Anti-vaxxers and the proponents of other scare campaigns love to point to rapidly rising autism diagnoses as consequences of their pet hates. In reality, autism is probably not becoming more common, we're just getting better at recognizing it. This means plenty of older people grew up not knowing why they were unusual. A small but groundbreaking study reveals how much difference diagnosis can make.
Many autistic children who grew up in the 60s or 70s were mistreated by peers while lacking an explanation for the differences in the ways their brains worked. Anglia Ruskin University's Dr Steven Stagg and PhD student Hannah Belcher interviewed nine adults, all of whom were diagnosed with autism spectrum condition (ASC) for the first time after the age of 50. Although such a small group isn't statistically representative, their common experiences are probably much more widespread.
All the participants were aware of being different from most of the children around them from an early age, and could remember traits that make sense with the aid of the diagnosis.
Without a frame to fit them into, however, these differences were felt as wrongness. In Health Psychology and Behavioral Medicine, Stagg and Belcher quote one participant: “I just thought I was just bad really and didn’t really fit in and people didn’t like me, and I couldn’t really understand why.” A common theme was feeling so different as to be almost an alien; “I thought maybe I'm a bad person, I've got a horrible personality,” another said.
Meanwhile, the positive aspects of autism, such as skills in pattern recognition, went uncelebrated, and the shared culture established by people who have grown up with ASC diagnosis was missing.
Many of those in the study had been treated for conditions such as anxiety and depression, which often co-exist with autism. Even those who were tested at therapists' recommendation had usually been in treatment for years before ASC was mentioned.
Once the diagnosis was received, participants described not only a sense of vindication but the lifting of a weight. The pressure to perform in neurotypical ways was removed, instead allowing people to be themselves and play to their strengths. Some reported being better able to identify harmful stimuli and gain more control over their lives, even extending to physical problems like asthma attacks.
Had the diagnosis come earlier in life it may have made even more of a difference, particularly if accompanied by support services or examples of successful role models. Yet even without this, most of those in the study had established lives that refute their low self-image, with successful careers and long-lasting romantic relationships.
However, one of the participants reported increased bullying from an employer post-diagnosis, eventually leading to the loss of his job.
Five of the nine participants are women, in keeping with Belcher's previous work showing girls tend to be diagnosed later because their symptoms are less recognized.