As a child, stability and acceptance from others was an un-reachable concept for me.

Aside from the chaos at home, I often got labeled as, “a dreamer, scatterbrained or just stupid”.

In those days, any neurodivergence issue was treated by giving handfuls of pills and left on your own to figure things out.

In school, my teachers would make me sit in the hall during lessons, and my mother was too overworked to be bothered.

“Lost”, is the best way I can describe my childhood.

For these reasons, the place I call home doesn’t exist in this reality and never has. The motivation for becoming an artist was so I could unabashedly day dream and it is through art I have found myself.

This piece represents, ”A Worlds colliding scenario”, so to speak as it’s almost next to impossible to escape life and people being forced on us, all at once, all of the time thanks to mobile phones.

A sense of dread washes over me each time my phone rings and is quickly followed by anxiety due to time frame response.

The idea for this painting stemmed from my love of pop-ups and tunnel books. Each detail represents feelings, people and situations experienced in the 3d, translated from a 5d reality.

– Heike Blakley, hblkly@instagram

Collected below is community writing and research on the anxiety and inaccessibility of phone calls.

The 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 of us find ourselves simply unable to answer it and let it go to voicemail. Why is this?

Why Phone Calls Can be Incredibly Difficult for Autistic People and People with Anxiety

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

“Call and schedule an appointment”

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— Dani Donovan ✍️ ADHD Comics (@danidonovan) June 21, 2022

When AMASE conducted a survey about the mental health of autistic people around Scotland, we found that many had been excluded by such simple things as practices insisting on telephone contact

Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace

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)

“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)

Key findings – Care Quality Commission

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.

The existing evidence suggests that autistic people may prefer written modes of contact. For example, autistic adults perceived success of healthcare interactions is asso- ciated with their willingness to provide written mode options (Nicolaidis et al., 2015), and a survey on Internet use indicated that autistic people typically preferred email over face-to-face interaction (Benford & Standen, 2009). It seems that written communication may diminish some of the social interaction challenges autistic people experi- ence in face-to-face contexts. Benford and Standen (2009) interviewed autistic Internet users, who reported that writ- ten Internet-mediated communication provides more con- trol, thinking time, clarity and fewer sensory issues and streams of information that must be processed and interpreted. Similarly, Gillespie-Lynch et al. (2014) reported autistic people to perceive computer-mediated communi- cation as beneficial, as it provides more control and increased comprehension in interactions. Consequently, there are reports of autistic adults utilising Internet- mediated modes of communication to foster and develop social connectiveness and relationships (Burke et al., 2010). This previous research has focused on Internet usage, yet there are a range of similar communication modes available. This study aims expand this work and explore the autistic community’s communication mode preferences more broadly, in range of different scenarios.

‘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.

While difficulty deciding if symptoms warrant a visit was a barrier for both groups (72% vs 65%, n.s.), the most notable difference related to difficulties using the telephone to book an appointment (62% vs 16%).

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

Difficulty using the telephone to book an appointment was significantly associated with all adverse outcomes…

Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study | BMJ Open

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