Can de-pathologizing diagnostic criteria improve neurodiversity inclusion, acceptance, and equity?

Two years ago, at the age of 36, I was diagnosed with Autism and ADHD. What took so long?

This experience of late diagnosis is extremely common, particularly among women, people with both ADHD and Autism, and people with high-masking presentations of both. There are several factors in this under-diagnosis and delayed diagnosis, but one I felt compelled to speak about today is how the diagnostic criteria for neurodivergent conditions, particularly for Autism, makes it sound like there's something wrong with people who are Autistic.

I only found out about Neurodiversity Celebration Week partway through the week, and I've attended several excellent virtual events and added close to 100 people to my LinkedIn connections thus far. I'm even meeting one of them for networking over matcha this afternoon! But the same thing that held me back from recognising Autism in myself, the same thing that delayed my diagnosis for three and a half decades, has also held me back from really celebrating my neurodivergence, so I think it's time to address it.

What does the current diagnostic criteria for Autism look like?

The UK follows NICE guidance which is complex and not exclusive to the DSM-V, but also includes components of ICD-10 / ICD-11 classifications, non-deficit models, and comprehensive assessments. However the DSM-V is one of the most straightforward criteria that the public can access, and holds substantial weight in the professional opinions of GPs as well as the rest of the public. Take a look and see if you would have trouble celebrating this description of yourself:

DSM-V Autism Diagnostic Criteria:

To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Deficits in social-emotional reciprocity
2. Deficits in nonverbal communicative behaviors used for social interaction
3. Deficits in developing, maintaining, and understanding relationships

B. Restricted, repetitive patterns of behavior, interests, or activities

1. Stereotyped or repetitive motor movements, use of objects, or speech
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior
3. Highly restricted, fixated interests that are abnormal in intensity or focus
4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment

How could this be different if de-pathologized?

I found it difficult to see myself in the diagnostic criteria above, and accept and embrace my different ways of thinking, until I did some more digging into the latest peer-reviewed research and found substantial evidence for a non-deficit model. I used this to translate the criteria into de-pathologized language, and found it much easier to see myself as Autistic and provide examples for healthcare professionals to aid in my diagnosis:

A. Persistent differences from the general public and social norms in communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive):

1. Differences in social-emotional reciprocity, ranging, for example, from distinct social approach, not defaulting automatically to back-and-forth conversation; to difficulty initiating or responding to social interactions.

2. Differences in nonverbal communicative behaviors used for social interaction, ranging, for example, from unintegrated verbal and nonverbal communication; to discomfort with eye contact, difficulty interpreting body language and use of gestures; to a total lack of facial expressions or nonverbal communication.

3. Differences in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, comfort in taking the same route or eating same food every day).

3. Highly restricted, fixated interests that deviate from the general public in intensity or focus (e.g., strong attachment to or preoccupation with objects, perseverative interests).

4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of environments that others find benign (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

What's the evidence?

There is research evidence that autistic people do NOT necessarily show deficits in understanding or interpreting nonverbal communication, as compared to neurotypicals. Rather, Autistic people tend to assume non-verbal communication is less reliable than non-autistic people assume it is, and put more trust, or weight, on verbal communication (Source ). So the miscommunication actually goes both ways between Autistic and non-Autistic people. Research has also shown that communication and rapport is just as good between Autistic people as between non-Autistic people. https://www.frontiersin.org/articles/10.3389/fpsyg.2020.586171/full But of course because there are more neurotypical people in the world, the communication “deficit” is blamed on the Autistic person ??

Also of interest, Autistic researcher Damian Milton reframing empathy mis-matches between Autistic and non-Autistic individuals as a double empathy problem, as in the miscommunication is going both ways - Source?

I also absolutely love this perspective from Prof. Nancy Doyle who is the CEO of Genius Within -

What are Soft Skills Anyway? Unconscious Bias in Everyday HR

Why is it important?

Once I was able to see that there's actually nothing inherently wrong with the way I think and interact with people, it's just not the norm, I was able to really embrace my self-diagnosis and help my GP to see and understand why I should be referred for assessment. I've also been able to get support from Access to Work, a UK organization that provides funding for workplace assistance for people with disabilities. This could include software, tools, and equipment, but one of the most helpful for me has been workplace coaching and co-coaching with my managers through Genius Within. This has really helped me to understand my own neurodivergent needs and preferences that I had been masking for decades, to start communicating and advocating for these needs, and helping my colleagues at Hitachi Vantara to meet me part-way and provide personalized support and accommodations to help me thrive.

What are your thoughts?

I would love this to be a conversation, and I can see there's still some pathologized language in my own translation, but I haven't come up with the best possible wording. Please feel free to share your suggestions, your own stories, and your own ways of celebrating neurodiversity and inclusion.

#ThisIsND #NeurodiversityCelebrationWeek