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A guide for parents, professionals and people with Asperger's Syndrome or Autism Spectrum Disorder Level 1 and their partners.
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to be one of the world’s foremost experts on
Autism Spectrum Disorder.
Upcoming Events
Books by Tony Attwood
Tony has published many books about Asperger's Syndrome and Autism.
He has also co-authored and contributed to publications with other experts.
He has also co-authored and contributed to publications with other experts.
New Release Out Now
Autism Working:
A Seven-Stage Plan to Thriving at Work
By Tony Attwood and Michelle Garnett
Tony Attwood, Michelle Garnett, Julia Cook, Louise Ford, and Stefanie Runham
Attwood & Garnett Events
FOUNDED BY PROFESSOR TONY ATTWOOD & DR MICHELLE GARNETT
Dr Michelle Garnett PhD is a clinical psychologist who has specialised in autism within her own private practice for over 27 years. She has co-authored six highly regarded books on autism, five with Prof Tony Attwood. Her 2018 book with Barb Cook is a seminal work on the female presentation, Spectrum Women: Walking to the Beat of Autism. Her most recent books Having Fun with Feelings on the Autism Spectrum and Ten Steps to Reducing Your Child’s Anxiety on the Autism Spectrum provide guidance to parents of young children on the autism spectrum.
Together Tony and Michelle have created a series of online courses that are available to download. There are also webinars consisting of a series of mater classes.
Recent Articles by Tony
05 November 2023
Can Autism be confused with schizophrenia?
The term autism was first used by the Swiss psychiatrist Eugen Bleuler in 1919 to describe a withdrawal from reality with a pathological predominance of inner...
05 November 2023
Autism over the age of 50
As clinicians, we have seen an increasing number of adults, and especially women, over the age of 50 seeking confirmation of autism in their developmental history and current...
16 August 2023
Autism and Ehlers-Danlos Syndrome
Researchers and clinicians in the autism area have known about the association between hypermobility and autism for a long time, and hypermobility is one common symptom...
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Autism and Epilepsy![]()
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We know there is a link between autism and epilepsy. Studies have confirmed that up to 8% of intellectually able autistic children and over 20% of autistic children with an intellectual ability also have epilepsy (Amiet et al., 2008; Liu et al., 2022; Tuchman, 2017). There is also a correlation between the frequency of epileptic seizures and the degree of intellectual disability (Liu et al., 2022; Pacheva et al., 2019). Epilepsy can affect both speaking and non-speaking autistic individuals. ![]()
In this blog, we describe the various types of epilepsy that can be experienced by an autistic child or adult, strategies for seizure management, including medication and the behavioural and psychological effects of having epilepsy.![]()
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Onset of epilepsy![]()
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There are bimodal peaks for the onset of epilepsy, in the general and autistic population, namely infancy and puberty (Gillberg & Steffenberg, 1987). There is also an association between epilepsy and syndromic autism, which is autism associated with a medical condition such as Tuberous Sclerosis, Neurofibromatosis, mitochondrial disorders and Landau-Kleffner syndrome. We also recognise that epilepsy in childhood persists into adulthood in up to 80% of autistic individuals, with remission in about 16%. ![]()
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What is epilepsy?![]()
The term epilepsy is derived from the Greek word meaning ‘take hold’ or ‘seize’, hence the English term, seizure. During an epileptic seizure, nerve cells are caught in a reverberating cycle of repetitive firing. Excessive neuronal firing continues until excitatory neurotransmission is exhausted or the inhibitory networks extinguish it. Neurons that control muscles cause the muscles to contract, and neurons associated with other functions can lead to unusual sensations and altered levels of alertness and consciousness. We are all prone to seizures. It depends on our individual seizure threshold. ![]()
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A range of circumstances can lower the seizure threshold, such as high body temperature (fever), low blood sugar, stress, lack of sleep, and antipsychotic medication. Hormonal changes during adolescence, particularly for girls, can profoundly affect seizure activity. Sometimes, seizures are triggered by specific stimuli such as flashing lights and sudden noises, and for certain types of epilepsy, seizures occur more often during sleep. Seizures may also occur in clusters.![]()
Epilepsy is not a disease or mental illness, and a diagnosis of epilepsy requires two seizures that occur at least 24 hours apart. A seizure usually lasts seconds to minutes. An electroencephalogram, or EEG, can record excessive and abnormal neuronal activity in the cortex of the brain, which can be part of the diagnostic process for epilepsy. ![]()
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Types of epilepsy:![]()
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1. Generalised Seizures affect the entire brain at once; these include tonic-clonic, myoclonic, atonic, and absences. ![]()
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2. Partial seizures can be called focal or local and start from one part of the brain. Simple partial seizures (consciousness remains normal), complex partial seizures (consciousness altered), and the transition from focal to generalised seizures.![]()
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All types of seizures can occur in autistic individuals, but complex partial are the most common seizure type (Pacheva et al. (2019).![]()
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Generalised seizures:![]()
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Tonic-clonic seizure![]()
There are three stages in a tonic-clonic seizure.![]()
1: Aura: a preceding sensory experience which can be a particular smell, the sensation of tingling in hands, or the cognitive sensation of déjà vu (a feeling that something new has been experienced before) or jamai vu (the erroneous belief of having never experienced something that has been experienced). The recognition of experiencing an aura can be valuable in providing time to move to circumstances to avoid injury during the seizure, such as moving away from a table edge or going into the recovery position.![]()
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2: Ictal stage This is the seizure event. Usually, it starts with a loss of consciousness, followed by the Tonic stage, which involves stiffening of the extremities, and then the Clionic stage, which involves twitching movements, rhythmic jerks, clenching of teeth, and possible loss of bladder control. The person often turns blue as breathing stops in the tonic phase. The ictal stage usually lasts up to 5 minutes.![]()
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3: Postictal state includes sleepiness, muscle weakness, confusion, and difficulty speaking. Often, the person does not remember what happened during this time. There can be abnormal behaviour, including psychosis (delusions and hallucinations), after a seizure, which is relatively common, occurring in 6-10% of people (Wheless, 2009). The person is likely to feel drowsy and depressed afterwards. A non-speaking autistic young man typed, “The seizures are really exhausting, and I need to sleep for hours afterwards”.![]()
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A tonic-clonic seizure used to be called a ‘grand mal’.![]()
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Strategies for managing a tonic-clonic seizure:![]()
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1. Please remember to stay calm. This is not easy for a parent whose son or daughter has lost consciousness.![]()
2. Then, check safety from physical injury, such as protecting the person’s head, perhaps with an item of clothing, and clearing the adjacent area.![]()
3. Do not try to stop the movements.![]()
4. Protect the airways, but do not put anything in the person’s mouth.![]()
5. Ensure the person is in the recovery position.![]()
6. Stay with the person until they recover.![]()
7. Call for medical assistance if the seizure lasts more than ten minutes.![]()
8. Prolonged or recurring seizures that last more than 20 minutes are called Status Epilepticus, and parents and carers may be trained in the administration of medication to end this expression of epilepsy.![]()
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Myoclonic seizures![]()
These are brief, startle-like jerks and are often associated with drowsy states. A myoclonic seizure can occur when waking up.![]()
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Atonic seizures![]()
They are sometimes called a ‘drop attack’ with a sudden loss of muscle tone and risk of falling and injury with no attempt to protect oneself. The person may wear a protective helmet if they frequently experience an atonic seizure.![]()
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Absence seizures![]()
These are 3-30-second staring spells that used to be called a ‘petit mal’. There is a sudden halt in activity and appearing to ‘freeze’. The person’s eyes may roll up, stare or flicker with usually no confusion afterwards. Absence seizures are more likely in children than adults.![]()
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Partial seizures![]()
There are simple partial seizures with abnormal sensations, such as seeing spots or feeling fear, and Complex partial seizures with a well-defined aura followed by a confused ‘trance’. Partial seizures used to be called Temporal or Frontal Lobe seizures. ![]()
A partial seizure may start with automatisms, such as involuntary movements such as eye blinking and ‘fluttering’ and actions such as lip smacking, fumbling, and finger-picking movements. These can be signs that a partial seizure is imminent.![]()
The seizure can lead to experiencing intense feelings of fear or panic and include complicated motor automatisms, such as vigorous movements, kicking, hitting, and being aggressive to others or deliberately injuring themselves. ![]()
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As clinicians, we have supported many non-speaking autistic clients who have been referred due to extremely agitated behaviour. Our analysis of the antecedents and potential function of the agitated behaviour may not show any consistent or distinct patterns of motivation or function from the individual's perspective, current and past circumstances, or quality of support. The extremely agitated behaviour appears to occur quickly and is unresponsive to behaviour management strategies. Those who know the person may say that this behaviour is out of character. When extremely agitated, they cannot be distracted or encouraged to end the agitation, which can involve the destruction of property or considerable self-harm. We have recognised that the sudden intensity and ineffectiveness of appropriate response strategies could indicate that the autistic person is experiencing a partial seizure, and we recommend an assessment by a neurologist.![]()
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Unfortunately, a partial seizure is often not recorded on an EEG. The false negative rate can be up to 70%, although a repeat EEG reduces this to 30%. Thus, an EEG recording in the normal range does not automatically rule out experiencing partial seizures. However, the neurologist will explore the nature of the agitated behaviour to identify any preceding automatisms, and it can be helpful for parents or carers to record videos of the agitated behaviour on a mobile phone to indicate the degree of consciousness. We have found that medication for epilepsy can be very effective in reducing the frequency, intensity and duration of agitated behaviour due to a partial seizure.![]()
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Medication![]()
Anti-epileptic medication is divided into narrow-spectrum medications, such as carbamazepine, and broad-spectrum medications, such as lamotrigine, based on the seizure type. The primary effect of anticonvulsant medication is on the inhibitory neurotransmitter GABA. Medication is usually daily and has no significant effect on cognitive functioning. ![]()
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A study of autistic research participants' responses to antiepileptic medication found that 58% were seizure-free on medication, and a further 27% had more than a 50% reduction of seizures. There was therapeutic resistance in 15%, and consideration may be given to prescribing more than one antiepileptic medication (Pacheva et al., 2019). ![]()
It can take up to a month for the medication to have a positive effect, and regular blood tests will need to be undertaken to confirm whether the anticonvulsant is within the therapeutic range. There is a concept of a ‘window of opportunity’—not too little or too much medication. Medication may be discontinued for children who have been seizure-free for about two years and about five years for adults.![]()
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Psychological effects of epilepsy![]()
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Having seizures witnessed by family members, friends and the general public can lead to low self-esteem, social withdrawal and internalising problems such as depression. The autistic person may need psychological support from family and perhaps a psychologist. ![]()
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There is also the effect on parents, as witnessing a seizure can be frightening, being unsure when the seizure will end, and worrying about what they can do during and after the seizure. Parents need to be compassionate but not overprotective. They may also be concerned about the long-term effects of epilepsy but can be reassured that repeated seizures do not cause brain damage.![]()
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Where to from here?![]()
On Friday, the 28th of June, Michelle and Tony will present a full-day course on Understanding and Supporting Non-speaking Autism. The course will equip participants with an understanding of life as experienced by a non-speaking autistic person, the reasons for specific behavioural and emotional reactions and the creation of an individualised plan to enhance the quality of life and well-being.![]()
Participants in the course will learn practical strategies to encourage speech, the value of alternative and augmentative communication systems, how to acquire new abilities and coping mechanisms for accommodating changes in routines and expectations, sensory sensitivity, and social engagement, conditions that co-occur with autism including epilepsy and how to express and regulate intense emotions constructively.![]()
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attwoodandgarnettevents.com/product/webcast-event-understanding-and-supporting-non-speaking-autis...![]()
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References![]()
Amiet et al. (2008). Epilepsy in autism is associated with intellectual disability and gender. Biological Psychiatry 64, 577–582.![]()
Gillberg and Steffenberg (1987). Outcomes and prognostic factors in infantile autism and similar conditions Journal of Autism and Developmental![]()
Liu et al. (2022). Prevalence of epilepsy in autism spectrum disorders: A systematic review and meta-analysis Autism 26.![]()
Panayiotopoulos CP (2010). A clinical guide to epileptic syndromes and their treatment based on the ILAE classifications and practice parameter guidelines (Rev. 2nd ed.). London: Springer. ![]()
Pacheva et al. (2019). Epilepsy in Children with Autism Spectrum Disorder. children 6, 15; doi: 10.3390/children6020015![]()
Tuchman (2017) What is the relationship between Autism Spectrum Disorders and Epilepsy? Seminars in Pediatric Neurology ![]()
Tuchman and Rapin (2002). Epilepsy in Autism. Lancet Neurol. 2002;1(6)![]()
Wheless (2009). Advanced therapy in epilepsy. Shelton, Conn.: People's Medical Pub. House. p. 443. ![]()
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#actuallyautistic #autism #autistic #autismawareness #autismacceptance #autismspectrum #psychologist #psychology #alliedhealthprofessionals #teachers #psychiatry #InclusiveHealthcare #InclusiveSociety #BlogWednesday #epilepsy
The study by Tarver et al. (2020) is a qualitative exploration into the experiences of parents managing anxiety in autistic individuals who speak few or no words. ![]()
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Study Purpose![]()
The research aimed to understand how parents recognise and manage anxiety in autistic children who are minimally verbal. Since Autistic individuals who speak few or no words are rarely involved in research, the study sought to address this gap by exploring this understudied group's challenges and strategies to develop better support mechanisms and anxiety interventions tailored to their specific needs. ![]()
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Participants![]()
The study included parents and caregivers of 17 autistic individuals, ranging in age from 4 to 25 years, who were described as using odd words only or not speaking at all. These participants were recruited through an existing database at the University of Birmingham and through social media advertisements.![]()
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Methodology![]()
Data were gathered through semi-structured interviews, which focused on parents' experiences in recognising, managing, and understanding the impact of their child’s anxiety. The researchers employed thematic analysis to interpret the data, identifying themes across the interviews.![]()
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Findings![]()
Parental Recognition of Anxiety![]()
1. Communication Difficulties: Parents expressed challenges in interpreting their child’s anxiety due to limited or non-existent verbal communication. They often had to rely on interpreting behaviours as indicators of anxiety, which could be ambiguous or misleading.![]()
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2. Overlap with Other Behaviours: Anxiety behaviours often overlap with autistic behaviours, such as behaviour due to sensory sensitivities or repetitive behaviours, making it difficult for parents to distinguish between them. This overlap complicated parents' ability to accurately identify anxiety.![]()
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3. Knowing the Individual Well: Parents emphasised the importance of knowing their child’s behaviours and personality. They observed that their ability to recognize signs of anxiety was strongly linked to their familiarity with their child's typical behavioural patterns. Over time, as parents became more attuned to their child's cues and responses, their capacity to identify anxiety and its triggers improved - Which has been instrumental in effectively supporting and managing their child's anxiety.![]()
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Parental Management of Anxiety![]()
1. Balance Between Avoidance and Exposure: Parents navigated a delicate balance between protecting their children from anxiety-provoking situations and exposing them to these situations where it was safe to build resilience. Some parents consciously worked on exposing their children to mild stressors to reduce anxiety over time. ![]()
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2. Sensory Strategies: Recognising the role of sensory sensitivities in anxiety, parents employed various sensory calming strategies, such as deep pressure, the use of weighted items, and controlling environmental noise.![]()
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3. Preparation for Upcoming Events: To mitigate anxiety related to transitions or new activities, parents often prepare their children using visual schedules or repeated verbal cues to create predictability.![]()
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4. Distraction: This was a common short-term strategy used to manage immediate anxiety symptoms by diverting the child’s attention to more comforting or engaging activities.![]()
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5. Time and Space: Giving the child time and space to de-escalate during anxiety episodes was crucial, especially when the child exhibited high-risk behaviours. Limiting verbal communication and physical interaction during these times was often necessary.![]()
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6. Reassurance: Parents used various forms of reassurance, including physical comfort and verbal affirmations, to alleviate their child’s anxiety.![]()
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Despite these efforts, parents noted that these strategies were not always effective, particularly when certain background factors like tiredness or external stressors were present.![]()
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Impact of Anxiety![]()
1. Restricted World: Anxiety significantly limited the child’s and family’s engagement in wider social and recreational activities. Families often had to forego or extensively plan any outings to accommodate the child’s anxiety issues.![]()
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2. Parental Well-being: Managing their child's anxiety had profound effects on parents' emotional health, often leading to increased stress and concern about their effectiveness in managing these challenges.![]()
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3. Impact on Health: Some parents noted concerns about the physical health effects of chronic anxiety on their children, such as weight loss or stress-induced physical reactions.![]()
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Implications![]()
The findings highlighted the complexity of managing anxiety in minimally verbal autistic individuals. The authors suggest a need for tailored anxiety interventions that can be adapted to the unique challenges faced by this population. Additionally, the study highlights the importance of developing reliable assessment tools to better identify anxiety in non-verbal individuals.![]()
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Where to from here:![]()
Understanding And Supporting Non-Speaking Autism course 28 June 2024. ![]()
This course educates participants about the interplay between severe speech and language disorders and autism, emphasising the development of practical strategies to support non-speaking autistic individuals. It covers a range of topics, including sensory processing, emotional management, social engagement, and movement disorders, drawing from scientific research, clinical insights, and autobiographies.![]()
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attwoodandgarnettevents.com/product/webcast-event-understanding-and-supporting-non-speaking-autis...![]()
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#actuallyautistic #autism #autistic #autismawareness #autismacceptance #autismspectrum #psychologist #psychology #alliedhealthprofessionals #teachers #psychiatry #InclusiveHealthcare #InclusiveSociety #ResearchTuesday
"Raising the voices of AuDHD women and girls: exploring the co-occurring conditions of autism and ADHD" by Emma Craddock: ![]()
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What is the article about, and why is this important? ![]()
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The article discusses the unique challenges faced by women and girls who are both autistic and ADHD—"AuDHD". It discusses the historical oversight and misdiagnosis of these conditions in women due to prevailing gender biases in medical research and practice. The article also critiques the current diagnostic criteria and practices, which have been largely based on male-centric studies, and advocates for a more inclusive approach that recognises the intersectionality of gender, neurodiversity, and other identity factors. ![]()
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What are the main findings from the article? ![]()
The main findings include: ![]()
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High Co-occurrence of Autism and ADHD: There is a significant overlap between autism and ADHD, with estimates that 30-80% of individuals with ADHD are also autistic. ![]()
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Gendered Diagnosis Issues: Diagnostic criteria and practices have historically overlooked women, leading to underdiagnosis or misdiagnosis. Women and girls often exhibit internalised symptoms and are more adept at masking their difficulties, which diverges from the male-centric models used in diagnosis. ![]()
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Inadequate Support Systems: There is a profound lack of pre- and post-diagnostic support tailored to the needs of neurodivergent women, compounded by long waiting lists and inadequate healthcare responses to their unique challenges. ![]()
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Need for Intersectional Research: The article argues for research that is conducted by and with neurodivergent individuals, particularly emphasising the inclusion of women who have been historically left out of research narratives. ![]()
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What next - as in implications and future approach we should take from what is in the article? ![]()
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Holistic and Intersectional Assessments: ![]()
Future diagnostic criteria and support systems should consider the full spectrum of an individual's identity, including gender, race, and other socio-economic factors, to ensure a comprehensive understanding and support mechanism. ![]()
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Shift in Research Paradigms: ![]()
There is a call for a paradigm shift in research and healthcare practices to include qualitative studies that can capture the varied experiences of neurodivergent individuals, particularly women. ![]()
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Empowering Neurodivergent Voices: ![]()
Encouraging and facilitating the participation of neurodivergent individuals, especially women, in research and advocacy to ensure that their needs and experiences shape the policies and practices that affect them. ![]()
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Addressing Systemic Barriers: ![]()
The article advocates for systemic changes to dismantle the barriers neurodivergent individuals face, not only in healthcare but also in education, employment, and social services. ![]()
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These steps are crucial for fostering a society that truly supports and empowers AuDHD women and girls, recognising their unique challenges and contributions. ![]()
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What we want to add: ![]()
Inclusivity Across All Gender Profiles ![]()
Recognising the underdiagnosis of autism and ADHD in women and girls has brought vital attention to this group. However, it is equally important to extend this awareness to all individuals who present with an internal presentation of autism, regardless of their gender identity. This includes non-binary and transgender individuals who may experience similar diagnostic challenges due to subtler characteristics and greater masking abilities. ![]()
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Autistic individuals across all gender profiles encounter barriers shaped by societal expectations and cultural norms, which can significantly influence diagnostic accuracy. Therefore, diagnostic criteria and assessments must be refined to acknowledge and validate the internal experiences of autism without bias, ensuring sensitivity to the diverse ways autism presents itself. ![]()
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Healthcare providers require training to recognise these varied presentations in individuals of any gender. Similarly, support systems and therapeutic approaches need to be adaptive, addressing the unique needs of neurodivergent individuals across the gender spectrum. ![]()
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Where to from here? ![]()
If you are interested in learning more about the combination of ADHD, executive functioning and autism, our online course Autism, ADHD and Executive Function covers the latest research on autism and ADHD, the strengths and challenges of being autistic and having ADHD, and strategies to cope at school, work, and home. ![]()
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attwoodandgarnettevents.com/product/webcast-event-autism-adhd-and-executive-function-10-may-2024/![]()
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Reference: ![]()
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Craddock, E. (2024). Raising the voices of AuDHD women and girls: exploring the co-occurring conditions of autism and ADHD. Disability & Society, 1–5. doi.org/10.1080/09687599.2023.2299342 ![]()
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#actuallyautistic #autism #autistic #autismawareness #autismacceptance #autismspectrum #psychologist #psychology #alliedhealthprofessionals #teachers #psychiatry #InclusiveHealthcare #InclusiveSociety #ResearchTuesday