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The Complex Process of Profiling & Diagnosing Autism

According to the NHS (2019), ‘being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people’. The core characteristics of autism are: (1) poor social communication; (2) poor social interaction; (3) sensory processing differences; (4) sensory sensitivity; (5) repetitive behaviours; and (6) obsessions and fixations on special interests. These characteristics can vary, and some individuals show two or three, whilst others might be more severely affected (Lincoln College, 2022). This blog post will explore these core characteristics, the unofficial subtypes of autism, and the complex process of diagnosis.

Individuals experiencing the behavioural abnormalities, will show a fixation on specific activities, tools, toys, etc. They may use these objects in particular ways. Furthermore, they may engage in repetitive behaviours such as hand flapping or spinning around, might become upset if their routine is disrupted, and will insist on maintaining consistency. Moreover, they might have unusual sensory interests, either a high or low tolerance to pain, unpredictable verbal outbursts, and might become upset at sensory intrusions. Finally, they might also engage in risky or self-injurious behaviour. 

Individuals experiencing communication difficulties might have a delayed language development, speech difficulties and/or reliance on alternative communication methods, high levels of articulation, literal interpretation of words (i.e. lack of understanding of jokes or sarcasm), problems starting and maintaining conversations, stereotyped and repetitive use of phrases, a monotonous voice tone, and poor interpretation of body language or other forms of non-verbal communication. 

Individuals experiencing social difficulties might struggle to form and sustain friendships, might show a lack of interest in social activities, might engage in inappropriate social responses, might have a lack of awareness of boundaries, might reject expressions of affection such as hugging, might prefer to role play,  and might be naive, suggestible and overly trusty of others. 

The Unofficial Subtypes of Autism

Due to current diagnostic manuals such as the DSM-V (American Psychiatric Association, 2013) and ICD-11 (World Health Organisation, 2019), individuals are generally given a diagnosis of Autism Spectrum Disorder (ASD) regardless of their profiles. Yet, there are unofficial categories used by the autistic community to understand differences better.

Individuals categorised as having Asperger’s syndrome tend to have a higher than average I.Q., and unlike other forms of autism, no speech or cognitive difficulties. However, interpersonal difficulties are prevalent for them, as they struggle to communicate and interact with others. Yet, the symptoms are invisible and difficult to spot. They may also have pathologies which affect their day to day life (Lincoln College, 2022). Asperger’s syndrome is no longer diagnosed (McCrimmon, 2018) but it is still generally seen as a subtype of autism. It is also believed that Asperger’s syndrome is a form of high-functioning autism (HFA) which according to Lincoln College (2022) entails a delay in development, an inability to read facial expressions, a hypersensitivity to light and noise, and a desire for socialisation without understanding how to effectively do it. Nevertheless, HFA is not diagnosable, although it is also recognised by autistic populations. 

Individuals categorised as having Pathological Demand Avoidance (PDA) tend to have intersubjective difficulties and to avoid the demands of everyday life. This profile is not an universally recognised form of autism by healthcare professionals, however, it is still generally used by autistic populations. According to the National Autistic Society (n.d.), an individual with this profile ‘(a) resists and avoids the ordinary demands of life; (b) uses social strategies as part of avoidance, for example, distracting, giving excuses; (c) appears sociable, but lacks some understanding; (d) experiences excessive mood swings and impulsivity; (e) appears comfortable in role play and pretence; and (f) displays obsessive behaviour that is often focused on other people’. Furthermore, Lincoln College (2022) states that these individuals have an anxiety-based desire to remain in control all the time, and can become aggressive if they feel they are not in control. They also seem to get stressed out if anything is expected of them. However, if they feel comfortable, they seem normal. 

Individuals labelled as having Kanner’s Autism also known as ‘Classic Autism’ are described as having impairments in communication, and a fixation on activities with restrictive or repetitive behaviour such as hand flapping. The criteria for this autism profile is: (1) an impairment in the use of non-verbal skills, poor eye contact, and an inability to interpret body language; (2) inability to make and maintain friendships; (3) inability to enjoy interests or share activities; (4) inability to respond appropriately to emotion in others; (5) delay in, or complete lack of language development; (6) repetitive use of language; (7) fixation on a particular interest; (8) inflexibility to change routines; and (9) repetitive physical movements (Lincoln College, 2022). However, this is not diagnosable. 

Individuals diagnosed as having atypical autism are those whose pattern of behaviour fits most but not all of the criteria for other forms of autism. It can often be undiagnosed for many years as individuals tend to be given this label later in life. 

Finally, individuals categorised as having Savant syndrome have skills which are uncommon to most people, as well as having the general characteristics of autism. Among the extraordinary abilities seen in savant autism are being able to mentally solve complex mathematical problems, having great memory for specific details of something, high quality artistic skills, and outstanding musical talent. 

Diagnosing Autism

The advantage  of diagnosing Autistic Spectrum Disorder (ASD) is that individuals and their families can find as much information as possible about the condition and engage in psychoeducation, which can foster a sense of relief. The diagnosis might help the individuals have more clarity about their difficulties, and might give them more insight into potential comorbidities or wrong diagnoses. Moreover, a personalised care plan with strategies can be devised for ongoing support in all sectors. Nevertheless, a disadvantage of diagnosis is that individuals have to live with the stigma (i.e. negative stereotyping) associated with psychiatric labels, and how the label can affect their relationships and lead to prejudice and discrimination. Furthermore, another disadvantage is that individuals might become depressed with the fact that autism has no cure. They might also experience more adverse circumstances as a result of having a diagnosed disability, and all these negative variables might lead the individual to internalise the label and to embrace the maladaptive behaviours associated with the label which shapes their identity (Lincoln College, 2022). 

Diagnosis is usually done through a person’s GP; however, a paediatrician, a speech and language therapist, an educational psychologist, and/or a specialist psychologist might also need to be involved; and sometimes this multidisciplinary approach can take years before a diagnosis is given (Lincoln College, 2022). Moreover, information for diagnosis is also gathered from relatives, teachers and friends of the individual presenting with symptoms. The individual might be observed as he or she conducts activities and skills might be tested. Furthermore, professionals working with people with autism must take on board the National Institute for Health and Care Excellence (NICE; n.d.) guidelines. These specifically state that anyone working with autism should be skilled and competent and have tactful communication skills (Lincoln College, 2022). 

There are several factors that influence the diagnosis of autism: (1) culture— behaviours classed as ‘abnormal’ by a society might bring attention and concern to others. Some countries might perceive different behaviours as ‘symptomatic’, whilst others might see the same behaviours as completely ‘normal’. Also, stigma might become a barrier to diagnosis; (2) age— even though the symptoms of autism can be spotted when the individual is 2-3 years old, many professionals refuse to make a diagnosis until later on. However, some professionals are also reluctant to diagnose adults; (3) sex— males tend to get a diagnosis of autism more than females. Some believe that this is due to how different the characteristics manifest, with girls being more able to hide the symptoms; (4) parental attitudes— some children might not get diagnosed because their parents cannot effectively spot the symptoms, or they might ignore these manifestations out of fear of being judged. Alternatively, parents might insist to the family GP that the child has a problem even if such is not the case; (5) coexisting conditions— autism often has mental and physical comorbidities, making it more difficult to pinpoint the exact cause for specific behaviours, and making diagnosis more complicated; and (6) genetic factors— autism has a genetic link that runs in families. 

Furthermore, there are also barriers to diagnosing autism such as a lack of local services for autistic people, which means that a formal diagnosis with the necessary multidisciplinary specialists is not always possible as a GP might have limited knowledge of the condition. This might subsequently lead to individuals not being diagnosed for a long time, which might prevent them from wanting a diagnosis in the future. It can also lead to individuals not having a documented developmental history, which can affect the process of diagnosis.  Moreover, another barrier to diagnosing autism is how subtle some of the symptoms can be, and how subjective the interpretation of these symptoms also is (Lincoln College, 2022).  

References

American Psychiatric Association (2013a) Diagnostic Statistical Manual of Mental Disorders, 5th ed.

Lincoln College (2022) ‘The diagnosis and characteristics of autism’, TQUK Level 3 Certificate in Understanding Autism [Online]. Available at https://lincolncollege.equal-online.com/courseplayer/autisml3/?ls=8663048&cpid=223390  (accessed 22 February 2022). 

McCrimmon, A. (2018 ‘What happened to Asperger’s syndrome?’, The Conversation, 8 March [Online]. Available at https://theconversation.com/what-happened-to-aspergers-syndrome-89836 (accessed 22 February 2022). 

National Autistic Society (n.d.) ‘PDA — a guide for parents and carers’ [Online]. Available at https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pda/parents-and-carers (accessed 22 February 2022). 

National Institute for Health and Care Excellence (n.d.) ‘Autism’ [Online]. Available at https://www.nice.org.uk/guidance/conditions-and-diseases/mental-health-and-behavioural-conditions/autism (accessed 23 February 2022). 

NHS (2019) ‘What is autism?’, 18 April [Online]. Available at https://www.nhs.uk/conditions/autism/what-is-autism/ (accessed 10 March 2022). 

World Health Organisation (2019) ‘International Classification of Diseases – 11th Revision’ [Online]. Available at https://icd.who.int/en (accessed 22 February 2022). 

Photo by Polina Kovaleva

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