By Dr Michelle Garnett and Prof Tony Attwood
Over our combined 80 years of clinical experience in this area we have found that awareness and knowledge of autism is a crucially important component to the successful assessment and provision of therapy, intervention, and support for autistic people. Without this awareness, there is a risk of causing harm rather than help.
There is now research demonstrating that treatments provided to autistic individuals for cooccurring conditions or life problems, such as relationship issues, that are not adapted to the characteristics of autism lead to no results or actually worsen the situation. For example, Tchanturia and colleagues (2016) found that anorexia nervosa patients with high autistic traits showed no improvement to group cognitive remediation therapy, compared to anorexia nervosa patients with low autistic traits. A study conducted with 200 autistic adults by Camm-Crosbie and colleagues (2019) reported that most of these adults had negative past experiences of treatment and support, and subsequently avoided psychiatric and psychological services. They reported the treatment was not suited to their needs and did not accommodate the characteristics of autism. Maxine Aston and Tony Attwood are currently conducting research on autism and relationship counselling and preliminary results suggest that the provision of conventional couples counselling for couples where one or both partners are autistic was rated as achieving a negative outcome for 41% of couples and a positive outcome for only 22% of couples.
According to the Centers for Disease Control and Prevention (CDC), the prevalence of autism in 2022 was estimated as one in 44 eight-year-old children (CDC, 2022). However, this is a conservative estimate, as many autistic adults camouflage and supress their autistic characteristics in social situations or choose a career that minimises the effects of autism, a form of compensation. It is therefore highly likely that most medical and allied health professionals are treating autistic adults in their caseload, whether they are aware of it or not. In previous blogs we have described how to recognise autism in the first session (Signs of Autism When First Meeting a Client) and the importance of increased knowledge and awareness of autism in our community for the increased well-being of our autistic community members (Autistic Adult Relationships with Family and Friends).
In this blog we wish to share eight key insights from our journey in autism, aiming to assist professionals to make modifications to their assessment and treatment practices to increase their success as professionals assisting our autistic community members.
8 Tips for providing autism friendly support and therapy
- Increase your knowledge about autism, especially the social codes of autism. Autistic social engagement can look different to engagement by a non-autistic person . For example, an autistic person may use less eye contact than you may expect, have fewer facial expressions, and not always answer questions in the way you expect. If your client’s nonverbal communication is difficult to read or you are finding that you are making negative judgements about them, consider that their social codes may be different to yours, and you may be misreading them. Double empathy was first recognised and described by Milton (2012) and explains that as much as an autistic person may struggle to understand the nonverbal communication of a non autistic person, non-autistic people struggle to read autistic people. The double empathy problem is thought to cause increased mental health issues for autistic people (e.g. Mitchell et al 2021) and increases client dissatisfaction with and withdrawal from services (Camm-Crosbie et al 2019).
- Allow time. One of the characteristics of autism is that when you are speaking to the autistic person they are listening intently instead of formulating what they are going to say next. This means that when you finish speaking, they need time to process the information and then to formulate their reply. Interrupting them as they are thinking and finishing their sentences or pre-empting what they are going to say will make the process frustrating for them and will take longer. Also, consider either audio or video taping your sessions. Often valuable information can be forgotten, because the person was so busy processing your earlier comments, they missed what you said subsequently.
- Use other modalities than talking. Non-autistic people rely on looking at each other, using a lot of eye contact, and speaking while seamlessly and effortlessly reading non-verbal communication. This neurotypical method of communication will be sometimes out of reach to the autistic person and when achieved, the process is exhausting, and often leads to inaccurate information from the autistic person who is anxious and overwhelmed.
Completing questionnaires, both psychometric and self-report, can be a very helpful way of increasing accurate information. Using journaling, or emails in between sessions, is a very useful adjunct for therapy to understand what is going on in the autistic person’s internal world. We also encourage use of art, images, and a play list of music tracks to communicate emotions.
- Consider the sensory and social aspects of your therapeutic environment . Typically, an autistic person will be overwhelmed if there are more than one to two people in the waiting room, and feel completely overwhelmed if there are many people, such as group therapy and residential treatments. Most autistic people have sensitivity to sound, having a television or loud music in the waiting room is likely to increase their anxiety and reduce their communication capacity once they start to see you. Consider your lighting. Certain types of lighting, such as fluorescent and halogen, can be very distressing for an autistic person. Also consider the smells in the room. Strong perfumes, deodorants, coffee, and cleaning products can cause problems in concentration and communication. In addition to commonly having problems with each of the five senses, an autistic person can have problems with interoception, that is the ability to recognise and describe their own bodily sensations. Consequently, problems with interoception can interfere with an accurate assessment of medical conditions and mental health conditions.
- The high possibility of alexithymia. Alexithymia describes a condition that increases the risk of mental illnesses such as depression, anxiety disorders, addiction and eating disorders. The prevalence of alexithymia in autism in over 50% compared to 4% in the general population (Kinnaird, Stewart & Tchanturia, 2019). Having alexithymia means that it is very difficult to describe internal experiences such as one’s own thoughts and emotions, as well as to recognise and describe one’s own bodily sensations (interoception). We have found that a successful modification for therapy for mental health concerns is to treat alexithymia, i.e. to increase the person’s awareness and understanding of their own emotions, and how they feel these in their own body. The above recommendation to encourage the use of art, images, and play lists to communicate emotions is very relevant in both treatment and accommodation of alexithymia.
- Be flexible with your language. Many autistic adults now strongly prefer being called autistic rather than a person with autism. However, research shows that many parents and professionals still prefer person first language. If your client tells you they are autistic, listen carefully to their language and be sure to match it.
- Use a communication style that is respectful, warm and sensitive. An approach similar to that used for clients who have experienced trauma is a good model. Many autistic adults have learned not to trust people, because they have been victimised and abused by them. This abuse starts early via bullying at school. As a result, trust can take longer to establish with autistic clients.
- Educate the client about your expectations and ensure your expectations are within their capacity. Clients new to therapy may struggle to understand their and your role in therapy, and it can be useful to provide written information on roles, conventions and expectations. Many autistic people struggle with intolerance of uncertainty, and this trait combined with their social communication struggles can lead to avoidance of therapy because it is perceived as being too stressful. Providing information about what they can expect in your sessions, and what you expect of them, can allay these fears. Additionally, we find setting a visual agenda for the session can help and be sure to include topics important to your client. Written information can assist your autistic client to feel comfortable with the style of communication and level of disclosure to utilise within therapy, as well as their role as client.
There are many things health professionals can do to assist their clients to feel more comfortable and understood within a clinical setting. This article has described eight important ideas to incorporate when working with autistic clients.
Where to from here?
On January 19th & 20th 2023, we will be conducting a live two-day masterclass in London: Diagnosis and Therapy for Autistic Girls & Women. Day one will focus on assessing and confirming autism using a range of instruments based on research studies and our extensive clinical experience. The second day will take the themes of this blog further, providing information on support and therapy to develop a positive sense of self, enhance strategies for self-advocacy, executive functioning, emotion understanding and regulation, to improve friendship and relationship abilities from early childhood to the adult years, and how aspects of autism can contribute to a successful career. Adaptations to conventional therapy will be explained to accommodate the profile of abilities and experiences of autistic girls and women in the treatment of common clinical presentations including anxiety and depression, eating disorders, and gender dysphoria.
Participants can choose to attend live in London, England, or via live webcast. The recorded training will be available for participants to view for 60 days after the event, even if they can’t attend live.
Camm-Crosbie, L. Bradley L., Shaw R., Baron-Cohen S., & Cassidy S. (2018). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism 23 1431-1441 https://doi.org/10.1177/1362361318816053
Kinnaird E, Stewart C, and Tchanturia.K (2019). Investigating alexithymia in autism: A systematic review and meta-analysis; European Psychiatry, 55: 80–89. doi: 10.1016/j.eurpsy.2018.09.004: 10.1016/j.eurpsy.2018.09.004
Milton D. E.M. (2012) On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887, DOI: 10.1080/09687599.2012.710008
Mitchell, P., Sheppard E., & Cassidy S. (2021). Autism and the double empathy problem: Implications for development and mental health, British Journal of Developmental Psychology, 39, 1, (1-18).https://doi.org/10.1111/bjdp.12350
Tchanturia, K., Larsson, E. & Adamson, J. How anorexia nervosa patients with high and low autistic traits respond to group Cognitive Remediation Therapy. BMC Psychiatry 16, 334 (2016). https://doi.org/10.1186/s12888-016-1044-x