April: Autism Acceptance Month
Innovative Trials are passionate about ensuring our diverse population is adequately represented within medical research. Whether it is wanting to see more people from underrepresented communities choosing science as a career and pushing for greater patient diversity in clinical trials or focusing on what we are doing internally to celebrate and promote equality and diversity.
Throughout 2021, we have pledged to share our education and experiences to ensure inclusivity across the board. Each month we will be releasing communications in line with national and international awareness campaigns.
So far we have explored Women’s Health in our January Awareness blog and diversity in Cancer, Heart Disease and Scleroderma in our February Awareness blog. Last month we looked at Ovarian Cancer and Prostate Cancer as part of our March Awareness blog.
This month, our Patient Recruitment Associate, Kashif Nasar explores Autism as part of Autism Acceptance Month.
Autism Spectrum Disorder (ASD) is a developmental disability that can have a varying impact on a person’s social skills, communication, relationships, and self-regulation. It is defined by a certain set of behaviours and differing extent to which the condition manifests in people, is what leads to it being defined as a condition that occurs along a ‘spectrum’.
Not much is known conclusively about what causes the condition, with trauma during birth, birth weight and babies having incompatible blood types from their mother, being at increased risk of the condition. Confirmed diagnosis can help a person understand themselves better and assist their family/friends in providing support. With this support and services that may be available, it is possible for someone with autism to live a high quality of life and function well within society, though their place on the spectrum can mean a differing number of challenges.
Characteristics & Diagnosis
Autism is characterised by persistent differences in communication, interpersonal relationships, and social interaction across different environments. This can be seen as people being nonverbal or having atypical speech patterns, having trouble understanding nonverbal communication, difficulty making and keeping friends, difficulty maintaining typical back-and-forth conversational style. Another aspect is restricted and repetitive behaviour, patterns, activities and interests. This can be seen in the repeating of sounds or phrases (echolalia), repetitive movements, preference for sameness and difficulty with transition or routine, rigid or highly restricted and intense interests, extreme sensitivity to or significantly lower sensitivity to various sensory stimuli.
These core features of autism must be present in early childhood, but may not fully manifest until social demands exceed the person’s capacity to cope with them, and challenges may be masked by learned coping strategies or a poor understanding of the condition.
Around 700,000 people in the UK are estimated to have a diagnosis of autism. 1 in 100 children in the UK have a diagnosis of autism spectrum disorder. Delays and long waiting times for diagnosis, followed by inadequate or ineffective support, can be significant barriers to a child or young person’s development.
Although autism impacts people regardless of race or ethnicity, there are racial and ethnic disparities in diagnosis. Reports have consistently noted that more white children are identified with ASD than black or Hispanic children, though potential barriers to the identification of ASD in children are stigma, lack of access to healthcare services due to non-citizenship or low-income, and non-English primary language.
Currently, boys are also approximately 4.5 times more likely to have an autism diagnosis than girls of the same age. However, recent research suggests that girls may not show autism in the same way as boys and might go undiagnosed because of that.
Autism impacts an individual throughout their life. However, research shows that early diagnosis can lead to improved quality of life. Here are some of the potential signs:
- Is non-verbal; developing speech later than on average or not at all.
- Repetition in language, behaviour or movement, such as repeating the same words/sounds, asking the same question.
- Atypical nonverbal communication, including avoiding or breaking eye contact, giving few facial expressions, or having a monotone.
- Chooses solitary or parallel play, rather than engaging in associative or cooperative play with other children
- Extremely distressed by changes, including new foods or changes in plans or expectations.
- Preference for predictable, structured play over spontaneous or make-believe play.
- Strong, persistent interest on specific topic, place, person or item.
Below are details of the difficulties autistic people may have:
Repetitive and restrictive behaviour
Autistic people prefer to follow routines, to have the comfort of knowing what is going to happen in the time ahead. This can mean travelling the same way and along the same path, wearing the same clothes or knowing what to eat over the course of the day. Repetition is also a major part of their behaviour. This can mean repeating the same movements such as clenching fists, touching their face, rocking or stamping their feet. This can extend to the repetitive use of objects, such as opening and closing doors. Engaging in these behaviours can help calm Autistic people when they are stressed or anxious. They can also be enjoyable, forming their entertainment, for example, seeing a funny moment on a video and watching it over and over. For an Autistic person, the value of the moment does not diminish with repeat viewing. Changes to routine, or being unable to follow a set or desired pattern, can be very distressing for autistic people. This can lead to upset or anxiety, which can lead to varying degrees of reaction.
Sensitivity to light, sound, taste or touch
Autistic people may experience increased or decreased sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. What may be possible for others to tune out or ignore completely, may not be so easy for an Autistic person. The appearance or sounds of an unfamiliar place, for example, could lead to a behavioural reaction that could be confusing to those who do not know the Autistic person. As a result, this can lead to seemingly ‘regular’ situations and places being avoided due to this sensitivity issue. Places that appear chaotic and disordered, such shopping areas, can be particularly overwhelming and cause sensory overload.
Highly focused interests or hobbies
For many autistic people, interests and hobbies become a comfort and calming subject, leading to a lifelong interest and possibly extending to expertise. This often comes with a desire to demonstrate and even share their knowledge obsessively. This can appear to be very general, matching with interests of others, such as interest in motor cars or art. This high focus can lead to autistic people doing well academically and in the workplace, but struggling in other areas of their life or neglecting other important matters.
In social situations or when facing changes, Anxiety is a real difficulty for many autistic persons. The impact of such problems can vary from causing mild distress to inflicting serious psychological and physical damage. Consequential effects of such difficulties can mean that major quality of life issues arise. Learning to recognise triggers and finding coping mechanisms to help deal with are a major part of an Autistic person’s development into being able to manage their anxiety. Unfortunately, this is not always possible for all Autistic people and over one third have serious mental health issues. Depending on the availability of mental health services, Autistic people can be left to cope on their own.
Meltdowns and shutdowns
When circumstances become overwhelming, an autistic person can go into meltdown or shutdown. These intense and exhausting experiences often mean a loss of control for them. This can mean instances of shouting or screaming (verbal) or kicking, punching, lashing out (physical) or even both, in the more severe instances. In children, such reactions are often mistaken for tantrums, with a poor understanding of the issue leading to an exacerbation of the problem. A shutdown can be characterised as a withdrawal, appearing to be less intense than a meltdown, but it can be as debilitating for an Autistic person. The appearance of passivity is the reason for this misconception, but for the person going through the difficulty, the feeling of being trapped can be severe.
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Equality, Diversity and Inclusion continues to be high on our agenda. We are working behind the scenes to push this forward. In Part Two of our April Awareness blog, we will explore Ramadan and Bowel Cancer awareness month.
Find out how we’re working with clients to ensure greater patient diversity in clinical trials.