How can unhappy autistic children be supported to become happy autistic adults?

1. How can unhappy autistic children be supportedto become happy autistic adults? Dr Luke Beardon The Autism Centre Sheffield Hallam University

2. Rules • Yes, you can record this but please don't make the recording public in any way • Yes, you can take pictures of slides • Yes, you can tweet throughout should you wish to do so • My Twitter is @sheffieldluke • If you catch me and want to talk I am interested in autism, triathlons, cooking, and the smell of my dog

3. Positionality • Senior Lecturer in Autism, SHU • 'Practice based academic' • Decades of working in the autism field • Range of research interests • History of being a hands on practitioner in many different settings • Course leader Post Graduate Certificate in Autism/Asperger Syndrome (with the NAS) • Not a clinician - rather than having clinical training my skill set comes from academic pursuits juxtaposed with hands on experience in autism-specific roles (I have worked in 'autism only' contexts for well over 20 years) • Knowledge base from research, consultancy, and experience - most of all, from autistic individuals and families

4. My nine guidelines for achieving the goal of happy autistic adults. Please note - I am referring to autism only, i.e. not autism with co-morbid intellectual disability

5. One - a paradigm shift in understanding autism • Challenge why autism is in DSM and ICD • Identification not diagnosis - and get it done sooner rather than later • De-medicalise autism • Create happy parents • Honesty - no crystal balls! Professionals, please note: you categorically cannot know what the future holds for the child

6. Two - stop comparing • PNT (predominant neurotype) are hugely impaired in autistic social skills • PNT are hugely impaired in autistic communication • PNT are hugely impaired in autistic empathy • PNT are hugely impaired in understanding autistic sensory experience • PNT are hugely impaired in seeing the wonderful details • PNT are hugely impaired in having passionate interests • PNT are renowned for having limited sensory experiences The PNT are extremely impaired autistics, just as autistics might be fairly poor at being non-autistics, despite trying really hard

7. People with Autism cannot... • look at you in the eye • have friends • be sociable • get married and have children • walk properly • get a job • empathise • behave politely and appropriately • communicate effectively • love others • be imaginative • have a sense of humour Please note that all of the above is utter rubbish

8. Value judgements to question • friends are a necessity • playtime means having to play • inclusion is a good thing • assessment are valid for all neurotypes • good expressive language means good comprehension • conforming to a PNT norm is healthy for a person who, by definition, is neurologically different • just because a person can do something, they should do it • teamwork is essential and works for all • interviews are a good way to ascertain abilities

9. What is Autism? My attempt at a definition: Autism refers to a neurotype that leads to a cognition that is qualitatively different from that of the predominant neurotype (PNT) in the way that information specific to communication, social interpretation and interaction is processed and understood; and to a perceptual reality of the sensory environment that differs considerably from one individual to the next Luke Beardon

10. A Better definition Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity Julia Leatherland

11. Three - communication • Prepare the child for being autistic and to understand what this means in a positive way (which means identifying at an early age) • Conceptual language is problematic so: • use games to develop understanding • identify how to label emotional states - alexithymia may be more common than you think • never assume that the autistic child comprehends without checking Shared communication is absolutely critical • face to face isn't always best • information is more important than chatting • diaries, Mr Men/Little Miss, emoticons

12. Conceptual Communication • within a logological paradigm subdermatoglyphic is my favourite isogram... WHAT IS YOURS???

13. Four - the golden equation Autism + the environment = outcome You cannot change someone being autistic but you CAN change the environment in which the child/adult is in. • Trying to squash an autistic peg into a PNT shaped environment a) won't ever work, b) really hurts, and c) wrecks both the autistic peg and the PNT shaped environment

14. Five - Friends/Social • friendship and/or social time may well be different compared to the PNT • an autistic sociality should be perfectly acceptable • reduce pressure to conform to PNT sociality • being on your own is not the same as feeling lonely • playing online is not the devilry that some people make it out to be • recognise the strain of social occasions and make allowances

15. Six - it's all about anxiety • the first goal in any interaction is 'have I done all I can to reduce anxiety?' • a ruling to always take into account: What are you doing... and why are you doing it?

16. So... • parents - your autistic child is autistic - so parenting will by definition have to differ in many ways compared to parenting a PNT • teachers - your autistic child is autistic - so teaching will by definition have to differ in many ways compared to teaching a PNT • partners - your autistic partner is autistic - so relationships will by definition have to differ in many ways compared to having a relationship with a PNT • employers - your autistic employee is autistic - so managing will by definition have to differ in many ways compared to managing a PNT

17. Seven - it's life, Jim, but not as you know it • looking at life through the autism lens • masking is very real - what you see is not what you get • when autistic people (or parents of autistic children) tell you something, try and listen; it's all about acceptance, not necessarily about understanding • however - always striving to understand is of great benefit • if I had my way every professional would have to take a good academic course before being exposed to the autistic population

18. Eight - teaching a sense of self • teach the autistic child about what it means to be autistic • design a bespoke set of parameters against which once can judge self and make decisions • it is not helpful to compare yourself to the PNT • but it is equally (or even more) unhelpful to compare yourself to other autistic individuals • avoid grading autism in terms of being 'severe' (which is horrible) or even 'mild' (which is even worse) • having one trusted person in life is better than 99 vaguely trustworthy people

19. Nine - global stability • effective communication • understanding self • understanding others • understanding the environment - rules and regulations • understanding what is expected of me • being able to comfortably process the sensory environment • having expectations met • knowing how to engage with my environment and having an escape clause wherever possible • being effective with contingency plans so the unexpected becomes the expected

20. Last but not least (and to take us to 21 slides) The privilege of being oneself is a gift many take for granted, but for someone with autism, being allowed to be oneself is the greatest and rarest gift of all - Alyssa Aleksanian, 2016

21. Contact Information l.beardon@shu.ac.uk @sheffieldluke 0114 225 4548