Autistic Adults: A Study On Cognitive Therapy Experiences
Adults living with autism stand a high chance of experiencing mental health disturbances alongside their illness. Owing to this, autistic adults require access to adequate mental health therapy.
The efficacy and inclusivity or acceptance of mental health therapies for autistic adults, however, have not been previously well-analyzed or examined.
This study is aimed at gaining a better understanding of the preferences and experiences of autistic adults with regard to different mental health therapies or strategies. To achieve this, mixed study methods were employed.
Online surveys were carried out among autistic adults with respect to their experience of mental health therapies.
Of all autistic adults that participated in the survey, 88% had actually gone through mental health therapies. The majority of autistic adults that have gone through mental health therapy indicated that the cognitive-behavioral approach was employed.
It should be noted that the ability of the therapist to accept and understand the autistic adult during a particular mental health therapy determines the success of that therapy strategy. This is because these adults are satisfied as they feel the therapy is actually helpful to them.
Most autistic adults that participated in the survey noted that talking sessions were difficult to carry out and they were unable to actively engage in the therapy session.
Certain therapy techniques were noted to significantly improve mood and reduce anxiety. However, many autistic adults indicated that they encountered difficulties in applying the therapy strategies to their day to day life, due partly to their special needs associated with autism.
Being the first study to analyze and evaluate the mental health therapy experience of autistic adults, the results demonstrate the need to establish a therapeutic relationship that feels safe and relatable, giving room to bridge communication gaps and treatment specific to individual preferences and differences when choosing a particular mental health therapy method to employ.
Introduction
Autism, otherwise called Autism Spectrum Disorder (ASD), is a clinical condition where brain development is altered leading to difficulties in communicating, socializing and performing certain repetitive day to day tasks.
Being a spectrum, severity of this condition may vary significantly from one person to another. Some autistic adults may need some degree of assistance in performing basic actions, while others may be able to care for themselves and live independently.
The prevalence of adults with ASD who require adequate support for their wellbeing in the United States is about 2.2%. Mental health is identified as a critical aspect of support needed by autistic adults.
Results obtained from a meta-analysis showed that anxiety (42%) was the most common mental health issue encountered by autistic adults, followed by depression (37%).
Anxiety and depression both have a negative impact and effect on the general wellbeing, daily activities and life quality. They may also lead to increased suicidal tendencies among autistic adults.
For the general population, outpatient mental health therapy or psychotherapy is the first port of action for depression and anxiety. The desire to access mental health care among autistic adults has likewise increased and as such, efficient and adequate treatment is administered on an outpatient basis to autistic adults who are going through anxiety or depression.
In spite of this, there are still a handful of studies done to assess the effectiveness and acceptance of mental health therapy methods employed for autistic adults.
Of all mental health therapy methods, mindfulness based therapy (MBT) and cognitive behavioral therapy (CBT) are the most widely analyzed methods in autism.
A comparison of the efficiency and effectiveness of different mental health therapy techniques or the impact of individual-specific factors on therapy is yet to be carried out. This comparison, if carried out, will go a long way in advancing mental health therapy for autistic adults, and helping clinicians make informed decisions on the best therapy methods suitable for each autistic adult.
CBT and MBT are mental health approaches that involve a combination of several specific treatment methods.
Cognitive therapy focuses on pointing out and reshaping harmful or unhelpful thoughts, while behavioral therapy focuses more on reshaping harmful or unhelpful habits or behaviors.
For anxiety, behavioral therapy is done by repeatedly simulating anxiety provoking scenarios so as to help the person face it, rather than avoid it. This has shown to be helpful in overcoming anxiety over time.
For depression, behavioral therapy is done by what is called behavioral activation where the mood is enhanced by engaging autistic adults in activities with reward systems.
Additionally, CBT for anxiety usually involves certain relaxation methods that help reduce arousal physiologically. Some of these relaxation methods include muscle relaxation (repeatedly tensing and releasing some group of muscles), guided visual imagery (imagination of relaxing and soothing scenarios) and slow paced breathing (deep diaphragmatic breathing).
MBT involves mindful meditation as a principal technique, alongside other components of therapy which includes dialectical behavioral therapy (DBT) and acceptance and commitment therapy (ACT). ACT techniques involve the development of awareness free of judgement and acceptance of present experiences like touch and emotions.
However, no previous analysis has evaluated the efficacy and effectiveness of these mental health therapy techniques for autistic adults, and only a handful of studies have evaluated therapy techniques from the standpoint or perspective of autistic adults.
It is expected that the communication difficulties encountered by autistic adults may make some of these therapies impractical for use. This can be seen in cognitive therapy which requires constant monitoring of the thoughts and emotions, which will be difficult to assess in autistic adults as they are unable to identify and describe their thoughts and emotions.
Some other techniques which require constant attention and practice outside sessions for its effectiveness may be a challenge for autistic adults who are unable to carry out day to day activities by themselves.
A systematic review of studies focusing on the experiences of autistic adults accessing mental health care was conducted by Brede et al. In 2022. Most studies involved in the review had a broad scope on health care services with few mentions of mental health. The reports showed there were barriers to accessing health care. The study was done from the standpoint of healthcare workers and their attitude towards autism. It was noted that the study by Brede et al. failed to report these therapies from the view of autistic adults.
This study aims to fill the gaps by reporting from the perspective of autistic adults with regards to the acceptance and helpfulness of specific mental health therapy techniques.
To achieve this, a convergent mixed method strategy was employed to give a quantitative insight into the effectiveness of a variety of mental health techniques, as well as better understanding of individual differences in relation to the helpfulness of difficulty of a particular mental health therapy technique.
Being the first analysis on this topic, an exploratory and descriptive design was chosen to better inform and set a pace for future clinical practice and research.
Methods
This study was granted approval by the University of Virginia Institutional Review Board.
The study involved 303 autistic adults in the United States. They were recruited from the research match process of Simons Foundation Powering Autism Research for Knowledge (SPARK).
SPARK is a large-scale research company comprising a community of individuals with autism spectrum disorders. They recruit and engage them and their families to enroll online for studies by providing saliva for genetic analysis, and agreeing to be contacted for research opportunities in the future.
Participants were contacted via email, and were compensated $15 for participating in the study.
The study participants filled out 3 surveys which included a 14 part demographic survey, 28 part autism spectrum quotient-short survey (AQ-Short) and a 20 part mental health and therapy experiences survey. AQ-Short is a self report system which is continuously used to evaluate autism spectrum traits in adults.
The 14 part demographic survey included age, gender, race, socioeconomic class, ethnicity, living conditions and employment status. It involved a scoring system ranging from 1 to 4, with total attainable scores ranging from 28 to 112. The higher the score, the more autistic traits present.
The 20 part mental health and therapy experiences survey assessed previous therapy experiences, knowledge of the therapist on autism and the importance of the therapist’s knowledge as perceived by the autistic adult.
Here, participants were also asked questions on certain therapeutic techniques (like cognitive, behavioral, deep breathing etc.)
Follow up questions were also asked which included:
- How helpful were these methods?
- How easy were these methods to use?
The survey also ended with 2 open questions on the general experience with the therapy method.
Due to the ordinal nature of the data for mental health therapy techniques, non-parametric methods were utilized.
For age, highest educational level and examination of the relationship between autism traits and perceived effectiveness and simplicity of a therapy technique, the Spearman-Rank correlations were estimated.
For race and ethnicity, the Mann-Whitney U test was carried out.
For gender identity and highest educational level, a Kruskal–Wallis H test was done.
Data driven qualitative analysis was used to analyze open-ended responses to questions on mental health therapy experiences.
Inclusion Criteria
This trial included autistic adults aged 21 years or more (≥ 21 years), who are independent (i.e do not have a legal guardian) and have been medically diagnosed with autism spectrum disorder.
Results
The participants included in the study were within the age range of 21 to 77 years.
AQ-Short scores were in the range of 52 to 108.
Age at ASD diagnosis was in the range of 2 to 72.
The participants were majorly white (85.8%) and non-Hispanic (94.7%).
19.1% identified as transgender and non- binary, while 39.3% identified as non-heterosexual.
89.9% had mental health conditions occurring alongside autism. Of this, 88.8% had undergone previous mental health therapy.
Patient’s Demographic and Effectiveness/simplicity of Therapy Techniques
Age and level of education were found to have no role in improving or decreasing the helpfulness and simplicity of a therapy technique with the exception of a little correlation seen between age and ease of deep breathing technique. Race and ethnicity had no correlation with the perceived helpfulness and simplicity of therapy techniques.
AQ-Short Scores and Effectiveness/Simplicity of Therapy Techniques
Higher AQ-Short scores were seen to negatively impact the helpfulness of the guided visual imagery and exposure techniques.
However, other mental health therapy techniques were not significantly correlated with AQ-Short scores.
Overall Mental Health and Therapy Experiences
Two open ended questions were used to quantify the overall experience faced by autistic adults.
The first being; What did you find to be most helpful in the therapy?
The second question being; What did you find to be least helpful in the therapy?
87% of participants answered the first question, while 84% answered the second question.
Therapist’s knowledge on Autism and Helpfulness of the Therapy Technique
66.5% of autistic adults that have undergone mental health therapy deemed it very important that their therapist have a good knowledge of autism. 27% further expressed that the knowledge of their therapist on autism was crucial to the success of the therapy, as it helps them feel heard, validated and understood.
Room for Personal Growth with Therapy Techniques
32% of participants noted that the personal growth associated with therapy sessions were helpful.
Some reported that just talking through and processing things were very important to their growth. Some others also noted that getting an outside opinion helped.
Difficulties Communicating During Sessions
14% of participants reported that talking during sessions made therapy difficult. Some expressed that they didn’t know what to say, which made it hard to participate in the therapy.
Some others also expressed that they knew what they wanted to say, but went blank once it was time to speak.
Therapies with Structured Formats and It’s Helpfulness
11% of participants reported that well structured sessions were vital in their improvement.
Some expressed that having a clear goal and target helped them envision realistic expectations of what to get out of the session.
Others expressed that they found it unhelpful when therapists were not communicative of the basic science behind therapy and how the therapy should work.
Final Thoughts
Having an understanding from the standpoint of autistic adults is important so as to get a deeper insight on the practicality, acceptance and effectiveness of mental health therapy techniques and methods.
This information is of great value to therapists navigating the field of autistic adult treatment; this research provides the insight on what works from the patient perspective.
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