By Emily.H
Health-related quality of life is a concept that includes domains related to ones physical, mental, emotional, and social functioning [1]. It has been reported that both autistic children and adults frequently report a lower quality of life than those who are non-autistic. This trend is thought to be somewhat driven by social isolation and a diminishing belief in one’s own capabilities following such a complex diagnosis [2]. This emerging evidence has given rise to an important question, which researchers are now attempting to investigate further: ‘could an early diagnosis of autism improve a person’s quality of life?’
Potentially, if mental health professionals intervene during the first few years of a child’s life, perhaps comorbidities (which exacerbate symptoms of autism if left untreated) could be better managed, thus leading to a greater quality of life. Comorbidity refers to the simultaneous presence of two or medical conditions in a patient. Recent studies have revealed that 70% of people diagnosed with ASD also have a comorbid psychiatric disorder, such as ADHD, OCD, and anxiety [3]. Additionally, 20% of women who suffer with eating disorders are also autistic [4] (Story from Others on ASD and Anorexia – here) , with ⅔ of these people also struggling with anxiety [5]. People have attempted to explain this specific co-occurrence by suggesting that eating disorders are a way to gain back control over one’s life, and enabling the management of persistent feelings of anxiety. Therefore, early intervention is important as it could prevent or reduce the presence of additional comorbidities that are acquired later on in an individual’s life, which may have formed due to lack of “early intervention”.
The success of early intervention strategies can be further explained by looking at the concept of neuroplasticity (the biological, chemical, and physical capacity for the brain to reorganise its structure) [6]. Behavioural symptoms of ASD typically emerge during the first few years of a child’s life, when the brain is still developing at a rapid rate. For example, abnormalities in the amygdala may emerge, contributing to poor social communication skills and increased social anxiety [6,4]. It has been revealed that if early intervention is provided before the age of 4, an autistic child’s communication skills will improve considerably, because the brain is able to alter its neural networks, neural plasticity. This theory could also explain why fewer than 10% of individuals with ASD remain non-verbal with intervention [7]. This evidence supports the idea that an early diagnosis would increase a child’s quality of life, so shouldn’t this be what people strive for?
Although there is strong evidence to support the idea that an early diagnosis of autism can considerably improve a person’s quality of life, there are some significant disadvantages that need to be considered. Firstly, following a diagnosis, the type of interventions that are put in place should be carefully considered. Currently, the most widely used therapy for autism is Applied Behavioural Analysis (ABA). The focus of this is on the improvement of specific behaviours, such as social skills and communication, through the use of operant conditioning (a method of learning that occurs through rewards and punishments for behaviour). Many members of the autistic community, disagree with this type of intervention. Teaching children from a young age that the way they behave is fundamentally wrong could be extremely damaging to one’s self-esteem. Additionally, ABA therapy focuses on making autistic people appear ‘indistinguishable from their peers’ by discouraging behaviours without addressing their emotional content. For their quality of life to be improved, shouldn’t we be teaching newly diagnosed children to embrace their differences?. Ultimately, ‘Autistic people are not faulty neurotypicals. Not the same does not equate to wrong. So where is the logic in trying to correct, or fix or change someone whose neurology is not defective but different. Why not nurture, support and embrace knowing that your commitment to love and acceptance has the potential to make a life changing difference’ [8].
It is also important to consider the effects of being labelled as ‘autistic’ from an early age. It worries me that children are being over-protected following their diagnosis, making it more difficult for them to be independent as they grow older. For example, if parents don’t encourage their autistic child to attend school, they will not only miss out on an education, but also the vital social skills that are required for everyday life. This links back to the concept of neuroplasticity. If parents encourage their children to engage in social interactions, the brain may be able to rewire its neural connections, leading to less social anxiety as a teenager and adult. From my perspective, all individuals on the spectrum should be given the same opportunities as ‘neurotypicals’. Protecting them is not necessarily going to improve their quality of life.
There is a natural assumption that an earlier diagnosis of autism results in more favourable outcomes. To confirm this more robustly, further research needs to be conducted to show the correlation between an early diagnosis and increased quality of life. However, it would also be of significant use to continue investigating the early signs of autism, so that more children can receive an early diagnosis if they need it. Thus, it would be productive to provide extra funding to new studies that aid in the provision of different data, this will help us explore and expand our knowledge of autism more, especially now there is new information on the different presentations of autism. Successful studies, such as The British Autism Study of Infant Siblings (BASIS – find here ), are already aiming to improve quality of life by educating others through the research that they do; highlighting the importance of such studies, as potentially they may one day enable young people to receive early diagnosis, so all children can reach their potential.
References :
[1] Health-Related Quality of Life and Well-Being n.d. https://www.healthypeople.gov/2020/about/foundation-health-measures/Health-Related-Quality-of-Life-and-Well-Being
[2] Hess P. Some autistic people report poor quality of life, but many do not 2020. https://www.spectrumnews.org/news/some-autistic-people-report-poor-quality-of-life-but-many-do-not/
[3] Fisher M. Autism and comorbidities: Opening the pathway to communication through treatment 2019. https://autismspectrumnews.org/autism-and-comorbidities-opening-the-pathway-to-communication-through-treatment/
[4] Wentz E, Lacey JH, Waller G, Råstam M, Turk J, Gillberg C. Childhood onset neuropsychiatric disorders in adult eating disorder patients. A pilot study. Eur Child Adolesc Psychiatry 2005;14:431–7.
[5] Gardner A. Two-thirds of people with an eating disorder have this mental health problem too 2018. https://www.health.com/condition/ocd/eating-disorders-anxiety
[6] Losardo A. Neuroplasticity and Young Children with Autism: A Tutorial. Anatomy & Physiology 2016;06. https://doi.org/10.4172/2161-0940.1000209.
[7] Koegel LK. Interventions to facilitate communication in autism. J Autism Dev Disord 2000;30:383–91.[8] Lakhani K. Setting up the Most Effective Program for Our Children 2016. https://www.rdiconnect.com/setting-up-the-most-effective-program-for-our-children/
[8] Lakhani K. Setting up the Most Effective Program for Our Children 2016. https://www.rdiconnect.com/setting-up-the-most-effective-program-for-our-children/
