Guess what! Autism isn’t always that different.

Who knew? Well autistic people knew and now we are catching up!

At Berkshire Psychology we are committed to offering a dynamic, collaborative and affirmative assessment experience. One that reflects a contemporary understanding of neurodivergence, and a shift away from outdated and harmful stereotypes. We aim to chip away at stigma with fresh understanding.

True or False? Autistic = ‘Something Wrong with’ ………False

Why would anyone consider that their passionate, gentle, talkative, curious, friendly, intelligent, caring, hilarious, generous, sociable, independent, arty, theatrical, driven, sensible, entertaining, polite, practical, well behaved, mature, studious and or insightful etc child could possibly be autistic? Well….

For too long, autism assessment and diagnosis has focused on medicalised language such as ‘disorder’, ‘deficits’ and ‘symptoms’, with behaviours described as ‘odd’, ‘abnormal’, ‘peculiar’ ‘excessive’ and ‘restricted’. Parents, teachers and clinicians are asked about behaviours that fit with a wholly negative picture with a clear ‘external presentation’. This ’deficit’ model of assessment has dominated for years and has meant that typically, it is those children with highly visible support needs, perhaps around language and communication, personal care, and/or unsafe behaviour, that are diagnosed at a young age.

What do we mean by Internal Presentation?

In the absence of obvious observable and stereotyped ‘deficit’ behaviour e.g. flapping, poor eye contact, not responding to their name, and solitary play, and in the presence of ‘strengths’ such as well-developed language, good behaviour and intelligence, those with an internal presentation (often but not exclusively girls) have had their autistic support needs missed. The male centric assessment data and research, combined with societal norms and expectations around girls’ behaviour, has meant that autism in girls was explained away differently ‘they’re just shy, fussy, highly strung, bossy, anxious, oversensitive, rude, controlling’’.

The Autistic Girls Network says that in the UK, those with an internal presentation (largely girls) are typically diagnosed six years later than those with an external presentation (largely boys) and are often in crisis. As cited in the White Paper published by the Autistic Girls Network, ‘’girls aren’t diagnosed later because there is a female phenotype of autism (there isn’t), they are missed for complex reasons the largest of which are masking and presenting internally’’.

Masking

Masking is a safety behaviour and is associated with an ‘internal presentation’. Even young children sense feeling different from others. They might experience confusion, rejection, overwhelm and try to fit in to feel more secure. Masking occurs consciously and unconsciously. It can help people ‘survive’ confusing social situations or help them make friends. Masking includes consciously making eye contact, pretending to like something, hiding distress at noises, practicing conversations and facial expressions, watching and copying others. Sustained masking means a person hides their authentic self. The cognitive and emotional effort required is enormous, with little reward, it is associated with exhaustion, burnout and low self-worth.

Widening Our Lens

We have listened to autistic people's lived experience, to shape what we do. Those with an internal presentation and fewer visible support needs are often not recognised as neurodivergent and have suffered. While we have referred to this being largely women and girls, it is not exclusively so. Boys and men can mask and present internally too, so the focus on these being female-only issues can also be problematic. In today’s world being autistic is challenging enough but being autistic without knowing is Universally Bad News (author’s opinion) regardless of gender. See Emily Katy: 'Finding out I was autistic saved my life' - BBC News.

Conversely, children who are aware they are autistic have been reported to have improved self-advocacy skills, and increased self-awareness of both their strengths and weaknesses (Kiely, et al. 2020).

The Autistic Girls Network says, “Autistic girls may be extremely sociable or chatty, or very shy and isolative. It is common for them to have one or two strong friendships, but struggle socialising in groups. A common theme reported by autistic women was to not really feel as if they fitted into the friendship group (Milner et al, 2019). Others felt that they had more difficulty keeping friendships than making them.‘’

Capturing and understanding a person’s social connections, perspectives, masking and sensory experiences forms a valuable part of assessment. A person’s social experience is more nuanced than ‘has friends or doesn’t have friends’. It is shaped by aspects of communication, needs and interests, and sensory experience. Autistic people can and do make amazing friends and enjoy mutually rewarding relationships with shared understanding and connectedness.

A note from Dr Jenny Murray, Clinical Director, Berkshire Psychology: Thanks to Anna Maguire for writing this article on our behalf.