- We Need to Reframe What We Problematize
- We Need Real Empathy and Understanding for Autistic People
- We Need Autistic-Informed Policy Education
- We Need Effective Communication
- We Need Relief from Sensory Overload
- We Need You To “Get It”
- We Need Access Intimacy
- We Need Alternatives to Telephones, Telephones, Telephones!
- Dear Problem Patients
- The Accommodations for Natural Human Variation Should Be Mutual
We Need to Reframe What We Problematize
We have a medical community that’s found a sickness for every single human difference. DSM keeps growing every single year with new ways to be defective, with new ways to be lessened.
The myth of normal is what’s broken, and the identity that, if you don’t fit it, that you are less than, that’s what’s broken. We need to reframe what we problematize, not bodies, not difference, but this pervasive imperative to be normal.
Disability industrial complex is all about what people can’t do. We spend most of our time trying to fix what they can’t do. When all we do is fix people the message we give to them is that they are broken.
We have created a system that has you submit yourself, or your child, to patient hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.
We Need Real Empathy and Understanding for Autistic People
And if they don’t have to, most of them won’t.NEUROTYPICAL PSYCHOTHERAPISTS & AUTISTIC CLIENTS • NEUROQUEER
We Need Autistic-Informed Policy Education
Both formal research, and autistic people’s own reports, clearly show that autistic health concerns-including mental health issues-are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.
It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.
I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people-even those technically capable of holding a conversation-can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as “difficult.”
I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son’s experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.
I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.
I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed byAASPIREandUCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.
I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments-yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son’s life and those of his autistic community members are valuable, and should be treated that way.
Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren’t male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in “community ambassadors” who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues
The level of ignorance, stigma, and open hostility that Autistic patients and Autistic healthcare professionals regularly have to deal with is traumatising. There is a need for healthcare sector wide education in the neurodiversity paradigm, the neurodiversity movement, and Autistic culture. Education on these topics is essential for addressing entrenched problems of lack of cultural and psychological safety in the workplace. There are also corresponding problems of lack of safety for patients, their whānau / families and communities.
Education about the neurodiversity paradigm is not the same as education about neurodiversity. It answers an important question:
How does the mindset and language of the new paradigm differ from the language in the old paradigm?
Education about the neurodiversity movement builds on the neurodiversity paradigm. It answers three important questions:
Why is there an urgent need for a paradigm shift?
Who is involved in the shift?
Who must learn from the neurodiversity movement?
Education about Autistic culture builds on the results of the neurodiversity movement. It answers three important questions:
What is Autistic culture?
How does it relate to other cultures?
How does it relate to the neurodiversity movement?
In particular, healthcare professionals must be introduced to the non-pathologising and non-stigmatising language that has become the expected default within Autistic culture and within the broader neurodiversity civil movement that emerged out of the Autistic rights movement. The required education is very different from education framed in the culturally outdated language of the pathology paradigm, which still presents and rates the humanity of neurodivergent people in terms of deficits relative to the current neuronormative culture.Education about Autistic culture, the ND paradigm, and the ND movement – for medical professionals, by Autistic people
We Need Effective Communication
All of these models we use in mental health services for understanding behaviour are in and of themselves potentially very helpful, but unless people are thinking neurodivergence first, they are possibly missing out on the key thing that might make a difference to that person’s understanding of themselves…This then has a multitude of consequences for all involved: the least of which is the spending of money on inappropriate services and treatments, whilst the genuine needs of the person go unspoken and unmet, sometimes for many years at a time.More Than Words: Supporting effective communication with autistic people in health care settings
Recommendation 1: Always consider that a patient may be autistic
Recommendation 2: Adapt the sensory environment to support autistic people to engage and communicate comfortably with services
Recommendation 3: When taking a history from autistic patients, consider whether impaired interoception (a reduced awareness of bodily sensations) may be affecting how (and what) symptoms are reported.
Recommendation 4: Wherever possible, create a reliable, predictable environment and support ‘single-focused’ attention
Recommendation 5: Be alert to situational mutism
Recommendation 6: Support non-speakers to use AAC and always assume capacity
Recommendation 7: Think about communication challenges as a two-way mismatch when interacting with autistic patients and make efforts to ‘meet them in the middle’.
Recommendation 8: Pay attention to what autistic people say about their pain and symptoms, and resist making clinical judgements based solely on behavioural signifiers
Recommendation 9: Consider a trauma-informed care approach when working with all autistic patients
Recommendation 10: Offer a variety of methods for making appointments and accessing servicesMore Than Words: Supporting effective communication with autistic people in health care settings
Theme 1: Is my patient autistic?
Theme 2: Sensory challenges that affect communication
Theme 3: Predictability and focus
Theme 4: Situational mutism, semi-speaking and non-speaking autistic patients
Theme 5: The double empathy problem
Theme 6: Taking a trauma-informed care approach
Theme 7: Supporting accessMore Than Words: Supporting effective communication with autistic people in health care settings
We Need Relief from Sensory Overload
“It’s Not Rocket Science” – NDTi – “Small changes that can easily be made to accommodate autism really do add up and can transform a young person’s experience of being in hospital. It really can make all the difference.”
Considering and meeting the sensory needs of autistic people in housing | Local Government Association – “One of the most important findings is that most autistic people have significant sensory differences, compared to most non-autistic people. Autistic brains take in vast amounts of information from the world…”
Avoiding Anxiety in Autistic Children by Luke Beardon | Waterstones – “I have written elsewhere about what I refer to as ‘the golden equation’ – which is: Autism + environment = outcome. What this means in an anxiety context is that it is the combination of the child and the environment that causes the outcome (anxiety), not ‘just’ being autistic in and of itself.”
Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk of PTSD Development Following DSM‐5 and Non‐DSM‐5 Traumatic Life Events – Rumball – 2020 – Autism Research – Wiley Online Library – “Research to date suggests that individuals with autistic spectrum disorder (ASD) may be at increased risk of developing post-traumatic stress disorder (PTSD) following exposure to traumatic life events. It has been posited that characteristics of ASD may affect perceptions of trauma, with a wider range of life events acting as possible catalysts for PTSD development.”
Autistic people face barriers accessing the healthcare system, followed by difficulties interacting with healthcare providers, which may contribute to known healthcare disparities, including increased morbidity and mortality. Our study has highlighted a variety of specific barriers to accessing primary healthcare for autistic adults, including use of the telephone to book appointments, not feeling understood, and difficulty communicating with doctors as well as sensory and organisational issues, which impede healthcare access. We identified a variety of significant associations between self-reported barriers to healthcare access and adverse outcomes for autistic respondents. One of our most impactful findings was the lack of any significant differences between formally diagnosed and self-identified autistic respondents in difficulty attending a GP, barriers experienced or self-reported adverse healthcare outcomes. Progress towards eliminating healthcare disparities for autistic people may be achieved by understanding the healthcare experiences and access barriers for this vulnerable patient group. These barriers represent not so much a failure to deliver or to avail of healthcare, but a lack of intersection between the communication patterns of autistic healthcare users and non-autistic providers. Reasonable accommodations are legally 35 and morally required. Adjustments for communication needs are as necessary for autistic people as ramps for wheelchair users.Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study | BMJ Open
We Need You To “Get It”
This is the story about a doctor and nurse I once had and how they “got it.”
“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.
We Need Access Intimacy
Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.Access Intimacy: The Missing Link | Leaving Evidence
We Need Alternatives to Telephones, Telephones, Telephones!
Phones are very stressful. ‘Call if you have a problem’ is an inaccessible gauntlet for us and many others. If you work with neurodivergent kids, keep in mind that their parents are likely neurodivergent too. Most of the autistic parents “you encounter will not be diagnosed, and may indeed be oblivious to their own social and communication difficulties. By making your systems and processes more adapted to the needs of autistic mothers, you will be supporting not only undiagnosed mothers (and fathers) but other adults with additional needs.“
Considering that autism professionals must know how we autistics struggle with verbal communications, it is troubling how few willingly offer alternatives. My life, and my ability to advocate for my son, has been immeasurably improved through the use of email.
If you do one thing to improve your service, please provide your email address and show willing to communicate in this format. I can think of no reason to withhold email addresses, and am not sure what’s stopping you.THINKING PERSON’S GUIDE TO AUTISM: Could Do Better: To Professionals Working with Autistic Mothers of Autistic Children
There’s a lot of misunderstanding about autistic people, and phone calls.
Many autistic people are not always able to speak, or may not be able to speak at all.
Unfortunately, not a lot of people know this. So there can be major difficulties with people misunderstanding what’s happening.
Lots of autistic people can only sometimes use phones. It’s a major barrier to healthcare, to job success, to getting basic services and basic human rights. It’s great when companies and organisations know the law, want to work with us, and create different ways to interact. Text. Email. Webchat. Timed called with a known person. Anything that works for us as individuals.Ann’s Autism Blog: Autistic people and phone calls
We heard how autistic people also found it difficult to access services when they had to use the telephone to make appointments or book a consultation.
“Phone calls can be very, very difficult. And phone consultations – I understand that they are a very good tool at the moment, and I don’t have to see a GP face-to-face for something I can describe over the phone, but they’re still not necessarily an easy thing to do. It’s a barrier, I think.”(CQC colleague)
The research also highlighted the stress from:
- building up to making a phone call
- the cognitive overload caused by the anticipation or planning and processing of the steps to go through to access care.
For an autistic person, this could lead to a drop in their executive functioning. Executive function is a person’s ability to perform certain tasks that they might otherwise be able to do. This then made them reluctant to ask for help.
“I just kind of can’t bring myself to do it [make a phone call] and I’m a walking, talking, ‘high functioning’ (nonsense term) autistic person. You just don’t [make the call], so you just leave whatever health issue it is. That’s what I find anyway. You know, unless your leg’s hanging off, I just don’t seek health care.”(CQC colleague)Key findings – Care Quality Commission
“One of the things you get when autistic people are [feeling] low is executive dysfunction, so also just making an appointment in the first place can be… you want to do it and it just doesn’t happen, you know, and so yeah those steps can be very, very difficult.”(CQC colleague)
Quantitative data indicated that email ranked highly when accessing services, seeking customer support and communicating about research. When communicating with family, friends, in employment and in education, both face-to-face and written modes (email or text message) were preferred. In the qualitative data, four main themes were identified: Not the Phone, Written Communication, Masking versus Autistic Communication and Avoiding Communication. There is a clear message that mode of communication can be either enabling or disabling for autistic people. A reliance on phone calls can create barriers to access, yet the option to adopt written forms of communication can improve accessibility. For known connections, the preference for face-to-face communication is dependent upon how close and accepting the relationship is.
When contacting unknown people or organisations, we found that generally email was preferred, and phone calls were very unpopular. However, for friends, family and people they felt comfortable with, they preferred both face-to-face and written forms of communication (e.g. email and text message).
Implications for practice, research or policy
The findings suggest that services should move away from a reliance on phone calls for communication. They should make sure that access to support is not dependent on the phone, and instead offer written options such as email and live messaging which are more accessible. Future research should investigate the impact of COVID-19 on autistic people’s communication preferences, as video calling has become much more commonly used and potentially combines benefits and challenges of other modes discussed in this article.‘Anything but the phone!’: Communication mode preferences in the autism community – Philippa L Howard, Felicity Sedgewick, 2021
The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait.
Autistic respondents reported avoiding the telephone (78%), voicemail (61%) and face-to-face verbal communication (30%). Forty one per cent reported that it is ‘easier for me to communicate in writing’ (table 2).
While most respondents (67% vs 65%) reported booking an appointment online would facilitate access, autistic patients selected a need to ‘email my doctor in advance with a description of the issue I need to discuss’ (62%), ‘wait in a quiet place or outside until my turn’ (56%) and ‘book an appointment by text’ (41%).
Difficulty using the telephone to book an appointment was significantly associated with all adverse outcomes apart from having to undergo more extensive treatment or surgery than if they had attended sooner.Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study | BMJ Open
Dear Problem Patients
- We believe you.
- You’re not alone.
- The wellness industry is gaslighting you.
- It’s not your fault.
- You are worthy of compassion.
- Medical bias is real.
- The way we see medicine practiced on television is a fantasy.
- We believe that you have a problem.
- We are angry and grieving too.
- Talking to other people who know what this feels like has changed everything for us.
- It’s okay to feel joy when your body is hurting.
- Feeling joy doesn’t undermine how much you are struggling.
- It’s okay if you haven’t found any joy in your struggle at all.
- Your story doesn’t need a neat and tidy ending.
- Somebody out there is yearning for a story just like yours that is honest about pain or maybe joy and that ends in an uncertain and messy place.
- Your story matters.
- We want to know your story.
- We want to help you find the stories you’ve been yearning for.
The Accommodations for Natural Human Variation Should Be Mutual
Real inclusive organizing should at a minimum include: Incorporating disability into your values or action statements; having disabled people on the organizing committee or board; making accessibility a priority from day one; and listening to feedback from disabled people.
We have turned classrooms into hell for neurodivergence. Students with conflicting sensory needs and accommodations are squished together with no access to cave, campfire, or watering hole zones. This sensory environment feeds the overwhelm -> meltdown -> burnout cycle. Feedback loops cascade.
They don’t take disability studies classes.
They don’t socialize with us.
They don’t listen to us.
Wanted: hospitals and doctors’ offices that…
“Written communication is the great social equalizer.” It allows us to participate and be a part of things bigger than ourselves.
Our multi-age learning community sets up and runs our organization. We don’t use learning management software. Instead, our learners use the professional tools of a modern, neurodiverse organization, without all the ed-tech surveillance baked in. We use technology to co-create paths to equity and access with our learners.