I’ve had a lot of requests lately for a post about barriers to autism diagnosis. You can copy and print out the sections that are relevant to you. This could be helpful in educating medical professionals, or anyone else who is unfamiliar with the reasons why some autistic adults are not formally diagnosed.
In countries where healthcare is not free at point of access, economic status can be a barrier to autism diagnosis. If a family or autistic individual cannot afford the medical services required to obtain a referral and then the required assessments, it’s likely that the autistic individual will remain undiagnosed.
In countries where healthcare is free at point of access, one still needs to consider the potential costs of absence from work, absence from school and travel to assessments. This affects the working poor more than any other group, as absence from work will have the biggest impact upon them.
Education also plays a part in missed diagnosis. Our understanding of autism has been growing over the years and the diagnostic criteria have been expanding, but this has left out a population of autistic people who are newly qualified for diagnosis but are no longer at a stage where diagnosis is common, for example they have left education and so are not being as closely observed.
An autistic individual’s specific traits are also relevant in whether they obtain a diagnosis. Some traits are often misdiagnosed as other disorders, and it’s common for a late diagnosis to come after a number of other diagnoses. Depression, anxiety, personality disorders and ADHD are common diagnoses in autistic people who have not been identified as autistic. Autistic individuals who do not present with an intellectual disability are particularly at risk of this, as they are less likely to be diagnosed in childhood.
Sex also plays a part in an individual’s chances of diagnosis. In female autistics, a gendered difference in how autistic traits are interpreted results in a reduced rate of diagnosis. Female autistics are more likely to be characterised as shy, eccentric or having a personality disorder. There is also evidence to suggest that autism presents differently in females. The special interests, for example, may present as more socially-acceptable topics, like an interest in a popular band or celebrity. Their knowledge about this interest allows them to pass more easily in social groups. Female autistics, whether as a result of gendered socialisation or biological differences, tend to be more sociable than their male counterparts.
One of the reasons that autistic individuals without intellectual disability are less likely to be diagnosed in childhood is that it’s common for a diagnosing professional to require evidence from educational professionals in order to make a diagnosis. If an autistic child is progressing well in school, and is not causing classroom disruptions, it’s unlikely that the child’s teachers will provide such evidence.
Education of the parents of autistic individuals is also an important factor in whether an individual has access to diagnosis. While awareness of autism is widespread, and autistic characters are visible in many popular television series and some books, the portrayal usually holds to a narrow stereotype of autism. This misinformation can cause missed diagnosis when the parents feel that the child does not conform to the stereotypical presentation of autism, and therefore don’t consider the possibility that their child is autistic.
Parents aren’t always keen to achieve diagnosis for their children. Some parents are aware that an autism diagnosis may limit their child’s opportunities because of the stigma of labelled. They often feel that it may reduce their chances of successful social interactions with other children. Parents may also be aware that the available support for autistic children with particular traits is limited, and may feel that their children would not benefit from any accommodations in school.
Some parents are unwilling to seek a diagnosis for their children as a result of ableism. They may object to their children receiving special assistance, or may not want the additional contact with medical and psychiatric professionals that may uncover child abuse.
Autism is also described in medical terms that many autistic people believe don’t accurately reflect the experience of being autistic. This may dissuade autistic individuals from seeking diagnosis as they don’t view themselves as fitting the diagnostic criteria. When this applies to an undiagnosed autistic parent of an autistic child, the parent’s understanding of their child’s behaviour and their own experiences may cause them to discount autism as a possibility.
Autistic people also question how useful an official diagnosis is. They may not seek diagnosis because, like many parents of autistic children, they don’t see any benefit or any accommodations that would help them. This interlinks with financial considerations in deciding whether it’s worth the cost to pursue diagnosis. As many autistic adults also experience low energy and are easily overwhelmed, the physical, mental and emotional costs of pursuing diagnosis are also a consideration.
As undiagnosed autistic individuals get older, diagnosis gets more difficult to obtain. Autistic adults often fail to satisfy the diagnostic criteria as a result of having learned to limit behaviours that result in social stigma, and perform behaviours that increase acceptance. Bias in the medical profession against diagnosing adults can add to the difficulty of obtaining a diagnosis. It’s also much harder to provide evidence. Death or relationship breakdown with parents, and having been out of education for a long time limit the available evidence that could be presented to a diagnosing professional.
Barriers to autism diagnosis are found in every facet of society. They’re found in our handling of sex and gender, in our diagnostic criteria for autism, in society’s views about disability, in education, and in money. These barriers form part of a self-fulfilling cycle, where the focus on children excludes adults from diagnosis, creating a perception that all autistics are diagnosed as children. This perception decreases the focus on helping autistic adults get diagnosed and so on.
Whilst not a barrier to diagnosis, it’s also worth mentioning that this skew in the accessibility of diagnoses has an effect on how autism is perceived in terms of trends. The increasing number of children diagnosed as a result of changing diagnostic criteria and increased awareness creates the illusion of an “autism epidemic”, fueling public hysteria and increasing the popularity of theories like vaccine and other environmental causations. This in turn increases the popularity of autism cures, none of which have been properly tested for safety and efficacy and many of which are dangerous.