Autism is a heterogeneous neurodevelopmental disorder for which a large variety of treatments are offered, including alternative treatments. Vaccine-related treatments (treatments falsely claiming to cure autism by addressing its alleged cause: routine childhood vaccines such as MMR) continue to be offered worldwide, despite widespread evidence against the effectiveness and even possible harm related to these treatments. We analysed the use of alternative treatments in two studies: a survey study (N = 1989, autistic adults and parents/legal representatives of individuals with autism) and a clinical care study (N = 4520, patient files from a treatment center for autism). Both studies found a relatively high frequency of alternative treatments (23.0–30.7%) – in children even 46.4% -, mostly in combination with mainstream treatment. In the survey study vaccine-related treatments were used by 3.2% of all individuals with autism (and 6.7% of autistic children), and alternative treatment use was predicted by co-occurring diagnoses, younger age of diagnosis and mainstream treatment use. In the clinical care study, patients who had received treatment from a homeo-/osteopath more often had highly educated parents from Dutch/Western background and were more often enrolled in special education. Alternative treatments are widely used and should be included in treatment guidelines. Parents, practitioners and individuals with autism should be both advised and warned about the benefits and risks of these treatments. More research is needed to better understand the choice for and effect of alternative treatments for autism, and mainstream care should be improved.
Alternative treatments for autism: prevalence and predictors.
Autism Spectrum Disorder (ASD, autism from hereon) is a heterogeneous neurodevelopmental disorder that occurs in around 1% of the population and often co-occurs with other disorders or difficulties (American Psychiatric Association, 2013; Lord et al., 2020). Many alternative treatments - this term is used to describe treatments that fall outside of conventional mainstream care - are offered for autism. Some of them claim to cure autism by addressing its alleged cause: vaccines and other toxic substances. Despite abundant evidence for the contrary, autism is still falsely linked to routine childhood vaccinations such as the MMR-vaccine. Many alternative treatments for autism are offered worldwide, some of which spread misinformation about vaccinations and the possibility of curing autism. In this study we analysed the use of alternative and vaccine-related treatments among autistic individuals.
Autism is the result of both genetic and environmental factors (Lord et al., 2020). There is no cure for autism (nor is this a desired objective according to many (Bagatell, 2010; Barnes & McCabe, 2012)), but autistic individuals can greatly benefit from appropriate treatment and support. Most treatments focus on reducing and learning to deal with the core autism symptoms and alleviating additional problems (Fuentes et al., 2020). In young children, treatments aim to stimulate social initiative and communication. In older children and adults, treatment mostly focusses on specific problems, social skills, regulating behaviour or dealing with sensory stimuli. Medication can be used to treat co-occurring problems like aggression and irritability (Mayes et al., 2020). Conventional treatments for autism are described in several guidelines (see the Dutch Youth Institute (Nederlands Jeugd Instituut NJI, 2017), the Dutch mental health care quality standards (GGZ Standaarden, 2020), the European society of child and adolescent psychiatry (ESCAP; Fuentes et al., 2020), the British National Institute for Health and Care Excellence (National Institute for Health and Care Excellence (NICE), 2013) and the Centers for Disease Control and Prevention (Centers for Disease Control and Prevention (CDC), 2019); also see Jonkman et al., 2022), their advice is based on scientific evidence, general practice and the theoretical framework underlying the treatment approach.
4. General discussion
Combining both studies, we found a persistent use of alternative treatments in autistic individuals, including disputed vaccinerelated treatments. It is imperative that more information about alternative and vaccine-related treatments is made available in treatment guidelines. Parents, practitioners and individuals with autism should be both advised and warned about the risks of alternative treatments. Furthermore, alternative treatments are mostly used by autistic individuals with more severe and additional problems and often in combination with mainstream care (Study 1). Amongst patients in mainstream care, Dutch/Western and highly educated individuals more often used alternative treatments (Study 2). Combined, our results suggest that there is something lacking in mainstream care for individuals with autism. More research should be carried out to determine why people turn to alternative treatments, and mainstream care should be improved to ensure that autistic individuals, and especially those with additional problems, receive all the support and care they need.