailed below. Please send completed forms to the appropriate Admin Support Officer [ASO]: G&NEF CHP Lindsey Kidd Adamson Hospital Bank Street Cupar KY15 5JG Tel: 01334 651253 File Name: ASCA Manual Owner: Mary Paris K&L CHP Hazel Laughlan Seaview Ward Whyteman’s Brae Hospital Kirkcaldy KY1 2ND Tel: 01592-645225 Version 3 © NHS Fife Children’s Services D&WF CHP Jill Hastie Children’s Services Office Ward 12, Lynebank Hospital Dunfermline KY11 4UW Tel: 01383-565495 Created on: April 2012 Review date: April 2014 15 ASCA Pathway Consent Form [Please note to maintain the objectivity of the Diagnosis Meeting, Parents will be invited to Part 2 only] Child’s Name: _______________________________ DOB/CHI__________________ Address: _________________________________________________________________ I understand my child has been referred for assessment of an autism spectrum disorder. Yes No I give my permission for information to be gathered from professionals/services who already know my child. Yes No I give permission for the gathered information to be shared with other involved professionals. Yes No I give consent for the assessment team, as detailed in the enclosed letter, to be contacted and for assessment meetings to be set up as necessary. Yes No I give consent for the assessment team to be contacted and a Diagnosis Meeting to be arranged once all assessments are complete. Yes No I would prefer the feedback from the Diagnosis Meeting to be given by the following professionals [please tick up to two professionals]: Your child’s school teachers and/or the educational psychologist from their school A community paediatrician A speech and language therapist A clinical associate psychologist If, for any reason, your chosen professionals are not available; others members of the Diagnosis team will provide feedback. NAME: SIGNATURE: DATE: File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 16 INFORMATION FROM PARENTS/CARERS Child’s Name: Date of Birth: Father’s Name: Address: Mother’s Name: Name of School: Home telephone number: Date completed: We know that this questionnaire is extremely long – so we are grateful to you for taking the time to complete it. Please do not worry if you cannot answer every question. There will be opportunity to discuss these at the appointment. It will be most helpful if you give details or tell us about an actual incident rather than Yes or No. BIRTH HISTORY 1. Did you have any difficulties during pregnancy? 2. Were you on any medication during pregnancy? 3. Was your child born at the time expected? Yes / No If not, was he/she earlier / later? How many weeks early / late? What was his/her birth weight? 4. Did you have a normal delivery? Yes / No If not, could you please describe what happened? 5. Did your baby have any problems immediately after birth? Yes / No If yes, please describe: 6. Did he/she have to be in special care? Yes / No File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 17 7. How were things in general, for both mum and baby, in the early weeks after the birth? MEDICAL HISTORY 1. Has your child had any serious illness? Yes / No If yes, please describe: FAMILY HISTORY 1. Do you feel anybody in the extended family has any problems similar to your child? Yes / No If yes, please describe: 2. Has anyone in the extended family ever been diagnosed as having an autism spectrum disorder? Yes / No 3. Does anyone in the family have any emotional or mental health difficulties? Yes / No 4. Does anyone in the family have any learning or language difficulties? Yes / No MOTOR DEVELOPMENT 1. Did you have any concerns about your child’s physical development, e.g. floppiness? Yes / No 2. At what age did he/she: Sit unsupported: Crawl: Walk: File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 18 3. Do you have any concerns about your child’s physical development/co-ordination now? Yes / No If so, please describe: 0 – 1 YEAR 1. How would you describe your child as a baby? 2. How would you he/she let you know when he/she needed to be fed? 3. What comforted him/her when she was upset? 4. When you went to see him/her in their cot in the morning, was he/she pleased to see you? Yes / No How would you know? Around 6 – 8 months did he/she put their arms up to be lifted? Yes / No Would he/she get upset if you walked out again? Yes / No 5. At around 6 – 7 months, did he/she enjoy you playing with him/her? Yes / No 6. If given toys to play with, what would he/she actually do? E.g. play with them appropriately, ignore them or throw them. 7. If you had to keep him/her happy on your lap for a while, say in a waiting room, could you do it just by chatting to him/her? Yes / No 8. If you smiled and made faces at him/her, would he/she do the same back? Yes / No 9. Did he/she enjoy traditional lap games? E.g. This little piggy, Peek-a-boo etc. Yes / No File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 19 10. Was it difficult to get his/her attention? Yes / No 11. Did you ever wonder if he/she might be deaf? Yes / No AROUND 1 – 2 YEARS 1. Did he/she point at things he/she wanted? E.g. food or a toy. Yes / No 2. Did he/she point out interesting things and look to see whether you were interested? E.g. cars in the street, animals. Yes / No 3. When you took him/her out in their buggy, would he/she look at things you pointed at? Yes / No 4. Did he/she bring things to you for help? Yes / No Did he/she bring things to show for interest? Yes / No 5. Did he/she get upset if separated from you? Yes / No 6. Did he/she ever go through a stage of tip-toeing when he/she walked? Yes / No 7. What was his/her play like in his/her second year – can you give examples? Would he/she feed and talk to a teddy – or do other “pretending” play – give examples: 8. How did he/she react to something spinning, like the washing machine or a toy top? 2 – 3 YEARS 1. If he/she had tantrums, what caused them? How easy was he/she to distract or comfort? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 20 2. Did you have problems taking him/her out, say to shops or on the street? Yes / No 3. If he/she wanted something that he/she could not reach, what did he/she do? COMMUNICATION 1. Did he/she babble? Yes / No 2. What were his/her first words? At what age? 3. When did he/she go on to link words into simple sentences? At what age was he/she using simple sentences to: 4. Get what he/she wanted? Show you something interesting? Start a conversation? Ask for information and listen to your answers? Does he/she now talk about a range of topics? Yes / No If not, what does he/she prefer to talk about? 5. Does he/she notice if you are bored or not listening to him/her talking? Yes / No 6. Does he/she start conversations off, listen to your answers and then answer so that the conversation goes back and forth? Yes / No 7. Is there anything unusual about his/her tone of voice, his/her accent, the way he/she speaks or his/her use of loud and soft? Yes / No 8. Has he/she ever exactly repeated the things you say? Yes / No Is yes, at what sort of age? How long did it last? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 21 9. Has he/she ever produced “chunks” of language that you recognise from somewhere else? Yes / No 10. Has he/she ever repeated phrases over and over again? Yes / No Give examples: 11. Has he/she made up words of their own? Yes / No Give examples: 12. Does he/she ever tend to talk non-stop at you? Yes / No 13. Does he/she ever tend to take language literally. E.g. pull your socks up? Yes / No Can you give an example? 14. Do you feel your child uses eye contact effectively? E.g. to catch your attention in a crowded room. Yes / No 15. Can you tell how your child is feeling from his/her facial expression? Yes / No 16. Does he/she understand body language, gestures and facial expressions? Yes / No If he/she has a problem – what difficulties does he/she have? Does he/she know how you feel by your facial expressions? Yes / No 17. If asked to do so, could he/she “put on” a disgusted face? Yes / No SOCIAL BEHAVIOUR 1. How does he/she get on with children of his/her own age? 2. How does he/she get on with adults? 3. Are there any problems: Making friends Meeting people he/she knows File Name: ASCA Manual Owner: Mary Paris Yes / No Yes / No Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 22 4. Meeting new people Yes / No Coping in a strange situation Yes / No How does he/she react if he/she is hurt? If you are hurt e.g. does he/she comfort you? Yes / No 5. Are there any problems in different social situations? E.g. supermarket, big gatherings etc? Yes / No 6. Can he/she “put themselves in other people’s shoes” and understand how other people feel? Yes / No 7. Does he/she ever come out with embarrassing remarks in an inappropriately loud voice? Yes / No PLAY BEHAVIOUR 1. Typically between 1 and 2 years what would his/her favourite play be? 2. Does he/she line up toys or objects? Yes / No If so, at what age? Does he/she get upset if people then move the toys or objects? Yes / No 3. Does he/she enjoy rough and tumble play? Yes / No 4. Give an example of his/her pretend play at around age 3. 5. How does he/she relate to other children? E.g. ignore, watch, approach, make contact, other? 6. Does he/she: Take turns Yes / No Share Yes / No Wait for his/her go Yes / No File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 23 Ask others to join in Yes / No Win or lose gracefully Yes / No Understand rules in games like football Yes / No 7. What activities does he/she enjoy most now? 8. What does he/she watch on television or video? Does he/she have favourite programmes or videos that he/she watches over and over again? Yes / No What are these? Does he/she rewind parts of the video repetitively? Yes / No OTHER BEHAVIOURS 1. Has he/she ever done any of the following: [give approximate age] Flapped his/her hands vigorously Spun round and round Smelt things frequently before using or eating Licked things that one usually does not lick Smeared things like soap, creams excessively Liked to touch and stroke things, particularly of specific textures that he/she seems to enjoy. E.g. fur, silk, etc Used your hands to do things Shown an extreme dislike of getting his/her hair brushed Complained about clothes being uncomfortable or scratchy Avoided getting his/her hands dirty Have you ever noticed any of the following: Facial or body twitches Blinking eyes a lot Making funny noises in his/her throat Sniffing or coughing a lot when he/she has not got a cold Yes / No Yes / No Yes / No Yes / No Yes / No Age ___ ___ ___ ___ ___ Yes / No Yes / No Yes / No Yes / No ___ ___ ___ ___ Yes / No ___ Yes / No Yes / No Yes / No Yes / No ___ ___ ___ ___ 2. Does he/she ever cover his/her ears to sound? Yes / No 3. Has he/she ever shown any fascination with lights, patterns, shiny things, water, spinning things? Yes / No If yes, please describe: File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 24 4. Has he/she ever seemed unaware of hot, cold or pain? Yes / No 5. Has he/she ever needed an object with him/her all the time and carried it around? Yes / No If yes, please describe: 6. Has he/she ever been fascinated by, or obsessional about anything? Yes / No If yes, please describe: 7. Have you ever felt that he/she was particularly knowledgeable about anything or collected unusual things? Yes / No If yes, please give details: 8. What happens if you change his/her routine or the way things are done in your family? Please give details: 9. Does he/she have any rituals i.e. are there certain things that he/she has to do a certain way, perhaps in relation to: Mealtimes Bedtime Toys Where things are placed Yes / No Yes / No Yes / No Yes / No If yes, please give details: 10. Have there ever been any problems if you moved things e.g. furniture, his/her possessions etc? Yes / No If yes, please describe: 11. Does he/she eat a wide range of foods? Yes / No Will he/she try new foods? Yes / No 12. Are there any other problems with behaviour that you are concerned about? Yes / No If yes, please give details: File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 25 POSTURE AND MOVEMENT [please tick each box you feel is appropriate] 1. Which of the following words describe how your child moves e.g. walking, running, climbing? Stiff Awkward Clumsy Often falls Bumps into things Accident Prone Trips over feet Move slowly Stays away from others Agile 2. 3. When sitting in a chair to play or at mealtimes does your child? Sit upright Slump Lean to one side Fidget Sit normally Sit briefly Which of the following does your child find difficult? Jump Skip Hop [right leg: left leg] Catch ball [two hands] Throw ball Walk along wall/kerb Hit with bat Ride a bicycle/tricycle Climb File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 Dunfermline & West Fife Community Health Partnership Child Health Date April 2012 Your Ref Our Ref Enquiries to 26 Children’s Services Office Lynebank Hospital Halbeath Road Dunfermline KY11 4UW Tel: 01383 565495 Email: jill.hastie@nhs.net Insert Address Block Dear Dr RE: INSERT CHILD’S NAME, ADDRESS AND DOB/CHI ____________________________ has been referred to ASCA [Autism Spectrum Community Assessment] for assessment for a possible Autism Spectrum Disorder. I have enclosed a copy of the letter that has been sent to the parents for your information. Yours sincerely JILL HASTIE Admin Support Officer Enc File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 Dunfermline & West Fife Community Health Partnership Child Health 27 Children’s Services Office Lynebank Hospital Halbeath Road Dunfermline KY11 4UW Tel: 01383 565495 Email: jill.hastie@nhs.net Date April 2012 Your Ref Our Ref Enquiries to Insert Address Block Dear RE: INSERT CHILD’S NAME, ADDRESS AND DOB/CHI As you may know ____________________________ has been referred for an Autism Spectrum Community Assessment and as a result you are requested to provide an assessment report. If the child is not already known to your service, please make arrangements to carry out an assessment and forward your report to me as soon as available. These reports will be discussed at the multi-agency Diagnosis meeting. The date of the meeting is ____________________ at _____________ in __________________________. The reports will be required three weeks prior to this meeting date for onward circulation to the professionals involved. Yours sincerely JILL HASTIE Admin Support Officer Please note that any information shared is subject to the Information Sharing Protocol agreed between NHS Fife and Fife Council Education Services [see Appendix II]. If required a signed copy of this protocol can be obtained from Business Manager – Children’s Services. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 Dunfermline & West Fife Community Health Partnership Child Health 28 Children’s Services Office Lynebank Hospital Halbeath Road Dunfermline KY11 4UW Tel: 01383 565495 Email: jill.hastie@nhs.net Date April 2012 Your Ref Our Ref Enquiries to Insert Address Block Dear RE: INSERT CHILD’S NAME, ADDRESS AND DOB/CHI ____________________________ has been referred for an ASD Assessment to ASCA [Autism Spectrum Community Assessment] To help us with this assessment we would be most grateful if you would copy us any relevant reports and clinic letters. We have permission from the parents to ask you for this information. These reports will be discussed at the Diagnosis meeting. The date of the meeting is ____________________ at _____________ in __________________________. The reports will be required three weeks prior to this meeting date for onward circulation to the professionals involved. Yours sincerely JILL HASTIE Admin Support Officer File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 29 GUIDELINES FOR PROFESSIONALS INVOLVED IN ASCA Introduction ASCA stands for Autism Spectrum Community Assessment; it is also known as ASD Tier 2 Assessment. It is a model that aims to share information and jointly plan assessment, diagnosis and support for children with suspected Autism Spectrum Disorder. This guidance is for all professionals involved in the assessment process i.e. Class teachers / special needs teachers Educational psychologists Paediatricians Speech and language therapists Occupational therapists Clinical associate psychologists [see Information Sharing – Appendix II] Guidance for Assessments Following agreement by Community Paediatricians to place the referred child on the ASCA pathway, the Admin Support Officer [ASO] will arrange the date of the Diagnosis Meeting. This date will be set in agreement between the paediatrician and relevant education professional. Once the date has been agreed this will be circulated to all professionals involved with a request for new or existing reports to be sent to the appropriate ASO three weeks in advance of the meeting. The reports will then be forwarded to the professionals only for preparatory reading. As the purpose of the meeting is to make a joint decision, authors of reports must ensure that the reports do not include a decision on diagnosis. The ASO will also ensure that an ASD information pack is sent to the Paediatrician to give to the Chair. The Chair will provide the pack to parents/carer during the feedback process if a positive ASD diagnosis is made. If a diagnosis is not made, the pack should be returned to the ASO. Professionals should use whatever assessment tools they would usually deem appropriate for consideration/exclusion of ASD. Colleagues should discuss within their professional groups which tools are most appropriate. As there will now be only one meeting for all the professionals to share their assessments/reports, it is imperative that professionals consult with each other in advance and in good time. Professionals should ensure: Ensure effective information sharing with each other Liaise with each other to agree sharing of tasks Ensure tasks are carried out within reasonable timescales Avoid duplication of tasks and use context with which they are most familiar as main focus for assessment Guidance for Diagnosis Meeting Refer to Diagnosis Meeting Agenda Assessment reports should be sent to appropriate ASO three weeks before the date of the meeting for distribution to all professionals prior to the meeting. This is to give professionals enough time to read the reports. These reports will not be sent by ASO’s to the parents at this time. However some services may wish to share their reports with parents in advance of the diagnostic meeting. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 30 Diagnosis meeting must, as a minimum, include community paediatrician, education representative and two other professionals. Agenda should include: 1. Introductions 2. Explanation of the purpose of the meeting: Decision to be made following reports and discussions and going through ICD-10 Professionals must not give opinions until after reports, discussion and ICD-10 have been fully discussed Note that ICD-10 is just one of a range of assessment tools used in the process and diagnosis should not hinge on ICD-10 alone There is a need to reassure all that there is no pressure to make a diagnosis, indeed that the threshold for referral to Tier 3 should be low Also that the diagnosis is for ASD only – the team should not be make other diagnoses as part of this specific process Reminder that children with possible additional problems or complex differential diagnoses may not be diagnosed at Tier 2 as they need more detailed assessments. If this is the case they should be referred to Tier 3. However, some cases, despite being complex, are clearly diagnosable for ASD at Tier 2 due to the clarity of their autism. If this is the case, it is reasonable to make a diagnosis at Tier 2 rather than refer on to FAST. Complex Cases When considering the effect of complexities on the diagnosis of an ASD in a child at Tier 2, the main consideration is whether the complexity is going to complicate making a diagnosis. For example: ADHD that is fully diagnosed and managed might not need referral onto Tier 3 ADHD that comes up as a diagnostic possibility in the middle of an assessment of ASD almost certainly needs addressed first by the appropriate professionals When professionals are unsure if the presentation is ASD or ADHD it will need to go to Tier 3. Learning disability that is fully assessed and understood might not need to go to Tier 3, while a possible learning disability complicating the diagnosis will. If a child with significant complexity is seen at Tier 2 and all are in agreement that the child does not have a diagnosis of ASD, it will NOT be necessary for the case to be referred on to Tier 3. However, follow up by the appropriate service should be arranged. If a child is in the middle of a process of major change e.g. going from nursery to primary school, consideration my be given to delaying the ASCA assessment until they have settled into their new environment, provided that the parents are in agreement with this. 3. Team to speak to brief summary [paragraph] – what they have done and what they have found – remind team not to give a definitive opinion. 4. ICD-10 criteria [A – E] should be led ideally by a professional familiar with the criteria. Go through A to E, discussing criteria and assessments carried out. Diagnosis can only be made if there is evidence from the joint assessments and ICD-10 that the criteria are fulfilled, however diagnosis is not based on this alone. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 31 Record on ICD-10 form which criteria are met – this form should then be added to child’s notes. This can be useful for Tier 3 referral. 5. Individuals decide: a. ASD b. Not ASD c. Referral to Tier 3 6. Group decision – any dissension, however minor, should lead to a referral to Tier 3. 7. Next Steps: Team should make a decision regarding who meets with the family to discuss the outcome of the meeting, bearing in mind the family’s wishes from previous discussion. Every effort should be made to avoid keeping parents/carers waiting for the outcome of the meetings decision. Any future assessments/interventions should be discussed with the family at the feedback meeting. The team should identify the review mechanism [whether in health or education] considering planning and intervention. Guidance for Feedback to Parents 1. Parents/carers attending a feedback meeting should not be kept waiting beyond their appointment time. 2. Inform the parents of the team decision. Parents may have a range of emotions. Be sympathetic, transparent and concise. Acknowledge and validate parent’s response and emotions. 3. Explain how the decision was reached and why. Allow time to discuss questions and concerns. 4. If a decision is made to refer onto FAST, it should be explained to the parents/carers that the referral to this Tier 3 service can be withdrawn if they so wish. 5. If a diagnosis of ASD is made, an information pack should be given to the parents. 6. Copies of the final report and all professional reports will be sent to the parents. In all cases a copy of the report summary will be sent to the GP and the referrer. 7. Identify an appropriate professional that the family can contact with any questions or feedback they may have about the process following the diagnosis meeting. Ensuring that the Views of the Child or Young Person is heard It is a political and legislative requirement to seek the views of children and young people about decisions that affect them (the Children (Scotland) Act 1995; Article 12 of the United Nations Convention on the Rights of the Child (UNCRC) 1989; the Standards in Scotland’s Schools etc. Act 2000; The Education (Additional Support for Learning) (Scotland) Act 2004). File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 32 In all assessment and planning processes, good practice starts with listening carefully to children and their families about what is important to them. In addition to the political and legislative right, children and young people have valuable insight into their own needs and circumstances which is important to seek and record. In the ASCA process, children and young people have the right to: the appropriate information the opportunity to give agreement and express their views knowledge of what is happening support to understand why A flexible and reflective approach is required to adapt to the needs of each individual. Situations should be facilitated to enable young people to understand what is happening and give their views. This means supporting them to think in advance about their thoughts and feelings and what they may want to share with others. Meetings & Cases: Exceptional Circumstances Every effort should be made by all services to ensure that pre-arranged meetings proceed as agreed. There will be occasions where a professional at short notice (most likely because of illness) will be unable to attend an ASCA meeting. On such occasions, the meeting should go ahead wherever possible. It may for example be possible for a service to substitute for an absent colleague. A further consideration to ensure that the meeting proceeds would be for the remaining professionals to agree a recommendation which will become the decision of the meeting subject to consultation with the absent professional on their return to work/next availability. Occasionally there are exceptional cases where the usual ASCA process will be impossible to follow eg where a child has been off school long term. On these occasions, relevant professionals should consult with each other to agree a practical and reasonable way forward. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 33 Autistic Spectrum Difficulties [School Based Assessment] To be completed by school senior management representative in conjunction with the link EP and school and support staff who know the child well and returned to the Admin Support Officer at least 3 weeks prior to the Diagnosis Meeting. Observation Record for School Age Children from Primary 2 upwards The assessment information covers the areas of additional support needs which are associated with autistic spectrum difficulties: 1. 2. 3. 4. Language and communication Social skills and relationships Thinking and behaving flexibly and creatively Co-ordination and hypersensitivities It will help inform an individual profile as part of a multi-agency assessment. Many children will have some difficulty in one or more of these areas at different times in their lives. Please answer the questions in the context of what is developmentally appropriate for the age or Tier of the child or young person. Name of school: Name of pupil: DOB: Class: Completed by: Date form completed: Age/Tier completed: Pupil/parental views on assessment: Assessment Profile [including pupil’s strengths, likes, dislikes, curricular attainments and File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 34 difficulties]: Strategies tried so far [please indicate what works well and what does not]: Less successful strategies? What works well? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 35 1. Language and communication Do you have any concerns re the pupil’s skills in this area? Yes No Please give examples and/or comments where there are areas of difficulty Yes No Please give examples and/or comments where there are areas of difficulty Level and/or subtlety of eye contact Use of gesture Understanding of gesture Appropriate facial expression Social use of smiling Integration of speech/ eye contact/ gesture Use of intonation – tone of voice, accent, the way he/she speaks Understanding of intonation Do you have any concerns re the pupil’s skills in this area? Instance of repetition or echolalia Frequency of inventing words File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 36 Repetitive memorising of strings of words or songs Understanding of metaphor e.g. “you need to pull your socks up” or literal understanding e.g. “run on the spot” Functional use of language Social use of language Reciprocal conversation skills eg social give and take or persevering on a topic Use of inference in written language Understanding of inference in written language 2. Social Skills and Relationships A. In Class Do you have any concerns re the pupil’s skills in this area? Yes No Please give examples and/or comments where there are areas of difficulty Turn taking skills Co-operation in groups Initiating contact with children Social behaviour, friendships File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 37 Participating in team games, understanding of rules Showing embarrassment Initiating contact with adults Showing empathy eg shows concerns if someone is hurt Recognising emotions Interaction with adults Understanding of hierarchies eg Head teacher role Interaction with other children 2. Social Skills and Relationships B In Playground Do you have any concerns re the pupil’s skills in this area? Yes No Please give examples and/or comments where there are areas of difficulty Turn taking skills Co-operation in groups Interaction with other children File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 38 Initiating contact with children Social behaviour, friendships Participation in team games, understanding of rules Showing embarrassment Initiating contact with adults Showing empathy eg shows concerns if someone is hurt What role does the child or young person assume in friendships? [E.g. a leader of a much younger child or follower of an older child?]. 3. Thinking and Behaving Flexibly and Creatively Do you have any concerns re the pupil’s skills in this area? Yes No Please give examples and/or comments where there are areas of difficulty Ease of coping with change e.g. a new environment Ease of coping with unexpected events Ability to modify behaviour according to situation Dependency on routine and structure Routine, repetitive or restricted patterns of behaviour File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 39 Creative use of objects in play [beyond their everyday purpose] Copying play from TV programmes Sorting and arranging behaviour Do you have any concerns re the pupil’s skills in this area? Yes No Please give examples and/or comments where there are areas of difficulty Yes No Please give examples and/or comments where there are areas of difficulty Understanding other people’s perspectives e.g. being able to put himself/herself in other people’s shoes Range of imaginative play Ability to write imaginatively Interest in fiction Pre-occupation with facts Does the pupil have any areas of special knowledge or interest 4. Co-ordination and Atypical Sensitivities Do you have any concerns re the pupil’s skills/ sensitivities in this area? Manipulation of small objects Fine motor skills File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 40 Pencil grip Organisational skills Balance and co-ordination skills Sensitivity to touch e.g. unaware of hot/cold or pain Likes to touch, stroke specific textures Dislike of getting hands dirty Sensitivity to smell Sensitivity to noise e.g. puts hands over ears Sensitivity to taste and/or texture Any other observations that are atypical for that age [please tick] Unusual gait Walking on tiptoes Jerky movements Flapping hands Rocking File Name: ASCA Manual Owner: Mary Paris Frequent blinking Odd or inappropriate noises Spinning Head banging Facial or body twitches Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 41 Any other observations/comments [please include any relevant information on how the pupil has presented in earlier years]. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 42 Autistic Spectrum Difficulties [School Based Assessment] To be completed by school senior management representative in conjunction with the link EP and school and support staff who know the child well and returned to the Admin Support Officer at least 3 weeks prior to the Diagnosis Meeting. Observation Record for Children in Nursery and Primary 1 or for those who have significant learning problems i.e. ASN Depts The interview covers the areas of additional support needs which are associated with autistic spectrum difficulties: 1. 2. 3. 4. Language and communication Social skills and relationships Thinking and behaving flexibly and creatively Co-ordination and hypersensitivities It will help inform an individual profile as part of a multi-agency assessment. Many children will have some difficulty in one or more of these areas at different times in their lives. Please answer the questions in the context of what is developmentally appropriate for the age or Tier of the child. Name of nursery/school: Name of child: DOB: Class: Completed by: Date form completed: Age/Tier Concerns: Parental views on assessment: Pupil views on assessment [if appropriate]: File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 43 Assessment Profile [including child’s strengths, likes, dislikes, curricular attainments and difficulties]: Strategies tried so far [please indicate what works well and what does not]: Less successful strategies? What works well? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 44 1. Language and Communication Comment on the child’s use of and/or understanding of the following: Yes No Please describe Does the child use appropriate eye contact? Does the child use hand gestures e.g. waving, arms up to be lifted? Does the child point to request an item? Does the child point to draw an individual’s attention to something of interest? Does the child use appropriate body language? Does the child use your hand as a tool and take/move your hand towards what they would like? Does the child follow an adults use of gesture e.g. would the child look towards what the adult is pointing at? Would the child come here then the adult uses a gesture? Does the child use a variety of facial expressions and direct these facial expressions towards another? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 45 Comment on the child’s use of and/or understanding of the following: Yes No Please describe Does the child understand the facial expressions of others? Does the child respond to environmental sounds e.g. telephone ringing? Does the child have some situational understanding e.g. is able to tell that it is lunchtime by listening to the sounds in the kitchen or knows it is bath time by seeing his pyjamas and hearing the bath running? Does the child respond to your tone of voice? Does the child understand words e.g. name being called, key words, simple instructions? Does the child understand pictures, photographs, symbols, text or numbers? Does the child use a range of sounds to babble? Does the child have any unusual sounds? Does the child use words to: Ask Comment To greet Get attention File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 46 Does the child echo or repeat words or short chunks of videos, songs * If the child is using language, comment on the child’s use of tone of voice, rate of speech and loudness * Repetition is a part of normal language development. Please comment whether the repetition is to an unusual extent or whether it is a true echo i.e. with the same intonation and usually not integrated with eye contact. 2. Social Skills and Relationships Comment on the child’s use of and/or understanding of the following: Yes No Please describe Is the child aware of and interested in others? Does the child copy facial expressions, gestures, actions and sounds? Can the child take turns with sounds/babble? Does the child smile in response to you? Does the child seek comfort when upset? Does the child initiate contact with another child? Does the child initiate contact with another adult? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 47 Comment on the child’s use of and/or understanding of the following: How does the child react when someone else is hurt? Yes No Please describe How would the child react if mummy is angry? How does the child react to strangers? Would the child bring and show you an object of interest? Would the child give you an object to get help with it? Would the child give you an object which they have found/ or to show you? How does the child ask for help? How does the child attract your attention to his/her activity? Does the child share toys? Can the child follow any adult’s eye gaze towards something of interest? Can the child use their eyes to direct an adult’s attention toward something which may be of shared interest? Can the child participate and anticipate within social games e.g. peek-a-boo, round and round the garden? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 48 Does the child enjoy these games? Would the child seek reassurance in an unfamiliar situation? How would the child do this? Play What does the child like to play with? What are the child’s favourite toys? Comment on the child’s use of and/or understanding of the following: Yes No Please describe Does the child play appropriately with cause and effect toys? Does the child have a special liking for bits of toys e.g. the wheels on vehicles, shiny parts or flashing lights? Would the child play appropriately with toy items e.g. take a toy telephone to his ear or move cars along the floor or mat? Does the child repeat play patterns to an unusual extent? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 49 Does the child like to line up, sort or arrange toys? Does the child have any unusual attachments to toys, objects or routines? Does the child engage in pretend play e.g. would he feed the dolly, put dolly to bed, take the cars to the garage? Can the child pretend to be mummy or daddy when playing? Would they dress up? Would they be able to understand and use an item beyond its intended purpose e.g. use a box to represent a car or a house? Would the child copy sequences of play from the television? 3. Thinking and Behaving Flexibly and Creatively How does the child respond to changes in routine? How does the child cope with new events or situations? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 50 Does the child show any routine, repetitive or restricted patterns of behaviour? Please give examples: 4. Co-ordination and Atypical Sensitivities Do you have any concerns regarding the child’s skills/ behaviours in this area? Yes No Any comments/observations Manipulation of small objects Fine motor skills Balance and co-ordination skills Sensitivity to touch e.g. unaware of hot/cold or pain Likes to touch, stroke specific textures Dislike of getting hands dirty Sensitivity to smell Sensitivity to noise e.g. puts hands over ears File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 51 Has the child ever done any of the following? Yes No Flapped his/her hands vigorously Spun round and round Smelt things frequently before using or eating Licked things that one usually does not lick Smeared things like soap, creams excessively Liked to touch and stroke things, particularly of specific textures that he/she seems to enjoy e.g. fur, silk etc Used your hand to do things Shown an extreme dislike of getting hair brushed Complained about clothes being uncomfortable or scratchy Avoided getting his/her hands dirty Have you ever noticed any of the following? Yes No Facial or body twitches Blinking eyes a lot Making funny noises in his/her throat Sniffing or coughing a lot when he/she does not have a cold 2. Does he/she ever cover his/her ears to sound? 3. Has he/she ever shown any fascination with lights, patterns, shiny things, water, spinning things etc. If yes, please describe: 4. Has he/she ever seemed unaware of hot, cold or pain? 5. Has he/she ever needed an object with him/her all the time and carried it around? If yes, please describe the object: 6. Has he/she ever been fascinated by, or obsessional about anything? 7. Does he/she eat a wide range of snacks? Will he/she try new snacks? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 52 Any other observations/comments Please describe any other unusual behaviours you are concerned about? Please include any relevant information about changes in behaviour/presentation since the child started nursery? File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 53 Diagnosis Meeting Agenda Chaired by Senior Staff Member from School Assessment reports will have been circulated in advance of this meeting NB: no minutes need to be taken. The completed copies of ICD10 [see page 54] and the ASCA Report Summary [see page 56] and where appropriate, the ASCA FAST Referral [see page 57] must be sent as soon as possible by the Chairperson to the Admin Support Officers. 1. Brief introductions 2. Purpose of meeting 3. Individuals summarised assessment reports [not giving opinion on diagnosis] NB: only key points will be discussed 4. Use ICD-10 criteria 5. Individual opinions sought 6. Decision to be made ASD Not ASD Referral to Tier 3 7. Next steps Who reports to family Outcome of feedback meeting to members of the Diagnosis meeting [email suffice] Further interventions or assessments Follow up / Review 8. AOCB File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 54 ICD – 10 research criteria for autism Criteria Evidence from reports A Presence of abnormal or impaired development before the age of three in at least ONE of the following: Receptive / expressive language use in social communication. The development of selective social attachments / reciprocal social interaction Functional or symbolic play B Qualitative abnormalities in social interaction in at least ONE of the following areas Failure to use eye gaze / facial expression / body posture and gesture to regulate social interaction Failure to develop peer relationships that involve a mutual sharing of interests, activities and emotions A lack of socio-emotional reciprocity shown in inappropriate response to others / modulating behaviour to context / weak integration of social / emotional and communicative behaviours C Qualitative abnormalities in communication, in at least TWO of the following areas A delay, or total lack of spoken language accompanied with no attempt to compensate through use of gesture or mime Relative failure to initiate or sustain conversational interchange where there is a reciprocal to and from responsiveness to the communication Stereotyped and repetitive use of language / idiosyncratic words or phrases Abnormalities in pitch, stress, rate, rhythm, intonation of speech D Restricted, repetitive and stereotyped patterns of behaviour, interests and activities – in at least TWO of the following areas Encompassing preoccupation with one or more stereotyped and restricted patterns that are abnormal in content or focus; or one or more interests that are abnormal in their intensity and nature but not in their content or focus Compulsive adherence to specific, non-functional routines or rituals Stereotyped and repetitive motor mannerisms eg hand flapping or twisting or whole body movements Preoccupation with part objects or non-functional elements of play materials (eg odour, feel, noise, vibration) Distress over changes in small, non-functional details of the environment E clinical picture not attributable to other disorders File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 55 Agenda for Feedback to Parents/Carers Should be minimum of two professionals 1. Feedback of decision 2. Brief explanation of how decision reached 3. Parent’s questions and concerns 4. Next steps, including review 5. If diagnosis given, give pack File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 56 Final ASCA Report Summary for Parents/Carers [To be returned to Admin Support Officers for Distribution] Child’s name: ……………………………………………………………… Address: …………………………………………………………………… Date of Birth/CHI: …………………………….. ………………………….has been assessed for a suspected autism spectrum disorder. The following professionals took part in the assessment and their reports are attached: 1 ………………………………………………………….. 2 ………………………………………………………….. 3 …………………………………………………………... 4 …………………………………………………………… 5 …………………………………………………………… 6 …………………………………………………………… The following decision was reached: Next steps: ASCA Chair Signature: ………………………… Date of Report: ………………... File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 57 Final ASCA Report Summary FAST REFERRAL [To be returned to Admin Support Officers with supporting paperwork for onward referral as soon as possible.] Child’s name: ……………………………………………………………… Address: …………………………………………………………………… Date of Birth/CHI: ………………………………………………………… The following professional groups took part in the assessment and their reports are attached: 1 ………………………………………………………….. 2 ………………………………………………………….. 3 …………………………………………………………... 4 …………………………………………………………… 5 …………………………………………………………… 6 …………………………………………………………… Please give reasons for onward referral to FAST enclosing a copy of completed ICD10. Any special requirements/information that the FASTeam should be aware of? Name [please print]: ……………………………………………………………………….. Signature: ……..……………………………………….... Date: ……………….............. Designation: …………………………………………….. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 58 Appendix I Evaluating the Feasibility and Acceptability of a New Model of Autism Spectrum Disorder (ASD) Assessment and Diagnosis by a Multi-Agency Community Based Team The WASP Project (West-Fife Autism Spectrum Pilot) Evaluation Report Executive Summary January 2009 Contributors: Wendy Simpson, Public Health, Playfield Institute, NHS Fife Carolyn Brown, Educational Psychology, Fife Council Zoe Claisse, Paediatrics, NHS Fife Emma George, Playfield Institute, NHS Fife Ruth Metcalfe, Clinical Psychology, NHS Fife Julia Neufeind, Playfield Institute, NHS Fife Nara Nisbet, Speech & Language Therapy, NHS Fife Lorna Watson, Consultant in Public Health, NHS Fife File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 59 Executive Summary Introduction National guidelines stress the importance of early diagnosis of Autism Spectrum Disorder (ASD) and intervention by multi-agency services to help children maximize their potential. At present in Fife there are three specialist ASD assessment teams that receive the majority of referrals. Waiting lists are approximately 18 months for this service and ASD diagnosis rates are 49%. This pilot was set up to investigate the feasibility and acceptability of assessing children in their school and community by local workers. The aim of this approach was to promote earlier identification of ASD; to reduce the number of children being referred unnecessarily to the specialist ASD assessment service and to provide seamless links to support in the child’s school and community. The study asked whether the local teams were able to make decisions about ASD diagnosis and whether their decisions were in line with specialists’ views; how long the process took; what factors influence the decision-making process; whether the process was feasible and whether the model was acceptable to the parents and workers involved. Method Workers were required to attend a planning meeting, then to carry out assessments of the child and finally attend a decision meeting where, as a group, they came to a decision about whether the child definitely had ASD, did not have ASD or needed to be referred for further assessment. Specialist observers were present to validate the decision. Interviews and focus groups were carried out by a researcher to assess the views of parents and workers. Results 17 children took part in the study from 11 primary schools in West Fife. Six were identified with ASD, three as not ASD and eight were referred for further assessment. 16/17 decisions were validated by the specialist observers. Excluding the case not validated, younger children under 8 were more likely to be given a diagnostic decision than those 8 or over (p<O.05). Those without co-morbidity were more likely to be given a diagnosis of ASD than to be referred for further assessment (p<0.05). The average length of time taken for the process was 18 weeks. In general, the model was found acceptable to parents and workers. They particularly appreciated the natural environment for the assessments and the wide range of information gathered from different sources. However, they found the process difficult, in particular setting up the meetings. Workers also felt they needed more information about how to carry out meetings, to make assessments and compile reports. Conclusions In conclusion, this pilot suggests that it is feasible to set up multi-agency community teams, based in schools, which are able to diagnose straightforward ASD cases and non ASD cases and which are also able to make decisions about when to refer to the specialist service, FAST. Although it was a relatively small pilot group, the results indicated that referrals to FAST for school aged children may be able to be cut by 50% if this model is rolled out, with 75% of younger children and 25% of older children being given a definitive decision. This would have a significant impact on waiting lists, which are currently unacceptably long. The majority of workers and parents involved were able to appreciate the benefits of this model of working in terms of earlier diagnosis, a more natural assessment environment and improved links to support. However, in practice there were many frustrations relating to dissemination of information about the model and the process. Future development of this model requires careful consideration of the views of participants expressed in the full report, the improvements they suggested and the staff training requirements outlined. In particular there is a clear need for dedicated administration support and a high quality, detailed information manual for parents and staff. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 60 Moreover, a plan for ongoing monitoring of the service would need to be created including audit of outcomes and validation of the decision-making process. Recommendations In the light of the conclusions of this pilot, the authors have agreed on the following main recommendations for service planning: 1. A roll-out sub-group should be set up to oversee the roll-out aims, materials and process. 2. A current study of clinicians’ time for taking part in this pilot will inform the roll-out plan. We would envisage the requirement for some re-configuration of health services and possibly the need for additional resources within some of the health service teams. There should be no need for additional resources for the education service. 3. A plan for ongoing monitoring of the service; audit of outcomes and validation of the decision-making process will need to be created. We would envisage some ongoing involvement of FAST in this process. 4. A manual should be compiled including: a. Clear guidelines for all staff about the step-by-step process for the two school meetings, the assessment process and the compiling of reports. b. Clear guidelines for staff about the actual decision process, including how to use the ICD-10. In particular, there is a need to reassure staff that there is no pressure to make a diagnosis, indeed that their threshold for referral to FAST should be low. Also that the diagnosis is for ASD only – the team should not be making other diagnoses as part of this specific process. c. A clear explanation for parents of the entire assessment / decision process and the care pathway, ( i.e. that this is Tier 2 of the process and that only more obvious cases can be diagnosed or ruled out at this Tier, but that it is an important part of the process of contextual information-gathering for FAST). This could also include guidelines for parents on how to explain the process and the condition (if diagnosed) to their child. d. All necessary printable paperwork e.g. standardised letters to parents and GPs, meeting agendas, screening tools, history-taking forms, etc. 5. Standard agendas should be created for both school meetings to ensure consistency of approach. The agenda for the 1st meeting should consist of: sharing current information; addressing parental concerns; planning joint assessments; and asking parents how they want to be involved in the decision-making process. The agenda for the 2nd meeting should include: presentation of assessment reports; use of ICD-10; decision-making; discussion of ongoing treatment/care plan, whatever the outcome; and informing the parents of the result if they have chosen not to attend the meeting. 6. Parents should not be present at the second meeting. However they should be clearly informed of the process of making a decision. To be informed following the meeting, they should be seen by the head teacher (or other school representative) and a clinician (preferably one who already knows the family). Training should be provided for these professionals to ensure effective and appropriate communication with parents about the outcome of the assessment/diagnosis process. 7. A protocol for the presentation of the final report should be developed. Initial assessment reports should be sent to all professionals involved and the parents in advance of the 2nd school meeting. 8. The multi-agency teams will take joint responsibility for the diagnoses and will be required to adhere to the agreed protocol. Assuming the protocol is adhered to, final clinical responsibility will lie with the area consultant paediatrician whose role it will be to verify, support and ultimately take responsibility for the team processes, assessments and decisions. 9. We would recommend that a permanent senior administrator post should be created. We would envisage that this post would be jointly funded by health and the council and would report to the joint ASD steering group. This post would act as general project manager for the roll-out, with the following main tasks: a. managing a central referral system including FAST referrals b. maintaining a database of all children in this system across Fife File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014 61 c. taking responsibility for setting up all school meetings d. planning an on-going training programme for staff e. organising the distribution of all necessary documentation – letters, manuals, assessment reports, final reports to parents and staff f. acting as a central contact point for all staff and parents involved g. planning the ongoing monitoring/audit process References Le Couteur A. National Initiative for Autism: Screening and Assessment (NIASA). National Autism Plan for Children (NAPC): Plan for Identification, assessment, diagnosis and access to early interventions for pre-school and primary school aged children with autism spectrum disorder (ASD). London: National Autistic Society; 2003. Medical Research Council (MRC). MRC Review of Autism Research: Epidemiology and Causes. London: MRC; 2001. Public Health Institute of Scotland (PHIS) Autistic Spectrum Disorders: Needs Assessment Report. Glasgow: PHIS;2001. Roberts, A. FAST (Fife Autism Spectrum Team) Report and Recommendations. Management, NHS Fife, August, 2008 Unpublished Report for Child Health Simpson W. & Hyland J. Families’ Views on Services for Autism. Unpublished Report for Department of Public Health, NHS Fife, 2003 Scottish Intercollegiate Guidelines Network (SIGN). Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders. A national clinical guideline. SIGN;2007. File Name: ASCA Manual Owner: Mary Paris Version 3 © NHS Fife Children’s Services Created on: April 2012 Review date: April 2014