1. 1 Connect to Autism “Building autism-friendly communities”

2. Learning objectives  Gain a better understanding of autism  Understand the sensory and communication differences displayed by people with autism  Be aware of how people with autism may present in your practice  Consider reasonable adjustments to make a visit to your practice more comfortable and useful  Understand how diagnosis can make a difference to people with autism  Examine and consider criteria for referral 2

3. History of Autism  1943/4 – described by Kanner (in USA) and Asperger (in Austria) as triad of impairments with variable IQ and language development - ‘not schizophrenic’  50’s and 60’s – unemotional parenting or childhood schizophrenia [‘autism’ in DSM is part of features of schizophrenia]  1970’s – Rutter abnormality in brain functioning – not schizophrenia  1977 – ICD 9, 1980 – DSM 3  Now 2013 DSM5 Autism Spectrum Disorder

4. Legislation and guidelines  2009 – Autism Act  NICE guidelines −2011 CG 128 assessment in children −2012 CG 142 assessment and management adults −2013 CG 170 management in children  2014 - NICE quality standards QS51  2014 – Think Autism – DoH autism strategy re- launch  2015 – statutory guidance for all health and social care staff on autism awareness training

5. What is autism  A lifelong neurodevelopmental condition  Strong genetic basis: may be in combination with an environmental trigger (one of two identical twins may have autism; the other may not)  Main differences (not all of them always present) : −Communication & social interaction/social awareness −Inflexibility of thought −Repetitive behaviour −Sensory processing/hyper/hypo-sensitivity to stimuli 5

6. What it’s not  Not Developmental Intellectual Disorder [learning disability] – though may co-exist −It is a learning difficulty – as processing difficulties  Not a mental health difficulty – though may co-exist, and people with autism may acquire mental health problems, for example through isolation  Not caused by bad parenting  Not caused by MMR injections  Not just present in boys/men: autism in girls is under- diagnosed because girls present differently 6

7. Recognition In Adults Social difficulties Rigid behaviors Resistance to change Problems with employment Difficulties in relationships Current of past contact with MH/LD services Sensory sensitivities History of bullying Poor educational outcomes In Children Parental concerns Language delay/impairment Impaired response to others Impaired interactions Eye contact and pointing Reduced imagination Restricted and rigid interests Problems with transitions

8. Core features of autism 8 Differences in Social understanding Differences in processing Sensory Differences Differences in communication

9. Result  Differences in social-emotional reciprocity and intuition  Differences in non-verbal understanding and expression  Problems making and keeping friends, and socially ‘fitting in.’  Fall into routines and rituals, with mannerisms and problems with change  Escape into interests that are not sociable  Can have sensory anomalies.

10. Its  It’s person who has problems processing certain information.  However how they cope depends on the person and their past experiences.

11. Prevalence 11  Recent research has indicated that changes in diagnostic practices may account for at least 25% of the increase in prevalence over time.

12. Why is diagnosis important  Enables self-understanding: “this is why I have always felt different – it’s a relief to know”  May increase confidence and aspirations  May facilitate greater independence  Can open the way to financial and practical support  Make sure that it’s what the person wants 12

13. Key messages 13 Spectrum condition so every person’s autism is different from another No cure but early diagnosis and specialist support can improve quality of life

14. An underlying difficulty: Theory of Mind  The ability to understand other peoples beliefs, desires, intentions, imagination and emotions  Usually not as well developed as in ‘neurotypicals’  Does everyone think like me??  She knows what I want without my having to tell her. 14

15. This can cause differences with:  Explaining own behavior  Understanding own emotions  Predicting the behavior or emotional state of others  Understanding the perspectives of others  Inferring the intentions of others  Understanding that behavior impacts how others think and/or feel  Joint attention and other social conventions  Differentiating fiction from fact 15

16. Differences in Communication We communicate though what we verbally say [or read] but more though how we say it and how our bodies express it. Autism can cause difficulties using non-verbal skills and reading the non-verbal skills in others.  Body language – poor recognition  Eye contact – atypical And when combined with theory of mind  Comprehension of meaning behind words - reduced  Humour and sarcasm – may not get it  Starting, maintaining and finishing conversations 16

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18. Restricted behaviours and interests Processing difficulties can result in:  Focusing on one or two intense interests. [often one that does not involve socialising]  Resistance to/ stress by change – having routines or rituals.  Having motor mannerisms or repetitive actions to calm or stimulate.  Verbal rituals

19. Sensory Processing  Some people with autism can be over responsive and/ or under responsive to sensory experiences.  When any of us is experiencing sensory overload we become more stressed. This can happen more often for people on the autism spectrum. 19

20. Sensory Integration 20 SENSORY INTEGRATION Organise and cross reference learning Organise equipment Interact with environment Focus on the priority in a situation Manage potential overload OUTPUTS WHAT WE: See Hear Touch Taste Smell HOW WE EXPERIENCE: Movement (Proprioception) Gravity (Vestibular/Balance) INPUTS AFFECTS HOW WE: And PAIN!! Inner body sensations

21. How does autism affect a person’s life? 21 Contact with people/strangers Distress Lack of understanding Cause offence, appear egocentric Friendships & relationships Difficulty in forming and maintaining throughout life Broken routine Anxiety Period of uncertainty Lack of structure and predictability can lead to anxiety distress Unmet expectations Anxiety, distress, anger

22. What this means for primary care 22  Could prevent them from speaking to a doctor – as need to −1) feel discomfort and recognise that something is wrong −2) think that need to contact someone else about it −3) think to communicate to make appointment −4) survive the process of making an appointment and attending surgery −5) work out what the Doctor will want to know

23. Also  They could misinterpret your questions or instructions: low understanding of metaphor  You could misinterpret their answers – people with autism can give literal answers which give false perception of what they mean.  You could think they are more capable than they are: this is the difference between intellectual and adaptive functioning  They could display anger and anxiety or could make complaints-  They could receive inadequate medical treatment as refused treatment

24. What are the main problems? 24

25. Making the most of a visit to the surgery – ways to help  make sure their diagnosis is coded as a significant active problem on the records  make sure their carers are on the carers register if appropriate  highlight any reasonable adjustments that are needed to allow the patients or their carers to access services  make sure these adjustments are clearly “flagged” on the records  if someone is registering at the practice and they are anxious about visits, arrange some time to visit without an appointment and when no interventions are needed  encourage them to use a patient passport and take it to appointments in case they see a member of staff who does not know them  if they do not understand something – encourage them to say so  if you refer them to hospital or to another secondary service for tests or treatment write on the referral letter the reasonable adjustments they will need.

26. Possible reasons for anxiety  Calling to book an appointment  Appointments consistently at unsuitable time  Getting to surgery  Lighting and noises in the waiting area  Delayed appointment  Different doctor/nurse  Referred numerous times 26

27. How staff can help reduce anxiety  Autism awareness training  Written and visual guides  Online booking/by email  Choose own appointment time (for known patients)  Quiet waiting space  Read code 1J9 27

28. Reasonable adjustments  be prepared to make early/late appointments or longer appointments  provide somewhere quiet to wait or allow someone to wait outside and then call them in  allow them to see the same clinician if at all possible (recognising that in an emergency this may not be possible)  nominate a key named contact person who will navigate the system, this may be a receptionist, administrator or nurse and not necessarily the GP  provide alternative ways of booking appointments, such as on-line, that do not involve the telephone

29. Top tips for consultation 29 Read code 1J9 Speak calmly & slowly Explain & ask Wait Few options Eye contact Write/ Type/ Print Family/ Friends Language

30. 30 Trainer contact details: