We're in the middle of a revolution of our understanding in what it means to be autistic.
Whilst previously we've recognised autistics who have experienced and shown great distress and supported them from an early age, we're now starting to recognise autistics who have experienced distress and hidden it. They've used their pattern recognition skills to work out what they need to do in order to 'fit in', sometimes at great expense.
These are the autistics who have often walked away from systems with other diagnoses -
and worse still, informal labels.
Lazy. Too much. That weird kid.
And worse still, the informal ones we've given ourselves.
Why can't I do it as easily?
Why am I always exhausted?
Why IS LIFE SO HARD for me?!?! I don't have it that bad.
These are the people who our system has failed when we don't put screenings for neurodevelopmental differences when they first present to mental health spaces, and allow them to proceed as if they are broken. Unfortunately, anti-autistic bias exist in therapy spaces due to how clinicians are traditionally trained, to cure or change autistic people, resulting in damages to self-esteem and the therapeutic alliance. (Zaradski & Bialka, 2022) This bias results in implicit, heuristic decisions of "if we connect, then you couldn't possibly be autistic".
Eberhard and his colleagues examined 172 first time attendees at an adult outpatient clinic who were aged 18-25. Here are some of the results:
53% of presenting patients met criteria for an ADHD diagnosis. Only 38% of them had already been diagnosed.
20% of the presenting patients met criteria for autism. Only 21% of those had already been recognised.
63% of presenting patients met criteria for both ADHD and autism.
Whilst Eberhard and his colleagues didn't find a significant difference amongst gender, Robert McCrossin (2022) found that traditionally, we've missed diagnosing females. Using a data set of 1,711 people under the age of 18, he found that 80% of females were undiagnosed at age 18, which had serious implications for the mental health of young women and explained the above statistics of why we were walking away with other diagnoses.
Revolutions in our understanding point to not the idea that there is female and male presentations of autism, but rather more internalised (hidden) and externalised (easily visible) presentations of autism. Due to the social pressures that society puts on females to cope in a certain way, females tend to present with more internalised presentations.
Thinking about coming to terms with an autism diagnosis, autistic adults often find interacting with other autistic adults to be more comfortable, validating and fulfilling than interacting with other non-autistic adults. They describe finding this community as "a group of fellow travellers who understand". (Crompton et al, 2022).
Better yet, we're just starting to realise that there are happy autistics out there, who are perfectly happy in their autistic neurology and autistic families, who are no less autistic, but may not connect with the distress paradigm as they've been well supported throughout their life.
So if you're ready to explore this aspect of your identity, here are a few ways that you may try this:
Informally following autistic creators on TikTok and your chosen forms of social media (See list here)
Go to an autistic meet up (check out meetup.com, or if you're in Melbourne, Australia, there's the Yellow Ladybugs Conference or meet ups hosted by Paul from Autism from the Inside)
Try taking some informal tests over at Embrace Autism
Follow While You Wonder and take your time seeing if you resonate with autism questions when phrased in a neuro-affirming fashion. Website/Instagram.
Go on the waitlist for a formal assessment. Some adult assessors who you are experienced with internalised presentations and have shorter waitlists are: Haylea Rose, Belinda Whitlock, Nicolle Griffin, Chelsea Luker, Jennifer Ashkar, Victoria Gottliebsen, Andrew James)
I hope this information helps you along your journey of exploring your identity. Let me know if this helps in the comments below, or other resources you feel may be helpful!
References:
Crompton, C.J., Hallett, S., McAuliffe, C., Stanfield, A.C. and Fletcher-Watson, S (2022) “A Group of Fellow Travellers Who Understand”: Interviews With Autistic People About Post-diagnostic Peer Support in Adulthood. Front. Psychol. 13:831628. doi: 10.3389/fpsyg.2022.831628
Daradzi & Bialka, C.S. (2023) "Oh, you couldn't be autistic": Examining anti-autistic bias and self esteem in the therapeutic alliance. Autism, 1-11.
Eberhard, D., Billstedt, E. & Gillberg, C.(2022) Neurodevelopmental disorderscand comorbidity in young adults attending a psychiatric outpatient clinic. Psychiatry Research, 313, 114638
McCrossin, R. (2022) Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis. Children, 9 (272).