The road to diagnosis: Barriers
Our readers tell us about their journeys towards evaluation of autism, ADHD and other neurodevelopmental challenges. This is a summary of the theme “Barriers” — factors that obstructed, helped, slowed down or sped up the process.
--- Kajsa Igelström och Maria Strömberg ---
This is a loosely translated version of the original Swedish post. We recently ran an anonymous informal questionnaire called The Road to Diagnosis, which gave us stories from about 250 people (women, men and transgender individuals).* We’ll summarize the results over several blogposts, and this is the first one. Most participants had been diagnosed with autism or ADHD (or both), and a small number had other diagnoses such as DCD, tics or dyslexia. Cisgender women were in majority (84%) and most participants had been diagnosed late.
Here are the most common factors that were crucial (in either direction) in the process of seeking evaluation and diagnosis of autism/ADHD.
1. Let’s start with a lottery
People born in Sweden already have an advantage. For example, many adults in the USA in a recent study of ours referred to financial factors as a major barrier, and this appeared less common in Sweden. In addition, compared to some countries in Eastern Europe, Asia and Africa where neurodevelopmental differences may be extremely stigmatizing or completely unrecognized, there is more awareness in Sweden.
HOWEVER… the stories we collected showed an enormous variation in treatment, waiting times, and other factors. It became clear that even within the small country of Sweden, it’s a bit of a lottery. Local politics and geographical differences in the healthcare system seemed to matter a lot, and individual clinics had different policys on who they would or would not evaluate.
Geographical variability is understandable, and the variability within the healthcare system depends in part on variable abilities to take in the constant flow of new knowledge, and in part on variable competence of individual health professionals.
But the fact that the process had gone smoothly for some and taken many years for others, irrespective of clinical difficulties, shows that the process can work almost seamlessly but often does not. We suspect that before all contributing factors have been identified and standardized, one just has to hope to… be lucky.
Which leads us to the next point.
2. Meeting the right person
Many stories included complicated unfruitful rounds within the healthcare system, followed by the description of suddenly meeting a person who suspected what the problem was. It could be a social worker, a psychologist, a general practitioner, an occupational therapist, the person evaluating one’s kids for autism/ADHD…
Suddenly there was a person across the table, who had enough knowledge, creativity or energy to help get a process started towards insight and diagnosis.
These random encounters could happen at almost any point in the journey, it seemed. We saw few patterns, except 1) it often happened during the evaluation of one’s child, or 2) it happened after many years of mental health problems and appointments with countless health professionals.
3. One’s own insight may be a prerequisite
Many had not been lucky enough to run into a person who could guide them towards an evaluation. In those cases, the turning point was often one’s own insight, obtained through the experience of a relative with the same diagnosis, or through information in media or support groups.
After this point, some chose to live with the knowledge without seeking diagnosis, using new strategies to improve their function and becoming more forgiving to themselves. Such “self-diagnosis” was common in our first research study mainly involving people in the US/UK, where barriers to autism diagnosis for women and transgender people often involved fears of discrimination, losing custody or not being believed, and the logically sound argument that “there is no help to get anyway so why should I live with the stigma?”. In this Swedish group, it was pretty uncommon to be satisfied with self-identification — most wanted to get the diagnosis for validation or support.
Many more described a scenario of getting an insight that provided the motivation and courage to present their theories to a health professional. Again, the theme of having to encounter the “right” person showed up in the responses, but as long as that happened, evaluation and diagnosis often followed.
“Insight” obviously doesn’t guarantee that one has interpreted one’s own function in a correct way. But since insight was so often described by late-diagnosed people as a necessary trigger for getting the right care, we believe it indirectly reflects a real, important barrier to diagnosis:
These individuals are often “invisible” in the healthcare system until they themselves understand and present the possibility of autism/ADHD.
4. Chameleons fall between the cracks
Camouflaging has been discussed a lot in the most recent years, especially in the context of girls and women who had never externalized the problems. Masking of diagnostic traits is not unique to the female gender, but it has mainly been framed in that context. Some talk about “the female phenotype”, i.e. that autism and ADHD may manifest in ways that haven’t been properly described and studied yet.
Our network of participants currently comprises many “chameleons” who, through observation, training and a drive to seem normal, have become masters at hiding anything that could be interpreted as abnormal. They are so analytical and verbal that they can describe it eloquently and with great insight, but in real life, things can fall apart.
Several people described how they had been denied an evaluation entirely based on previously having studied or worked full-time. Others went through an evaluation and were told that they fulfilled all criteria when it came to the traits, but that they could not get diagnosed because their cognition/function was too good. These were people who had camouflaged for a long time, until they crashed and burned later in life, in ways that could not be called autism or ADHD (burnout, depressions, etc).
Camouflaging can literally be life-threatening. A recent study suggested that camouflaging of autism increases the risk of suicidality. The hundreds of stories that we have received from adults in a number of countries have shown us in a very palpable way how destructive it can be to not be able to exist as Oneself.
Which leads to our last point:
5. Smoke screens of psychiatric consequences
Adults and adolescents who live with neurodivergent minds without knowing it often suffer horribly. They find their own explanations for feeling different, not coping with school, failing to obtain and keep jobs, or becoming exhausted by the smallest things. They might identify as lazy, useless, alienated… There are many versions of how one’s mind can construct explanations for the chaos or alienation. It’s actually quite natural. The brain finds patterns based on the information available.
The most common descriptions of life before a diagnosis included intense psychiatric suffering and often burnout (the latter is a relatively common diagnosis in Sweden). We know from other studies that those who don’t get an early diagnosis may instead get a collection of other diagnoses, often depression, anxiety, bipolar disorder and personality disorders of different kinds.
Sometimes, those psychiatric conditions are later re-interpreted as consequences of the underlying autism/ADHD. Sometimes they are viewed as independent disorders. But whatever happens later, all those psychiatric problems may have formed a very effective smoke screen throughout adolescence and adulthood. Autistic adults have even been called The Lost Generation. People can drown in a stormy ocean of failures, stigmatizing diagnoses, counterproductive therapies and self-hatred.
There is hope
Despite all the negative descriptions of barriers to diagnosis and their consequences, it’s possible to see some solutions hiding between the lines:
The knowledge in society and the healthcare system must be broadened and standardized between different regions (and countries), to detect autism/ADHD quickly, also in adults. We are moving in that direction. More and more healthcare professionals learn to recognize the symptoms, more and more scientists get interested, more and more journalists and editors choose to report on it… It will get getter.
We also need to discuss what a “requirement for support” (needed for diagnosis) really means, and how to discover a need for support in high achievers. For example, we hope it’ll become less and less common that people get barred from getting an evaluation due to having a degree or job on their CV.
We always love feedback and more stories.
*This post is part of Extraordinary Brains’ outreach work, where we ask questions, individuals respond, and we summarize the responses in an informal way on the blog. In addition to these online summaries, we use the information to inform the design of new research studies, done on site in Sweden and online as questionnaires.