Just about every autistic person that I have come in contact with has experience one type of trauma or another. This cannot be by coincidence. Upon further research, there have been numerous studies about this very idea.
Mental Health and the Autistic Community
We know that about 70 percent of kids with autism will have a comorbid psychiatric disorder.
Conner Kerns, assistant professor of psychology at the University of British Columbia, Vancouver Canada
Depression, anxiety and obsessive compulsive disorder (OCD) are very well known to be common among the autistic community. PTSD has been severely overlooked. There have only been a handful of studies done on the subject. It is estimated that less than 3 percent of autistic people have PTSD. This is about the same rate as typical children but this is very under studied and it needs to be studied more.
Being autistic can sometimes mean going through a long series of traumatic events. For many of us, this could lead to Post Traumatic Stress Disorder. Post traumatic stress disorder (PTSD) is very prevalent in the autistic community. Autism and PTSD share many traits as well. PTSD in the autistic community is often severe and persistent.
One reason for this is that PTSD could look different in autistic people than typical people. This would make sense because autistic people are neurologically different than allistic (non autistic) people.
Studying PTSD in autistic people does the autistic community a disservice. Autistic people are not broken neurotypical people.
It seems possible to me that is not that PTSD is less common but potentially that we’re not measuring it well, or the way traumatic stress expresses itself in people on the spectrum is different. It seemed we were ignoring a huge part of the picture.
Kerns
Kerns, along with other researchers, are trying to understand the intersection of PTSD and autism a little bit better. They hope will inform and shape treatment for PTSD in autistic people. The more they investigate , the more the researchers are finding out that many autistic people may have PTSD.
We’re all just trying to put together the pieces and recognize that it’s an important area that requires further study. it’s been a call to arms for the field to start looking into this.
Kerns
For the typical population, PTSD is well defined. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM V), PTSD is normally develops after someone sees or experiences a terrifying to life threatening event. After this initial event, any reminder of it can trigger panic, extreme startle reflexes and flashbacks.
Aside from that, there is a large variety in how PTSD presents itself. It can lead to :
- hypervigilance and anger
- reoccurring nightmares and other sleep issues
- depression
- persistent fear
- aggitation
- irritiablity
- difficulty concentrating
- difficulty with memory
Autistic People Are More Likely To Experience Traumatic Events
Trauma, adverse events and consequences are often overlooked when the person experiencing these things are autistic. This does not make sense when autistic people are at an increased risk of experiencing traumatic events. This leads to under diagnosis and under treatment of trauma related signs. In a population based study, it was found that autistic children often experience things that affect mental and physical health.
Examples of these are:
- higher exposure to neighborhood violence
- parental divorce
- traumatic loss
- poverty
- mental illness
- Addiction
These are examples of what is called adverse childhood experiences. The likeliness of reporting with one or more of them is higher in autistic children than non autistic children.
This difference is felt more in lower income families. Autistic adults are exposed to a greater number of adverse events compared with non autistic adults. This has often been described as a vulnerability to negative life experiences. This suggests to be an important factor in the development in comorbid mental health conditions like anxiety and depression.
Common adverse events with major impact are loss of study or work and bullying. There is a large mismatch of needs of the autistic person with supports available. The stress of living up the the expectation of the family and treatment providers puts an immense amount of pressure on the autistic person. When someone is diagnosed later in life, they are more likely to experience this mismatch than someone who was diagnosed as a child.
There is a BUT.
Exposure to these events do not guarantee PTSD. PTSD has also been in association with other mental health conditions. The most common are anxiety and depression.
Anxiety and mood changes were found in 50-70% of autistics. There was a study that showed almost 90% of young autistic people and clinical level mood signs reported at least one traumatic event compared to 40% without mood signs.
The adverse events partly explained that higher rate of anxiety and depression and lower life satisfaction in autistic adults compared to non autistic adults. There seems to be a strong association between exposure to adverse events and trauma with the presence of anxiety and depression.
A large portion of people who experience trauam develop signs leading to PTSD. In autistic children and adolescents, PTSD occurs at a similar rate as the rest of the population. Autistic adults are four times more likely to be diagnosed with PTSD than non autistic adults.
Some adverse events do not meet the criteria for trauma according to the DSM 5. An example of this is bullying. This needs to be updated. People who report experiences of bullying are not formally diagnosed with PTSD. Because of this, they do not get treatment for trauma.
People who are not autistic view these events just as unpleasant. And may not be experienced as traumatic like it would be an autistic person. Just like traumatic events in non autistic people may not be traumatic to autistic people.
Autistics do not always recognize when a situation is unsafe and are less likely to share their experiences spontaneously with other people. This increases the risk for underdiagnosis and under treatment of traumatic symptoms in autistic people.
This is called diagnostic overshadowing. Traits associated with autism may be stress reactions to traumatic and other adverse events. An example of this is hyperarousal overlaps with autism related sensory sensitivity. Feelings of detachment from others can overlap an autistic trait in social emotional reciprocity. Failure to recognize emotions overlap in autism and PTSD. Trauma, adverse events, stressful events and trauma related symptoms may be overlooked or overshadowed by other conditions.
Even if the impact of traumatic events is recognize, there is still a risk of under treatment due to availability of providers and those who understand autism. If the trauma is recognized as an adult there is often serious additional issues. Trauma treatment is more difficult or is not seen as possible. This is a never ending cycle.
The Intersection of Autism and PTSD
If you do the math, according to the PTSD criteria in the DSM-5, you can have 636,000 different combinations of symptoms that describe PTSD. You have a lot of reason to think their version of PTSD might be very different.
Danny Horesh, head of Trauma and Stress Research Lab at Bar-Ilan University in Ramat Gan, Israel
There are preliminary studies that are starting to confirm this idea and there are findings that show that trauma can be very different in autistic people than allistic people. Horesh teamed up with Ofer Golan, an autism expert at Bar-Ilan and other researchers and started studying where PTSD and autism intersect.
They have recruited 130 participants. These participants include students, and some people with a diagnosis. The researchers tried to determine “where on the spectrum” they fall and if there are any traditional signs of PTSD.
34 of the participants were autistic, no intellectual disability and 66 neurotypical people. They completed questionnaires assessing post traumatic stress disorder symptoms and rumination.
The results showed increased post traumatic stress disorder symptoms in the autistic participants compared to the neurotypical participants. Brooding rumination was also higher for the autistic participants. Brooding rumination is getting stuck on the same negative emotions repeatedly, as if in a loop.
Treatment for Trauma in Autistic People
Before treating an autistic person for trauma, providers are taught to constantly get a history of the trauma and trauma related symptoms at the diagnostic stage. This is because if something is not asked, it may not get answered. A guideline called the Diagnostic Interview Trauma and Stressors for Individuals with Mild Intellectual Impairment (DOTS-LVB). This is because of the concrete, visualized and structured away potentially traumatic events and traumatic symptoms are questioned.
Once severe symptoms such as emotional regulation or self injuring, it is important to teach regulation and coping skills during and before treatment.
Not very much is known about the effectiveness of treating trauma in the autistic person. This might be because of the problem of being overlooked and overshadowed. This is also because autistic people are often excluded Freon participation in research.
Trauma Treatment Methods in Autistic people without ID
Eye Movement Desensitization and Reprocessing
Eye Movement Desensitiation and Reprocessing (EDMR) therapy is an individual therapy originally designed to lessen the negative feelings associated with traumatic memories.
It was developed by Francine Shapiro in the 1980’s as a therapy for PTSD. Shapiro said that all human beings have the capacity to heal naturally, physically and psychologically. This was conceptualized as an adaptive information model (AIP). If adverse events happen and people cannot heal naturally, EDMR can facilitate the process.
The theory behind this therapy is that adverse experiences are stored unprocessed in teh brain in a sensory form (with images, thoughts, physical sensations and/or emotions). This affects the person in the present day. This affects them physically, emotionally and behaviorally.
During the EDMR session, the patient attends to emotionally disturbing material in brief sequencial doses while focusing on external stimuli at the same time. Distracting stimuli can vary from the most common used lateral eye movements to a variety of other stimuli. These stimuli could be audio stimulation, hand tapping and making calculations. It is suggested that EDMR therapy facilitates the access to the traumatic memory network so the information processing is enchanted while new associations are meshed between the memory and non traumatic memory. The internal and external triggers are desensitized and the trauma related symptoms improve.
Pairing the memory with a sensory stimuli enables the memory to be processed and relieving the influence and impact on daily life and functioning.
The findings of studies on the use of this on autistic people is only evident in a few studies. EDMR therapy for PTSD in autistic people and autistic/ intellectually disabled people are evident in a few case studies. Controlled studies of this therapy in these populations is desperately needed.
EDMR may be a good fit for autistic people because:
- it is client led, adapting well to different levels of cognitive ability
- memories do not need to be put into words, making it relevant for people who communicate differently
- with experienced therapists, EDMR can be flexible and responsive to people with a varying differences
- It can be facilitated by visualization, emotional experience, somatic sensation or thought
- it can be used for processing upsetting situations in the present or anticipated situations that are associated with distress, anger, confusion or fear
Only five studies have been investigated for autistic people.
- case study was with a 21 year old autistic woman who was receiving EDMR for PTSD
- three case series describing EDMR for PTSD for up to six autistic people with ID (this is counted as 3 separate studies)
- One randomized controlled trial of EDMR for 21 autistic adults (no ID) either presenting PTSD symptoms or diagnosed with PTSD
Each study, besides the controlled trial, offered three sessions a week for the first 8 weeks. The researchers provided Shapiro’s 8 phase protocol or very similar Dutch variation of this for up to 17 session. Accommodations were inserted into the EDMR to accommodate the autistic and/or intellectually disabled participants.
These accommodations were:
- spending longer to build a rapport, taking history and on the preparatory stabilization phase
- opting for alternative BLS to eye movements (hand buzzers, headphones and audio speakers)
- using the storytelling method
- using a child instead of adult treatment protocol
- reducing emphasis on identifying negative and positive cogniitions
- Therapists being more directive during processing
- writing information down
- offering options rather than open ended questions
- varying session duration
- another person being present during sessions
In all of these studies, PTSD symptoms were reported to have improved after this therapy was delivered. This was evident in a change in Subjective Units of Distress (SUDS) or Validity of Cognition (VoC) ratings or on standardized self report measures.
After these studies were published, there was a new study that surveyed EDMR therapists about treating autistic people. This study was published on January 27, 2023 in the journal Autism, published by Sage. The researchers of this study used Delphi survey methodology, which is an interactive study design useful in developing consensus in groups of people (therapists in this case) with experience and expertise under certain topics. This survey was broken up into three rounds of surveys.
These participants were recruited through clinical academic networks, special interest groups, EDMR associations and social media.
The inclusion criteria was:
- internationally based therapists working in any setting
- at least formal EDMR training
- limited through to advanced proficiency in EDMR
- working with autistic people or any age, occasional, sometimes or often
- Using English with enough fluency to participate in the survey
There were 103 participants in the first round survey. This included medical doctors, psychiatrists, chartered psychologists (clinical, counseling, occupational, forensic and educational psychologists), neuropsychologists, CBT therapists, psychotherapists (including drama, art and music), counselors, nurses, social workers and occupational therapists.
Many participants had several professional qualifications. 83 participants worked in the United Kingdom, five in Australia, four in the United States, one in Egypt, one in Greece, on in the Netherlands and one in New Zealand.
The participants worked in child and adult psychological services, community mental health services, the military, voluntary organizations and services for the intellectually disabled.
In summary, 21 statements relating to accommodations were rated as often or always being incorporated into the EDMR sessions with autistic people. Six accommodations were considered essential for EDMR clinical supervision. 57 statements were rated as sometimes being incorporated into EDMR thereapy and 3 statements about clinical supervision were considered useful. Thirty seven statement did not again consensus rating over 69%. No statements were rated “this should not be done.”
These results suggest that EDMR could be beneficial for autistic people and there is a lot of anecdotal evidence that it is used clinically, often without much guidance.
There are some therapists that describe themselves as “finding their own way” because there is lack of autism training. This study focused on the therapists perspective. It isn’t perfect but it looks promising.
Cognitive Behavior Therapy
Cognitive Behavior Therapy or CBT focuses on the relationship between thoughts, feelings and behaviors. It targets current problems and symptoms and focuses on changing patterns of behaviors, thoughts and feelings that lead to PTSD symptoms. It notes how changes in any one area can improve life quality in the other areas.
This is strongly recommended for PTSD. There are several theories securing to trauma that explain how CBT can be helpful in treating PTSD.
- Emotional processing theory suggests that those who have experienced a traumatic event can develop associations among safe reminders of the event (news stories, situations, people) meaning traumatic responses. Changes these associations that lead to this is the core of emotional processing.
- Social Cognitive theory suggests that those who try to incorporate the experience of trauma into existing beliefs about themselves, others and the world often have unhealthy understandings of their experience and perceptions of control of self or the environment.
CBT with trauma focus (CBT-T) includes all treatments aiming to help trauma related symptoms by addressing and changing the thoughts, beliefs and behavior. CBT-T includes doing homework, psycho education and doing behavioral experiments such as exposure and working on stress management. Modified versions of CBT may result in reduced trauma in autistic people.
Preliminary recommendations of adapting current trauma focused CBT for autistic patients are provided. The most important accommodations are to limit assessment and interventions relying on verbal language and abstract reasoning. Reliance on the verbal part of the report of the autistic person during exposure to a traumatic event may be challenging because of different verbal ability in different situations. Providing a concrete description can be helpful and combing oral speech with visual representations.
Dialectiacal Behavior Therapy
One type of treatment is Dialectiacal Behavior Therapy (DBT). DBT is a type of talk therapy that is based on cognitive behavior therapy. It’s adapted for people who intensely experience emotions. DBT focuses on helping people accept the reality of their lives and change harmful behavior and allows for unconditional autonomy of the person receiving therapy. This type of therapy was developed in the 1870’s by Marsh Linehan, an American Psychologist.
DBT is used for:
- Borderline Personality Disorder
- Self Harm
- suicidal behavior
- PTSD
- addiction
- eating disorders
- depression
- anxiety
It’s important to remember that DBT is effective for these conditions because that these are thought to be associated with issues that result from unsuccessful attempts to control intense negative emotions. Instead of depending on the unhelpful coping mechanisms, DBT teaches people a healthier way to cope.
Treatment of Trauma with Intellectual Disabilities
The diagnostic tools of trauma for intellectually disabled people are limited . They primarily rely on caregiver and family member reporting or self report. Many people who are intellectually disabled are unable to self report.
The available evaluation tools exclude people who are intellectually disabled, as participants, or only included people who are “mildly” intellectually disabled in studies demonstrating their reliability to self report.
Assessing stress disorders in intellectually disabled people is difficult because of diagnostic overshadowing. Autistic people who are not intellectually disabled have overshadowing, imagine how much overshadowing autistics with intellectual disability experience.
Specifically for people who are intellectually disabled, they are often misdiagnosed with psychotic disorders or bipolar disorders. This is due to the reliance on self reporting to assess PTSD. Evidence based tools for people who are moderately or severely intellectually disabled do not exist.
To this day, there are only a handful of studies that have tried to use trauma treatments that have been used with the non ID population with intellectually disabled people.
The big problem is that insurance mandates coverage of ABA and the Indivduals with Disabilities Education Act (IDEA) have greatly increased access to ABA for children who are autistic and have intellectually disabled people.
Researchers are starting to research treatment of PTSD with CBT. I did not have access to the full text version of this study but it involved a young man who is both autistic and has intellectual disability that was treated with 12 sessions of CBT. The result of this study was that there was an overall reduction in trauma symptoms and he self reported an improved mood. The researchers carefully questioned the participant in this case study. They adapted the language and concepts they were questioning him about and he was able to fully participate in the therapy. This case study suggests that this therapy is a good alternative to ABA. Since ABA is a source of a lot of trauma, all by itself.
Therapists Understand of Autism and Trauma
This is one concern among the autistic community. If an autistic person goes to seek help for trauma, will the professional understand how trauma affects the autistic person?
When researching research studies, only one was found. There was a study investigated at the University of Denver in 2023. This study was called A Qualitative Analysis of Treatment Providers’ Understanding and Assessment of Trauma and Autism.
This was a qualitative study, meaning that the questions were open ended questions providers needed to answer. Quantitative is used to generate a statistic.
This study was investigated because post traumatic stress is often left untreated in the autistic community. This is mostly due to caregivers and providers’ lack of understanding of the way trauma presents in autistic people. Understanding traumatic events in autistic people is important in comprehensive assessment and treatment. Untreated trauma in the autistic community had led to a health crisis. This is one of the causes of death by suicide.
The study that sparked this one was a pilot study that contributed to staff training, they did not analyze the data. This is the significant limitation in that study. This was a starting point for future studies.
This study takes the pilot study further and analyzes the data.
In the pilot study, the participants were treatment providers that worked for Childserve, a healthcare facility for children and families who had children with neurodevelopment disabilities. There were a total of 56 participants that responded to the surveys. They were a survey with 7 open ended questions.
The participants were:
- 15 speech therapists
- 10 occupational therapists
- 11 childcare providers
- 5 mental health therpaists
- one respite provider
- 4 case managers
- 7 ABA therapists
- 3 physical therapists
The researchers took the responses to the first three questions and broke them down into themes.
Question 1 How do you assess your clients for trauma?
The themes from this question were:
- Interview
- Observation
- Assessment Protocols
- Consultation
- No assessment
The majority of these providers did assess trauma but some did not even consider it. The study does not say which providers answered like this but I guess its the ABA providers.
Question 2. How do you define Trauma?
There were 7 themes from this question but divided into three categories
- Emotional stress
- outcome
- subjectivity
Question 3. What would you like to learn, if anything, regarding trauma and the neurodiverse population?
There were a total of 9 themes but they got divided into three categories:
- assessment skills
- treatment skills
- information about trauma
The researchers found that children who self report were more accurate than parents who report for their children. Parents under report symptoms due to not understanding what they are seeing. This is also because parents are often involved in the child’s trauma. The providers in this study sample rely on parent reporting.
Providers also most often identify trauma through observation based on behavior during sessions and appearance that would indicate abuse. Trauma is more complicated than that.
62% of these providers defined emotional stress as trauma. There is a clinical understanding that emotional stress does not always equal trauma. These providers missed the mark. Autistic people, especially children, have a hard time describing their own experience to others. This also exposed gaps in provider knowledge.
Most of the providers that participated wanted more information on trauma. In a population that is more susceptible to trauma, providers do not have a working knowledge of the subject and that is quite scary.
They wonder why autistics often do not seek help. Traumatic stress often goes unrecognized and untreated in autistic people. Many autistic patients do not receive adequate care and relief because health symptoms are written off as autistic traits. This has contributed to the growing mental health crisis. This research has highlighted the reason autistics do not seek help. The overshadowing is a major issue and it needs to be fixed. There needs to be future quantitative studies on this subject so our community can be properly helped.
Sources:
https://www.ncbi.nlm.nih.gov/books/NBK573608/
https://my.clevelandclinic.org/health/treatments/22838-dialectical-behavior-therapy-dbt
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10050265/
https://onlinelibrary.wiley.com/doi/10.1111/jar.12243
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9806468/
https://www.apa.org/ptsd-guideline/treatments/cognitive-behavioral-therapy
Aviva Seigler 