1. Reflections from research and clinical practice Dr Lucia Whitney, CAMHS Consultant 17 th of November 2011

2. Not everything that steps out of line, and thus “abnormal”, must necessarily be “inferior”. Hans Asperger (1938)

3. We now talk about:  diversity vs. disability  Neuro typical and neuro atypical brains  Is there an upside to autism?

5.  What’s new  What’s our experience  What’s worth remembering  Q&A  What’s next

6. Autism is a lifelong disorder that has a great impact on the child or young person and their family or carers. Autism describes behavioural differences and difficulties with reciprocal social interaction and communication, combined with restricted interests and rigid and repetitive behaviours. Core autism behaviours are typically present in early childhood, but features may not be apparent in some individuals until their circumstances change, such as going to school or transition to secondary school.

7. Autism was previously thought to be an uncommon disorder, but is now thought to occur in at least 1% of children. There is wide variation in availability of services. Delays in diagnosis affect access to services. Coordination between health and other services is a key element to improving care.

8. ◦ Healthcare professionals should consider the possibility of autism if there are concerns about development or behaviour, but be aware that there may be other explanations for this. ◦ Take the child/young person’s and parent’s or carer’s concerns seriously. ◦ Use the NICE signs and symptoms tables to help identify possible autism. ◦ When considering the possibility of autism, ask about use and understanding of first language.

9. Be aware that: ◦ signs and symptoms should be seen in the context of overall development, and will not always have been recognised ◦ signs and symptoms in older children may have been masked ◦ it is necessary to take into account cultural variation, but do not assume language delay is accounted for by hearing difficulties or because English is not the family’s first language ◦ autism may be missed in those with an intellectual disability or those who are verbally able

10. Be aware that: ◦ autism may be under-diagnosed in girls ◦ important information about early development may not be readily available for some children, e.g. looked-after children and those in the criminal justice system ◦ signs and symptoms may not be accounted for by disruptive home experiences or parental/carer mental or physical illness.

11.  Community Paediatricians  Child Development Centre  Clinical Psychologists  Speech and language therapists  Educational Psychologists  CAMHS Psychiatrists and teams  Occupational Therapists  And many more…

12.  More like to be of older children  Associated with complexity, aggression, self harm, depression, eating problems, somatic symptoms, school issues, substance misuse etc.  Increased risk to themselves and others  Crisis presentations  Mental Health Assessments  Hospital admissions

13.  Engagement and multidisciplinary assessment  Parents/couple, Individual, Family  Chronology and Developmental history  Taking risks collaboratively and safely  Writing reports together with family  Children and parents groups  Working with other agencies: Education, Social Services, Voluntary organizations

14. Video: Parents 19:12-29

15.  Took problems seriously  Interested in how we were together  Took positions and made statements  Actively listened, never bored  Available, never timed  Helped us work together

16. Wear the T Shirt  Curious: Not knowing  Tentative: Available not pushing  Minimalistic: Don’t’ over talk/lecture

17. Curiosity and neutrality (Tentative and curious T Shirt) “The most single useful tip I have ever had for dealing with Andy is the line of questioning that leads him to say ‘I don’t know’. This is followed by ‘Can I make some suggestions’. At which point I give him three (acceptable to me) choices. This tip ought to come with a diagnosis of Asperger's.” Hypothesising (E.g. exploring hypothetical or future orientated questions) “To work out thoroughly a plan before we approach Andy with an idea and to be prepared.”

18. Availability and Flexibility [It is important] “Being able to speak to [Clinician] while we were on holiday and very unsure about our next move. When things go badly wrong it is really useful and supportive to have access to respected advice without having to wait for days for an appointment.” Reframing (E.g. From won’t to can’t.) “I understand a little better now how Andy thinks, I hope. I am more accepting of the things that he insists he cannot do.”

19. Tony Attwood reports that parents want and value treatments and services which empower them to care for and manage their own children. Services which emphasise partnership and collaboration between families and professionals. Attwood, T (1998) Asperger's Syndrome.

20.  Honesty  Playfulness and fun  Love, care and affection  Determination and imagination  Energy and special abilities  Consideration and helpfulness

21. In each area a multidisciplinary team (the autism team) should be set up. The core membership should include a: - paediatrician and/or child and adolescent psychiatrist - speech and language therapist - clinical and/or educational psychologist And should also include or have access to a: - paediatrician or paediatric neurologist - child and adolescent psychiatrist - educational psychologist - clinical psychologist - occupational therapist - other professionals who may be able to contribute to the assessment.

22. Autism team members should: ◦ provide advice to healthcare professionals about whether to refer for autism diagnostic assessments ◦ decide on assessment needs of those referred ◦ carry out the autism diagnostic assessment ◦ share the outcome of the assessment ◦ share information from diagnostic assessment with relevant services (if consent given)

23. Autism team members should: ◦ offer information about appropriate services and support ◦ have the skills to carry out diagnostic assessments for those with special circumstances ◦ consider carrying out the diagnostic assessment jointly with adult services if a young person presents at the time of transition to adult services.

24.  Separate ASD and ADHD teams/pathways?  Recent research shows that for the first few years is very difficult to separate them, often they are together, best to talk about neurodevelopmental team?  Where assessment begins and treatment start?  What treatment and support. Individual YP and parent coaching, family therapy/sibling support.  Education and training for professionals

25.  Any experiences to share?  Any questions or comments/feedback?  Any suggestions for developing services?  What will you take away?

27. “All you need is love. But a little of chocolate now and then does not hurt.”