Neurodiversity-Affirming Practice in Mental Health - Lived Experience Feedback
I'm really passionate about upskilling other health professionals and creating change for more supportive mental health care for neurodivergent people, so I'm working on developing a training on neurodiversity-affirming practice in mental health.
As part of this I posed the following questions to neurodivergent people across a few Facebook groups to get a wider range of lived experience perspectives than just my own to include in the training:
What are the barriers to seeking and/or receiving mental health supports?
What helps you feel comfortable/able to share or connect with somebody? Think about therapist characteristics, methods, modalities, style as well as environmental factors.
Generally, what would you want therapists or other mental health professionals to know about supporting neurodivergent people with their mental health?
I received an amazing range of responses and as well as collating these to include in the upcoming training, I wanted to create a resource that mental health professionals could refer to, so I have collated the responses here and also created a downloadable resource.
What are the barriers to seeking and/or receiving mental health supports?
Therapist/service characteristics, knowledge, style, approach:
Having health care providers dismiss a diagnosis or not support a referral
Health providers who do not understand neurodivergence, especially late diagnoses, different presentations, functional impact and disability, fluctuating ability, masking, burnout Lack of understanding of the high rates of co-occurring mental health conditions and complex trauma with other types of neurodivergence
Not being aware of common physical co-occurring conditions and symptoms (e.g. digestive issues, fibromyalgia, dysautonomia, hEDS), their impact on mental health and the need for appropriate treatment of these, looking beyond somatisation or central sensitisation Not recognising or planning for a sensitivity to medications
Outdated ideas about certain types of neurodivergence and stereotypical presentations leading to misdiagnosis and underdiagnosis
Supports not understanding the difficulties of being neurodivergent and not willing to put in the extra work to try and understand
Dismissal, invalidation, infantilisation, ‘everyone experiences that’
Lack of flexibility in approach, not adapting approach or practices to support neurodivergent brains, unrealistic expectations with homework
Lack of understanding of different communication needs
Overuse of CBT as a modality, metaphors, indirect questions
Therapists claiming expertise in a certain area and then not delivering
Misinterpreting executive functioning difficulties as a lack of motivation, not trying hard enough or ‘non-compliance’
The double empathy problem, miscommunications, misinterpreting what someone is saying, making assumptions or not taking things seriously if the nonverbal cues don’t match what is being said
Not understanding environmental barriers, putting the blame and responsibility all on the individual
Not listening to lived experience voices
Personal Experiences
Previous negative experiences, medical trauma, shame, lack of trust
Not knowing when to seek help or where to go for support, not understanding what unhealthy levels of stress look like
Calling out abusive behaviour within services and then being labeled ‘a problem’, ‘disruptive’, or ‘disrespectful’ - impacting future care
Misdiagnosis (especially borderline personality disorder) leading to being labeled as ‘manipulative’ and this impacting subsequent treatment
Environment and Systems
No inbetween session contact available, lack of immediate crisis care Inappropriate and dangerous crisis responses
Racism, sexism, transphobia, misogyny, ableism, stigma
Cost, finances, funding systems and insurance Location, transport, parking Inflexibility about online options
Too much sensory input in waiting areas e.g. bright lights, background noise
Clunky patient portals, different services having different systems Lack of resources in mental health services, not enough practitioners, waitlist times, lack of appropriate training
Stigma around mental health in families and services
The harmful nature of some evidence-based practices
Communication
The number of steps it takes to get help, having to fill things in, send them back and talk to multiple people
Having to go through multiple people to find someone affirming (if this even happens)
Having to make phone calls, not having online scheduling options
Lack of useful information online
Not enough reminders for appointments
Lack of flexibility for different communication methods and styles
What helps you feel comfortable/able to share or connect with somebody?
Therapist/service characteristics, knowledge, style, approach:
Honesty, compassion, authenticity, genuineness, caring, respect, kindness, curiosity, non-judgemental
Positive body language, tone and expressions, consider your energy
Listen and validate, remind the person about their capabilities and worth, don’t dismiss experiences, someone’s distress is their distress even if it seems disproportional to you, everyone is different
Boundaries but with a friendly, conversational style, no infantilisation, cooperative model of care, direct communication, transparent approach
Time for getting to know each other, not having to mask in session, zero shame, understand rejection sensitivity dysphoria, no mind games or stern criticism, not making assumptions based on tone or body language, familiarity with internet culture and dark humour
Having an understanding of what’s going on is not all someone needs, see past the intellectualising and rationalising
Lived experience clinicians with similar neurodivergence or identity
Be ok with tangents, allow time for infodumping and venting, ask the person how they want you to respond if they are off task/topic, keep pace
Be open to feedback on your approach without defensiveness, be able to regulate yourself, do not insist on eye contact
Balancing not overpathologising with understanding the real difficulties, understanding the dynamics and complexity of neurodivergence
Balance of pushing while also respecting where the person is at
Being trauma-informed and neurodiversity-affirming, understanding of co-occurring complex trauma, personality disorders and misdiagnosis
Multidisciplinary team, communication between different supports
Awareness of intersectionality and gender diversity, consider and support intersectionality within services e.g. LGBTQIA+ mental health services familiar with Autism and the neurodiversity paradigm
Consider the overlap of neurodivergence and chronic illness and how this might be impacting someone’s mental health
Accommodations:
Freedom to fidget and stim, sit in preferred position, uncluttered space
Alternatives to words for sensations and emotions to help describe experiences (visuals, pictures, drawings, objects, cards, etc.)
Alternatives to visualisation practices
Flexibility with rescheduling and cancellations (with limits)
Alternative methods of communication e.g. writing notes
Executive functioning supports e.g. multiple reminders, do tasks in session
Session adaptations:
Working on small, manageable goals while also seeing the big picture, support to reflect on what hasn’t worked and looking to the future
Establish goals/topics at the start of a session, go with the flow but keep these in mind
Multimodal approaches and adaptations to modalities (e.g. EMDR)
Sessions in nature or doing activities
In person 1:1, option for online or phone sessions
Group sessions (for some people) to support social connection, grouped in different ages or stages, regular schedule but no pressure to attend
Environment:
Range of fidgets, space to move, different seating options available
Adjustable lights/temperature/sound, scent free
Quiet waiting room or able to wait in car
Communication:
Easy check in and booking systems, online scheduling or make appointments in session, alternatives to making phone calls
Clear forms, therapists read intake form to reduce repeating information
Reminders with clear directions and instructions
Accountability check in between appointments
Have a current photo available, explain your why in bio and a bit about you, your approach and style; personality match is important
What I want therapists to know...
Use neuro-affirming language
Please give advance notice of changes
Difficult experiences with therapists can make it less likely that a person will seek help again e.g. being infantilised
Neurodivergent people are playing life on hard mode, they may need more time to recharge and be more wiped out from everyday life
Awareness of factors that can impact mental health: income, race, housing, masking, inability to work full time, brains that work differently, difficulties with self-care and relationships, trauma
Social model of disability - a lot of disability comes from society and talk therapy is not going to fix this
Certain modalities (e.g. CBT) might not work for a person with ongoing difficulties related to being neurodivergent in the world, may need more practical strategies to work on regulation, executive functioning, relationships, managing ableism, advocating for accommodations, etc.
Understanding the signs of burnout, dynamic disability and fluctuating capacity, what meltdowns are and how you can provide support
There are different ways of experiencing, processing and understanding emotions and sensations, things may be processed cognitively but not felt – awareness of alexithymia and interoception
Focus in on what’s helpful for the person, seek to understand their experience, find what works for the person, do with not to, work as a team
Misdiagnosis is common, have an awareness of a range of traits, look beyond the surface and check for undiagnosed neurodivergence that could be at the root of someone’s depression and anxiety, be curious about a BPD/EUPD diagnosis (common misdiagnosis for Autistic women)
Learn from neurodivergent communities and lived experience voices, the research is way behind and doesn’t capture the full range of lived experiences, seek feedback from your clients, be responsive and flexible, respect their autonomy, be a bridge between the worlds
Respect eye contact preferences, there are many ways to pay attention
People with a late diagnosis need different supports than children, it’s often about unlearning certain patterns
A selection of resources
Dr Nick Walker, Neurodiversity: Some Basic Terms and Definitions
Lived Experience Educator, Neurodiversity Affirming Practice
EMPOWER model of neurodiversity affirming occupational therapy practice by Dr Bryden Carlson-Giving
Facebook Pages:
Neurowild
Embrace the Muchness
Reframing Autism
The Lived Experience Educator
Neurodivergent Insights
Dr Alice Nicholls
Kelly Mahler - interoception
Sensory Modulation Brisbane
How To ADHD
Ben B. - "My Own Words: Reflections of a Non-Speaking Autistic
Fidgets and Fries
Books:
Neuroqueer Heresies by Nick Walker
Unmasking Autism by Dr Devon Price
Different Not Less by Chloe Hayden
What I Mean When I Say I’m Autistic by Annie Kotowicz
I Am Autistic and This Is ADHD by Chanelle Moriah
How To ADHD by Jessica McCabe
All Tangled Up in Autism and Chronic Illness by Charli Clement
Thanks for reading, I hope it was useful and please continue to explore!
I will add more content of models of neurodiversity affirming practice and examples of what this might look like in another blog.
Note: this is not a formal research study, it is a collation of responses to a Facebook post and so cannot capture the full range of experiences with mental health services across different neurodivergences and intersectionalities. I was not collecting any demographic data so cannot be certain of the characteristics of those who responded. There are likely to be certain groups who are underrepresented. This is a beginning of exploring and I would love the opportunity to do more in depth research into this topic.
