Tag Archives: mental health

Autistic Women* and Health Communication

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Autistic Women* and Health Communication

Autistic individuals generally experience more health issues than non-autistic individuals (Weir, Allison & Baron-Cohen, 2022). Autistic women face a range of health concerns that can be both physical and mental. Some of the common health concerns faced by autistic women are:

Mental Health: Autistic women are at a higher risk for developing mental health conditions like depression, anxiety, and obsessive-compulsive disorder (OCD). They may also experience higher levels of stress, which can negatively impact their mental health.

Sensory Processing Issues: Many autistic women experience sensory processing issues, which can include hypersensitivity to light, sound, touch, or smell. This can lead to discomfort, pain, and stress.

Digestive Issues: Autistic women are more likely to experience digestive issues like irritable bowel syndrome (IBS), constipation, and acid reflux. These issues may be related to food sensitivities or intolerances.

Sleep Problems: Autistic women may struggle with sleep, including difficulty falling asleep or staying asleep. This can lead to fatigue and other health issues.

Hormonal Issues: Autistic women may experience hormonal imbalances, including irregular menstrual cycles, polycystic ovary syndrome (PCOS), and thyroid problems.

Eating Disorders: Autistic women are at a higher risk for developing eating disorders like anorexia, bulimia, or binge-eating disorder.

Chronic Pain: Some autistic women experience chronic pain, including joint pain, headaches, and muscle pain.

Autoimmune Disorders: Autoimmune disorders such as Coeliac disease and Lupus are more common in autistic women.

Migraines

It is important for autistic women to receive appropriate medical care and support to address these health concerns. A healthcare provider who is knowledgeable about autism can help autistic women manage these issues and improve their overall quality of life. Autistic women with fluent speech are likely to represent themselves to healthcare providers, but for a variety of reasons may struggle to represent their issues within their healthcare settings. We have certainly found that many women in our clinical practice report that they struggle to attain the services they need, and for their needs to be understood and accommodated by their healthcare professionals.

Why do fluently speaking autistic women struggle with communication with healthcare providers?

Some of the difficulties autistic women can face when discussing their health issues with healthcare providers include:

  • a different perception of pain and discomfort, usually a higher, but sometimes a lower pain threshold, leading to under-reporting of symptoms or facing not being believed due to the amount of pain/distress described.
  • slower processing of social and emotional information.
  • difficulties expressing emotions verbally, including having alexithymia (difficulty both detecting and describing emotions using speech).
  • emotional challenges leading to ‘shut down’ and situational mutism
  • co-occurring social anxiety.
  • semantic or auditory processing difficulties, especially if there is background noise and conversations.
  • non-verbal skill difficulties, including processing of facial expressions, speech and gestures.
  • misinterpretation of questions, due to literal thinking, anxiety, or theory of mind (perspective-taking) difficulties.
  • sensory experiences often present in healthcare environments, including electronic noises from medical equipment, bright lights, certain odours, and physical contact.

Many autistic women experience an interaction of these social, emotional, communication, and sensory challenges.

Research findings on health communication for autistic women

One of us (MG) had the privilege to be involved in a research study investigating the challenges that may be involved for autistic women as they sought healthcare (Lum, Garnett & O’Connor, 2014). The study was led by Michelle Lum who recruited 58 adult female participants, approximately half of whom were autistic. An exploratory questionnaire was developed by using qualitative feedback from autistic women in addition to a literature review. The two groups were compared to determine whether autistic women experience greater healthcare challenges than non-autistic women in both general and maternity healthcare.

The results indicated that there were definite healthcare challenges for autistic women compared to non-autistic women. Autistic women experienced more healthcare anxiety, greater difficulties with communication whilst under emotional distress, anxiety related to the presence of other patients in the waiting room, more challenges accessing support during pregnancy, and more difficulty communicating their pain and needs during childbirth. 

Perhaps not surprisingly, only 75% of the autistic women disclosed that they were autistic to their health professional due to concerns about stigma. This is concerning because voluntary disclosure may enable specific accommodations to reduce the challenges that women experience and to flag the physiological conditions that are associated with autism, as described above.

All the women in the study had encountered healthcare professionals with limited or inaccurate knowledge of autism and found this extremely frustrating. Sixty percent of women said that they would find healthcare information relating specifically to their needs as an autistic woman as being frequently or always useful, compared to 25% who said this would sometimes be useful and 6% who said “never/infrequently.”

Accommodations that may reduce the healthcare communication challenges that autistic women experience

One of the major accommodations to assist autistic women in healthcare settings is increasing the healthcare provider’s awareness of autism allowing them then to accommodate their individual patient needs and reduce healthcare anxiety. Whilst this accommodation is out of the control of many autistic women, it remains a strong need in the healthcare community and, with the latest figures showing the high prevalence of autism, being one and 36 children (Maenner et al, 2023), awareness of autism in our community is necessarily growing.

Autistic women can search to find a GP in their area who understands autism and can educate their GP on  their own specific needs, as they understand them, and they can request that their GP help them to discover more needs over time. We have found that giving people the information they may need to know at a particular time can be helpful, either as a spoken or written Social Story ™ (https://carolgraysocialstories.com/). For example, if describing emotions is difficult, saying, “I am the sort of person who struggles to put my feelings into words, but I have a Feelings Wheel we could use which may help me” may be helpful. The Feelings Wheel (hyperlink to https://feelingswheel.com/) can be downloaded and taken along to consultations. Or if processing time is an issue, the person may say, “I am the sort of person who needs time to process oral communication. Please allow me more time to process what you are saying before I answer.”

Healthcare practitioners can accommodate autism within the workplace by asking if there are any social, emotional or sensory issues they need to be aware of. Some of these may include attending to sensory overload, for example overcrowded waiting rooms, strong smells of perfume and cleaning products, allowing more processing time within interviews and enhancing communication by the use of resources, for example, visual pain scales. They can support their autistic patients to use strategies that would assist their management of sensory and emotional challenges, for example, the use of noise cancelling headphones or earplugs in the waiting room, and provision of written information at interview, rather than relying on verbal discourse.

*NB: Please note that wherever gender is referred to in this article we are referring to the gender assigned at birth.

References

Lum, M., Garnett, M., & O’Connor, E. (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder, Research in Autism Spectrum Disorders, Volume 8, Issue 12, Pages 1713-1721, ISSN 1750-9467, https://doi.org/10.1016/j.rasd.2014.09.009.

Maenner MJ, Warren Z, Williams AR, et al. (2023). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-2):1–14. DOI: http://dx.doi.org/10.15585/mmwr.ss7202a1.

Weir E, Allison C, Baron-Cohen S. (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data. Mol Autism. 2022 May 26;13(1):23. doi: 10.1186/s13229-022-00501-w. PMID: 35619147; PMCID: PMC9135388.

Ageing and autism

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Ageing and autism

Over the last decade, we have seen an increasing number of mature adults seeking confirmation of autism in their developmental history and profile of abilities. This has provided an opportunity to explore ageing and autism using a cross-sectional approach, that is the expression of autism within specific decades and a longitudinal approach by regularly seeing some autistic adults over several decades. Research has also recently been conducted on ageing and autism using semi-structured interviews. A study by Wake, Endlich and Lagos (2021) included 150 research participants with an age range from 50 to 80 years. Tony has been an associate advisor to a PhD study that used a detailed analysis of ten autistic adults aged from 53 to 74 years (Ommensen et al). In this blog, we examine autism and ageing based on both research and our extensive clinical experience.

Autistic adults over the age of 50, colloquially known as the Baby Boomers, were unable to benefit during their childhood and adolescence from our current range of support programmes at school and home that improve social understanding and friendships skills, as well as develop a positive sense of self.  They have also not had access in their early adult years to therapy specifically designed to reduce feelings of anxiety and depression in autistic adults and they missed out on the environmental and attitude adaptations that we now have to support autistic adults at work. It is interesting that despite a lack of understanding and support throughout their life, some mature autistic adults have achieved a successful and enjoyable quality of life and well-being that will be valuable information for those designing interventions and support for future generations.

Recognition of autism late in life

Our clinical experience is that recognition of autism later in life is a positive experience, with research confirming that nearly 80% of participants feel a sense of relief and being liberated, as illustrated in the following quotations from Wake, Endlich and Lagos (2021) study.

“I felt I didn’t have to blame myself any more for being me … at least not so much.”

“It was so nice to have a name for it!  And it allowed me to join a support group and start learning more about myself, as well as being clearer about which aspects of being on the spectrum I could work on and which I would just have to live with.”

Most research participants in the study felt relieved and better about themselves following confirmation of being autistic but upset that they had lived such a great part of their lives without knowing. The overwhelming majority recognized they were different to their peers during early childhood (95%) but without knowing why. They were often intellectually able students but had miserable experiences at school. It seems that the greatest distress came from not just being different, but from not having words or concepts to express their autism or someone to confirm the pattern of autistic characteristics. All research participants regretted not having their autism confirmed earlier in life.

After the recognition of autism in their mature years, there were changes in terms of feeling better about themselves (67%) and making sense of who they are. There was a reduction in self-blame, restructuring their lives based on strengths and abilities and finding support communities. There was also less inclined to engage in camouflaging autism (Bradley et al 2021).  There were also beneficial effects on mental health as expressed by one research participant who said:

“My depression lifted without medication”.

Coping reactions over time

Attwood (2007) described two internalizing and two externalizing reactions to autism that can be recognised in childhood that can extend into the adult years. The two internalizing reactions can be depression and escape into imagination or academics. The two externalizing reactions are denial of being different and suppressing autistic characteristics and creating a social mask (camouflaging). Wake, Endlich and Lagos (2021) found that these coping strategies were more common in adolescence and early adulthood, but gradually reduced in midlife. This was probably due to using other coping strategies such as self-acceptance and a positive perception of autism. There were also improvements in understanding social situations, less need for rigid routines and time alone and being bullied and teased less often. Our clinical experience confirms the change in coping reactions over time.

Social abilities

Our clients have described having a gradual improvement in social abilities and number of friendships, which included having autistic friends after confirmation of their autism. There is a desire to connect with others intellectually and in the later years, a desire to help other autistic adults. However, socializing remains effortful and energy draining and a lifelong problem.

Ommensen and colleagues found that four out of five autistic adults described experiencing an improvement in social abilities in their mature years, but for one in five, these abilities declined. We speculate that improvement of social abilities may have been due to autistic adults using cognitive rather than intuitive abilities to process social information. A characteristic of ageing in later life is a reduced functioning of the frontal lobes which may explain their reported experience of a deterioration in social abilities.

Employment and relationships

Nearly 60% of the research participants in the Wake, Endlich and Lagos study (2021) indicated that autism had made employment difficult but 26% indicated that autism had helped them in their chosen careers. Our recent self-guided workbook Autism Working provides advice, strategies and activities to manage the difficulties that can arise at work for autistic adults (Garnett and Attwood 2022). We wrote the book with the knowledge that many autistic adults struggle to find and maintain work, despite having many qualities and abilities that are advantageous in the workplace.

A source of stress in the mature years was relationship difficulties, especially a perceived failure to meet the emotional needs of their partners. The Wake, Endlich and Lagos (2021) study found that 26% of participants described how they have never really been close to anyone. The study also found more diversity in sexual orientation for both genders than in the general population. This is consistent with our clinical experience.

Quality of life

There have been several research studies on the quality of life for autistic adults. McConachie et al (2009) confirmed that quality of life was associated with a positive autistic identity and other people’s understanding and acceptance of autism. Other factors affecting the quality of life included mental health issues, the nature of friendships and external support and services. Mason et al (2018) found that the quality of life was lower for autistic adults compared to the general population and that the positive predictors for quality of life were being employed, in a relationship, and receiving support. Negative predictors were mental health conditions and the severity of autistic characteristics.

Maja Toudal is a clinical psychologist and autistic colleague in Denmark. She conducted an internet survey asking autistic adults to describe their concept of quality of life and wellbeing. Their responses included:

To not be disturbed

Not having to act a certain way just because it is supposedly normal or appropriate

Having my own place to hide

Being able to express and be understood

Being able to excel in what you love to do

Space to pursue interests/hobbies

Daily engagement with special interests

Freedom from excess sensory pain/disturbance

Having a purpose in life

Accepting my autism and working with it to create harmony in my life instead of difficulties

It is interesting to note that a sense of wellbeing and quality of life was associated with reduced aversive sensory experiences and being able to engage in a special interest. This is important information when supporting an autistic adult.

The study of Wake, Endlich and Lagos (2021) found that there was an overall improvement in the quality of life for autistic adults after age 50, both in terms of effective coping strategies and improved mental health.

Mental health

Many research participants experienced mental health problems in their teenage years, but not understanding what they were going through at the time and not being able to effectively explain their thoughts and feelings to family and professionals. In the above study, over the age of 50, high levels of anxiety were reported by 74% of research participants and depression by 72%. In the same age range, suicidal thoughts were reported for 38% of participants. One in three of the research participants reported having post-traumatic stress disorder with a history of experiencing abuse in childhood and adolescence.

According to both the Ommensen et al study and that of Wake, Endlich and Lagos (2021) there was distrust and disdain for most forms of conventional treatment and health professionals, especially medical doctors. They felt they were not listened to or understood and unfairly judged and misrepresented, as illustrated in the following quotation.

“They were not interested in me. They’re interested in the drugs they can sell”.

An aversion to drugs was a common theme. Some participants had been prescribed medication for anxiety or depression but found them either unhelpful or the side effects off-putting.  There was also the issue of compliance in taking the medication as illustrated in the following quotation:

“She sent me off to see a psychiatrist and he told me … give me anti-depressants and I … said well, a. I don’t think I’m depressed, b. I’m still breastfeeding and c. you know, can we not talk about this? And he said if I wouldn’t take the antidepressants there was no point me seeing him. So that was the end of our visits. I didn’t take the antidepressants”.

Recovery from depression was slow and lengthy but the majority of participants reported that as they had grown older, they had experienced an improvement in their mental health. This was often due to discovering strategies themselves through identifying patterns in their experiences and emotional reactions and reading and experimentation rather than advice or therapy from health professionals. Several participants in the Ommensen et al study were of the view that psychological treatment was not worthwhile unless it was tailored to an autistic individual’s unique needs and circumstances. Since for most research participants professional help was not seen as a therapeutic option, alternative self-regulatory strategies were actively discovered and employed to regulate emotions. Some of these were maladaptive practices such as the use of alcohol, but most were positive.

Mindfulness, meditation, and spiritual and physical activities, such as gardening, were consistently mentioned as successful techniques for emotional self-regulation. These activities, and sometimes a combination of them, were typically enjoyed as calming solitary pursuits that had developed over the life span and were cited by several participants as important to helping them to achieve a sense of peace and emotional stability without the negative side-effects of medication.

Some conventional cognitive techniques were successful, such as positive self-talk

“I used to try and sort of gee myself up and say, “oh come on for goodness sake” you know you can manage this” and all that sort of thing.”

According to Ommensen et al, with time and life experience, participants had developed greater self-awareness and, ultimately, self-acceptance and self-forgiveness. Their positive appraisal of life left less room for negative emotions such as regret and guilt. The sub-theme of resilience was prevalent throughout the two studies. The participants conveyed stoicism and a lack of self-pity as they each described how they managed, with persistence and determination, a lifetime of mental health issues, relationship and employment difficulties, and feelings of difference and failure. This suggests that acceptance-based therapies would be particularly beneficial for autistic adults.

Medical issues

Research and clinical experience indicate that menopause can be a difficult time for autistic women with an increase in autistic characteristics and more meltdowns as illustrated in this quote: “During menopause I was on 3 meltdowns per week” (Mosely, Druce and Turner-Cobb 2020). Throughout life, there were concerns regarding insomnia or other sleep disorders, allergies and obesity.

There is ongoing research exploring whether there is an association between autism and early onset dementia (Vivanti et al 2021) and Parkinson’s disease (Croen et al 2015). Preliminary research indicates that there may be significantly increased rates of these two medical conditions in autistic adults.

Factors contributing to a positive outcome

Our clinical experience and research suggest that factors contributing to a positive outcome tend to be personal and interpersonal. Personal factors are self-acceptance and a lack of self-pity, such as the comment “I can look back now and cut myself a bit of slack” celebrating the qualities associated with autism and a positive outlook. This includes having a sense of humour, positive reframing, and less self-blame such as the comment:

“I used to think I could make people like me if I tried hard enough. Therefore if they didn’t like me, it was my fault”.

Another factor was discovering new enjoyable activities such as volunteer work and community groups and feeling there was less pressure to conform to society’s standards and focus on activities that brought pleasure and a sense of fulfilment. For many, life experience engendered resilience and, in later life, increased self-awareness and acceptance. Interpersonal factors include connecting with other autistic adults and development of autistic friendships and a sense of belonging.

As explained by Ommensen et al, relative to earlier life stages, later life in the typically developing population generally brings emotional stability and improved emotional wellbeing, reductions in mental health problems, contentment, and a positive outlook. It seems that this pattern is also reflected in the developmental trajectory of autistic adults. There is the potential for positive change in the mature years.

Where to from here?

On September 7 and 8 later this year, we will be conducting a live two-day Masterclass in Sydney: Diagnosis and Therapy for Autistic Adults. Day one will focus on assessing and confirming autism using a range of instruments based on research studies and our extensive clinical experience. The Masterclass will assist clinicians to recognise autism in a variety of presentations, assessing co-morbidity and differential diagnoses and will review the range of screening instruments and standardised assessments or scales. The second day will take the themes of this blog further, increasing the clinician’s knowledge of autism and how to modify therapy for a range of autistic clients.

Professionals can choose to attend live in Sydney, Australia, or via live webcast. The recorded training will be available for participants to view for 60 days after the event. The webcast will also eventually be posted in our library of webcasts that can be accessed for several months after the original date of webcasting.

References

Attwood T. (2007) The Complete Guide to Asperger’s Syndrome, London, Jessica Kingsley Publishers

Bradley et al (2021) Autism in Adulthood 3 320-329

Croen et al (2015) autism 19 814-823

Garnett and Attwood (2022) Autism Working: A Seven-Stage Plan to Thriving at Work London, Jessica Kingsley Publishers

Mason et al 2018 Autism Research 11, 1138-1147

McConachie et al 2020 Autism in Adulthood 2  4-12

Mosely, Druce and Turner-Cobb (2020) Autism 24 1423-1437

Ommensen, B. University of Queensland PhD thesis to be submitted

Vivanti et al (2021) Autism Research 1-11

Wake, Endlich and Lagos (2021) Older Autistic Adults in Their Own Words: The Lost Generation AAPC Publishing, Shawnee, KS.

What is autistic burnout?

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What is autistic burnout?

An autistic life is not an easy life. There is the potential for great stress and chronic exhaustion from trying to cope with social and sensory experiences, being misunderstood and criticized, high levels of anxiety and, for many reasons, not feeling in touch with or able to be the authentic self. In addition, there may be self-imposed expectations that are greater than coping mechanisms and abilities. Subsequent stress can build up over time that can lead to autistic burnout, which is characterised by increased social withdrawal, a form of ‘hibernation’ and reduced executive functioning, the frontal lobes are “closed” awaiting recovery.

Signs of autistic burnout

The concept of an autistic burnout has come from autobiographies, Internet support groups and clinical experience. The provisional criteria for autistic burnout, according to Higgins et al (2021) are:

Significant mental and physical exhaustion.

Interpersonal withdrawal.

With one or more of the following:

Significant reduction in social, occupational, educational, academic, behavioural, or other important areas of functioning.

Confusion, difficulties with executive function and/or dissociative state.

Increased intensity of autistic traits and/or reduced capacity to camouflage/mask autistic characteristics.

There can be associated features such as:

Low self-esteem and not knowing what to do to restore mental energy levels.

Confusion as to whether the signs are indicative of a clinical depression.

Loss of self-care skills and ability to regulate emotions.

Persistent difficulties with daily living skills.

When considering whether someone has autistic burnout, it is important to review the similarities and differences between autistic burnout and depression. In comparison to the signs of depression, in autistic burnout there is increased sensory sensitivity and the need to isolate in order to recover. The current clinical and experiential wisdom is that autistic burnout is a cause of depression, and that the depression is likely to reduce if measures are taken to resolve the causes of autistic burnout.

Causes of autistic burnout

The causes are due to:

A lack of autism awareness and accommodations at school, work, within the family, government agencies and society.

Feelings of being judged negatively and rejected.

Being perceived as defective.

Lack of progress academically or at work.

More demands at school, work or home than coping abilities.

Lack of connection and relationships with others.

Diminishing mental energy and increasing stress and self-doubt.

Camouflaging autism and/or mental health issues.

Autistic burnouts can last months or years and may start in the adolescent years. A burnout may be triggered by life changes such as leaving high school, starting a new job or promotion or the end of a friendship or relationship. The experience of burnout may precede and precipitate a diagnosis of autism, and confirmation of the diagnosis may lead to the recognition of autistic burnout.

A burnout is more likely for autistic adults who camouflage and suppress their autism. They do not communicate their true support needs and level of exhaustion and valiantly try to cope at school or work. However, the cost of peer acceptance is in terms of emotional energy depletion that contributes to a burnout. Camouflaging becomes a barrier to support and relief and increases stress.

Ending an autistic burnout and recovery

The first stage is recognising being in a state of burnout. It is a process that requires self-awareness and being prepared and able to disclose the fatigue, stress, and despair. Those who know the autistic person well may perceive the signs of burnout before the autistic person does themselves. This can be due to problems with interoception (perceiving internal mental states) and denial.

There may need to be guidance and support in becoming a self-advocate and explaining to those at school or work, the daily challenges experienced by an autistic person and the accommodations and adjustments needed to reduce stress and recover from autistic burnout.

Empathy and practical suggestions may be obtained from the autistic online community, sharing experiences and strategies to end a burnout.  The greatest expertise is with those who have themselves experienced autistic burnout.

The autistic person’s current expectations, lifestyle and supportive environment need to be reviewed with a stress assessment to determine which aspects of the person’s life can be ‘pruned’ to help restore energy levels. This may include changing employer, career, and lifestyle. A psychologist or life coach can help determine what depletes and what restores energy levels. Energy restoration can be achieved by activities such as being in nature, acquiring knowledge regarding a special interest, part time work and a social network that embraces autism and does not accept camouflaging the real self. There also needs to be encouragement to be the authentic self and explain rather than inhibit autistic characteristics.

As clinicians, we have a few words of caution regarding the value and effectiveness of cognitive behaviour therapy (CBT) and behavioural activation as automatic therapy for an autistic burnout and associated depression. The genuine need for withdrawal and downtime (avoidance) for recovery may be contrary to the central themes of CBT and the characteristic of reduced cognitive capacity may inhibit the effectiveness of a cognitive based therapy.

Maja Toudal, an autistic psychologist in Copenhagen and Tony are writing a book on Energy Accounting as a means of stress reduction and prevention of the experience of burnout. We anticipate the book will be published by Jessica Kingsley Publishers towards the end of 2022. We include a description of Energy Accounting in our forthcoming webinars Autistic Girls & Women on the 25th March (LINK) and Emotion Management for Autistic Children and Adolescents on the 22nd of April. [link] which will include sections on managing a meltdown, shut down and recovering from burnout.

Summary

We are increasingly recognising the causes, signs, and effects of an autistic burnout. We need to share personal experiences and clinical wisdom to ensure burnouts are recognised and strategies developed for recovery and prevention.

References

Higgins et al (2021) autism 25 2356-2369

Mantzalas et al (2021) Autism in Adulthood (published online)

Raymaker et al (2020) Autism in Adulthood 2 132-143