By Dr Michelle Garnett and Professor Tony Attwood
Consider the following stories which are based on true cases from our clinical practice, with identifying details changed:
The parents of Molly, who is 13 years-old and autistic, presents at the clinic, reeling from consecutive diagnoses of autism, anxiety, and eating disorder in the past year, wondering where their once social, exuberant, and happy daughter has gone and desperate to get her back again.
Henry, an autistic 15-year-old boy, is stuck in his bedroom, seemingly addicted to Internet gaming, his personal hygiene is now non-existent, and he is unresponsive to all attempts to assist him to get his life back on track.
Theo, a once happy and thriving child, now at 14-years-old is only attending school sporadically, his grades have decreased, he is struggling with friendship, and even interests that were very pleasurable for him, no longer seem to hold any power to cheer him up.
Georgia, an 11-year-old girl suddenly announces that she is male, wants to change her name, start sex change hormones, dress as a boy and insists on everyone using male pronouns. Her stance is rigid, any arguments to the contrary are heresy, and she threatens suicide when her demands are not complied with.
For each Molly, Henry, Theo and Georgia the common theme is the timing of the unfolding disaster. Puberty arrives and the problems of primary school seem relatively benign and navigable.
In our clinical experience we are happily aware that these extreme scenarios are not the case for every autistic teenager and about a third navigate the teenage years with relatively few issues, a third have some difficulty but get back on track fairly quickly, and for the remaining third the problems are more severe and can take many years to resolve. Thus, for many autistic teenagers, and therefore for their families, adolescence represents a significant challenge requiring specific knowledge and skill to navigate what is going on.
What is going on?
We are often asked by parents: “What is happening? Why is my autistic teenager struggling so much?” It is a good question and deserves a thorough answer. Firstly, it is important to know that the change is not due to bad parenting. Many parents scan the history of their child, deeply ponder any time they did not meet their own ideals or expectations in their parenting and can start to wonder how they “caused’ the problems their teenager is facing. As one parent said to another at the joyous time of her first child’s birth, “Parenthood, welcome to the world of guilt and anxiety.”
As parents we can be influential in our children’s lives, but there are many factors that are beyond our control. When an autistic teenager “goes off the rails” the reasons for the ‘derailment’ are usually complex and multifactorial. In essence, there is a combination of hormonal, neurological and environmental factors that converge to create “the perfect storm.” In this article, we discuss each of these factors, aware that understanding what is happening can be extremely helpful in both coping with and managing the problems of autistic adolescence.
Hormonal change – HPA
Both the hypothalamic-pituitary-adrenal (HPA) and the autonomic nervous system (ANS) are the stress-system-related neuroendocrine (hormonal) pathways. Abundant research shows that both the HPA and the ANS may be functioning in an atypical way for an autistic teenager. (Makris et al, 2022).
Alterations in the stress system occur when that system is activated for prolonged periods of time. For example, a system imbalance or dysregulation is likely to occur when an autistic child or teenager is exposed to sensory triggers for long periods, to aversive social stimuli, such as peer rejection and bullying, to perceived threatening situations, or to novel situations. During times of chronic stress, there is increased production of corticotropin-releasing hormone (CRH), cortisol and catecholamines, which can result in both physical health conditions, e.g. insomnia, chronic stress conditions (Agorastos et al, 2018), activation of auto-immune system disorders, and mental health conditions, such as post-traumatic-stress disorder (PTSD), depression, panic disorder and obsessive compulsive disorder.
A recent study compared autistic teenagers (13-17 years old) with younger autistic children (7-12 years old) and found that the older children had far higher cortisol levels in the evening, indicating a cumulative effect of stress throughout the day which would negatively impact sleep (Muscatello & Corbett, 2018). A very consistent finding across several studies has been much greater variability of cortisol production across the course of day for autistic adolescents compared to typically developing adolescents (Corbett et al, 2009). Other studies indicated that the HPA-axis of autistic children may be disturbed to the extent that it was non-regulating, allowing levels of cortisol production to remain high (Jensen et al, 1985).
Schupp and colleagues (2013) found that autistic children more than typically developing children showed enhanced HPA responsivity (high secretion of stress hormones) during what were described as “relatively benign” social interactions. Stress levels during social interaction tend to increase with age in autism. For example, Corbett and colleagues (2021) found that cortisol levels during social interactions were significantly higher for autistic adolescents compared to autistic children.
Hormonal change – ANS
In a well-functioning autonomic nervous system (ANS), two systems, the sympathetic nervous system (SNS) and the parasympathetic nervous system (PNS) are in regular efficient communication with each other to keep managing any perceived threats with no undue stress or alarm. When the SNS is triggered due to a perceived threat it primes for body for flight or fight, by increasing heart rate, muscle tension, galvanic skin response (sweating) etc. If there is no or a low threat the PNS is activated, as the body’s built-in self-regulatory system, to calm the nervous system down. When these systems are working well in safe environments, potential threats are perceived with accuracy and the person feels calm and well-regulated most of the time.
There is considerable research now to indicate that autistic teenagers experience both higher SNS rates, eg higher heart rate and other bodily signs of stress, both at rest and during stressful situations and lower resting PNS functioning (Neuhaus et al, 2014, 2016). This combination is indicative of a differently functioning stress system in autism, which explains higher rates of daily problems with anxiety in autistic teenagers.
Unfortunately, there are other consequences of poor PNS functioning in autism. Poor PNS functioning has been found to predict increased severity of restricted and repetitive behaviours in 5–10-year-old autistic children and poorer adaptive functioning (Condy et al, 2017). Conversely, better PNS functioning has been associated with better social communication and receptive language abilities in autistic children (Patriquin et al, 2013).
In summary, research findings on the functioning of the HPA and the ANS in autistic teenagers are converging to show that the ANS is generally hyper-aroused, the parasympathetic system under-responsive and that the two systems interact in an atypical way. Chronic ANS activation without PNS de-regulation can cause lasting change to the stress response system such that the systems continue to operate in atypical ways indefinitely.
All this and we have not even mentioned the deluge of hormones that occur in puberty, specifically gonadotropin-releasing hormone, or GnRH. These hormones trigger puberty, causing both emotional and physical changes. Puberty hormones and other factors are implicated in the emergence of many mental health issues for typically developing adolescents, including depression and anxiety disorders, and behavioural problems that involve risk-taking, for eg substance misuse and aggression (Steinberg, 2008). Unfortunately, the rate of autistic teenagers developing depression or anxiety is far higher than for neurotypical teens, with one large study reporting a prevalence of 79% of autistic adolescents suffering depression, and 54% an anxiety disorder (Mayes, et al, 2011).
We have known for a long time that the two amygdala in autistic children are both structurally and functionally different to typically developing children (eg Sparks, et al 2002, Richards, et al 2020), and that the connections between the amygdala and the prefrontal cortex are less efficient (Rudie, et al, 2012; Liu, et al 2020). The amygdala are in the mid-brain and are important for emotional processing including inhibiting and regulating emotion, the processing of memories associated with emotion and the influence of emotion in our lives generally.
The everyday effect of having differently functioning amygdala is hyper-responsiveness, that is, being very quick to perceive threat, even in safe or benign situations, and over-responsiveness to negative situations. In other words, the person is more likely to feel unsafe most of the time and to experience strong emotions. When the pathways between the frontal lobes and the amygdala are functioning less effectively, the person is less able to use “top-down regulation” of their emotions such as problem-solving, re-evaluating their response, or seeking help.
In neurotypical teenagers the brain undergoes a massive reorganisation of the underlying functional neurological networks that support the essential tasks of adolescence. Specifically, these are, forming supportive friendships, finding autonomy from parents, attracting and keeping an intimate partner, becoming independent in domestic and social roles and becoming trained for and finding a job. The primary neural networks involved are the pre-frontal cortex and frontal lobes, the limbic system and the visuoperceptual system. When this adolescent re-wiring happens successfully the teenager becomes ever more successful with emotion management, social communication, face recognition and discernment of subtle emotions, executive functioning and working memory and managing sleep. There is research to show autistic adolescents diverge from their neurotypical peers in each of these areas of brain development, with a plateauing of development, leading to worse abilities in each area (e.g. Courchesne, Webb & Schumann, 2011), making the crucial tasks of adolescence far more problematic. For example, poor executive functioning in the teen years in autism, especially the ability to self-monitor, was predictive of significant adaptive behaviour in adult years, leading to continued dependence on parents or government assistance (Pugliese, et al, 2017).
We know that autistic individuals experience higher levels of stress and anxiety when they encounter change or transitions that neurotypical people do. Seeking sameness and consistency is part of our current international definitions of autism (APA, 2022). When we examine adolescence, it is difficult to think about a period of life that involves more change. There are bodily changes, emotional changes, changes in expectations of behaviour, a change to high school and massive changes to the experience of school. Friendship changes, with greater demand for skill in both forming and maintaining friendship to be successful.
As the autistic teenager is confronted with each of these changes, research and clinical experience show they are struggling. School staff often do not understand their social approach or way of learning and can misinterpret the student as being lazy, noncompliant or being deliberately frustrating, leading to more adverse social interactions, and sometimes to detentions, suspensions and expulsions. Peers often do not understand the autistic student and difficulties forming friendships are a common outcome, resulting in high rates of peer bullying and rejection (Little, 2002). Many autistic students are driven to use camouflaging to mask their autism, which is exhausting, denies the authentic self, and leads to clinical levels of depression and anxiety (Cassidy et al, 2018, 2020).
So why is my autistic teenager struggling so much?
Essentially, an autistic person’s neurology is different in childhood, leading to strengths, but also to signature difficulties of autism, including social communication difficulties, a different sensory system, rigid thinking at times and seeking sameness, or difficulties with change and uncertainty. Due to these differences, it is highly likely that by the time the autistic child reaches their teenage years their stress-system-related neuroendocrine (hormonal) systems (ANS and HPA) are likely to be working in atypical ways which means that your autistic teenager is less equipped to deal with stress and anxiety than you would expect for their age.
Next, puberty hits. Essentially a deluge of hormones that cause both high levels of anxiety and stress, and bodily changes. At the same time, your teenager starts high school (leading to more changes, eg a different teacher, subject and booksevery hour), friendship, which is already experienced as being both difficult and stressful, becomes both more desirable and exponentially more difficult and your teenager may experience peer bullying and/or rejection, which can be traumatising. Because your child is now a teenager, you may have more expectations around sleep, chore, behaviour, and emotion management. The typical re-wiring of the parts of the brain that would help your autistic teenager navigate being social and organised and able to manage emotions does not occur, such that their capacity to do all three remains child-like.
In fact, the impact of adolescence on autistic individuals can be so severe, it has been proposed by one group of researchers (Picci & Scherf, 2015) to be the “second hit” of autism, in their “Two Hit Model of Autism.” In their model, the “first hit” sets up a neural system that is ill-equipped to manage the social and other demands of adolescence. When the “second hit” occurs the neural, endocrinological and social impact is so great that it impacts on that individual’s capacity to transition successfully to adulthood, particularly to gain independence, employment and develop supportive adult relationships.
Whilst the “Two Hit Model” was formulated to explain the more severe outcomes that can occur for autistic teenagers, perhaps a third as previously stated, it is clear that the findings upon which this model was formulated are relevant to all teenagers, and we think provide some helpful explanations for why your teenager may be struggling. Knowing why your teenager is struggling can be enormously helpful to inform what to do. For eg, the very first response may be compassion for the extreme difficulties faced each day with less capacity than one would expect for managing them. Indeed, understanding, support (including for parents) and accommodations are at the forefront of the best approach to autism, with skill acquisition and behavioural approaches being secondary.
Where to from here?
As clinical psychologists, we have been working with troubled autistic teenagers for a combined 80 years and have discovered some important ways to help them navigate the multiple issues of adolescence.
Our online course Succeeding with Autism in Teenagers was created for parents and carers, as well as health and educational professionals who also working with autistic teenagers.
If you are a health professional seeking continuing professional development in providing support and therapy for autistic teenagers, you may be interested in our online course Support and Therapy for Autistic Children and Adolescents.
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