Autistic Adults’ Experiences of Counselling

In December 2020 we published a report, based on a questionnaire carried out at the start of the year, investigating autistic adults’ experiences of counselling and related talk therapies. You can access the full report and summarised versions below.

Jump to recommendations section.

This report follows on from the AMASE 2018 report ‘Too complicated to treat’? Autistic people seeking mental health support in Scotland.

Full version: pdf, html
(summary below)

We also held an online presentation of the report with a Q&A. A recording of the event is here:

You need support, validation, good coping skills. You need and deserve acceptance”: Autistic Adult Experiences of Counselling [summarised version]

Publication date: 28th December 2020

Authors: Sonny Hallett & Colin Kerr

With the support of AMASE (Autistic Mutual Aid Society Edinburgh)

www.amase.org.uk

Autistic people are more likely than non-autistic people to suffer from mental health difficulties, but they are also likely to encounter problems when trying to access counselling to help with their mental health. We used a survey to collect the experiences of autistic adults who have accessed counselling. We asked respondents what their counselling experience was like; what worked well, what didn’t work well, and what changes they’d like to see in counselling approaches for autistic people. We also interviewed some counsellors about their experiences of working with autistic clients to add extra background to our findings.

The results suggest that there are specific accommodations and approaches that could be really helpful for a lot of autistic people in counselling, and also that there are consistent problems that come up for a lot of autistic people when counselling doesn’t go so well.

About the authors
Sonny is a co-founder and chair of AMASE (Autistic Mutual Aid Society Edinburgh), an independent Autistic People’s Organisation based in Edinburgh, Scotland. In 2018 Sonny co-authored a report on barriers for autistic people in accessing mental health services in Scotland (www.amase.org.uk/mhreport). They are currently training to become a qualified counsellor.

Colin is an experienced mental health counsellor based in Edinburgh. He works predominantly with adults who have lived through adverse or traumatic experiences growing up and who struggle with a range of psychological, physiological and emotional distress. He has an interest in the overlap of autistic experience and distress. 

Both authors, and the overwhelming majority of readers, advisors and contributors to this report, are all on the autism spectrum.

Funding and support
AMASE (Autistic Mutual Aid Society Edinburgh) supported the authors in promoting the survey. There was no external funding.

The key themes

  1. Many autistic people want clearer information around counselling services: how it works, what it’s for, what’s ‘allowed’ and what isn’t.
  2. Counselling works much better when it is sensorily and physically accessible for autistic people.
  3. Counsellors sometimes don’t know how to read autistic people’s emotions, or might struggle with their communication differences, especially when they are in distress.
  4. Counselling can go better when counsellors and autistic clients work together to figure out the approach, and solve problems that come up. Autistic clients might need more support to feel able to do this.
  5. Counsellors, including some autism specialists, sometimes have out of date or unhelpful ideas about autism, or don’t know enough about autistic experiences and important issues that affect autistic people.

In this report, we use quotes from our participants to illustrate the findings from our survey, highlighting both things that seem to go wrong more often, and things that have often been helpful in counselling for autistic people. The report ends with a list of recommendations for counsellors, counselling services, and related mental health professionals on ways they can improve their services for autistic people in three areas: accessibility, practice approaches, and understanding.

The survey and sample
The authors shared the survey online and through AMASE (Autistic Mutual Aid Society Edinburgh)’s networks. The survey was active for two weeks, and open to autistic people aged 18+ who had experienced talk therapies for their mental health. Responses were anonymous. 66 people responded to the questionnaire. We also interviewed four counsellors who have worked with autistic clients, invited through the authors’ networks, to provide additional background to our findings.

The results

We read through the survey responses and identified common themes that they brought up. We then grouped the themes into five broader categories:

The Counselling Experience

“One thing that would have helped is if the counsellor could have explained what I could expect from them”

“It was very difficult to adjust to and to start to feel comfortable talking to someone I didn’t know. The communication went quite poorly at the beginning because I was incredibly anxious and scared”

Anxiety and uncertainty are big parts of the autistic experience. Participants highlighted the importance of clarity and detailed information around the counselling experience; what to expect, what it is, and what it isn’t. It is also clear that starting counselling, and meeting a new counsellor or service, can be an extremely anxiety-inducing thing for many autistic people, many of whom might also be worried because of difficult past experiences with counselling or related services, especially in being misinterpreted, ‘written-off’, or even turned away. The need for warmth, explicit reassurance, and feeling ‘seen’ and believed from the very beginning is incredibly important for countering many of these early fears, uncertainties and misgivings, and in building a more trusting and productive counselling relationship.

The Space

“My current therapist has been very careful and clear about settings and comfort in the space. She’ll turn the lights down or off if I need that, she keeps her voice low, she keeps her body in a steady posture. She has weighted blankets and fidgets in her office. I feel like I’m in control of my presence in her office, which makes it easier to feel safe and be able to be vulnerable in ways that work for me. Previous therapists have never offered this level of accommodation, and it never even occurred to me to ask. Rooms were always bright and cheery, and they put me on edge in ways I didn’t understand at the time.“

Light, noise and smells are common sensory challenges for autistic people. The sensory environment: lighting, sound, texture, smell; communication requirements (such as difficulty with using the phone); and how seating is arranged in the room, were some of the most common areas of either difficulty or useful collaboration on accommodations raised by our respondents.

When it comes to these access needs, respondents wanted counsellors who were proactive, made suggestions, validated their needs, and listened to and understood their requests. They also sometimes struggled with feeling comfortable with making requests, or knowing what would help or what is possible. Help and encouragement to self-advocate, ask questions, and collaboratively problem-solve was appreciated.

Feelings and Distress

“We might be having a harder time than it looks like on the surface. We might hold things inside because we worry we are overreacting. In the past, others may have made us feel like a burden, so we might do a lot of internal labour without telling our therapist. We might not be able to articulate our feelings. We might need to communicate nonverbally.”

“[…] I am often unaware of my own emotions or unable to describe them, I am so overwhelmed by emotions I have physical symptoms of distress, and I am exceedingly upset when my routines/plans are disrupted.”

“just because someone may be very skilled at masking doesn’t mean they aren’t in pain.”

Based on the frequency with which emotions, meltdown and distress were mentioned by our respondents, there is an urgent need for practitioners to believe clients when it comes to distress, and also for them to understand more about autistic distress and how it might manifest.

Participants reported being misread or disbelieved by mental health professionals when it came to anxiety and distress, and also expressed worry about that happening more in counselling due to difficult past experiences. Careful checking in on feelings by the counsellor, validating emotions, and not making assumptions about how the client is feeling, were seen as helpful and important by many participants.

Respondents also talked about difficulties with naming or identifying their own emotions, which sometimes made the counselling process difficult if they were not given adequate support and understanding. It was also a productive point of exploration for some in the counselling process.

Many also highlighted emotional regulation as an area that they wanted help with through counselling. 

Working Together

“[What was helpful was a] willingness to adapt and discuss why we were doing what we were doing “

“In the early sessions we spent a lot of time discussing how my autism affected me, what sensory issues I have, how my communication is affected etc so we can understand where my difficulties come from and how best to work on them.”

Counselling training rarely includes working with neurodivergent individuals, and the specific needs and challenges they may bring. Participants particularly valued flexibility in their counsellors, in working together and adapting their approaches to suit their needs and circumstances. Respondents wanted a good rationale for the work they were doing or approaches used, and some talked about struggling with instructions or questionnaires that were unclear or didn’t make sense to them.

Communication and processing differences might mean that sessions could benefit from being longer or shorter or structured differently for different clients. Other approaches to processing and communication were also mentioned as useful by respondents, such as art therapy.

A lot of the themes around working together relate to the building of the counselling relationship, in a way that empowers the autistic client to advocate for themselves, and feel in a position to take the lead or more actively collaborate. The counsellor is ideally flexible, open, willing to find creative solutions, and potentially understands enough about some of the context around autism and related themes to be a ready and able collaborator.

How Much Do You Know About Autism?

“At first there were a lot of sessions of just her [the counsellor] learning about autism and trans issues, from me and from her own research […] in hindsight I think it was actually a really good way to start building that early therapeutic relationship and for her to get to know me”

“Therapy gave me the confidence to start making connections outside of session and ultimately allowed me to find my tribe. I firmly believe I would not be here today had I not connected with a therapist. I had virtually lost hope. Talking gave me hope, and for that I am immensely grateful.”

Many participants brought up concerns around their counsellors not knowing enough about autism, or having outdated, overly rigid, or inaccurate ideas. Sometimes this was a particular issue with counsellors who claimed some particular knowledge or experience of autism, especially if their experience was mostly around autistic children.

Views were divided on how much counsellors needed to know about autism to work well with autistic clients, and some did have very good counselling experiences with counsellors who knew little, but were open and willing to learn – with that dialogue also adding to the collaborative process. However, many respondents also expressed particular frustration around counsellors not knowing enough about specific issues around autism and gender, communication, sensory issues, executive functioning, emotional regulation, etc. Some also highlighted the inequity of having to educate one’s counsellor on basic concepts, especially with limited time and energy available.

Many respondents talked about a need to understand and accept themselves more, and wanted help with that process through counselling, along with a hope of finding one’s ‘tribe’ or community. This, along with what they want counsellors to understand better, and the challenges many have already encountered with health professionals, points to a need for counsellors working with autistic clients to start with some basic reference points and points of understanding, along with an openness and willingness to explore with the client.

Conclusions & Recommendations

Our survey has highlighted a number of issues relating to autistic access to, and participation in, talk therapies.  These include barriers to access, such as sensory challenges, requiring phone communication, and lack of clear information and guidance; communication barriers, such as practitioners misunderstanding or not believing autistic people, or autistic clients struggling to get appropriate support in getting their needs across; and barriers related to autism awareness and understanding amongst practitioners, including lack of knowledge amongst counsellors, outdated or inaccurate knowledge, including amongst those described as autism specialists, and lack of broader knowledge in areas related to autism, such as gender, co-occurring conditions, etc. These themes are also  consistent with previous research into autistic barriers to healthcare more generally.

This report also covers some newer ground in delving deeper into the specific impacts of these barriers on autistic clients in a counselling context, as well as exploring ways that talk therapies can be adapted to be better for autistic clients. It is clear that there are areas of excellent practice happening that are changing lives, and those approaches need to be better publicised and understood. There is also far too much troublingly poor practice that is at best turning individuals off further talk therapy, and at worse, further traumatising autistic people. 

Autistic people are a vulnerable population when it comes to mental health difficulties and outcomes, and also disproportionately impacted by barriers to appropriate social and mental health support, so this is a particularly important area for practitioners and health care providers to understand better.

From the findings of this report, the examples of good practice and negative experiences, as well as other input from our respondents, we propose the following recommendations:

ACCESS

  • There needs to be better provision of clear information, and better education, on what counselling is, what it’s for, and what to expect for autistic people. There could also be better support for autistic clients in how to get the most out of counselling, and how to self-advocate in counselling situations.
  • Counselling services need to be more accessible for autistic clients, which can mean that communication methods need to be flexible, and there is more support around the practical aspects of accessing a service.
  • Counselling spaces need to be adaptable for the sensory needs of autistic clients, and counsellors should be mindful of these needs when working with autistic clients, and proactive in finding solutions to accessibility issues.
  • Homework and paperwork (forms) provided in sessions should have a sound rationale for the client, and need to be clear and accessible. Alternative approaches should be explored when necessary.

PRACTICE

  • Practitioners working with autistic clients need to be mindful of differences in communication and emotional cues. Counsellors should be proactive in checking in, and autistic clients need to be believed when they say they are in distress.
  • Counsellors working with autistic clients should be flexible and open in their approaches, and able to adapt their practice to the client, including with communication styles, session structure, overall approach, etc.
  • Collaborative approaches that encourage self-advocacy, self-acceptance and self-understanding may be particularly helpful for many autistic clients. This often needs to start with clarity, reassurance, and a sense of safety from the therapist.
  • Practical solutions and understanding, especially around interpersonal issues, sensory and emotional regulation, and executive functioning, may be really valuable for some autistic clients, but caution must be taken that the therapist is not attempting to (purposefully or inadvertently) ‘make the client more neurotypical’, or impose their own normative values or assumptions.

UNDERSTANDING

  • Counsellors should have some understanding of the life-context of what being autistic might mean for a person, including a grounding in what is/isn’t accurate about autism (particularly common misconceptions), and what common challenges autistic people might experience, both socially and more personally.
  • Practitioners should be aware of issues around expressing and identifying emotions (including shutdowns, meltdowns and burnout) and not apply neurotypical standards to reading or assessing autistic emotions.
  • Counsellors should be aware of the Double Empathy Problem (see link) when working with autistic clients.
  • Counsellors should be aware of gender and LGBT+ issues, particularly women and gender minorities, and how those issues relate to the autistic population.
  • It would be helpful for counsellors to have some understanding of the ways in which autism can intersect with commonly co-occurring conditions and issues, particularly trauma, anxiety, and physical health issues.
  • It would be helpful for practitioners to understand something of the broader context around autistic community, neurodiversity, social model of disability, and the value for some of forming an autistic identity and/or ‘finding their tribe’.
  • Counsellors should be more educated on autism through first-person accounts of autistic experience, and writing, training and research led by autistic people. They should also ‘hold this knowledge lightly’, acknowledging the heterogeneous nature of the autistic population, and be open to new information and ideas.

We also hope that this will encourage autism-related training, led by autistic people, to be a part of counselling training curricula, and that there might be more support for greater autistic and otherwise neurodivergent representation at all levels of counselling and mental health care – as practitioners, trainers, supervisors and policymakers. In particular, recognising the importance of training led by autistic counsellors.

Autistic people may be a neurological minority, but they are a significantly under-served one. We also believe that some of the recommendations and findings in this report can be helpful more generally in encouraging greater accessibility, flexibility, and understanding by therapists and therapeutic services, in better-serving a far broader range of marginalised communities. The diversity of the autistic population, and the challenges to talk therapy approaches and practitioners that it brings, have lessons to teach counsellors working with anyone.

We hope that the findings and recommendations from this report will help to encourage practitioners to seek more information on autism, the autistic community, and ways to make their practice more accessible for autistic clients. If there’s one thing the respondents’ generous contributions have put across, it’s that autistic people have a wealth of knowledge about what we need and how we’d like to be supported, but suffer too often from not being listened to, believed, or understood – we hope that this will also make clear the need for practitioners seeking further information and resources to prioritise seeking out writing, research and training by autistic writers, practitioners and trainers.

This is the summarised version of the report. To read the full version with more detail and quotes from participants, references and appendix, please go to [link]

Acknowledgements

We would like to thank all of our survey respondents, interviewees, advisors and readers for making this report possible. We have asked all of those involved if (and how) they would like to be acknowledged. Thank you to the following (listed in no particular order), as well as to all of those who wished to remain anonymous.

C.L. Bridge, Jenny Quinlan, SJ, KEB, Lexi Orchard, Ellie Tait, Sarahdbristol, Ahjohnmusicsavant, Kat Bhend, Fergus Murray, Mary Lye, CM Scottish Highlands, Angeline B. Adams, LynneR309, Helen, AspieJedi, Soazig Métrope, Elkie Kammer, Dr Mary Doherty, Adult autistic man diagnosed in my 30s, Mónica, Georgia, Sara, Kay L, Michael Crosby, AMASE members and committee, Stephen Hallett, Shirley Moore, Kabie Brook, Catherine Crompton