This issue gathers recent research on healthcare access for autisticAutistic ways of being are human neurological variants that can not be understood without the social model of disability.If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline.  If… More people. These studies confirm autistic common knowledge about our healthcare accessibility struggles and how to ameliorate them.

Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings

SPACE is a great mnemonic and heuristic for supporting autistic people in all kinds of settings. We love the inclusion of physical, temporal, and emotional space.

Autistic people experience significant health disparities and reduced life expectancy. Barriers to accessing healthcare are associated with adverse health outcomes. Autism training and healthcare professionals’ knowledge about autism is variable, and heterogeneity among autistic people leads to additional educational and clinical complexities. Autism remains nebulous for many practitioners, who are unclear about communication differencesOur friends and allies at Randimals have a saying, What makes us different, makes all the difference in the world.Randimals We agree. Randimals are made up of two different animals… More, access needs or life experiences common to autistic people. Healthcare environments can be challenging for all patients but autistic people may require specific accommodationsAccommodation is fundamentally about not changing the person but changing the environment around the person.Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences Yet on a programmatic… More to allow equitable access. The authors have developed a simple framework which may facilitate equitable clinical services at all points of access and care, using the acronym ‘SPACE’. This encompasses five core autistic needs: Sensory needs, Predictability, AcceptanceAcceptance means training mental health service providers to look at autism and other disabilities as a part of a person’s identity, rather than a problem that needs to be fixed. Acceptance… More, Communication and EmpathyEmpathy is not an autistic problem, it’s a human problem, it’s a deficit in imagination.We all need to work on imagining things we have not been through.Empathy, Imagination and Autism… More. Three additional domains are represented by physical space, processing space and emotional space. This simple yet memorable framework encompasses commonalities shared by autistic people.

Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings | British Journal of Hospital Medicine

The authors’ aim was to create a simple framework promoting accessibility without adding to current clinical burdens. This is called ‘Autistic SPACE’, shown in Figure 1:

• Sensory needs.
• Predictability.
• Acceptance.
• Communication.
• Empathy.

Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings | British Journal of Hospital Medicine

The term Autistic SPACE, first used in 1992 (Sinclair, 2005), colloquially refers to places and events where autistic needs are prioritised, such as the annual autistic-led conference ‘Autscape’ (http://www.autscape.org). The authors have adapted the term to provide a memorable acronym which encompasses the breadth of autistic experience and healthcare access needs, offering a potential solution to address knowledge gaps.

Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings | British Journal of Hospital Medicine

Autistic sensory differences

Table 1 outlines sensory considerations.

Sensation	Considerations
Sight	Visual sensitivities are common. Bright lighting (particularly fluorescent) is a common challenge. Visual stimuli which may go unnoticed by non-autistic people, such as the flickering of fluorescent lighting or computer screens, an overhead rotary fan, or highly patterned surfaces, may all cause sensory stress
Sound	Autistic people experience auditory sensitivities and auditory processing differences. Environmental noise can cause intense distress, particularly when sudden or unexpected. Sounds unnoticed by non-autistic people, such as the humming of electrical equipment, may be perceived by autistic people without ‘fade’ (where inconsequential sounds are no longer noticed over time). Autistic people may not filter out environmental sounds and therefore may struggle to hear a conversation in a noisy room
Smell	Autistic people are often highly sensitive to smell and may perceive olfactory stimuli that others do not. Common and usually inoffensive smells may be perceived as highly noxious. In contrast, some autistic people are hyposensitive to smell and may enjoy smelling pungent objects
Taste	Autistic people may be hypo- or hyper-sensitive to taste, needing either highly flavoured or very bland food. Food texture is important, as is predictability (see below). Autistic people commonly enjoy colloquially termed ‘same foods’, which may explain a limited diet and negative reactions to a change of brand or recipe for a known brand of food
Touch	Tactile sensitivities range from inability to tolerate the sensation of certain fabrics to an inability to be touched, particularly by strangers. This leads to predictable challenges in a medical consultation where physical examination is required. Knowing the tactile sensitivity profile of a patient is helpful because difficulties commonly arise with light touch, whereas a strong deep touch may be more acceptable
Temperature	Thermal sensitivity is common and may lead to apparently inappropriate or out of season clothing. The range of tolerated temperatures is likely to be person-specific
Proprioception	Proprioception appears different for autistic people. Some may need lots of proprioceptive input leading to a tendency to climb, swing, rock or jump. Others will avoid such movements and may experience balance difficulties during day-to-day activities
InteroceptionInteroception our 8th sense, connects us to inner bodily awareness (e.g. pain, thirst, hunger, desire, hygiene & toilet needs, temperature, heart rate, breathing, even our bones, etc.) rather than sensations… More and pain	A particular challenge for some autistic people is accurately interpreting internal bodily sensations. This can lead to difficulties noticing hunger, thirst, tiredness, or a need to urinate or defaecate. Difficulties with pain perception can lead to unrecognised injuries but it must be emphasised that while reduced pain sensitivity occurs for some, others experience increased pain sensitivity, and this should never result in under-treatment of pain for autistic patients

Recommendations for supporting Autistic SPACE in practice

Table 2 summarises the authors’ recommendations for supporting Autistic SPACE in practice and improving healthcare for autistic people.

SPACE framework aspect		Recommendations for implementation
Sensory	Sight	Turn off or turn down artificial lights
		Remove flickering or oscillating environmental features
		Avoid highly stimulating decor
		Promote the use of sunglasses
	Sound	Consider environmental sounds
		Reduce auditory clutter
		Avoid conversation in noisy environment
		Promote the use of noise-cancelling headphones and/or ear plugs
	Smell	Avoid wearing perfume or highly scented cosmetics or toiletries
		Avoid aerosols or chemical ‘air fresheners’
		Avoid highly scented cleaning products
		Consider ventilation, open windows where possible
	Taste	Respect sensory preferences when considering nutrition
		Consider taste and texture of medications
		Consider non-standard medication formulations where necessary
	Touch	Ascertain tactile preferences and modify examination technique
		Avoid casual touch
		Promote sensory-friendly clothing choices
		Sensory aids such as weighted blankets may be helpful
	Temperature	Consider environmental temperature
		Adjust temperature where required
	Proprioception	Understand the need for proprioceptive input
		Avoid making inferences from unusual body posture
	Interoception and pain	Ask directly about internal sensations but understand that answering may be difficult
		Pay attention to verbal reports of pain where possible
		Be aware that non-verbal expression of pain may be different
		Consider the need for adapted pain scales
Predictability		Give realistic information in advance
		Ensure clear and accurate directional signage in physical spaces
		Provide photographs or videos of the physical environment and staff
		Allow waiting in a familiar environment (eg a patient’s own car or outside)
		Ensure care is provided by staff familiar to the patient where possible
Acceptance		Neurodiversity-affirmative approach beneficial
		Understand autistic stimmingSelf-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or words, or the repetitive movement of objects Stimming – Wikipedia Autistic adults highlighted the importance of stimming as… More and monotropicMonotropism is a theory of autism developed by autistic people, initially by Dinah Murray and Wenn Lawson.Monotropic minds tend to have their attention pulled more strongly towards a smaller number of interests at… More thinking patterns
		Facilitate need for detailed factual information
		Understand distress behaviour
Communication		Understand autistic verbal and non-verbal communication differences
		Know that communication ability is reduced by anxiety and sensory stress
		Clear unambiguous communication required
		Avoid phone-based appointment systems
		Promote use of augmentative and alternative communication (AACAAC Systems are methods of communication used to supplement or replace spoken or written language. A speech generating device (an AAC system with voice output), will have vocabulary organized to help… More)
Empathy		Recognise that autistic people feel empathy but may display it differently
		Empathy towards autistic patients may be more challenging for non-autistic healthcare providers
Physical space		Expect a need for increased personal space
		Avoid proximity to other people where possible
Temporal space		Allow increased time to respond to questions
		Allow increased time for decision making
Emotional space		Expect differences in emotional expression
		Allow restorative solitude to recover (without additional input) if distressed

The acronym ‘SPACE’ offers a simple framework for autism-specific accommodations: Sensory needs, Predictability, Acceptance, Communication and Empathy plus physical, processing and emotional space.

Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings | British Journal of Hospital Medicine

How you see me matters: perspectives of autistic people using primary care services

These findings and recommendations from the CQC very much align with our experience of primary care services.

CQC is committed to encouraging health and care services to provide the same good quality of care for everybody. To do this, it’s vital to listen to what people say about services and learn from their experiences.

Here, we present some perspectives from autistic people on challenges when using primary care services. We want these to help primary care providers think about how to accommodate the needs of autistic people when using services.

How you see me matters: perspectives of autistic people using primary care services – Care Quality Commission

From our review of published, peer reviewed articles and our conversations with colleagues, we were able to identify 3 groups of factors that contribute to the quality of primary care for autistic people:

• person factors
• provider factors
• system factors.

Key findings – Care Quality Commission

Person factors

Fear and anxiety

It’s important to distinguish between general anxiety as a mental health condition and situational anxiety. Situational anxiety is what autistic people can experience when the surroundings or situation cause cognitive overload or shutdown – or both.

It’s also important not to confuse situational anxiety with health anxiety. Autistic people can appear very anxious talking about their health, but this could be caused by sensory overload and environmental triggers.

When we refer to anxiety in this work, we are referring to situational anxiety. Situational anxiety is very common among autistic people. Every autistic person we spoke with reported that anxiety and a perceived lack of time to explain their concerns contributed to poor outcomes with their health. This was also reflected across research carried out in various countries – suggesting this is a universal issue. The National strategy for autistic children, young people and adults makes the point that autistic people often experience poor health outcomes because of a delay in seeking treatment. Autistic people in our focus groups told us they often felt reluctant to seek help and that they only access primary care as a last resort.

Key findings – Care Quality Commission

Sensory differences

Autistic people also experience sensory differences. These include:

• interoception – awareness of the internal sense of your body
• nociception – perception or sensation of pain.

Autistic people can therefore respond differently to pain. This means they may not be able to describe bodily sensations or be believed when they do. Clinical investigations need to take this into account.

Autistic people may not be able to provide an accurate assessment of the intensity of pain as a number using a traditional 1 to 10 pain score. They may see pain as a colour, or a picture. Being asked if the pain is a score of 10 – the worst they have experienced – may cause a significant delay in response. The pain may not be like anything they have experienced before. Responding literally could mean the pain is either over or under scored on the traditional scale. An autistic person may not even be able to pinpoint pain due to sensory overload from internal or external stimuli.

People in our focus groups described how:

• clinicians have not believed them when describing pain
• their facial expressions have been misinterpreted.

This can lead to developing a mistrust of clinicians and an unwillingness to access services. In turn this results in late diagnosisSelf diagnosis is not just “valid” — it is liberatory. When we define our community ourselves and wrest our right to self-definition back from the systems that painted us as… More, traumaIn expanding our definitions of trauma, we must make sure we see trauma as a structural issue, not just an individual one. Scholars now recognize what people from marginalized communities… More and anxiety for them.

Key findings – Care Quality Commission

Stress-related factors

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 callsThe sound of the phone ringing can immediately evoke anxiety for some people, especially for autistic people and people with anxiety. If the call hasn’t been agreed in advance, many… More 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 functionExecutive functionThe psychological ability to get things done.Autistic Glossary – AMASE Executive Function (n) is a set of cognitive processes that help us self-regulate so we can effectively plan, prioritize,… More 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.

Key findings – Care Quality Commission

Provider factors

People in our focus groups described how providers of primary care services sometimes do not do enough to take the ‘person factors’ into account to make their services accessible. This can then create a barrier to getting access to care in the first place and reduce the likelihood of a good experience of care.

Key findings – Care Quality Commission

Understanding and awareness of autism

The level of knowledge and awareness of autism among clinicians and others who work in health care affects how autistic people experience care and treatment.

Appointments and communication can go well when autistic people are able to:

• see the same GP or dentist
• have an appointment with a clinician with experience or understanding of autism.

However, staff with a poor understanding of autism may have stereotypical views and not understand how autistic people experience the world. They may also misinterpret a person’s style of communication as being rude, aggressive or blunt.

The autistic people we spoke with in our focus groups who don’t have a learning disability described how providers do not always believe they are autistic. They told us that not having a learning disability often meant they were not believed when they told services that they needed support. This was despite expressing needs that were often the same as autistic people with a learning disability.

Key findings – Care Quality Commission

Communication

Autistic people are more likely to communicate differently to non-autistic people – both verbally and non-verbally. Some autistic people are semi-speaking or non-speakingI am nonspeaking. I am not nonverbal. In fact, I am highly verbal. I don’t use my body’s voice—my vocal chords—as my primary way of communicating. I think I will… More. Others may lose their ability to speak (situational mutism I am situationally mute. For anyone that isn’t aware of what that is, it simply means that in certain situations, places or around certain people I don’t want to and… More) because of increased anxiety and sensory overwhelm.

They may find it hard to communicate concerns about their health. This can be due to:

• situational anxiety
• finding it difficult to describe what they experience because of sensory differences.

AlexithymiaAlexithymia (also called emotional blindness) is a condition where you have challenges identifying and describing emotions in the self. Essentially, alexithymia is a difference in emotion processing.The alexithymia & autism guide… More is an inability to recognise or communicate emotionsJustice, equality, fairness, mercy, longsuffering, Work, Passion, knowledge, and above all else, Truth. Those are my primary emotions.Very Grand Emotions: How Autistics and Neurotypicals Experience Emotions Differently » NeuroClastic https://youtu.be/uPRa6G2a48E… More. Because of this, some autistic people may not realise they have an issue that needs attention or be able to accurately communicate this. Annual health checks are therefore vitally important.

Many autistic people find it very uncomfortable to make eye contact and will try to avoid it. This may mean their efforts to communicate with healthcare professionals are misunderstood or appear less genuine.

Key findings – Care Quality Commission

The physical environment

Buildings and the physical environment of primary care services can provide challenges to autistic people – they can be disempowered by the environment that surrounds them. For example, waiting areas are often busy and can have:

• noises such as background music
• many other people present (patients, families and staff)
• a lot of visual stimulation such as posters and television screens
• an overwhelming range of smells
• intense lighting.

Autistic people we spoke with described how the discomfort they feel in waiting areas can lead to a lower executive function during the appointment. Some patients find the waiting room unbearable and will need reasonable adjustments such as waiting in a quiet room or in their car until their appointment.

Key findings – Care Quality Commission

Time factors

People in our focus groups told us about difficulties with the length of appointments. For example, during a short GP or dentist appointment it is difficult for them to:

• fully discuss all the concerns that led to the appointment
• make shared decisions about ongoing care and treatment.

Key findings – Care Quality Commission

System factors

The way healthcare systems are organised can provide challenges to autistic people. The process of changing from one service to another can pose challenges. This includes physically moving around an environment through to changing to a different type of healthcare provider.

We found from both the literature review and our own focus groups that people described themselves as “being pushed around the system” from one service to another without a clear explanation of the reasons why. When we looked at the academic research about these issues, we found reports that described the concern and anxiety expressed by autistic people. This was felt particularly by parents and carers whose child was transitioning from children’s services to adult services. In this case, good preparation is key to ensuring a seamless transition. Unfortunately, services do not always match the expectations and needs of autistic people or their families.

Key findings – Care Quality Commission

Identifying Components of Autism Friendly Health Care: An Exploratory Study Using a Modified Delphi Method

This study didn’t consult many autistic people but arrived at some agreeable conclusions nonetheless. We would appreciate the implementation of everything in table 3.

Autistic individuals report lower health care satisfaction. However, there is currently no set of “best practice” standards about caringThe activities that constitute care are crucial for human life. We defined care in this way: Care is “a species activity that includes everything that we do to maintain, continue,… More for autistic individuals.

Autistic individuals reported higher rates of health care services utilization compared with nonautistic individuals and those with other developmental disorders. Despite higher rates of overall usage, autistic individuals were less likely to access key elements of preventive care, such as cancer screenings and flu vaccinations. Autistic individuals and their families were more likely to report lower satisfaction with the care that they received. These findings are concerning because they suggest that the current health care environment is not optimal in meeting the unique needs of autistic individuals.

There are multiple aspects of a health care visit that may be incompatible with the unique needs that come with an ASD diagnosis, particularly as they relate to the 2 core features of ASD. In past studies, autistic individuals and their families reported multiple barriers in health care settings including challenges in communication, unmet sensory and behavioral needs, and lack of clinician familiarity and flexibility in caring for autistic patients. Similarly, health care professionals also reported barriers in caring for autistic patients, which included insufficient training/resources to meet the needs of autistic patients and environmental factors that were not conducive when caring for autistic patients (e.g., loud noises, bright lights, unfamiliar scents).

Identifying Components of Autism Friendly Health Care: An Ex… : Journal of Developmental & Behavioral Pediatrics

Table 3. – Ten Highest Ranked Statements Representing Components of “Autism Friendly” Health Care Practice According to Modified Delphi Study Participants

Flexibility of practice to accommodate patient needs whenever possible (e.g., perform routine examination on chair instead of bed)	1
Patients with autism are addressed directly and included in health care decisions, whenever possible	2
Staff are notified of a patient’s ASD diagnosis, communication style, triggers, safety concerns, and de-escalation strategies prior to encounter	3
Whenever possible, allow for modifications to the physical space according to patient preferences (e.g., dimmer lights, quieter exam room, and quieter waiting area)	4
Navigation support and staff to connect specialty medical, educational, and communityWhat I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/… More services or supports (e.g., navigating government resources, accessing behavioral therapies/interventions, in-home support, school advocacy)	5
Staff trained on understanding challenging behavior and de-escalation approaches that prioritize noninvasive techniques wherever possible (e.g., avoiding physical restraints or sedatives)	6
Assigning longer appointment slots for patients with autism who need them	7
Engaging multidisciplinary stakeholders (e.g., researchers, practitioners, families, individuals with ASD) to guide and oversee efforts to improve the hospitalexperience for patients with autism and their families	8
Prepared staff who accommodate individual communication styles (e.g., use of direct, concrete language; communication tools such as pictures, devices; demonstrating/modeling on others)	9
Preferential scheduling of appointment times when available (e.g., quieter times to prevent long wait times)	10

To better meet the needs of autistic people, we need to rethink how we measure services

This study addresses a fundamental problem with how we measure autism services.

Autistic self-advocates report that research is needed to examine which types of services truly benefit autistic individuals (Autistic Self-Advocacy Network, 2022). Families report that information about ways to access formal services is needed to improve outcomes for their autistic family member (Aleman-Tovar et al., 2022). Researchers, practitioners, and policymakers similarly report that, to better serve autistic individuals, rigorous research that examines which services are most effective for improving quality of life and other valued outcomes is needed (e.g. Interagency Autism Coordinating Committee, 2020; Lord et al., 2022).

Given the general agreement on the importance of services for supporting autistic individuals, one might think that there would be rigorous methods to measure appropriate and beneficial services across the lifespan. Unfortunately, this is not the case. A common way to measure services is by examining service receipt—specifically through dichotomizing whether or not a service is received and counting the number of services (e.g. Burke et al., 2016; Ishler et al., 2022; Kaya et al., 2018). This approach to measuring services assumes that more services are better, but such a premise may not be true. A count of services also implies that each service is equally impactful, an assumption that may be false and could point toward inefficient use of resources. Furthermore, the dichotomization method ignores several of the nuances that are important to understanding whether and when services are beneficial, including the intensity of services (e.g. How many weeks or days is the service received?), duration of the service (e.g. How many hours is the service received?), and content of the service (e.g. Does the service reflect evidence-basedEvidence-based practice is the process of identifying the best available evidence to make decisions about practices that should be deployed to support individuals in a given population (McKibbon, 1998, see Vivanti,… More practices? What are the specific practices that are embedded in the service?). In further detail in another manuscript (Burke et al., under review), we outline additional ways in which extant service measures are insufficient.

Measuring services in a way that moves beyond a count of services received and considers the aforementioned nuances has the potential to make research more impactful in informing practice and policy. Studies of mental health services may provide a good model for how to think about measuring nuance. It is relatively common in mental health services research to measure the type of service (e.g. inpatient, outpatient), setting of the service (e.g. psychiatric hospital, clinic, school), number of times the service was used, and benefits of the service (for an example, see the Services Assessment for Children and Adolescents, Horwitz et al., 2001). It is much less common to see comprehensive measurement of developmental disability or autism services—especially as an autistic person moves from adolescence into adulthood. For example, a study may assess whether vocational rehabilitation services are/are not received and whether the receipt of that service is related to a greater likelihood of employment, but for research to inform practice and policy, it is likely helpful to measure the number of hours of vocational rehabilitation services, the length of time the services are received, who is performing the services, and what specific practices are being implemented. Such a detailed and comprehensive assessment can provide the information needed to understand the circumstances wherein services are effective in meeting an individual’s needs.

First, it is critical to partner with autistic individuals, their families, and practitioners to inform the development of a service measure. By including the input of the end users (i.e. autistic individuals) at the beginning of developing a measure, we can ensure that the measure accurately reflects access to services and captures aspects of services that matter to autistic individuals (Pukki et al., 2022). The input of autistic individuals should also be central when defining service needs and what it means for a service to be beneficial. Relatedly, families of autistic individuals should inform the development of a service measure. Services, regardless of the context, are often difficult to navigate. Autistic individuals may rely on people in their lives, often parents, to help identify, apply for, and access services (Sanderson et al., 2017)—including into adulthood. 

To better meet the needs of autistic people, we need to rethink how we measure services – Meghan M Burke, Julie Lounds Taylor, 2023

Views about primary care health checks for autistic adults: UK survey findings

This survey uncovered common accessibility problems and ways to address them.

Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes.

Most responders (73.4%, n = 336) thought a health check is needed for all autistic people.Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician’s autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible.

Views about primary care health checks for autistic adults: UK survey findings

What would make a health check easier to access?

Supplementary Table S1 lists• Progress in human understanding has become increasingly complex and overwhelming.• Checklists help prevent serious but easily avoidable mistakes.• Checklists should be as short as possible, include all essential steps… More the response categories and illustrative anonymised quotations for each of the categories. The most frequent responses about what would make a health check easier were: factors relating to health professionals, such as a familiar clinician, and/or someone who knows about autism (19.5%, n = 171); environmental factors such as low-level sensory stimulation, especially in the waiting room (18.9%, n = 166); and providing information about the health check, such as who the participant will be seen by, photographs of the venue and staff, and information about what will happen (14.6%, n = 128) (see Figure 1). Responders also identified specific requirements of the health check (5.0%, n = 44), including offering adjustments, doing health checks online, health professionals reviewing notes beforehand, and having a written summary detailing the outcomes ofthe appointment.

Views about primary care health checks for autistic adults: UK survey findings

What would make a health check more challenging to access?

The responses were consistent with those reported above, with health professionals (26.5%, n = 215)and environmental factors (18.1%, n = 147) listed as the biggest potential challenges to a health check (see Figure 1). Responses indicated that health professionals could make health checks more challenging for reasons by being ‘patronising’ or ‘not knowledgeable about autism’. Other factors included inaccessible appointments (for example, inflexibility with appointment times and locations;13.1%, n = 106) and factors related to the organisation of the appointment, such as a lack of support or unclear communication. Only 6.8% (n = 55) reported concerns about the health check appointment itself (for example, being put on the spot to answer questions, being pressured to attend, long forms to complete on the day and undertaking physical assessments without seeking consent, such as measuring blood pressure).

Views about primary care health checks for autistic adults: UK survey findings

Pediatric agitation in the emergency department: A survey of pediatric emergency care coordinators

Emergency rooms are a sensory and social hell staffed by people who don’t know how to help us calm down.

Pediatric emergency care coordinators report many emergency departments do not have pediatric-specific resources to manage children with acute agitation. Additionally, barriers exist to use of behavioral de-escalation techniques, which, if addressed, may enhance care.

Pediatric agitation in the emergency department: A survey of pediatric emergency care coordinators – ScienceDirect

Acute agitation episodes in the emergency department (ED) can be distressing for patients, families, and staff and may lead to injuries. We aim to understand availability of ED resources to care for children with acute agitation, perceived staff confidence with agitation management, barriers to use of de-escalation techniques, and desired resources to enhance care.

PECCs from 63 of 102 (61.8%) EDs responded. PECCs reported that ED staff feel least confident managing agitation due to developmental delay (DD) or autism (ASD) (52.4%). Few EDs had a separate space to care for children with mental health conditions (22.5%), a standardized agitation scale (9.6%), an agitation management guideline (12.9%), or agitation management training (24.2%). Modification of the environment was not perceived possible for 42% of EDs. Participants reported a barrier to use of the de-escalation techniques distraction and verbal-de-escalation was perceived lack of effectiveness (22.6% and 22.6%, respectively). Desired resources to manage agitation included- guideline for medications (82.5%) and sample care pathway (57.1%).

ED PECCs report low confidence with managing agitation due to DD or ASD and limited pediatric resources to address acute agitation. Additional pediatric-specific resources and training, especially for children with DD or ASD, are needed to increase clinician confidence in agitation management and to promote high quality, patient-centered care. Training programs can focus on early identification of agitation and effective use of non-invasive de-escalation strategies.

In a survey of ED PECCs, we identify that few EDs have pediatric-specific policies, protocols, or training on the approach to acute agitation in children. Additionally, PECCs perceived that ED staff had low confidence in managing agitation due to DD or ASD, and that non-invasive de-escalation strategies were ineffective, offering insight into areas to focus additional resources and training. Quality initiatives should concentrate on increased use of standardized agitation tools, while also targeting education and training on effective use of de-escalation techniques, particularly for children with DD and ASD. These steps will enhance care for this vulnerable pediatric population and minimize adverse events related to agitation and restraint.

Pediatric agitation in the emergency department: A survey of pediatric emergency care coordinators – ScienceDirect

Patterns of Mental Health Service Use During the Transition to Adulthood Among Autistic Adolescents and Young Adults

Threshold transitions are hard. We need help.

The time of transition into adulthood, especially when leaving school, is a time when many autistic adolescents and young adults (AYA) may stop receiving mental health services that they have relied on, leading to worse mental health outcomes. The purposeSelf-determination Theory (SDT) is… — a model, a macro theory, of human motivation. It’s one of several models of human motivation, but it’s one that has been confirmed over and… More of this study was to describe patterns of mental health service use during transition to adulthood among autistic AYAs.

Almost half of the 529 patients in the cohort received polypharmacy. The most common treatment was medication only (56.9%), followed by no treatment (22.7%), medication plus psychotherapy (18.7%), and psychotherapy only (data maskedMasking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve… More). The 17–21 age group had the highest odds of a psychiatric ED visit, whereas the 22–27 age group had the highest odds of receiving psychotropic medications and polypharmacy. Black AYA were more likely to receive psychotherapy and less likely to receive psychotropic polypharmacy than non-Hispanic Whites.

Autistic individuals may benefit from more support from the health care system for their transition into adulthood to maintain use of beneficial mental health services as they leave school and to reduce the frequency of adverse outcomes. Access to providers experienced treating the complex needs of autistic individuals is important to reduce disparities.

These findings show that providers are relying heavily on medication, often including polypharmacy, to treat mental health issues in autistic adolescents and young adults.

Autistic individuals may benefit from more support from the health care system for their transition into adulthood to maintain use of beneficial services as they leave school, and to reduce the frequency of adverse outcomes. As ED visits were particularly associated with age, ensuring nationwide availability of community providers who are well trained in serving autistic AYA could help prevent some of the crises that autistic AYA experience.

With nearly half of our cohort receiving psychotropic polypharmacy, access to providers experienced treating the complex needs of autistic individuals is important to maximize the quality of health care and reduce disparities.

Patterns of Mental Health Service Use During the Transition to Adulthood Among Autistic Adolescents and Young Adults | Autism in Adulthood

Assessing suicidal thoughts and behaviors and nonsuicidal self-injury in autistic and non-autistic early adolescents using the Columbia Suicide Severity Rating Scale

We need tools tested for us.

Autistic adolescents are more likely to experience suicidal thoughts and behaviors and nonsuicidal self-injury than non-autistic adolescents, per caregiver- and self-report on single-item questionnaires. Comprehensive, clinician-rated measures of suicide risk have not been used to measure suicidal thoughts and behaviors and nonsuicidal self-injury in autistic youth despite greater parent–child rating discrepancies among autistic youth than their non-autistic peers. The Columbia Suicide Severity Rating Scale is a widely used, clinician-rated measure of suicide risk that has not been tested with autistic youth. In this study, the Columbia Suicide Severity Rating Scale was employed to assess suicidal thoughts and behaviors and nonsuicidal self-injury in a community sample of 239 early adolescents (10:0–13:9 years old), of whom 138 youth were autistic and 101 were not autistic. Multiple analyses examined diagnostic (autistic vs non-autistic) and sex-based (male vs female) differences in suicidal thoughts and behaviors and nonsuicidal self-injury, as well as youth consistency in reporting across self- and clinician-rated measures. Findings show that a greater proportion of autistic youth reported lifetime suicidal thoughts and nonsuicidal self-injury than non-autistic youth; however, there were no sex-based differences. The majority of non-autistic youth were consistent in reporting suicidal thoughts on self- and clinician-rated measures; however, nearly one in five autistic youth disclosed suicidal thoughts on a self-report measure but not to a psychiatrist on the Columbia Suicide Severity Rating Scale. Findings suggest that autism diagnostic status, but not sex, confers significant risk for suicidal thoughts and behaviors and nonsuicidal self-injury in early adolescents and that the Columbia Suicide Severity Rating Scale may be a useful measure of suicide risk for some autistic youth, but it may not detect all autistic youth experiencing suicidal thoughts.

An important review of suicide risk assessment tools for youth concluded that only one measure, the Columbia Suicide Severity Rating Scale (C-SSRS; Posner et al., 2011), had moderate evidence in predicting future suicide attempts in non-autistic youth. However, the authors concluded that _no clinician-rated tools_have been developed and used to accurately assess STBs in autistic youth nor predict future risk of STBs and attempts in this vulnerable population (Howe et al., 2020). There is an urgent need for research on the use of the C-SRSS and other clinician-rated measures of suicidality in autistic youth, particularly in light of caregiver-youth rating discrepancies and high prevalence rates of STBs.

Assessing suicidal thoughts and behaviors and nonsuicidal self-injury in autistic and non-autistic early adolescents using the Columbia Suicide Severity Rating Scale – Jessica M Schwartzman, Rachael A Muscatello, Blythe A Corbett, 2023

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