April can be a painful and tricky month for Autistic people and their loved ones. Why? Because it is :insert trumpet flare: Autism Awareness Month. Those of you that are new to the Autism community may find that strange. Even as an Autistic person myself, I found this odd at first. The truth is, there can be trauma around this idea of Autism awareness. There are many awareness months that people appreciate and love, so why is this one so complicated?
To understand, let’s dig into Autism history. Autism like most neurological differences was first defined by people who are not in fact Autistic. This led to many misunderstandings as to what Autism truly is. Autism advocacy was done by parents, professionals and loved ones that also did not understand. When you don’t understand it is hard to advocate effectively. Early Autism research and advocacy focused on curing and preventing Autistic people. Out of these efforts Autism Awareness Month was born.
It’s important to note that not all Autistic people feel the same about this topic. While some Autistic people want a cure or to prevent Autism, the vast majority do not. You may have notice I am using what is called Identity First Language by referring to Autistic people instead of using Person First Language and referring to people with Autism. This is another area where there are discrepancies. Some prefer Person First Language while the majority of Autistic people Prefer Identity First Language. Why does this matter and how does it relate to Autism Awareness? It matters because we see Autism as an intrinsic part of who we are, not something we carry or deal with. We don’t know who we are without it because it is a major piece of our identity. Furthermore, many of us actually like who we are.
For these reasons and more, Autism Awareness Month can feel like a bombardment of reminders that people don’t really want us as we are. Please don’t misunderstand we have many challenges because we are Autistic and those can be painful and hard for us and our loved ones. We also have strengths that we would hate to lose. Research has shown that many of us can thrive if we have accommodations that allow us to be ourselves rather than try to change our innate neurology to fit into societal norms. While these accommodations are important for inclusion and provide us equitable access it doesn’t remove the challenges we have. Those challenges will still be with us. But what it does provide is acceptance. Acceptance is greater than awareness and the driving force behind changing Autism Awareness Month to Autism Acceptance Month.
Autistic led organizations like ASAN, AWN, Neuroclastic, Thinking person’s guide to Autism, Aucademy; like to say nothing for us without us. One of the challenges in disability advocacy in general and Autism advocacy specifically is too often it is dominated by people that are not in the community. This does not mean we don’t want loved ones and professionals advocating. Instead, we ask they listen to those that live it from the inside. We want to be accepted as people worth accommodating rather than problems to be fixed.
Autistic people are a diverse group. The spectrum is not a straight line but rather a wheel with many spikes that are each a mini spectrum. Learn more about the spectrum, here. If you have met an Autistic person, you have met one Autistic person. We are each our own person, just like everyone else.
If you are looking to further Autism Acceptance, the organizations mentioned above are great resources. And as always, check out our Meme page.
I am especially passionate about supporting neurodivergent people particularly those that are Autistic, ADHD, and OCD. I also love assisting those that have chronic pain and illness. Finally. I love drawing on mindfulness, trauma informed person centered and DBT strategies to help client’s learn how to cope with a world that is often challenging and even traumatic.
Sleep is a major issue for many adults and children who have been diagnosed with autism spectrum disorder (ASD). Recent studies suggest that up to 80% of young people with ASD also have difficulty falling and/or staying asleep at night. The incidence rate of sleep problems and disorders is also high among adults with ASD, particularly those who are classified as ‘low-functioning’. Lack of sleep can exacerbate some of the behavioral characteristics of ASD, such as hyperactivity, aggression, and lack of concentration. As a result, people with ASD who have a hard time sleeping may struggle at work or in their classroom.
We’ll look at some of the most common sleep issues among adults and children with ASD, as well as some suitable treatment options and tips for managing ASD and sleep on a regular basis. First, let’s look at how the medical and psychiatric communities currently define ASD.
What Is Autism Spectrum Disorder?
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is considered the most authoritative guide for evaluating and diagnosing mental health disorders in the United States. According to the latest definition (last revised in 2013), the diagnostic criteria for autism spectrum disorder (ASD) are as follows:
The latest DSM revisions also note three distinct ‘severity levels’ that can be used to assess how much support (if any) a person with ASD requires on a regular basis.
Prior to 2013, ASD was broken down into different autism subtypes based on severity of symptoms. These subtypes were eliminated and omitted from the DSM-5, and their diagnoses have all been absorbed into the ‘ASD’ definition. Although these subtypes are no longer officially diagnosed, they are still widely discussed within the medical and psychiatric communities. Additionally, some are still included on other authoritative lists, such as the International Statistical Classification of Diseases and Related Health Problems (ICD) database maintained by the World Health Organization (WHO). The four most common subdivisions of ASD (as previously defined by the DSM) are:
The root cause of ASD remains unknown, though most researchers today believe that both genetic and environmental factors play a major role. Recent studies have pinpointed some genes that are prevalent in people with the disorder, and brain-imaging tests indicate that the brains of people with ASD develop differently than the brains of other individuals. The general consensus is that ASD originates from defects in the brain that affect how the brain grows and communicates with other areas of the body. Studies have yet to identify any specific environmental factors that directly cause or influence the development of ASD. However, the scientific community has debunked and rejectedthe longstanding belief among parents that child vaccinations lead to a higher incidence rate of ASD in developing children.
Diagnosing ASD in Children
Most children with ASD begin to display symptoms by age three, so early detection and evaluation is critical. The ASD diagnosis process for children is divided into two stages: developmental screening and comprehensive diagnostic evaluation.
Parents are urged to begin developmental screening at a young age to evaluate their children for ASD and other intellectual disabilities. The Centers for Disease Control (CDC) recommends ASD screenings for all children at the ages of nine, 18, and 24-30 months, adding that a reliable ASD diagnosis can usually be made by age two. Additional testing may be required for children who are considered high-risk for ASD, including those with family members who have already been diagnosed or those who have displayed ASD-related behaviors.
During the developmental screening stage, doctors watch for signs and symptoms of ASD diagnostic criteria. These include deficits in communication and social interaction, restricted interests, and repetitive behaviors. Speech and language skills are often delayed in children with ASD; they typically will not respond to their own name after 12 months. Other ‘red flags’ include refusal to acknowledge or point at moving objects after 14 months, showing little interest in playing ‘pretend’ games after 18 months, and sustained repetition of words and phrases, as well as physical signs like avoiding eye contact, constantly rocking back and forth, compulsory hand waving, and/or exhibiting ‘unusual’ reactions to sensory stimuli. Additionally, children with ASD often display at least one of the following traits or behaviors:
According to the CDC, the most commonly used developmental screening tools include the following:
If developmental screening yields results that are consistent with ASD symptoms, then a comprehensive diagnostic evaluation may be recommended. Family participation during this second phase is vital. Parents can describe symptoms and behaviors to the evaluation provider, who can then take these statements into account when conducting the diagnosis. The presence of at least one parent can ease the evaluation process for the child, as well.
In order to perform an accurate evaluation of ASD in children, doctors rely on a set of diagnostic tools. The CDC notes that a comprehensive ASD evaluation should include at least two diagnostic tools; the following four diagnostic tools are most widely used:
Once the comprehensive diagnostic evaluation is complete, parents can discuss the outcome with their physician and — if the child receives an ASD diagnosis — explore possible treatment options.
Considerations for Diagnosing ASD in AdultsASD is a lifelong condition. People with ASD typically begin to show symptoms of the disorder during their early childhood. In some cases, however, these symptoms will not become apparent until the individual has reached adulthood.
Due to the wide range of symptoms and severity levels, diagnosing ASD in adults can be a tricky process — particularly for those who have not received an ASD diagnosis as children. According to neurologist David Beversdorf of the Autism Speaks Autism Treatment Network, an adult seeking an ASD evaluation should first discuss the matter with his or her physician. During this consultation, the patient should explain why they are seeking an ASD diagnosis. These reasons may include changes in the way he or she behaves or interacts with others, as well as heightened sensitivity to sensory factors, acquired repetitive behaviors, or newly restricted interests.
Most licensed physicians are not trained to diagnose ASD themselves, but they will be able to steer the patient in the right direction — and, in some cases, refer them to a specialist with a background in ASD diagnosis. Due to a widespread scarcity of clinicians that specialize in ASD, Dr. Beversdorf suggests meeting with a medical professional that evaluates and treats young people for the disorders. These include developmental pediatricians, child psychiatrists, and pediatric neurologists.
One major issue for diagnosing adults with ASD has been a lack of reputable screening and diagnostic evaluation tools. With the exception of the Gilliam Autism Rating Scale — which evaluates subjects up to 22 years of age — these tools are designed for child subjects, not adults, who tend to be less honest and more secretive when undergoing these tests. Deceased parents are another obstacle for diagnosing adults, since mothers and fathers provide key information to clinicians during the early screening and evaluation stages of child ASD testing.
The Adult Repetitive Behaviours Questionnaire-2 (RBQ-2A) appears to be a step in the right direction. Introduced by the Journal of Autism and Developmental Disorders in 2015, the ADBQ-2A is designed to evaluate adults based on repetitive behaviors and restricted interests. Because the questionnaire excludes social communication and interaction, it should not be seen as a definitive evaluation tool for ASD in adults. However, RBQ-2A can be used to help adults decide whether their behaviors and interests are indicative of a disorder that may necessitate formal treatment.
How Does ASD Affect Sleep?
A 2009 study published in Sleep Medicine Reviews noted parents report sleep problems for children with ASD at a rate of 50% to 80%; by comparison, this rate fell between 9% and 50% for children that had not been diagnosed with ASD. The rate for children with ASD was also higher than the rate for children with non-ASD developmental disabilities.
In a recent study titled ‘Sleep Problems and Autism’, UK-based advocacy group Research Autism noted that the following sleep issues are common among children and adults with ASD.
People with ASD often struggle with daily pressures and interactions more than individuals who do not live with the disorder. Lack of sleep can greatly exacerbate the feelings of distress and anxiety that they experience on a frequent basis. As a result, may people with ASD who have trouble sleeping may struggle greatly with employment, education, and social interaction — all of which can impact their outlook on life.
Persistent sleep problems in people with ASD may indicate a sleep disorder. Insomnia is the most commonly reported sleep disorder among adults and children with ASD. Insomnia is defined as difficulty falling and/or remaining asleep on a nightly or semi-nightly basis for a period of more than one month. A study published in Sleep found that 66% of children with ASD reported insomnia symptoms. A similar study from 2003 found that 75% to 90% of adults then-diagnosed with Asperger syndrome reported insomnia symptoms in questionnaires or sleep diaries.
In addition, parasomnias such as frequent nightmares, night terrors, and enuresis (bedwetting) have been widely reported among children with ASD, particularly those once diagnosed with Asperger syndrome. The child’s inability to express their fears and discomforts upon waking — often due to ASD — can complicate the way parasomnias are addressed and treated. Additionally, children with ASD often wake up in the middle of the night and engage in ‘time-inappropriate’ activities like playing with toys or reading aloud.
Sleep researchers are currently studying the relationships between other sleep disorders and ASD. For example, Dr. Steven Park recently noted a possible connection between ASD and obstructive sleep apnea (OSA), a condition characterized by temporary loss of breath during sleep resulting from blockage in the primary airway that restricts breathing. Dr. Park’s theory suggests that the intracranial hypertension found in many babies and infants with ASD may also cause the child’s jaw to take on an irregular shape, which can lead to sleep-disordered breathing as well. Other studies have explored the link between ASD and disorders like narcolepsy and REM Behavior Disorder. However, insomnia and parasomnias remain the most common sleep disorders among adults and children with ASD.
Next let’s look at treatment options and considerations for adults and children with ASD who are experiencing a sleep disorder.
Sleep Therapy Options
If the preliminary assessment indicates the presence of a sleep disorder in a child with ASD, then treatment will likely be the next step. Cognitive behavioral therapy (CBT) has proven fairly effective in alleviating sleep disorder symptoms for young people with ASD. CBT is designed to improve sleep hygiene in patients by educating them about the science sleep and helping them find ways to improve their nightly habits. A study published in the Journal of Pediatric Neuroscience noted that children with ASD are often set in their routines, so establishing a consistent bedtime schedule can be quite beneficial to them. A healthy bedtime schedule might consist of the following:
Additional behavioral interventions may help children with ASD improve their difficulties with sleep. According to a ‘Sleep Tool Kit‘ published by the Autism Treatment Network, these interventions include the following:
In addition to CBT, light therapy (also known as phototherapy) may also help children with ASD sleep better. This form of therapy is usually conducted using a light-transmitting box kept near the child’s bed. By exposing the child to bright light early in the morning, this therapy can help boost melatonin production and make children feel more alert throughout the day.