Two-Year NHS Autism Assessment Wait: A Personal Struggle Unveiled
As Autism Awareness Day is marked today, April 2, the growing waiting list for NHS autism assessments casts a shadow over many lives. Mirror writer Zahna Eklund opens up about her personal journey living in uncertainty, having waited over two years for a diagnosis.
The Reality of Waiting Lists and Gender Disparities
I first approached my GP about an autism assessment in October 2023, and since then, I have been stuck in limbo. While NICE guidelines in England and Northern Ireland stipulate that no one should wait longer than three months for an assessment, the reality is starkly different for many adults across the UK. Waiting lists often extend for months or even years, causing immense stress and depriving individuals of crucial support and interventions that only a formal diagnosis can unlock.
This issue is compounded by gender disparities. According to the Child Mind Institute, four young boys are diagnosed with autism for every young girl, but this is not due to genetic predisposition. Instead, it stems from systemic and unconscious sexism. Traits such as being quiet in social situations or having unique hobbies are often overlooked in women and girls, perceived as "normal." Women are also more likely to mask their symptoms, such as forcing eye contact, due to societal expectations of politeness. This masking can lead to a delayed realization of autism until adulthood, when mental health may have significantly deteriorated from years of trying to fit in.
My Personal Journey Through the System
In October 2023, I discussed potential autism and ADHD with my GP, who promptly provided referral forms—a step I acknowledge is not guaranteed for everyone. She also refilled my anxiety medication prescription, anticipating the stressful wait ahead. I submitted the forms immediately, but it was over a year later, in November 2024, that I received an email confirming my place on the waiting list, only because the assessment provider in my area changed.
Now, I receive updates every six months, a small comfort that my name hasn't been lost, but it does little to alleviate the daily struggles I face without a diagnosis or support.
Daily Challenges: Sound Sensitivity and Social Struggles
Life can be a real struggle, not just from major stressors but from everyday details that most people overlook. For me, sound sensitivity, or misophonia, is a significant issue. While many might find background noises like birds chirping or children playing merely annoying, for me, they trigger physical tightness in my chest, frustration, and anxiety. I use earplugs designed to filter noise, but wearing them for too long leads to overstimulation and claustrophobia, forcing me to remove them.
Social situations present another hurdle. I have few friends, mostly communicating online, and the idea of large gatherings fills me with dread. Masking symptoms to appear "normal" in social settings leaves me exhausted, yet prolonged isolation also takes a toll on my well-being. Striking a balance between social interaction and self-care remains an ongoing challenge.
The Impact and Hope for the Future
These traits, among others, wear down mental health over decades, with no end in sight. A diagnosis would not cure autism—there is no cure—but it would provide validation, access to better support tools, and relieve the burden of uncertainty. I continue to wait, knowing I am not alone in this limbo. On Autism Awareness Day, I share my story to shed light on the real experiences of those navigating long waits and hidden struggles, hoping for greater understanding and systemic change.
